Still the storm

[Willowkins]

Continuing the support thread - mostly for the partners of people living with terminal cancer - www.mumsnet.com/Talk/life_limiting_illness/3266385-The-calm-before-the-storm?pg=10

Have been out of wifi and phone range for a few days, @notapizzaeater I think of you every day. @blindspots I’m so sorry this is happening to you, wishing you all the strength in the world

I was directed to the area as others thought it might be more relevant
.

I have changed my name as I post often on more mundane things!

My DH age 56 has been diagnosed with Stage 4 prostate cancer on Monday 16 January 2021. We are all in complete shock, I have been screaming by myself in the car as I was coming back from the supermarket yesterday. Why has it happened to us?

We had so many plans. We are now at a point when we have no money worries, our sons are sorted at university and a full time job despite this bastard pandemic. I am so proud of them.

Yet, despite being a independent women with my own career and being more than capable of running a house, driving a car and going to do things on my own occasionally I feel as though someone has stabbed me.

I am so scared. I don’t want to be on my own. I thought I was going to walk through life and retirement with husband. We have been married nearly 25 years. No previous marriages or children. I am a few years older and how smug am I. I thought I got it sorted by marrying a younger man but life has a horrible way of getting its own back doesn’t it?

I have seen pictures of widows, all grey haired old women who look my Mum. I am still working but part time which I think helps.

My DH is being so brave. If you saw him now you wouldn’t think anything is wrong. I cry all the time for what we have been robbed of. Of what we were going to do but can’t now. The diagnosis is that he probably has a few years depending on how he reacts to treatment.

He is young to get this and so seriously. Normal weight, no history of prostate cancer in family, no other health conditions.

Why us?? I could almost take it if there was a cure. Tough treatment but chance of recovering. This diagnosis was very clear. Everyone is couples now.

Has anyone got any words. I never thought I would be THAT person. These sorts of things just seem to be happen to everyone else. We have had advice last week about pension pots and are updating our wills. All practical things which are right up my street.

I am known to ‘bully’ friends and relatives to get wills and get their wishes sorted. It is amazing how many people think certain things are going to happen when they pass regardless of not having a will or anything written down .

@Moonstone1234

Welcome to the club we don’t want to be in - it’s bloody hard. All your future dreams popped. I walked round in a daze fir about a month before I got angry.

@Moonstone1234 I never thought it would happen to us either.

I think it would still be hard but easier if you knew there was a successful treatment, in our case we only had maybes and no more than a 30% chance of success but we took it anyway because he wasn't even bloody 2.

After thinking we were surely going to lose him last night, things are starting to turn and we are hopefully almost on top of the pain and it almost feels like we might get a few more days

Blind spots. I can’t even begin to imagine what you are going through.

I screamed out yesterday afternoon in my car on the way back from the supermarket (I was in the car on my own and we are rural btw!). Raging and shouting out. Then just carried on driving.

I am really not like this in real life. It’s very very early days. I feel I cannot miss out on anything. But I am a great planner. Love being married.

Sorry, that was all about me.

Thinking of all of you and although I don’t know you all you are in my thoughts.

@blindspots really hope you do xx take care of you too in this.

@blindspots I really don't know what to say, or indeed have anything to say that will make help. Just know that we are all thinking of you.

@Moonstone1234 I found a baseball bat to our fire bin helped! Dh had been diagnosed then a few weeks later my dog (who really was a mummy's girl and the only thing that got me through those long dark nights in the beginning) was very suddenly put to sleep at 6 due to liver failure that literally happened overnight. I broke, had nothing but rage inside. I saw the bat in the garden and just went crazy! It was either that or drive into a wall.

I have my own thread running along side this one called 'dh stage 4 bowel cancer' that I have used to rant and rave on. Dh was diagnosed with stage 4 bowel cancer at 39. We got together at 16, real childhood sweethearts. It's fucking hard but I am mostly numb to it now, nearly 2 years later. Occasionally I remember how shit it all is and breakdown. Covid really does make it so much worse.

@notapizzaeater you are amazing, I'm sure it doesn't feel like it right now but you are.

Blindspots think I posted on your other thread. As Loubiloo4 has put it above sometimes I think you just need people to say it's shit. We are crap in this country dealing with death so people offer a lot of platitudes when sometimes you want to take a baseball bat to something. My dad died. That is the natural order of things. I'm fine with that. Platitudes accepted. My sister was murdered. I am not fine with that. Don't offer me platitudes. Pass me the bat

Things have been pretty full on here as DH needing full time care now. It’s exhausting.
Coming by to say I’m so sorry to @notapizzaeater. I hope you are getting moments of peace & tranquility.
@blindspots what an absolute dreadful, dreadful thing you’re going through. There just aren’t the right words. X
@Moonstone1234 Hi :). I’m an infrequent flyer here but I should try & hang around more often 😊. My story probably won’t make you feel any better but I’m led to believe my DH is at the extreme end. He was diagnosed with stage 4 prostate cancer in March 2018 completely out of the blue at age 56. He is very much near the end of his life now & things are incredibly tough BUT up until 5 months ago he was still working full time, cycling & actually pretty well apart from a few hurdles along the way. In fact between diagnosis & the first ( goddam bloody bastarding) Covid lockdown we had a ball. We made it to a couple of our dream holiday destinations & generally enjoyed our family life. Our kids are now 20,17 & 10.
One of the hardest things I’ve found & you’ve mentioned it is the natural expectation that prostate cancer is something that only affects old men & that they don’t die from it. If I can help with anything at all or you just want to offload please feel free to send me a message.

Diangled. I might well do that but you clearly have an awful lot on so I don’t want to bother you. I love my holidays. Really exotic ones which fortunately we have been able to afford.

Now we are comfortably off and thought we had years of exotic locations, business class where we can and this comes around. My DH told me at 1630 16 Jan 21. Feel robbed, our time has been stolen.

It’s really no bother @Moonstone1234, I’m happy to talk about it. It’s such a dreadful shock isn’t it. I can clearly remember the devastating blow of diagnosis & knowing the life you had planned isn’t going to be the same.

@Moonstone1234 we all totally totally get it. My husband is the best person I know, the rage I feel to have him stolen from me and my DD is immense. I flailed around in a miasma of pain, incredulity and despair for quite some time. Now, like @loubieloo4 says, I’m largely numb to the horror which is what helps me cope. I am so sorry this is happening to you

I veer between numb and overwhelming sadness. Thinking about all the things we'll need for afterwards, planning for a future that he won't physically be part of.

DH and I talking to each other about it sometimes, sometimes we just look at each other and cry.

The end is coming a lot sooner than we had thought, it is unlikely we will get him out of the hospital overnight but the hospital have arranged a double room for us so our other children can stay here too for a couple of nights and we can be together this way,

Currently packing up a few things for the room change. I want to throughout everything relating to the cancer and the chemo and the hospital stay but I know I will regret it later on

There is nothing ok about a 2 year old dying from cancer and it is definitely not in the natural order of things. It is immensely shit and the shittest of the all the shit.

I took him for a blood test just to rule things out, not because I thought for a minute he had cancer. We have been in hospital since later that same day, after a phone call from the random GP that I'd made the appointment at this morning, requesting we head back down that evening to get the results and letter that sent us to the oncology department later that same night.

Also I want to throw out things as per my earlier post.

Grief is causing immense typos and fatigue is making me unable to double check before posting.

He is here now and is fine. Talking about the garden being great in the summer. Just so that I dont mislead anyone. He has metastastic cancer that has spread to his lymph nodes and bones and has just started HT. He has a CT scan booked this week and then he will be baselined and almost certainly be given Enzalutamide. His PSA score will hopefully go right down for a while until the treatment stops working.

Chemo isnt an option due to the number of visits you need to make to the hospital and from what I can gather Enzalutamide is on par (and much more expensive than chemo). Slightly less side effects. The cancer websites tell us to grab this option.

Then hopefully we have some time to get some exotic holidays booked. He is insurable but at a shocking price, we have some money so that isnt the biggest concern.

He is so calm. Says he is here now but my fear is that once the treatment starts and the side effects kick in things will be very different. We both work from home so it makes it easier.

With the bastard CV19 we cannot go anywhere but I feel just about OK with that because neither can anyone else.

Its just I went to the supermarket at the weekend. There were people laughing and joking. How dare they. I wonder if I can be one of those people one day. I keep racing ahead and wondering whether to stay in our house which is lovely but large for one person.

I know - I am being completely mad. I dont want to be out there again. The widows clubs I have googled are all full of old women. I know I shouldnt be racing ahead like this and just enjoying what time we have together but I cannot help myself.

I have managed a career (but working part time now - thank goodness), running a house is easy (bar the cooking which DH does). We are sorting out our finances, he hasnt even started to take his pension which actually makes it very tax efficient.

Does anyone every forgot for a while that this is hanging over us and does the terrible sickness and dread go that I feel every single day? How can I stop myself from crying if someone even goes close to the topic? Working helps somewhat. Distraction is good.

The immediate dread does go and you sort of forget between scans (we def did as DH was so well). And we just got on with life as best we could with bloody COVID. It was a huge huge shock how quick the end came hurtling towards us, it wasn't supposed to be this fast we had a few months left. We'd not really talked about 'things' as we had time only we didn't .

The thought of getting 'out there' fills me with dread to, we'd been married 28 years, I don't want anyone else, I've had 28 years to find someone if I had.

Notapizzaeater. Thank you. I have been married nearly 25 years. First marriage for both of us. No children from previous relationships.

We are independent people in that I wouldnt think twice about going on holiday with say one of my DS's. DH and I do things seperately and then come together for fun things, snazzy holidays etc. I run the home, get workmen in, keep the house hold accounts etc. We have seperate bank accounts and a joint account for household stuff. I am completely on top of all of that.

Its not the practical side that I am thinking of. Its living life without him, having people give a little head tilt in the future and ask 'and how are you?' that I am going to hate.

Do you remember the part in Bridget Jones where she goes to a dinner party and she calls the other guests 'smug married couples'? I was one of the smug ones even though I do remember being single (didnt get married until my mid 30's). I didnt mind being single at all but now - well now its different... I feel so scared even though everyone who knows me will say that I am one of the people who shouldnt have any trouble adjusting.

WELL I WILL!

We are definitely talking about things. Wills, finances etc. That side all looks fine. We are in a good place and will be even better now that we have been given 'notice'. What something like this does is give you time to sort out the paperwork.

I know that we will all pass on one day - we all know that. What I didnt expect was we have been given 'notice' in the most horrible way.

@blindspots
Currently packing up a few things for the room change. I want to throughout everything relating to the cancer and the chemo and the hospital stay but I know I will regret it later on
I'd avoid the growing things permanently away. I threw away everything connected with my dw's illness and end of life care including all the clothes she only wore because she was ill. I regret, six months on,throwing away some of her clothing so I'd suggest to pack it all up and stick it in a cupboard somewhere for now. Sending you so much love.

Tough day here. DH’s cancer has spread to his brain and it’s really affecting his personality / who he is. Prostate cancer does this in less than 1% of cases (0.1 I think)! Utterly despairing of how to deal with him. He’s refusing the carers help so tonight I ran upstairs when they arrived & sat with the DS’s whilst he just chatted with them & im okay with that. He’s so full on that 30 minutes being able to just be is lovely. But then..... guilt hits & I don’t want to waste a minute not being with him.
I do feel as though now the brain mets are beating him that I’m grieving for him already.

@Moonstone1234 DH had bone mets & lymph involvement at diagnosis too. He had abiraterone (same kind of drug as the enuzalmatide) & he did so well on it. No side affects at all. The HTdoes bring some unwelcome symptoms but again DH has done okay with those.
We used www.insurancewith.com/ & their prices were much more reasonable. Even when his PSA started to rise again.

Sending much love to all.

@Blindspots
Sending you love and strength. Youve been in my thoughts today

Diangled. I am going to say a little prayer for you tonight. Not at all religious but it cannot do any harm if that is ok with you.

Thank you for the info on the drugs. I hope to be around on this thread for a long long time.

@Blindspots sending you love and light

He is gone