MY STORY (experience)

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  • my experience with the process of finding out what was wrong with me and to finally be diagnosed.

My experience started late last yesterday in october/november But was suffering badly throughout the year from the start of summer end of Spring and had no idea what was wrong with me.i then had my diagnosis juggled 3 or 4 times throughout the summer from different professionals as to what it was i had wrong with me , I was misdiagnosed 3/4 times before they finally came to a decision that I needed to be tested for bowel cancer

The diagnosis and how I took it mentally.

so I had the screenings and tests done and awaited to hear back from them,come the night of the terrance Higgins Trust charity 2022 event I was told to come in and speak to the consultant/specialist which said to me I had stage 3 colorectal bowel cancer the whole world then from that day hasn't been the same to me My partner tells me that I've lost my spark And have no fight left in me or just don't want to fight anymore and tells me that ive given up I have days where I find it easy to move about and go about my day like normal and days where I can't do anything myself and am in bed alot of the time I lost all capability of being able to go to the toilet like a normal person as i no longer actually know when i i am going to the toilet or bleeding or am just leaking mucusy discharge , its difficult to express what it's like for people with cancer as  its unseen by the majority of the population, but is the life for millions of us daily what comes across as maybe being distant or selfish to some might be seen as having time to yourself or to be taking that time to just focus on your health to others I get people say quite alot that I only think about myself now and that ive become distant and selfish when all ive ever done is put people and their lives before my own almost distracting me from dealing with the issues I had at hand. in result it opened my eyes as to who I actually had as friends in my life as I lost a majority of the friends I did have and as a gay young man the majority of my friends I did have obviously were only interested in one thing but because that one thing they wanted no longer was possible to happen they either blocked me or unfriended me which made me realise who I actually had as true friends which I can say now I count 4 friends I can say I have that support and understand what I'm going through and don't judge or treat me any differently for.

worrys & thoughts ive had.

one worry I had throughout my whole experienc was that I was going to visit friends and would go to their homes and would be bleeding really badly from my bum and would layer my pants with tissue to start with in early days just to hide the fact until one evening I was at a friend's and they told me to sit on their rug as they had just vaxxed the sofa so jokingly said yeah only if you let me sit on your white Persian carpet ontop of a bin liner inwhich he responded with what why would you do that and I said almost ashamed of it even though its something completely out of my control said ive been bleeding really badly from my bum and I didn't want to ruin your rug and they said well in that case yes I suppose you better. After that evening with that particular experience I never heard from that friend again.

when it came to resting my head at night I found it almost Impossible as I was never able to get comfortable and was finding myself putting my body in strange positions just to try get comfortable going from bed ,to floor ,to chair , to sofa.on and off for three to four hours on a daily basis every evening and even when I got some what comfortable I was then in too much discomfort and pain to actually sleep and I think part of me didn't want to sleep in the first few months as I was scared I wouldn't wake up again and would die in my sleep but after a while I got into the routine of being able to sleep when I was so tiered I would just pass out from exhaustion which solved the problem of being in discomfort and pain as I don't believe in taking any kind of sleeping aid and am not taking pain relief as its something I am strongly against and have been my whole life I am however taking medicinal Rashi/ Shitaki supplements which are a natural inflammatory and help fight against cancerous cells. 

  • my experience when it came to opening up and telling family and close friends I had cancer.

When I decided to start telling people I mean the people that are closest to me that I was ill I started with my partner and then I called my mum.her inital reaction was unexpected and understandable to any parent she was in denial but eventually came around and put a brave face on although it was very difficult for her to hide that it was affecting her alot as she told me later on down the line that I out of 4 siblings was the favourite and that she wouldn't know how to cope If she were to lose me. that there and then made me realise that I didn't want her to see me deteriorate and get worse and worse when she had so much going on in her own life already.

to finalise everything ive opened up and said about regarding my experiences and thoughts 

it seems to all come back to the fact that we misread situations and people so much instead of just communicating clearly with one another people jump to make assumptions and judge which leads to people getting into arguments and making stress that is certainly not needed due to stress and blood pressure levels being so high ive currently had 3 TIAs in the last 6 months (minor strokes)

current prognosis/diagnosis

as of Christmas I progressed into stage 4 and was no longer able to have a a colostomy bag due to it not being done earlier on in the diagnosis as they made me wait a month for the surgery to then turn around on the date of and say that they weren't prepared to do it as it was more than likely to far gone for it to have an effect in which I responded rather angrily and said if you hadn't made me wait a month it wouldn't be this bad ! I later apologised as its not their fault fully.

I'll do more posts if people want to give advice or their opinions on anything ive posted they are more than welcome and I welcome any types of advice and take constructive criticism well I just wanted to get my experience out there so that people are aware that their are people that think we are the stereotypical terminally ill cancer patient thats too sick to have a life and has to stay indoors and categories us and makes us feel alienated and not normal which is the last thing someone thats experiencing something like this needs to feel like.

  • Hi  and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.

    It sounds like you've been through a great deal so thanks very much for taking the time to share your experiences.

    As the online community is divided up into different support groups I'm going to recommend that you join the bowel cancer group as I'm sure the other members of that group will benefit from reading about your experiences.

    To join just click on the link I've created and, once you've joined, you can start a new post in the same way as you did here and join in with existing conversations by clicking on 'reply'. Obviously, to save you typing this all out again you can simply copy and paste it into your new post in the bowel cancer group.

    It would be great if you could pop something about your diagnosis and treatment so far into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

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     "Never regret a day in your life, good days give you happiness, bad days give you experience"