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. :(

Oh No ENorma - I hope you all find some peace and rest

DMIL has declined further treatment so is palliative care only, is currently a bit repeaty but fine and managed to have her holiday which is the main thing, but I don't think she's going to see out Christmas :(

Hope everyone else OK

Oh Eve, sorry I didn't see your post.

What a terrible shock for you all. DMIL didn't accept her diagnosis either, but the staff at hospital and Macmillan have been ace at getting her to, to the extent she has actively declined radio as it would have minimal benefit but would 'eat into' her well time.

have you been assigned any specialist nurses yet? Your DM can give consent for them to share info with you if it helps?

Thank you, she got home from hospital on Thursday and is no at home, the care team are fantastic and she's happy to be home.

Sleeping a lot of the time now, I think we only have a week or 2 left as she going downhill fast.

...5 weeks ago she was fine.

Hello all
Can I join you? My dad was diagnosed with terminal cancer in January. He didn't want to know the prognosis at the time, but things seem to be progressing much faster than we initially expected. Two to three months ago he was getting on pretty well... He's now much worse, v sleepy and consultant has said it'll be a 'few months '.

Just wondering if any of you have any advice on how to make this time the best it can be for him? I suppose I mean, emotionally, and as a family. He's a very strong person, doesn't show emotions much, and is determined to finish some of his projects he's working on.
I live about 100 miles away and plan to go there every weekend I can (my mum is around and very supportive too).

Welcome to those who have found their way to this group.

Sorry to read your news Norma.

Camembertie - I'm so glad your MIL got her holiday. I had the same feeling, that we wouldn't see Christmas with Dad still here. So I made him his favourite Christmas cake, but as a birthday cake for him. I hope you get your Christmas with her.

Eve - bowel obstruction can relapse and remit and Dad found that he had trouble there for a good few weeks before it became completely blocked. There can be surgeries, but if the person is already weak and the obstruction will continue to grow (or is in different parts of the bowel already) then it is pointless as it won't help them, but will put them through a needless procedure and pain. It's very hard to accept though. I still approach medicine with the idea that there's always something they can try. But sometimes there just isn't.

Lionheart - My Dad got a lot of peace out of finishing jobs and getting things sorted for Mum. We helped as much as possible. We also thought a lot about things that he enjoyed and tried to fit some in around all the hospital appointments he had. So we went out for dinner, somewhere he could manage comfortably. And sat by the river etc. Little things.

Hello,
May I join in? My DH has recently been diagnosed with a probable blood cancer. We are awaiting final diagnosis. (Don't want to be too specific for fear of outing self).
Scared, tired, sad....

Anyone? Please?

Hi Fuzzy , really sorry to hear your news and sorry no one else has been along with some words of comfort yet. I am not really a big poster on this thread but I do have a loved one with cancer so I lurk from time to time.

You are allowed to be scared and tired and sad and everything else. It's a horrible time. In some ways initial diagnosis can be one of the hardest part of it all. People generally feel better when there is a treatment plan in place.

Although it's easy to say, try not to worry about the future too much, just concentrate on today each day.

to you

Thank you 1234. I really appreciate your words. We were at hospital a long time yesterday and I am just so tired and know we have a very long and difficult road ahead.
to you as well.

I hope you manage to get some rest over the weekend. Do you have DC? Either way, I hope you can build in some happy times too despite the challenges.

Look after yourself...you're right it is a long and difficult road and you need to conserve energy when you can and think about your own needs aswell so that you're in the best position to support your DH.

We have grown up children between us. My eldest DD made us dinner last night which was lovely and exactly the sort of thing that really helps.

I am trying very hard to look after myself but with long journeys to hospital at least weekly, and the remains of ME it is hard going. However, we did manage to get to the beach yesterday, the sun shone and it was lovely. Dh even managed to float around in the sea pool which is very therapeutic.

Fuzzy - last year my dh was diagnosed with non Hodgkin's lyphoma. I have a thread on here that you may want to read if it helps at all.

I remember only too well the shock, the disbelief, the worry and the pain of it all. The wondering how on earth you will get through the treatments, hospital visits and bad days as well as all the 'normal' stuff we have to deal with. But you will, you just will. Ask everyone for help when you need it, accept all offers. People will want to help you. You're allowed to feel heartbroken and sad, I still do at times even though dh was told he was in remission back in March. He's recently turned 39 and this time last year I was worrying whether he would see Christmas or not. I'm having a bit of a cry this evening about it all, every now and again it still hits me like a brick wall and for a second it's like I can't breathe. I look at our children (primary school and nursery age) and I feel so desperately sad that he might be taken from them. The pain is enormous isn't it.

Some days were so so sad but some days we would still laugh and joke, just like ppl on here said we would and I never believed them at the time but we did. I'm rambling a bit now, apologies. I just want to say there is help and support and I promise you are not alone. I didn't have family support so it felt very hard sometimes, dh was in hospital for a week for treatment every couple of weeks (1 week hosp then 2 weeks home X 6) and those winter evenings by myself were tough, and the wakings up in the small hours most nights with mind racing were horrible but people on here were nothing short of amazing to me.

It's the worst situation but you will find a way through it. I wish I could make it all better for you. I'm sorry you and your dh and your family are going through this.

*lymphoma! Too emotional to spell it seems.

I agree with what 1234 says about feeling somewhat more settled when a treatment plan is in place, I absolutely hated the beginning where nothing was 'sorted' and how up in the air it all felt. Once dh had a treatment plan we had dates and schedules etc to work to and that did help to feel less manic about it all, also it was a comfort (if that's the right word) that he was then having the treatment/being looked after etc. We had a plan to follow and this helped me very much. I found it very hard again once treatment ended because that routine we'd had for months then had to change again and that threw things back up in the air for me but 6 months on we are 'back to normal' somewhat, but it's obviously a new normal now. Dh has a check up next week and I think that's why I'm so upset this evening, it's all brought to the fore again. Keep posting whenever you need to, or you can start your own thread if you prefer as I did.

Fuzzy my DH had had non Hodgkin's lymphoma. Stage 4. Was a horrible stressful time. But 10 years on and he's here and fine. The worse bits were the diagnosis,\ tests ( I would echo what has been said re things being much better once a treatment plan in place) and when the treatment ended. We expected to feel a great sigh of relief but we didn't. We sort of felt a little lost once we were cast out from hospital and worried as to whether it would reappear. (Sounds like I am copying Guy Martin here but truly felt the same way).

I also found it hard to support my DH and be positive when inside I was very scared. The sort of things I wanted to share with him I felt I couldn't as it wouldn't have been fair to burden him with my worries about it all on top oh his own.

Wishing you a smooth onward path through the treatment. Op please find something that helps you keep an inner piece. I walked. Alot. X

Thank you guy and 272. It's helpful to hear of your experiences. My Dh has a different condition from your DHs, but I guess the feelings and the journey are much the same. I am so pleased to hear that both your Dhs continue to do well (guy I hope your Dhs review went well).
We are still awaiting a treatment plan (he actually has two conditions and they seem to be working out the proportion of each) and it all feels too slow. The imminent Drs strike terrifies me too. It would have such negative implications for us...none of DHs care is "elective"!

Selfishly, I am aware that Dh has several phone calls a day from people supporting him and I have none. It's terribly self centred of me, but I wish someone would gather me up and look after me. I'm hurting too (inner child speaking). Strangely the best support I have had has been from a couple of people on MN. God bless the internet! (We have had offers of help IRL of course, but sometimes what I need is to fall apart for a while, and having moved long distance within the past year it's not easy to let go to people I don't know that well)

I just wish we could get on with it.

Thank you so much for responding. That in itself means a great deal.

guy I just read your thread. So very much of what you say, especially all the descriptions of your feelings is exactly what I am feeling too. This is a place I never wanted to be.
I have to be a bit circumspect as my DH sometimes comes on MN and I wouldn't want him to know that I am nowhere near as strong as I usually manage to appear.

Fuzzy - it's not bad to feel that way at all, I know I desperately wanted someone to look after me and make it all better too. I rarely hear from my family, I naively thought that such terrible news might've made them step up so to speak, but they didn't phone me once during the entire time and not even to ask how their grandchildren were doing... That hurt but it's a whole other thread! I found that certain acquaintances were amazing - I had flowers and cards delivered out of the blue on occasion, and one that I am now much closer to turned up one day with that evenings meal sorted. I've never been so touched, it was more than anything I had ever expected from anyone. I'm rambling again I know. I think up until this point I had managed to 'coast' through life relatively easily, never had any real tragedies etc to speak of thankfully and it's somewhat bittersweet now that I didn't realize that at the time! I hope that makes sense. I hate having the worry at the back of my mind all of the time, and some days it feels like I've been told all over again but I just have to keep going.

I hope you have a plan soon so you have a better feeling of how to cope with the enormity of it all - dh would go into hosp on the Sunday eve to start treatment first thing in the morning, once he'd left I'd think 'right, get this week done and that's one to tick off' kind of thing. I'd generally just sit tight for the week, get the kids to school, tea, bath and beds and that was a day done. It was the only way I could manage. I had offers of going for lunch etc but I didn't want to see actual people very often at all, I was more than happy with the odd text of 'I'm thinking of you all xx' but I had toddler ds to keep me busy.

I also went for lots of walks! Never wanted to stray far from the house though so usually laps of the estate! Go off and cry when you need to, don't hold it in. I cried in the bath and the shower quite a bit. Remember to look after yourself too, the first week after diagnosis I couldn't stomach anything and just felt so tired and upset.

Thanks guy. Today I really wish they would get on with it. Referral to specialists was done a week ago...how long does it take to book him into a clinic? Why do they not feel the urgency or understand that every day waiting for who-knows-what is agony? Initial diagnosis was a month ago...and still no treatment forthcoming despite DH being "high risk".

I'm finding eating quite difficult. Possibly a good thing as I could do with losing a few pounds (and have done) I don't want to stray too far from the house either. Mostly I do the garden as my "therapy". I think I need to learn some patience.

Some of my family have been wonderful...making meals and sending love and chocolate. Others (and people who I thought were good friends) appear to be ignoring us completely which is hard and incomprehensible. It's not always the people you expect who come good. Or don't.

I understand completely how that feels. I spent most of my time in those early days phoning various secretaries and departments trying to see where we were in the system, between the gp, the private clinic that then saw dh, and then the nhs when they passed him onto haematology! It was terrible feeling such desperation and yet wondering why things weren't happening! Or so it felt, and logically you and I both know that things are underway, you just want dh getting treatment right now and that's completely understandable.

Is there a number you can call to chase things up? Just to put your mind at rest somewhat. I remember watching the the postman every morning for the biopsy appointment letter to arrive.

Eating is tough isn't it. I had one of those yogurt drinks in the fridge and took a mouthful when I could. It lasted me days, I couldn't even stomach a coffee in the morning at first. Just keep trying that's all.

I'm glad you have some supportive family members, it's hard when friends you thought you had don't step up but try not to dwell, they'll have their own reasons for it. Some people don't know what to say or do and will keep quiet because of that, and other people won't want to feel that they are hassling you, they might think you'll ask them when you need to etc but try not to worry too much about it all because it's worry you don't need and it doesn't matter. Are there any groups that can help that are to do with your dh's illness? Eg I contacted the lymphoma association a few times but unfortunately the cancer dh had was so rare they didn't have any information on it and so couldn't really help me! That didn't do much for the anxiety I felt, I can tell you.

Sorry for bad grammar, about to rush to school run. Pm me if you ever need to x

guy I've PMed you. Thank you.

It's coming up a year from when Dad died now and it has made me think of all the fabulous support I got from this thread, and made me think of those who were/are also going through it.

for all.

Thank you Charlie. to you too at this no doubt difficult time of thing back to a year ago. How have you been?

Thinking of the others on this thread too and very happy to hand hold with anyone who needs support/an outlet. The emotions are many and varied and often intense.

How are things with you Fuzzy?

Not great. DH's symptoms are increasing and quality of life getting more difficult. Dash to Drs already this morning.
We are awaiting the call to start the stem cell transplantation process as soon as they can fit him in.

It is all encompassing, frightening and isolating. Help is sporadic and (probably naturally) all targeted at the patient, with nothing available for the carer/partner. None of us signed up to this.

Hello? Is anyone there?