Lost my husband.

Dear Emsar 

So sorry to hear your sad news. I have said fast or slow it's so hard. You've had hardly anytime to get your head round the diagnosis let alone understanding treatment and then complications. 

You've been through a huge shock and loss I hope you have support and great care around you xxx

I can truly sympathise. My husband was diagnosed with non-small lung cancer metastasised to the spine in April 2017 at the age of 57 and was given six weeks to live. We were devastated and he was very reluctant to tell anyone else. He kept saying he would tell our grown up children but kept putting it off which was so difficult because at the time he became  ill I really believed what the doctors said. It was a very lonely time as I couldn't confide in anyone without disrespecting his wishes. 

However, he began to recover a bit after radiotherapy to alleviate pain and after 4 months of no other treatment we managed to convince the consultants that they should do a biopsy ( which they had not managed to do previously) Amazingly they discovered that he did not have lung cancer and instead he had prostate cancer. Hormone treatment was started immediately and then abiraterone. We were told there were side effects particularly on blood pressure and liver but this would be looked after very closely. After starting He got so much better and went back to work for just over a year. We had a good family holiday and another one just the two of us. He was so positive about everything and seemed so well. He was told if the abiraterone stopped working there were lots of other things that could be done. .We felt then that we would have a good few years together and planned to retire in two years time. 

In August last year instead of a consultant appointment we were told that it would be a pharmacist because things were going so well and she would report back to the consultant. But also in August 2018 my husband started getting headaches, something he never suffered from and the pharmacist  put it  down to his glasses or driving . In October he had a pain in his upper right abdomen and his PSA level had risen.. This was put down to constipation and in December he had pains in his shoulder and neck and his PSA level had doubled again.. Only then did the pharmacist decided she would ask the consultant to request a CT scan. However, that was not done and by this time I was very worried and I had to phone on Christmas eve to ask why it had not been requested.

When the CT scan was finally done the results came back in January showing that the cancer had spread to the base of his skull, front of skull, shoulders, thigh bone, and liver. This was devastating news again but we were made to believe that radiotherapy and chemotherapy could now help. It didn't. One session of chemo and two of radiotherapy saw my husband develop an infection and then high calcium levels which left him very confused and unable to put one foot in front of the other. It was very distressing to see him like this but it was treated after being rushed to hospital. Eventually though we were told the devastating news that no more could be done and he was sent home from hospital with palliative care and only lasted one week. I know he did not expect to deteriorate so quickly. None of us did.  I blame myself daily for not being more insistent on seeing a consultant over the last 6 months of his life. . It was his 59th birthday on 9th March and although he had been up and about the day before he could not get out of bed on his birthday. We had balloons and cake and gifts but he was so tired he slept most of the day. On the 15th he became even more ill and my son, daughter and  I sat with him until his heart stopped beating.

We had been together since we were 17. I can't remember what life was like without him. I tried so hard to keep him alive but I can't help thinking that the consultant at the hospital could have tried harder. Public services are under so much pressure  I don't blame any individuals I  just think the systems that are being imposed on organisations now are just not good enough. I am a teacher and I can see things happening that are just not up to standard. But sometimes someone has to stand up an disagree with policy. Someone has to say no this is not right. I have been thinking about writing to the hospital about my concerns because someone else might suffer because of this.

Patients with serious or terminal illnesses should have the right to see a doctor. Perhaps if my husband had been seen by a consultant last August the outcome may have been different. Perhaps if he had been seen by a consultant and had been given a CT scan the cancer would not have had time to spread to his liver and he may have got another few years of life to see his grandson grow a little bit more.  My three year old grandson keeps asking for his grandad. They were such good friends. I wish they had had longer together. 

Hello Jenny pen

Please don’t blame yourself for the outcome,and go over  the whys etc this happened, says me who also does it. It’s done they are gone and I would do anything to get him back. I look at his photo every day and say “please come back to me”, how silly is that?

I agree it’s all “perhaps perhaps perhaps” but we can’t alter it , I do wish we could.

I know I haven’t given much advice but at least please take comfort from the fact that you are not alone in these feelings

 Going to bed now and the last thing I will say is please come back to me 

Hi Jenni Pen,

Your story brought tears to my eyes I think because there were so many ups and downs, like in my own story.

My husband was diagnosed in 2003. He underwent several hormone treatments between the years of 2003 and 2013. When the third line hormone treatment failed, Chemotherapy was discussed for the first time, but Paul did not want to go down that route, and just as we were beginning to think about what other options, if any, we might have, Aberaterone was introduced here in Ireland and available through the public health service. Paul got two years out of it. During those tw years, we got engaged, got married, bought our own home and did some travelling. Then in 2017 it began to fail - the PSA climbed up again and scans showed more tumors in the bones - and Paul started to be symptomatic. And it turned out that his cancer had spread into the liver. He did almost a year of Chemotherapy. During that time he got unwell a couple of times and we went to hospital because we thought he might have developed an infection of some kind but he never did. But last April he came down with the flew and with pneumonia. They just couldn't get it under control again. His body was too weak. And his quality of life had become so poor really that he probably didn't want to go on either - I mean, be with me, yes, but not under those circumstances. He passed away 6 weeks later.

It is so difficult this situation, isn't it? when you think everything is okay and you go along for a while thinking and feeling that and then you realise: No, it's not, things have suddenly changed again and you are dealing with a very serious situation.

Also your and my story is similar because, like you, we were told things at times that were simply not true - or, let's put it this way, things that could have been true but that were said with too little willingness to investigate into the truth. For example, when my husband began to be symptomatic in March/April of 2017, we went to our oncologist and asked him if he could please do a scan because we felt that something may have happened with the cancer. And the consultant replied, "Paul's PSA is low. And he is not in pain. Usually when our patient has a low PSA level and they are not in pain we don't do scans." And that is just total rubbish. It is the most uneducated statement I have ever heard. The PSA level, as you know yourself, is only one indicator for prostate cancer activity; and particularly in someone who has been living with this type of cancer for a long time and who has had several hormone treatments, the cancer can change, and when it does, the cancer cells often don't show PSA any more. So, in other words, it can look like the cancer activitiy is low, but in reality the cancer is growing. And this is exactly what happened in our case. It really makes me angry that this doctor was saying this. Yes, I know, they are only human, and maybe he didn't think of that possibility in that moment, but he would have had to! That was his job! They finally did the scan two months later when the PSA level had risen to a point where even they felt that it was time to do the scan. And what they found was that there was a lot more cancer activity in the bones, which was why the PSA had gone up, but that the cancer had spread well into the liver by then.

Another time that something like this happened - something where somebody said something without really understanding - was in Paul's last night. We wer in the hospital. Paul complained of abdominal pain and we were all trying to find out whether this was his liver pain or whether he had the pain lowr down. I knew from having been with my husband for many years that when he was unable to go to the bathroom for more than two days he would begin to feel uncomfortable and that night I knew that he hadn't been to the bathroom for at least two days - well, he hadn't eaten anything either. So I suggested to one of the nurses to give him some Molaxole or something like that to make his to create some bowel movement. And then this bossy palliative care nurse came in and said to me, "Nobody would feel the urge to go to the bathroom after only two days." and "that cannot create discomfort for your husband now". At the time I let it go, far too tired to discuss anything. But today I am thinking: Yes, perhaps from a medical point of view you would say that after two days not going to the bathroom wouldn't cause discomfort, I don't know that. But what I do know is that my husband, may that have been physical or psychological, felt this discomfort all the time when he couldn't go. And I don't think it would have been any harm if they had given it to him. If nothing was there, nothing would come out. You see, what annoys me is that they think they know everything. But they don't.

I would imagine that your husband's cancer spread very fast. But of course time was lost because they treated the wrong cancer - lung instead of prostate. I would imagine that he wasn't able to do more than one session of Chemo because his body was weakened by then through all the treatments he had already received. The high calcium levels were perhaps due to the mets in the bones, this happened my husband too, and it caused a lot of confusion and disorientation as well as the toxicity in his body because the malfunctioning liver simply couldn't get rid of any toxins any longer.

I too used to blame myself an awful lot for not having insisted on scans back in April of 2017 and for not having been more insistent during other parts of this journey too. But we cannot change the past. We can only think now that we did the best we could at the time. And I think our husbands would be proud of us for what we did for them. And we are proud of them for everything they went through. They were very brave.

I too was with my husband until his heart stopped beating and he stopped breathing. It was a beautiful experience in the sense that it was so peaceful. It was good that I was there all along, not only because I had promised him I would be, but also for me because I actually experienced the end and how peaceful he went.

Love and hugs to you!

Mel.

Hi Emsar,

I am so sorry, I didn'r realise until this morning who started this thread, but now I can see that it was you. I am so very sorry for your loss and I am glad you have found us here because we have all gone through similar experiences and it helps to share here and read the experiences of others too.

Love, Mel.