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DH's cancer progression - DH has died [title edited at request of OP]

726 replies

Chasingsquirrels · 07/02/2017 20:44

DH was diagnosed with cancer of the oesophagus with liver secondaries last sping.
He was HER2 positive and had initial chemo then continuing herceptin.
It was very rocky post initial diagnosis - his throat closed up completely and he was hospitalised following a failed attempt to fit a feeding tube, was fed through a PICC line for a week and then they managed to fit a stent.
He coped well with the chemo and the results were quite positive with the liver nets reducing quite significantly and being held by the herceptin.
In the autumn he has a scan following a period of sickness and the main tumour had grown. He had a second stent fitted and then had radiotherapy.
He seemed to be recovering in January but then had a further period of sickness and another scan 10 days ago showed the liver mets have grown and tumour nodules in his lungs.
The consultant said 3-6 months at this stage, with the possibility of second line chemo which if it works could add a few months to that.
DH's general health has gone downhill rapidly the last few weeks. He is very tired, but unable to sleep for more than an hour at a time, has severe pain episodes and underlying general pain, plus tinnitus from the chemo. He has lost a lot of weight.

I've made the decision to take a leave of absence from work, and have been spending the last few days handing things over.
I feel so conflicted about it, he is my direct line manager and to a large extent I've been doing part of his job as well to enable him to keep working which he wanted to do. I'm utterly exhausted and just can't do it anymore.
He has also accepted that he has to stop now.
I don't want to just give up, but I feel I have to spend thus time with him.

I have no idea what my future holds.

OP posts:
Chasingsquirrels · 10/05/2017 17:18

WAY seems to be mainly a forum, with various topics plus area groups which afent that active.
There is then closed Facebook groups, not set up by WAY but by members, I've joined the overall one and the local one although I'm not a Facebook user so have NOTHING on my page.

The WAY forums are pretty quiet and slow moving (compared to MN!).
I've posted an introduction and have replied to a number of recent introductions and have been chatting a bit on one of those threads.
You can also see other members, by distance. I'd looked at that and then a couple of days after I joined a new member appeared just a few miles from me, so I sent them a PM. Had a reply and replied back but not had anything else - and not sure whether to PM again. Plus they haven't posted at all in forums or updated their info. Very local, also recently widowed and similar aged-ish kids to mine. I think I'll leave another couple of days then message again. Hopefully can't do any harm?
New members seem to be a mix of recently widowed within the last few months and widowed 1/2/3 years ago and just joining. Plus longer standing members who stay involved.
There does seem to be meet ups but just organised as and when by individual members. Plus some overall events - every area has a Big Picnic coming up, and holidays etc. But nothing like weekly meetings.

And work - is okay and hard. I've posted on Juan's thread about it.

OP posts:
TheWorldHasGoneToCake · 10/05/2017 20:45

Hmmm that's a bit of a shame but then I guess widows have a lot on their plate by the very nature of it all hence it being a bit of a catch 22. Hope you have some luck with someone to share it all with in person...

TheWorldHasGoneToCake · 13/05/2017 07:51

Just checking in here too. Guess there's nowt wrong with having an evening of wallowing especially if the boys are out. Hope you're feeling a bit brighter this morning!
x

echt · 14/05/2017 00:55

I've been checking out a widows' group too, here in Melbourne and like WAY they have events organised by individuals, though do offer one to-one meeting, which is not what I want just now. Lots of walking groups, too. One good thing is a bi-monthly lunch in the centre of town, so I'll be going at the end of May for my first dip of the toes.

Hope you find something that suits, squirrels.

Chasingsquirrels · 14/05/2017 08:16

Bi monthly lunches sound good, definitely go along and see.
I think a lot is numbers driven, smaller places are naturally going to have a smaller pool of any given demo
0

OP posts:
Chasingsquirrels · 14/05/2017 08:18

Not sure what happened then...

much smaller demographic, and where I live in rural with a small city nearby so people in my area are quite spread out.

OP posts:
TheWorldHasGoneToCake · 14/05/2017 13:40

Yes I guess that makes sense. Would it be worth seeing if there's anything in the small city that you can attend? Sounds worth considering. Glad you and the other lady could support each other last night too!

Chasingsquirrels · 14/05/2017 16:09

There probably are things in Cambridge, I'll have to do some googling.

OP posts:
TheWorldHasGoneToCake · 14/05/2017 18:31

Have you been for your weekly feeding up at the parents' house? Grin I wish mine were a teeny bit closer...

Chasingsquirrels · 14/05/2017 19:13

Just here now Cake, they've had friends staying for the weekend who have just gone - so cards now.
Yes, bit far for you just to pop over to see yours Sad.

Couldn't really find much in Cambridge other than bereavement services, maybe that's the way to go. I'm going to message the nearby widow I messaged last week on WAY and suggest we meet up - she can only say no.

OP posts:
TheWorldHasGoneToCake · 14/05/2017 20:04

It does also have it's advantages as we get no practical support but also no interference Wink

That's a shame there's not more going on. Yes, do suggest a meet. Even if she doesn't feel like it now, she may take you up on it in future.

Are you working tomorrow or did you say Tuesdays and Thursdays?

TheWorldHasGoneToCake · 16/05/2017 13:15

Hope work today has been OK. Glad you had a good evening last night too.

All back to normal here! Any response from your WAY lady?

Chasingsquirrels · 22/05/2017 08:47

I had a reply to my 2nd message from the WAY lady after about a week, sent a chatty message back and at the end said if ever fancies meeting up just let me know. She hasn't posted on the forum at all, it has but a bio on. Will wait and see. As much as my friends and family want to help, it is different talking to someone who has been through it.
I've been WhatsApp-ing someone else off the site, and it's just a relief to find someone who gets some of the stuff I'm going through. Much to far away for a meet up though.

It's 2 months today since he died, I thought I'd be more upset at the 4 week mark and wasn't but was floored by the 1 month. Boys are with their dad tonight so I'll see how I am, hopefully will see Mon-night friend.

OP posts:
TheWorldHasGoneToCake · 23/05/2017 06:02

Ah, just checking in here as you seem to mostly post on J's thread.

It's a shame the lady close enough hasn't taken you up on the meet up, she may do yet. Glad the other lady is proving a support even if you can't meet in person.

How did you find yesterday? Did you go out with your friend or have a quiet night? (((hugs)))

Chasingsquirrels · 23/05/2017 07:31

Thanks cake, sometimes I just feel the need to muse here.
Mon-night friend popped round for an hour, I ate properly and then had a quiet night - and ate chocolate x

OP posts:
TheWorldHasGoneToCake · 23/05/2017 13:11

I think it will be useful to have your own record of things as time passes.

Hope today is going OK.

Chasingsquirrels · 27/05/2017 09:16

I've been musing elsewhere and wanted a record of it here ...

It's my birthday. I'm 45.
Ds1 came in earlier to get his phone, sang Happy Birthday to me, asked if I wanted my present (I was half asleep) and I said later.
Ds2 is camping with a friend last night and back in a while. I miss him coming and cuddling me in the morning.
Went to my parents with Ds1 last night, my mum's youngest brother & wife were down, I was given presents to bring back to open this morning. I haven't opened them yet.

I don't want any of it, I just want John. I can't have him, only memories.
I went through the pictures on my laptop the other day and put of load of him on my phone. A good portion were taken around this time of year, we always went away in the UK for a few days in May half term, which always falls on my birthday.

Five years ago we'd only been together a year, and the boys were just getting to know him, we went to Wicksteed Park for the day. John gave me a bracelet made of little sliver loops, like a sweetie bracket. I loved it and have worn it pretty much every day since.

Four years ago we were in Redditch. We went to Stratford and West Midlands Safari Park and Shakespeare places. John brought me a silver necklace I didn't really like and we tried to change it, but I couldn't find anything else in the shop I preferred. I hardly wore it, then when I lost weight a couple of years later it was a much better fit and now I wear it every day.

Three years ago we were in Canterbury for a few days. We went to Margate, and an animal place - Howletts I think, and other things I can't remember. John got me my bike, and I'd already had it a week or so before my birthday. We were trying to get fitter and planned to cycle a bit, we'd do a circuit a couple of times a week but only if the weather was good, and we stopped over the winter.

Two years ago we had been staying in Chester, we went to Chester Zoo (which was my childhood fondly remember zoo, and quite a let down), walked the walls, took my uncle (who had downs syndrome) to Anderton Boat Lift. We went to Styal Mill on the way home on my birthday. John gave me a card with this badge attached and insisted I wear it, it's been clipped onto my bedroom curtain since then. Just realised I don't seem to have many pictures of the Chester trip. I've been racking my brain to think what he gave me, and have finally remembered it was my watch, my old one was well past it's best and we spent a couple of hours wandering round the Chester shops not finding one then a few more hours that evening in browsing the Internet until we found one I liked.

Last year he sat on the sofa and slept a lot, having just got out of hospital on 25th and going through the post chemo dip. Ds2 got a box of my favourite chocolates with his dad for John to give to me. I didn't think he'd have long, I didn't know if we'd still be getting married on 1 June, I was petrified of what the future held.

This year, I'm in the future, and John isn't.

While I'm typing this my phone has pinged with birthday wishes a few times, my SIL, and a couple of colleagues who have been so supportive. My mum messaged me earlier. A couple of relatives yesterday as today they won't have Internet access for various reasons. And the only person I want to be saying it is John.

I'm going out for a meal with my friends this evening, I'd decided it was a good idea, and it will be but I'm not sure how I'll cope. I'm struggling at this point. Maybe typing and thinking about the above has got some of it out.

OP posts:
SelenaValentina · 27/05/2017 11:54

Flowers Happy Flowers Birthday Flowers

People say the 'firsts' are always the hardest. You have some lovely, heartwarming and maybe funny memories of your birthdays and thank you so much for sharing them.

This one is different.

If you can, go out this evening: see how you feel at the time, good friends will understand whatever you decide. Flowers Happy Birthday Flowers

TheWorldHasGoneToCake · 27/05/2017 20:01

Just here to say hope that your evening goes well. Also glad that you have some solid memories to hang on to. I'm rubbish at stuff like that...maybe because we do stuff like buy each other trainers and baking stuff and yoga mats.

Sending you and extra hug and slice of Cake

Chasingsquirrels · 28/05/2017 00:21

I had a lovely evening, with my lovely friends. I'm so glad I have them.

I'm glad I have here, and the other thread, as well.

OP posts:
echt · 28/05/2017 08:41

Happy birthday, squirrels.

I've just come back from widows' lunch, and very nice it was too. While the length of widowhood varied from six months to four years, what I found striking was the circumstances. The overwhelming majority had their husband die out of the blue, often quite traumatic, and even those who had cancer, had an illness that lasted mere weeks. The women were aged from about 50 to early 60s. So many happy dreams of retirement and travel just blown away. Sad

All were chatty, only to glad to speak of their husbands, very open, and ready to listen. Out came the phones with pics of the man. Very moving. Lots of amusing and Shock stories of the stuff that happens to as a widow, i.e. not getting invited out any more. Stuff you miss, even the annoying stuff.

I'll definitely go again.

Chasingsquirrels · 28/05/2017 09:54

I'm so pleased about that echt, I think sometimes you just need to share with those who "get it", because while others can sympathise I think k that sharing of emotions with people who have been there is a different thing.

The WAY forum here organise an annual big picnic, with all the various local groups holding a picnic in a public place over the same weekend. I didn't go, but have set up an event at a local National Trust place in a month - just a wander round then maybe coffee & cake. A few people have signed up, mix of men and women, some bringing children and some not. There isn't any kind of monthly meet up, just what the members organise.

I'm also messaging someone else off the site whose spouse died last Oct, and finding that very helpful in terms of sharing emotions. Unfortunately they are the other side of the county so no meeting up - but maybe that's allowing us to be more honest somehow, sharing emotions that the other understands but anonymously.

I went out with 4 friends for my birthday last night, 2 I've known since my eldest was tiny - baby group friends who became real friends, and 2 whose sons ds1 was at primary with - 1 whose son moved school 6 years ago but who I've seen around at things and who has just been amazing at times of crisis in my life, and 1 whose son was best friends with my son for a few years and we keep in touch even though they have drifted apart.
We had a lovely evening.
I find friendships and people quite difficult (me not them) and I am lucky to have these friends in my life.

OP posts:
TheWorldHasGoneToCake · 28/05/2017 18:29

That sounds lovely Echt

Hope your WAY meet is successful, I'm sure it would be great if you could build up a support network locally too.

TheWorldHasGoneToCake · 01/06/2017 06:12

Thinking of you and your lovely John today. Hope the day is peaceful.

Flowers
organixeveryday · 01/06/2017 06:42

@Chasingsquirrels I'm in cambridge and have had quite a lot of contact with cancer services and bereavement stuff here recently , pm me ?