hmmmm, where to begin after so long? I’ve not talked much about the whole cancer thing in a while so this will be a round up of what’s gone on and where I am. Just for the record I had been referring to my cancer as bowel cancer, I actually had rectal cancer which is just a matter of a few inches lower, but I thought I’d set that straight. Also, something I hadn’t picked up from the letters due to chemo fog was that I was classified as Stage 3. I’m glad I didn’t pick that up as it would have freaked me out before I had a clear enough brain to logically think it through. Stage 3 basically means that the cancer has begun to spread. My tumour was very small, I only had a few inches of lower bowel/rectum removed to ensure clear margins and within what they removed there were 13 lymph nodes, which really isn’t a lot. One of those lymph nodes, the one closest to the tumour, had cancerous cells in it, it was doing its job! So, even though it was Stage 3 it was a very very early 3, the classification of stages doesn’t allow for how far into each stage you are. There is another classification system that says how large the tumour was, it’s stage (i.e. how far it’s grown) and whether the cancerous cells have spread at all but I don’t know my numbers for that one and it’s not used as regularly outside a clinical setting as the stages. So, onwards.
I had a CT scan done in October, I think. It was my 1 year on from diagnosis scan, so actually a little early but it needed to be done before having the stoma reversal. The scan came back clear. I have to admit that it didn’t really hit me what that meant, when I had it done last time it was to see if the cancer had spread so my brain just understood this one to mean the same thing. What it actually meant was that the cancer is gone (for now, it’s all one step at a time forever with this), and it wasn’t until my surgeon called me with the results because she didn’t want me to wait for them that I realised that it was kind of an important test!
I’d been hoping to have the stoma reversal done at the end of October, but my surgeon is really busy and sadly had a lot of new cancer patients to see, so it was delayed until November 8th (I think, can’t remember the date now!). I could have had a different surgeon do it, but I figured if she took it apart she could put it back together. Of course the stoma gave me one last run for its money and had a leaky phase right at the end when I was playing chicken with a box of stoma bags not wanting to order more that would just go to waste! I was glad to learn there is a charity I can donate all the boxes of unused bags etc to and I will be doing that as soon as I can.
So, the day came and I arrived at the hospital at the 11.30 time that the letter said. My sister went with me but when it became apparent that I wasn’t gong to go in before she needed to leave to be home in time for my sons she went and I cast on a new shawl and knit a few rows whist I was waiting figuring that although the pattern was simple counting to 129 after the operation wouldn’t be easy!
I went into surgery at about 4.30pm and it was really quick, about half an hour I’m told. I was in a lot of pain when I came out though and went through every single painkiller they were allowed to give me in the recovery room. I spent the night waiting for the next round of painkillers to arrive in the hopes they would work and between passing out for an hour or so I kept checking the US election results which really didn’t help my mood and sadly turned out not to be an illusion caused by the drugs I was taking.
I had a lot of cramping the first day, which is usual I’m told, although they really don’t give you a lot of information about what to expect. I understand that they don’t want to scare you with what might maybe happen, but I have felt, with this operation in particular, that I wanted to know more and I’ve been worried and confused ever since having it done. It all seems to rely on my asking the questions or looking things up online which really doesn’t feel like the most reliable way to do things. Anyway, I was given some medicine to help with the cramping which totally knocked me out for a few hours and then, combined with the anaesthetic leaving my system and said election results had me basically spending the rest of the day in tears.
Also, don’t get me started on NHS provisions for vegans in Northumberland. I had a stoma reversal, offering me curry for lunch and dinner was not appreciated, nor was the plain salad, too much roughage. I had taken snacks in with me luckily and I didn’t have much of an appetite anyway, but it is a really bad selection (if you can even call it a selection) and it really needs sorting out.
I was in hospital until the Saturday, it’s quite amusing after a while to have people ask you if you’ve been farting and pooing and to be happy when you say yes to both! The pain never really faded and I felt a bit out of it, but I figured I was just not in as good condition as I was for the first operation and it would fade. At home I really didn’t leave bed much, wasn’t very hungry and even liquid morphine wasn’t taking away the pain I was feeling, I also tried tramadol which gave me horrible side effects, but again didn’t touch the pain and also didn’t have the morphine side effect of knocking me out so it wasn’t much good.
At 10 days post-op the District Nurse came out to take out the stitches. She was really pleased with the way the wound had healed, didn’t seem too concerned about the pain (after all the muscles had been moved for 11 months, they probably weren’t too happy to be moved back again) and signed me off their books, although she did note that I was very swollen. I got up and did a few things in the afternoon, trying to push myself on thinking that if I was healed surely I was well enough to not need to be in bed the whole time. I was sitting at my sewing table doing something or other and when I leant forward to reach for something I felt a pop where the wound was. When I checked the bandage you could tell that something was coming out as it was bulging, at which point I began to freak out. I remember during the freak out, which was so severe that my sister thought she may need to slap me, thinking that it was really odd that I was reacting that way and how that showed how rarely I really truly panic about things! This was a full on proper panic though as I thought that the join in my bowel had given way which might have resulted in not only my getting very ill from it leaking internally, but also that I might have to return to a stoma bag and I couldn’t face that at all.
My sister found out where to take me, all the way to A&E which is a 45 minute drive from here and then all of a sudden I basically exploded. It seems I had a huge abscess in the wound, and I mean huge, and all of a sudden it gave way. On the way to the hospital I soaked a full size bath towel and the nurse who saw me there said she wouldn’t put me back out in the waiting area which was probably because I stank to high heaven and was covered in gore. It was literally the most disgusting thing that has ever happened to me. I did stop freaking out once I saw what colour the liquid was that was coming out and realised that it wasn’t poo, so that was a tiny relief anyway!
I very quickly was moved up to the surgical ward, A&E is at the hospital where I had the operation so they bumped me back up to the service that might be responsible for anything that had gone wrong and we didn’t have to wait a huge amount of time to see a consultant. The wound had come open again, something I didn’t know until then and was glad I hadn’t known as it would have freaked me out more. They had a look and ascertained that nothing else was wrong besides having had that huge localised infection. So they cleaned me out, packed the wound and sent me home, didn’t even need any antibiotics.
There are two ways to finish the stoma reversal operation. The first, which my surgeon did, is to close the wound as you would most other wounds. The second way is to leave the wound un-stitched but packed with gauze that is changed regularly. it can be a very dirty wound for obvious reasons. Over time the wound closes layer by layer from the bottom up and you need less and less gauze. I have now tried both ways and I much preferred the first way. You can’t fault an NHS that has a nurse come daily to my house to clean and pack the wound though. I have now just moved to every other day and will eventually go longer and longer until it’s done healing. It feels like I kind of wasted those first 10 days healing and then had to start again, but there you go.
On the way home from A&E I realised I was starving, which was the first time I’d been hungry since the operation. I also felt immediately much better, although I’m still very tired and sleeping about 11 hours a night. I think, having pondered for a while, that I might have had an infection before the operation and it was just closed over, we’ll never know why it happened though and no one seems overly concerned about it!
Sleeping though, I hadn’t slept more than 4 hours at a stretch since the operation last December due to waking up to check the bag, empty the bag, tidy up what the bag had decided it wanted to leak everywhere etc. The one time I did sleep for 5 hours I woke up to the most horrible mess of all. The first time I slept the entire night after the reversal, 10 hours in one stretch, was blissful. However I still can’t sleep for too long on my side, and my right side where the wound is I can’t really sleep on at all so my back is getting a little sore. I also still need 3 pillows, 2 more than I would normally use, as my stomach muscles and the wound object to my laying flat. It will be a wonderful day when I can sleep on my right side again as that’s my favoured side and I so miss being able to sleep that way!
Skip this bit if you don’t want to read about bowel habits, but I want to put it up here should someone be looking for experiences of having a stoma reversed. My bowel is still rather confused by everything. The new piece that has been pulled down and is being asked to basically do the job of rectal muscles rather than its old bowel job gets really excited about pushing and won’t stop. It needs to learn that it has to relax to let stuff through that it then pushes out, but I get phases, less and less as time goes on, where I feel like I have to go to the toilet the whole time and that I’m having a prolapse as it just will not relax. Then, of course, when it does relax I do have to go again. It’s called fragmented something or other and can go on for hours, back and forth to the toilet, it’s incredibly frustrating. I’m also very very windy, which is apparently a normal side effect, but as I’ve not used the toilet properly in 11 months I’ve lost the ability to distinguish between wind and poo, which means more running back and forth. Also things haven’t been stretched in a while, so it feels like I’ve done the hugest poo of my life when really I’ve done a little tiny thing, it can be very disconcerting! I’ve had an upset stomach a few times and have had to take an immodium to slow things down,which can stop it for the entire next day which again is worrying, no end of worry here. Going a tiny bit at at time for hours results not just in the usual pain you get when you’ve had an upset stomach, but also in incredibly irritated skin that has become unaccustomed to toilet paper.
Anyway, I’m assured that things will settle down with time, although it could take quite a lot of time. I don’t tend to go out all that much anyway (I’ve left the house three times since the operation and one of those was to go to A&E) so I should be ok. At the end of the day I’d rather go back and forth to the toilet than have the bag. I appreciate fully that it probably saved my life, the tumour was very low down and therefore was quite a delicate join which needed time to heal. It was also helpful during chemo where rather than having to sit on the toilet for hours in the night (which would have really not helped my already fragile state of mind) I could get up and empty the bag and then go back to sleep whilst the drugs did their worst. I did find the multi-tasking aspect of the bag rather amusing too, you could do anything and be pooing at the same time, and emptying it was much quicker than using the toilet in the regular fashion. However, as much as I tried to ignore it, and as much as I coped with it in my usual stoic ‘there’s nothing I can do about it except get on with it’ way it totally horrified me and I am so glad to be rid of it. For the first few days I did my usual checking it hadn’t leaked whenever I woke up, followed by a ‘oh my god the bag’s fallen off’ moment before I remembered that it wasn’t supposed to be there. After that I’ve not thought about it at all and hopefully I never will have to again.
So, from here I am monitored regularly by various scans and blood tests. I asked my surgeon about the odds of recurrence and basically the average person has a 1 in 15 chance of getting colorectal cancer, my chances have fallen to between 1 in 10 and 1 in 12, so not a huge jump. Also, it’s one of the slowest growing cancers there is. The tumour I had had probably been growing for a few years as that’s how long it takes for them to show symptoms like I had, so they should be able to catch it quickly should it come back and it won’t require major surgery again. Also my chances of getting any other kind of cancer have not risen, I’m no more liable than anyone else just because I’ve had one type.
All I can do now is try to get my life back again and to try not to panic constantly forever. I start back at University after Christmas (I have no idea what I was doing and haven’t looked at my research at all in a year so that will be fun!) and at some point I will be able to exercise again. I had been doing yoga and running again, god I miss the running and it was lovely to get out on my favourite routes, before having this operation, but I will have to start that all over again when the wound has healed enough to allow it. Patience not being a virtue I was born with I will be impatiently waiting.
And that’s that really, regular scans and blood tests and fingers crossed. Maybe I just got this out of the way early being 20 years younger than most people who have this type of cancer, who knows. I keep thinking about an Ani DiFranco line from Lost Woman Song, which is about abortion and not cancer but you use what you can. Although this has been horrible, scary, frustrating, confusing and generally not much fun (gallows humour should never be underrated), as Ani says …”mine was a relatively easy tragedy”. May my luck continue and this be the end of it, if not at least I know now that I can get through it.
Thanks for reading and for your support through all of this. Hopefully there will be less talk of poo and pus in the future and a lot more sewing and knitting!