What will the future bring?

So, I’m sitting here early in the morning, about to have a bath, thinking about what has happened to me in the 7 months I’ve spent at home, after my husband died in my arms on September 15th 2020.

There are far too many ifs and buts and why’s and why nots. I feel like my life is a tangle of unanswered questions. Some will resolve in time, but there are others that I desperately need to get answers to.

These are: why was my husband offered no treatment at all for a very serious form of brain cancer - in the entire world, there are many cancers but there are non that cannot be treated. The implications of that are that, at least, the patient is given hope, whereas my husband spent 3 weeks losing all hope whilst slowly but surely he became paralysed. That was a terrible thing for him and for me to watch. At least I got him home for 12 precious days at the end of his life.

That was awful for me, because for the last few days I had to guess what he wanted. I went to sleep at 10pm, got up at 2pm to check if he was OK, and then I’d have to struggle to understand whether he wanted eye drops or ice to suck, because ‘eyes’ sounded the same as ‘ice’ when he said it. I got that feeling you get when you are trying to nurse someone - I’d been a nurse during my time at uni - and you feel a wave of frustration and anger at the patient, but as that happened I realised that I could feel neither for the man I adored more than I’d ever thought would be possible.

In that instant, I forgave him for all the rows we’d had, the rows over silly things, the arguments over serious things, the disagreements about money, his decision to buy a large house that we both regretted months after moving in…

But I don’t think I’ll ever be able to forgive the NHS, because they let his life leak away for 3 weeks, as they fumbled and stumbled and forgot somehow to care care of their patient - my husband, my beloved soul mate. He needed hope, they wouldn’t even give him that. We asked for palliative care, the ward registrar said she’d do it now, but she forgot.

Oh, dear. It’s not a nice predicament to be in.

Take care and blessing to all of you in the same predicament.

Christie xxx

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Hi Christie
So sorry for what you have been through, I had & still have the same feelings about my husbands care.
I did get some answers by contacting PALS, I didn’t want to lay blame but wanted answers & highlight some terrible instances. I still feel if he had got care quickly enough he’d still be here & that’s hard to live with.
It took nearly 12 months to be able to send the letter but I’m glad I did. It doesn’t change things but putting it down on paper got it out there & I did get some answers & apologies, hopefully lessons have be learnt. Nothing can ever bring the love of my life back but perhaps another family may not have to go through what we did.
He passed away just before Christmas 2019 & then we had Covid & the hero worship of the NHS. I know I’m being bitter but I just want to scream when they go on about them all being heroes, no they’re not!
I’ve still got one letter I need to write it’s gone passed the 12 months for complaining but I need answers from the GP. He was having regular appointments how could they not see what I could? Why when I called them to our home did they not even check his vitals. Why did they call a non emergency ambulance that took 7 hours to arrive? When the paramedics checked his vitals they said did he realise he had low blood pressure, he was being treated for high blood pressure! From a phone call to the doctors at 8:30 in the morning he was finally seen in hospital close to midnight. Following various tests we were told his kidneys had ‘packed in’ as they put it. My darling husband said to me “I hope this doesn’t mean I’m on my way out” I said “Of course it doesn’t they just need to sort them out” I didn’t think for one minute that he was dying, it was a non emergency! 4 days later he died, we couldn’t get him home when we found out because they couldn’t move him. He died in hospital the one place he didn’t want to be, he hated them.
I don’t know how we get over something like this & it tortures me everyday, my heart goes out to you & anyone else who has to live with that hurt, not only of your soulmate passing away, but the thought of it could have been prevented.
Take care
Jo x

Oh Christie, what a horrible time you have had, I’m sure he should have at least been offered palliative chemo, whether you accepted it or not would have been down to you, and it’s unforgivable that the registrar forgot to arrange palliative care, you should write down your concerns and send it to the head of your hospital trust, I know it’s not going to make any difference to you, but it might stop it happening to any other family, sending love and hugs Jude xx

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Dear Christie,
It’s so sad reading how your husbands illness was mishandled and I empathise with the predicament in which you find yourself. Losing the love of our life is the most painful of all experiences but for some of us the overwhelming loss is compounded by circumstances.
Fumbling and stumbling is an apt description for many parts of the NHS and the sad thing is that it often comes down to people not talking to each other. So many outcomes may have been different, most importantly for those being treated but also for families left to pick up the pieces. Despite this country having made huge advances in diagnostic techniques and treatments, many of these are left to the discretion of medical professionals who in some cases are unaware of their own fallibility. Both at GP and at consultant level it can be the luck of the draw who is allocated to care for us. Some win, some lose.
Sadly during this pandemic scrutiny of professional standards at all levels has been suspended and that is to the detriment of us all. This has not been helped by describing all NHS staff (good and bad alike) as heroes. Daring to criticise is seen as vindictive and self seeking. I actually found the sight and sound of my neighbours clapping and banging lids (?!) every Thursday last year excruciating. For them my husbands sudden (but avoidable) death in November 2019 was ‘ one of those things.’
I think apologies to many families are often forthcoming but whether anything will have been learned is another matter. It is the loneliest of journeys seeking answers and the closing of ranks is never more apparent than within the medical fraternity. It has always been suspected as being a hard task but only personal experience reveals just how frustrating, exhausting and relentless that task can be.
I am so sorry you find your yourself in this saddest of predicaments.
Jobar x

Dear Jodel712,

Reading your post about your husbands care has resonated with me and I’m sure others on this forum. I am sorry you find yourself here.
My husband died suddenly in November 2019, shortly before your husband, and just before the pandemic took hold and seemingly before the NHS had become overwhelmed. Not one of the staff I encountered that fateful evening in the hospital where my husband was taken following his collapse was ‘heroic’ and that fact has been acknowledged. Eventually, after much letter writing and a zoom meeting it was agreed that they ‘had failed to meet their usual high standard of care and that lessons would be learned.’ Given that very few people have been allowed over the threshold of the hospital since covid took hold it is impossible to prove otherwise. I just have to take their word. Hmm!
On the subject of blood pressure control I have since discovered just how haphazard a condition it is when it comes to GP care. There are guidelines they are encouraged to follow but they are discretionary guidelines not directives and are only as good as the person who implements them or in some cases doesn’t. How it is diagnosed and monitored is subject to the expertise and indeed interest of the doctor on the day. I now know it is a far more complex condition and not at all the routine complaint it is frequently seen as. Other than a diagnosis of mild hypertension at the age of 60, my husband had no other ailments. Like your husband, my husband was supposedly being monitored and medicated appropriately. Sadly the underlying cause of this hypertension was only discovered after his post mortem. (I still can’t believe I use those two words in relation to my husband). Had the guidelines been followed at the point of diagnosis rather than left to the discretion of the doctor I have no doubt that his fatal cardiac arrythmia would have been avoided. He had a congenital valve malformation which should have been detected but wasn’t. So hard living with what could have and should have been done.
It is every bit the daily torture you describe and I’m sorry you are continuing to suffer. Thinking of you. Jobar x

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Hi Jobar,

You actually have at least one if not two options that are open to you. You have made a great deal of progress in getting that statement from them. If you approach the Health Service Ombudsman they will let you know exactly what should have been done and when. The next option is litigation, in which case you should contact AVMA, https://www.avma.org.uk.

Nothing with bring your husband back, but the one thing that makes the NHS listen is when they are asked for appropriate compensation - money. So very sad, but also true. Please DM me because this actually happened to us as a couple 10 years ago.

Christie xxx

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Hi @Jodel712

Everything I said to @Jobar I would also say to you.

Take care, my fellows. It’s a long and lonely road, we are all different, please do what feels right for you.

Christie xxx

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Hi @Jude28,

I have done all that. I have been waiting since before Christmas for a reply.

Christie xxx

Hi Christie I lost my husband to lung cancer 3 weeks ago and I am sat in bed wondering where I go from here. It is so hard to watch someone you love who was once so strong and active disintegrate with their illness in front of your eyes . I nursed my husband and held him as he died. I have to keep thinking of the man before the disease took hold as there are so many painful memories. I have friends but I am cutting myself off which isn’t a good thing. Have you any counselling to talk things through?

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