My husband has been diagnosed with bowel cancer and I am struggling

[Flowberry]

Hi, yesterday my DH was told a mass had been found following a colonoscopy that was very certainly cancer. He is 43. He’s had stomach issues for years, but recently they ramped up, lots of bleeding and weight loss. He had several tests done initially and they were all clear, so we really had to push for further investigation. I’m not coping. We have two small children. I’m seeing my GP later today for help so I don’t fall apart.

people keep telling me that bowel cancer is very treatable, but I’m so sorry that the symptoms he’s had and the way the doctor told us that it’s at an advanced stage.

not sure what I’m looking for, a safe space to speak I suppose, and maybe stories from people who have been in a similar situation.

his grandfather died at around 50 from bowel cancer so am not feeling safe enough to try and feel positive.

I am really sorry for your news and respect that you are not feeling safe enough yet to assume it's all going to go well.

it's great you are going to GP, I would see what support you can get from cancer charities-I have heard they can be very helpful.

you're at a really anxiety provoking point in the process -you have a scary diagnosis but not the full detail or a plan of action yet and will still be shocked so hopefully as the way forward starts to become clearer it will offer a bit of structure and more hope.

im sorry about his granddad and of course the media shows us the worst possible outcomes because there is no news about all the people who get treatment and are able to carry on with life.

Sorry to hear this. I’d feel the same. Your GP is a good place to start. Hoping for a positive outcome for you xxx

I'm so sorry you and your husband are in this place right now.

All I can say is a friend of mine, in her 70's, was diagnosed with bowel cancer months ago. She has undergone treatment and at the moment feels fit, well and due to go on holiday to Spain in a couple of weeks.

Good luck. x

Totally understand that you are feeling terrified op.
I’ve had a cancer diagnosis myself and the uncertainty whilst waiting on staging and a treatment plan can be unbearable.
If it helps I personally know two people who have been successfully treated for bowel cancer in the last couple of years. He’s reasonably young so he’s got that on his side.
But I hate all of this ‘be brave’ shit - feel how you need to feel. It’s ok to acknowledge that you’re scared and better than burying your head in the sand!

I’m so sorry OP. What a huge shock for you, no doubt compounded by the struggle you have both had to get to the point of diagnosis. I hope you are able to feel supported by your GP, and also that a comprehensive management plan for your DH’s cancer is put in place urgently. Waiting for the next thing to happen is agonising, I know. Best wishes to you and your family.

Im so sorry. DP was diagnosed with (a different ) cancer when our son was a little baby.

The Clinical Nurse Specialist and a charity specifically for his type of cancer were brilliant.

Use your village. give people specific practical ways that they can help - they really appreciate it.

Find your safe space -Rant on here if you like. keep your own oxygen mask on.

In the meantime just keep putting one foot in front of the other. there are plenty of things you don't know, noone knows, and you can't control. A cancer diagnosis is a crash course in accepting that.

oh - and you and your DH may find it helpful to give the cancer a name so that you can say out loud when you are angry at it rather than getting angry at each other.

OP, have a look at the Bowel Cancer uk website. Very informative and supportive.

I’m very sorry OP. Just a thought but does your DH have critical illness cover? If so he should be able to claim with a bowel cancer diagnosis. whilst I appreciate that money won’t change things, it may mean that you can take time off work to support him.

I'm so sorry to hear this. As others have said, this period of limbo between getting the diagnosis and having a definite treatment plan worked out is possible the worst bit of the roller coaster journey that is cancer treatment.

I was diagnosed with bowel cancer just over two years ago, although I'm a couple of decades older than your husband (in my sixties) and didn't have any symptoms.

I did a routine bowel screening test which indicated that further investigation was needed, and it was obvious (even to me) during the subsequent colonscopy that there was a large tumour. The lovely lady doing the colonoscopy took biopsies and tattooed the bowel either side of the tumour to help the surgeon, and like your husband I was told immediately afterwards that although the biopsy would be needed to confirm it they were 99% sure it was cancer.

I was given a CT scan the following day and within six weeks had surgery (a left hemicolonoscopy with resection - where they remove the part of the bowel with the tumour and then rejoin the two ends). It took a while to recover from the op and my bowels will never quite be the same again, but I've just had my two year follow up appointment and all is well.

Don't google, but for accurate and helpful information I recommend both the bowelcancer uk and Macmillan websites
Bowel Cancer | Bowel Cancer UK
Macmillan Cancer Support | The UK's leading cancer care charity

• check out the online communities to chat with others in a similar situation to you and your husband

Have a handhold from me - keep us updated with how you are both doing and if you have any questions for someone who has been there and got through it , just ask.

how are you doing @Flowberry

My late OH had bowel cancer - don't panic when you read that, he died years later of something else still 100% cancer free (he had a screening just a couple of months before).

He was told immediately after the colonoscopy, as soon as the sedative had worn off. A couple of weeks later he had surgery to have roughly 18 inches of bowel removed. They also removed a small section of his bladder as it had started to spread.

They found cells in his lymph nodes so he had 4 rounds of chemo. A transfusion followed by 2 weeks of daily tablets, and then a week off, so 3 months total.

Then chemo wasn't as bad as we thought it would be. There was no vomiting and he kept his hair. He felt cold a lot, had painful tingles in his fingers, and had a bad metallic taste in his mouth a lot. But it was all stuff we could deal with. Hand warmers, fruit sweets, an oodie etc.

Hopefully it's a similar story for your OH. Once I'd learned his was spreading I really thought it was over but he came through it.

Everyone, thank you so much for your kind replies, and support. I feel like I’m living in a whole other world at the moment.

we spoke to the support nurse yesterday and have a CT booked in for next Friday. They also confirmed it is a rectal tumour rather than in the bowel. I’m not sure if this makes a difference to the likely outcomes or not

My colleague had symptoms similar to your husband. He was 40 at the time.
He ignored his symptoms for a while until the cramping, bleeding got worse.
Anyway he was told he had cancer required surgery to remove the cancer and some sessions of Chemo. Since has fully recovered.
It was his birthday yesterday He was 56. He has regular check ups every 2 years or so and all good.

it does feel like that - surreal, nightmarish. Are you sleeping? if not don't be afraid to ask GP for something to help - you need your energy!

Hi @Flowberry, Just chiecking in on you - is it today that your DH has his CT scan ? Wishing you well with it all

Hi @P00hsticks thank you do much for remembering and thinking of us. Yes MRI and CT scan this morning, then a call just after to say we would have an appointment at the hospital on 28th (apparently this was arranged before the scans this morning). I’m just not sure we can handle that wait. 😔

we were due to go on holiday next weekend for a week and my husband still wants to go, but I don’t feel like going with it all hanging over us.

And thank you everyone who has replied and your support and kind words of encouragement.

I’m sorry to hear your news. Once there is a plan, you’ll feel a bit more in control. I’d be inclined to go on the break even if your heart isn’t in it. You’ll be together, away from it all and it might be the slight distraction you need. Plus, if treatment starts quickly, it might be a while before you can get away together again.

Apply for attendance allowance immediately and carers allowance if applicable. Join macmillan website. Good luck x

We were in this situation 3 years ago and my heart goes out to you both. We mentioned the holiday at the colonoscopy where the cancer was identified and the surgeon advised us to go as nothing would be held up or significantly delayed. He had the scans soon after the colonoscopy and the results meeting the day before we were due to depart. I know it is hard but I would definitely go in your shoes. Good luck xx

I’m so sorry. I think if your DH wants to go ahead with the holiday you should try to do it.

My close friend is going through the same process with her DH. They have been on quite a few holidays working around his chemo and surgery/recovery.

💐💐💐

DH is only 43 so Attendance Allowance is not appropriate.

DH should be given contact details for a team of CNS's (Cancer Nurse Specialists) who should be able to advise on benefits or point in the right direction, but without a treatment plan as yet it won't be possible to say how much DH may be incapacitated and for how long.

My particular case of bowel cancer was treated by surgery and if I'd still been in a desk job could probably have returned to work within a month - obviously if you are doing hard manual labour it would be longer.

@Flowberry, I agree with others to go on your holiday while you have the chance and try to enjoy it (difficult I know with this hanging over you).

Things will be going on in the background until the 28th - the results of any biopsies, MRI & CT scans will be considered by a MDT (Multi-disciplinary team) who usually meet weekly, and they will agree the best course of treatment for DH, which I'm sure they'll explain to you at the appointment. Are you going to be able to attend with him ?

My father was diagnosed with rectal cancer when he was eighty. He had five doses of radiotherapy then his rectum was removed. He had a permanent stoma which is a strong possibility with rectal cancer but coped with this well and lived until he was ninety-four.