Still the storm

[Willowkins]

Continuing the support thread - mostly for the partners of people living with terminal cancer - www.mumsnet.com/Talk/life_limiting_illness/3266385-The-calm-before-the-storm?pg=10

Oh @MontyDonsBlueScarf, I'm so sorry. You're not alone. That list of jobs can wait.

I’m so sorry. The jobs can wait. Start with the cup of tea.

@MontyDonsBlueScarf I’m so sorry for your loss

@MontyDonsBlueScarf so sorry for your loss - make sure you take care of you. X

@MontyDonsBlueScarf I am so sorry, those jobs will get done but for now look after you

So sorry to hear this news@MontyDonsBlueScarf hope you are ok x

@MontyDonsBlueScarf
Im so sorry for your loss, the lists can wait, tea first.

Is it ok if I join you?
DH has incurable head & neck cancer which has spread. Thanks to him being obstinate about going to the GP & the GP refusing to see him it was quite advanced by the time it was found. Radiotherapy helped a lot with the symptoms & we were initially told is had cleared the cancer but it hasn't.
Just here for the company really, it seems like quite a lonely journey.
I've name changed for this.

I'm so sorry to her that @Radiohorror. It is a very hard and lonely road. I'm replying so you feel less alone - I'm sure others who are currently going through this will get here soon.

My DH died (of lymphoma that spread to the brain) in Sep 2020. (I'm more active further back in these threads). We too thought that the initial cancer had been cured - he started getting the brain symptoms a week after the all clear. Awful though it was to be told that nothing could be done (during early days of covid, so that really complicated everything), we did manage to have a good and calm six months as a family before things got difficult. We found that stopping with all of the tests and waiting for results and horrendous treatment gave us time to live in the moment and we had about six months which were actually pretty good.

I hope that it works that way for you too. I'm very happy to talk via PM if you want to talk about anything.

Thinking of you both and your family.

It is a lonely road, but there is comfort and understanding to be had on this thread. Thinking of you both @Radiohorror

Thank you, yes we are trying to live life to the full at the moment. DH is quite well for now but we know that could change rapidly. He's not scared of dying but he's scared of the cancer progressing, if you see what I mean. The symptoms were so awful just before he started treatment but at least then there was hope that it could get better, and it did, but this time there is nothing to offer him, and if it progresses in the same way he will be desperate. He talked about taking his own life last time.

Have they assigned you a nurse @Radiohorror? We had a wonderful visiting nurse who was a point of contact for lots of medical things. I'm now not sure if she was there as part of hospice at home (though she visited long before hospice became an issue) or the district nurse team. But she was amazing and so supportive. She connected things up for us, and helped us apply for all of the medical and social services support we could get. She was really helpful in giving a steer about the progression of the illness and what we could expect when. Definitely worth asking what is available.

The other thing we did as soon as possible was set up powers of attorney and update wills. DH made sure I had access to all of his log-ins and passwords in one place. That made such a difference down the line, and once it was done we didn't need to think about it any more.

Yes, we have a MacMillan nurse & DH is being very organised with finances, passwords etc. We already have POA & wills. The doctor said today that they will send in a form that allows us to claim some benefits (PIP?) on fast track.

Your Mcmillan nurse will help you complete the form. I seem to remember ours submitted DH's and on our bit we just had to write something like 'claimed under special rules, see form completed by (nurse's name)'

Yes, ours must have been Macmillan as well - and she also helped with the claim forms and got things fast tracked.

It's so scary and horrible and unfair. This thread was a lifeline for me to be able to rant to people who get it.

Hi @Radiohorror , we’ve just been given the few weeks to short months talk from our oncologist, and referred out to hospice and off his service as DH no longer being treated for his cancer, just pain stuff now.

Im here, just odd hours as we are in NZ. I’ve been dreading the worsening of symptoms and managing DHs decline. He has a nephrostomy bag now which requires quite a bit of managing. Hospice are doing a home visit today and I’m hoping they will get us a proper hospital bed as that will make things easier I think.

sending you shoulder bumps in solidarity xxxx

@SchrodingersKitty , and @bloodywhitecat lovely to see you pop up xxx

Lovely to see you too @Frikonastick - and @bloodywhitecat. I'm so sorry you're hitting the hardest stage, Frik. Practical things like the hospital bed definitely make it a bit easier.

Oh @Frikonastick I am so sorry, a profiling bed and an air mattress definitely makes things easier. We're going to need a new thread soon as this one is almost full.

@Radiohorror ((hugs)) it's a horrible path and unless you're on it or travelled it it's hard to get it !

@Frikonastick (more hugs) hope you get some peace and make the most of what time you have x

Hey you supportive people you. How are you doing?
I've started another thread so it's ready if this one runs out.

In case the link doesn't work:
www.mumsnet.com/talk/life_limiting_illness/4729740-the-storm-part-3