Let’s see if I can get this up to date now. Don’t know about you, but I’m getting a bit bored with the whole sorry tale now!
Although I did feel much better than the first time I came home, I still wasn't fit for much the first few weeks. I’d been given a booklet on what not to do after major abdominal surgery, so no driving for at least 6 weeks and until I feel I’d be able to do an emergency stop, no lifting anything heavier than a kettle and no hoovering… Shame!!
To begin with, I didn’t even go out of the house too often – it was still snowing, and the lane was quite icy, so I was scared to go out walking incase I slipped and did some damage, and I was too uncomfortable to even sit in the car. As each week went past things got just a little bit easier, eventually the snow stopped and I was able to go out for walks. Firstly just down to our nearest neighbours, about 200yds away, then halfway down the lane, and eventually to the bottom of the lane and back. To start with I’d to hold on to my tummy because the muscles weren’t quite up to the job themselves – strange feeling and not very pleasant.
Finding clothes that were comfortable enough to walk in was a trial too. Ideally, I’d want to wear trousers for being out walking, but all mine sit just below the waistline, just in the right place to cut the tummy scar in half, and any movement made the rubbing even worse. To start with I tried to stuff padding down my front to try to stop the friction, but that wasn’t ideal, so I took to wearing skirts with thick tights and wellies or walking boots! Not glamorous but it does the job! Even tights and underwear bring their own problems – too tight and they press against the bag too much and can cause leaks. As a result I’ve had to go a size bigger with everything. But bigger also means longer, so you end up with the inevitable “Nora Batties”! (For those of you who may not know,
Nora Batty was a character in the sitcom “
Last of the Summer Wine”, who always famously had wrinkled stockings.) I have reached a stage where I can wear trousers again, but they still rub against a tender part of the scar, so I usually end up having to unbutton them at some point during the day!
I’m not going to gross you out describing all the practicalities of learning to deal with a stoma, but if you are a glutton for punishment, Drew wrote a really funny
blog post on the subject. At least, I think it’s hilarious - having had to deal with some of the situations, I’m here to tell you that it’s all absolutely true. It might just make you feel queasy though, so be warned! Fortunately Stella (yes, she now has a name – seemed to be appropriate since she seems keen to join in the conversation sometimes!) has behaved herself pretty well so far, and there have been no major dramas or embarrassments.
It took a bit longer to get back to driving again. I just couldn’t sit in a position upright enough to be safe, so during the week in March when D had gone back to work and the snow came again, when the District Nurses couldn’t get up the lane to come to me, I had to ask one of my neighbours with a 4x4 if she would take me down to the clinic every day for my dressing changes. Fortunately, we have really, really good neighbours and I was never left stuck. It was actually great to get out of the house every day, even if it was just to drop my pants again, but we went for a coffee afterwards most days as a treat. Eventually, I did manage to drive down to the village – about 3 miles, sitting on the pressure cushion the District Nurses gave me. At the moment, I can manage about a half hour journey – still sitting on the pressure cushion, but that’s my stretch.
On 26th Feb I had my first appointment with the oncologist since the op. He tends not to give much away, but I think he was pleased to see me looking well, and surprised that I said I wasn’t taking anything in the way of painkillers for the bum wound. It appears that I seem to have quite a high pain threshold – not that it’s really painful, just uncomfortable. It might have more to do with determination not to take anything if I don’t absolutely have to. I’d been taking paracetamol and ibuprofen for months at a time last year, and I don’t think it can do your liver or kidneys much good….
Anyway, he said that there had been 9 lymph nodes in the tissue that was removed during the operation, and the pathology results showed that they were all clear. Much, MUCH better news than I’d been expecting. The report described it as a Poorly Differentiated Squamous Cell Cancer – T3, N0. Originally I’d been given a grading of T4, N1 so obviously the chemo and radiotherapy had had some effect, even if it had stopped after a time. They would have been happier if they'd managed to get a bigger margin of clear tissue so at the moment he hasn’t ruled out further treatment – I’ll have to wait for scans to confirm whether or not that might be needed. There's also a high risk that it may return, but I'm not sitting about waiting for what might never happen. In the meantime, and before any scans can be done, the most important thing is to get my bum wound healed.
Everyone says the wound is very clean – since I’ve been home, the number of Silvercel dressings required has been reduced from 4 to 3 to 2 to 1½ to 1, but although it means the wound has come in a bit, I’m told it is still quite deep and it’s going to take several months yet before it’s completely healed. Recently I’ve developed what is pretty much a constant ache, but I’m told that’s “a good thing” as it means the nerve endings are growing back again. Unfortunately, it also means that I’m less able to sit for long periods of time again.
Last week, the dressings were changed from Silvercel to Sorbsan, which is a seaweed based material. Apparently, long-term use of the same dressing isn’t advisable, and a change should kick-start the healing process again. Usually they'd try an iodine dressing, but the District Nurse said that would probably send me flying through the roof, but this is a good alternative.
On 22nd April, it was the first anniversary of my diagnosis which I suppose is a bit of a milestone. At some point in the future, it might be something to celebrate - ticking off the years of survival. Even better would be to forget that it's any kind of anniversary at all, but that's going to be pretty hard, being that it's also my mum's birthday... As it was, this year I couldn't get away from thinking about someone who wasn't quite so lucky. I saw him a couple of times in Radiology during the summer with his wife and baby boy and later found out through mutual friends that he also had anal cancer. Last I'd heard was that he was doing fine, but I found out a couple of weeks ago that he'd passed away at the beginning of December. I don't know any detail and there's probably much more to it all than this, but I understand it wasn't the cancer, but the infection he got after surgery that was the problem. He wasn't even 30. It's just not bloody fair. It was also a bit of a wake up call. At times I've appeared to be a bit flippant about what I've been through - perhaps to protect those closest to me. Maybe to protect myself. I'm sure the oncologist sometimes looks at my smiling face and thinks "she hasn't got a clue". But I have. And I'm very grateful.
Yesterday, I had an appointment at the hospital again, this time to see the surgeon and someone from the Tissue Viability Team. In the end it wasn’t him I saw, but the Stoma Care/Colorectal Nurse Specialist, who to be honest, was probably more useful at this stage. She had a look at my tummy scar, asked about how the stoma was doing, and had a look at my bum wound. She seemed to be pleased with everything, but said she could see why I was so uncomfortable sitting! My next appointment for that clinic isn’t for another 6 months when hopefully I’ll be much further down the healing process. Then in 3 years I'll be called back for what sounds like a colonoscopy, when they'll go in through the stoma to examine the upper bowel and make sure everything is fine and healthy. That'll be something to look forward to. Not. At least she said I'd be under anaesthetic when it happens!
After the appointment, I hung around for an hour waiting for Tissue Viability to show, but after paging them twice and getting no reply I was eventually sent back up to the Ward to get my dressing done, rather than wait about any longer – by that time I was too sore to sit, so was standing and leaning against a wall. I know they’re really busy people, but it is a bit frustrating sometimes. Back at Ward 32 I was seen straightaway by one of the nurses who had been taking care of me when I had the infection. She said it was really interesting to see how the wound was doing as they’d not normally see them again – she said it was MUCH smaller than when they were dressing it every day, but still has quite a way to go.
So that’s where I am at the moment. I can get out and about on my own a bit now, which is great, but sitting is still an issue which has a knock-on effect on my ability to drive for any distance. And I’m slow… and stiff . I can walk longer distances now, but it has to be at my own pace. I'm getting there!
