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. :(

Reading up is so double-edged for me. It's almost compulsive at points but then I know it plunges me into feeling like I did a few weeks ago, panicky and despairing, so I have to pick my moments to do it when I'm feeling I can cope with the emotions that ensue. I'm not that naturally trusting of the medics but it's a relief to know treatment is happening now and I hope you feel that relief soon too fuzzy.

Does anyone else find their loved one is reluctant to spend time on their own? My DM is a hitherto fiercely independent but has become almost opposite almost overnight.

Hello to silverbat and imina. The Cohen quote is lovely but it does very much depend on where your neighbour is at I think.

How's the chemo going for your DH silver ? My DM has just had her first dose, second at the end of this week, then neutropenia (sp). Not sure what to expect obviously, but its v worrying. Cleaning like mad atm.

'The new normal' is so uncharted, but as you say luv better than the alternative.

How are you charley ? I'm so grateful to you that you wrote a bit about your own experience, it really helped me to know others go through this, altho I'm sorry you have, and sorry everyone else has had to too.
to all, koko.

Madroid I can relate to cleaning up till everything smells of disinfectant. Neutropenia is scary but generally patients are given immunity boosting injections which my DH could never have as he had leukaemia and those injections would only multiply leukaemic cells! So we had 7-15 days of neutropenia to deal with and then another 7-10 days before counts reached the stage where they could attempt to fight infections. DH had to take anti viral, anti fungal and lots of other medications to try and get through those low white blood count periods. I had a no pets,plants,flowers,visitors,kids policy in place most of the time. Food was mainly frozen supermarket or freshly cooked at home with no salads , just plain piping hot stuff. Also had anti bacterial hand wash everywhere around the house. Kept a diary of temperature,checking for fever spikes,recording atleast 4times a day.Most of the time DH preferred to be alone watching television. So very different coping mechanism to your DM. If she loves having people around don't stop them but restrict the number to 2 at a time. You are right we have to KOKO
Fuzzy hope all goes well this week at the meeting.
to all

Hello silver and all.
I need to read...I used to work in med research and am aware of the cage of papers and also that the stasts they use are even older, but for me it is so much better than not knowing or the simplistic language and no real info of the countless booklets you are given.

Yes, I have noticed my DH seems more clingy, for want of a better word, than previously, but then again, because of neutropenia he's not allowed to socialise except under strict circumstances, so I'm sort of all he's got! He's been neutropenic (and with pan cytopenia) for months. Infectionand injury are the bbiggest risks at the moment. So similar with the cleaning! And no treatments for DH ( bar supportive) until stem cell transplant.

It's all such a learning curve, isn't it?

Hello everyone

I'm confused about the neutropenia - I think I need 'An Idiots Guide' to it!!

My DH is more like Luvs. He is becoming an avid viewer of Come Dine With Me and 4 in a Bed. I'm not used to him being here so much as he has always been a workaholic (still is, as he is able to do a lot of work from home). Its difficult sometimes as I get quite a lot of shushing if I enter the room, so make a quick exit and have a little cry. I know it's not personal, and a combination of drugs, lack of sleep and pain, but it sometimes feels that way.

Neutropenia....low neutrophils, the white cells that fight infection. Therefore no resistance to any bugs, which have the potential to overwhelm the system and are dangerous. So you have to avoid people, especially people with colds or sickness or anything dodgy, children are especially dangerous! And a 'clean diet', no soft cheese, cream cakes, salad, blue cheese...

DH can't go anywhere there are lots of people. No cinema, no church, no concert I was singing in. It's quite lonely and limiting.

Hi , can I join this thread please...my db is starting chemo for metastatic bowel cancer tomorrow ( 4 wks post resection)...he lives 7 hrs away and although older than me by 17 yrs we have become closer in recent years ( more so since our parents have died and we realise that we are now 'it' )
I work in oncology, so know all the practicalities regarding his chemo , but finding it so difficult being so far from him ( colleagues whom I work with who have had relatives with cancer treated in our day unit get lots of support and I feel a bit like 'out of sight out of mind' as far as they're concerned )
I'm also not too sure if he realises it's only palliative chemo he's getting.....maybe that's the elephant in the room?....( he initially didn't tell me he had mets)
If he responds to this chemo he may be offered surgery on his liver mets but that's several months away
Just need a bit of hand holding I guess

Thanks Fuzzy. I got confused as I don't know anything about blood cancers, so thought it was to do with that- as you and Luv had mentioned it, but Madroid did too, which is what confused me! It isn't a word I have heard before.

Stopyourhavering. I'm sorry about your DB.

I would have thought given the nature of your work, you would have found it easier than most to get support - it doesn't seem fair!

Silver My DH watched Masterchef Australia and My Kitchen Rules or food chanel and that was ironic as chemo and mouth ulcers rendered his taste buds useless and eating a chore.
Fuzzy I wished my DH needed me more than just to drive him around but now a year down the line, he is emotional and seeks my company a lot. I find it overwhelming and then feel guilty about feeling that.
So sorry to hear about your DB Stopyour. I found the staff in Oncology very understanding, cheerful and just generally lovely. It must be hard for you to be that support especially when you need it yourself.

Hello stopyourhavering I'm sorry to hear about your DB. It must be specially difficult being such a distance away.
However, my cousin lives 300 miles away from us and she is the biggest and best support of everyone. Understanding, emails and rings frequently and is a great listener. Geographical distance perhaps doesn't always mean emotional distance.
I am finding that support for carers is very variable...from inclusive to invisible.

We are playing the waiting game today.

FIL is having an op for bowel cancer this morning - he was diagnosed a couple of weeks after DH . Neither of us can put our minds to much - the poor dog had his food forgotten. I think we are going to go for a nice long walk, and DH needs his bloods later for chemo tomorrow. Hopefully we will hear something when we get back.

We live 250 miles away, and as DH is on 2 week cycles it might prove difficult to visit, but we will try. FIL is struggling to stay positive, so I think it's quite important we go if we can, as DH seems to buoy him up. I was worried it would drag him down, but so far so good.

Waiting is just the worst. And there seems to be so much of it...bloods, test results, appointments, letters...always waiting. And all of it so worrying.
We live along way from family too, but I am more concerned about how to prevent too many visits from MIL etc. Quick pop-ins would be fine, but that's not possible and I can't cope with the extra work and thinking that longer visits entail.

I know what you mean Fuzzy. I think the best thing to do is just be straight, and say I'm not coping very well at the moment and you will just have to take us as you find us. If that means beans on toast for dinner and you going up to bed early with a book, then don't feel obliged to run around playing the hostess, just do what you need to do for yourself. It's ok to be 'selfish' given the circumstances. You need looking after too.

If you're not up to a visit, would she understand if you just said so?

Not sure. In the past we've had " oooh fuzzy doesn't want us to come" with accompanying wailing, but last time she stayed in a B&B which was better. I can't play hostess. Lunch or cup of tea are fine,but anything more is jjust too much. It's like I can't keep up the pretence of strength and cheeriness that long and need quiet and my own space.

Anyway, tomorrow is meeting with transplant team. We should have a better plan after that.

Hoping you are a bit further down the line today, and have a plan in place.

How are you Fuzzy ? Hope you can stay strong and thinking of you.

And hope your FIL's OP went well Silver.

We had a v stressful night earlier this week (days now jumbled) with call to OOH that took over 4 hours for dr to turn up to while DM is pain. So hard to watch/hear and not much I could do to help.

The loneliness is getting to me atm again, going through things that no one knows about and are too personal to tell anyone else about, and anyway they're not my things to tell iyswim. The close friend I'd normally confide in is not great atm, so that's been a 'surprise'.

Anyway nxt chemo today. Worried but it's progress of a sort.

Thank you, lovely people. Looks like end of January for the transplant. It does give us a plan but it is so risky it's not like normal health problems where you think " oh I'll be in Hosp a few days then I'll get better". And the " go and enjoy Christmas " has an undercurrent of " because it might be your last one". They are prepping the donor & doing virology now.

Madroid Has your DM been given better pain meds now, so you both aren't in that situation again? Night time problems are always that much more scarey, as you have less options available. How often is you DM having chemo?

Fuzzy I'm sorry that the wait is so long, but at least the plan is now in place, so further along than a few days ago. The go and enjoy Christmas comment sounds a bit crass to me - I would have probably started crying at that point.

DH is having a problem with his pump I think. He went in on Thurs, has chemo, and then comes home with a bag of it over 2 days through a port in his chest. He was supposed to go and have it disconnected around 2.30 today, but it wasn't empty. They chased him at 4, so he sent in a pic of how much was left. It still doesn't seem to have moved much.

Yes thanks silver all seems to have settled again for the moment. Chemo is every 2/3 weeks. Don't know if it's that or the steroids or something else, but DM seems a bit less tired and on top of the pain atm.
Hope your DH is ok and all has worked as it should.

Good news then Fuzzy ? It must feel like quite a high risk plan but I suppose still the best option? Christmas is a bugger of a time in some respects. I could do without it this year, but then feel guilty because I know I should try and cherish the time.

Can I have a rant? Why is it so often the case that everything is left to one sibling? The others act as though it's not really much to do with them, or certainly not as much their responsibility as mine. Not that I wouldn't want to do it... just be nice if they were willing to do more as well. I couldn't swan off home after one visit a fortnight and keep any self-respect.

madroid I feel your pain but I am that absent sibling. My elderly mother has just gone into a home and has been looked after by my sister for some years (not living with her but close). I am 300 miles away and feel massively guilty. I wish I could visit as often as once a fortnight but I can't. And I hugely appreciate what my sister has done and continues to do.

DH's treatment is hugely high risk. Only a 50% chance it will work and a 20% chance he'll die from the transplant itself. It feels like tossing a coin.

Hi Fuzzy To say that must be a worry is an understatement I know. I suppose it's that mental trick we're all trying to perform everyday of staying focused on the present and trying not to look too far ahead.

I think with your DH's illness you might be forgiven for not taking a main role in your DM's care Fuzzy. And the fact that you're aware of all that's being done and are appreciative will go along way with your sister I'm sure. Whereas in my case ...

Hope you have a good day and wishing you and DH much courage and strength.

Thanks madroid (autocorrect swears you're Android!).
Today is chilly and grey so we are tucked up under fleecybrugs on the sofa watching Cranford and drinking tea!
Hope your having a good day too.

How is everyone? How are you coping with Christmas?

I'm crumbling a bit atm. Think it's really sinking in now and I can't bear it :( Sorry for the downer. Bugger bugger buggerty fuck. It's shit.

Sorry to hear you are struggling madroid although it is ok and understandable to struggle. Hope you are feeling a little better now, things are always worse in the middle of the night.

I have a relative who is very ill and my emotions are a bit all over the place. Trying to look after myself to be strong for them though.

There aren't really any suitable words to say are there? It's shit.

I'm sinking too. Our lives have been completely taken over by bastarding cancer and I am trying to hold it all together for DH and take as much strain off him as I can, but I can feel my anxiety (a previous problem) rising daily.

We did see a very nice consultant yesterday though who asked if there was anything she could do for us, and did we want any alternative therapies? Most of the time I an chasing test results and pushing for treatment dates and trying to hurry the pharmacy along....it was a nice change to be seen as a human for once.

Christmas is especially hard. We are more or less confined to the house (neutropenia infection control) and it seems very hard when everyone else is out having a good time (or appears to be). And always the thought that this might be our last one....

Love, good thoughts and prayers to all those going through the same or similar. x