Mar 21 2008
My story
Hi, I am an administrator of this website. I have been diagnosed with Burkitt’s lymphoma in October 2000, just before my 5th wedding anniversary. My boys were 3 and 1-year-old. At that time I was a 3rd year student nurse at University of Surrey on a community placement.
I had my treatment at The University College of London Hospital. I spent nearly 6 months in a hospital having my chemotherapy, with short breaks at home when I was waiting for my blood count to recover between the chemo courses.
I had to take a year off to get my health sorted. It was a very long year! The treatment itself, the recovery after the treatment, it all took time. I have survived all this and went back to university, got my Diploma in Nursing Studies and started to work as a staff nurse on a medical ward.
After 2 years I left the NHS and started to work in a hospice. That was in August 2004 and I am still working there, but now as a research nurse. Since I have left the University, I have been back a few times doing various courses such as Mentorship Course, BSc (Hons) in Clinical Practice and I am in a process of doing MSc Advanced Practice. Hard work, but I am nearly there.
Since I have been diagnosed with cancer, I felt a need to talk to somebody as I found it very difficult to cope with all of these anxieties on my own. I thought it was going to be different when I finally discovered that I was cured, but I was very much mistaken. It has not changed as much as I was expecting it to change. Every time I feel unwell, I worry and I cannot do much about it…
My wife has always been very supportive. I probably wouldn’t have made it without her by my side all the way through. But there was only so much she could take. At some point I realised that her support for me was beginning to wear off.
At that point I did not know what was available there for me.
Nobody has ever really explored how I felt, whether or not I needed some help. Working as a palliative care nurse in a hospice environment by providing psychological support to patients and their families, I learnt how important it is for most of us.
About a year ago I joined a Cancer Research Partnership Group in Guildford. The aim of this group is to provide a unique patient expertise to researchers. As somebody who used cancer services, we believe we can contribute to their improvement by being involved in research planning and also in implementation of research findings.
I met some great people there, who want to give something back to society, but are also very supportive towards each other. Meeting these people helped me to realise how important it is to be able to meet somebody who has been through similar problems in life and who understands what it feels like.
I decided that this website would be a good starting point in setting up a support network for those affected by cancer. Reflecting back on my own story I believe that those in need of such support are only those who had cancer, but also the members of their families.
2 Responses to “My story”
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Hi admin. I’m new to this chat idea. But was recently laid off from my job and have quite a bit of free time now so I can take advantage of meeting new people.
I’m a one year cancer survivor. Last year was informed that I had gastric cancer and horror set in. I’ve always been in the best of heath and exercise, eat well and in general take good care of myself. After a scope revealed a small ulcer the biopsy confirmed the worst. I had a partial gastrectomy and 30% of my stomach was removed, there was no findings in any lymph nodes or other organs so it was determined that no further treatment was needed. This was a relief, but getting over the surgery was hard, and had to change the way I eat etc. I had a good year and no further complications outside of the normal stomach trying to stretch to accompany larger amounts of food, which I was told would happen. I worried constantly and my doctor kept telling me not to fret about anything, that I was fine. Good advise, but hard to do. My husband is not the type of person to listen and although he was supportive through the last year, he just doesn’t want to hear my concerns and just tells me to stop it. Well I just got my reminder from my surgeon that it is a year and I need to have another CT scan and I am panicing. Of course, I image the worst and am not sleeping well and even though I feel great, better than ever, I just think it will return. How do you keep a sane mind and a positive outlook through all this?
I suppose I am quite fragile now due to losing my job 2 weeks ago and this must add to the stress, but I have to be prepared for whatever comes along, which last year I was not and literally went into a darkest hole I’ve ever experienced.
If you can offer some tips from your experience, I would be most grateful. Thank you for your patience and your caring for folks such as myself.
Lorry
Hi Lorry,
Thanks for your story. Finding somebody to talk to about your concerns is very important. It is the best way of dealing with the problem. I have been in remission since 2001 and still have my worries. Unfortunately, the disease leaves a mark on your psyche, which is going to be there forever… It would be silly to pretend the problem does not exist. Acknowledging the fact that there is a problem and finding a way of dealing with it is the best way forward I can think of. This is not only my opinion. I work in cancer services and I’ve heard the same opinion so many times. When you mentioned how your husband responds to your worries, I thought-my wife’s responses have been very similar. That is how the idea of this website was born. The best person to understand how you feel is somebody who’s been through similar experience. You can always email me and we can meeto on line one way or another or pop in to the chatroom on the website every Thu after 20.00.
One last thing, don’t worry, you’re not on your own. Together we are stronger.