Hello & thank you.

[Mick_1707]

Hello & thank you for the add.
I am a 64 year old carer to my wife (61) who has incurable cancer.
She is receiving palliative treatment but is finding it very tough going and apart from the chemo also contracted several infections which necessitated some emergency treatment.
All therapy is currently suspended for at least 3 months whilst she gets her strength back as she would not be able to cope with the next stage (which is radiotherapy) right now.
She will have another scan in 6 weeks and then a review in 8 weeks to decide where we go from there.
This is not a rant or a whinge; just an introduction as we just get on with things, doing what we can when we can.
Interestingly we also seem to be different to most on here in that we cope better, together, on our own. (If that makes sense.) I have no separate personal social life and I am retired and I'm quite happy like that apart from just the very occasional wish to be able to get out on my own with my cameras and take some photographs.
No, my problem is that sometimes I resent family coming to visit and stay with us.
I should not resent their presence, I love them and I understand that they need to make their memories but sometimes it does irritate when they try, for all the best motives, to encourage my wife to eat things that she does not like to do and do things she does not want to try to do.

[jenny lucas]

Mick hi - tricky things, relatives! There's a term on this forum which is 'helicopters' - it means relatives who completely ignore you 90% of the time, then fly in (at their own whim!) drop down in your garden, proceed to tell you everything you SHOULD be doing for your caree, then blithely lift off and fly away again 'job done' (as they smugly think....) They offer no real help, and are more of a pain than a pleasure.

That said, I can, as you yourself say, understand why your family want to make their memories, but probably, I suspect, their suggestions (unwanted and uninvited!) are motivated primarily by fear. Fear of loss and being 'out of control' of your wife's remaining lifespan. Cancer evokes perhaps more fear than any other disease simply because it is incurable, and I think it is human nature to seek to cast about and perhaps try any kind of 'voodoo' (for want of a better word!) to try and make it 'curable' - so we know there are endless 'cures' all over the place, from not eating sugar, to eating turmeric, etc etc, which, yes, some of which may apply in part, but which probably also come under the psychological category of 'rituals to keep death at bay', and may well be looked back on in the same way we look back on medical 'spells' (eye of newt etc!) that were practised in the helpless middle ages to ward off incurable diseases.(That' said, if any of the rituals work, as in, are indeed anti-cancer in impact, and if they 'cheer one up' psychologically, then they are definitely worth while in my book!)

I hope your wife recovers sufficient strength to head into radiotherapy. Personally speaking, I'm glad you call her cancer 'incurable' rather than 'terminal'. I don't think the T word helps in the slightest - it simply makes one feel 'doomed'. The blunt truth is that with advanced cancer it's a question of 'keeping going' and 'outrunning' so to speak the advance of the disease. Stepping from treatment to treatment, and hoping that more comes out of the research labs 'in time' etc etc.

Not using the T word was one of the things I really liked about my late husband's oncologist. After all, many lethal conditions are incurable - think diabetes for one! - but they are not untreatable. That's the vital difference.

(Personally,though, I LOATHE the word 'palliative' though! Or rather, the way the oncs use it currently. The point is, is the treatment 'anti-cancer' - ie, reducing the number and size of the tumour/s, or does it just ameleriorate the symptoms? Palliative care is about 'comfort and painfree' NOT about 'anti-cancer' treatment. AC treatment is 'therapeutic' even if it is not '100% successful' in eradicating all tumours. And, anyway, as we know, grimly, even early stage cancer can potentially metastasise and even if the primary tumour is completely excised, tumour cells can have leaked into the blood/lymph and 'lurk', sometimes for years, and then, for reasons which the oncs still don't really fully understand, but which seem to be associated with factors such as inflammation, the 'nesting' tumour cells can start dividing, and bingo, one gets recurrence and secondaries, and we are into the 'incurable' zone......)(or, indeed, they can lurk, but never flare, or even die themselves.....)

But, as you and your wife know, we don't have to 'cure cancer'....we just have to 'not die of it' prematurely(ie, until we are old, with a good quality of life throughout!)

Wishing you both all the very best, kindest regards, Jenny

[bowlingbun]

Hi Mick,
This will be upsetting, but it may also help too, so I apologise in advance, but it helped me understand the care of my mum in her final months, in her nursing home, and so I could support her much better.
If you Google "Signs of Dying" you will find some really good articles written by people from hospices. These explain why the body doesn't want as much food or drink as normal, and how the body knows how much it can cope with at any one time. So forcing food or drink on someone at this stage of life won't "make them better" but will make the patient more uncomfortable.
Then ask your family to look at the article you feel is most appropriate and then tell them that the time for them "making memories" is past, this time must be about making mum comfortable, doing what mum wants and needs every minute of the day.
It is absolutely NOT up to them to choose what she eats and what she does.
If necessary, ask them to stay somewhere nearby, rather than at your home, so that it is quiet and peaceful for you, so they do not upset your routine. If they do stay, then they should be doing all the cooking, meal prep., bedmaking etc. to give you extra rest, not making extra work.
(You are not the first forum member to have this problem).
Has your GP explained that towards the end, he can arrange NHS Fast track Continuing Healthcare for your wife - google this for more information? It will enable her to stay at home with any special pain relief she needs. Do you have a MacMillan Nurse, or support from your local hospice, practical or emotional?
Come back here whenever you feel the need, there are others here who have made the same difficult journey.

[jenny lucas]

Mick, hopefully BB is looking 'quite far out' (hopefully VERY far out!), but it could be worth getting in touch with your local hospice 'in advance'. My husband went into end stage very abruptly and, sadly, unexpectedly (his GP gave me the best explanation - he said 'The body can cope and cope and cope with having the cancer burden, and all the co-morbidities, and all the systemic stress of drugs/radiotherapy etc etc, but there can come a point when it simply becomes 'too much' and the last 'straw' can tip the body into effectively 'throwing in the towel' and then there can be a very rapid collapse into end stage).

He was hospitalised in emergency conditions, and then discharged home to me (I was desparate to get him home!), and 'hospice-at-home' care was set up via the hospital/gp. It worked really well, and I would recommend it if it is available, and if you and your wife would prefer it. The nursing care was supplied by a mix of district nurses and hospice nurses, but it did require someone 'at home' 24x7 for my husband to be 'on the look out' for him as he sank into unconsciousness. One thing that cannot be done 'at home' however is any kind of intravenous drip (because it requires that a nurse be permanently on duty - not provided by the NHS and v. expensive to hire privately). My husband was on a syringe driver for meds/pain relief/tranquilliser, which was a sub-cutaneous needle left permanently in the skin (plastered in), that fed back to a small box (about the size of one of those giant matchboxes) that lay under his pillow, and was topped up as necessary by the nurses. It restricted his movement a little, but not much, and was also portable.

However, all this is, I very, very much hope way off yet for your wife (if at all!), but I do think, with hindsight, it would have been useful for me to have understood the process of 'end stage care' and what the options would be, at least potentially, though of course real life has a habit of dictating what is actually possible.

For now, however, I do agree with BB that ideally your family should not stay with you (unless they are actually useful!), and should certainly be 'lifting the burden of care' from you by doing shopping/cleaning/cooking.

They are NOT HOUSE GUESTS!!!!!!!!!!!!!

All the best, KR, J

PS - just to say that in terms of hospice care, I have heard of patients that go into hospice for 'end of life care' and then are doing so well they actually come out again and have another lease of life! So hospice does not automatically mean 'dying'. (Somewhat sardonically, it could be that the reason they rally again is that hospice care is substantially better than hospital care!!!!!!!?????)

[bowlingbun]

Where I live, there is a wonderful hospice, which looked after my dad when he had prostate cancer. They provided care while someone was LIVING with cancer. My dad was a really down to earth scientist (can a satellite scientist be down to earth?!) Nevertheless, he loved going to the "day hospital" they ran in town, not actually at the hospice, it's a while ago now, but I'm sure they supported him for over a year. They had talks, weekly check ups from the doctor, if they thought he needed something it was all arranged the same day before he came home, dad even had reflexology and loved it! Mum and I were amazed, but they were truly wonderful.

[jenny lucas]

This is a bit random, but a hospice nurse taught me how to give hand massages - just gently massaging each joint of each finger, and then working along, and into the palm and so on. Very soothing. Easy to do too, unlike many massages.

[Mick_1707]

Mick hi - tricky things, relatives! There's a term on this forum which is 'helicopters' - it means relatives who completely ignore you 90% of the time, then fly in (at their own whim!) drop down in your garden, proceed to tell you everything you SHOULD be doing for your caree, then blithely lift off and fly away again 'job done' (as they smugly think....) They offer no real help, and are more of a pain than a pleasure.
Wishing you both all the very best, kindest regards, Jenny

Just love the helicopter metaphor, can be so true too
Your whole response was appreciated.

[Mick_1707]

Hi Mick,
This will be upsetting, but it may also help too, so I apologise in advance, but it helped me understand the care of my mum in her final months, in her nursing home, and so I could support her much better.

Thank you but I think you have perhaps not interpreted my post in the way I intended it and you are looking a bit (a lot) further ahead than I am.
Also, no one forces anything on my wife (as I wrote, they encourage) I would never allow that to happen.
Caring, in general terms, to me includes enabling people to make their own decisions about what they have decided is best for themselves. Sometimes though, that can be very difficult.

[bowlingbun]

I suggested these articles as they explain, much better than I could, about how the body knows instinctively what it can manage to eat, because the body isn't working at "full throttle", and that must apply to your wife too.
The family should be supporting you (and it sounds like you are doing that really well) and not creating any extra work or tension for you.
The same applies as far as outings are concerned. They shouldn't be putting pressure on her to do things she doesn't want to do, to "make memories".
When I was really ill, recovering from very major surgery to save my life, all I wanted to do was sit quietly in my own home with my family. I remember thinking at the time that it was when I was supposed to have a bucket list, swim with Dolphins, see India, or other exotic drams, but I had no desire whatsoever to do any of those things.

[Mick_1707]

The same applies as far as outings are concerned. They shouldn't be putting pressure on her to do things she doesn't want to do, to "make memories".

Thank you but I still feel you have misinterpreted what I wrote and you are making a lot of assumptions.
I never stated that anyone was putting any pressure on my wife. It was about how I felt.
As I wrote it was not a rant or a whinge.