I have had ME/chronic fatigue and Fibromyalgia for about 12-13 years. I was diagnosed with low-grade PMP (pseudomyxoma peritonei) in February 2016 which I had probably for 10 years. I had my cytoreductive surgery and HIPEC in May 2016 and was in the North Hampshire Hospital in Basingstoke for seven weeks. My operation was 12 hours, with all the usual suspects removed including my spleen. I experienced delirium and got sepsis in my wound and came home with a vac dressing* and drain in place. Just feeling lucky to be alive.
Recently, I have been really struggling with fatigue and having difficulties managing my emotions in relation to this. I then noticed that many survivors within the support group have mentioned issues dealing with low mood and psychological issues since diagnosis, during and after treatment. So I thought it might be relevant and useful to share this resource book that has been really reassuring to me.
I was really positive about my recovery after the major operation. I took things really slow and took good care of myself. I returned to work in January 2017 on a long phased return starting with one hour a day for five days gradually increasing every two weeks by an hour per day. I reached 37 1/2 hours by the middle of April (this was using all my annual leave entitlement) and I felt fine! I was really pleased I had managed to get back to work as it would finance all our plans for enjoying life as much as possible!
However, in June 2017, I recognised that I was starting to feel more fatigued. I requested to reduce my hours temporarily to 30 hours with a Wednesday off to recharge my batteries which seemed to work until late September time. I was having trouble sleeping and started to worry about everything. I ended up so so tired and struggling with fatigue and very little sleep. My thought processes were slowing down and I was struggling to make the quick decisions that were necessary for my job role. I would make a decision then immediately started to doubt myself and the decision I had made. I ended up going off sick from work in October 2017.
I was constantly worrying: what I had been through, the possibility of the cancer coming back, what if my fatigue didn’t get better? My mood was getting really low, not being able to achieve our plan for enjoying life/ lots of holidays and if I was unable to work I would be a burden. I worried about it all. Looking back, I also recognised that work didn’t hold the same satisfaction for me and I didn’t feel the same person as I was before diagnosis and treatment.
Anyway, I have been struggling these past few months to try to reduce my worrying and improve my sleep. While looking for things to help me in my situation I came across a book recommended on the Macmillian website.
The book is “The Cancer Survivor’s Companion: Practical ways to cope with your feelings after cancer” written by Dr Frances Goodhart and Lucy Atkins.
It has been a really useful read and covers:
- Worry and anxiety
- Depression and low moods
- Self-esteem and body image
- Relationships and sex
There is a review on the front cover by Dr Hilary Jones stating
“As a GP, I wish I could write a prescription for this book for every single person who has ever confronted and then survived cancer“
I thought I would share this review with the support group as it may be useful for others too ( I’m not on commission!). I bought it on Amazon. You can order brand new books, nearly new and used books are also available.
I’m not saying this book is a miracle cure or that it has all the answers within but I can definitely see myself, my feelings and current situation within the chapters of this book. It also explains that people can start to have difficulties managing their feelings weeks, months or years after cancer treatment, so it also made me feel better that I wasn’t alone in feeling this way!
Hope this review helps
*Vac dressing – Negative-pressure wound therapy (NPWT) is a therapeutic technique using a vacuum dressing to promote healing in acute or chronic wounds and enhance healing of second- and third-degree burns.