This post is a repeat of what I posted on Facebook on Wednesday, for those of you who do not like the Tumour Has It Facebook page. Apologies for not posting it on here sooner….
I’ve been pretty silent since my last blog, despite promising to write more often. Unfortunately it is because things have been very up and down since I was discharged from UCLH. I have, without a doubt, had some fun medical-free days. On those days I was so enjoying living like I used to, feeling normal, that I didn’t want to write because my time was my own and I wanted to spend as much of it as I could with family and friends. I didn’t want to or have to think about cancer and so the good days really were a lot more than just good. I appreciated and loved them far more than I would have ever thought to before all this.
When the bad days came, it was a massive slap in the face. After leaving UCLH after my bowel surgery I really wholeheartedly believed that I had got to the end. It hadn’t been something I had dared to believe before, at any point during my treatment. But I really, truly felt my treatment had ended and it was finally my time to celebrate because things could begin to go back to something like normal for my family and I.
A few weeks ago, however, I began to feel unwell. I was checked by my surgeon who performed my abdominal surgery, who was content with my progress but was concerned about the temperature spikes I kept having. A few days later, when I was still experiencing fevers, hip pain and feeling unwell, I was advised to go into A&E by my oncology team. I wrote them off as being overly cautious and told them I would not go. I was convinced it was simply a virus – no big deal. But the day after that, I deteriorated further until I could barely put any weight on my right leg. It had gone too far; I knew I needed to bite the bullet and agreed to go to hospital. I was there for six days in total, which wasn’t too painful a stay at all because I was lucky enough to have the best ever bay mates. What hurt more than anything was the crushing disappointment of realising that this was far from over and that I couldn’t see a future where I would get out and actually stay out of hospital.
St Helier investigated all potential sources of the suspected infection. All sources were ruled out and it was decided that a virus was to blame. They were happy to discharge me but kept me on some oral antibiotics, just in case there was an infection somewhere that they had failed to locate. Leaving hospital that time I felt pleased but fully expectant that I would be back there before long. From the tone of this post you have probably correctly guessed that I am back in hospital, this time at UCLH rather than St Helier.
I did go to St Helier on Monday after I suddenly started feeling ill and ridiculously cold, complete with white and blue fingers and nails. They gave me one off intravenous antibiotics and oral antibiotics to go home with. Today I had my post chemo follow up with my oncology team to review the CT scans I had done last week and discuss the plan going ahead.
The good news is that the CT was clear, that is my chest, abdomen and pelvis are sarcoma free. Obviously this is fabulous and we are ecstatic. However, our celebrations have been somewhat dampened, because I have been admitted again at UCLH and realistically I’m not getting home again any time soon.
If I’m honest, I knew something was not right and I have known it for a week or so. My lower back on the right side has been bulging further and further, becoming painful to touch with increased redness. Today I was reevaluated by my abdominal surgeon and it appears there have been some complications from the bowel surgery I had a couple of months ago.
I have a fairly nasty infection in the section of small bowel that was obstructed and so bypassed during my bowel surgery. There are a couple of reasons this could be… One of the suggestions is that the blood supply to that part of the bowel has become compromised; another is that the bypassed bowel. The possible solutions to this are as follows:
1) best case scenario: they pump me full of antibiotics. If the infection is not anything to do with a poor blood supply or the perforation is able to mend itself, this may be enough. This is unlikely.
2) most likely scenario: they need to operate again to remove that section of bowel. This is what they had hoped to do during my last bowel surgery but were unable to do so as the lining of my bowel was so thin and it was so stuck in the hole where the leak had previously been, that it would have perforated. My surgeon told me there is still a 90% chance it will perforate but they have no choice. If it does, they will wash out the area and fit a biological mesh to stop the good bowel from herniating again. There is a chance, which isn’t negligible, that this biological mesh will get infected and it will need to be replaced again.
It’s all a bit scary, and not because of the prospect of further surgery; it will be similar to my most recent bowel surgery and I know I can do it again. What scares me is this massive uncertainty about how things will progress from here, and how long it all seems to be dragging on for. It feels like one step forward, two back. I have gone from truly believing I had crossed the finishing line, to sitting here in hospital fully expecting to have at least two further surgeries. I may be right, I may be wrong, but that is the direction I see things taking. When you don’t feel as though you are getting anywhere it is hard to keep your chin up and keep ploughing on determinedly. I told my surgeon that I was scared I was going to die from this and he assured me I wasn’t. I hope he is right.
At this moment I feel a lot better mentally than I did six hours ago, when I was bawling in the toilet to my mum. But I guess, like I say to the people around me, even if you lose hope and can’t see you’re getting anywhere, you can’t just lie down and give up because otherwise what was the point of going to all those appointments and having all that crappy treatment? Carrying on isn’t brave, it’s just realising that the alternative is the thing you’ve been fighting against the whole time. We technically have a choice but equally there is no choice, we have to just get on with it even if we don’t want to.
The situation is shit. I saw it coming which is why I practically suffocated my puppy with hugs when we left today for my appointment, but hearing it out loud still stings, it still feels almost personal. And it never feels any less personal, even after you’ve had shit news for a solid eighteen months. I know things could be worse, but this still feels horrible.
Thanks for all your continued support; I will try to post again at some point soon with an update, if there is one.