My wife has Stage 4 Terminal Cancer

My wife has Stage 4 Terminal Cancer

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ourchris

Original Poster:

60 posts

188 months

Monday 27th November 2023
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Hello all - I'm sure some of you will tell me that I should be getting counselling for this - but in some ways I don't feel ready yet, and it feels cathartic to put this on here to a load of strangers, so here goes. Oh - and my Spelling and Grammar is atrocious, so feel free to correct / take the P as appropriate.

Back story is that in 2016 my OH had breast cancer, ending in a pretty fierce regime of treatment that involved a double mastectomy, hysterectomy and various lymph nodes being removed. She was given reconstructive surgery and the all clear in 2017 - and so life moved on.

She's 48, and we have 2 kids who are now 11 and 13. I'm 50. Previously, they were too young to comprehend what was going on apart from mum losing her hair and then mum getting better again.

Back in June, she experienced what initially was thought to be a blood clot on one of her lungs - CT scan revealed a shadow on her left lung and evidence of small lesions on liver and pelvis. At this point because of the type of cancer she has, the prime route for treatment was hormone therapy. The lesions were tiny, and so the Doctors were confident that this would treat the cancer. We were warned that as this was a recurrence it would be classed as Stage 4, but with treatment she would be given at least another 10 years.

Being guided by the Doctors and her cancer nurse, we told this kids that the cancer was back, but it was treatable - and so we pushed forwards - went on holiday which was okay and she managed fatigue / pain as it came along like a proper fighter.

The Hormone therapy didn't work - and so the decision was made to move to Chemo - with her life expectancy dropping to 2-3 years. Again, guided by the professionals, we told the kids that the cancer was still treatable but that hormone therapy was not doing what it should have done.

To make things more complicated, as she progressed with the chemo, and due to the nature of the tumour she has she contracted sepsis, which resulted in a hospital stay and her implants being removed. OK - let's push forward and continue with the chemo.

At this point, my OH started to think that she was end of life and had little time left - I shaved her head as her hair was falling out - this was awful.

She said to me that last time when she lost her hair it felt temporary, but this time it feels permanent.

Roll on a couple of months or so, and we were told that this chemo wasn't working. At this point we were guided to tell the kids that she was terminal - and to start the conversations about my OH passing - as you can imagine, this was awful, but my 13 year old daughter started counselling which is helping her. My 11 year old son prefers to talk to me and his friends about this as the moment - we've been told that this is OK by the professionals, as you can't force counselling - just keep talking and being honest.

The stats tell us that the sooner and more honestly you talk about this with them, the better they deal with it moving forwards. She's an engineer and very practical !

They changed the chemo to a "this is your last option" but said at this point she would still have over a year to come to terms with it, and we could prepare the kids - and do that "making memories" thing - managing the pain and fatigue to facilitate this.

Last week - and seeing a noticeable decline in muscle mass, increase in fatigue and pain the Doctors told us that at best she has a couple of months left. Her blood calcium levels are elevated, which indicates that the cancer is progressing in her bones.

My OH spoke to the kids about her wish not to die at home, as she wants the house to be a place of good memories. She also signed a DNR. The kids were remarkably resilient but it's clear they are both struggling with this.

I speak to them both late at night about what happens when mum dies and how long she has left, and I've tried to be as honest as possible. The honest answer is that we dont know how long.

Since then, she has noticeably gone downhill. Muscle mass has again decreased, and she is having difficulty with the smallest of tasks such as opening a bottle or getting up out of bed. She fell out of bed on Saturday and couldn't get up. My 13 year old was first to get to her, and this was incredibly upsetting as you can imagine. Fortunately my son was at a sleepover and so didn't see this.

At the moment, all she is doing is sleeping and medicating. She gets up for a couple of hours a day - and is overwhelmed by the amount of support / people that was to see her / help. We have an incredible set of friends around us that are being amazingly supportive - to the point that they have a rota going to look after her if and when I need to leave the house.

I can't believe how strong she is being facing end of life - there has been no massive outpouring of grief or loss so far, just an overwhelming sadness that she wont see the kids grow up, have lives, get married - or her grow old. She has said more than once that she wishes she could end it on her own terms rather than this pain / sleeping / decline. As I said, she's an engineer and incredibly practical - as an example, she's right annoyed that she can't enjoy her pension - but she is happy that I will be financially OK.

Her sadness is mainly driven by the fact that she can't "make the memories" that she wants to make with the kids. That is heartbreaking.

For me, I'm trying to keep things as normal as I can. Work have been absolutely incredible so far, and have basically told me to work as and when I feel up to it or my OH's care allows. This has taken a burden from me.

As I am a powerfully built company director (needed to fit that in somewhere), we are fortunate enough that the mortgages on the houses are paid off, we have savings - and as she passes due to pensions and death in service, I will end up being comfortable.

On to the "How are You?" conversation that everyone keeps having with me (concerned face, corner me and constantly ask the question)

There is some guilt here, as I am not thrashing around on the floor doing the whole "woe is me".

Everyone else seems to be doing this on my behalf and telling me that I need to have counselling. But I don't feel ready.

My primary focus in her and the kids - and making sure that they are okay.

Is it the right thing to think that "It's not about me ?"

I don't feel "sad" but I am feeling a loss - I guess because I have time to think this through, it's helping - and the loss is coming from the fact that my OH wont be there for all of my kids milestones.

I also worry constantly about how this will affect them long term. I know kids are resilient, and there is never a good time to lose a parent - I just hope with love and memories, I can keep them on an even keel. They are both intelligent kids (I know all parents say that) - and I'd love them to make their mum proud and make the most of themselves.

As I've said I don't expect much from this post, it's just incredibly cathartic. I've not written all of this down to date.

Should I feel "more sad" or "more grief" - I'm not sitting in a dark corner - I feel guilty for still enjoying things, but I guess that's normal. We bought a Subaru GC8 UK2000 that I am going to renovate before all this started (this is a car website after all), and I'm still planning / getting parts etc - this feels wrong though.


In conclusion, be good to your family as you don't know how much time there is.


Regardless of all the things we have you can't buy time, and I'm rapidly concluding that this is the most precious thing we have. I've worked like a loon over the last years to get all of the "things" we have but I don't have time and I want more.

Thanks for reading this

ourchris.









Wacky Racer

38,735 posts

252 months

Monday 27th November 2023
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I hope you find some comfort in writing that down.

Unfortunately death comes to us all eventually, there is no escaping it.

Best wishes to you and all your family.

SKM1984

208 posts

154 months

Monday 27th November 2023
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All I can say is thanks for sharing, puts into perspective today for dealing with my kids this morning and later this afternoon.

ettore

4,284 posts

257 months

Monday 27th November 2023
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I don't think you need to be beating yourself up about how you feel - you're currently in the midst of a very difficult process and your emotions will fluctuate wildly. Keep talking and thoughts with your family.

alscar

5,047 posts

218 months

Monday 27th November 2023
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I'm not sure I can add very much but just to say I hope you did indeed find that writing down that very sad tale you did indeed find it cathartic to a degree.
I lost my mil ( to whom I was very close ) 2 months ago and also my Aunt ( again very close ) 3 weeks ago but I cannot begin to imagine what you are all going through.
Thinking of you all from some random stranger.

Slow.Patrol

755 posts

19 months

Monday 27th November 2023
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OP, I hope writing it all down was a help. It was a difficult read.

As the spouse of someone who has stage 3 cancer, I found a really helpful group on Facebook for the spouses of people with a particular type of cancer which has helped. We share stuff like side effects of treatment etc

I think your wife is very wise not to want to be at home for her final days. We nursed my Dad at home (also cancer), and the house never felt the same. Have you investigated hospices? Also the Macmillan nurses were great in providing respite care with my Dad so my Mum could get yo the dentist etc.



mikeiow

5,893 posts

135 months

Monday 27th November 2023
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Not much to add other than to express sympathy with you at this incredibly difficult time.

There will be hard times ahead & I feel for your wife in being unable to make more memories with you all.
You will have memories of happy times in the past, which I am sure will help. Children are resilient creatures, & I hope you are all able to help each other through the weeks & indeed years ahead.


Siko

2,032 posts

247 months

Monday 27th November 2023
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So sorry to read this but thank you for sharing. My best mates wife died from breast cancer recently and she was a similar age with slightly older kids, but they tried to keep the terminal aspect from them for as long as possible. I encouraged my mate to be honest with them and it turned out she only had a couple of weeks left then anyway, as she went rapidly downhill sadly. I think that was one of the best bits of advice I have ever given anyone as spent a lot of quality time together in her final days, so I think it is amazing your family is so open about it.

Scrump

22,739 posts

163 months

Monday 27th November 2023
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So sorry to hear your news, my thoughts are with you and your family.
Make the most of the time you have together.


If you haven’t already, you may wish to look at this thread:

https://www.pistonheads.com/gassing/topic.asp?h=0&...

It is a place where those suffering with cancer and their relatives/friends can post. Many people have found it useful, including me.

Hoink

1,449 posts

163 months

Monday 27th November 2023
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Heartbreaking.

It might not feel like the right time but could it be worth making a diary on your wife's memories for your kids? Holidays, where she went to school, where she grew up, big things that shaped her life, how you met, etc. Just things they don't know about her which they might be interested in when older.

Sorry if this isn't appropriate. I'm not sure how best to phrase it.

youngsyr

14,742 posts

197 months

Monday 27th November 2023
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So sorry to hear that you and your family have to go through this.

About your questions on how you "should" be feeling about all this - don't worry, you'll deal with it how you deal with it. Everyone is different and I believe men in particular tend to go into "practical mode" to deal with very stressful situations, i.e. focussing on taking care of others and all the admin/practicalities that are required. Reading between the lines of your heartbreaking post, I suspect this is how you are dealing with this stage of the process.

There will be time later on to process your grief, if you need to. You may find it hits you several months down the line. You may find it never hits you, this is an incredibly traumatic thing to go through (you can see that even strangers reading about it are moved by it) and you are right in the middle of it, your mind may just decide it cannot deal with the emotional side of it and therefore buries it deep down inside you. Perhaps there will be time and space to reopen those emotions later on, perhaps they're won't. There is no "proper" way.

Either way, your mind will do what it will do. Try to talk about if you can, try to speak to a therapist if you feel up to it, but don't worry if you don't right now.

I was told by a grief counsellor once that most of her clients come to her around 1 year after their loved one's passing, again, that's not a target for you to measure yourself against, I just include it to give you an idea that many people don't really process the passing of a loved one for quite a while.

You should also give yourself (and your family) credit for how well they're doing with this horrible situation, it sounds like you're all managing incredibly well.

Best of luck to you all.


Edited by youngsyr on Monday 27th November 12:22

Jordie Barretts sock

5,834 posts

24 months

Monday 27th November 2023
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You seem very pragmatic and practical about this, which I think is good.

My mum died 13 years ago from lung cancer, we tried to keep things as lighthearted as possible whilst still recognising things sometimes need to be said seriously.

What I would say to you is my mother seemed to brighten up towards the end, but then went downhill very quickly afterwards. They say a candle burns brightest before it goes out. Seemed to be the case.

I think you're doing the right thing, counselling is there when you want it, you'll know when you need it. But the sense of something missing when she does die is overwhelming once the drama of funeral and probate are over.

Keep doing whatever helps you mate.

soad

33,290 posts

181 months

Monday 27th November 2023
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Tough read.

My heart goes out to you at this difficult time.

Sheets Tabuer

19,463 posts

220 months

Monday 27th November 2023
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I hope you can take some comfort in the knowledge that many people you have never met are wishing you the best, and whatever path this all takes it is as easy as it can be on you and the kids.

kevinon

897 posts

65 months

Monday 27th November 2023
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You sound like a great Dad and husband. Your kids are lucky that you are so aware of their well-being, and their possible reactions as this progresses.

If a time comes when counselling would be helpful I reckon you will know, you will go, and you will be as open as you have been here. That is a good background for coping with the hand you have been dealt.

Wishing you and your loved ones well. And thanks for posting.

smn159

13,290 posts

222 months

Monday 27th November 2023
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Sobering read and does put things into perspective. As has been said above, don't beat yourself up for not feeling how you think that you should - people deal with trauma in different ways. It is likely to hit you at some point, maybe hard in one go or maybe as a gradual thing.

Be mindful of it and make sure that you keep strong enough to support the kids. Counselling can definitely help as a part of this, even if you don't feel as though you need it.

Wishing you all the best


halo34

2,755 posts

204 months

Monday 27th November 2023
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Heart goes out to you - sound like a great dad and husband. Not experienced loss so close, but it does put things in perspective.

I dont want to put anything trite so keeping it brief.

Turkish91

1,107 posts

207 months

Monday 27th November 2023
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That was a really tough read but bravo for writing it all down and getting it out there as such.

I don't think you should feel guilty for not being more sad or grief stricken - everyone deals with things very differently. In some ways, staying strong for both your partner and the children is arguably the best course of action.

If you get even an inkling of thoughts of going to counselling then I would say it's worth giving it a go. If you have doubts whether it would help - you won't know until you try it - and there is certainly no shame in it, whether that be before or after the day comes.

My thoughts go out to you and your family at this tough time.

ClaphamGT3

11,471 posts

248 months

Monday 27th November 2023
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An awful position to be in; made all the worse for the fact that there is no definitive 'handbook' to get you all through this.

To the 'Is it wrong to say its not about me?' point, the answer is no; it's not wrong to be thinking like that. At the moment, putting one foot in front of the other and keeping things going for everyone (you included) probably is just the right thing.

The point will come, however, when it emphatically *will* be all about you. You will need to recognise that point and lean into it. You'll be naff all use to your children and you'll do yourself long term harm if you grind to a functional halt because it feels selfish to embrace your own grief and your own reconciliation with events. You talk about what sounds like a fabulous support network. I'd engage them when the time is right to support you and the children whilst you come to terms with what's happened.

Oh, and keep posting here for as long as it helps - this place can be beyond maddening at times but it never ceases to amaze me how it comes up trumps when it really matters

Tom8

2,614 posts

159 months

Monday 27th November 2023
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So sad, so sorry you are all going through this, but your focus on the children is great. Just out of interest I know the Ruth Strauss foundation (her husband was former England cricket captain) which is there to support children (and families) going through this. Just an idea which may be of interest or benefit.

I wish you all the very best.