The calm before the storm

[Willowkins]

I previously posted under the title: I'm not OK - about my lovely DH with stage 4 bowel cancer.

We heard a few weeks ago that DH has refractory disease - basically the chemo is not working. We see the oncologist this week for the results of the latest MRI and hopefully a new plan but it's not looking good.

I am sitting here in the sunshine and the birds are singing but I know we have dark days ahead. I'm trying to stay strong for the family.

Just needed to share with you good folks as can't really talk about this in RL.

Please do share whatever you want to OP. There are people listening. Rant and rave, scream and shout. Whatever helps. It will be a tough time for you but there is lots of support available.

Do you have any support for you? You don't have to stay strong all the time.

I hope you found some comfort in the sunshine and the birds. I always find that it helps to just sit and take in the beauty.

I hope that this week's appointment goes as well as it can

sorry that sounded rather wanky like a bit of time in nature will fix everything. I didn't mean it insensitively. I have stage IV bowel cancer myself so I do understand a bit of what you're feeling. But I do genuinely find that sitting in the sunshine makes it all feel a bit easier.

Thank you for your replies and I am so sorry for the situations you find yourself in. I really want to swear and I hardly ever do. Had a little cry in church this morning but managed to keep it to myself. Now it's just this awful waiting. I think I'm going to ask how long we've got at the meeting with the oncologist.

Swear away if it will help. You're in one of the hardest situations imaginable. The waiting is awful

How did your appointment with the oncologist go?

Sorry I didn't get back to you but we're still waiting to hear whether drug trials are an option. The fallback position is a drug called Lonsurf. I looked this up and it says that for people with a life expectancy of 8 months it adds another 3. This ties in with what the oncologist said when I asked how much time we'd got. He said months, maybe a year.

Meanwhile DH is very well in himself and trying to live as normal a life as possible. We are planning to tell the kids when our oldest finishes his GCSEs.

Thanks for listening.

Oh no there's no need to apologise and please don't feel you must update. I just wondered how you were.

I hope that there is a suitable trial available for him

Actually it's good to get my thoughts down here. I do have support in RL but sometimes find it hard to talk about this.

The latest is that there are no drug trials on offer so (and we're still getting our heads round this) my incredibly brave DH has less than a year to live. It's so weird to be grieving while he's still alive.

We will tell the DCs at the weekend.

I'm really sorry to hear that Willow. Life is utterly shit sometimes

Update - we told the DCs. They're each dealing with it with it in their own teenage ways. We have emphasised that we are there for them if they need to talk.

I've been trying to process all this myself and at the moment I am stuck on the amount of time we have left.

That must have been incredibly difficult

Do you have any support from your local hospice? They often have counselling available, including for families, or can put you in touch with specialist organisations, if that's something that might help.

Thanks Leslie. We have support from the SEN at one of the schools and they have been incredibly helpful. The DCs are both amazing, kind, funny, warm, helpful teens and I sometimes think they are trying to be calm for DH and I. I'll keep working on it, mainly just give them space to express their feelings if they want to and make sure they know it's okay.

Very sorry to hear that you and your DCs are going through this x

Thanks Frazzled. I know I am not the first person to go through this or the last sadly.

I have booked an appointment with the GP for next Friday to get some more help with the anxiety. I was on Escitalopram but that stopped me feeling anything. There has to be something that can help me relax without making me fuzzy headed.

I've decided the countdown should be from our last consult with the oncologist so that means we now have 10-11 months left. I know that is completely meaningless but I needed to get past it somehow.

I have nothing to add but huge sympathy. My DH had a cancer diagnosis this year, although the prognosis is positive, so I have a small idea of what you're going through. Just sending my very best wishes, hugs and by the truck load.

I hope that now exams are out of the way (how meaningless they must seem at a time like this), I hope that you, your DH and DC are able to have some special time together, making memories.

So sorry - don't know what to say, especially as nothing can make it better.

So sorry to hear that Mrs Expo. Even if you have a good prognosis, it still comes as a huge shock. Hope all goes well for you and your DH.

Huge love

Thanks aj. DH just wants to 'be normal' but if it was me, I'd want us all to have an amazing last year together. For instance, DH would love to see Italy and I would happily get him and the DCs there one way or another but we've booked a caravan an hour's drive away instead because that's all he thinks he can handle. Ultimately, I have to respect his wishes.

Thanks bubbles and everyone. This is really helping me to just get these thoughts and feelings out there.

Hi OP.

Firstly, can I say how very sorry I am that you find yourself in this position. It must be incredibly hard for you all.

Secondly, I am in the same position as your DH. In early December 2017 I was given 12 months. I've now had 7 of those months but actually am no worse than I was at Christmas. So don't take the 'less than a year' as gospel and try not put him in his coffin just yet! I know the future is very bleak for you but he may well live longer than you have been told.

And lastly, I crave normality too. There is no way I want to go off travelling anywhere or completing some random bucket list. I need to be here, at home, with my DCs (no partner) and carry on as normal for as long as possible. You cannot say what you do in the same circumstances - you have no idea - so you are right in saying that you must respect your DH's wishes.

Thanks Fuckoffcancer. Firstly, love your name. Secondly for you. So sorry you've had this news and I hope you stay well for as long as possible.

DH still well in himself although tired. Since the first round of treatment and surgery to have the main tumour cut out, he has had no pain and was still working up until last week.

Thanks also for the reassurance on the normality. If I can give him a clean, tidy house he'd be happy (and he'd wonder what I'd done with the real Willowkins ).

Memories don't have to be bucket list type adventures. Picnics, walks, theatre trips. Anything that will remind you of the love you share.