Several people have touched on the issue of ‘Moving On’ after my AML treatment. The illness and treatment basically knock the stuffing out of you both physically and mentally, and recovery is a multiple level issue that one has to work at.
For the first two months after finishing treatment I did my best, with the help of my wife (thanks!), to get myself on the road to recovery; this was my new priority, having survived. The physical side was easy to address – I built myself up by walking a little further each day, I started Pilates, and eventually made it back onto a cross-trainer to get the cardio side working a little more again. My thinking is if the worst happens and ‘it’ comes back I will at least be in physical shape to deal with it.
I still suffered major fatigue and chemo brain; poor short term memory, and some confusion. On top of this the elephant in the room of ‘what if’ this comes back were issues I needed to deal with. I started brain trainer exercises and Soduko, both on Ipad (great). I also tried to keep myself busy, and went out lots even if I did not really have the energy, as I did not want to end up in a real ‘down’ situation. One of the specialist nurses (thanks Victoria!) at the hospital had referred me to Macmillan at the end of my treatment, and eventually my appointment came up. This was not a moment too soon, as it allowed me to find out that the way I felt (no elation at ending treatment), and the steps that I was taking of keeping busy were both normal and the right thing to do respectively. I found out that I was in fact doing very well, great! I was keen to sign up to a ‘Moving On Group’ with Macmillan so I could get guidance on continuing my recovery.
What is a Moving On Group?
Many who have had treatment will feel angry, sad, or may not even know what they feel. Some people may choose to try and put that section of their life in a box, many may feel that it is a defining part of them. There are no rights or wrongs here but understanding yourself and what is going on is a great start.
The Macmillan group that I am in is led by professionals, and includes patients who have had a wide range of treatments including surgery and radiotherapy and/or chemo. I am the only leukaemia patient, but found the group very relevant. It is not for everyone, as a willingness to analyse yourself is needed, but can be great as an option for those who want it in finding the best way forwards post treatment. Obviously what is discussed is kept within the group, and the privacy of all is respected, you can say as much or little as you want.
What does it do?
In short, and I can only speak of my experience having done 4 of 6 sessions, it equips you with a tool kit to deal with issues that may be faced by ex-patients now or in the future.
This helps with practical issues, in terms of fatigue management (some great tips, including ‘chunking’ activities), exercise, sleep, and nutrition. Issues such as communicating effectively with health professionals are addressed (how many times have you had an appointment and felt you have not got what you wanted from it?).
A large part is analysing yourself. How do you feel? What worries do you have and how can you deal with them (that elephant of the disease coming back is a likely one!) What do you really want now? – what matters in life to many people will have changed following treatment.
Relaxation techniques also feature, and are great for managing that ‘wound up’ feeling that many patients experience.
There are other benefits, of being able to share your experiences with others who have been through similar situations. For me it has given perspective to my own situation, and I think, an understanding that whatever the future holds, things will be ok for the family, and that we should just continue to deal with things day by day and week by week rather than asking too many ‘what ifs?’!
With thanks to Macmillan, their volunteers, and all who support them. In their words ‘You don’t have to go through it alone’.