Dead woman walking

Thanks to both wesurvived and PTP - I agree that the likelihood of anything beyond a complaint being registered will be unlikely - but I might do it anyway when I have a bit more strength as if, as I fear, we are not the only ones to have suffered because of this, perhaps at least there will be a cumulative impact. I also have been feeling so strange physically since my husband died just over a month ago - I know its normal but the constant exhaustion and mild nausea has surprised me.  I have been reading more about the physical effects of grief which is helpful and I feel lucky that at least for now I have no problems sleeping. I wondered if others have also had similar experiences.  I have also had to start back at work and my immediate boss is being very demanding although he is well aware of our family situation. My patience is wearing increasingly thin with him particularly has he was off for half a year for a family health issue which has since been resolved during which time I covered for him 100% even while my own husband was so ill and we were all under such a lot of stress. No solutions to this one I fear and cannot even contemplate looking for another job right now...

I spoke to a senior Nurse on my Husbands last day. I was called in early that morning to say he had taken a turn for the worse. I mentioned a locum doctors incompetence the day before he was admitted to Hospital . All she said was that I had to go on some Forum to put in a formal complaint , but as I was in shock and had no idea that my Husband was just hours from dying. She wasn't at all helpful. But then I was led away to go along to Intensive care , Thinking they were putting him on a ward , but that wasn't what was happening. They put him in a room which must be used temporarily as patients are dying. The Hospital weren't very communicative with me . When I had asked what was happening with my Husband's treatment or what was wrong besides his Lungs / respiratory difficulties they didn't divulge anything. Even said that they had to ask my Husbands permission as to what they could tell me They said it was Data protection. I was astounded telling her I had been caring for him and nursing him at home for years . We had just had out 48 th W. Anniversary. Both The consultants we saw previously and our own Doctors had really let him down. And I believe I had too for not pushing for better care for him. I haven't much confidence in the Medical profession now. They are very Complacent at times. Believing they know better .    I understand how you feel you don't feel strong enough to put in a formal complaint. You would perhaps feel better if you did, but it doesn't mean the response will be good or even if you will get the answers or things would change for others.    As for your work situation. It's disgusting that after you covered for your boss when he had problems , even while your husband was very ill. and he now is being demanding now you are back at work. I understand it would be difficult timing to be looking for another job. but it might be better and perhaps find a less stressful job. You could just look out of interest in case anything good comes up . I am lucky in the fact that I'm retired . I really don't think I could have faced going back to work after my loss. I am keeping very busy working in the House and garden though . Which might be helping giving my mind some respite from constantly thinking of what has happened over the last few years. I hope you have some good support . Cx

Hi

Reading this sounds a bit like what I went through with Jay. Now in hindsight I feel that something should have been done but at the time all you want is a good outcome for your partner/spouse. When Jay went through his initial operation to remove his tumour they said it was successful and they had got it all and at that time though you are over the moon that its hopefully all gone. At one of his follow up appointments I asked his oncologist should he not be receiving some post op chemo or radiotherapy just to be on the safe side to get rid of anything that may still be lurking there. I was working on this theory because my sister had previously had very early breast cancer which they were able to treat and after her operation she was given 15 sessions of radiotherapy to maybe zap anything that was maybe still lurking. I was told a firm `no` by Jays oncologist and more or less said if it is not necessary they don't do it and it was just a case of him now making a recovery. Fast forward 5 months to another follow up outpatient appointment where they took blood samples from him and a few weeks later he got a letter to say that his CEA markers had risen and another CT scan was requested which confirmed the return of his cancer. So I feel I was right that he should have got some kind of post op treatment but you put your faith in the professionals and assume what they say is right and that you don't question their decision but there this time now on hindsight I don't think they were right and maybe if Jay did get some kind of post chemo or radiotherapy he might just still be here today but now we'll never know. 

It does go around in our minds again and again. And we have every right to be angry. When you live with someone a long time you get to know when something isn't right. And it really makes me angry that those who have the power to give the treatment whatever is needed to make things right. And like you say Patty. Surely there is no harm in giving that extra treatment to zap anything that might be left behind. And we can't help but want to lay the blame on them. That we could have had more time with our much loved Husbands. That goes through my head constantly.  If only more had been done my Hubby could still have been here. And it's as if something was in your grasp ( as in their extra time with us) and yet we can't bring them back. 

Me too. In Tonys case Im convinced it was the wait at the start, almost 2 months from biopsy to being told what it was. Given it was both rare and aggressive, those weeks might have mattered.

Sadly for Tony, radiotherapy didnt work, he had 25 sessions before surgery and the tumour just kept on growing. They were sure they got it all in surgery and it was the 6 months scan that revealed it had spread. 

We will never really know how things may have been different, but my mind wanders that way all the time. X

Hello Joanna.

I agree with you there with the hospital visits being so exhausting and overwhelming. Every bit of bad news Jay got though he more or less took it in stride and I think I was the one falling apart for him he too took everything they could throw at him for 2 years until his body said `enough`. The anticipatory grief was terrible too I would just go into denial all the time. I knew when he became terminal it was just a matter of time before he went but I refused to believe it and every `good day` he had I saw that as a sign he was getting better but of course the `bad days` outnumbered the good. Its been 3 years for me since Jay passed and I feel things have shifted slightly for me but so much has gone on he has not been here to see and that makes me so sad sometimes. He never got to see the birth of our 2nd little granddaughter who turns a year old next month (October) and the older one started school in August last year (2025) something he wanted to be here for and was adamant that he would be but cancer unfortunately had other ideas for him and yesterday I got our/my car through its 4th MOT and l'm sure he would be proud of me getting his `pride and joy` in roadworthy condition again this is something I still have left of him that and our little dog so in a sense he is still around. It is very early days for you and everything will still be very raw for you just now. Your head will be all over the place with thoughts of guilt, anger, shock and denial to name just a few but we're all here for you and this is forum is a lifeline for most of us and a good place to come to let off steam and vent your anger etc when those around you don't get it because we do and we're a good bunch and support for one another. Just take things a day at a time for now and look after yourself. Best Wishes to you. 

Vicky x

Wow. There are a lot of common experiences here - and a lot of common thoughts and questions. I don't want to upset others (or, indeed, myself) any more than necessary - but I feel compelled to comment further.

First, I guess: I have frequently wondered whether or not my wife's destiny might have been altered had she had some chemotherapy (and/or regular scans) following the initial major chemo- and radiotherapy and major surgery for her primary cancer. But I think I have rationalized those questions by accepting that the medics involved were all doing their best, and acting in accordance with currently-accepted best practice.

However I am still haunted by my wife's final days - or, more to the point, her final weekend. My wife suddenly became very ill on a Friday night - I think, because she must have breathed in some vomit. And, all through the following two days, I was expecting that she might have been prescribed some antibiotics - but that never happened.

My experience is that the response of the health service here in the UK differs radically between weekdays, and weekends. Had my wife been taken ill during the week, I am sure that a doctor would have seen her - and, maybe, things might have different. But since everything went wrong over a weekend, that didn't happen. I won't detail everything that happened that weekend but, when my wife was finally taken to hospital in the early hours of Monday morning, the eventual outcome was that she was put in a room which was very obviously set up for people to die in. That came - and still comes - as a complete shock to me. My wife had been completely lucid and engaged up till a few hours before that point, and neither she nor I expected that she would be dead within hours. And my expectation was that her admission to hospital was intended to treat her - not just to let her die: nobody said anything different.

As I have already said here, I made a written submission regarding all this to the relevant people, and I did have a subsequent meeting with the consultant who (unknown to me at the time) was managing her final care. Who knows whether or not any of that made any real difference  - but I needed to try: if I hadn't have done it, I would have always been thinking that I should have done so.

Finally, I keep writing 'my wife.' Obviously, we are all necessarily - and correctly - anonymous here. But I don't want my wife to be anonymous: her name was Kate, and she was a wonderful person.

I send you all my love and best wishes. What a terrible position we are all now in. But we have to try to keep going - we owe that to the partners we have lost.