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.

I'm so sorry lass.

No wise or useful words. Can only send a handhold and a hug.

When I first found out about my prognosis I felt I ought to be making the most of every moment and "making memories" etc. But actually the pressure was too much and the few times I tried to do any big things it could never live up to the expectations I'd created and I ended up sad and disappointed. Now I'd much rather do something "normal".

I hope you have a wonderful time in your caravan. The main thing is that you're together.

Hi I'm sorry you and your DH are going through this. I was on a similar situation last year before my DH passed away in Feb 17. He had 2 rounds of chemo, a clinical trial and finally lonsurf. He was quite well for most of the time from when he was diagnosed and had little pain, mostly tired from treatment. After the clinical trial failed and before he started on the lonsurf we went on a trip to Paris and DH went on a trip to London in December 16 to visit his brother for a week when he was on the lonsurf . I'm so glad we got to spend that time away as a family and that DH and his brother got to spend that week together too. I'm just saying that he was able to do stuff in his final months . He tolerated the lonsurf pretty well , it just made him a bit tired but at least there was no lengthy period of being in a chemo ward weekly or fortnightly as it was an oral tablet . I hope things go as well as they can for you DH

Thanks Tea and sorry for what you have been going through as well.

He has been on the Lonsurf for a few days now and actually he is feeling less tired than when he started. Also, you are right that he can take the tablets with him rather than being hooked up to a machine. We do plan to have relaxing time while we're in the caravan and now really looking forward to that.

His family, well that's different. They don't really seem to speak to each other much but we have a family event we're going to in the Summer so will catch up then. I must admit I've been wondering what my relationship with them will be when Mr Willowkins is no longer with us.

Was having a chat with some of DH's family and they mentioned how his narc DM used the eulogy at her friend's funeral to talk about herself for 20 minutes. I know hope it's a long way off but there is no way I will let her hijack Mr W's funeral. There I've said it.

Good for you @Willowkins these situations sometimes bring out the worst in people, especially narcs. I've been lurking but wanted to see how you've been getting on. How is mr w?

That's dreadful Willowkins! It's good you know and are prepared. Hopefully the other family will step in and fend her off if needed when the time comes.

Thanks as always for your support. Family have said they will help to keep her in line. She winds people up on a regular basis but I won't have her upsetting the kids.

Mr W has finally gone on sick leave. He wanted to keep working for as long as possible (more normal) but finally had to call it a day as the new chemo was very tiring and new management are not at all supportive.

Sorry to read that his work isn't being supportive. Let's hope they never need help.

I hope all is as well as it can be lass.

Willowkins I’m in the same stage. DH still on treatment, incurable but treatable. He’s so well at the moment, currently drinking whisky and watching tv with his dad having got home from work half an hour ago. Life plods on but it’s all so rubbish. Really happy if you want to PM me, and share stories and experiences

Sorry Money that you're going through this too. It just doesn't seem real because they look so well on the outside.

Update: DH is now on his second treatment with Lonsurf and is doing well apart from being more tired than usual. So that is another month of life and we are enjoying a lazy holiday. Every week is a win. Every day is precious.

Indeed it is OP. How is he coping in this heat?

Hi Diabolical. He hates the heat with a passion. Fortunately it's a bit cooler here by the coast.

Argh I hope he manages to stay comfortable!!

I hope you don't mind but I just wanted to report that DH is on his third lot of Lonsurf treatment. He is tired. We saw the oncology registrar last week as well and the plan is to keep going and there will be a scan in a couple of months. Mr W does not think it is doing him any good and wants to stop taking it but I think: how could you know one way or the other?

Our next milestones are our wedding anniversary and my birthday so just looking forward to those. We have also written a list of everything we need to do in the next 6 months - next is to clear the gutters.
Thanks for listening. I have found I treasure those people who just listen.

Thank you for the update Willow, it’s nice to hear that you both have some things to look forward to. We’re always here, sending you a handhold

It's good to hear that the Lonsurf is doing its job, Willowkins. Here's a to normal every day things .

Just read your thread willowkins.

Really so sorry to read your news, what a bastard cancer is.

I don't know what else to say really, except good luck with the gutters and here's to a wonderful anniversary

Lovely that there are things to look forward to

It is so important to have things to look forward to. I do hope that Mr W can keep positive until the scan and I will have everything crossed for you that the scan results are positive also. Keep on talking and we will all be here listening and supporting as much as we can xx

It is so important to have things to look forward to. I do hope that Mr W can keep positive until the scan and I will have everything crossed for you that the scan results are positive also. Keep on talking and we will all be here listening and supporting as much as we can xx

Thank you again all for your kind thoughts and the support.

I was only going to post once every 4 weeks - a signal of each round of chemo. But tonight I heard that a friend from uni has died from cancer. We only did cards at Christmas so not really close these days but we bonded when we were young and had left home for the first time. We read Cosmo together, she encouraged me when I got my ears pierced, we went to each others' weddings. And now she's gone and she was my age. Cancer is shit .

I'm very sorry to hear about your friend, cancer really is a cruel disease. I've lost my dad to it, my grandad to it, and shortly about to lose my nan to it too. It's awful. Thinking of you, OP.