Hi everyone,
It’s been a while again since I’ve been here but things got a bit ugly at the end of last year. It’s one year since I got my diagnosis and what a big one. First up I’m happy to say I’m still here although it was touch and go for a while. I started experiencing crippling insane amounts of pain in September that morphine and even Fentanyl patches didn’t control. When hospitalised for the first time in September it was discovered that the largest of my bowel tumours had developed an intussusception - basically the bowel had telescoped back in on itself where the tumour was in an effort to get rid of what my body perceived as a foreign object. The pain was a result of the narrowing/obstruction of the bowel and my bowels increasingly strenuous attempts to shift it. After 24 hours in hospital on a drip and IV pain relief, it released itself but continued to obstruct with increasing severity and shorter and shorter times in between. The surgical team were reluctant to operate as they weren’t 100% sure what they would find if they opened me up.
Despite the pain, I went ahead with my planned and booked trip to India. Wow, what a place. Incredibly hard travelling but such history, the art, the architecture, the people, the vibrancy - it was wild and I’m so glad I made it. I got home mid November and then the problems really started. By December I was spending more time in ED than at home and finally my bowel blocked. What an excruciating revolting experience that was, when the bowel blocks completely you vomit your own faeces as the body tries desperately to shift the block. This time they did operate but only after several very confronting conversations around my DNR wishes, the 30+% chance I could die on the table or shortly afterwards, or the possibility they would open me up and it would be so much of a mess that they’d close me up again and sent me to hospice where the estimate of time was 3 days to two weeks. All this, the weekend before Xmas.
I’m happy to say the surgery went well, I didn’t die and while I’m not back to where I was pre-September, the pain has abated somewhat although there is yet another small intussusception in my small bowel that is giving me a bit of grief. I’m in a holding pattern now as immunotherapy hasn’t worked and my adrenals are so large they are starting to crowd my liver, pancreas and vascular artery. Next step is probably further surgery to remove them completely. But that’s when I’ve fully healed from the bowel surgery so I have a couple of months of getting myself fully well again and have planned some fun stuff/trips to make good on my intent to keep ‘living’ well as much as I can with this horrible disease.
Xx Guilia
Hi TheGoodLifeNZ cancer anniversary’s are an odd time, but very often a time to reflect on what you have been through. I am so glad to read that you were able to have your amazing holiday! Although you were in so much pain the adrenaline must of seen you through.
The operation must of been so scary for you, but it sounds like you had no other option but to go through with it, and thankfully it worked out well for you. Although you may face further surgery, I’m sure all the exciting plans you will have in place for more trips after, will see you through.
Wishing you well in your recovery from the bowel surgery, and happy holiday planning!!
