Storm Part 3 (for partners of people with cancer)

[Willowkins]

Continuing the thread, mostly supporting partners of people with cancer - just in case it's needed.

The previous thread is here

[Title edited by MNHQ at OP's request]

Thank you. I think it’s going to take a while to sink in.

So sorry @Hisredipad you did him proud, don't ever forget that.

So sorry @Hisredipad you did him proud, I hope you have a good support network for you now

I've had a report today that concludes that my husband was failed by the local hospital when he presented with signs and symptoms of a DVT, had he been scanned then the DVT would've shown, if he'd been taken seriously they may also have found the PEs that were later discovered. Had all of that been found and treated he may not have had the stroke that disabled him so much and put an end to his chemo and meant he was no longer considered suitable for a trial he had been accepted on. Not sure how I feel. Seeing it in black and white was hard.

It must be yes. If you can sue them then do so. They aren’t doing their best and he suffered.

@CopperSeahorses that must be so difficult. Now just to take on board, but to decide what to do now. Are you being pressured for a decision or can you take your time?

@CopperSeahorses did they say why they didn't do the scan? It might not have changed the final outcome but there was hope and there was trust, both gone.
At the very least, I'd want to know those doctors had learned from this.

It doesn't say why the scans weren't carried out, I know he was told that the hospital would only scan one leg as that was their policy. DH had symptoms in both legs, he had raised d-dimer (it was over 10000) and troponin but no scan was carried out when he went to A&E as it wasn't deemed necessary despite the fact that he'd recently been on chemo which was a known risk factor. It was all mid lockdown so I couldn't be with him when he went to A&E so there might be some confusion over what was really said and what he understood of the conversations he had with the doctors that night as he was alone and scared (and he was a man who rarely felt scared about anything but he did that night, he found it all very hard to cope with on his own). They just told him he had neuropathy and gave him gabapentin for the pain.

I want to know that next time someone presents as he did that it will be taken seriously.

@CopperSeahorses I think the fact that this happened in lockdown complicates things. You don't know whether you're fighting for better guidelines for treatment, better support for vulnerable and stressed patients, or even better support for staff working in difficult and unusual conditions. Or possibly all three.

In your shoes I'd probably want to know that all these had been seriously considered and improvements made. It would be easy for them to blame it all on lockdown and I wouldn't be happy with that.

I've been dipping in and out of this thread, mainly reading posts but I contributed under another username back in the summer.
DH died late August after a four year battle with lymphoma.
It's his birthday coming up next week and I've started waking up with the constant anxiety in my belly again (this was the case for the first couple of months after he passed)
It's almost like the body remembers the trauma before the mind has a chance to wake up. I hate it.
DH was buried overseas as we had lived all over and that's where he grew up and his family all live there. I sometimes regret making that decision as I haven't been able to visit him (visa issues). But I'm booked to go next week and will be there for his birthday. It would've been his 40th, so a big one. We had lots of plans for it because he never accepted that he was so poorly, he was 100% sure he would get better.
I don't know how I will feel when I "visit him". At his funeral I felt like I was just kind of floating through it and was convinced he wasn't actually there anyway. I want to feel a connection to him. But on the other hand I'd be happy not to because he's so far away from where I live.
It's all such a jumble.

Hi @watyawant grief is so complex - I definitely think it's a mix of emotional, mental and physical responses. For me, it still affects my sleep whenever I'm triggered.
I believe it will get better.
MrW's fervent wish was to have his ashes buried in the church garden about 2 miles away. I visit occasionally but it doesn't bring me any comfort because it doesn't feel like he's there. I go to place we both loved instead.
It's good to know that you are visiting his resting place next week and I do hope you find peace.

Grief is such a muddle isn't it, I agree with Willowkins about visiting a place we both loved, I always feel closer to him there. I hope you find some peace in your visit 🌹

I went with mum today to the supermarket and as it’s was so cold was wearing my bobble hat and wrapped up in my big coat, almost bumped into DH’s friend who is a very sensitive soul and side stepped them realising they were engrossed in choosing butter and I wasn’t really recognisable.

felt awful but didn’t really want to engage, is this normal?

@Hisredipad i don’t think there is a normal anymore. I did find myself avoiding people and crying a lot the first few months. Well done for getting out, especially in this weather.
i kept a few of dh’s warm fleeces and have been wearing them in this weather. In some ways, it feels like a hug.
I’m still struggling, it was exactly this time last year he was given short months to live which I’m finding difficult to process still 😕.
Somendays I’m fine and others not. It’s a lot to deal with, especially if the lead up was traumatic.

I’ve worn most of his Christmas presents, T shirts, fleeces and a dressing gown I bought him. Will not be owning up to that to anyone else, also got my eye on some of his socks, this morning I tried on his sketchers slip ons as we have same size feet and wonder if anyone would notice.

it’s just silly things that set me off today, turned an aisle in the supermarket and thought I’ll get DH his favourite biscuits and mum made apple crumble which is his favourite and I don’t eat but had a bowl for him.

@Hisredipad I've kept some fleecy bed socks too. I was wearing some earlier over my socks. I also find it quite sad when shopping & realising there’s no point in buying some of the things I used to as I’d never be able to eat it all myself 😔.
I’m saddest about losing the future I could have had and having nobody to really go on holiday with now.
Friends said they would take trips with me but they have their own partners and it won’t be the same but will gladly accept if they are interested

Firstly, you don't have to give your time or emotional energy to anyone you don't want to.
To answer your question: is this normal, I have PTSD and certain situations, places or people can trigger an emotional response. Avoidance is one of the symptoms (along with panic attacks, snapping at people, flashbacks and intrusive thoughts).
This is is all a normal response to the trauma associated with caring for someone with a terminal illness.

@Hisredipad glad you're keeping the clothes I'm two years in and I still wear DH's dressing gown and T shirts.

I don't remember whether I've shared this already here but I got (and still do) a lot of help from this Facebook group run by Julia Samuels https://www.facebook.com/groups/griefworks/. Members vary from recently bereaved to a few years in and are very honest about sharing their struggles, it's a good place to understand what 'normal' looks like, to share coping strategies or just to vent. If you do Facebook it's worth a look. People tend to stay on there for a long time so you also get to see them slowly finding some joy in life again - I can't say it's happened to me except in brief flashes but it helps to know that it's possible.

Take care everyone.

I think I’m very lucky that we did lots together as I had a major illness and after that we changed our lives and we travelled and spent pretty much every day of the past fifteen years together and it’s all those memories that I will cherish.

Thank you I will look into grief and the Facebook group because I want to be sure I don’t slip down a huge hole. DH was pretty adamant I should have a good life if the worst happened. I’ve not done a lot these past two years and have a whole lot of things I want to do.

I have a hobby that has a lot of solo holidays that I would be happy to do and not feel I’ve gone without DH so I may well book one of those soon. I did one with a friend once a few years back but I think I’ve confidence enough to go alone.

thank you for all your advice, it’s stuff that no one who’s not been there before can really comment on and with it all here I can browse it at my leisure and pick up on bits that resonate with me xxxxxxx

What did you do about messages from people you’d never expect to hear from?

My male cousin is friends with the DH of an old friend who when DH and I announced we were getting married declared that I couldn’t as it was disgusting about our age difference.

we drifted out of contact due to that, I don’t believe her DH has any idea of the reason of the drift in friendship but she’s form for gaslighting, not seen or heard of them for 13 years.

shes the sort to turn up at the funeral and declare she was only chatting with me last month! Arghhhhh

I've posted this before but I have a wonderful friend who made it her job to appear at my shoulder and say: so-and-so is hoping to have a word, and then guide me away at times of stress.
And it was needed - there were a number of people at the funeral who were crass and hurtful.
She also had many cans of gin and tonic in her handbag

Feel free to message me if you want. My DH's cancer was missed three times and at each of these times it was cureable by keyhole surgery, I had a 29 page report from the nhs apologising and outlining the errors.

I set up a WhatsApp group a few months afterwards when I was sat in alone again on a Saturday night, I added any of my single friends and popped things in there that I wanted to do - cinema, theatre, quizzes etc and people joined in where they wanted. One of theses has become my 'holiday partner'

My DH is sprinkled everywhere I go that's warm ! He loved holidays so she's sprinkled far and wide

Thank you, great idea, I vaguely remember the queen did something with her handbag to indicate she was ready to be rescued. Must go look it up.

sorry didn’t make it clear in my post, ex friends DH has sent me a message as cousin let them know DH has passed away.

Sorry to be clogging up the post but I’ve decided that funerals must be like weddings for bringing out the worst in people when they should be mindful of the bereaved.

My brother is insisting he be allowed to view DH’s body. I’ve seen him approximately once a year for the past thirty years. He lives 20mins away from me and I’ve tried to have a relationship with him but he’s always far too busy doing other things to join in family gatherings.

he’s gone and got the mega ump and is calling me unreasonable as apparently he’s seen all the passed on relatives (including some we were no contact with apparently).

if you saw this on Corrie or Eastenders you’d be wtf, I can’t get my head round the fact that this is real.