Profile

alsopkj

Regular user
Female 58 y.o.
ABOUT ME

After being sent home 3 times by A&E doctors after having severe stomach cramps in 2017 , leaving me unable to sit down or work, another doctor spotted tumours on my small bowel, I had an operation to remove them promptly then had chemo for six months. The only other symptom was that I was anaemic. After a year on the sick, I was then generally healthy until June 2020. I had a check up ct scan in February 2020 but then went away before lockdown hit in March. I did not hear anything about my scan result and presumed stupidly that no news was good news. I visited the GP with what I thought may have been a urine infection in June who referred me back to UHW. It turned out that a tumour on my ovary was noted on my scan which the GP saw on my records but no action was taken. By the time the tumour was removed in July 2020, it measured 21 cms! I was then shocked to learn that my small bowel cancer was Stage 4 (therefore incurable) with a 0-5% prognosis of living more than 1-5 years. Being 57 and a single parent to a 13 year old daughter and my disabled mother’s carer, it was all difficult to accept. I have now had 6 cycles of Folfiri through a PICC line and had as clear as ct scans can be in December with another on 15th Feb after which it will be decided whether I can have a break from palliative chemo for a while!

As an update, my February scan was clear and chemo (and PICC line removed) was stopped immediately - I chose not to have the next planned chemo session (with my oncologist’s agreement) as I found the side effects of fatigue and loose bowels very difficult to manage by my 7th chemo. I am still very fatigued 3 weeks later but hoping things will
Improve soon. My next scan is on 20th April (which my oncologist thinks will be clear) then I will have another one three months later.

As a further update, I have had 2 clear ct scans thankfully although at my recent one a clot on my lung was noticed and I've been on daily blood thinning injections since. I'm hoping to move onto tablets soon once I have a specialist telephone call. My oncologist advised that I will remain on meds for 6 months with another scan in10 weeks.

My energy levels are much improved and I am walking 5 miles a day usually after taking ill health retirement in March. I can manage inclines and many stairs etc much better although out of breath for a while afterwards. The weight gained particularly around my stomach is not shifting yet however!

I was also diagnosed with a rare eye disease a few months ago which will get progressively worse but was told that I shouldn't go totally blind as I was diagnosed at a later age! The condition is genetic.