I also want to say a huge Thank You to all of you for your good wishes and support- it means a lot, and is very helpful in buoying me up! Also to those who have e-mailed me/Pm'd me on Facebook/texted me-I really appreciate the time you take, and everyones offers of help- we have a wonderful circle of friends, both near and far. And to everyone who takes the time and trouble to scroll to the end of this to leave me comments, Thank You so much, I read them all, and am very appreciative of your good wishes and messages of support. xxxx
The reason for this page is so that I can keep everyone up to date with what's happening, and also with the hope that it will provide some useful info for anyone else who finds themselves in this place. Because finding information on the net isn't difficult, quite the contrary- its finding reliable info that's hard. Involves a lot of wading through crap, to sift out the occasional nuggets.
I'm putting everything in reverse order, so to speak, so the most up to date posts will be at the top- wasn't sure how to do it, but most people seem to think thats better, and I have to agree. So the story really starts right at the bottom.I will apologise for what will be long, wordy posts, as I'm trying to be as honest and clear as possible.
For anyone a little squeamish, you may find sections you just want to skip over, but I wanted to put in all the details for anyone else who finds themselves in this place.
Thursday 19th October 2017
Back again with an update. As I talked about in the last health update, I was planned for a course of Enhanced Radiotherapy, whats known as Cyberknife Technology. I've had that now, and am in the 'waiting till it's finished working' state, so they can go an MRI to see what it's done.
I have an appointment with the Oncologist next week, which will just mainly be a chat, as we need the scan to get any real info.
I've actually spent the last two weeks in the local hospital, thanks to a UTI that got out of hand, and developed into Sepsis.
In hindsight, I could kick myself for not realising what was happening, but as I'd finished the radiotherapy the previous week, I think I was too fixated on that, and the side effects of tiredness & breathlessness to put two and two together.
What happened was that I finished the radiotherapy on the Wednesday. Then on Thursday I had my regular quarterly catheter change. On the Sunday I managed to fall in the bathroom and landed hard on my butt. The following Tuesday night I started waking up having sweat so much you could have wrung out the sheet & the pillow! Carried on sweating like that for a few nights, then had a GP's'appointment on the Friday morning. He checked my temperature and it was fine BUT, neither of us remembered I was taking 2 Paracetamol 4 times a day, which would of course mask any temperature I might have had.
This all led to me being too poorly to get to the Crop, I spent most of Saturday sleeping on the sofa, and apart from getting up for a shower, all of Sunday asleep in bed.
On Monday I had a regular check in type appointment with my Oncologist at the local hospital. I still had a raging temperature, the sweat was literally running off me,so I kept the appointment, as I knew something was wrong with me, and suspected that hospital was where I needed to be. He took one look at me and told me I looked like I should be admitted. Then he got a nurse to check my blood pressure, at which point things went into overdrive. It was 88 over 63, which would be worryingly low for a normal person, but as they had been giving me tablets for HIGH blood pressure for the last two years- regularly 200+ over160+, this represented a worrying drop. So much so, he sent a nurse for a wheelchair, and told me I did not stand up again until they had got it back up.So, I'm admitted,my blood pressure tablets are suspended while they figure out whats wrong.
As I said, I think I was so fixated on the Radiotherapy, I didn't 't put the sweating/fever together with the Catheter change, which is always a high risk time to get a UTI.
The reason I have a catheter is because since my bowel surgery, I have no bladder/urinary sensation, so don't get the typical early symptoms of burning when peeing. I really should have been more aware, but I'm afraid it's just plain complacency, as I haven't had a problem in the two years I've had it.
Lesson learnt, I intend to check my temperature regularly at home, and take a urine sample to my gp every couple of weeks just to be on the safe side.
Now, as an added complication, the flap of skin that was created to cover the area where my tailbone was removed had also now become infected, but, because it was done at the QE, by highly skilled surgeons, the surgeons at my local hospital admitted they were not sure how to deal with this, other than high strength IV antibiotics, as the previous surgery was far above their skill level.
So, there have been emails back and forth to my previous surgeon at the QE, along with a scan of the area and I imagine I will get an appointment to see someone there shortly.
They were talking about transferring me there, but as I'd already spent two weeks in hospital, and we seemed to have reached the point where the antibiotics weren't doing anything much, I said I wanted to go jome. If they transferred me straight to the QE, I would be in there for up to a week before I got discussed at an MDT meeting, where they would decide who would do what. I decided I could just as easily spend that time waiting at home, and they could send for me when decisions had been made. So I'm at home with a course of antibiotics to take, and the District Nurse coming every day this week to change dressings.
So thats how things stand at the moment, apart from one amusing thing. For the last two weeks, my blood pressure is perfectly normal-no tablets required. They've also discontinued my Paracetemol, so I now have 9 less tablets to take each day.
Monday 14th August (2)
As this is a bit of useful information for anyone with an Ostomy pouch, I'll leave this post right at the top.
Anyone with an Ostomy will know that swimwear can be an issue. Those made especially for Ostomy patients can be very expensive, I've found, and not the best looking, either. It is possible to find a Ruched bathing suit, which helps to hide pouches,from High Street retails, but not always. The normal, sleek type of suit makes them very obvious. For once, ads on Pinterest have provided something valuable. This ad, from a company called Liligal has lots of lovely swimwear, suitable for our purposes. I've included a few pics here to give you an idea. This is just a very small sample- I found 10 pages-and there are 50+ on each page- with most of them ideal for Ostomy patients.
Monday 14th August 2017
Right, time for a new update. After my last scan, back in May, when we went for the results, it turns out there was another something lurking in the background. This is one of the problems with getting referred from one hospital to another and back. It seems, from back in January when we last saw the Oncologist at the QE, there was a patch of something in my pelvis. As that had also shown up the nodule on my lung, and that was the one they were more concerned with, that was all he had told us about. My Oncologist at the local hospital had assumed we'd been told about the other, but that they weren't overly concerned about it, but it hadn't been mentioned. So came as a bit of a surprise that there was something else! It hadn't lit up an my previous PET scans, so it's highly likely it isn't actually a serious problem, but it is getting larger between scans, and shouldn't be there.
Anyway, when we spoke to him, he said that he had referred me back to the QE, as it could possibly be suitable for targeted radiotherapy, which was only done there, not at our local hospital. Apparently, as I've already had a full course of Radio, I can't have another like it, and the blob, for want of a better word, is from the original bowel cancer. I said before that my tumour was a mucus forming one, and that's what they believe this to be. Because it's a mucous, trying to surgically remove it was highly likely to spread it more, so that's not an option.
We've seen the new Oncologist, and I have to say he's a lovely man, took to him straight away.
He'd spoken to my QE surgeon, Mr Radley, who confirmed he would not want to try surgery on it, and the Oncologist, Dr Goode, proposed a course of concentrated Radiotherapy, 5 courses, every other day, so taking around 10 days. It is the same dosage as you'd receive over the normal type of course, but concentrated down into larger individual dosages.
It appears this is a new type of treatment for this purpose, as he said that so far they only have data for 18 months post treatment, in his words, 'I prefer the term Pioneer, rather than Guinea Pig'!
He also wanted to do another PET scan, just to be sure that was all we were dealing with. I had the PET scan on Friday4th August, and haven't heard anything yet, so it seems likely there isn't anything else, as he said he'd get in touch if there was.
Last Monday,7th, I had my Radiotherapy Planning Session, and my first dose is scheduled for the 31st. So that's where we are at the moment.
Monday 03rd April 2017
Okay, so I've been a little lax in updating this, but here goes.
As I said, I had a surgery date for the 7th of Feb, and a pre-med date of the 26th of Jan. Pre-med went ok, then the next day I had a phone call saying that if I was willing to swap surgeons, one had an opening on the 1st of Feb, which meant I'd get it a week early, so I grabbed the chance.
All went fine, surgery was about 4 hours, I believe. Came back up to the ward, HDU, and was settled down.
I had extra oxygen at first, and a morphine drip. When the docs came round next day, I found out the surgery hadn't been keyhole, as the nodule had been to deep for that method, so I now have a whacking scar across my back!
They also said that they'd removed 2/3rds of my left lung, which instantly had me worried, as the registrar I'd seen back in December said they would only remove a wedge from my lung, as I'd struggle to cope with my breathing if they took more.Because they hadn't been able to access the nodule to send a frozen slice to the lab, they'd had to err on the side of caution and remove enough to be sure they'd taken enough, if it turned out to be a new primary. But the results for that would take a couple of weeks yet.
Later that evening, whilst trying to cough to clear the muck left on your lungs from the anaesthetic, I started to gasp for breath, really struggling. Instantly that registrars words come back to me, and a panic attack follows, making it even harder. The nurses get me calmed down, and all I can think about is 'is this how it's going to be all the time now?' really has me worried.
I'm better the next day, and the morphine drip is taken away, I'm now just getting it in painkiller tablets through the day.
After a couple of days, as things are going fine, I'm moved into the open ward, meet a lovely bunch of ladies in there. However, just after going in, I start coughing again, and another panic attack follows. Nurses talk me down again, and all is well. Not having any problems sleeping, and I'm still getting extra oxygen.
Chatting next day to the other ladies, it seems one of them has had very similar surgery to me, with a similar amount of lung removed. She had her surgery two days before me, and I realise two things, One, I haven't been struggling at all whilst talking, and two, the other lady isn't struggling at all, so I can see that is where I will be in a couple of days.
That buoyed me up enormously, and I can say that I haven't had a problem since, I'm pretty sure it was that registrars words in my head that made matters worse.
I left hospital on the 9th of Feb, and have gradually been increasing the distances I walk. I push myself enough, but not to the point of struggling to breathe. I do get breathless more easily now, definitely, but as long as I pace myself, all is fine.
We had a call back, for results, and it turns out it was a secondary from the bowel cancer, not a new primary.
On a funny side note, nurse doing a finger prick blood sugar test the day after surgery-'Are you being investigated or treated for Diabetes?'- Me: 'No' Nurse: Well it most definitely looks like you are Type 2.'
And as subsequent blood tests have shown, indeed I am now Type 2 Diabetic, to add to my growing list of issues. Not to say a bulging medicine cabinet!
Oh, and after a visit to the GP to get the Diabetes rundown, apparently I have slightly raised cholesterol. Go figure.
Anyway, I've since seen my Oncologist, who is arranging a Full Body Scan in the next few weeks, and it's generally back to regular scans and monitoring.
Sunday 23rd January 2017
Well after a lot of hanging about, I finally have the date for my surgery to remove the nodule from my lung. It's Tuesday 7th February, and will be done at Heartlands Hospital, Birmingham. I have my pre-med date for the 26th of January, so now it's fingers crossed, as Heartlands has an unfortunate reputation for cancelling ops due to bed shortages. Just want to get this over and done with now, seems like it's taken way too long.
As long as the surgery date doesn't change, Doug will post an update on my main blog page, probably on the Wednesday afternoon.
Sunday 13 November 2016
Finally! I have had both appointments turn up, for the coming week. A Nuclear Medicine Lung Scan on Wednesday, and a normal CT scan on Friday. The Nuclear one seems to be similar to a PET scan, where they inject you with radioactive dye, which will show them the blood supply to my lungs. You also then have to breathe in radioactive gas, which shows how well the areas of your lungs function.
Funny how I've been phoning the Thoracic surgeons secretary about these appointments, and kept getting told they were being organised, then last Thursday my original colorectal surgeon said he'd chase them, and miraculously within days they arrive!
Tuesday 08 November 2016
Nothing new to report, I'm still waiting for the appointments for the Lung Function Tests!
So we are way past when he said the surgery would be, and no idea when it will actually happen. I did have an appointment to see my original surgeon last week, and he said he will see if he can chase things up a bit.
Thursday 25 August 2016
Well, the road to recovery has hit a bit of a speed bump!
I had a CT scan, which I mentioned in the last post, and the technicians wanted me to have an MRI as there was an area of the tailbone they wanted a better look at. They weren't sure if there was a problem, or if it was just how things were healing. It turned out thats all it was, but, what did pop up was a small patch on one lung. So, a PET CT scan was ordered. Turns out, there is something there, but we don't know what.
It's very small, about 2 cm, so the plan is to remove it as it shouldn't be there, no matter what it is. It could be something from the bowel cancer, it may be a new primary lung cancer, or it may be nothing at all important.
Yesterday we had a meeting with the surgeon who will do the surgery, a Mr Steyn, who turned out to be a really lovely man. I do think that helps when you can take to them, you come away fully confident in them.
So, the plan as I said is to remove it. He said it will be sent up to the lab whilst I'm in surgery, who hopefully will be able to tell him what it is, so he can make a decision on whether he has removed enough tissue. If it's from the bowel cancer, then he can take away a small area, the same as if it's nothing important. If it's a primary lung cancer, then they'll want to remove a bit more to be sure.
They can't always give a definitive answer, but often they can. Obviously, he wants to remove enough to do the job, but the minimum to impact my breathing. Bit of a balancing act.
I also have to go for a couple of specialised lung function tests, which will tell him what areas of the lung are absorbing the most oxygen, and which the least. Hopefully this spot is in an area absorbing the least, so that removing more if needed won't impact on my breathing too much.
So whether or not it's keyhole or open, or how much lung tissue they need to remove will all be decided on the day.
He's sort of planning end of September, early October, but I'm guessing we will be closer to mid October. He said he's on holiday the first two weeks of September, and I told him we are away till the 11th too. Then I have to have the two tests, plus another meeting with him for any info from them, and I doubt those tests will happen till after our holiday. I'll be in hospital for 4-8 days, and this surgery is nowhere near as major as the first one, which is good. It's also a 3-4 month recovery period, which will mean the planned staged return to work in September won't be happening now until Jan/Feb!
So that's where we are right now. More details when we know more, lol.
Monday 20th June 2016
Been a while since I did any updates, but I do want to keep adding a post every now and then, for anyone who finds this blog because they are in the same place I was.
I'm going for regular physio at my local hospital, every Friday morning in the Lower Limb Clinic. Definitely helping me a lot- if you have surgery, ask for physio! For instance, I can now crouch down and get myself back up- first time I've been able to do that since my surgery. The last time I tried it, about 3 months after surgery, I got down but could not get back up, I had to call Doug to help me. So thats all to the good.
I had a CT scan at the QE a couple of weeks ago, and I have an appointment this Friday for the results. That will be about 9 months since my surgery.
One problem I've had a lot is sciatica, stupidly enough in my good, right leg! My physiotherapist thinks it's due to all the numbness I have in my left side, I'm overcompensating and throwing my weight onto my right side. Have painkillers from my GP, and he's sending me for an MRI on my back, just to be certain it has no other cause.
I'm gradually getting stronger, and increasing my stamina. I don't use my walking stick at all around the house and garden now, I just have it with me when I go out, as I know I'll need it after a while.
But, all being well, I'm hoping to start a phased return to work in the next couple of months. Doug has booked us a weeks holiday for the first week of September, as he wanted us to do something for the anniversary of my surgery, and as it turns out , we will actually fly out to Tenerife on the anniversary date! So, all being well, I will start a phased return when we get back, as I have a few more weeks of physio yet, and it's not worth going back for a week or two then having a break.
Thursday 07th April 2016
Last Friday I had to return to the QE for a day case. When I saw the Urologist back in November, he said the stent in my kidney would need changing after 6 months.I had a phone call from them saying they'd had a cancellation, and could I take up the date, which I could. I had to arrive for 7.30 am, and I think it was about 10.30 when I was taken down to theatre. Although a small procedure, it's done under a general anaesthetic, which is where the fun starts.
Unfortunately, having chemo really plays havoc with your veins. No problem finding them to get blood out, but getting one to let you put stuff in is another matter entirely. One attempt in the back of my left hand, 2 in the back of my right, and he looks at me and asks 'Chemo'? I nodded yes, and he looked at my wrist, said he could put one in the main vein there, but would be uncomfortable, so he'd put me out first with the gas, then do it. Next thing I know I'm waking up in recovery, and job is done. About 4 hours later, I was allowed home.
Today I saw the Physiotherapist, and she has given me some exercises to do with my left leg. I see her again next week to see how I got on.
Tuesday 15th March 2016
I just realised I hadn't updated lately, so sorry for that. Right, on the 4th March I had my first CT scan since my surgery. Then on the 10th, a meeting with my original surgeon, Mr Patel, who's care I'm back under. First info was that the scan came back all clear, so that's good news. I will get a scan every 6 months, for two years, then every 12 months for three years.
I've also asked him to refer me to a physiotherapist, as I really feel I'd benefit from it. As I'm not as active as before the surgery, I really need some form of exercise, but I don't know what I can safely do. I've already been told that I am never allowed to lift heavy weights again. Plus, I cannot stoop or squat down, nor can I kneel down. If I do, I cannot get up again, I do not have enough strength in my thighs.So I know I need some help. I'll update again when I have something more interesting!
Sunday 07th February 2016.
Well, I just had a look and realised how long it's been since my last update! I think because all the surgery has been done, and all I'm doing now is recouperating, I'm getting a little slack here.
Since I last posted last October, I've had a follow up with my surgeon, Mr Radley. He was very happy with how things had gone, and was fully confident that they had removed all the tumour. One point about my tumour that I didn't know is that it was a sort that produces a mucus to surround itself with.
He said that the mucus extended to the margins of the area removed, in the lab tests afterwards. He would have been happier if there had been a gap he said, but basically,there may or may not be some mucus left behind, which may or may not have micro cells within it, which in turn, may or may not develop into another tumour. So a lot of maybe's involved. He is going to arrange for me to see an Oncology Professor at the QE, and see whether he advises a course of mop-up chemo, or a wait and see attitude. As all cancer treatments do a considerable amount of damage to healthy cells as well as rogue ones, it is quite possible that a wait and see approach will be suggested.
Mr Radley has also referred me back now to my original surgeon in Redditch, for my follow-ups, as we live about 10 minutes away from that hospital, as opposed to about an hours drive to the QE, and the same back, which can almost double if it's a busy time of day. I went yesterday for a blood test, and have my CT scan at the beginning of March, which will be my first since the surgery.
I also had a follow up with Mr Balaal, the Urologist, in November. After tests, it's clear my bladder all functions as normal, I just as yet have no sensation. He told me this could take up to a year or so to return, so clearly it will be a gradual thing.
On my recovery, I am gradually getting stronger, although being on my feet for too long really wipes me out, and can take a day or two to recover from. I do have a limit to how far I can walk, and going shopping anywhere does rely on Beloved Hubby taking me- although we only live a 5 minute walk from town, I could not manage that walk at the moment, and I'd be worn out walking around town. Plus getting home is uphill, and that I really cannot manage.
Thursday 29th October 2015
So it's been a while since I updated this, and I know many of you followed my progress on the blog Doug set up, which you can find here:http://birdshospitalstay.blogspot.co.uk/. For anyone who's partner is about to undergo surgery, I recommend giving it a read. Whilst their surgery may not be as massive as mine, it will give you an insight into what the waiting partner goes through.
For those who haven't read Dougs blog, the 6-8 hour surgery turned into 11, and the 10-14 day stay in hospital turned into the time I spent on HDU, totally off my face on Morphine and Ketamine, amongst various others. I actually spent 6 weeks in hospital, due to one infection or another.
The biggest shock for me has been the recovery. It's going to take much longer, and be much harder than I expected.They had made it clear this was a major piece of surgery, but it's only afterwards that I appreciated just HOW major it was.
I went into this fully expecting to be home in two weeks, maybe less,and back at work before Christmas.Not totally registering the recovery period of 20weeks minimum I was given for any Orthopaedic surgery actually works out to 5 months.
It was a huge shock, after 2 weeks of only being allowed to lie on my side, no sitting/ standing so the transplanted muscle and skin could heal properly, to discover that standing and walking are skills your body can soon forget, and your legs will not hold you up, your feet will not move when you want them to. My first three shuffles-I can't call them steps-were from the HDU bed to the bed I was being taken to the main ward on, and left me feeling like I'd done a half marathon.
I think that was one of my reality checks- things were not going to be as easy as I thought.Since I've been home, 2 weeks now, I've had to re-adjust my expectations quite a bit, and accept that this recovery is going to be long and slow. However I can see each day that I'm making progress- I can do things easier, or walk further, and those are the gains I focus on, not what I can't do yet.
I have a follow up appointment with Mr Radley on the 12th November, and an appointment with the Urologist on the 17th, to figure out whats going on with my bladder. At the moment I have a catheter, as my bladder has no sensation of being full, so they need to figure out why that is.
So thats where we are at the moment, I'll have updates after my appointments.
Thursday 20th August 2016- A Review
I thought that as I've now reached the point where I am two weeks away from my surgery, I would do a round up of the past year -what's gone on,treatments, side effects, and things I've discovered.So this will be quite a long post!
One online resource I would like to strongly recommend is the Beating Bowel Cancer Forum. Here you will get excellent advice with lots of help and support. The internet can be a blessing or a curse where cancer is concerned- a lot of rubbish is posted, and it's not always easy to sort out the diamonds from the snake-oil salesman. BBCF is filled with people in all stages of bowel cancers, and they also have qualified nurses you can talk to.
If you are finding yourself in this place now, I'd suggest after reading this bit, you go to the bottom of the page, and start reading up, to get much more detailed info on each stage.
It was mid August last year when I got my diagnosis, and my first meeting with the Consultant Surgeon who would be leading the team for my treatment, Mr Patel. I took to him, and his Nurse Specialist, Sandra, straight away. Both were warm, friendly people I felt comfortable with.My tumour was larger than he would like to remove, so the first stage would be Chemoradiotherapy to try and shrink it.
This is when I also found out I needed to have a temporary colostomy- an idea that really upset me. I hated the very idea of it. The reasoning was that radiotherapy was designed to shrink the tumour, and if it shrunk bowel tissue around it, could cause potentially life threatening blockages, which would entail emergency surgery. I resigned myself to it, albeit very unwillingly.
Whilst I was in hospital having my op, a lady was admitted in the bed next to me, having just had emergency surgery, for a bowel blockage caused by radiotherapy, so I got total confirmation that he had been right to push for this.We got chatting, and she said to me that she'd given birth to two children, but the pain from the blockage was worse than either of those times.
But before the surgery, I had to see the Stoma Nurse Specialist, in my case a lady called Jane, who was marvellous, truly. Because mine was planned, she could choose the best place to site it on my abdomen,based on the clothes I normally wear, to make life as easy as possible.My surgery was done on a Wednesday, and I had no problems from it at all. I was out of bed the same evening,and walking around the ward and hospital the next day. I was allowed to go home on the Saturday, and return on Monday for an official discharge.
Lessons learnt here: Your Stoma Specialist Nurse really is your friend. She will help you cope, advise you, get you sorted with supplies.
As is your surgeons Colorectal Nurse Specialist. Any problems or questions, both are always only a phone call away. I still speak often to my original surgeons nurse, Sandra, and if she hasn't seen us at a clinic for a few weeks, she will phone me to find out how I am.
Expect that a lot of your future conversations (probably with your partner) will involve poo. Poo related subjects will become the norm. If it embarrasses you, you will need to get over it. Trust me.
Also, wind. The stoma allows wind to pass out of it. No warning, no way of stopping it. You can help somewhat by paying attention to diet- the same things that would normally cause gas still do so. However, overall, you have two choices. Die of embarrassment when it happens in company, or get a sense of humour, fast. I strongly recommend the second option, because, trust me, it WILL happen.
For this sort of reason, I also strongly suggest you get used to talking about having a colostomy/stoma. It's one of those things, we've all heard of them but most of us don't actually know what it is, why it's there etc. I know I didn't.
Give it a name- your Stoma nurse will probably suggest it. It's got to become your friend, it's there to help cure you/save your life.
Mine is called Sid- from Ice Age character, as he is slightly oval, and does indeed look slightly like him. I have a friend who's named hers Kermit, after the frog.
Now I had a 6 week wait for the Chemoradiotherapy to start, to allow full recovery.
Not all hospitals have Radiotherapy centres, and my closet was Coventry at that time, more or less an hours journey each way. The Chemo was in tablet form, Capecetibine, taken twice a day, 5 days a week. The Radiotherapy was daily, 5 days a week, for a total of 5 weeks.
Lessons learnt here: You get told, and read, that it can take up to 12 months to fully recover from radiotherapy. Believe it! I didn't,and found it a bit of a shocker to realise it might well be true. You WILL get tired- very- and lack stamina afterwards. Strangely, I was fine, totally, all the way through it I carried on working,it was about a week after it finished I began to feel incredibly tired, I could sleep 18 hours over the day, no problem.
And I had what are called Tenesmus spasms- the bowel cramping, and ended up an a whole assortment of painkillers. DO NOT SUFFER! Go to your Gp and ask for help.
I also developed a problem with my colostomy pouches. It seems my skin had developed a reaction to the adhesive on the pouches flange, that sticks to your skin. It was very sore, very itchy, and the skin seemed to be being melted.
Apparently, developing this is not an uncommon side effect of radiotherapy, so now I needed some different pouches. Again, my Stoma Nurse to the rescue. She got me some samples of different brands to try- there are many, many companies manufacturing pouches, and she told me they are constantly bringing out new ones.
Drainable Colostomy bags: Order some of these for when your treatment starts. Chemoradiotherapy can cause diarrhoea, and this means you do not have to keep changing pouches, as this could give you very sore skin.
That part lasted a few weeks, then it was waiting for new scans to see what had been achieved. In the end, in my case, very little. Radiotherapy doesn't work for everyone, and I was one of them. Very little shrinkage had been achieved, and so the next step was IV Chemo, backed up by more tablet Chemo.
This started on the 12th of Feb, and finished on 17th April. It was 4 sets, or cycles, of 3 week treatments. This meant 1 IV treatment, then two weeks of tablet chemo, a weeks break, then the cycle started again. The only problems I had were the neuropathy tingling in fingers when I touched anything cold. No sickness or diarrhoea, no loss of appetite. I did find that for the first week I couldn't eat or drink anything cold though. So far, the neuropathy vanished after the last treatment and I've had none since. I do know, from some forums, that not everyone is this lucky though.
So, got through that bit, and now more scans. Trust me, you start to feel like a bar code after a while!
When the results of these scans came back, it turned out to be good, and bad news. The good was that some shrinkage had happened, and there was no sign of any spread of cancerous cells. The bad news was that it seemed very likely that it had attached itself to my tailbone, which complicated matters somewhat. It also meant being referred to a different Surgeon, and his team, as this had now become a very specialised op, and my surgeon would not be doing it.
So, thats a very foreshortened version of my last year- I've met two of the surgeons who will be part of my op team, and two weeks today, it will be over.
In a couple of places, you'll see I've put down lessons I've learnt. I'll add a few more here, on various topics, then I'm going to do a little bit about pouches.
Dietary advice after you have a stoma: you will get given a list of foods to avoid, due to difficulty in digesting.( Sweetcorn/peas/salad leaves/tomatoes/ potato skins and so on) Remember, you have less bowel length now to do this, so some care needs to be taken. However, I can say that over the last year, bit by bit, I've tested out what I can safely eat, and so far, I haven't found anything that I can't eat, as long as I remember one simple fact: CHEW ALL FOOD THOROUGHLY! I find that as long as I do that, nothing seems to be out of bounds. The only thing I haven't as yet tried is nuts, although my friend has, and had no problem.
Constipation: My Stoma nurses recommendation was to make sure I was drinking plenty of water for starters. They will also give you a stool softener to take daily when you are released from hospital. After that, Liquorice Allsorts or plain chocolate will both help to cure the problem. I can vouch for both, as I had this problem from all the painkillers I was taking, and it worked a treat.
Diarrorhea: Marshmallows, or any jelly type sweets (Wine Gums/Jelly Babies/Fruit gums and pastilles) as the gelatine in them helps to firm things up. Just a SMALL handful though, or you'll be needing the plain chocolate and allsorts!
No problem is too small or insignificant to ask questions over. If you are not sure of something, call your Colorectal nurse/Stoma nurse, and ask. They'd rather you did that, than neglect something that may become a bigger problem later on.
Your Stoma will not stop you doing any activity you do now. Indeed, if you have been having issues with frequent trips to the toilet, or accidents, it will positively improve your life. And this is coming from someone who was totally against having to have one, which was supposed to be only temporary, however, due to the tailbone issue, mine will be being made permanent.
Get into a fairly regular eating pattern. By this, I don't mean you have to eat at precisely the same time every day, but rather, within a rough time frame of maybe 3 hours.This will help tremendously to regulate when your stoma is active, and this helps with planning your day/working/trips out.
For example, I have lunch around 1.00, it's rare I eat breakfast, which I know I ought to, but I've just never been a breakfast person. Evening meal is anywhere between about 7.00pm, if we are eating before Hubby goes to work, (night shift), and about 9.30pm, if we eat out. With this rough routine, Sid tends to get busy about 10.00am, so I will do a change then. He may do a little more, but generally by midday, he's done till the next morning. So then I'll change him again, and that's it.
Organising supplies: Your Stoma nurse, either at the hospital, or your Community Stoma nurse will get you started with supplies for when you leave hospital. After that, you will need to get a prescription from your GP, and send this to an Ostomy supplier. You can stay with the one they first set you up with, or choose another. An online search will give you names. Your prescriptions will be free, by the way.
The company that provided the trial packs I was given was Charter Healthcare, and I've stayed with them. You get dry wipes/wet wipes/disposal bags as free supplies to your order, you don't need the prescription for them, whoever you use.
You can keep using the pouches you have at first, if you like them, or you can try different ones from the supplier, by requesting free samples.
They will also cut the hole in the pouches to fit your stoma if you wish, once it's size has settled down. I tried it, but didn't like the finish. I can cut them smoother myself, and it only takes a few seconds.
My nurse also advised me to always make sure I had a clear months supply left when I requested a new prescription. That way you always have a good safety margin.
Travel and Day trips: For days out, you will often have been provided with a free gift travel pouch by your supplier. Enough room for a few pouches/dry wipes/disposal bags etc. If you look at pictures of me, I am usually in a top and leggings. I always have a spare pair of undies and leggings rolled up in my bag- accidents can happen, if a pouch starts to come unstuck, for instance. Do any cutting before you go.
Toilets: You are entitled to use disabled toilets, as you need a sink to hand for cleaning, if you do a bag change. You can get the RADAR system keys to buy on Amazon.
For longer holidays, especially abroad:Firstly, once you have booked, speak to the flight provider. They will give you extra baggage allowance for carrying medical supplies. ( Get a Colostomy travel certificate via you Colorectal or Stoma nurse, and get it completed by your GP, for Airport Security). Also, if you have recently had surgery/chemotherapy, tell them that. Most will give you a free upgrade to extra leg room seats.
Spread your supplies amongst all the cases you are carrying. Some in hold luggage, some in your partners, some in your cabin bag.That way, if a case goes missing, you are not stuck.
Take drainable pouches with you, even if you don't normally use them, in case of tummy upsets.
Try to go and do a pouch change before you board. Just remember, aerosols and scissors need to go in hold luggage.
Swimwear: There are companies selling swimwear for pouch wearers, but they are very expensive, I thought. £40ish for a ruched swimsuit. And that's actually all you need to look for in the High Street- a ruched swimsuit- just so it's not skin tight. I got one for £8 from Primark, so look around. It also doesn't mean a bikini is out, it just won't be a tiny one! I found one with a shorts bottom, that had a little wrap around skirt built in. Also £8. Wore it all holiday, did fine. Gents will cope fine with swimming shorts- most men wear them these days anyway.
Oh, and yes, you can swim with a stoma! In the part about pouches I'm going to do next, I'll show you the 'Stoma Caps' used for when you want to swim/ only need a tiny pouch.
Remember what I said earlier: YOUR COLOSTOMY WILL NOT STOP YOU DOING ANYTHING YOU WOULD NORMALLY DO, OR WANT TO DO!
Another pic here, with the ruler the other way, so you can get an idea of dimensions. By comparison, the actual size of the caps is barely larger than the flange on a normal bag.
I earlier mentioned Drainable Bags:
These are used mainly by Ileostomists, as their output is much more liquid than from a colostomy, but they are useful for certain situations- where you may not be able to do a pouch change, or tummy upsets would require many pouch changes.
As you can see, the longer piece at the bottom folds up and is held in place by velcro, so there is no worry about leaks.And they also come in various sizes, by a lot of manufacturers.
Additional bits and pieces:
Black disposal bags and dry wipes, for cleaning. Both are supplied free with your orders, you just tell them how many of each you want.
Aerosol Adhesive remover, which you spray onto the edge of the pouch to make it easier to peel off your skin. The two sachets contain an adhesive remover wipe and a Stoma Skin barrier wipe.
The small bottle is a sample of Pouch deodorant, which you can spray into the pouch before fitting.
The scissors are angled, with a rounded blade, for cutting the pouch holes to the right size and shape for your stoma, unless, or until, you want to order them precut.
They can also be great to use when you are first venturing out after your surgery- they give you a sense of confidence that all is secure!
So, I hope this has provided some useful information for anyone who needs it. If you want to ask me anything, there is am e-mail link in my sidebar- I'm always happy to answer something if I can. I'd also like to say that all this is coming from someone who totally hated the idea of a colostomy, even when I was told it was only a temporary matter. I was dreadfully upset when I realised it was now going to be made permanent, until I realised that poor bowel control, or no bowel control, would impact on what I was able to do, and where I was able to go, in a way that the Stoma did not. It actually sets me free to go where I like, for as long as I like, without the risk of embarrassing accidents, or constantly needing to know where the closest toilet was. So, if I appear content with it, it's for that reason.
And finally, in case you don't get to the start of this page, the question that worries everyone- Will my pouch be visible to others?
You tell me! Can you tell I have a colostomy?
This pic, by the way, was taken 2 weeks after I had my surgery- we went to the Tower of London for the day. Hence the white 'socks'- those blasted elasticated stockings you have to wear for a few weeks after surgery!
Oh, and that reminds me if another bit of advice:
When travelling by car for the first couple of weeks, you may find the placement of the seatbelt presses against the stoma, making it uncomfortable.I discovered this on this journey. Solution? We popped into a Tesco, and I bough a fluffy face flannel for about a quid. I folded it in half, then wrapped it around the part of the seatbelt that covered Sid. Problem solved. I know you can buy sleeves to add to seat belts, but this is only needed for a couple of weeks, and is a cheaper fix.
Tuesday 18th August 2015
Right,a week ago, last Wednesday, I had a call from the secretary of the Orthopaedic surgeon, a Mr.Grainger, who will be involved in my op, asking if I could attend an outpatient clinic on Friday,14th. Agreed to that, and afterwards I rang my DIL, and told her about the appointment, and who it was with. She was extremely pleased at who was doing the op, and said that he was one of the two Ortho surgeons she had been hoping I'd get. She has had a spinal fusion since a child, and some years ago now, the fusion was fractured when someone went into the back of her car,and he is the Ortho she has been under for a while. Unfortunately, her situation is that any op may make it better, may leave her the same, or may make it worse, so she lives with constant back pain.
Anyway, she said he was extremely good, very nice, and very funny. So I kept my fingers crossed.
Got there on Friday, and she was totally right, he's very nice and funny. I took to him straight away, and came out very happy.
I did tell him he came highly recommended by my DIL, and he remembers her.
He talked us through his bit of the op, and said his was the easiest and shortest part. Told us what to expect afterwards, possible problems and so on. Then asked if we had any questions, and I said no, I think he answered everything I was going to ask already. He said, I have done a few of these, so sort of know what people are going to want to know. I said I was pleased about that, as I didn't want someone watching a 'how to' video on You Tube while he was doing it, at which he and the other Doc in there too both laughed.
He said he likes to meet his patients first, so that he can put a face and personality to them, and decide if he likes them or not!
Then the date got mentioned, and I said it was actually both our birthdays that day. He glanced down at my records,looked up at me and said, 'So it is. Happy Birthday'. Then he did a sort of double take, looked back down at my records, then back at me. He said ' I'm actually shocked. I would never have tagged you as being 60, I'd have said closer to 40,' so I told him I thought we were going to get along fine, lol.
I've also had my MRI, on the 11th, instead of the 22nd. I had a call from the MRI dept, saying they'd been told to get it done ASAP. I guessed that one of the surgeons was on holiday the week before my op, so would not get the images to look at beforehand. It turns out that's Mr Grainger, he said he's on hols for the next two weeks, and I'm his first surgery after returning.
So now it's just wait and see if any of the remaining two surgeons want to see me between now and then, other wise its just two weeks tomorrow!
I've also had my admission letter, and my Pre-Op assessment appointment, for Thursday 27th August.
Thursday 6th of August 2015
Another update, and now we are getting somewhere. I had a call yesterday from Mr Radleys secretary, with an appointment to see him today. Apparently he's on holiday for the next two weeks, but wanted to see us beforehand. I was a little stressed before we went, as the last appointment went so badly, so as soon as we sat down, I spoke to him about it, and explained that when we came last time, we knew absolutely nothing regarding this surgery or the repercussions, and so as far as we were concerned, it was just shock on top of shock. At this point, he apologised, and as I'd suspected, he thought Mr Patel had already spoken to us so we had some knowledge of what to expect. The fact that he apologised brought him up a lot in my estimation.
He carefully talked us through the surgery, and what to expect, to be fair, answering a lot of my questions before I had to ask them. He also showed us the PET scan image, which shows up the cancer as a glowing area in the image. You can quite clearly see that it is indeed growing into the bone, there is no doubt about that. The good thing is that there are glowing areas nowhere else, so absolute certainty there has been no spread. So, he has set a date for the surgery on the 2nd of September. He talked us through the team being assembled for the op- the anaesthetist, himself to do the bowel side of the op, an Orthopaedic surgeon for the bone removal, a neurologist to look after all the nerves, and a plastic surgeon to move some muscle and skin. Just hope they remember to save room in the theatre for me!
He did want to admit me a couple of days beforehand, but I asked if I could possibly be admitted on the morning of the surgery, as I was very worried about it, which he understood, and I didn't want to be on my own the night before. He agreed to this, saying that the reason for going in early was because the Orthopaedic surgeon, and plastic surgeon as well as the anaesthetist, 'like to see their prey before they are on the table' in his words, which did make me laugh. If I was willing to attend on other days to see them, then that would be ok. My other big worry had been an epidural- I was really freaked by the idea of someone going towards my spine with a needle, and knew I would really freak out. He told me not to worry about that, as although I would have to have one, they did it when I was under the anaesthetic, so again, that put my mind at rest.
I asked about how my stoma might change, as what I have now is a loop colostomy, and it will be altered to an end colostomy. He asked me about how mine functions now, whether I get any problems. I said no, it's always functioned perfectly, with no issues. So he said that what he will do is just cut it off behind the stoma, and staple it closed, leaving the actual stoma as it is now. He said that as it was working fine that was the best solution, and anyway, if he started tampering with it, it would probably never work again!
I should be out of bed the following day, and he said to expect a 10-14 day stay, probably more towards the 14 days than the 10. It will leave me with a scar at the base of my spine, and one on my stomach, but as I already have a vertical caesarian scar, he will make use of that.
So I left this appointment in a much happier frame of mind, and much happier with dealing with him.
At least now, once the surgery is done, I can start recovering properly, rather than just getting well enough for them to throw something else at me.
Friday 31st July 2015
OK, realised I hadn't updated for a few weeks. Mainly because there was not much happening. We had had an appointment come through to see Mr Radley, on Thursday the 30th July.
You can imagine my mood when on the Tuesday 28th, I get a letter off him cancelling that appointment, as he wanted a new MRI and a PET/CT scan beforehand, to give him up to date info. Which I can fully understand the need for, but why didn't he organise these after we saw him last? To say I was fuming is an understatement! On past experience, I've generally waited around 6 weeks for scan appointments, so was steaming that this looked to be pushing everything back by a couple of months. So much so, I was planning on going back to work on Monday.
Anyway, he's clearly requested these appointments as urgent, as later on Tuesday I had a phone call from the PET centre at the QE, with an appointment for Thursday morning!
I'd not had a PET/CT scan before, and the difference is that they inject you with a small amount of radioactive glucose first,then you have to sit and rest for an hour to give it time to circulate around your body. Apparently, cancer cells metabolise glucose differently to normal cells, so this scan shows up any odd stray cells that may be elsewhere.The actual scan took 25 minutes, and it is like a normal CT scanner- not like the MRI tube.
Hopefully, Monday I will find out when the MRI is- I have to give them a call.
The going back to work isn't going to be happening either, my GP said he would not sign me as fit without the OK from Mr Radley, and he doubted that he would give it. He'd had a copy of the letter I'd had, and in view of how fast the PET scan had been arranged, and that it's clear Mr Radley wants to get this surgery organised asap, he said Mr Radley would want me off work for a couple of weeks beforehand anyway, to minimise the risk of me picking up any infections from anyone which could result in the surgery being cancelled. And I certainly don't want any cancelling of the surgery done.So thats where we stand at the moment, slightly in limbo again, which is a nuisance. The only upside to this is that mine and Dougs birthday is on the 14th of August, and I was really worried I could end up being in hospital for it. And yes, you did read that right- we share the same birthday!
Sunday 5th July 2015
Well we had a brilliant holiday, 10 days of relaxing- and we did relax and de-stress. In fact, it wasn't until the last couple of days that the upcoming surgery started to play on my mind. That thought did make me feel like I didn't want to come back, just wanted to find a cave and hide in it!
Fully expected to come home to a letter from the QE, to be honest, although as it turned out, we didn't. Did have an appointment to see my own consultant, Mr Patel though, on Thursday 2nd though.
He had now had information back off Mr Radley, and the basics are that Mr Radley is certain that the tailbone is involved with the cancer, and that the surgery Mr Patel would do, scraping the tumour off the bone, would not be sufficient to guarantee removal of the cancerous cells. It also means that the colostomy will need to become permanent, so there will be no reversal at a later date.
That had been one of the things that upset me at the initial meeting with Mr Radley- I'd always been expecting a reversal would be done, and being told he'd be making it permanent so bluntly was a shock.
However, one of the good things to come out of our holiday is that I now have an acceptance of the need for it.
One of the things we did on our break was to hire a quad bike, and go up into the mountains for the day, just exploring the countryside. This made me realise that I have the freedom to do things like that- uncertain, or poor bowel control would mean things like that just would not be possible in the future. I would always need to know where the closest toilet was. That would definitely not be a good quality of life.
The fact is that Sid doesn't stop me doing anything- on the contrary, we flew with no problems- I had a 'no excess baggage to be charged' on our booking, as I was carrying colostomy medical supplies, we also got upgraded for free to extra legroom seats,as I'd recently finished Chemotherapy! All courtesy of a phone call to Monarch airlines, who we were flying with.
I can swim, I didn't actually bother, but I could have, as I had tiny little Stoma Cap pouches. I found suitable swimwear on the High Street, without having to pay high prices from a Colostomy supplier.
My ruched swimsuit- which is all thats needed,the gathering makes the pouch invisible, was £8 from Primark, instead of the £38 in one brochure! I also got a bikini with a shorts bottom, which has a little skirt around it from Tesco for the same price. Both concealed my pouch, both 'normal' size, and mini ones, with no difficulty. So I can still wear typical holiday gear, and swimwear, without a problem.
As Doug pointed out, which also helped to get my mind clear, is that with a permanent Stoma, I will be exactly the same as I am now, just without the cancer.
We are now waiting for an appointment to see Mr Radley again, which Mr Patel said should be through in a few days, to talk us through the surgery. Apparently, this is major, major surgery- 7/8 hours of it, plus 10-14 days in hospital afterwards. Trust me eh? never do things by halves.
When we saw him the first time, they were pretty keen to get this done, so I'm not expecting it to be very long before I go in, I expect it to be during July.
Monday 08th June 2015
Okay then. Here is the update promised on Friday- it didn't get posted then for reasons you will see in a moment. To start with, I was seeing the Senior Consultant, a Mr Radley, at another hospital. My surgeon, Mr Patel, had sent him my scans, and asked for his opinion on whether or not the tumour was actually attached to my tailbone.He did say, that if indeed it was, he would ask Mr Radley to do the surgery, as removal of the tailbone needed to be done by a surgeon experienced in this op, not just an experienced surgeon. Mr Patel was expecting to hear back from him, but what happened was that I got sent an appointment to see Mr Radley.
So we turned up, and the appointment went horribly.
At first we were seeing his registrar, and he started talking about nerve problems/mobility problems after surgery to remove the tailbone, and that after 10-14 days in hospital, I might be discharged to a rehab unit! He also said the case had not been discussed by the MDT team yet, even though we'd been told they were reviewing it on the previous Friday. I told him this, and that we'd come to this appointment, expecting to be given answers. Sitting there a bit stunned, to say the least, at this point.
Then Mr Radley came in, and said that looking at the scans, he was quite sure that the tumour was not attached to the bone, and that Mr Patel would be able to do the surgery. Then he examined me, and said he'd changed his opinion, and it probably was attached after all. Then he started talking away, about the removal of the tailbone,and bear in mind, I'm still stunned to a point from what the registrar told us at the start.Then I realise, from a comment he made, that he was intending to make my colostomy permanent. Not that he said it straight out, I had to specifically ask him the question, to clarify what he said. Now I'm really distressed, stressed and worried. He says it will be because of lack of bowel muscle control after the removal, it will need to be permanent.
The worst part of this was they were talking to us as if we knew all the implications of this situation, and never once stopped to ask us what we knew. Which was exactly nothing.
My surgeon had been expecting to hear his opinion, then talk us through the situation. Mr Radley said he'd send all his findings etc to Mr Patel that evening, as I'd said I wanted to go back and talk to him. Anyway, we left the appointment both worried, scared and upset.
On Friday morning, I phoned Mr Patels Colorectal Nurse Specialist, Sandra, and left a message on her answer system, telling her how upset and worried I was, and asking if we could get an appointment with Mr Patel. She phoned me back, and said Mr Patel said for us to go down to the hospital at 10.00 on Monday morning, and he'd talk to us.
Well, we got down there today, and Mr Patels first words were that he hadn't had any information off Mr Radley as yet! Which didn't help, as he could not specifically answer some things. He could however explain a lot of stuff in general, and we came away much more settled, and better understanding what the implications are.
He explained the reason for making the colostomy permanent is that because this surgery is a lot more radical than originally expected, it may be necessary to remove more bowel, therefore not leaving enough to rejoin, for starters. He also said that certain nerves run alongside the bowel, and it is possible some may have to be removed to make sure no cancer cells are left behind to regrow. It is also possible that even the most careful surgeon may damage some nerves in this area, just by the nature of the surgery to remove the tumour.Both problems can make bowel control difficult or impossible, in which case he said, a stoma is better than needing to go to the toilet 10 or 15 times a day, which I understand. He did say that a permanent Stoma is not 100% certain, but much cannot be known until they actually do the surgery. If a rejoin is possible, it would not be for 12 months or so, following a number of 'clear' scans. So now we understand the reasons behind this, and also what the registrar was talking about with nerve problems.
Regarding the mobility and rehab issue, he said that depends entirely how well you are doing after the surgery- if you are finding it difficult walking etc, then rehab is the route they take. But he didn't think this was likely for me, as I bounced back so fast after the colostomy, and handled the chemo so well.
So what it comes down to is that I may well be facing having a permanent colostomy, and am facing more radical surgery, with a longer recovery period than we'd been expecting.
The hardest part of this is that all this to me feels like its happening for no reason. Obviously, thanks to the temp colostomy, I have no pain/discomfort or problems, so I feel absolutely fine. On top of that I feel like I'm being backed into a corner, with no options.And I hate being backed into a corner. Thats when my instinct is to dig my heels in, and make your average mule look positively co-operative!
Reality of this situation is that I just have to deal with it.It may not be the solution I wanted or expected,but you can't always get what you want. It is what it is, and they will have to do what they need to do, for the surgery to be curative, so we can draw a line under this and get on with our lives. Because that's the goal- get rid of the cancer, not live under the shadow of it returning because not enough was removed this time round.
If only the Consultant and his registrar had thought to find out how much we actually knew, I'm sure they would have handled the meeting better than they did.
Last thing my surgeon, Mr Patel said as we were finishing up was that he trusted Mr Radley and had every confidence in him, and he needed me to have faith and trust in him too. Because he will have to be the one that does the surgery, as he is the experienced surgeon, and his hospital team the ones skilled in handling both this op and the post op side.
So, I'm in a better place than I was on Thursday!
On Friday, we are off to Donnington, for Download,this weekend, and all being well, next week we are going to Crete for a week or ten days.He still wants us to get a holiday, we are just waiting for work to get back to Doug, as booking holiday at this short notice is bending the rules a bit. Normally it should be at least 4 weeks notice of a week or more holiday, but they know the circumstances, and have been very accommodating so far.
Quick Update: Work have ok'd the holiday, just booked to go to Hersonissus,Crete, for 10 days, next Friday! Yippee!
Thursday 28th May 2015
I tell you what, it feels like this has been going on forever! I really want it done with now, so I can get my life back.
The MRI on my liver went ahead last week, thanks to Diazepam, and being able to have Doug with me. I actually think it was more Doug than the Diazepam. For me, it's the feeling of being trapped in a small space, unable to get out. Knowing Doug was there, I knew he'd get me out, so the panic wasn't there. Talking to the radiographers after, one of them was exactly the same. She said she'd had to have one last year, and she needed so much Diazepam before hers, her speech was slurred for three days! She also said that it was the feeling of not being able to get out that got to her, if she could have had a button in her hand that you could press to bring the table out, although she wouldn't use it, it was the knowledge she could that would have made the difference.
Anyway, I had a call today from Sandra, the Colorectal nurse, to say Mr Patel said the liver scan came back clear, nothing there at all. So that's a huge relief. I have an appointment coming to see Mr Simon Radley at the QE next week, who is the Consultant my surgeon sent my scans to for a second opinion on whether the tumour is attached to my tailbone or not. As I'm going to see him, I'm guessing either it is attached to the tailbone, or he cannot be sure from the scans. In which case, I'd assume he is going to do the surgery just in case it is necessary to remove some tailbone. I Googled him when we came back from my recent appointment, it seems he is THE top man for this at the QE, and in the Midlands in general. He trained at Birmingham Uni, then at St Marks in London, worked in the USA, including the Mayo Clinic,and lectures on Bowel surgery all over the place, so it seems I'm in good hands. He also pioneered laparoscopic surgery for bowel cancers, and the Enhanced Recovery programme in use today. Sandra also told me she had worked with him as his Theatre Nurse, and he's a lovely, down to earth man, so that's reassuring.
More update next week, after we've seen the surgeon.
Thursday 14 May 2015
Well, todays MRI didn't go as planned! In fact, it didn't happen at all. Not at all worried when I got there, as in all my previous ones, I'd gone in feet first, and my head stayed outside the tube. They were scanning roughly the same area, so didn't expect anything any different.
Wrong! This time I was to go in head first, and my heart sank, as I knew I was too claustrophobic to cope with this. I did try, but as soon as my head was within the tube, I panicked. So she brought me back out, and said to go to my GP and ask for something to keep me calm, and they'd reschedule it.
That tube is so narrow, and the fact that my head would be so far from the entrance scared the living daylights out of me. When I had my first one, I said to Doug then' If I'd had to go in headfirst, I'd need a sedative!'
So, Doc has given me a prescription for Diazepam, and the MRI is reorganised for next Wednesday.
The radiographer also said that next time, Doug can come in and stay with me, keep his hand on my leg, so I won't feel so isolated, hopefully. She said most people who feel like this are ok when they have something to calm them, so hopefully I'll be fine. She did say if I still can't do it, I'll have to go back to see the surgeon, and see if he can get the info another way. But I think I'll be able to cope, with the Diazepam. He's giving me enough, so that I can take one 45 minutes before I go for the scan, and take another when I get there if I think I need it, and I probably will, just to be sure I can go through with it.
Thursday 7th May 2015
Today we had a meeting with my surgeon, Mr Patel. Another mixed bag of news. On the good side, he's now happy to go for surgery, as the chemo did cause enough shrinkage. However, we potentially have a couple of problems. Firstly, last weeks MRI showed a spot on my liver. He's not sure its anything to do with the cancer, as it hasn't shown up before. It may possibly be a cyst or a blood blister. To be sure, he wants me to have another MRI next Thursday, to concentrate on that area, so they can have a better look at it.
Secondly, where the cancer is, it is very close to my tailbone. He isn't sure if it is just stuck to the fatty tissue around my tailbone, or if it is attached to the tailbone itself. If it has become stuck to the fatty tissue, which can happen as a result of radiotherapy-I remember my Oncologist told us radiotherapy can make tissue become prone to sticking to other tissue-, and one of my radiotherapy points was my tailbone,then he will remove it at Worcester himself, as it can just be scraped away. However, if its actually attached to the bone, then that will have to be removed as well. He is sending my scans to a surgeon at the Queen Elizabeth hospital in Birmingham, for his opinion, and if he thinks its attached to the bone, then my surgeon will ask him to do the surgery.So, the surgery is on, we just have to wait and find out what has got to be removed, and when. Mr Patel explained that the surgery is intended to be a curative process, so any issues all get dealt with at the same time.
He did say that he's happy for us to have a holiday, as I haven't been able to fly up till now. He said he thought it would be a good idea before the surgery, so I'm taking that to indicate it could be a month or so before surgery. We do have to wait till next week before making a booking, as he expects to get information back from the QE surgeon, so I have to phone his clinic nurse towards the end of next week. He also asked me if I was working, and I said not at the moment, I'm on sick leave. He said he was pleased about that, and would rather I did not go back to work before any surgery, as it was more important that I build my strength up. Tomorrow I have a final meeting with the Oncologist, just to check I've been ok since the final IV.
Sunday 19th April 2015
Well I had the IV chemo on Friday, and so far all ok. The tingling is back, its a lot worse on the day of the chemo, every time. Extends all the way up the arm the drip goes into, right up to the shoulder. That drops off a lot overnight though, and ends up as just from fingertips to above wrist the next day.Coming out of the hospital was strange this time, as the cooler air outside made my mouth,tongue and throat get pins and needles. I did get warned of this side effect before it all started, but as the weather has been colder up till now, I'd been wearing a scarf when I came out. With all the sunshine on Friday, I thought a scarf a bit OTT, so didn't bother. Sufficient to sat that by the time we'd walked the 200 yards or so to the car, my voice had vanished completely, and didn't come back till my throat warmed up. Still got tingly fingers today, and once you've felt this, you can totally understand the warnings about not handling cold stuff for the first couple of weeks after the IV. Doing that can cause the nerve damage to become permanent, so you'd get this feeling every time your extremities got cold- and that would be very unpleasant. It can also make it difficult to get your fingers to do what you tell them- on the day of the IV chemo, they are just almost useless! So now its just waiting for the MRI on Thursday, and hoping this has done the trick.
Thursday 16th April 2015
Just realised how long it's been since I did an update, so time to fix that. Tomorrow will be the fourth, and hopefully last, of my IV chemo. Next Thursday, 23rd, I get an MRI scan to see how much its been shrunk by. Hopefully, enough that the surgeon will be happy to remove it now.
All in all, the chemo has not been too bad. I've had no sickness, and only a couple of days of nausea through the whole thing. One of the worst bits I found has been the tingling sensation in my hands and fingers, which generally seems to last most of the first week. This means no touching anything cold- gloves on to get things from the fridge/freezer, or the tingling becomes extremely unpleasant. It can also cause the nerve damage to become permanent, and even ambient temperature things like cutlery or crockery can trigger it off. Its a sort of cross between the 'pins and needles' tingling when your foot has gone to sleep, and the stinging felt in nettle rash.
By the way, I must add that 'COLD' is a relative term, and in relation to your own body temperature at the time.So, depending on the temperature of your hands at the time is why different things will trigger it.
The other unpleasant bit is that this extends to your mouth and throat, so cold drinks and food are out for the first week or so.
They say that your red and white cell count drops around 7-14 days, which is when you are most at risk of catching anything. I feel mine dips earlier than that- after my treatments on the Fridays I find Monday, Tuesday and Wednesday I get extremely tired and want to sleep all the time.After that I start to improve again.
The reality is that chemo absolutely flattens your immune system, and you really do need to do everything you can to avoid catching anything. I caught a bit of a cold off my Hubby in the third week of my second round, which was still lingering when I had my third IV. It really got hold the following week, calling for a visit to the Docs for antibiotics, as it turned into a chest infection. I had a weeks worth, but that particular course did absolutely nothing for me, and I had to go back for a different type. Added to which I got hay fever on top of it, and I was feeling really, really ill. I was literally dragging myself around the house, I was so weak and breathless all the time. Just walking 10 feet would have me wheezing and gasping for breath. I don't think I've ever felt so ill in my whole life. I've finally got on top of it now, just dealing with the hay fever. This did mean I couldn't take my Chemo tablets whilst the antibiotics cleared up the infection, so one course of those has been dropped from the cycle. So all I can do now is keep my fingers crossed that this has done its job, and we can get the surgery over and done with. I think this will be decided at the MDT meeting on the 28th, and I should get an appointment to see the surgeon a couple of days after that.
Saturday 7th March 2015
Update after my second IV chemo yesterday, and all went well. I see now what they mean about the effects being cumulative with each treatment, as the side effects have been stronger this second time. The pins and needles tingling started much earlier this time, whilst I was actually having the IV, last time they started after it finished. Also on the way home I noticed that my vision was affected this time- not blurry, more that it was harder to focus. To be clearer, when you look at something, then move your eyes to look at something further away, or closer, your vision instantly adjusts the focal length, so you still see it clearly? That wasn't happening, it took 4 or 5 seconds for my focal length to adjust, very strange feeling. I also had dry eyes develop later in the evening. Later in the afternoon, I realised I had pins and needles in my left hand too, and as the evening wore on, it spread to my legs and feet too. Still have both this morning. Didn't have either of those last time, it stayed in my right arm, where the IV had been. Checked out my fact sheet, and they are all known side effects, with the vision one being more uncommon, so I need to tell them about that one when I next see the Oncologist, and I had an appointment come through yesterday , for the 23rd March. He will also book the MRI & CT scans when I see him, so they will come through for the end of the chemo. So, onwards and upwards, into the second cycle of four now, almost half way.
Friday 13th February 2015
Well yesterday was the first of my IV chemo, and it was a lot easier than I expected. As usual, it seems to be the after effects are worse than the treatment.
They were running behind when I got there, so it started an hour later than it should have done, and I had to sit with my arm in warm water for 15 minutes to make the veins easier to access. The nurse put a cannula in a vein on the side of my right wrist- for some reason veins on my right hand/arm always seem easier to access. It starts with an infusion of glucose, because cancer cells fed on glucose, so they get munching away when it gets to them, and are still happily feeding away when the toxic chemo gets to them. Between the glucose and swap to chemo, she gave me anti sickness drugs via the IV. The chemo infusion took two hours, and she warned me that after about an hour and a half, my arm might start to hurt, as this drug is not good for your veins. If that happened, they would get me a warm compress, which would help. I didn't get this problem, and was fine all the way through. At the end, they flush the last of the chemo through with saline, and its all done.
Things went weird when she took the cannula out. It felt as if my hand belonged to someone else! I tried moving my fingers, and it took a few seconds before anything happened. Doug said now I know what Gamers Lag feels like, lol. He was allowed to be with me through the treatment-you are welcome to have someone with you if you want.
The other odd thing was that my hand and forearm was all tingly- it feels like its been rolled in stinging nettles. That's normal, just strange to feel. It does gradually go away, it was getting milder all evening, but did make typing a bit of an art form, which is why I'm doing this today, instead of yesterday. The only email I sent last night took me four times as long to type, and I had to proof read every few words, as I was hitting the wrong keys, putting spaces in the wrong place, you name it. Not so bad this morning, at least all my fingers work, and the tingling is just concentrated around my wrist, not all the way up to my elbow. I also have to avoid getting my hands/fingers cold, as you get a nasty tingling in them, and have been told to put gloves on if I get anything from the freezer.
Came home with my two weeks of Capecetibine tablets, and its a slightly stronger dose than last time. Last year it was 1450mg twice a day, this time round its 1800mg twice. I also have anti sickness pills, one lot to take for two days, 3 times a day, and one to take twice a day for 3 days, and then another lot I can swap to if I still have any problems. None so far though, I feel fine, had breakfast with no problems and don't feel nauseous at all. I don't expect this to last the course of the treatment though, as the effects are cumulative, so I'm allowing for the fact I will feel worse after each one. Hot drinks and food taste fine, funnily enough cold drinks/food have an odd taste! And I have to drink lots of water to help flush the stuff out of my system. Even Bitter Lemon, which I love and is my go-to for getting rid of nasty tastes, has a strange taste to it. So, one down, 3 to go.
Monday 26th January 2015
So we are back from the Oncologist appointment, and I have to say I am a far happier Bunny tonight than I expected to be.
The IV chemo is not going to be anywhere near as gruelling as I was expecting. The routine will be 1 x 2hr infusion of chemo, then two weeks of Capecetibine tablets, which is the same one I took with the radiotherapy course. Then a one week break, this gets repeated 4 times, running to a total of 12 weeks. So effectively its only 4x2hours IV chemo's over twelve weeks. Then back to the CT and MRI, and hopefully this will have brought it down small enough to do the surgery.
From a lady at work who had chemo last year, admittedly a different type of cancer, and my sons chemo some years ago, I was expecting there to me more, and longer, chemo sessions.
The other upside, and yes, I know it shouldn't be something I worry about, but I was, is that I won't lose my hair. It might thin a little, but that's all. Yes, its mainly vanity, I freely admit, but it also means I haven't had to tell my Mother yet, and I can keep it like that.
I have a different Oncologist this time, but he is just as nice a person as everyone else I've come into contact with so far. Really took his time with us today, made sure we understood exactly what the treatment was, how long and so on. He also showed us the two scans done so far, which we hadn't seen yet. I can tell you its really weird looking at your insides on a computer monitor! It was clear to see that there had been some shrinkage of the tumour between the two, so some good was done by the radiotherapy.
We came away with me much happier than I had thought I would be, and obviously Doug was much happier because I was.
I also spotted on the screen that my tumour had been classified as T4 NO MO, and having just done a little research, I now know this means that T4) the tumour has grown through the lining of the bowel, NO) No lymph nodes contain cancer cells and MO) there is no spread to other organs, which we got told last week anyway.Which, according to the Cancer Research site I got the info from, means mine is classed as stage 2B.
He said the chemo should start in the next couple of weeks, so as near as I can work it out, it should end either at the end of April, or the first week of May.
I'm guessing now this means it won't make me feel quite as lousy as I thought!
Sunday 18th January 2015
Had a meeting with the surgeon last Thursday, and the news was mixed, to be honest. On the positive side, the cancer has not spread to my Liver or Lungs, its just confined to the Rectum, which is great news. On the downside, the radiotherapy has not shrunk it as much as he would want before removing it, so I need to have another round of Chemo to shrink it. This one will be IV, which is going to be tougher than the first round of tablet chemo. Don't know any more than that, we're waiting for the appointment with the Oncologist to come through.So, disappointed that this is going to go on for longer, and with the need for more, stronger Chemo, but grateful for the fact that the cancer hasn't spread. You have to take what positives you can from this, there really is no other way of dealing with it. I'm guessing now that this will add another couple of months at least to the timeline. There will be the chemo, then more scans to make sure its worked, but don't know how long after the treatment finishes the scans will be.The upside is that it will be at our local hospital, which is only a 10 minute drive away.
I haven't gone back to work yet, I keep thinking that maybe next week I'll be up to it, but the reality is that I would love to be back at work, I feel like I should be back at work, but I know I would not last more than a couple of hours, so it's stupid to even try.
The other real downside here is hair loss. I'm expecting that will be the case, but don't know for sure yet. It does mean, if that happens, apart from how much I will be upset by it, I will have to tell my Mom about it, I won't be able to hide that. One of the main reasons I haven't told her yet, apart from not worrying her, is that, as I said at the top, she is 82, and for the last don't know how many years has lived in a 3 bed house. She always said she wouldn't move, but over the last 6 months she has finally started to admit to struggling to cope with the stairs etc, and is starting to think about moving into a bungalow. I will be very happy when she does, as I do worry about her having a fall on the stairs, especially as she has cats! Whenever she has mentioned the idea, I've been very encouraging, she knows we will hire a van, and move her, so for me the sooner she does it the better. I also know that the minute I tell her about this, she will drop the idea like a stone, as she won't want to add to our stress by having to move her. So that's another reason to hope I can keep it from her for a while yet. She was talking yesterday about speaking to someone at the council, so I really want her to get to the point its organised before I have to tell her.
I thought also here I would mention some things I have noticed over the last couple of months- my taste buds seem to have changed a bit, for starters. For someone who practically lived on coffee- my mug never went cold- I am really going off it. One cup is enough for hours now, if I make a second, I rarely drink more than a quarter of it. I'm not a tea drinker, but do intend to try some of Hubbies Herbal Teas. I've tried them in the past and did not like them, but who knows? Big love is Bournvita- I can get it online, as its no longer available in supermarkets, but I love it. Rather like Ovaltine, if you've not had it, but I find Ovaltine a bit too sweet for my taste.
Secondly, I can't believe how much I feel the cold now. Previously, I've been a sleeveless top 52 weeks of the year person. Not any more. A few weeks ago I actually bought myself a coat, scarf and mittens. I haven't worn a coat for more years than I can remember, never ever worn a scarf, and couldn't say when I last wore gloves.And that is something I do know will get worse once the chemo starts, so there's something to look forward to.
Thirdly, tiredness. More accurately, lack of stamina. This one is, for me, probably the hardest to cope with. I really struggle with how little I can do before I am worn out. Its the main reason I'm not back at work, I know I could not do 5 hours on my feet. Just half an hour out shopping with Hubby, and I need a lie down when we get back. Equally, I need to get out occasionally, to stop me going stir crazy. Bit of a juggling act, enough time out to make it a break, not so much I'm exhausted.I hate the feeling of being limited to what I can cope with, of knowing some things are beyond me right now. I'm having to learn to be accepting of things as they are, and stop getting depressed because they are not how I want them to be.
So that's how things stand at the moment - like I said, the only really good news here is that it hasn't spread, and to be totally honest, if it was a choice between how things are now, and the radiotherapy having shrunk it, but it had spread, I'm happy that its the way it is.
Saturday January 10th 2015.
So, just to keep everything up to date, here is where things stand right now.
This week just gone, I had my MRI scan, and my CT scan.I also had my final meeting with my Oncologist, Dr Sothi.She was quite happy with how things had gone, and how I was in general. She did say that whether or not I needed to have another round of chemo would depend on what the pathology reports from the tumour they remove reveal. If they think it necessary, then there would be a 'mopping up' round later on, and this happens in about 50% of cases, so we shall see. If I do, it will be tablets again, with maybe one infusion, and done locally at the Alex, which will be easier. From everything we've read, we did already know this was a possibility, so wasn't a surprise.
Also had a call from Mr Patels Clinic nurse, Sandra, and my case will be discussed on Tuesday at the next MDT meeting, so I'm guessing I will get a date for the surgery over the next week. Dr Sothi said its usually 8 weeks from the end of the radiotherapy, which is next week, and she expected it to be in the next couple of weeks.
I will be glad to get this bit done,as I know I will be sore and uncomfortable for a few weeks, but equally I know it will get better every day, with an end in sight. I'm just so fed up with feeling uncomfortable, or in pain now, despite the scary idea of surgery, I want to start getting my life back.
Thursday 18th December
OK folks, another update. Three weeks now since the end of the chemo/radiotherapy, and I can finally say I am starting to feel like a human being again!As you will have seen from the last update, I've been through a ridiculous amount of painkillers over these last few weeks. One of the side effects, especially of the Tramadol/morphine mix is constipation. Not good normally, but with a stoma? You don't want to go there. Trust me. Actually realised back last week that I was mainly taking the painkillers for pain caused by the constipation side effect of the painkillers! How crazy is that? So, I'd been gradually lowering the dose as you can't just stop those particular drugs, and got myself off them,and bought a whole load of fruit, which I smoothied. A bowl of that, two Prune Activia yoghurts and half a bag of Liquorice Allsorts finally got Sid back in working order.Its the main reason I don't eat fruit. It really does not like me at all. Always had that effect on me, long before these problems.
The pain problem I have now, is I think mainly caused by all the cramping spasms I've had in my buttocks- sciatica! All down my right leg. Keeping pretty much on top of that with the co-codamol, and Ibuprofen gel rubbed in.It has really been getting me down, I will admit. Kept getting up in the morning, hoping that today I'd feel a bit better/in less pain. And it wasn't happening. It just felt so relentless.I have never been so miserable, ever. I'm normally never ill, and very active, so this has driven me crazy. And my poor Beloved Hubby- I have felt so sorry for him. Its been really upsetting him to see me in pain, and he can't do anything to help me.
Anyhow, I actually do feel now like I may be coming out the other side, the only problem I have to solve now is a serious skin problem around the stoma. It seems like I've developed an allergy to the adhesive on the particular pouches I use- what next,?lol. The skin is really red and a little sore- it looks like severe nappy rash. Its definitely the adhesive, once the pouch has been on for a short time, the glue starts to go really sticky and gooey. Funny thing is, this started as soon as my radiotherapy finished. I do remember reading somewhere that it can cause skin changes, and that appears to be whats happened. In the morning I'm going down to the hospital to see the Senior Stoma Nurse, Jane, who should be able to give me some samples of other pouches to try out, and make sure the skin isn't getting any sort of infection.
Final note, I now have my scan appointments come through. My MRI is on Tuesday 6th Jan, and my CT on Friday 9th, so that means my case will get discussed at the MDT meeting on Tuesday 13th, which means either at the end of that week, or the beginning of the next, we should have a date for the surgery.
Still finding it a little shocking how my energy levels will drop to zero so quickly, and how little stamina I still have. But, baby steps and all that. So I haven't been back to work since I finished the treatment. I know I would be lucky to last for an hour, let alone 5.
Thursday 4th December
Time for a new update, I think. As you know now, I had my last Radio/chemo on Monday 24th November, and expected to feel pretty crappy for the next few day, tiredness and so on. What I did not expect was to wake up on Wednesday in a whole world of pain. I did sleep a lot Sunday, Monday and Tuesday, and expected this would be the way of it. Wednesday I started getting cramping pains regularly, as if my bottom muscles were squeezing really hard onto a solid object. So the radiotherapy was obviously doing its job of shrinking stuff, just no-one warned me it would get painful. Anyway, got through Wednesday with the help of Paracetamol, and on the night I found some Paracetamol and Codeine I'd had when I fractured my shoulder, so they got me through the night. Thursday I was still in pain, so I rang the colorectal nurse in my team, as I wanted to be sure the pain was a normal thing. Which it was, so she advised me to go the my GP for some painkillers and an anti-spasmodic. He prescribed me an anti-spasmodic, and co-dydramol for the pain. Friday I'm back there, as they are doing nothing for the pain at all. So he gives me Co-Codamol, and Diazepam. In less pain Friday night, Saturday evening its back with a vengeance. Struggle through Sunday, back at Docs on Monday. Now he gives me Tramadol. says I can take Paracetamol or Ibuprofen with it as well if I need it. Helps a little bit for a day or two, then Wednesday evening its got to the point that I can't sit/stand/lie down for more than a couple of minutes. Back to Docs Thursday morning, and I now have Morphine to take with the Tramadol. I'm really hoping this combo works for more than a day or two, although It does mean I'm signed off work next week, as Morphine and machinery are not a good mix. I've been sat typing this for about 20 minutes so far, and I'm not in any pain.I think thats the longest pain free period I've had since Saturday.
I really would have appreciated being warned about the pain- firstly I didn't know if it was normal or not, and second I wouldn't have expected to be getting back to normal by now!
So now its waiting until I get my MRI and CT scan appointments, which should be end of December/beginning of January. I'll get one more appointment to see Dr Sothi, just so she can be sure I'm ok, and then she will pass me back to the surgeons.
My Treatment Timeline
Wednesday 26th November
So, as you can see from the calendar, I'm all done with this stage. Apologies for being a bit behind with the update, but I have to say I've been totally wiped out for the last few days. Been sleeping for 18-20 hours out of 24 since Sunday. Today I am starting to pull back, I think. Well I'm still out of bed, and I've been up for three hours! Last Thursday I felt low, just a little bit of a lot of side effects in one go. Each one nothing on their own, but all together? Also developed sore feet last week, a side effect of the Chemo, and one they have to be told about. I was told to stop taking it for a few days until I saw the oncologist, and given a prescription for Vitamin B6 to take for 6 weeks. When I saw her Thursday, she said it was ok to return to taking them, as I only had them until Monday, but to stop if it got worse. Sunday it had started in my hands too, so I stopped them again.Today my hands feel a bit better again, and I don't think my feet are as sore as they were. So I haven't been to work since Wednesday last week, possibly I may go in tonight, I will see how I feel later. Next week I have a weeks holiday, so that will help. Glad this stage is finally finished, between the treatment and the travelling, we are both pretty worn out. Now I have to wait 6 weeks to have a CT and MRI scan, which she said should be end of Dec, first week of January. She said she will see me once more to make sure I'm ok, then I get handed back to the surgeons. Still get tired really easily, I get wiped out just climbing one set of stairs! Hopefully I will be a little closer to normal by Christmas.
*** Just a quick add on edit here, I did try going to work tonight, as I felt ok- epic fail! Ended up coming home in under an hour. Cannot believe how fast my energy drained away. So I've learned my lesson, won't be going in tomorrow, and I have next week as holiday, so hopefully I will have pulled back somewhat by the time I am due back.
Monday 10th November
Another update time, I think. As you can see from the calendars, I am now over half way through, just 11 days of radiotherapy to go.Things are still going well, my Oncologist, who I saw last Thursday, was pleased with how I'm doing, and said that as long as I still feel well this week, I have no need to wait and see her this Thursday, I can see her in the final week when she will organise the CT scan appointment for 6 weeks time, so I'm guessing that will be between Christmas and the New Year. I've been extremely lucky in that I've had very few of the side effects from the treatment- the only thing I can say I've really had is the tiredness.
That's the strange one, to be fair. When someone says tiredness, you expect that all you will want to do is lie about, and go to sleep. For me it hasn't generally been like that, although I did feel that way last weekend. For me it seems more to be lack of stamina- I can't walk as far as I would before without needing a rest. We have a Victorian house, with 3 levels, and our bedroom is the attic level, and at the moment I can't actually do the two flights of stairs in one go- I have to have a rest half way up. I also definitely can't do as much as before without having to have a sit down. I do try and get in some short walks as often as I can, to try to build my stamina back up slowly, or at least stop it dropping too far. We only live a 5 minute walk from our shopping centre, and I can do that in a circular route, so I go downhill to get there, and can do downhill coming back which gives me a half hour gentle walk.Plenty of places I can have a sit down if I feel I need it too.
Also last Thursday I had a meeting with our Occupational Health Nurse at work, just to see how I was doing. She saw me about 3 weeks ago, when I was getting ready to come back, so this was a follow up to make sure I was not struggling. She also was happy with me, especially as she saw that a couple of nights I had not gone in, feeling unwell or tired, so could see I was being sensible. She said she was happy to recommend that I continue doing half shifts till I finished my treatment, then gradually start doing a few more hours, as she didn't want me to over exert now, and suffer for it later, and I was happy to agree with her. She will see me again in 5 weeks, and by then I should hopefully have the date for my CT scan, so we will know better what's happening.
Might sound mad, but I have to book a weeks holiday from work, first week of December, as I still have 57 hours worth of holiday to use up before Christmas, so I have a week at work after my treatment finishes, then a week off, then two weeks back at work before we break up for Christmas, and I STILL have to use up 20 hours somewhere!
Feeling tired last weekend was the first time since all this started that I can honestly say I've felt there was something wrong with me, which is pretty good going, I think.
On Saturday the 8th, I spent the day at the NEC, for the Hobbycrafts show. Took my time walking round, and had plenty of sit down stops, and managed fine. Met up with two of our WOYWWers, Linda and Ali, which was nice.
Friday 31st October, Halloween
A short update now, as I am two weeks into the chemo/radiotherapy. Its been so far, so good. Can't really say as yet I've had any problems with side effects. I did feel a bit nauseous on Tuesday afternoon, and ended up getting Doug to bring me home from work not long after we arrived, as I was sure I wasn't going to last till 2.00am. The anti-sickness pills they've given me didn't do anything for it, but I had bought a bag of crystallized ginger in readiness, as that is supposed to help. And it worked like a charm! Within 15 minutes of eating some, the nausea had gone. Had a bit of nausea on Wednesday afternoon too, had some more ginger, and all ok. Been ok for the rest of the week. I will admit to feeling a little more tired, and I'm sure thats as much to do with going back to work after being off for 7 weeks as the radiotherapy. Only working till 2.00am, I can come home and get extra sleep, which was how I'd figured it out beforehand, so that seems to be working well.
I really think the worst part of this is the travelling- most of my appointments are at 3.40, and its roughly 45 minutes to get there. The trouble is that all this week they have been running at least an hour late when I get there, so it's close on 5.00 pm when we leave, which drops us straight into the rush hour traffic, and what should be 45 minutes home turns into almost 2 hours.Apart from the first day last week, I was seen right on time each day, so we were out of there before 4.00pm, and missed the worst traffic. Today I'm 11 days into the chemo, and 10-14 days is the point at which your immune system hits the floor, so just have to keep fingers crossed that I avoid contact with anyone with any nasty bugs for a few days.
By Wednesday next week, I will be half way through, so its going quite quickly, to be fair.
Wednesday October 22nd 2014
So, the two calendars above are my timeline for the chemo/radiotherapy.I shall be crossing each day off as it happens, so I can see myself progressing towards the end. Thanks to my DIL Becky for this idea, by the way. 5 days a week for 5 weeks, plus 1 day as we started on a Tuesday for the radiotherapy, and the chemo tablets I take every day weekends included, so 35 days of those. The chemo is worked out by weight, and I have to have 1440 mg of the drug twice daily. They come in 500mg and 150mg tablets, so I have to take 2x500 and 3x150 tablets, twice a day, as the closest they can get to my dosage. I'm glad I'm only 10 stone 9lbs, (149lbs),lol. Two days of pills and treatment so far, and so far so good. No ill effects yet, but its early days. I should have a better idea of what I'm going to feel like by this time next week, I think. They have given me my whole supply of pills, plus anti sickness and anti diarrhoea pills, just in case. I think I've got more tablets than Boots!
In amongst these treatments we have 3 assessment meetings with the Oncologist on the 6th, 13th and 20th of November to see how things are progressing.
First treatment was a bit of a nightmare. I'd been told I needed to have a full bladder, both to help with the imaging, and to help avoid radiotherapy waves causing damage to the bladder. So I drank a litre of water on the way over, its a 45 minute journey from home to the hospital. My appointment was for 12.30, and we got there 15 minutes early. The board told us they were running 45 minutes late, and by now I really did have a full bladder! Doug had got us coffee when we arrived, so by now I had to go relieve some of the pressure! About half an hour later, I got called away by the pharmacist, to hand over the pill mountain, and give us all the instructions and information leaflets. I presume this actually lost me my place in the queue, as it was 2.00 by the time I had my radiotherapy. It had also necessitated 2 more visits to the loo! Even then, when I got into the therapy room, and had to lie on my tummy, it was agony. I had to go relieve the pressure a bit again before we could continue. It was still quite painful lay down on my tummy, and I was clenching muscles like crazy to stop myself peeing on the table! The poor nurse thought at first I was shaking because I was terrified, I said I am- terrified I'm going to wet myself! She said my bladder just needed to be comfortably full, so I vowed I was not going to start drinking water so early on the next visit. Its very difficult to get this right- how much is full? and then it depends on what your waiting time will be. If I'd known how long I was going to be there, I'd have gone to the loo properly, and started again.
Today, Wednesday, I had 3 coffee's at home before we set out,the appointment was 12.30 again, and was going to start on the water when we got about 15 minutes away from the hospital. As it was, by the time we got that close, I felt like I would be glad of going to the toilet, so didn't touch the water. We got in and sat down, Doug went to the cafe and got us both a coffee. Just as he sat down with it, I was called in, so we were on our way home again at 12.50. The nurse said the images came out fine, so I had enough water in my bladder with what I did today, so thats the plan going forward.
Still feeling fine, not had any problems apart from the chest infection I picked up a week or so ago. That got cleared up with anti biotics, so at least it hasn't interfered with the treatment.
Had a whole list of possible side effects of the chemo, most likely ones to suffer from are diarrhoea/ sore mouth/ sore hands and feet. Also tiredness from the radiotherapy. So thats a few things to look forward to, lol.
Sunday 5th October 2014
Nothing new to report yet, everything seems to be going well. To be totally honest, I feel like I've had a 4 week holiday from work so far. I've been well, fit and up to doing pretty much anything, although I've been good and not done anything I was told not to. My Community Stoma Nurse is due to visit me again on Tuesday 7th, to see how things are going, and I have to have some blood tests on the 13th, ready for the Chemo/radiotherapy to start.Yesterday we went to West Midland Safari Park- Beloved Hubbies idea, he said I need some treats for having to spend all week in the house!
Handling the Colostomy has been far easier, and nowhere near as traumatic as I'd assumed it was going to be. It definitely does seem that taking note of all the advice you are given makes things as easy as possible.For instance, eating small, regular meals.This has actually been one of the harder things for me to get in to,as all my life I've been an 'eat when I'm hungry' person, rather than at regular meal times. However, by having regular mealtimes, you get into a routine of when your Stoma is active, and when its resting. Just as most people have a fairly regular bowel habit, so your Stoma gets one too. One thing you do have to realise is that you have no control over the Stoma- you can't hold it! And it may not all happen at once, it may 'go' two or three times.
I have my breakfast about half an hour after I get up, lunch around 1.00pm, and evening meal around 7.00pm. This routine has resulted in Sid getting busy within an hour of me getting up in the morning, so I do my clean-up and change after that. He does very little after that, and if we are going out in the afternoon, I will probably clean & change him before we go out, otherwise I leave him till late evening, so I clean and change him before going to bed. Sid does absolutely nothing overnight, which is brilliant- I've not had to worry about leaks etc while I'm asleep.You can buy a washable, waterproof mattress protector, which we did before I came home, just in case of accidents, but as I said, I've been fortunate here. It takes me maybe 5-10 minutes to do the cleaning and changing, and having got used to doing it, and all the swelling going down, I've had no problems with the pouch coming away from my skin.
I've personally found it easier to do the clean/change whilst standing up- my first Stoma Nurse recommended putting a mirror on the wall/door facing the toilet and doing it sitting down, but I found that awkward. As you are only supposed to use plain water for cleaning, I find it easier to put water in the sink, hang the disposal bag over the edge of the sink hooked onto the tap,and do my cleanup like that. I can also see perfectly easily without a mirror to replace the pouch, but of course this may depend on where yours is sited.
If smell bothers you, or you are concerned about others using the bathroom after you, can I suggest Incense sticks? I light one before I start, and know the bathroom will be fine afterwards.
Another thing you do have to consider is what you can eat, and what you should avoid. The booklets you get from the hospital, and with your Stoma stuff will give you lots of advice- you don't want anything that will cause a blockage.Also, remember that food does not stay in your system as long as it would normally, so anything difficult to digest is out. Nor can you eat as much as you did before.Things like salad leaves/ fruit and vegetable skins are to be avoided. You can have baked potatoes, but can't eat the skin! Thats the best bit! I swear, a baked potato, skin and all, is going to be my first treat after all this is over. Nuts are another no-no, because of the sharp edges after chewing, and again they are not easy to digest. Onions/mushroom/peas are also a problem, but as long as the mushrooms and onions are very small pieces, and chewed really well, you can be ok with them. Same goes for the peas- its the shell that is the indigestible bit, so no swallowing them whole. Sweetcorn will also cause blockages, as will the seeds from tomatoes. Then consider the foods likely to cause wind- baked beans are right out! I know, I tried them.I shan't be going there again till this is reversed. No warning, and you cannot control it.
Going back to the subject of smell- when you first get the Colostomy, when you remove the pouch, the smell is awful. Think rotting meat. Honestly, its foul. The nurse told me that would go, its the dead skin layers on the stoma being shed. It looks black and horrible at first. The skin sheds, the smell really does go away then, and it ends up a healthy red colour.So don't worry. But you will want plenty of Incense sticks or air freshners for a week or two.
I've posted the last two pictures as a demonstration for anyone worried about visibility- you really cannot tell that I have a Colostomy- and my clothes are Leggings and a Lycra top- quite close fitting. The leggings are actually good for this, as they hold the pouch securely against your body.
Just as a refresher, I'm going to repost here all the supplements I'm taking, with a few modifications since I first posted.
Sunshine Vitamin D ( Seven Seas Brand)
Immune Defence - fish oil and Vitamin C ( Seven Seas)
B-Complex- +Vitamin C
Milk Thistle 8580mg
Curcumin X4000 ( contains Meriva)
Perfectly Healthy Ph Plus.
The Barleygrass powder got dropped fairly early on, as it was upsetting my stomach.
The Quercetin I didn't start, as one of its contra- indications is that it can increase bleeding after surgery.This is a good example of why you need to research carefully what to take.
The Apricot Kernals also got dropped after the colostomy, as nuts are a no-no.We also bought a water filter jug which alkalises the water, to replace the one we used to use.
My Consultant, Oncologist and the Hospital Pharmacist have all been ok with what I'm taking. As I said before, and they confirmed, there is no hard scientific evidence that any of these help. All the evidence is in University studies in medical Uni's. There is no money in any of these for the drug companies, so they are not going to invest in them. I did read recently though, that a couple of hospitals in the country are going to be doing some trials with Cucurmin.I've also added Evening Primrose Oil. 1000mg, to this list, as its supposed to be helpful with cancers, and with chemo side effects, like the Milk Thistle.
The PHPlus is not available in the UK, only from the USA,via Amazon, but then we found it a bit cheaper on E-bay. The idea of it is that Cancer cells like and need an acid environment to survive and thrive, so by throwing alkaline substances at it, it makes it harder for it to live. Same reason as the alkalising water jug.
The bottom line is, they are not going to harm me, won't interfere with conventional treatment, so they can't do any harm.
Monday 29th September 2014.
Back from the Walsgrave, and my ChemoRadiotherapy starts on the 21st October, and runs for 5 weeks, so should finish around the 21st November. Worst part of today was a drink I had to take, to help the CT scan show up better. It tastes like Aniseed, she said. Great said I, I love Aniseed. It did, a bit. A bit like a glass of water thats had a couple of aniseed balls sat in it for half an hour. And after the first cup full, it was sickly. I had a litre of it to drink. 4 cups in, jug looks like theres another 4 to go, and I really thought I'd end up throwing up before I drank it all. Finally managed to get it down, even more surprising was keeping it down! Took hours afterwards to get rid of the taste. But CT scan done, I have little 'tattoo' dots, one on each hip and one at the base of my back, to line up the radiotherapy with. Very tiny dots, not sure if they eventually disappear or not, didn't think to ask. Possibly not. To be honest, they are so small you wouldn't notice them unless you knew they were there. My sick note runs out on the 27th October, so all being well I will return to work on the 28th, although I will only be doing half shifts at first, to see how tired I get. Radiotherapy is tiring, so I'm told, plus there's a 45 minute journey each way to the hospital and back. But at least by going home at 2.00am I can get some extra sleep.
Friday 26th September 2014
Just a quick update here, I just had a phone call from The Arden Centre at the Walsgrave Hospital, where the Radiotherapy will be done, and I have an appointment for my Planning Session on Monday afternoon, 29th Sept.
Wednesday 24th September 2014
Well I had my appointment this afternoon with my Oncologist, so we have a plan. Next week I will get an appointment for what they call the planning session, where they decide exactly where they will be aiming the radiotherapy, and make small tattoo marks on your skin so they can line it up exactly to the right spot every time. Then the radiotherapy will start 2-3 weeks after that and run for 5 weeks, which is a little less than I was first told. Also, another good thing is that my chemo will be in tablet form, which means no long hospital time on a drip. So just having done a rough work out on the calendar, hopefully the radiotherapy will be finished in the 2nd or 3rd week of November, which will still leave us time to get a short holiday in before Christmas. Would really like to be able to do that, as I think we will both appreciate a stress free break by then, and will make up for having to cancel the holiday we had booked for next week. So now we wont really know much until I get started- then it will be a case of seeing how it affects me- the list of possible side effects is quite long! Not really scary, just long. Sickness/diarrhoea/sore mouth/throat/hands and feet/ skin in radiotherapy area/infections from low white cell count/tiredness from low red cell count!
I told you earlier about the folder you get to document your care etc:
I've added a couple of modifications to it- added a pen holder, and a notebook with a chain. I also stuck some business card holder pockets to the back cover.
A page that lists everyone in the Multi Disciplinary team looking after you.
Pages to list all your appointments. All in all, a brilliant idea. Its so hard to remember everything, and who everyone is, here you have it all to hand any time you forget something.
Friday 19th September 2014
This little post is just really one to extol the virtues of the NHS, which often comes under fire for doing things badly. Speaking from my own experience so far, I can't praise it highly enough, nor the people working in it.The programme for delivering Cancer Care has been massively overhauled in recent years, and from what I am seeing, it works incredibly well.Everything moves very quickly, with appointment delays at a minimum. I've waited longer in the past for an appointment with my GP than I have for the consultant ones. You are now given a folder which contains all the details of the Consultant team, the Multi Disciplinary Team, that are caring for you. It also has all the information you are likely to need, contact numbers for anyone you may need to speak to, details of your treatment plan, places for you to record appointments, questions you may want to ask and so on. In my pre-op assessment visit, I met the Nurse who would be in charge of my care for my surgery, Julie, and the Stoma Nurse who would also look after me, Donna. I have already met my Consultant surgeon, Mr Patel, his clinic nurse, Sandra, and the local hospital Stoma Nurse, Jayne. I have phone numbers to contact any of them, for any help I may need or questions I want to ask. In the couple of weeks before my surgery, I had phone calls off Sandra to make sure I was ok, and to ask if I had any problems. She organised letters for me to cancel the holiday we had booked for next week, letters for work, etc.
As you will have read further down, I was very, very worried about this surgery, and Julie did all she could to make things easier for me to cope with.
I was discharged on Monday 14th, and on Tuesday afternoon I had a phone call from Julie to make sure I was ok.Jayne also phoned me Tuesday afternoon, and said she would call me again later in the week. On Thursday I had a call from Jayne, and Sandra, again making sure I was ok, asking if there was anything I needed, or wanted to ask about. Today, Friday, I have had a home visit from the Community Stoma nurse to organise supplies and provide me with her contact number in case I have any problems or questions. She will also come back and see me either on a regular monthly basis, or whenever I might want to see her. I have just had another phone call from Julie, again making sure I am ok and don't have any problems. She will phone me again on Tuesday next week, and I can call her anytime too. So what I am really saying here, is don't for one minute think that you will be discharged from hospital and left to fend for yourself- they will keep checking in with you. and you can contact them any time you feel you need to. This is why I say the way you are treated is vastly different to the kind of care I can remember receiving 30-40 years ago. Nurses have always been wonderful, but other medical staff not so much, and below you will read how well I feel I've been treated by consultants. No-one at all has attempted to make light of my fears and worries, nor to dismiss them as would have been done in the past. Each and every one has listened to me, and taken what I said seriously, then explained things clearly, with the reasons why its the best/only course of action, and then done everything possible to make it as easy to cope with for me as humanly possible.That I think is the biggest difference, that they will listen to you, then work with you to do what they can, rather than the old 'my way or the highway' method.
Thursday 18th September 2014
This post is not really a medical update, but I thought I'd share my thought processes here for anyone who's found this page because they've either had a Bowel/Rectal cancer diagnosis, or have to have a colostomy.One small update, I noticed yesterday a little sign of some infection of the wound site, so got a Docs appointment straight away, and she gave me anti-biotics and some anti biotic cream to apply. I've done so well so far, I didn't want to set myself back waiting to see if it cleared on its own. Feels like they are working, as its less sore today.
Anyway, the thoughts. The funny thing is, I'm not stressed at all about the Cancer diagnosis. Thats beaten, no question about it.100% certain of that. My biggest mountain to climb was the colostomy surgery I've just had. Before we saw the Consultant, I had a horrible thought in the back of my mind that this may be needed, and I was horrified and terrified by it. You really have no idea how much. All that was in my head was how it would look- don't forget I'm a Leo, Vain is my middle name! I was convinced I would be sickened by the sight of it, that knowing that that thing was there would totally consume my every waking thought. I was literally climbing the walls with the stress of having to have this done. I didn't want it, wasn't accepting that it would be there, I was absolutely certain I would not be 'me' anymore. Without a doubt, I was in the worst place I'd ever been in my life.
The Stoma nurse I had seen, Jane, had given me practice packs, for a Colostomy and Illeostomy, which contain a rubber stick-on 'stoma', and bags, so you can get some idea of dealing with it beforehand.
Well, I'd put it off, and off, along with packing my case for Hospital, until the Sunday night before my pre-op assessment. So we went upstairs and packed , then I went into the bathroom to get the practice kit out, while Hubby went downstairs to fetch something. I took the bags out of the pack, and that did it for me. I sat on the side of the bath and started crying. Hubby came rushing back upstairs, and I sat and sobbed my heart out for ages.I so did not want to have this done, I just wanted to run for the hills. I really could not do it, could not let them do this to me.I also knew that I could not go into hospital on the Tuesday night, and be alone all night beforehand, as my surgery was scheduled for Wednesday morning. I needed Doug with me, he's my rock, there for me every step of the way.
I'd been taking KALMS for the last week or so, and for anyone who wonders if they are any good, let me tell you they are fantastic. They had totally kept me on an even keel since I got the surgery date. Eventually I got it out of my system, and we went to bed. Next morning, talking to my DIL on the phone, she's a nurse, she said ask for some low dose Diazepam to help you over the next two days, and ask about being admitted on the Wednesday morning instead. There is more in the post below, they sort of run together, really, but the whole thing was so long, I felt it needed breaking up a bit.
Wednesday 16th September 2014
I thought I would go through the whole surgery process here, so you have an idea of what to expect and when.
I think one of the best bits of advice I can give anyone facing this sort of thing is: TELL THE TRUTH.
When you are asked how you are feeling, don't just answer' I'm ok/fine, or I'll be ok'. Tell them exactly how you are feeling, they can't help you if you don't. And from my experience, if you need help, they will move mountains for you. Being that open is not an easy thing to do, I know. I am not usually a sharing person like that, and will always put on a tough front rather than admit to what I see in me as weakness. But this time, I took a deep breath, and said that I was scared/terrified/ upset/ frightened. That I didn't want this op- I knew I had to have it, but I didn't want it- and that I could not be on my own the night before having it done. I needed Doug with me, to support me, just to be there for me. The nurse I was talking to, Julie, said, 'well, what about you come in Tuesday evening for a pre-op jab, we let you go home and come back in Wednesday at 7.ooam?'
That was exactly what I needed, and could not believe how simple it was to solve the problem, just by speaking up. They did also give me two Diazepam tablets, one to take Monday, one on Tuesday. They worked extremely well, I was not at all worried/stressed all day Tuesday, I slept really well both nights, even when I got up Wednesday morning to go in I was fine. No upset all the way to the hospital, nor when I went in. In the car on the way in, I said I needed to get my head in the right place for dealing with this, and Doug said that I had to look at it that I NEEDED this colostomy, that it was going to be my friend. It would allow me to have the Chemo/Radiotherapy to kill the cancer, and that I am sure is why I have handled the whole stoma and bag thing so much better than I expected to.And I do now fully understand my Consultant's reasoning, as the lady in the bed next to me also had a colostomy, hers an emergency one, to resolve a blockage caused by Radiotherapy. Exactly what mine told me was a high risk. So,I've decided its Sid ( the stoma), and Percy pouch. Me and Sid are getting to know each other quite well now, but he does like to have the last word! I was actually thinking of Sid the Sloth from Ice Age, as I'd got such anti- colostomy feelings, I needed to give him a friendly face, so to speak. I only thought about Sid Vicious, and Sid Snot( for all those who remember the great Kenny Everett) afterwards, lol.
I did get very slightly stressed when I found out I was second down to theatre, as Tuesday night I had been first on the list, so knew I would not have to wait and worry. The Surgeon visited, and explained the op so I could sign the consent form. He couldn't tell me whether I was getting a Colostomy or Ileostomy, as it would depend where he could find the best loop of bowel to work with, but he would try and take it as high as possible so that it should not be necessary to swap it when I have the Bowel resection surgery. Then I had a visit from the anaesthetist,who said that as it was Laparoscopy( keyhole) surgery, he didn't think that an Epidural was needed, just a spinal block. I'd been told they do an Epidural so that pain can be managed better, and was terrified of that too. The idea of someone coming near my spine with a needle freaks me out. I'd also been told they could do that whilst I was under the general anaesthetic, but he said they like to do the Spinal block while you are awake. I told him how much I was freaked by that,and he asked me to trust him, that they would put a canula in my hand, give me some Valium into it, and I would not know a thing about it, I'd be away with the fairies.So I said OK, as long as I don't know about it, I'll cope.
I started to get a little wound up, but lay down on the bed, holding Dougs hand. The Diazepam was clearly still working, as I obviously went off to sleep (I remember looking at the clock at 10 to 9), and next thing I was being woken up at 11.00 to go down to theatre. Doug could walk down to the Theatre suite doors with me, so we set off. It was awful having to leave him at the doors, and he said after that was the hardest thing he's had to do, walk away and leave me.The nurse with me said 'don't worry, we don't expect you to walk back', lol. I got taken into the side room they do the anaesthetic bit in, and now I was getting a little panicky. The anaesthetist I'd seen earlier was there, filling up what looked like enormous syringes with stuff. A second anaesthetist came in, and got me to sit sideways on the bed, hugging a pillow, with my feet on a stool. Now I am starting to really be afraid of whats coming next. This guy was wonderful too, he put the canula in my hand, then said' I'm going to give you something to relax you now, and you'll feel like you've had a few drinks. Just remember, its your round next, and don't give me the excuse that you've left your purse on the ward, because you all say that!''
Next thing I know, my vision has gone weird, seeing double(or more). You know that feeling when you realise you should have stopped at least two drinks ago? That one. And that is absolutely the last thing I remember before waking up in the recovery room. I heard the person sitting with me phone up to the ward to say I was awake and could go back. Then I must have dozed off again, as I don't remember being wheeled back up, I just remember being wheeled back into my room, and seeing Doug sat waiting for me. I shook off the anaesthetic really quickly, and was sat/lay talking to Doug within minutes. Then trying to wiggle my toes/ move my legs and nothing happened because of the spinal block. I kept trying them every so often, and got quite excited when I started to get movement back.Then the itchy nose started. That quite drove me mad all afternoon- apparently its the effects of the morphine wearing off. But the Spinal block I was given earlier was the only pain relief I needed, by the time that was wearing off, I didn't need anything other than paracetamol. My tummy just felt sore, and bruised, as you'd expect.You need to do as much deep breathing as possible to help remove the anaesthetic gases from your system, and because they inflate your abdomen with air to be able to see what they are doing, you get slightly painful spasms as that clears. It sort of goes up your torso, even up to your shoulders, then passes. This photo was taken on Saturday 13th, as they let me go home for the weekend.
Feeling fine, and as you can see, no visible signs of a colostomy bag. And, now a week after the surgery, the wind issue has settled down too. Sid is nowhere near as vocal as he has been.Thats another thing- remember you are having your bowel de-functioned, not your sense of humour! You will need it, as for the first few days, wind is definitely going to happen, no warning, and no ability to stop it. It's stopped a number of conversations in the last few days, all you can do is laugh about it. And a lot of your conversations will involve poo. More than you've ever done in your whole life, you will talk about poo. To your partner/nurses/doctors.You'll deal with it. Honestly.
Since I've been discharged properly on Monday morning, I had a phone call from the Nurse (Julie) on Tuesday to check I was ok, She was looking after me in hospital,and organised me going in Wednesday instead of Tuesday, and an hour ago I had a phone call from the Stoma nurse at the Alex, Jane, to see how I was. So you won't get sent out of hospital and left to fend for yourself. They will check on you, and they are all just a phone call away if you need anything.
Just remember, the only stupid question is the one you don't ask!
When you do get home, start keeping a food diary. The advice is small, regular meals, and its very good advice as you get used to how long things take to process through your system. The more you can keep your meals in the same timeframe, the more you will come to know when things are going to happen, and when all is quiet. Also, the food diary helps you to see what, if anything, your system is not happy with. There are some things to avoid- sweetcorn, as it can cause blockages, for one. The booklets you get with your colostomy pack give you a lot of advice on this. Not everyone reacts to foods in the same way, and what suits me may not suit you, and vice versa. You will also get a good idea of what you are ok to eat from the hospital meals.Mainly I have been ok, Pasta in sauce packets seem fine, as does soup. I had a bag of chicken and mushroom flavoured rice that did not seem to agree with me at all a couple of days ago, but by keeping the food diary you will be able to identify what does or doesn't work for you. Just remember about which foods usually cause gas problems! And your meal sizes will be smaller- I find I can just about manage half what I was eating before.
Sunday 14th September 2014
Righty-o then, update time. I had my surgery on Wednesday morning, and as far as I know at the moment, all went well. I'm at home a bit sooner than I expected to be honest, I'm not due to be discharged till tomorrow morning. A consultant came round Friday morning, and said that as long as I went back today to have a jab, and then again Monday morning to have a plastic bridge in the stoma removed, she didn't see why I needed to stay in over the weekend. So a quick phone call to Beloved Hubby, and I was on my way home. So nice to be at home, and sleep in my own bed, snuggled up to Hubby. Despite what I had been warned I would feel like, I actually feel fine. I was out of bed on Wednesday evening, and Thursday I was up and dressed and walking around the ward and corridors.I've been told by nurses that I have no right to be as well as I am! I went down to theatre at 11.00, there was a change in the theatre list, and I ended up second instead of first. Back on the ward by 1.15, and this pic was taken around 4.00. As you can see, sitting up and feeling perfectly ok. And yes, I have had a cup of coffee already! The most annoying thing was that my nose was itching all evening! Apparently, that's the effects of the morphine they give you wearing off. Really weird.The surgeon did a colostomy in the end, I didn't know which I was getting until I came back up- he said it would all depend on where was the best place he found a loop of bowel, but that he would try to make it high up enough that there would be no need to swap it to an Ileostomy later, so I'm hoping that's what's happened. The walk down to theatre was not too bad, as Doug was allowed to walk down with me, in fact the worst bit about it was that you walk along the 2nd floor corridor, which is a sort of atrium which overlooks the First floor, and down there is a Costas coffee shop! I hadn't had a drink since 6.00am, and the smell of the Costas coffee was overwhelming, lol. The other upside was that I didn't have to have the enema either Monday night or Tuesday morning- the surgeon said he was fine without it being done, which was great. At the moment the stoma has what they call a bridge in it, holding the loop proud of the abdomen. Its looks like two 'T' shapes joined together, made from plastic. That comes out (apparently they just snap one end off, and pull it out) tomorrow morning, then I'm officially discharged. All I have right now is a little soreness and bruising, and a few holes superglued closed. I have it all straight in my head now, I'm not as
So far I have nothing but praise for all the medical staff I've come into contact with, every single one has been lovely to deal with. Every one has done everything possible to inform, reassure and help me cope with this, and I can't fault the NHS treatment I've had so far.
This was Thursday afternoon, having my long awaited Costas Mocha.
Monday 8th September 2014
Just a quick update, been for my pre-op assessment this afternoon, and have managed to get them to allow me to go in on Wednesday morning, the day of my op. I was really distressed by the idea of being alone in hospital on Tuesday night before the surgery- I need my Beloved Hubbys support to get me through this. The nurse was very understanding, and could see how upset I was by this, so she said ' how about if you come in Tuesday evening (I need to have an enema and an injection to help prevent blood clotting), then go back home and come in early Wednesday morning?' You have no idea how much stress that released in a few seconds, honestly. So much so, my blood pressure, which had been scarily high, dropped like a stone to normal within half an hour! They've also given me a low dose Diazepam tablet for two nights, to help keep me calm. So thats the plan, and I can cope with that. I also had an appointment a few days ago to see Dr Sothi, the Oncologist come through. Its for the same day I'm having this surgery, so I had to phone and let them know why I couldn't attend, they are sending me a new appointment for two weeks time to see her.Then we will get a plan and timeline for the Radio-chemotherapy.
My head is in a much better place right now- I know I need this surgery so they can blast this cancer with the radiochemo, so the sooner its done the sooner we can start.
Wednesday 4th September 2014
This week, on Tuesday, I had an appointment with the Stoma nurse who will be looking after me. Gave us lots of information, a really nice lady, she will be looking after me in the hospital too.She decided on the position for the Stoma, these days they try to position it to suit the type of clothes you normally wear, rather than you having to buy clothing to suit the Stoma pouch. The fact that I generally wear leggings and long tops is a plus, it's highly suitable clothing for the positioning. On the downside, apparently I'm going to come out of hospital feeling like I'm about 350! She said anything that messes about with the bowel really makes you feel lousy, and that its a six week recuperation afterwards, during which I cannot work, and can't lift anything heavier than a kettle! I did ask if the kettle can have water in it, as otherwise me and my caffeine habit may have a problem. Also, many people continue to work through their chemoradiotherapy- it affects everyone differently. So having spoken to my Manager, I shall be trying out working a half shift for the first couple of weeks, and see how that goes. Maybe stick with that, or maybe try going to two full and two half shifts after that. I'm not going to push myself to do stuff I'm not up to, but if I'm ok, then I will work on.
Today I got my admission date, I will be going in on Tuesday 8th at 4.00pm.Just spoken to the clinic nurse, and Mr Patel isn't the one doing this surgery, its one of his colleagues, a Mr Zilvetti, who she said is also a lovely man. Mr Patel doesn't have a surgery listing this week, and he wants to get this done so I can start the chemoradiotherapy. I have an appointment Monday afternoon for my pre op assessment, and I will get more info then, but it seems like my op will be Wednesday morning- so I'll probably be in theatre when most of you are WOYWWing!
Also, I will get an appointment soon to see the Oncologist, Dr Sothi,to find out exactly what this entails, it may be just mainly Radiotherapy, with a short course of chemo.
Friday 29th August 2914
Okay, so here it is. Yesterday we saw the Consultant and my actual diagnosis is ADENOCARCINAOMA OF THE RECTUM. The picture to the right is the one given to us by my Consultant Surgeon, and the black circle shows exactly where my cancer is.The crosshatched area shows the section they will eventually be removing.
And so we come to the facts, which I have to be truthful were a little more overwhelming than we thought, or were hoping. It is large, and aggressive.
For starters, it is not just a lump, as we were thinking. So the quick 'one surgery' fix I was hoping for is not happening.Apparently it has grown in a complete band around the rectum, and they are, I think, puzzled that I have had no symptoms apart from the original one. It seems that when they grow like this, it causes problems in going to the toilet, as it blocks off the area, but thats not happening here, and I've had no weight loss, nor any pain from the area.
So for the gameplan.
Due to its size, its too big to remove at the moment, so I have to have 6 1/2 weeks of chemo/radiotherapy to shrink it. 5 days a week, with a break at weekends.That will be at the Walsgrave, Coventry, as that is the hospital that does radiotherapy, not all do. It is also the big centre of excellence for cancer treatment, which is good.
My Consultant is a Mr Patel, and I felt I liked him as soon as we walked in. He seemed like a human being, not someone who considered himself as one step from a god, and as a mere mortal, I should be grateful he was condescending to see me, and not have the temerity to ask questions!
Just to step backwards a moment, when we went in to see the Consultant surgeon, and the clinic nurse with him, I wasn't sure what to expect. In the past, for one reason or another, I've had dealings with Consultants, and have always found them to be rude, arrogant and patronising. Generally I've taken a dislike to them on sight, and had always felt that my questions were brushed aside, and any fears etc were dismissed. A case of 'its my way or no way' attitude, and explanations not given, or grudgingly they would curtly reply that that is how they do things.
He said the problem that radiotherapy can create is to shrink the muscles in the area being treated, so what the usual method is, is to attach a Stoma bag to the outside of the abdomen, on my left hand side, to take waste away. My first response was why? and to tell them that the whole idea horrifies and terrifies me. Hubby can vouch for the fact I had a complete meltdown over this on Monday, as the idea that this may be done was already at the back of my mind.
He did not dismiss how I felt, but rather asked me to hear him out while he explained why it was the best route to take. If the muscles do start to shrink,then a blockage can occur, which would mean emergency surgery, with no guarantees about how much may need to be removed, and the bag could end up as permanent unnecessarily.
He also explained that when the surgery to remove the cancer was done, an Ileostomy bag was fitted, this time on the right hand side of the abdomen. This is because the area where my join will be can very easily start to leak, so to give it the maximum protection for healing, they divert everything well before it gets to that area. Basically it does nothing for 6-12 weeks.
He has said that what he would like to do, is to just fit an Ileostomy bag at the start, so that I would not have to have the first bag removed and a second fitted. The difference between them is a Stoma bag collects more solid waste due to where it is attached to the bowel, the Ileostomy waste is much more liquid.
Having it explained clearly like that, I can see why its a necessary part of the whole procedure, so I have to deal with it.
So, the plan is that in a couple of weeks, he will do the surgery to fit the bag. I get a 2 or 3 week recuperation period, then the radio/chemotherapy starts.
After the 6 weeks of that, they wait another 6 weeks, as the radiotherapy continues to work for that long afterwards. Then they will scan again, to see how much it has shrunk, so they can do the surgery to remove it. It seems like that will be maybe December/January. Then 6-12 weeks after that, I have a third surgery to remove the Ileostomy bag, all being well.
When you see the Clinic nurse, you get a folder now with loads of info in, all your points of contact, who is involved, etc. It seems long gone are the old days of fighting for every scrap of information.
I don't know if I've already mentioned that now your case is looked after by what they call a Multi- Disciplinary Team- made up of Consultants in various fields, Surgeons/Oncologists/Gastroenterologists/Imaging Specialists/Radiologist/Histopathologist/Clinical Nurses. As soon as someone is diagnosed, your case is assessed by this team, in a meeting they hold weekly. And after this, your case is reviewed at every weekly meeting, by the whole team. So you have the opinions of, in my case, 14 Consultants, making a plan for you, personally. Its no longer a case of 'one size fits all' treatment, it is individually tailored to you and your case.And because you have so much input you know you are getting the best treatment for you, rather than the old way of having to accept how one Consultant worked, like it or lump it.
I also had a light bulb moment last night- I need to reverse my thinking about having a bag fitted. If I keep the idea in my head that this is an awful thing,it will define and influence how I cope with it. I have to start viewing it as my friend, not my enemy. Especially as it seems its going to be around for maybe 6 months or so! Maybe I should give it a name- all suggestions will be considered, so get your thinking caps on :)
Quick add on here, just had a phone call from the Stoma nurse who will be advising me, I get to see her on Tuesday afternoon. I must say I'm pleased how fast everything is moving, I think the only reason he's not doing my surgery next week is because he has some holiday time, so I'm pretty sure its going to be the week after.
We are still being very proactive here, Hubby just bought a water filter jug that turns your tap water Alkaline, as the Barleygrass powder was not agreeing with me.
We also showed Mr Patel the list of things I'm taking, and he was perfectly happy with them. The Nurse also said to show it to the Oncologist, as they have a list of helpful supplements/alternative therapies that help, and there may be some we don't know about. I can remember when this sort of thing would have been frowned upon, or completely dismissed.
Just coming back with something I forgot, and I can't believe I did!
This may sound crazy to a lot of people, given the diagnosis, but one of the things that has really been stressing me is losing my hair to chemo. It has taken me 20 ish years to get it to this length, after all. Anyway, the great news is that there is rarely any hair loss with the chemo I will be having, so thats one ray of sunshine to come out yesterday.
Wednesday 27th August 2014
Got up to a missed call on my phone. A voicemail message from the hospital. I have an appointment for tomorrow, 28th, to see the surgeon for the results, and gameplan. Really pleased its this quick, the stress of waiting to find out has been the worst part so far. Short notice, as he usually does his clinics at the Alex on Mondays, and obviously lost a clinic this week due to the Bank Holiday, so he's fitting people in before his normal clinic at the Princess of Wales in Bromsgrove- only about 20 minutes away from us. Thats the good thing with working nights- the short notice isn't a problem, and it gives me less time to stress!
Saturday 9th August 2014
Up at about 6.30, as my appointment was for 8.00am. Oddly enough, I was really calm, not at all bothered by what was coming. I actually thought that maybe there had been a sedative of some sort in the mix I'd been drinking. I did ask, and there wasn't- still don't know how I was so calm, after the way I'd been when I came out of the hospital the day before. From what the nurse had said, it seemed the most likely cause was polyps, and I was very worried about the removal of these, particularly as the consent form said that in the case of them puncturing the bowel, emergency surgery would be required!The Doctor that admitted me, explained to us that that was actually very rare, she had only known of two cases in the 12 years that she had been there, which put it in perspective a little. Still not a happy bunny though.Then I was taken through to another area, and Doug was told to go home, and they would phone him when I was OK to be fetched. She also told us that when he came to collect me, the Doc would have a meeting with us, and explain what they had done.Had to undress and put a hospital gown on, and the nurse put a cannula in the back of my hand, for the sedative. This was a problem, as the laxative emptying your system dehydrates you, so your veins shrink. Took her a couple of attempts to get it in the back of my hand, and I had the most spectacular lump and bruising from it. Doesn't help that I bruise really easily either.Not happy, but surprisingly, still quite calm. I get wheeled into the room where the procedure will be done, and the Doc gives me the sedative. I have to be totally truthful now, and say that it wasn't as traumatic as I expected, and I honestly didn't feel anything. All in all, it took about 15 minutes from start to finish, and I'm wheeled back out to the main area. Another couple of ladies were there as well now, waiting their turn. I was glad that mine had been at 8.00, which was why I grabbed that appointment- get it over, without sitting/lying there waiting. The nurse offered me tea or coffee, and biscuits.Two cups of coffee and two little packs of Bourbon biscuits later, and the nurse was obviously satisfied that I was ok, as she phoned my Beloved Hubby to come and get me after half an hour.Well, I really didn't feel sedated, to be honest. I felt perfectly aware,and perfectly steady on my feet. While I was drinking my coffee, I was sat on my bed opposite the desk, and could see the bottles that had been brought out with me, from whatever samples they had taken. At this point I began to get suspicious about what they had found, because as far as I could see, there wasn't anything in them. I was sure that if they'd removed polyps, they would be visible in the sample jars. So I was fairly certain all they'd done was take scrapings to analyse, and I knew that wasn't the best scenario.
When Doug arrived, the nurse brought him through to where I was, and after about 15 minutes, we get taken across to an office, and the Nurse stays, and the Doc comes in. Now you can tell instantly from expressions, and their manner, that its not right. He explains that they have found a growth, and have taken samples for the lab. I know they don't actually come out and say Cancer, but you know they have seen enough of this to know what they are looking at. The Nurse even says,' I'm so sorry'- that really gave the game away! He says they will send me appointments for a CT scan, and an MRI Scan, and again, the fact is they do those to determine size and spread, not for diagnosis. So they are clearly of the Cancer opinion. He tells me they will send me an appointment to see them when they have all the results, probably 2-3 weeks.
I leave the hospital far calmer than I ought to be, honestly. I had actually had this scenario at the back of my mind all along, so it wasn't a total bolt from the blue. But still.
Friday 8th August 2014
The pre procedure meeting with the nurse. Its basically a questionnaire about your general health, and they explain the procedure to you, and give you the laxative drink you have to take the night before, to completely empty your system. Having the procedure explained at the time freaked me out, I have to admit- she told me they give you a sedative, then they inflate the bowel with air to make it easier to see whats there. They would also remove any polyps (the most likely answer to what had caused the problem), and take any biopsys they wanted at the same time.She explained the laxative consisted of two packs of two part powder, each to be taken over two hours. Tasted like crap, to be honest. Not a nasty taste, just far too sweet for my liking. I found with the second batch, I drank a mouthful of Bitter Lemon after each mouthful of the solution, and I got it all down.She also double checked that I hadn't eaten anything after 9.00, which I hadn't. Had some breakfast, (MacDonalds Sausage and Egg McMuffins, since you ask, at 7.00am). The fact that I work nights made this bit easier. I could have fruit/herbal teas, black coffee/ squash, pop etc. No milk allowed as it contains fibre.Also not allowed to have anything Red to drink,as it colours the bowel lining.She also said I would be there for three to four hours, before I could go home, to allow the sedative to start to wear off, that I could not go to work for 24 hours after, and that I wasn't to be left alone for 12 hours. Left the hospital telling Doug I wasn't going in to have it done- totally unnerved me. I tend to have to have a meltdown, to get past these things.
Monday 30th of June, 2014.
So, to start the counter, it all began when I went to the toilet, and passed blood- quite a lot of it. Enough to scare the living daylights out of me, and make me phone my GP for an appointment. Given that my GP wouldn't know me if she fell over me,( I've been registered there for 16 years, and can count on the fingers of one hand how many times I've actually been there), that indicates how much it scared me.
She examined me, and said she was sending me down to A&E to see the surgical ColoRectal team, and that I should pack a bag in case they kept me in.
Panic mode set in here, I am totally phobic about hospitals.Half of me knew I had to go, the other half was telling me I'd over-reacted, it wasn't worth worrying over.
In the end, I spent a few hours in A&E, every so often they would check my blood pressure, and it was getting higher each time, I'd been waiting to see someone for hours, I was getting more and more stressed- Beloved Hubby was a total rock for me, trying to keep me calm during my occasional melt-downs, and just being there for me.I finally saw a young doctor, and the senior consultant, or surgeon, one or the other. His decision was that I could go home, (good job, as I'd already decided there was no way I was staying, and was dressed ready to go), but he wanted me to have a colonoscopy to see what was wrong. They told me I should get an appointment in 5-6 weeks, if I hadn't had one by then, to phone up.
Two days later, I had a phone call from the hospital,asking me to phone up for an appointment, which I missed. Found the missed call on my phone that night after I got to work, and promptly had a complete panic. Monday, they are telling me that it will be 5-6 weeks, Wednesday, I've got to phone for an appointment. Scared the life out of me, I assumed they had found out something, and it was more urgent than assumed. Turned out that the appointment would be in 5-6 weeks, they just wanted me to phone to make it! So, I get my appointment, and its for the 13th of August. Great. The day before my birthday. I also had an appointment for a 'pre-procedure' meeting with a nurse from the team, on the Friday beforehand.Anyway, the whole problem got shunted to the back of mind, until it got closer. Thats how I deal with bad things- shut them away in a box, and put the mental box into a mental cupboard, shut and lock the door.
During the week before the appointment, on the Wednesday, I get a phone call from the Hospital, to say the Doc who was going to do the colonoscopy was not available that week, and offering me an alternate appointment on Saturday, the 9th of August, at 8.00am. I grabbed that, to get it over with, and as it was in only two days time I didn't have too much time to stress.She also told me that I wasn't to eat anything after 9.00 am on Friday morning.
The Research Game:
So, we get home, and Google really becomes our friend. Doug is researching everything he can find about Bowel Cancer, as well as alternative therapies- we figure that used alongside whatever conventional treatments will come into play, it can only all help.
We find out that for starters, Cancer cells feed on Glucose, so anything with glucose in it is off the eating and drinking list. It's why they give chemo patients a glucose drip at the start of treatment- the cancer cells start feeding, and are still feeding when the chemo goes into your system.
We also find out that Cancer cells need an acidic environment to live and thrive,and that they produce acids as a by product, to make their living conditions comfortable. It is possible to turn your body more alkaline, using herbal products, so they are first on the order list. After all, making it as hard as possible for them to survive, can only be a good thing.
One thing you do have to realise is that there are no clinical trials of herbs in this field, only ones done by scientists/doctors in Universities etc. From the Drug companies point of view, there is no profit to be made in these, so they will not invest in them. It does mean you need to be prepared to do a lot of reading and research, comparing what you find from various sources. Remember, there are a lot of Snake oil salesmen out there, prepared to quite happily get rich off other peoples misery- there is NO MAGIC BULLET, no matter who will try to tell you otherwise. Read, read and read again, then check and double check. Some herbs work better for some Cancers than others, some will actively feed some types of cancer cell- so don't skimp the research!
Useful links so far:
Cancer Research UK
Web MD Vitamins and supplements: most of those we bought are listed here.
The starter one is BARLEYGRASS POWDER, and I've linked to the Organic version we bought in the name. Not only does this help neutralise your system, it has shown in scientific trials to have the ability to kill, and help the body combat, Cancer cells. It can cause nausea, diarrhoea or constipation, so start the dosage very small, and increase it gradually. It is a detox herb, so take it gently. Tastes a bit icky, I will admit, so add some fruit juice to it, or blend it into a fruit/ veg smoothy- I add some lime juice to mine.
THE EVIDENCE - There have been no clinical trials of barley grass. In an experiment at George Washington University, Goldstein and his colleagues exposed leukemic cancer cells to dehydrated barley grass extract. The extract killed virtually all of them. Encouraged, the researchers then subjected brain cancer cells to the extract. It eradicated 30 to 50 percent of these cells. In a third trial, the extract inhibited the growth of three types of prostate cancer cells by 90 to 100 percent.
We also got a pack of test strips, to test urine, so we could see whether it was doing anything. We also tested out tap water, filtered water and bottled water for acidity, and surprisingly, found our tap water was the least acidic. Obviously, yours may well be different, and different bottled waters would be higher or lower on the scale. And it is working. My system is becoming more alkaline, but it was causing diarrhoea, so I followed the instructions, dropped it for a few days, then started out more slowly. I think partly we threw too much new stuff at my system in one go. He has also ordered some Ph balancing tablets, as these may be easier to take than the powdered version, especially if we are out all day.
So, here is the full list of what was ordered, or bought locally. Many items will be available in your local Health Food store.
Sunshine Vitamin D ( Seven Seas Brand)
Immune Defence - fish oil and Vitamin C ( Seven Seas)
B-Complex- +Vitamin C
Milk Thistle 8580mg
Curcumin X4000 ( contains Meriva)
Perfectly Healthy Ph Plus.
Curcumin- this one is apparently a highly effective anti cancer supplement, as it is the major ingredient in curry powders, and the people who have a high intake of this, also have the lowest rate of digestive system cancers. Too much info to quote here, but this link will take you to a detailed assessment of it.
The Quercetin plus- that as yet I am not taking, Although it is supposed to be very helpful, one of its contra indications is that it can cause bleeding to be severe, so should not be taken for at least two weeks before any surgery. As we yet don't know what the timeline is, thats on hold.
The Apricot Kernals- now thats a strange one. I came across those in a forum post by a guy who had been taken off Chemo,as it was ruining his quality of life. Here is the link to his story, make of it what you will. Again, working on the theory that these things are not poisonous, it can't do any harm.
Milk Thistle went on the list as its shown to help alleviate some of the side effects of Chemo-I may not need it if I am lucky, but its a just in case.
Some of the basics on there, the Vitamin B, C, Immune defence etc, all aim to generally improve your health, and fight the 'free radicals' or 'oxidants'. The knowledge is that free radicals can cause the sort of cell damage that cancer cells exploit, so destroying the higher levels of free radicals again can only help.