Newbie here and struggling

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Hello all,

I am really struggling with my diagnosis. I am so angry, so scared and just feel like it can't be happening, that I just can't cope. I usually face things head on, I'm usually the calm and practical one in a crisis, the one who sorts everything out. But not with this, and I don't know if this is a "normal" reaction, or as a result of how my diagnosis happened - and I wonder about that because it's six weeks later, and I'm still struggling to come to terms with the way I found out, to the extent that I’ve had nightmares about it.

After having 3 bouts of constipation,  diarrhoea,  sickness and severe stomach pain, over a 3 week period, I ended up in A&E. I initially thought that it was IBS, which I occasionally experienced, part of the acute fibromyalgis that I've had for about 13 years.

After about 15 hours in A&E, I saw firstly a medical, then a surgical doctor. They suggested that I had an ulcer, a bowel blockage or diverticulitis,  and sent me for a CT scan. Several hours later, still in A&E, having had no sleep, told not to eat or take my fibro pain meds, I ended up in tears and asking that someone please tell me what was going on. 

A doctor took myself and my daughter into a side room, and while his pager beeped, he tried to gently tell me that I have cancer, a tumor in my colon that was causing a blockage.  He tried to reassure me I'd be fine,that I'd need surgery but would be OK, it was early stages - and then we were back in A&E, shell-shocked and surrounded by people bleeding, in pain, throwing up. We were unable to talk, my daughter was in bits, offered no privacy or support,  and no one came near us.  After 44 hours in A&E, no food, not allowed the pain meds for my fibro, no sleep and after I finally kicked up a fuss, they found me a bed. 

The next day, my surgery was scheduled for the morning ...but after the hospital lost two blood tests, I missed the surgery slots and was wheeled down at around 7pm at night. I remember being told that because of where the tumor was it couldn't be keyhole surgery. And that there was a very small chance I'd have a temporary stoma.  I woke up to find I had an illeostomy, that there were some cells in my bowel wall and that I'd need chemo.

I feel like I've been living a nightmare since.  I hate the illeostomy, there are so many issues with it. I hate that I have to wait to find out exactly when the chemo will start, what form it will take, for how long? I don't know what the results of the biopsy are, if I'm going to get good news or bad. The appointment with the oncologist is over 3 weeks away - they said I would have to heal fully from the surgery before there was any point in seeing him or her - and I feel like I know nothing and have no idea what to expect, and it scares me. My kids are so worried, my daughter is so obviously traumatised by the whole A&E experience and I have no idea how to reassure them and try to make this easier for them.

Is this how everyone feels, and how do I get my head straight and start to accept and deal with this, so I can support my kids? They are both adults, but it's hit them hard, and I feel so helpless.

  • You must indeed be feeling completely overwhelmed by the process. Finding out in the way that you did must have been hard, particularly spending that time in A&E. My advice to you is to now trust the process: your cancer has been found and it is now just a question of time before the cancer team get you treated. You are in good hands.

  • 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.

    I’m Anne, one of the Community Champions here on the Online Community, and although I've had different cancer diagnoses to you I know how scared you're probably feeling right now.

    The online community is divided into different support groups so I'm going to recommend that you join the bowel cancer and ileostomy, colostomy and stoma support groups as you'll then connect directly with others who have the same type of cancer as you and have also got an ileostomy.

    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'.

    It would be great if you could put something about your diagnosis and treatment 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"