Devastating news

Hello All.

My husband died 12 days after he was discharged from hospital 2 months ago. He had a very rare brain tumour which is always ultimately fatal. We were both told that no treatment was possible.
I have since discovered via a charity and networking with medical friends that in fact the tumour was treatable. At best, he could have had more than a year of good quality life. It’s likely that he’d have had at least a few months.
At the time, the ‘fact’ that no treatment was possible was so very hard to deal with for both him and me.
I am trying to process this and deal with it emotionally and also practically. I don’t want the same thing to happen to anyone else. I don’t want to take legal action - nothing can bring my husband back.
I simply want to ensure that the same thing doesn’t happen to anyone else.
I’d deeply appreciate your thoughts.


Hi very sorry about your loss. My husband was diagnosed with bowel cancer 3 days before he died his bowel ruptured. We all knew something was wrong as losing weight rapidly in February had tests etc results revealed nothing apparently was treated with paracetamol build ups for weight loss I pushed and pushed for other tests to be done a week before he died we finally got a scan which revealed cancer in most organs by this time it was to late there we’re supposed to operate and give chemotherapy did not happen I am investigating this when I spoke to the consultant and I have it recorded he started we should have done more tests sooner this would have prolonged his life without him suffering in pain and his bowel rupturing it would have given him and his family more time. This was in March during lockdown so basically I was told Covid 19 was affecting all other treatments I am investigating further. I know it won’t bring him back but like you I don’t want this happening to anyone else it’s a living nightmare. Very sorry for your husband xx

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If you truly would appreciate some thoughts, advice, actually, be prepared for some to be quite negative. It’s not often that I throw advice about…I’m usually on the look out for it. Where you are right now, I can see myself almost 20 years ago going through almost exactly that. Almost, no experiences are the same that is a given. We did not want compensation, we did not want a fuss, we wanted the people involved to learn something from the mess they had made and make sure that it would not happen to anyone else. An apology would have been nice. It took four years of genuinely HARD work, pushing and pushing at doors, trying to get answers, seeing ranks closing, notes getting “lost” to get one doctor to a General Medical Council hearing. Yes he was found guilty. Was it a result? There was no apology. There was no assurance that things would be different. All it did was almost kill the two of us who were doing the fighting… Looking back, I almost wish we had not bothered. The only physical thing to show for it is a box of files and a4 sheets in the attic quite truthfully a metre high.

And there’s the problem.
I would love to tell you it is not worth it… (the effort, that is).
I would like to tell you that the best thing you can do to honour the life of your husband is to find another way to work through your pain, and then think how overjoyed he would be to see you happy, alive and living a life.
BUT … I understand equally that without doing what you might be planning to do, you will literally never rest. It is, as always, your call. Everything is when it boils down to it.
For me, and all these years on, and the other person much dear to me involved in that fight dead this year, all I can think is, and it is this, round and round it goes in my head " What the hell were we doing the pair of us." We could have spent all those hours we wasted - yes wasted -seeking answers to an insoluble problem doing something else. I don’t know WHAT, but not that.
See what I mean. 90% negative. But you will do what you must do. We HAD to, because that is how we felt at the time. We couldn’t do anything else.
I am sorry about your husband.

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Kim5 : before you do anything further, just have a quick look at my reply above please.
March was a pig. Every time somebody mentions “collateral damage” from C-19 I could nearly scream with anger still.
As you say “It’s a living nightmare”. And it still is. I am sorry for you now, and the shambles you and your husband went through back then. One good friend advises that I must see beyond the hospital bits, and focus on the good times. They say this with an expression that really says " get a move on, will you". I’ll see the good times when I’ve dealt with the bad, because right now bad is all I can see. Quite how, who knows. Good luck to you.

Thank you for the reply i feel for myself I have to get answers I would not rest until I do I know it will be a battle my husband would probably say just leave it but I didn’t always listen to him.
Christie it’s so hard I won’t lie we are all different and do what we feel is right for us x

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Kim5 Understand completely. It won’t be easy either way.

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Hi Kim. I am so sorry about what happened to your husband. It seems unbelievable as he probably had the tumour for at least a year. It’s surprising to say the least that tests in February revealed nothing. COVID was just a thundercloud on the horizon - the devastation didn’t start until March. I hope you have someone to help you - there are all sorts of charities that will do their best to help you find the answers and decide what to do. If you decide to litigate then AVMA (google them) will help. Going on what the consultant said, you might not have to fight to obtain the answers. At best, my husband would only have had a year or so. Your husband could have been cured. I can only say that I feel your pain and I sincerely hope you will eventually be able to come to terms with what happened. Cxxx

Hi @Wil58. I’m so sorry about your experience, and the loss of your wife. But things have changed in the last 20 years. There is now a duty of candour that is written into the GMC’s code of practice, and I am not intending to take any form of punitive action, litigation or complaint. What happened to my husband was almost certainly a consequence of the lack of an appropriate specialist at the hospital where he was treated. He had a very rare cancer, but a neurologist-oncologist would have immediately recognised it and either arranged treatment or explained clearly that the disease was so advanced that treatment wasn’t possible. Instead, we were told that treatment was not possible because of the location of the tumour. I am so sorry you had your long battle and I completely understand what you are saying. However, I intend to continue - with expert help - simply because I do not want it to happen to anyone else. I know my husband would want me to do that. Take care and once again I am so sorry about your experience and also because of your loss. Cxxx


Thank you I looked them up I will certainly contact them I’m so sorry we have to be on here sending love x

I don’t know where you are Kim, but to help your investigation, my June was diagnosed with cancer in her sinus (rare) in April and radiotherapy started almost immediately - 23 days. This is at the height of the 1st lockdown and the news was full of people having their treatment suspended. Not our experience. She died of a stroke in June, the radiothrapy was successful. She was scheduled for Chemotherapy for ling cancer too but died of the stroke before it started. I’m in Chelmsford and Covid wasn’t affecting cancer treatment here at that time.

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Christie Understood. You must do - as we did at the time - what you must do. I wish you every scrap of energy, support, expert advice, time , money, good health, resilience and sheer good fortune to get through to where you want to be. You will need all of those things, and more. As for things changing in 20 years. I hope you are right. Very best wishes to you.

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@Christie if you feel up to it I think it’s right to try to prevent another family having a similar scenario if you can help lessons be learned. I think it all depends what you feel up to though.

It could be an experience that helps you too but equally it could be a further drain on your emotional resources. Do you know people who can help you?

So very sorry that there could have been more time together for you and your husband if the right consultant had been there… it’s a torturous thought. Thinking of you and hoping for peace and strength for you to do what you feel is right.


Hi Dave very sorry for your loss. I live in Warwickshire. Mick was diagnosed 2 weeks before March lockdown there were delays with his treatment plan then to late for him before his bowel ruptured and was told he couldn’t be operated on. When meeting with the consultant for answers after his death he admitted treatment should had started sooner then mentioned Covid 19 affecting treatment plans not something you don’t want to hear. Sorry for your loss especially as her treatment was going ahead so sad

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My Dad died of an unknown primary metastasis last month. He had lymphoma 7 years ago and had a right parotidectomy to remove squamous cell cancer in May this year.

They told him he was terminal with months to live at the beginning of September (after he had a mini stroke). Yet a couple of weeks later, Walton decided they wanted to operate as they wanted to “find out where the tumour had spread from”. They said they’d let it grow for a month then do an MRI to check. My dad had accepted he was going to die and had started sorting things out and prepared me. Then he suddenly had hope - yet I could see him deteriorating daily and I knew he wouldn’t make it. Dad thought I was being negative but I was being realistic. It was heartbreaking and after he died (a month after the terminal diagnosis) I was so angry with them you know.

What I’m trying to say is, every case is different and they wouldn’t have just let him die if there was something they could do.

I totally feel for you and I’m sorry it happened to you but try not to let your anger consume you.

Thank you Kim, I was just letting you know that if your area says it’s because of Covid, that wasn’t true of all areas and you can challenge them on that. Sorry that we’ve met in this unhappy place, take care of yourself, D

Hi Parrot, I’m sorry about what happened to your Dad. But in the opinion of a medical expert (not me), there was something they could have done. It was a very rare cancer that is always ultimately fatal, but it can be treated. I’m not letting my anger consume me - it’s more shock. I can understand why it happened, but I don’t want it to happen again.


I completely understand xx

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