Janet – aged 56
Newcastle Upon Tyne
Stomach Cancer
If I had been told at the start of 2020 that the world was about to go into a pandemic, and I would have cancer at the same time I would have thought it was a sick joke!
However, in the middle of June, 3 months after lockdown I’d had a bad stomach for about 3 or 4 weeks, it was like pain in my lower tummy and a bit of diarrhoea – nothing too horrendous, I hadn’t been sick and there were no signs of blood in my poo. Due to the pandemic, I had brought my Mum up from Manchester in March to stay with us as she couldn’t cope on her own. By mid-June she was driving me mad and I thought the stomach issues, plus tiredness and feeling a bit down were due to the stress of having to cope with living through a pandemic with my Mum! Anyhow, I did start to think that my stomach ache had gone on a bit too long so I contacted my GP.
He got me to do a poo test and took some bloods, it turned out that I had a stomach bug for which the GP gave me a couple of types of antibiotic. Within a few days this cleared up my symptoms really well and I felt great! It was then mid July and things Coronavirus-wise were easing up a bit so I took my Mum back to Manchester, not realising then that I wouldn’t be able to see her for another 8 months! Two days after getting back from Manchester I had a colonoscopy booked, which I thought was just a belt and braces exercise – I realise now that the GP probably could see that the markers in my blood tests were not great. I got told straight away after the colonoscopy that I had bowel cancer; it was a huge shock as by this time I had no symptoms at all. I then a horrendous wait of 3 weeks, during which time I had a CT and MRI scan before I found out how bad the cancer was. Anyone who has an initial cancer diagnosis, but doesn’t yet know how bad it is will know how utterly terrifying this stage is – I had no idea if it had been caught early or not (I had been told it was a large mass and the word LARGE didn’t shift out of my brain for the whole of those 3 weeks) Strangely, the pandemic worked in my favour at this point – I had decided not to tell family and friends until I knew more detail of what we were dealing with, and it was quite easy to avoid meeting people during this time.
When I saw the consultant and he said that they were treating my cancer as curable, that was a GREAT day, I wasn’t really bothered what treatment I had to go through as long as I had a good chance of surviving! A week later I was in having surgery. When I woke up I realised that I had a stoma (a bag on my stomach collecting my poo) that was a bit disappointing but I still didn’t care, so long as I thought I would survive. I was supposed to be in hospital about 5 days, but ended up being in for 11 as the day I was due to be discharged I started to feel really unwell, by late afternoon I was retching up green bile and in the evening they put a tube down my nose into my stomach to try and drain off the fluid and reduce my sickness – it turned out my system had decided to go to sleep.
I had felt really fortunate that during my stay I was allowed one visitor – which was my husband who walked in and back every day to avoid using public transport (he doesn’t drive). I spent my evening watching TV that he had downloaded to the i-pad for me. I felt really quite unwell for a few days but then started to pick up so was very pleased by the time I went home to be back to my own bed.
Due to having a stoma I had a nurse come to my house very regularly for the first 6 weeks to help me learn how to manage the bag. The stoma bag wasn’t my friend really – I knew it was necessary and all that, but it kept leaking so I had to set my alarm during the night to keep emptying it so I felt really tired in the first few months.
In October I started chemotherapy, which was a combination of injection and tablets. Fortunately the chemo for cancer doesn’t make you lose your hair, so I was really grateful for that. The chemo was okay, the good thing about it was that it was just a few hours in hospital each time for the injection and then you take the tablets at home. I was prepared for the side effects and it wasn’t too bad. My husband had become great at preparing the right kind of food for me – I seemed to eat a lot of his very good mashed potato ! I went off tea though, which was a strange sensation as I normally drink lots and lots of tea! One of the most difficult things was trying to find something to drink which I enjoyed – I couldn’t drink tea or coffee, and for a few days after each injection couldn’t drink cold drinks (it’s like swallowing razor blades but you get told this is perfectly normal) I ended up having a bottle of water always on the kitchen bench so it was at room temperature and then adding squash.
Unfortunately, in December I got a really bad infection in my rectum, which was worsened by the chemo so I was in the Freeman for a week – the pain was horrendous until a wonderful McMillan nurse came and sorted me out on the right meds – I discovered that a palliative care nurse is not just for end of life care, but also a specialist in pain management. I will be grateful to that nurse for the rest of my days!! My husband was also able to visit – I was lucky enough to be in a room on my own and the nurses let him stay for ages so once my pain management improved we used to watch TV together like normal!
The oncologist said that it was too much of a risk for me to go back on chemo so I ended my chemo treatment two thirds of the way through, the main treatment for bowel cancer though is surgery and I was reassured that it would be okay. The upside of coming off the chemo was that my appetite came back, and I could eat a normal Christmas Dinner (it was just my husband and me though as I was still very vulnerable)
From January onwards life got relatively back to normal, I was managing my stoma bag okay and eating and drinking fairly normally. I started to feel really quite well.
In April 2021 I was able to get my stoma reversed, this was another week in hospital – again I was in a room on my own and my husband could visit. Really, I feel I’ve been very lucky with him being able to visit all through my treatment. Also, my son who works abroad managed to come home for a few weeks – I hadn’t been able to see him for 18 months!
After the stoma reversal, it takes quite a while for your whole system to get back to normal and I have had to learn to manage this – not overdoing it on the fibre, ensuring I don’t get too constipated or too far the other way (!) I take a pain killer called Gabapentin which seems to help keep my system working properly and therefore keeps the pain in my guts away. I have learnt not to be too proud to take pain relief! I was told by my surgeon that my system will never get ‘back to normal’ again and after 10 months I know that’s true, however it’s really not that far off being normal and I can manage well virtually all of the time.
Three months after my stoma reversal I did a course called ‘Where Now’ at Maggie’s centre next to the Freeman. It was every Friday morning for 6 weeks and covered a variety of things from nutrition, to a psychologist to exercise. This helped me to rid myself of some of the daft thoughts that I was carrying around, such as I must have done something wrong – like eat the wrong food to get bowel cancer.
When I look back now at my cancer journey, yes there were obviously some horrible, scary and painful times and I would be lying if I said the journey has made me a better person. But I have got to know myself better, what I can deal with and what is really important to me. It is true that I also met some wonderful doctors and nurses, whom I will be forever grateful too! I’ve now picked up my life again before I became ill – I’m doing some volunteering, have moved my Mum up to a retirement flat just around the corner and can get on with things almost like it never happened! I don’t really want to be a ‘cancer warrior’ but I do try and let people know about my symptoms prior to diagnosis, as they were really fairly mild, and to encourage people to get checked out quickly if they feel that something is wrong.