Advice about dealing with end of life cancer for a loved one

Hi Lauren

My partner of twenty one years died in November 2020.  In December 2018 he was diagnosed with throat cancer and after chemo and radiotherapy was given the all clear. Unfortunately the cancer returned in 2020 into his bones, skin, thyroid and brain. We were told in the July that he had got many months to live and when he asked the oncologist if he would get to see Christmas he was told yes...that wasn't to happen. My partner was offered three rounds of chemo and would then be assessed to see if it was shrinking the cancer, if it was he would be offered more but as it was this time the cancer was too aggressive. After his second round of chemo which had made him very poorly the treatment was stopped. After a month long stay for him in hospital which was very hard due to COVID restrictions changing all the time, sometimes I could visit and others I couldn't, I received a phone call from my partner's phone while I was at home which turned out to be a doctor. The doctor was sat in the room with my partner with the phone on loud speaker while she told us that the treatment wasn't working and my partner had days to live maybe a week. My partner wanted to die at home and not in a hospice or the hospital. We had to wait until a hospital bed could be delivered and a care package put into place which took seven days. Luckily for us and for him he kept on going and one of the lovely nurses on his ward allowed myself and our daughter to visit, even though we weren't supposed to due to COVID restrictions. 

We got him home and he seemed to brighten up. He had us running about all over for him. We had many laughs while he was at home but we never let him see us cry. I'd pulled my back out rearranging the bedroom furniture so he could have the best view from the bed and then he moaned that he didn't want the bed there!! Carers came in every day up to six times if we wanted them but we decided to have them just in a morning to help wash and dress him then again at bedtime. We could hear him having a right laugh with some of the carers and he always used to moan about how they arranged his pillows and I'd hear him shout "Rach they're not doing it right". 

Luckily for me he was a wonderful patient, he was in so much pain but didn't complain. I couldn't get him to eat anything or take his medication but the carer had said not to push him so we didn't. If he wanted it then it was there. One Saturday afternoon while he was watching the horse racing on the TV while in bed he said he fancied a lager so I made him a little shandy. He never drank any but just wanted it on the table next to him while he picked his horses like he always did on a Saturday afternoon in the pub. He then told the carers when they came to get him ready for bed he'd been drinking all afternoon!! Cheeky!! 

Once a syringe driver was fitted to my partner to give him his medication he slept most of the time. He didn't want to have it fitted but a doctor had told him he would end up back in hospital as he couldn't keep his medication down or water. 

We had a pallative nurse call in to see him but they are also there to support you and your family. Take any help you can get if you need it and make as many special memories as you can. My partner's cancer spread very quickly and stopped us doing lots of nice things that we would have liked to have done.

Talk about your dad's funeral and ask if there are certain wishes/songs he'd like. Try to make light of it without getting upset and I know that is hard but remember not to bottle those tears up...take yourself off and have a good cry and remember to talk to each other. 

My friend when her husband was at end of life made him a photo album with lots of photos right from when he was a young boy to his last photo with his family. He loved it. 

As for how did I cope...well I had to, you just do. I take great pride and comfort that I was lucky enough to look after my partner as he came to the end of his life. I was sat with his son and daughter by his bedside as he died just as he wanted it to be. I can't see what I'm typing now for the tears. After being told he had days to live when he was in hospital he lasted for another seventeen at home in his own comfy surroundings. 

Sorry if I've rattled on a bit but once you start you can't stop. Try and find someone who has maybe been in the same boat as you as your feelings may be different to mine as I lost a partner not a parent. If not find a friend or family member who you can talk to, someone who doesn't mind the many tears if there are any.  Also sometimes the oncologist might get the timings wrong. My friend was given 6-12 months in January 2021 with cancer. He's now six months past that deadline and this weekend has taken himself off to the coast on his motorbike!! 

Sending love to you 

Hi 

Many thanks for taking the time to reply I can understand why it had been difficult but I hope it has been helpful to get it off your chest so to speak. We have spoken a bit about his funeral although he is a simple man who just wants a cremation, unfortunately he lost his sister when he was 7 (she was 13) and his father when he was 18 (also from bowel cancer) so old family photos can be a bit painful for him but he takes comfort that he will be with his sister again at some point, they were very close. He takes a lot of joy in his cats so we try to talk to him about them and he enjoys telling us about the things they do. He doesn't want to go into a hospice he wants to stay in his home for as long as possible and so hopefully we can keep this going for as long as possible.  

Like you say we will try and just keep going and see what happens.

Your advice though is much appreciated

Lauren 

Browsing through the forum and found this post. Really helpful to read. My Mum died in 2020 of throat cancer and was able to die peacefully at home. My sister and I were able to be at home with her for the last week and the support from the Macmillan nurses was great. 

My husband of 35 years, aged 59 has just received a terminal pancreatic cancer diagnosis and so we are contemplating how his life will end. He has had 2 previous successful operations for bowel cancer however this time, it feels very different. 

I am conscious that the doctor's advice is to take one step at a time; however we also want to be prepared. 

I know that palliative care is not just for end of life, also for pain management. We have had a full and active life, knowing from the first diagnosis in 1989 that life was precious. We have a first meeting with the team on Thursday. 

Hi Christa

So sorry to hear about your mum and now your husband.
How amazing for your husband to have had his first bout of cancer in 1989 at such a young age and it looks like you have both made the most of your lives…life if precious like you say. He is still so young though at 59. 
I was diagnosed with breast cancer 6 months ago just 15 months after losing my partner of twenty two years to cancer. After having surgery and a reconstruction i am now on tablets for the next five years to try and keep this blooming cancer away. I too intend to live life to the full for a very long time. 
Sending love to you 

Thank you for your reply, Rach5.

I was so sorry to read about your own diagnosis of cancer. Sending you best wishes for your recovery/continued health now.

What you said to the earlier post rang true for me. The original diagnosis from the doctor for my husband was that it was months not years and chemo would be palliative rather than curative. Unfortunately, the time we had left  turned out to be much quicker. I think he had carried on with normal life as much as possible from having pains from January until the diagnosis in May of this year. Once the diagnosis was terminal, he just seemed to face this calmly and prepare for the end of his life. We had time to see family and friends and to put some financial matters in order. After a short spell in hospital, he was able to move to the local hospice. My sister and I were with him when he died on 6th July 2022. 

The facilities and staff at the hospice were just right for us in terms of pain management and support for us both. The doctor was lovely in how she spoke to us both and included us in decisions. 

The period between the diagnosis and the planned meeting with the oncologist was very difficult and confusing with little handover support or GP help. We did not know what to expect or what symptoms could be managed or not. NHS 111 and the paramedics did help on 2 occasions- I know not everyone has had the same good experience with them. The hospital doctor did acknowledge this lack of support and was keen for this to be improved in the future. We did have some support from the Pancreatic UK nurses on the phone. However, not from the local GP who had refused to do a face to face visit when asked.

So now it is 8 weeks from my husband's death at the age of 59. He had dealt so positively and resolutely with his previous 2 cancers and lived a full life. In many ways, he can be said to have died a relatively good death having lived a full and active life knowing that he was loved and admired by me, family and friends for a life well lived. He was fit and active until the end of April 2022. A short illness was what we would have wanted for him when he was in pain from the effects of the tumors growing in his liver. 

There had not really been time for me to think about what life would be like for me without him, it all happened so quickly. I had not expected it to be easy- we had been together for 38 years- he was a kind and loving husband who took care of me in so many ways. His enthusiasm for life was so infectious for me and his many friends.

I do know that my loss is still recent- too soon for me to access any bereavement counselling yet. I just did not know how lost I would feel and fearful of all sorts of things I took for granted in our comfortable life together. I am trying to be grateful for what we had for all that time. I do want to live on the basis that he is no longer physically with me, however I do have a life to live and rebuild. 

I have some support from friends and family however we do not have family close by and did not have children. 

I have been talking to various people and getting support and company where I can. I do know that many people have experienced loss and cancer, some at a much earlier age as well.

I take comfort from hearing about people who have been through this type of experience and been determined to live life to the full. I hope that I will be able to get there in time...at the moment it just feels so painful and overwhelming...

I have just read your post and I just want to say thank you for sharing it. My dad's cancer has returned and spread to his lymph nodes and they have mentioned palliative care. I am heartbroken and have so many questions that I know don't have definite answers to and answers I probably don't want to know. I am terrified that his final days/weeks/months will be full of pain and fear but your experience has given me hope that it may not be like that. I keep thinking of all 'what if' scenarios which i know isn't helpful but my brain gets carried away. 

Thank you so much for sharing your experience. Sending love 

I felt the terror as well when Dad was told his bowel cancer was terminal. His prognosis was 12 mths but he lasted 23 months. He had no treatment, was deemed too weak.  I would say Dad was relatively well for all but his last 7 weeks (then he had op for another bowel obstruction so left with second stoma, then a water infection).  Up until this last phase he was reasonably mobile, walking to shops, getting bus to town etc. If you haven’t already, get to know his gp. You don’t need hassle or delay with the pain relief meds (Dad was on morphine for about 3 mths before the last op). Get the referral from your gp to the Macmillan nurses or palliative care team. You are stronger than you think and you will do your very best for your Dad.  Xx