The False Beginning
It all started in October 2022 (although it almost certainly started long before then) when I caught Covid. I woke up one morning to feel my face all swollen up and feeling terrible. As a nurse, I took the obligatory LFT test which immediately went positive ~ I had Covid! Because I worked with vulnerable patients I had to have at least 10 days off and only return to work after having negative LFTs on two consecutive days. I felt okay after two days but returned later as per instructed.
However, in late January 2023 I started to feel really lethargic all the time. I put it down to long covid but it was getting worse and I started to lose weight. I had various blood test which all came back within normal ranges. I was put on the waiting list for the Long Covid clinic. I was working as a Charge Nurse in a psychiatric hospital, a ‘job’ that I really enjoyed. However, I found that I was struggling to keep up with my workload and couldn’t concentrate at meetings etc. My standards were dropping dramatically so I made the hard decision to revert back to a nursing role. I felt less stress immediately but my symptoms got worse.
Eventually, in late May 2023 I spoke with my GP who referred me on a Vague Symptom Pathway which led to me getting an emergency CT scan. Everyone tells you not to do it but you always do – I Googled Vague Symptom Pathway, It gave me a choice of two conditions to pick from…’patients who present with vague (non-specific) symptoms could have a serious disease or a cancer.’
I went for an an emergency CT scan and by the time my wife and I got home we received a call from York Hospital with an appointment with a consultant the following day. It turned out the consultant was the top man in oncology. As we waited to see him I said to my wife “what if they don’t know what it is, what happens now?” She replied “they wouldn’t get the head of oncology to break news to you that a GP could do instead.” That’s when it started to sink in and the alarm bells started ringing loudly!
The Appointment That Changed My Life.
The consultant started asking various questions including are you off work at the moment which when I said I was still working full time he sounded shocked. He went on through various symptoms such as difficulty swallowing? (NO), stomach pain? (NO), indigestion that doesn’t go away? (NO), feeling full after eating small amounts? (NO), a loss of appetite? (NO), feeling or being sick? (NO), dark poo? (NO), weight loss? (YES), tiredness? (YES).
He then turned to face me closer and lowered his voice. I am sorry but I have to tell you that you have advanced Stage 4 stomach cancer and that it is inoperable and incurable!! They would do everything they could to slow it down and keep it at bay. We didn’t ask for any indication of life expectancy but on checking later it would be about 18 months, hopefully longer because I am still relatively fit.
Let Treatment Commence
I commenced an intensive course 8-week course of chemotherapy at York Hospital with the view that if the tumour had successfully reduced in size I would then have surgery to have my full stomach removed. My oesophagus would then be attached to my small intestine. At the end of this treatment I had further CT scans and endoscopies which showed that the tumour had unfortunately NOT shrunk enough to operate. I was back at square one.
On November 28th I met with a specialist at St. James Hospital in Leeds. They say they couldn’t operate because the tumour is also in some important vessels (to the spleen, liver and stomach) and if they operated there would be still be cancer cells left. Radiotherapy MIGHT be an option and they will discuss that but again it would only be to keep the tumour at bay. They might consider more chemo but not as intensive as I’ve been having and again it would just be to keep it at bay. Whatever was decided, it would be palliative care.
On December 14th I had another appointment at St James where I was told I would be starting chemoradiotherapy, a mixture of radiotherapy and chemo. This would consist of 5 consecutive weeks of daily treatment. Each week would consist 5 radiotherapy and 1 chemotherapy session.
I started this treatment on January 9th this year. Three months after it finishes I’ll have more scans to see how it has gone. It won’t cure it but will hopefully keep the tumour at bay or slow it down. The risks are far higher because of where the tumour is but nowhere near as high if I didn’t have the treatment!
The Side-Effects Are Horrible
At the end of week 3 of my chemoradiotherapy the promised side-effects finally started hitting home. Severe stomach cramps and feeling nauseous all the time so struggling to eat. I am losing wait so might have to have a nasal feeding tube fitted.
At the end of week 4 I had my consultant review where I was told my bone marrow levels are low so might not be able to have my next chemo session. I am continuing to lose weight so been prescribed stronger pain relief and anti-sickness medication and build up drinks.
At the end of week 5 the side effects were awful – feeling sick all the time and unable to eat (have lost half a stone this week). Had Stomach pain most of the time. The Sunday was the worst day so far. Collapsed 4 or 5 times in the morning so rushed through to St. James. Vital signs were sky high. Had a chest X-ray and was put on an IV drip. It appears to have been a mixture of not eating enough etc and taking High Blood Pressure medication prescribed when I was 2 stones heavier leading to my blood pressure going disastrously low.
The chemoradiotherapy has just ended but will keep working in my body for several months. I will then have further CT scans and endoscopies etc to see if there is any change in the tumour. It is now a question of wait and see.
Work And Finances
At the time diagnosis I worked full-time as mental health nurse. Unfortunately, due to my diagnosis, treatment and severe side-effects etc I was unable to work and have been off sick since September 2023. I was initially paid fully but will go to half pay on December 1st. I now only receive state benefits and PIP which is a drop of 75% of my wages. It doesn’t amount to enough to pay my bills and general living costs. In addition to this, I have had to travel daily from York to Leeds (a 60-mile round trip) which ahs cost a fortune
As a result, I am humbly turning to the Internet and hoping I can raise enough funds so money troubles aren’t another issue to deal with whilst dealing with my cancer.
I started a fundraiser in the hope that I could keep my finances in check in order that I can concentrate on my treatment etc. If you would like to help in any way you can donate ANY amount at Paul’s Stage 4 Stomach Cancer Fundraiser
PROTECT ALL WILDLIFE 