My wife has recently passed away from cancer, it spread through her lymph nodes into her bones and lungs. Her original diagnosis was bile duct cancer, she went through a massive Operation called a whipple procedure followed by chemotherapy, the original prognosis after the operation was really promising, however on new year’s eve 2020 we received the devastating news that the cancer had spread, she was put immediately on to palliative care, she did develop pain quite quickly but it was kept under control really well with pain killer’s, she was doing really well, then three weeks ago she started feeling breathless, the doctor’s put it down to the concoction of painkillers she was taking, they tried to cut the painkillers down a bit but it didn’t work, eventually she had to go onto oxygen, the doctor and District nurses still thought the problem could be sorted out, then on the 17th of March, she shouted me to help her to the toilet, then she keeled over and never really recovered and died later that day. I have so many questions, due to covid we only had one doctor’s visit and it was a battle to get district nurses out because they were so busy, most thing’s were done over the phone. The doctor phoned me to offer her condolences and told me she was so shocked as she really thought her condition wasn’t too bad, but she had many health conditions, copd, angina to name but a few, they actually took her off her daily medication because of the amount of pain killer’s she was taking, so I suppose it could of been anything that caused her death in the end, although the official cause was down as cancer, we knew that she was going to die eventually, but I can’t get my head around how quickly this developed, all I know is that this is something I will never forget and I think the palliative care offered wasn’t good enough, maybe people reading this will think it’s the ranting of a grieving husband, but I felt so alone and out of my depth looking after my wife, I just felt the support wasn’t there and I feel an element of guilt because I feel I should of done more for her. Even the day she died it took 3 and a half hours for a district nurse to come out and pronounce her death, that to me is not good enough, luckily our son was with me and because she was sat up we managed to lay her down in a peaceful position, she died 11.00 on the 17th, she was pronounced dead at 3.50 on the 18th and the funeral home finally took her away at 5 in the morning, covid has a lot to answer for, as all excuses are now blamed on covid.
So sorry for your loss. Yes Covid has a lot to answer for. My husband died 2 days before first lockdown last March he had cancer we were informed he could be operated on after 3 months of waiting on results which also was blamed on the Covid situation. His bowel ruptured and was given 3 days to live. I have an investigation going on but still blaming Covid. My heart goes out to all whom have lost loved ones with Covid many have. I also feel so many have been let down with other illnesses because of this situation. My husband died at home at 9pm also waited until 3am for him to be taken away. I don’t think at all you are ranting yes grieving like you say things that should have happened quicker did not.
Take care
Sorry for your devastating loss, @kim5 @Wireman53
Reading your messages I can relate. My partner died after we shielding at home for most of the year. He had continuous ulcerative colitis flare-ups but unable to get to hospital, out many calls and emails to various services we’re not at all useful or helpful. Subsequently his condition worsened. He had a heart attack six weeks ago.
Our many attempts to reach out where unanswered. If we were able to see people in the hospital face-to-face I can’t help but think he would have got the attention and help he so desperately needed. And wouldn’t be where he is now. I made a few attempts to speak to some doctor’s but no one’s getting back to me, I will be taking it further.
I’m sure he is yet another indirect victim of covid. How many others are out there I hope gets national attention. We need answers.
I wish you a goodnight xx
Very sorry for your loss I hope you too get answers to be truthful it’s a battle with the consultant to get anywhere I’m awaiting feed back from October from a MDT every excuse under the sun he’s on leave he will contact you etc. I’m at the point now where I have written to the chief executive at the trust. Awaiting a reply. I hope you get some answers soon. Life is a struggle without all this
Take care x
Hi I wept while reading your message. I had experienced so much similar to you. You are not alone
My husband went down very quickly on his last day. No one despite many phone calls, got to us.
I too felt alone and inadequate. I felt guilty too.
The nurse finally arrived about 15 minutes after he died.
I was angry and very upset. I will never know if he suffered too much in those last hours.
That was 5 months ago.
I have finally got a full report about the catalogue of errors that night . Ar least it seems no stone was left unturned.
It won’t change anything but they have told me lessens have been learnt and measures put in place.
Try and forgive yourself. You did all you could and your wife would have known that.
The medical profession let us down a lot last year and it was so stressful for me and others like yourself. As you say not every thing was down to Covid.
Caring for someone you love is exhausting. We are running on empty at the end sadly.
Take care of yourself now. She would have wanted that.
Its a long difficult road we tread in grief.
Grief counselling helped me enormously. Maybe something for you to think about.
God bless. Take care
Dear @Merrin,
My wife Nicki was disabled from birth, with a condition called talipes, also known as club foot. The short version of her history is that her feet were rebuilt by a very good specialist from the age of 6 months up to her early teens. This involved breaking the bones in her lower legs with mallets, and using those bones to rebuild her feet. Her leg bones were replaced with steel plates, and these were the main source of her pain for her entire life. She had at least 20 such operations on her legs. She was a strong, strong woman, and very seldom complained about her pain levels - when she did, I knew she was in a LOT of pain.
For the last 3 or 4 years, our (very good) GP would make a home visit for my wife every 2 or 3 weeks. My wife was on morphine sulphate (liquid) and slow release capsules to help manage her pain, as well as several other medicines, about 12 or 15 types, I usually couldn’t keep up. In January 2020, the medical profession in its infinite wisdom decided that any and every patient who was on morphine would be limited to a certain daily amount. Beyond that level, they deemed that pain receptors were no longer affected by additional morphine. My wife used to get 4 litres of the morphine sulphate per month, as well as her capsules, and over a period of 2 months or so this was reduced to 2 litres. As a result, she was no longer able to manage her pain levels, and she would hoard her morphine sulphate basically until she could no longer bear the pain levels.
Nicki saying to me: “Perhaps when I’m dead, they’ll realise what they did to me” - “they” referring to the medical profession. Those words are burned into my memory - Nicki passed away on my 64th birthday in July 2020. The very thought still moves me to tears.
I too feel that Nicki was a victim of the covid restrictions, and that makes me so, so angry, and I make no apologies for it. I believe the NHS and the government have a lot to answer for. So many people are dying from non-covid illnesses because of delays or cancellations of treatments, and it’s a national disgrace. My view of the NHS and the entire medical profession has totally changed in this last year, and I will never, ever forgive either of them.
Dear Alston 56,
I think you have every right to be furious with the NHS and highlight some of the failings of which many people are blissfully unaware, even in the midst of the covid debacle.
I cannot understand how patients like your beloved wife Nicki have been left to manage complex medicines on their own, as best they can with little or no input from the very professionals who are being paid to care.
Many of my neighbours are singing the praises of our local surgery which has been coordinating the vaccination programme for several surgeries in what is a predominantly rural area. None of them are ill and are simply required to turn up at a given time for the simple procedure to be carried out. Whilst the development of the vaccine has been a tremendous achievement for the scientists involved, the giving of the vaccinations is more of a management exercise requiring little or no medical expertise. Provided targets are met, all is seemingly well. However in the quest to tick boxes, much routine and urgent medical care is being sidelined particularly at GP level and we will never know the true number of people whose illnesses have intensified or in some cases proved to be fatal. I agree with your statement that it is unforgivable.
There are many examples of people on this forum who have suffered abysmally from lack of care across the health sector, whether in hospital, the care services, palliative care or GP level and many of us feel guilty for what we failed to achieve for our loved ones. My husband died in November 2019 very suddenly and I know nothing has been learned from the various errors which occurred both before and after his death.
I am currently struggling to access treatment for my elderly mum who has various ailments and is in intolerable pain. I have more chance of securing an audience with the queen than being able to talk with her GP and with the Easter weekend upon us absolutely nothing will be done. I am angry, tired and frightened at having to make decisions I don’t feel qualified to make but there is nowhere to go. This is a scenario being played out in thousands of homes all over the UK but those who could step up to the mark are conspicuous by their absence.
I have said it before that many of the failings were apparent long before covid struck. The inability to tackle it and the continued shrugging of the shoulders by those who could, but won’t, help is terrible.
I so hope that one day the inevitable inquiry into the handling of the pandemic will initially reveal and then deal with the issues that have caused so many people so much heartbreak.
In the meantime my heart goes out to you and all those who have been, and continue to be, let down by certain individuals who could and should do better. If this is seen as a rant, then so be it. Enough is enough.
Take care. X
I hope you get some answers also.
I have given up. I don’t want to go down a legal route, but feel I need to do it for him, me and his children.
I wonder if it’s standard practice to not talk to relatives, maybe they have been advised not to.
Micks consultant spoke to me in a meeting I had with him in September 6 months after Mick died,he called for an MDT I also got all of Micks medical records this was back in October so still waiting on answers it is so hard doing this but I need answers. I will await minutes from MDT and a reply from chief executive then take it from there, I just need some closure I think.
X
What is an MDT?
Multidisciplinary Team group-of professionals from one or more clinical areas who together make decisions regarding recommended treatment of individual in Micks case he had 2 colonoscopys for screening of bowel cancer, X-rays that were on red alert and CT scans over a period of 4 months no treatment for cancer was given delays in everything until to late. This team of professionals should have put a treatment plan in place but did not happen despite phone calls emails our GP several times phoning the consultant. This consultant is supposed to be asking questions to the team. I actually work for this trust and can not return yet feel so let down
X
It’s clear since my post about my wife there are a lot of sad cases and stories out there. There is a real problem with the NHS since covid arrived that has proved fatal for some people who have died from non covid complications. In my wife’s case, her whipple surgery was cancelled twice, once she started to recover from that, she had to phone the Q E hospital in Birmingham to ask when she was going to start chemotherapy, they contacted Worcester royal hospital who eventually after waiting a month contacted us and started my wife on oral chemotherapy tablets, she struggled at times but she managed to complete the course and was feeling pretty good, we went to weston super mare for a few days to celebrate her finishing chemotherapy. She finished chemotherapy in September 2020 and had a CT scan, we heard nothing until November and we were given an appointment and had appointments cancelled three times, the final appointment was new years eve 2020, then she was told the cancer was terminal, she was told there was no point in further treatment because the chemotherapy hadn’t worked, so she was put straight on to palliative care. I said straight away are you sure no further treatments are available, but I felt like I was being ignored, the oncologist told my wife she was terminal and as we were leaving he was shouting happy new year to the nurses, it was a truly surreal and nightmarish moment that I will never forget. Shortly before Rias death I contacted the doctor with my concerns because with her regular daily medication and her pain killer’s she was on over 40 tablets a day, this also included morphine, at one point the doctor had me on the phone telling me which tablets to stop and which one’s to carry on with, I was having to ask how to spell the medication, then go and remove it and reorganise her doessett box with the new doses, I should never of had to do that, a doctor or nurse should of organised it, that was the whole problem right from the start too many phone calls and not enough personal visits, district nurses too busy and never available. I feel like we have been failed in a big way. I really don’t know how to move forward from this now, the funeral is on the 7th of April, my family seem to have accepted her death as normal, but because I was so close and looking after her till the end, I could see all the short comings throughout her treatment.
I am so sorry to hear your wife has died in those circumstances. No one knows your pain. My husband died on 25th November 2020. I too feel agreeved regarding Covid, as I wasn’t able to see him in hospital until he was so ill he could hardly communicate. In time you will come to terms with your wife’s death but for now you just have to get through each day and week. It’s like a black tunnel you have to go through. As the French say ’ you must empty your sac.’ . That means empty all your grief out, which takes time. With love.
Thank you so much for your reply, I definitely will be doing that, I don’t think I would be able to rest if I didn’t do something.
Dear @Kim5, thank you for sharing that. This might be something for us to pursue, as we didn’t have this in place.
I hope they can provide some information for you. I have been warned to be prepared to accept a long and emotionally draining process, people just want to make me aware, I get that but feel I owe it.
x
Thank you for your kind word’s, you are right it is like a dark tunnel, so many questions not enough answers.
Hi Alston
I am so glad you spoke up about the disgraceful treatment of your loved one. I too am disgusted by the way my husband was treated by the NHS and because of this I found it very difficult to clap for them during Covid. My husband died in 2018 but the treatment he received in hospital for his pancreatic cancer was awful. He was recovering from a Nanno knife operation which he was led to believe was the best thing for him after horrific rounds of chemo and radiation. His surgeon insisted he went into Manchester Royal for the op as this was where he worked, but he did not inform us that he was going on holiday, as was the pancreatic specialist nurse. My hubby was put in a side room in a womens ward. The nurses and doctors did not give me proper information. He was seen by several young doctors who didn’t seem to be forthcoming regarding my questions and there was hardly any cleaning done in his room. I remember seeing a tablet left under his bed for a full week. Pads were left in the toilet and unused food was left piling up on his bedside table. They told me he had developed sepsis (not surprised) and he also had ascites where his legs and feet swelled to capacity. The fluid was often not being drained off properly and no one seemed to know what was happening. Then a consultant took me to one side and bluntly told me that my husband was dying and suggested I tell him. I was devastated so I refused and a nurse decided to tell him when I was not even there. Eventually his consultant returned from holiday and told me that my hubby was not dying. My head was in bits. I was so confused.
This all happened before covid. I dread to think what would happen now. There are a great deal of good NHS staff but also a lot of bad ones. I really believe now in hindsight that my husband was just another guinea pig for his operation as it is relatively new in this country and I think the surgeon was just adding another notch to his belt. There are so many unanswered questions but the surgeon just wrote me a brief letter to say that pancreatic cancer can take unexpected turns and he could not give me any specific answers. It is over 2 years since my husband passed away and I still believe his death was as a result of shabby treatment in hospital.
Dear @Angiejo1,
My good God, I am so, so sorry to hear about your and your husband’s dreadful NHS experience. I cannot begin to imagine the stress and distress it must have caused both you and your husband, and over a prolonged period of time too. At the time your loved one needs you most, and help and support from hopefully caring professionals, they are left pretty much to cope on their own. Rage, fear and frustration must have been just some of the emotions I suspect you and your husband experienced. My wife used to tell me that she would rather die in a gutter than go into a hospital. Her view of the medical profession was very much tempered by her practical experience of doctors, consultants, specialists and nurses throughout her life.
As you say, there are good and bad staff in the NHS, as in any profession, but these are the people we TRUST to give our loved ones the best care possible, and when they fail to do so, what recourse do we have? The whole experience can be so draining for us that the last thing we feel like doing is taking action against the NHS. But we are the ones left with all of the emotions, the anger, the distress, thinking about the what ifs, the guilt we carry wondering if we could have done more to help our loved ones. Even though people may try to make us feel better by telling us that we did our best, we always continue to doubt ourselves. I know I do.
I wish I could offer words of comfort, Angie, but truth is, I’m lost for words. I can only hope and pray that these emotions lessen over time, and that we can find some degree of peace. But, sadly, I have my doubts.
All my very best wishes to you.
Alston
Hi sorry for your loss. Awful to go through Mick was the same starting with stomach problems constipation etc like your mom Drs given him pain medication etc. I knew something was wrong backwards and forwards to Gp until a student Dr sent him for tests but still waited months for results etc until too late. I don’t think we will ever get our heads around this. So sorry for your loss it helps in a way to open up on here, I think we all feel guilt a lot of what ifs but still need answers.
Take care of yourself x
Alston 56. Thank you for your comforting reply.
I think the intensity of the situation has decreased a little now but I won’t trust the NHS again in their judgement and I don’t think I could ever have chemo myself after seeing the effects on Ron.