Lucy King, Cheltenham
In late October 2019 I began to experience abdominal pain particularly after eating. I had no other symptoms whatsoever at that time but went to the GP after about three or four weeks of this. She advised me to monitor what I ate for a while, which I did and to return if there was any change.
Bowel cancer did not occur to me at that time, thinking that it was perhaps irritable bowel syndrome (IBS) or something like that. However in the following couple of weeks I began to lose weight which was unusual for me and so returned to the GP. By that time I did begin to fear the worst but my doctor immediately referred me to the hospital given my age and symptoms. I saw a doctor a couple of days before Christmas 2019 and he referred me for a colonoscopy. There were delays in arranging this due to my pre-existing holidays etc and I finally had the procedure in mid-February
2020.
I was told at the end of the colonoscopy that there was a tumour which was almost definitely cancerous. The following morning I was contacted by a fabulous nurse from the colorectal team and she arranged for me to meet the surgeon the following day. Two days later, he operated to remove the tumour. He was able to do this with keyhole surgery leaving only a very small scar and with no need for a stoma.
At the post-op follow up, the surgeon advised that he had removed 30 lymph nodes from around the site which were all clear. However, whilst in hospital I first became aware of a very obvious 'growth' in my left clavicle which at that time felt to be about the size of a small satsuma. A PET scan suggested that this was a cancerous lymph node (supra clavicular fossa) and I also had a similar smaller one in an unspecified part of my abdomen. I was never formally told what stage the cancer was but was told that it was deemed to be 'incurable' and I was put on palliative chemotherapy.
I started chemotherapy in April 2020. I had oxaliplatin and bevacizumab infusions every three weeks alongside capecitabine in tablet form for two weeks. Felt very 'out of sorts' for about four or five days each time but then, aside from fatigue, felt generally ok for the rest of the cycle.
A PET scan three months later confirmed that both tumours had shrunk significantly and so I changed on to a far less aggressive treatment regime of the bevacizumab fusion alone along with capecitabine tablets as before. The main side effects were very painful feet and hands and diarrhoea along with general fatigue, but all manageable for me. I had 31 rounds of this treatment with each three-monthly scan confirming that the tumours remained 'dormant' throughout.
A scan in October 2021 showed suspicious activity in my thyroid. Two biopsies remained inconclusive and so I had half of the thyroid removed at the end of March 2022. This proved to be a benign nodule requiring no further treatment. However, in May 2022 the PET scan suggested that the previous tumours had now 're-activated' which was confirmed with biopsies and a bronchoscopy/EBUS procedure.
In June 2022 I started to receive targeted immunotherapy instead of the previous chemotherapy.This involves daily encorafenib tablets and a cetuximab infusion every other week. This had initial unpleasant side effects for the first four to five days including very 'tingly' skin and head and muscle pain in my legs. That soon settled down and the only side effects after four treatments are mainly skin related with 'pimples' on my body (mainly upper arms), along with the usual fatigue. I am due a further PET scan in September to see the effect of the current treatment.
As one might expect, my life has changed in many ways since my incurable diagnosis. I have not returned to work since the diagnosis partly in order to reduce the stress of my demanding job as a family mediator, and to make life easier with the regular demands for treatments, appointments etc. However, my husband and I try to live our lives with cancer in the background rather than allowing it to control or even take over daily life. The diagnosis made us re-evaluate every aspect of our lives and prompted him to bring forward his retirement. This has also enabled us to simply enjoy spending time together and planning and doing anything and everything we want to do!
Read Lucy’s #thisisbowelcancer article about how to talk about cancer here
