This is a subject that I think is very much glossed over and is so important. When I was diagnosed in 2011 with cancer, before I knew it was terminal, my partner, now my husband, could have so easily walked away and said “I cannot handle this”, but he didnt. Bless him, he stayed and held my hand and has never let go. Paul has looked after me despite in the early stages of having carers in to take care of me when I was really ill. He has always been there in a sort of supervisory role I suppose.
We have so come a long way since those early days and learn t so much and grown closer as a result. It is not an easy path that you will take and there will be ups and downs but you can get through it. We did and came out the other side.
It made me realise in the early stages, that carers are not treated as well as they should be, especially if they are a member of your family or your husband or wife. Paul has been through hell and back so many times since my illness. I don’t know where he gets his strength from but it is amazing and I so admire and love him for it.
No doubt as carers, you have felt resentment, fear, depression, anger, guilt, frustration and even isolation. But the truth is you are not alone. Many carers are feeling the same out there as you are. Point is I am not sure how you can share your experiences to know you are not alone.
Talking to your carer about how you feel and what is going on gives a better understanding for you both and helps the carer to know what perhaps they can or cannot do for you. We all feel angry , resentful and guilty at some point, which is only natural. There is going to come a time when I will not be able to continue the jobs like running a home, cooking or looking after Paul. But we have Wills and POA’s in place to help us. It is important to try and be prepared for when things become too much. You should never feel guilty because your job is just as hard as the one you love who is going through the cancer.
Cancer can be very frightening. At the beginning, I felt that I didnt know enough about it and when I spoke with the Oncologist or doctors they always spoke in Doctor speak which was like a foreign language at the time. Paul and I soon learnt that you need to jot down questions and not be afraid of stopping them to ask for it spoken in English so you can understand it.
It can help to find a sympathetic person to talk to about your fears and worries. Just talking and getting your concerns out into the open might be enough to help you. Friends are always willing to lend an ear or speaking with McMillan or your Sue Ruder nurse which I always do when she comes to visit. It helps both Paul and myself to ask things and get a better understanding. I would hate to think Paul is quietly worrying about things concerning me and it is affecting his health as he has no one to ask.
There are bound to be times when you as a carer have an off day, as your tired and anxious regarding the person you care for. Whatever the situation, please do not feel you are letting anyone down, you are just being human. Remarkably enough, the patient has bad days too, so you are not alone.
When we were first told, it was an initial shock. We were angry and frustrated as we both wondered why me and why now and what am I going to do to sort this out. In the early days you can well get cross with your carer as you try to understand what is happening to you but try to see things from their point of view too. I hated seeing Paul so upset when he visited me in hospital and seeing how I was because at the time my prognosis was just 6 months. Yes, a scary thought indeed when I look back and marvel at where I am now - a true blessing indeed.
