Hi Everyone,
My name is Gemma and I've recently been diagnosed with a "rare" stage 3 bowel cancer,
The reason I am writing this today is because I received a letter for my first oncology appointment and I don't know why but the letter hit me like a ton of bricks. my journey has been difficult and very fast in terms of hospital admittance and emergency surgery and I think mentally I have not had the time to adjust or digest everything properly, I find myself sitting here crying every time I look at the letter and its ridiculous but then not so much because this is scary. I have no idea what I am in for and I have no idea if it will even help me in the long term, I have a lot of feelings of regret that I should have gone to the GP sooner (although I was diagnosed incorrectly 3 times over the space of three months and sent for numerous tests that showed nothing apart from a crazy level of inflammation) and guilt, I have a lot of guilt and I tend to blame myself for everything. I feel guilty for bringing this all on to my friends and family and feel like an inconvenience to others.
When I say my journey has been difficult it probably is nothing compared to some people, I started off being told by a GP that I have IBS so over the years I found what I could and could not eat due to random triggering and pain and I managed it well until around 2 years ago when I had the worst flare up that I could imagine but as I was travelling I put it down to that; as time went on my "flare ups" got more frequent and more severe to the point last year I began vomiting as well as all the downstairs issues, around November I couldn't eat anything without a crazy amount of bloating and shooting pain and trapped wind moving on to march this year when I had enough and wanted to see my GP, the GP I seen told me I was constipated although I told her my symptoms and I was able to pass wind and go to the loo and she then told me I didn't look very bloated, she didn't feel my tummy to realise it was rock solid, she prescribed me laxatives that I did not need (not constipated but she knew best) and sent me on my merry way. I was told to take 3 sachets of what she gave and after the first three I felt so sick and uncomfortable that I refused to take anymore, later that night I threw it all up again.
The following day (I am so sorry this is a long story) I rang and spoke to another GP in my practice who told me he wasn't satisfied that I had IBS based on my diagnosis 10 years ago but he would give me somethings to try for IBS and an alternative laxative...(still pooping as normal, still prescribed them) after a few days of nothing helping I phoned again and a GP asked me to come in to see her, this GP felt my tummy and said it was very bloated and felt very firm around my bowel area she felt that I possibly had celiac disease and not IBS so I was sent for bloods and required to give three stool samples for other tests and was assured she didn't expect it to be bowel cancer as I am young she gave me tablets for nausea and told me to book a follow up appointment....when I returned to her two weeks later still sick, still vomiting everywhere, she changed the tablets I was taking to a stronger version for nausea and told me my inflammation markers were at 1180 when a normal person normally sits around 50, she referred me to have a scope and put me on emergency list and gave me a week off work on sick.
I never got my scope, I fainted getting out of the bath at the end of the week and ended up taking an additional day off work, the day I returned to work I had to sit as soon as I walked in (I work on my feet so I was useless) I sat for an hour before deciding I was going home and going to A&E, I went to the hospital and I got a full MOT as I had been a month previously but was sent home as they didn't know what was wrong. this doctor sent me for x-ray and discovered I had a distended colon, I was admitted because I refused to go home to a corridor bed and lived on that for two days and waited on a CT scan 2 days later. I went for my CT and half an hour later after I was back on the ward and I was back in bed I had a doctor come and tell me there was a mass at the join of my small bowel and colon and that I needed surgery but good news is I had a room now..I went for emergency surgery the next morning and I woke up in ICU where I was told when I arrived after surgery I was on a machine to help be breathe because my organs had started to break themselves down as there was nothing to burn for energy, I also had ketosis and I wasn't making insulin anymore so I was on drips and machines for that as well this was all due to my constant vomiting they pumped 5ltrs of waste from my stomach and that was what was making me sick and nauseated (I have lost close to 4 stone in weight as a result told if I went on longer and did not attend A&E I would have died within a small amount of time) and it was there because I was blocked by my tumour but now here I am writing all this because the mass/tumour came back as stage 3 cancer, they did a bowel resection and cut it all out, took my appendix and some lymph nodes as they caught cancer on the move, They told me it is a Neuroendocrine tumour and that is on the rare side as where I live they only have a handful diagnosed each year.
Since all of this I had a MRI scan for my liver as they were worried it had spread and I had a full body scan with spec for my liver with another CT at the end of that, luckily it has not spread to my liver and I had my chest CT yesterday so fingers crossed its ok however my consultant said the full body scan did not find hotspots on my chest so it should come back normal. this whole process has been stressing me to my limits and the constant travelling to 4 different hospitals so far because they want me seen quickly and my local hospital wait time is crazy has been tough especially when I feel like crap because of my incision site.
Now that I write all this its actually mental and draining, I honestly don't know how to cope with it all sometimes and because oncology contacted me I fell so lost as I don't know what happens next its the fear of the unknown. I feel alone as there is no one I know in my life who has ever dealt with something like this and I have the constant thoughts of I'm only 32 I still have so much to give, I'm sorry for this massive post but sometimes I find it better to let it all out than keep it all in informationwise.
thanks to anyone who reads all of this and thanks for giving me a place to spill everything eating me up.
