Update and some worries/questions for my bowel cancer crew please xx
Howdy y'all. Sorry for the long silences between posting. I'm trying to catch up with how everyone is! I have been so quiet as my husband and I were planning and implementing our back garden wedding. On top of all the work that entailed I also had a house Full of visitors for the wedding. It was wonderful although now I totally understand why people pay a fortune to get married in a hotel or abroad....cuz it's a shit ton of work! In addition I stupidly ended up in hospital for 4 days due to severe dehydration etc literally just days before the wedding. It was all a bit hairy there for a while. Anyway I wanted to pick your brains over a couple of things if it's ok. For those on capecitabine regimes....I started on cape plus irinotecan, cetuximab and denosumab last week. This should be only for this one cycle (cycle 10). When I got married I had 2 weeks off Chemo. This was as much for the wedding as it was because the toxicity of folfiri plus cetuximab had taken its toll on me. I had multiple infections, was very dehydrated and had blistered skin all over my face neck and chest. Although the 2 weeks off resolved my skin and infection issues it allowed my Cancer a window of opportunity. My bone mets surged back to life in the second week ? my oncologist decided due to this that we couldn't delay any more to allow me to have a new picc line put in so started me immediately on Cape plus cetuximab and irinotecan and denosumab. I'm now a week into this regime and I've noticed I'm losing weight like crazy and I'm starving hungry! I'm not having too much diarrhoea or anything so the weight loss is now worrying me. I don't know if this is the capecitabine or if it's my cancer revved up from the break. Has anyone else had this effect?
On another note .... Those of us who are not curable.... how do you maintain hope for your future? I've found myself quite low a few times over this. I think in part I'm still coming to terms with the reality that no matter how well I do...my future is never going to be the quality or length I had always envisioned. I struggle often knowing I will not see my kids go to university or get married or become parents. I was laughing at a picture of my 8 year old nephew today dressed up for a parade and saying to his mum...we need to show him this when he turns 18! Then remembered that I wouldn't be there for that family event. I am a person who loves to learn and explore and challenge herself and at times now I think...well what's the point? I don't want to worry y'all. I'm not despondent. I'm functioning pretty well and I have even returned to my beloved work on a phased return. I'm going to the Guns n Roses concert next week in London etc so I am planning and doing fun things. It's the day to day hope and looking forward to my future I struggle with. I'd love to hear any stories or bits of advice or even if you want to share that you have maybe felt the same. Thank you so much everyone. Lots and lots of Yankee love for y'all