Maria's Story

Any other White background
Sexual Orientation
South East
Relationship status
Married/In a Civil Partnership

Do you have any tips or advice that may help others support those who are going through treatment, including with any ongoing side effects?

As an ex-nurse I had a bit of an advantage. I knew much earlier than my husband that the diagnosis was not going to be good. I did not expect though how bad it would be. I made it a point from the beginning that I would be there for every doctor's appointment and I read up about his cancer and the different treatments that he is undergoing, so I understand better what the health care professionals are saying. During consultations I am always there taking notes, hear what is being said, ask questions and keeping him honest. My husband has a tendency to not mention important things, either because he is afraid or he does not realise it is important or he does not want to take too much time from the consultant. The "patient" often struggles to remember what has been said. I use my notes to explain at home, in a more relaxed setting, what is going on. Be honest and clear when you explain what the doctor said. I found that my husband for a long time was denying the stage he was diagnosed with as he had only heard part of what had been said. It was very difficult to discuss anything until he fully understood what the diagnosis was and what it meant. For a time he thought he could be cured but the doctor had made it abundantly clear that this was no longer possible as it had gone to the bones in his pelvis, ribs and shoulder and all other tests indicated that the cancer was aggressive. When the time is right start discussing things like wills and power of attorney and wishes for end of life care and funerals. All very difficult subjects that should not be discussed at the immediate start of the journey but you can't postpone it too long as it will be something that will keep festering until it is sorted. I noticed that when my husband finally accepted that he could not be cured and that his life span is limited, (unlikely to reach state pension age for example) we could start talking about these difficult but very practical things. A very heavy psychological burden was lifted when we BOTH sorted out these practical things. It is important to do it together, as both you and your partner will at some point also be faced with your own mortality. When you do it together it is comforting for both as you are thinking and working on practical things which give you to opportunity to talk things through. I am brutally honest with my partner and am not someone who will give false hope as this is not helpful. But I also do not tell him what he can expect. I know what is coming as I have been involved in many end of life care situations (including close relatives). He has not had any experience with it but I think there is no need to talk about that as it won't help him. Be realistic and practical. If there is incontinence, support by finding and talking about ways to cope with it (precautions e.g. incontinence pads for urine, always carrying a clean set of clothes and toilet paper etc. in case something goes wrong). Your partner will feel embarrassed when it happens so stay calm and re-assure him. Try to listen and be open when your partner wants to talk. Encourage him to get involved with the external support that exists. E.g. Maggie's, McMillan or hospital provided support. I found that my husband benefits from interacting with these organisations and the support programs they offer. They are not close so he can discuss things with them that he doesn't want to discuss with you or does not want to burden you with. Your partner often wants to protect you. As a carer, be careful of molly coddling. Encourage your partner to do what he feels he can do and if he finds that he is no longer capable to do certain things, accept it and show him what he still can do or how he can achieve his goals by breaking it up in smaller parts. It may take longer but it will bring a feeling of accomplishment and pride. It is important to not to take over when he can still do them himself (albeit a bit slower or more difficult than he used to). I am struggling with discussing my own feelings and the impact it is having on me with my husband because I want to protect him which is a natural instinct. In order to be able to support your partner it is important that you find ways to deal with your own feelings and the impact of his illness on yourself.

Please tell us how their treatment impacted your life the most.

My partner was already struggling with his mental health before the diagnosis. After the diagnosis and the subsequent treatments. (Hormone and radiotherapy) it became worse. He was and is struggling with the fact that his physical strength has deteriorated massively. His already fragile confidence took another hit after the short (non-cure) radiotherapy as that caused issues with his ability to control bowels and urine. We can no longer go for long walks or travel if there are no toilet facilities close by. Theatre visits etc. are now very uncomfortable. He has put on a huge amount of weight because of the medication and that is having a negative impact on his mobility and his self confidence. Apart from limiting what we can do together it also has a very profound effect on my mental health as he verbally lashes out to me when he is feeling really down and frustrated. What affects me most though is the fact that he is so very very tired and needs soo much sleep. I am still working but everything, really everything is now coming down to me as he simply does not have any energy. I am still working full time (he had to take early retirement as working is no longer a possibility) and having to do everything alone has had a huge impact on me mentally as well as physically. I have been diagnosed with Fibromyalgia and have my own struggles but since there is no practical support in the house etc. I have to overstep my boundaries which increase my physical pain. Mentally I am stressed which is not helping my physical well being either. However, his diagnosis and mine have forced me to look at my own life as well and helped me to make an important decisions about my future. I have decided when I am going to retire and announced this to my employer and I have started to make plans for after retirement and things that I can do alone. For me, the most difficult thing to accept was that we would not get old together and that our dreams for retirement were not going to happen. My husband is 8 years younger than I am and we had some nice plans which will now, financially but also time wise, no longer be possible. But we still have some time together and I am determined to make the best of it.

Thinking about your own wellbeing, what has helped you to cope, and where have you gone to find support? What tips and advice would you give to others?

I try to stay positive as at the moment there are still many things that we can do together if he wants to. Take time for yourself and do things that you enjoy doing and can do alone. Learn to do things on your own, it is not easy but it will be very useful in the future. I have started to make connections with other people and am looking at more volunteering so I can build up a network and things to do. This will give you some time for yourself and the option to be out of the house for a short period if you need it and it will give you a purpose when he is no longer there, because that moment will come. Talk to your friends if that is possible. Not all your friends will want to hear and listen to your story. Don't be offended, accept this and see these friends as someone to spend some fun time with. Sometimes that is all that is needed. You will find that there are very few people who want to talk about things like your struggle with your partners illness, but there are always a few that will be there to listen and just hold your hand/have a shoulder to cry on. I found the most unexpected people actually offer that kind of support. If you are still working tell your colleagues and your managers about what is going on because there will be times that you will have to support your partner or that you will be affected emotionally which may impact your performance. Workplaces also often provide support options. Sometimes, the support of friends and family is not enough. Please do contact the charities that are providing services to close relatives of the "patient". E.g. McMillan, Maggie's or other local organisations. Talk to your GP and ask him/her what support is available. There is a lot out there. Prepare yourself for the moment that you really dread by ensuring you know where you can go to get the care support that is needed when the inevitable comes. For me that gave peace of mind knowing that everything is in place and how to get the support I need at that moment. I now have time to do other more fun things, accept and not be afraid of what will come whilst enjoying to the full what my husband and I can still do together. Make plans for fun things to do (but not too far in advance) with your husband but also with friends so you have things to look forward to.

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