What I needed and still do

This is written from the perspective of a survivor of breast cancer. That’s me. I’ve survived, but have I recovered ? What are my feelings and needs 14 months on from diagnosis ? The fear of recurrence, the inner pain and sense of sorrow, feeling lonely and somehow abandoned, still dealing with and fighting cancer and its effects every day. This is the same for men and women, older and younger, whatever type of cancer you have or have had, or are still fighting to survive.

The reality of cancer started, as it surely does for all patients, with the diagnosis. My life was suddenly in pieces, on the floor, all the future plans counting for nothing, everything ruined, changed by a few shocking words. My life could also be considerably shortened.

‘ But I felt fine, no pain, no lump, no visible signs, nothing. This had to be wrong, I COULDN’T have cancer. But I did’. Once I realised this was real, where was I to go for the answers to the endless questions, how was I to understand all the feelings crowding in on me ? How was I to cope with cancer ? Who was out there to help me understand and find a way through this ? I understood the medical procedures, the treatment aims and what the doctors needed to do. What I didn’t understand was how profound and seemingly endless the changes to my way of life would be.

For a while it was information overload. Endless leaflets, sheets with explanations and advice, medical terminology and prognoses, cancer charity helplines, websites, books, havens, support groups, wigs, prosthesis and bra suppliers. A vast, bewildering raft of information, which I was in no state to understand or use. I needed focused help, personal advice and guidance, the voices of explanation and experience to clarify the facts and the options. To help me get my head round this before surgery, during the adjuvant treatment, during recovery. How long would recovery take ? How long is a piece of string ? The surgeon was going to remove my breast and reconstruct a new one, but who was going to help me reconstruct my life ?

But the information and guidance was all over the place and how did I know what applied to me and what didn’t ? Why couldn’t I go somewhere with all these questions where they would listen to ME, and not just explain things in such general terms. Don’t get me wrong, there was not anywhere that I went for help where it was refused, but it just wasn’t what I needed. What I was offered helped, but not enough. I am a person, not a statistic, not just one on a list of 900 women in the UK each week who find out they have breast cancer. Why couldn’t I find someone who would explain what cancer is really like, what I could expect and would have to deal with, what might happen as well as what would happen ? Where was the help I needed to tell me what resources and remedies were available to make life liveable again ? The medical support was there, it couldn’t have been better, but the other part of the support package was missing. I was being asked to make life-changing decisions without someone who had experienced this to tell me in stark, honest terms what lay ahead depending on my choice of surgery and treatment. It’s better to know to really know what living with cancer is going to be like.

In my analysis there are four stages of cancer diagnosis, surgery, adjuvant treatment and recovery. You get all the medical support you could ask for during surgery, chemotherapy and radiotherapy. Still, I don’t remember during that time the professionals asking me how I felt inside, sitting with me listening to what was going on in my head, how I was coping as a person, not just a patient. They were so focused on the medical treatment. Then the adjuvant treatment was over, and the direct medical support isn’t needed any more. Why did it seem as if the support dropped away when you get through to Stage 4 ? Is it any easier to get through than the other three ? In some ways it is the hardest stage and it lasts for ever. The experience of recovery is a very individual one. You can do it on your own, but I still want to have access to continuing support, probably not all the time, but when I need it. My need hasn’t been answered or stopped, I feel there will always be times when the situation overwhelms me again and I need to draw on a long-term support programme to get me through.

By stage 4 you are pretty much on your own unless you actively go out there and look for help. The support doesn’t come and find you. And it’s hard work trying to track down the different types of support and where it can be found. There is a narrow bridge you have to cross on your own between finishing your primary medical treatment and starting your new re-adjusted life under a whole new set of rules and limitations. With a comprehensive, central and easily-accessed and most important local support structure to point you in the right direction and help you overcome the difficulties you don’t expect, you have a fighting chance of getting over the bridge. Having to search out each resource on a separate basis you can end up wandering up and down the bank not knowing how to get your foot on the first steps to the other side.

With any battle, knowing your enemy is vital. Why wasn’t there somewhere and someone to tell me what struggles and problems I might face in the recovery period, so that I’d have realistic expectations and be better prepared to fight the battles ? How to deal with the feelings of guilt, lack of self-worth and self-respect, tiredness and disinterest, the after-effects of surgery and treatment, seroma problems, lymphoedema, depression, feelings of inability and uselessness, how to balance home, work and family, how to be a whole person again. Every cancer survivor has some or maybe all of these feelings. I knew getting through cancer was going to be a difficult and painful journey. But there were a lot more stops along the way than I realised or was prepared for. When unexpected problems and new side effects of treatment occur the need for support is perhaps even greater than at the start of it all. And what about my family’s needs ? For them there had not even been the support options which were open to me. I always felt as if help and guidance for them was very much an after-thought, a secondary need. Yet they were there for me on a day-to-day basis, usually trying to find their own way through this whole new and frightening process. I had them to talk to, but who could they turn to ?

I needed one place to go to find the resources to fight this battle. I needed to talk to like-minded people with the same needs and experiences. I needed guidance and integrated support for my particular set of problems, not generalisations and advice from people who had never seen me and knew nothing about me. Websites and charity information booklets provide a great deal of information, but you need help to interpret it, to relate it to your feelings and circumstances, and you need guidance to show you the avenues of help so you can choose what is right for you. And I need this on-going support. Not for it to stop when I am judged to have recovered. Maybe I’ll never feel I have recovered, that I’m really well again. But the hardest time is after the medical treatment stops, and everyone thinks the battle is won. I think I’ll always be fighting it, sometimes I’ll do better than others. But I need a refuge where they understand all this and which is always there to help me fight on.

I really do believe no-one can beat cancer on their own. What a difference the availability of a local centre to support me would have made to my ability to face down and deal with all the aspects of my cancer. I didn’t choose to make this journey through cancer, no-one does. But lots of people are going to have to do it, and we can all use our knowledge and understanding of how cancer affected us to make that journey easier for future patients than it was for us. It wouldn’t cost much, it really wouldn’t, because the most important resource is us our own experiences of the support we needed but couldn’t find. We can make a big difference to make this happen to increase the understanding of the need for on-going and integrated support. Everyone on the cancer journey has a large number of fellow travellers alongside them. That’s a lot of people who can use their personal experiences to help make sure continuing support is there for us, and for all the others who are going to need it to get through cancer, not just to survive but to recover.