DH - cancer diagnosis - I'm not coping

[Chasingsquirrels]

After feeling unwell over Easter DH saw the GP on 7 April and was referred for an endoscopy two weeks later, they found a large growth from which they took biopsies, he then had a CT scan and saw the consultant on 4 May to be told the main tumour is between the gullet & stomach and he has several secondaries in his liver. The consultant said average life expectancy was around 12 month but could be slightly longer or significantly less depending on response to treatment.
He was admitted to hospital on 13 May as unable to swallow, he was very ill and the first week I really didnt know if he'd come home again. He was in for nearly two weeks - they couldn't fit a feeding tube, put a picc line in and he was having TPN, they then fitted a stent and he had his first round of chemo before being discharged. He has recovered from that crisis amazingly although he is still easily tired.
The cancer is her-2 positive so he is on herceptin & cisplatin (3 weekly IV) and capecitabane (twice daily tablets). He had the 2nd round last Tuesday and apart from being very fatigued on Saturday so far he has coped with it really well.

He is a generally positive person and seems to be coping with everything OK. I'm not and am falling apart. I was OK, but the last 10 days I just can't stop crying. I went to see someone at the Maggie's Wallace centre today and she is referring me to their phycologist. I have no idea what to expect or whether it will help. I just know I need to do something.

I'm so sorry you are both going through incredibly tough times.
If there is a wait for the psychologist appointment you can always phone the Macmillan support line which is open 9am - 8pm Mon - Fri & they have an online forum too:
www.macmillan.org.uk/information-and-support/coping/getting-support/talking-to-us/index.html?gclid=CJ-X8qWHu80CFfUV0wode24Iag

It's terrible isn't it. My dad is suffering too and I feel helpless!

Thanks, I don't know that the helpline would help - talking about it just makes me cry more.
I don't know what the phycologist can offer me, but logically I think if they weren't helping people they wouldn't bother - so hopefully they can help somehow.
I just feel so lonely, like I've lost him already even when he is right next to me.
We've only been together a few years, and got married 1 June which we'd decided to do at Christmas and booked just before he started feeling unwell, so nothing about the wedding was really planned or what we'd wanted. Even the day before I didn't think he'd be well enough to go through with it.
All my expectations and hopes for the future have just been taken away, and I need to make the most of now, but I just don't know how to.

I'm sorry op. My husband died last year after being diagnosed with terminal cancer 4 years before. That initial time when you find out is very very hard. I couldn't stop crying for a long time either. I'd wake up every morning and for 30 seconds everything was ok. Until I remembered. And then it started all over again. I feel that I had done the majority of my grieving through that stage than any other stage. I didn't see a psychologist, but those no harm in doing so. It may help you. Just so you know though, how you are feeling right now is very normal. Its a reaction to a very huge trauma. Feel free to pm if you want to chat. X

Thanks Dancingdinosaur,

and sorry about your husband.

The drop in support said yesterday that it's natural, and I understand that and know that I am grieving.
It's just that I know that takes time (my 1st husband and I split - his decision - and I went though a grieving process then) and a massive part of me feels like I need to do that later, not now when he is still here, otherwise I waste what we could have now. But I don't know how to do that, and perhaps I can't and I have to go through this grief now, but it just feels like such a waste of the time we could have together now.
It's just been such a shock, and the hospital crisis, and getting getting married but not feeling like we are because everything has changed, and our relationship has changed, and his needs are so different. And all that has happened so quickly, with no real idea of how quickly everything else will go.
He has a consultant appt next week and hopefully soon will has a scan to see how the chemo is working.
I guess I just have to live through it the best I can.

I think you're right chasingsquirrels. You have to live through it as best you can. Its not easy. You can't really delay the sadness until later. Well some of it you can, but I think thats only to some degree.

I think the best you can do is try and create memories that you look back on and feel happy that you both did it that way. Push yourself to do it where you can, but on the really bad days give yourself a break as well. Much will be dictated by how your dh is feeling. Most of it was in my case as dh was the one who was physically sick.

My dh wrote a bucket list and I spent time trying to help him achieve that. Not all of it got achieved but I'm so glad looking back that some of the big things did. We did have fun and laughter amid the sadness. Bittersweet, but I'm glad I have those memories.

I feel like I am retreating into myself to protect myself, I am distancing myself from him because it's just so painful. I can't stop thinking about it, and moments and things doctors have said over the last couple of months keep replaying over and over in my head. It's just so all consuming and yet amongst everything he is currently relatively well and if I wasn't such a mess we could be making something of this time.

I know, I felt like I distanced myself a bit as well and I had to make a huge effort not to. You need to try and keep talking, it does help. I couldn't stop thinking about it all, I still do if I'm honest, but that lives alongside me now rather than being all consuming.

Thanks for posting, I do appreciate it.
Last night and this morning were bad, but this afternoon and evening I've been a bit better. DH went out for a curry and I've been relatively calm and not cried and felt a bit closer to him when he got home, I've barely been able to look at him the last day or so. But we've chatted, and had a cuddle - which I really miss.
One day at a time.

Yes. Totally. One day at a time. I'll second that. The odd glass of wine here and there helps as well!

I'd improved since I posted, went to see the cancer support clinical phycologist last Monday and was feeling relatively okay. He said he didn't think I was clinically depressed although I was obviously very sad. He suggested he could do some mindfulness sessions with me if I felt I wanted that, or put me on hold but as he'd seen me he could then see me again at shorter notice if I needed to in the future.
Tbh I don't hold a lot of hope in respect of the mindfulness but I need to do something, so we are starting that tomorrow.
We had a party to celebrate our wedding last Sun, at the end of DH's last chemo cycle. He started the current cycle last Tue and it's so hard seeing him affected by it.

This week has been really tough for me. I feel so lonely and I miss the relationship we had so much. I'm struggling being at work (professional office, all my work is on his clients), I'm struggling with my kids.

It just all feels so crap and the one person who would normally be there for me when things are crap is DH, and he's got enough to cope with himself without me falling apart - but I am anyway.

Sounds like you are doing everything you can to help yourself with the mindfulness sessions. Is there anyone who will help out with the kids to ease the load a bit?

It's more coping with the kids emotionally - feeling like I have nothing to give them. Physically it's not like they need much, they are 13 & 10 so they are able to help. They are with their dad a couple of nights a week, and my eldest is away on activities week this week.

Work is another matter, I don't think being there is doing me any good at all, but when DH feels well enough he is going in.
I feel I can't just give up, I'm mid 40's so lots of working life left and if I stop now who knows how long this will be and how difficult it would be getting back into it, and it's going to be a lot worse than this at some point and I'm likely to need to take time off then, not now.

I'm pretty insular, and while I have a few close friends - who I've made since the kids were small, we've seen each other less as the kids get older. Plus they have their own lives and problems, and I feel like I don't want to intrude just to lean on them. That's almost certainly more my issue than how they would be, but still stops me reaching out.
I've spend a lot if time over the years with my closest friend having supported me through my exH leaving and other stuff, but she has more on her plate now and has her own health issues and I don't want to take from her as she'd give but I don't feel she necessarily has the capacity. And I know she'd hate for me to be feeling like this.

I've also got almost all of my emotional needs from DH over the last few years, and it feels like that's just been pull from under me.
I know making friends needs to come from me - they won't just appear, but I don't have any capacity for that right now.

The physiologist says the mindfulness helps you to centre more on the moment, to stop your thought rushing ahead. Part of me thinks that the moment is so crap that why would I want to centre on it, but in lots of ways the present isn't actually that bad, DH is mainly ok apart from the few days of after chemo affects, but all I can focus on is the prognosis and what's going to happen. So maybe the sessions will help me with that. I hope so.

Please speak to your friends. I have friends who I don't see or speak to for ages but we all know we are there for each other. I would hate to think any of them felt I wasn't there if they needed me.

I hope your dh is doing well. I try to be like the dog in this cartoon. Life is hard. Thinking of you xx

I saw the psychologist this morning then went round to a friends.
I'd been thinking yesterday about how lonely I feel, yesterday morning was ds2's sports day and I'd chatted with one of the mums I know from ds1's year and it helps. I know my friends would be there, I know it's my issues stopping me reaching out - I need to do so. I talked to the psychologist about this a bit this morning, he said said how I'd want to help if it was my friend, and I know I would. I've been to see a friend today and I know it helps, we talked about about reaching out and supporting people, and not wanting to intrude - from both sides.
I want my DH to meet my emotional needs, but I know he can't atm and that's not his or my fault, it's just what it is. Lots of problems in relationships you can talk about and work out and fix, but the underlying issue here can't be fixed.
I need to find ways to take some enjoyment from the moment and from the days he is okay. I think part of that is recognising that I can't get some things from DH now, and so I need to get them elsewhere.
It's hard, partly because I don't want to, partly because I want to spend this time with DH not with others. But if spending time with others leaves me in a better frame of mind to spend time with DH then we all benefit (apart from my friends who have to put up with me!).
The mum I was chatting to at sports day gave my ds1 a lift home today, and came to the door with him to say if I needed to chat, or wanted to go out for a drink or wherever just call or text her. I've known her for quite a few years, but only in a pass a few minutes at the school gate kind of way, she didn't have to say anything today but went out of her way to do so. I need to make myself accept offers like this.

I think its worth making yourself accept offers from your friends. Building up a support network really does help, although I understand you want to spend all your time with dh too. But the support from others is really valuable. Are you working full time or part time? I had to go part time when dh was ill as there were so many hospital appointments, but work were really supportive with that too. Its good to accept help from others if they are offering, you'll find it often comes from the most unlikely places, but over time you'll come to rely on them more and more. So don't try not to shut willing people out.

So sorry that you're dealing with this .

Sounds like you've had lots of time to reflect (in a positive way). You are so right about reaching out to people! People will want to help but probably won't be sure how to or even know if you want support from people you're not close to.

It sounds as though this mum has already met you half way so grab her offer with both hands. It's very insightful to realise that if you lean on others, you will be in a better place to support your dh.

Much love xx

You are both so right about taking people up on the offers. And I think the offer today was way more than half way! And totally unexpected.

I'm part time, 25 hours over 4 days. I recognise I am really struggling with work for a number of reasons, not the actual work itself. A lot of it is that we work together so work isn't the "break" that it could be in other circumstances. I'm not sure what to do about that at the moment so I'm taking it as it comes.

This afternoon / evening has been better, and I recognise a lot of that's because I've talked to other people today (the phycologist and then my friend) and have then had the capacity to give more of myself to DH and my kids. We all went to the pub for tea, and later DH and I walked down to collect Ds2 from his school disco.

Day by day.

Thanks xx

Me and dh worked at the same place doing the same job too. In some ways it helped as work could see what was going on as people knew us both personally. And when I needed to take time off they were understanding about it.

Day by day. Keep going xx