A thread for those supporting relatives with life limiting diseases.

[CharleyDavidson]

I know a lot of people come onto here because they are suffering themselves but I wondered if there would be a use for a thread for those who are supporting those who are suffering. Being strong for someone else is HARD and this could be a place to discuss the things that we are up against.

My own dad has a prognosis of a few months for a cancer diagnosis and it's just awful to see how ill he is and how sad he is about things. :(

Fuzzy I normally dont post just lurk. My DH finished his treatment for a rare leukaemia last year this time. He didnt need transplant then but thats the only option if it rears its ugly head again. Since then I have met few who have gone through the transplant process and know how scary it is for their partners with not much support out there. I am here if you need to chat.

Thanks luv.
I'm finding there's not much support for partners anywhere (although Macmillan's phone line have been good) It's such a hard journey and I am as emotionally invested in it just as much as my DH, even if it is he who has to go through al the physical nastiness.
Transplant is the only option for DH's condition - there's no chemo for example that can help.

I know its hard holding up a brave front all the time. The constant whatifs running through your head especially at 4am is not something you can share with people around you. Crying uncontrollably in the car when some idiot blocks your right of way and all you want to do is scream at people who say to you- how brave you are. I hated being around people when my DH was in hospital for 40 days fighting sepsis and loads of other infections as their constant questions would make me confront my worst fears. I had somebody tell me I looked good for someone going through a hard time at home just because I put some makeup on so my DH could belive everything was under control at home! Lurking and reading posts here gave me the strength to KOKO. Posters here have loads of good advice and understand. for you

Meant to ask if DP has found a donor. Waiting is the hardest.

Yes, he has a sibling donor, which is good news. The condition he has doesn't respond very well to treatments though (even SCT) so our sense of hope and future are very restricted. We have our prelim visit to the transplant unit soon and they hope to get him in soon after that (except they are very busy). You're right, waiting is very stressful.

Take everyday as it comes. I kept telling myself,if my DH had a stroke from how close he came to brain haemorrhage, things would be harder. I was/am angry and thankful in equal measures. The best advice I ever got was from my DH- dont think, dont resist just go with the flow, act when action is required otherwise conserve your emotion. Dont let your imagination run wild, reality will be far removed from it. Keep a diary of any queries you have about the procedure and take it to the appointment. Things wont always be this unclear

You are right, absolutely right. But it is hard not to read the statistics and weep. And try to imagine how I would get on if my DH was no longer here. And there seems to be so little emotional support...plenty of medical stuff happens but there are so many long and lonely hours when both of us just think.

Weeping is,in a strange way, cathartic. Its doesnt weaken you but relieves stress and makes your resolve to support your partner stronger. You can mourn not being able to plan into the future but that doesnt mean you are mourning for your other half. He is still here and is lucky to have you and you to have him.

Thank you. I am so scared. He is so scared. There's no escaping it.

I have no words to comfort you for your fears are genuine. Sending you unmumsnetty hugs. Keep posting if it gets too much and I will keep you in my thoughts and prayers. How about making a list of music, audio books or podcast for when your DH starts the transplant process. He might not be upto it initially but will be handy for when things start looking up and on the actual day of transplant. Boxsets, movies downloaded or books for yourself for when you wait around and there will be plenty of that.

Happily I am an avid reader so no doubt will get through most of the library!

Thank you for the hugs and your kind words. I am so grateful you haven't told me to "keep positive" or "be strong" since neither of those are I n the least bit helpful! Or indeed "have you tried (insert organics product here) - it worked for my (insert name of distant relative here)"

And thank you for continuing to respond to me in this lonely and difficult time. Very few people understand.

Books are brilliant to keep you company. You can pretend to read if you want to be left alone or get lost in the plot. Strangely the book I was reading when my DH finished his treatment is still unfinished. I have since read quite a few but cant finish that one book! I found the hospital oncology clinics had their own book recycling shelf. Everytime we go now for the appointments, I leave a book on the shelf, hoping someone might appreciate it. Look for books there, atleast you dont have to return it by a specific date and wont be charged a late fee

That sounds good. I'll look out for a bookshelf! I find I can escape well into a good book...problem is you come out of it and there's all the crap again!

Hello everyone. Here I am joining the thread no one wants to be on. Team terrified:(

My mum has been diagnosed with stage4 lung cancer and has just started chemotherapy. The last 6 weeks have easily been the most stressful and frightening of my life. I am fortunately local to my mum and have been staying with her as the dc are all grown up now. So my life has really turned up side down. I haven't even made it into work more than a few times but do a lot from home.

Really dread what's to come but mum doesn't want to know prognosis so it some ways it does make it easier to just focus day-to-day.

Hope you're getting on ok fuzzy and luv and thank you for the thread charlie

Hello madroid. You're right, no-one wants to be here...but here we are all the same.

I am so sorry to hear about your mum and how difficult it must be for you too. I know my work has fallen by the wayside a lot (fortunately I have a brilliant and supportive boss) - I've found it so hard to focus on work so instead of a distraction it is a further burden.

Are the medical team keeping you informed (assuming your mum has said this is ok)?

Standing alongside you and hand holding.

So sorry you find yourself here madroid. Dealing with each day as it comes is the only way to keep your sanity. Its hard watching your loved one going through hell and hell it is. Cancer sucks . Its a roller coaster ride you take....lots of highs and lows. The highs might be anything from a shared joke or your DM showing her personality you know so well through all the shit. Enjoy those and relive them when low.
Fuzzy am thinking of you.
for all those who find their way here.

We have a meeting with the transplant team this week. :(

Yes the medical team will talk to me. I've not really had the opportunity to though because always with mum. But I'm pretty clued up on the implications although I can't really bring myself to articulate them.

Thanks for the company and handhold Fuzzy. By god it's a lonely place to be and so frightening. I feel as though I need to be on alert all the time now for any reaction or infections etc. It feels a huge responsibility.

I will be thinking of you this coming week and wish you all the very best for your meeting.

And thank you luv. Good advice to try to note and remember some highs. I keep wanting to take photos but don't want to alarm my DM which it probably wouldn't, but she knows me so well I feel she might guess what my motivation is. Sounds ridiculous written down.

How is your DH now?

I am enormously aware that it is, to some quite large extent, my responsibility to keep my DH alive...as you say, on the alert for infections or injury (in his case) and being the one to do the drive to the hospital.

Lots of things sound ridiculous written down, but they never are, especially at 3am! And they aren't here either, because I understand what you are saying.

to you all. I'm currently supporting a family member through their diagnosis- 3-6 months, elderly and at peace but still hard for all concerned.
Can anyone offer any advice on sending this to a different, not close, friend? She's posted a last memories picture of her and her family and I wanted to pm her this Leonard Cohen quote, 'So come, my friends, be not afraid/ We are so lightly here/ It is in love that we are made/ In love we disappear' it sprang to mind as she really is very loved by all her friends and family.
I'll offer genuine practical help (she's a close neighbour) but is that too... I don't know, real?

A warm welcome to all of you who have found this thread, hope it helps as a place to vent and share. Team Terrified - that's spot on. I remember it well.

Hello Imina and charley
I've been reading academic papers about survival rates today for people with my DH's cancer. I find the generic information very dumbed down and I need more detail about what to expect and what to ask. It's all such hard going. I don't know how I'm going to do this.

And feeling a bit lost too (sorry to be such a miserable git) because I'd love someone to phone me up and ask how I am coping (I know, it's not about me) but there isn't anyone really.

Can I join please?

My DH is currently going through chemo for bowel cancer, and I'm struggling a bit at the moment.

I've read through the last few pages, but my mind isn't focused at the moment, so have difficulty placing who said what (which I'm sure will be understood). to you all on the thread that nobody should be on

Sorry to see you here Silver. Things not registering is very understandable under the circumstances.
Madroid my DH looks normal on the outside but on the inside chemo has taken its toll.Each day is different but I will take this new normal over the alternative.
Iminapickle do send the poem, it's lovely and thoughtful.
Fuzzy when you read medical literature do remember that it's usually few years old. I know its hard 'not knowing'. Once you meet with transplant team and have things in place, you will feel a little less lonely. They will be able to answer or point you in the right direction. Will be thinking of you this week.
Thank you Charley for creating this thread. It gave me strength,knowing there were others who have walked this heart wrenching path and lived to tell the tale.

Luvnewme, to be honest - I started this thread because I needed it. A bit selfish really. But I'm glad it's helped and has helped others as it also supported me.

Fuzzy - I had the overwhelming need to find out all I could about what was going on with DDad. My other sisters didn't have the same approach at all. They couldn't understand why I went looking for all the information I could find and I couldn't understand why they waited for the next symptom or development took them by surprised. I probably upset myself along the way but in the end I think I was more prepared for what was happening. Each to their own coping strategy.

Madroid - take the photos, you'll treasure them later. I have photos of Dad in hospital and of me hand holding his taken in the last couple of days. I also surreptitiously recorded conversations that we all had before he was really, really poorly and I listen to them and get comfort out of them.