The day I always thought I would escape.

1 minute read time.

21 May 2023

Hi and apologies, I’ve never written a blog or partaken in social media, but suddenly I find myself wanting to document my journey. A year ago I visited my GP with a pain in my chest, I have had stomach ulcers in the past and knew it was similar. I was put on pantopazole and when I asked about a gastroscopy, I was told not necessary. I’m a stubborn ignorant creature and I didn’t take the best care of my health, so I took the GPS advice, took my tablets and merrily went on my way. Everything improved, no more acid reflux no more pain, but I couldn’t stop taking the tablets as every symptom returned immediately. Six months in I went back for repeat prescription and asked ‘ nothing tastes the same anymore, should I have a gastroscopy?” Again no, so off I toddled. I’m 55, pretty fit, no health issues aside from this stomach issue and stress but life was really turning out bloody good. After a year I self referred for a private gastroscopy without sedation on 21st April. 4th May went to get results and as soon as the specialist said you have an ulcer I was smugly high fiving inside, like some new medical told you so genius. What I didn’t understand is when she proceeded to say the biopsies came back as suspicious of a malignancy….. I smiled and said ok and didn’t listen to anything else really, walked home, pretty sure I had dreamt it and my first pit stop was my best friend. When she asked how it went I felt sick and didn’t know what to say so I blurted out “I might have the word we don’t speak of”. She started crying and I was confused. I was certain it was a mistake and I would be completely embarrassed when I realised I had got it wrong. I need not of worried, it wasn’t a mistake…. ( sorry not a great at typing so I’ll continue in stages)

MillyE over 1 year ago

Day 35 post op- Its my first week back to work. I have hit the ground running and wonder if that suits me so I do not have to think too much. All has gone very well aside from a minor issue with part of my spleen not having blood supply so it has necrosed and as expected low iron. I go walking everyday. Eating gets easier every week but is still a challenge and the wonderful term " dumping syndrome" doesn't come close to explaining the joys of that curveball. It should be renamed "nightmare on elm street all episodes combined". This week I finally managed to stabilise my weight loss which was coming up to 20% and considering I was bordering on underweight to begin with I now look like some wrinkly shrivelled old hag. Going out shopping or for lunch is not the pleasurable experience it was before because food is no longer my god to worship and when im shopping I get back pain, which I've never had before. BUT im here and doing great. Of course Im inpatient and expect to be back to normal by now but unfortunately not quite. Im still very tired and need to rest midday most days which is quite alien to me. Lucky I can work from home which has been a godsend so I can take a rest on my lunch break. The incision was much larger than I thought it would be but my days of prancing in a bikini are long gone. The wound healed well. Unlike all the literature about bowel movements after I had to be the opposite and could not go to safe my life. When the doctor put me on iron tablets I could have cried because they would make it much worse so thankfully he gave me something to resolve the unpleasant situation. It seriously gave me more grief than the actually surgery. It was great to keep in touch with other members either further along of at an earlier stage. This really helped and made me feel less isolated.
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Fortaleza over 1 year ago in reply to MillyE

your strength is inspiring. I love what you said about not being in control of the illness but how you face the journey. I’m waiting to see a consultant and arrange a biopsy of my lymph node. Not diagnosed yet but I’m pretty sure is not looking good. But whatever it is I’ll try to be as positive as you are. I hope your recovery is smooth. All the best
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