Brett G
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After the Treatment Ends…

Brett G
Posted by
28 Nov 2014

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. Recognition of what one has been through is an important starting point in dealing with the issues, which have been described as a ‘Roller Coaster Ride’. I thought Roller Coaster rides were supposed to be more fun than Chemo, but each to their own! Ironically it was by writing this blog that I was able to recognise the ride I had had. Many thanks for the great response to my blog; having had over 1,600 ‘likes’ on facebook, and many touching comments has been wonderful. If you have your own story to tell maybe try a blog too?

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’.

Comments

Anonymous
02.12.2014

Fantastic words of wisdom and understanding Brett. I think Jason would benefit from reading your blog and joining MacMillan. Thank you. Take care xxx

03.12.2014

Outstanding blog Brett which I think will be really, really useful for other blood cancer patients who have recently finished treatment. I wish I'd known that this existed when I finished my treatment as I think I would have benefited enormously from a forum to explore my feelings more and talk about what I had gone through which as you say is a huge emotional roller coaster which at the time you don't really have an opportunity to fully get your head round.

We would love to publicise this on social media provided that you'd be happy with that of course! If so, would you be ok to provide us with a photo for us to use with the post?

Hope you're well and thanks again for being so open and honest with your blog. I look forward to reading the next update whenever that may be!

Anonymous
03.12.2014

Hi Brett , most of these feeling that you mention I have been through, I was diagnosed with ALL ( acute lymphoblastic leukaemia type B ) last year on Friday the 13th of December. This was a great shock but in another way a great relief has I had been tired and out of breath for some weeks before, I was 48yrs and classed myself quite fit being a builder and going to the gym once or twice a week.
Suddenly I was rushed into hospital really not knowing what was happening to me, I refer to this has my rabbit in a head light look, mostly in shock. All the Doctors and nurses were brilliant and so caring. I opted to go on the trail so maybe I can help others, On the fourth day in hospital I was put on a drug to help with fungi viruses after twenty minutes I passed out in front of my wife and son and a good friend who catch me has I fell forwards, what my poor wife must of thought I'll never know, having to rush out to get help, so this was added to my list of alligies which included penicillin and plasters.
Lucky for me I always have a bright look on life and not much gets me down. We do now look back and laugh. Just after this I was started on Chemo to start to kill of the leukaemia phase 1 has they called it, this never really caused me a lot of problem with the steroid I was buzzing, the hospital had already said that I would not be home for Xmas because of the chemo, so we had an early one which was nice, but me being me and not having any or little problem with the first chemo I did manage to be home for Xmas. ( we had buffet because we eaten the turkey a few days before lol )
On returning to hospital they then started phase 2 chemo well this hit me a bit harder, fatigue, tiredness and feeling very weak but all way put a brave face on it laughed here or smile there, then I got a bloated feeling in my stomach which never seemed to disappear, this turned out to be caused by the chemo, it had killed some of the bacteria in my stomach and the rest of the bacteria had taken over plus a small blockage in my intestines, this was cured by having a tube put down my throat to drain the contents of my stomach, this also included being nil by mouth for ten days, only fluids. But it work it sorted the stomach out and removed the blockage. ( so I didn't need a operation to clear the blockage) I had gone from 101kg down to about 80kg, hey I could do with losing a bit of weight.
Now came phase 3 chemo this was a lot stronger, with hair lost fatigue ect, but this was to get me ready for my transplant.then came the trip to southampton hospital who do the transplant. You now have to pass some test, heart, kidney and breathing test, got my date for transplant on my 21st of May 2014 going in on the 12 th of May for per opp drugs like anti rejections one.
I was very luck to have a sibling donor who was a perfect match, so he had to fligh over from Germany and get his blood ready for the transplant, which aren't to pleasant but he was very happy to be helping.
So the marrow or stem cell transplant took place, this dose hit you, you feel very weak, tired and find even the easiest task like going to the loo, very tiring but you do it, because every step is one more on the route the being well again.
I was very lucky I didn't suffer with mouth ulcers or bed sores but again my hair disappear with the 3 x spinal chemo, but I managed to eat all the way through this and I was allowed home on plus day 19 which was very unusual to be so quick, most come out after plus 22 days.
This is followed up with twice weekly visit to the hospital who keep a very careful watch on you, you have to be so very careful with no immune system to speak of, keepin away from everyone at first, even now at six months after my transplant I still only have an immune system of 0.03 which is some way off of 0.3 which is a poor immune system, I'm now having lymphocyte from my brother blood, this is to give your immune system a little help and my cause a little graph viruses host disease. That's where I'm to in my treAtment at the moment, still smiling and laughing and a pain in the butt. Life always has a good side to it. I will be home this Xmas.
Hope all is still going well Brett

04.12.2014

Hi Andy,

Thanks, it is great to be able to do it, and I hope, to make patients aware that these issues are quite normal and that there is great help available.

In talking about my experiences I found many other people that I know have been through similar situations involving a son, parent, or brother or sister. The progress that has been made in treatment in the last two decades is fantastic, if we can achieve the same again then it will help so many families.

Please do feel free to publicise this blog, I have attached a photo  of me with my family and my newly grown hair, but if you need a larger image do email me. If I can help you with any other patient initiatives I would be more than happy to do so.

Best wishes, Brett and family

04.12.2014

Hi Garry, it sounds like you are in good spirits and are getting through towards the other side after an even longer roller coaster ride than mine. It is not something any of us choose, but there are some positives, I know I will never look at life in the same way again. Enjoy Christmas and keep going, thinking of you! Best, Brett

Anonymous
28.06.2015

Hi Brett, amazing reading your blog, my son who is the same age as you and also with three young children, is 14mths into remission from AML, he also opted for Trial 17. I can relate to so much of what you say ie the major fatigue and 'chemo brain' and of course the elephant in the room. I think my son would can strength from reading your blog and also joining the MacMillan group. Thank you for sharing your story, and I wish you continued success with your recovery . Take Care .

29.06.2015

Thanks Lynn, glad it helps. How is your son feeling now? I am finding the fatigue an ongoing issue, not easy to deal with, but not complaining! Best wishes, Brett