Maria's Story

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.