It was hard to know what song to choose for this blogpost as my range of emotions in thinking about it has been very wide – from sadness, anger, frustration, resignation, relief to hope and optimism. I settled on ‘Galvanize’ by the Chemical Brothers as that is where I finally landed – I’ve accepted my latest setback and am now galvanising myself for my next treatment.
I’ve gone from my disease being ‘slow-growing’ and my doctors advocating a ‘watch and wait’ approach with scans every three months and further surgery being ‘a long way down the road’ to a much more active disease. This has manifested itself in my abdomen being very distended (like a beachball) due to a significant increase in the volume of gel (which is how my cancer progresses). Although it sounds very superficial, my initial frustration was wardrobe-related. None of my dresses fit anymore and I’ve had to buy new very baggy, maternity-like clothes to hide my bump. Thank goodness big sac-like dresses seem to be in vogue at the moment! I’m not in any pain, for which I am thankful, and everything internally is still working well, but this is not sustainable. I do experience a fair bit of discomfort from my size – shortness of breath, soreness when I have been sitting upright for an extended period of time, and I’m not able to jog anymore (which frustrates me hugely). If we leave it to continue, my beachball will become a spacehopper and the gel will crowd out my organs. I am also suffering muscle wastage as the tumour is taking all of my nutrients which means that my arms and legs have gotten quite skinny and I’m a bit boney, and that’s not sustainable either. So, back to Basingstoke to my brilliant surgeon and the wonderful team of nurses for another horrendous op (and just typing this is making me cry). I can’t believe that I will go through that again, but at the same time, I’m glad that we are doing something.
This latest news is almost harder mentally than my original diagnosis as this time I know what to expect and this time I’m going in to control the disease, not to cure it. If I let myself dwell on it for any amount of time I start to have flashbacks of waking up with the ventilator down my throat, all of the tubes, drains, catheters, etc. the hallucinations from the morphine, the long nights lying awake in hospital and the horrific back pain that took so long to get under control. On the positive side, knowing what to expect will help me to prepare better this time and I know that I got through it before and will get through it again.
This time I may get away with a 6-hour op rather than 10 as there are less organs to remove. They will still have to open me up from breastbone to pelvic bone, so a similar scar to last time. They will take out the gel, remove my colon, perhaps some other bits, do HIPEC (heated chemo) and give me an illeostomy. That will take some getting used to, but lots of people live active lives with stomas, and I’ll manage. I’ve been speaking to people who have had stomas and reading up on it. I’m very grateful to people for sharing their experiences as it makes it much less daunting.
In terms of ‘galvanising’ myself, my wonderful husband has bought me a cross-trainer which I’m using as often as I can, I’m going for dog walks with friends, I’m trying to carve out time for mindfulness and relaxation and focussing on my new job (which I love), the 30% Club campaign and my cricket board. As was the case the last time, having such wonderful support from family and friends and having a strong sense of purpose really fuels my resilience tank and will help me to focus on recovery after the surgery.
I’m scheduled to have the surgery on the 25th November so that I can be home in time for Christmas. Hopefully a much shorter recovery this time!
And please do keep an eye on the blogsite for updates. Trend will be taking over from the 25th November – all of your supportive comments mean so much to both of us. It really helps to know that we have such wonderful friends.