Firstly, I’m sorry for not posting an update sooner. To be honest there are several reasons for that. Mainly, that cancer has turned me into some crazy superstitious person who is afraid of jinxing anything. Therefore, I tend to be quiet until I know the full picture. Secondly, two operations in such close succession has taken it out of me a little. Finally, I haven’t been able to find the words; I have had a lot to get my head around.
Let’s start with the surgeries
I should start with my two bowel cancer surgeries. I had my first surgery on Wednesday 26th June to enable my brilliant surgeon to remove my rather hefty tumour, aka Phyllis. The tumour was initially graded at T4a but the chemo had worked some of its magic and, as a result, the tumour had shrunk enough for the surgeon to feel it was now safe to operate. I think Phyllis had gone down by 1cm.
Feeling the fear!
I would like to say that I walked down to that operating theatre as cool as a cucumber. However, my very real fear of hospitals reared its ugly head and as soon as I was on the ward I was a mess. There was some ugly crying. My lovely nurse implored me to focus on my breathing; I desperately tried to calm myself down but to no avail. In the end, I was given a magic pill to help calm me. It worked a little and I was able to walk down to the operating theatre. I said goodbye to Mr C; it was now his turn to get upset and I felt immediately guilty for the fact I was leaving him alone.
In the operating theatre I was told I would be having a spinal block. I remember the operating theatre being cold and they had to turn the heating up as I couldn’t stop shivering. I then had to sit up and bend over as someone pushed my shoulders down from the front and the anaesthetist banged on my back trying to find the best place to put the spinal block. I’d had this procedure twice before during labour in preparation for my c-section and, therefore, I knew if I could sit still during contractions then I would be able to sit still during this. What I hadn’t realised was how long the whole process took. During labour it seemed to happen in the blink of an eye but this time It took about 20 minutes to get that spinal block in.
Phyllis put up a good fight
The rest, as they say, is history. I gradually lost the feeling in my legs and I fought the sense of panic that was rising before I fell fast asleep. The operation was trickier than they had hoped for. The chemo has changed my tissue; it was very sticky making operating tricky. The whole operation took about 5 hours. Phyllis didn’t go down without a fight. She bled as her final farewell.
I woke up and immediately my hands felt for my temporary stoma bag. I wasn’t sure how I would feel but I didn’t feel anything, probably because I was so off my face on drugs. As the drugs wore off and reality hit, I came to hate that stoma bag. This was compounded by the fact that one night I woke up to find my bag had leaked everywhere. I woke up in a puddle of tepid sh*t. I had to call the nurses to help. One nurse stripped the bed as the other helped me clean myself. I felt humiliated as I stood under the harsh lights shivering as sh*t was scraped off me. I didn’t sleep for the rest of the night because I was petrified it would happen again.
Getting to know my stoma bag
The stoma bag did leak again and it was decided by a nurse that the bag would be taped to my body to prevent further leaks. This was a new low for me and I felt like I was being a complete nuisance. I had to remind myself that this was temporary and I was one of the lucky ones. I now realise the emotional impact staying in hospital can have on you. I had lots of amazing nurses who seemed to appreciate my situation and they understood my feelings; some weren’t as good.
I did grow to accept my stoma bag and I appreciated the fact it saved my life. I made good progress in hospital: I was emptying my stoma bag within a couple of days and walking down the corridors the day after my operation.
The plan was for my stoma to be reversed within 10 days. This was the first time this operation would be attempted in Jersey and, as such, there were a lot of unknowns. Would it go ahead? Would it work? On day 8 I had my enema scan. There is nothing dignified about this scan. You have to lie on your side as dye is inserted into your bowel. Despite the fact I had my arse out in front of an audience, I felt relatively calm about the whole situation. I laid there as one nurse held my hand and the doctor inserted dye into my bowel. It’s not your everyday situation, it perhaps feels a little violating but I don’t think it’s any worse than a smear. I asked the doctor if the bowel had healed and he said it had. I was delighted; this meant that the reversal could go ahead. I was then told to go to the disabled toilet and wait for the dye to come out. I was given some paper to hold between my legs as I made my rather undignified shuffle down the corridor.
The stoma reversal
A couple of days later I was back in the operating theatre having my stoma reversed. This time the operation couldn’t have gone more to plan. The surgeon declared it perfect and was really happy. The stoma reversal operation happened on the Friday and I was discharged on the Monday. Just as I was about to be discharged I was told the good news that my lymph nodes had come back clear. I rather naively thought this meant I was in the clear but I now know this is not the case. I still have cancer.
It’s not over
Last week, I had an appointment with the oncologist and learnt that I’m still not classed as cancer-free. I will explain more in a later post but for now the headlines are that the chemo worked but not as well as it could have worked. The tumour when removed was still cancerous. Finally and more importantly, the tissue sample removed showed signs of vascular invasion. This means that the tumour has started to mutate and is in my blood stream. That is a scary thought. My first thought was I can’t still be ill. I’ve done the chemo, I’ve had the operations, how can I still be ill? I’ve been through all of the emotions: anger, sadness and a general feeling of hopelessness. I’ve now got my head around it and I’ve accepted I need to keep fighting. My next set of chemo begins on Friday 2nd August. Wish me luck!
Escaping it all
For now, I’m going to put that to the back of my mind. We are going to Liverpool this weekend, sans children. I’m so excited. Initially, we weren’t going due to the serious issue of adulting and the fact I haven’t been able to work this year. However, on a whim, before we had even been to the oncologist appointment, we decided f*ck it, life is too short. Now, knowing what we know, I am so happy we decided to go away. We managed to get a fab deal on a hotel and some amazing blogger friends (the Piss Off Phyllis crew) surprised me with a lovely gift that means Liverpool is going to be just what the doctor ordered.
A massive thank you to my lovely blogging friends. I can’t flipping wait for Liverpool!