Newest Review: ... I think must be the envy of the world. When I was admitted to the Mount Vernon Cancer Centre in early November I had no-idea what to exp... more
How to survive being a survivor
Member Name: milliesmum123
Advantages: look forward
Disadvantages: don't look back
A lot of people hear the word cancer and it provokes lots of different emotions for them. When you are told you have cancer you feel suddenly very afraid and in turmoil wondering how you will get through the ordeal but there is another part of the cancer journey which is really tough and that is learning how to live again once you are a survivor. There is so much help out there when you are in the thick of treatment but afterwards the world seems to have changed a lot but you are suddenly on your own. I hope that this review will help give people some ways on how to survive surviving.
I was diagnosed with cancer three years ago. It came as a complete shock. I visited my GP to discuss feeling tired but I was expecting to be diagnosed with an iron deficiency at the worst, I didn't expect to be sent back and forth to various places for tests and eventually a diagnosis of a cancer. At the time my thoughts were all about how I would survive treatment as all you hear about it is how awful it is. I was shown around the hospital as though I was being shown around a new house, various parts were shown to me and I just felt overwhelmed by it all. I had chemotherapy and radiotherapy. The chemotherapy took three hours to be given and it meant I was in hospital for a good 6 hours in all. The treatment room was quite nice ,as nice as a treatment room can go with comfortable chairs, lots of pillows and set out a bit like a lounge so you can talk to other patients or you could draw the curtain around the bed if you'd rather have privacy. Chemotherapy did make me feel very ill but there were lots of tablets to take to help with various side effects but unfortunately very little could help with the tiredness which was disabling. I couldn't get out of bed some days and with a young child it was very difficult for me and my husband. Radiotherapy I found scary as it was a case of being all alone in the machine and even the radiotherapy department was underground so it all felt very surreal and scary.
One side effect I got a lot of was a poor blood count. The treatment killed lots of cells that fight infection and things so I felt like I was treading on egg shells, that if I caught so much as a cold it could be life threatening. I had several hospital stays and had to be isolated at one point due to infection. This was where I felt my worse both physically and emotionally and I think this is what had the biggest impact upon surviving. Ten months after beginning all of this I was given the all clear, I had reached remission. I have to go for regular check ups and there is a threat it could return.
When I was undergoing treatment my calendar was bursting with appointments, even though I didn't feel like going to any of them, it was full with treatment, check ups, GP visits, trips to support groups, visits by MacMillan nurses and so forth. Once I was discharged my calendar was very empty. At first I thought this was great, that I could do what I wanted and not be ruled by hospital life anymore but actually it felt very strange. I no longer had places I had to be and this meant I could just stay at home and do what I wanted. My little girl was at a nursery three days a week and on the other two days I would just stay in the house with her having cosy film viewings or doing jigsaws. I didn't talk to many friends as I felt so detached from them suddenly, we didn't have much in common anymore anyway as I had a child and they didn't and now I had gone through cancer it made it even more isolating. I had made some friends throughout the treatment process but found it difficult to talk to them knowing they were still undergoing treatment whilst I was 'better'. I began to feel really isolated and jealous. I wanted to do things but felt as though I couldn't, I was very afraid of over doing it, I was afraid of getting too tired or of getting an infection even though I was no longer having treatment but after ten months of living in fear it was hard to switch this off.
A day at a time
To recover you need to take it a day at a time. In fact at first I was taking it more like twenty minutes at a time and just concentrated on the most basic things such as making sure I ate and had good sleep. Anything else had to come secondary. With time I could take things in bigger chunks, hours at a time, half a day at a time and now i can look forward a bit better. I think when you first come out of treatment you imagine you'll slip back into your old life and everything will fall into place but it doesn't work like that.
I think it is so important to look forward. I kept looking back at various things and there was no way doing this could ever have a positive result. I found there were two things I would like back on one was my life before cancer and another was my time during treatment. I would crave my old life where I Had been relatively care free, when I had enjoyed my job and was loving being a new mum and I would wish I could go back to then. This obviously didn't happen and all it did was make me miserable and sad and wish I had a different life. I became very mournful and had a 'why me' attitude which was hard to snap out of. I also would look back on my treatment days and be angry at what it had snatched off me, I would think about how much I missed out during these months and how I would never get them back. This made me really upset and angry and again had no positive effect on me. I have come to realise that looking forward is the only way you can get through it. At first it's hard to do but now I can look forward properly. I can look forward to the summer months and playing in the park with my little girl and I'm looking forward to getting a job again. Looking back did nothing but upset me and I know that it wasted so much of my emotional capacity.
My diary was empty when I left the hospital treatments behind me and I liked this but it was dangerous as it meant I could isolate myself. I think it is important to make plans. At first you may not feel like planning much but even if it's just to arrange for a friend to drop by for an hour or to sit in a cinema one quiet afternoon with a friend... My plans at first were shaky, I would plan something very easy to achieve just like a phone call which wouldn't mean physical contact but this in itself was difficult as I was afraid my friends would be different with me but having things pencilled in my diary was really important. Eventually plans will become more challenging to whole days out. My latest plan is to go on holiday this summer and this is occupying my thoughts with practical approaches such as how to save up money in time, where we could go, what we will do when we are there. I am focussing on the practical side and not the emotional side as I know I will fret about being away from my local hospital. Planning like this has helped me to look forward and move my life forward to. It's made my days seem more achievable and have purpose again.
People kept telling me I should talk but when you feel completely on your own as though nobody in the world could possibly understand you then it is so patronising to be told by someone to talk to them. I couldn't see how talking could help, it wasn't going to give me my old life back and I was afraid that the more I talked, the more I would see people were different to me. I did eventually talk when I realised that I couldn't go on in the miserable state I was. I spoke to my GP and told her I needed some help because I wasn't coping with being a survivor. She arranged for some counselling for me and I also began to talk to my husband about how I was feeling. I think it was hard for him to know I was still so isolated despite being 'better'. I found that talking helped. Because people knew how difficult it was they helped me, they wouldn't push me to do things but would help me to plan things and give me the support and encouragement that I needed. Talking really did help, sometimes just saying things outloud would make me realise how irrational they were and how I had to stop the thoughts I was having, other times it would make me realise how normal a thought I was having and we would sometimes find things to laugh about. It definitely helped me to overcome many of the issues.
When you first stop treatment you are not better. You still feel very tired, there are still physical side effects and this is something you don't really anticipate so it's important to be sensible. You won't suddenly slot back into your old life and you won' be able to do everything you could. There may be permanent changes to your body which you have to live with. I think rushing into an old life will do more harm, you need to adjust slowly and get used to the new life you have and don't panic. I used to panic constantly that if I didn't sleep enough I would get tired again and would this make the cancer come back? If I got a cold would it make me just as ill again? Now I have learnt to be rational and control these thoughts which before would have sent me into a huge panic. It has taken a lot of time but I am nowhere near as panicked as I was.
There is loads of help out there when you're having cancer treatment and it doesn't have to stop once you're out of the treatment stage. You can still have ongoing support from various charities and many support groups love to welcome back survivors so they can help others and also so you can share your feelings. There were several survivors at the support group I attended but I just didn't realise it at the time. Having regular appointments with a counsellor helped me. Don't be afraid to seek help it is really important to still have support.
Living with cancer is very difficult. Even when you no longer are physically having treatment it still takes a big impact on your life and you can live in fear that it is going to come back. I have realised that by looking back and living in fear I wasn't actually living a life. I am now looking forward and making plans and feel as though my life is back on track now. I will never be who I used to be but I can accept that now and just appreciate the life that I do have now. Please do seek help if you feel you aren't coping.
Summary: you can do it