Another two weeks have gone without a blog from me! Some say no news is good news, and I guess this is a perfect example. I’m still recovering and will be for many more months, my consultant is still trying to figure out whether my donor cells are killing off my neutrophils and I’ve started to build up to a new routine. I’ve been in Northern Ireland for a week visiting my in-laws and Belfast friends, I’ve been to the gym twice already this week and have picked up my new car. Next stop, going back to work which will happen next week!

With the above in mind, I want to write about cancer related fatigue today – let’s call it CRF for short!

CRF is in my opinion one of the worse side-effects of cancer (next to boredom) and like all the side effects related to drugs, it varies from person to person. CRF hit me like a tonne of bricks, it literally came out of nowhere. I started treatment last September and besides all the drugs, I felt physically fine until around November and December of last year. I remember I started to struggle with stairs, then I started to struggle with walking. The worse case of CRF I got was in January of this year, I was extremely ill over Christmas and New Year with a debilitating infection and spent a lot of time in hospital being unable to move. When I was discharged, I struggled walking out of the hospital, I got about 5 steps outside before needing to stop as I couldn’t walk anymore despite Ade half carrying me to the car, I was exhausted, frustrated and upset. When I got home, I could barely move, Ade cooked for me, bathed me and even had to dress me, but with some encouragement and stubbornness on my part, a week later I was able to do the basic stuff myself. Ever since then, I’ve been building up strength and basic fitness to go about my day-to-day tasks and I improved greatly until I had my Stem Cell Transplant. The effects of the high dose chemotherapy and total body irradiation once again floored me. This was over 5 months ago and now when I look back to January, to May and now, I can’t believe what a struggle it has been to fight the fatigue, but also how much I’ve improved.

I’ve read several articles on CRF including personal experiences and what I’ve learnt is that everybody has had very different experiences. I recently read about a girl of a similar age to me who underwent chemotherapy for Non-Hodgkins Lymphoma over a period of 6 months, 18 months later she still struggles from CRF. I also read about a man in his 50s who had leukaemia and a stem cell transplant and he was back at work within 3 months on a part-basis. What these two people and I have in common is that we each deal/dealt with fatigue the same way, we paced ourselves and we pushed ourselves as well. Obviously with differing degrees but what this shows is that this method worked for us and I suspect that this will work for others in similar situations as well. So this blog is really dedicated to those people. If you know someone who may benefit in reading this, whether it’s a patient or a nurse working with patients who may suffer from fatigue as a result of treatment (not necessarily cancer treatment) do pass it on!

What kind of CRF did I suffer?
-Inability to wash and dress myself.
-Inability to feed myself.
-Inability to walk very far at all or climb stairs without feeling drained and breathless.
-Finding it extremely difficult to get out of bed or my seat.
-Losing concentration – not being able to focus on reading for example.

The first 3 are quite extreme, but then I’ve had 6 different types of high dose chemotherapy regimens, total body irradiation and a stem cell transplant. But if I can get through that, others can too.

How did I fight CRF?
With a lot of frustration! The important thing to remember is that I’m just over 5 months out of transplant and I’m still fighting it and have accepted I’m likely to for some months yet.

One of the first things I did was accept CRF. Initially I was in denial but when it hit me that I could barely walk without collapsing, I had to accept it before I could fight it. I learnt that I needed to pace myself but most importantly to LISTEN TO MY BODY! If I needed to sit down, I sat down, if I needed 10 hours of sleep, I had 10 hours of sleeps. If I needed help getting dressed, I asked for help. The asking for help was something I initially struggled with as I’ve always been independent and did things myself, but a nurse once told me that if I asked for help, it will get me to where I want to quicker and she was right! The next thing I did was set myself goals, this was super hard as I’m the type of person who just went for it, I accepted I couldn’t do that but also decided that one day I will, so a little bit of stubbornness and perseverance did help!

Did I see visible results?
Yes I did! I have to admit that I didn’t see them as quickly as I had wanted but with every improvement came a bit of morale boosting motivation!

After my transplant I couldn’t wash or dress myself. To start with Ade helped me, then as I got more and more confident I was able to try and do it myself. For example, instead of standing in the shower (as I could barely stand) I sat in the bath instead. Then I built myself up to stand in the shower for short periods of time, then longer the next time.

I could barely walk when I came out of hospital, but walking around my home and taking short trips out with Ade meant I was soon walking around the local shopping mall with many coffee shop breaks. A few months on, the number of coffee shop breaks decreased and now I’m shopping like I did pre-cancer!

My concentration started coming back when I gained strength elsewhere, I’ve only recently started reading again. I think this is related to energy as I’ve found that the more energy I have, the more I can engage my brain.

Did I do anything positive to help fight the fatigue?
Exercise! I don’t mean a full blown boot camp session, just moving in general. Although you should listen to your body, I found that regular exercise has helped me fight the fatigue. When I first had a shower on my own, I felt like I’d run a marathon as it was physically exhausting, but I believe it helped me improved.

I would start of with walking around the house and climb a few stairs. If I got to the point where it was a real struggle I would rest and try again another day. Once that goal had been reached, I would set another one. I did feel disheartened at the lack of progress to start with, so I would advise others to try not to, if you don’t achieve it the first time or the first few times, it will get better. I’ve had many tearful meltdowns attempting this, but I got through it and others can too.

I also found that sitting around doing nothing in front of the TV did nothing to help my fatigue so I started doing light household chores to get me moving, I found that helped a lot. Again, it’s all about pacing yourself and setting goals. The first time I vacuumed my home, it took me hours, I would do one room, sit down and rest for a while before doing another room. Before I knew it, I was able to do a couple of rooms in one go, then the 3 rooms in one go before I needed to rest. Now I have no problem with vacuuming all the rooms in one go!

My next goal is to get my old fitness back. I’m now back training at the gym but at a very low level. I’m attending yoga and pilate classes and I now have a personal trainer. The personal trainer will help me build my fitness up and reign me in a bit! I’m the type of person who would go into the gym and go in full throttle, it’s not really in my nature not to, so a personal trainer will keep me on a tight leash for the time being until I’ve reached the goals I’m working towards.

If you’re not really a gym type person, you can still get good exercise. For example, walking! It’s free and it’s an amazing way to build up stamina. Fresh air is also a great way to help CRF – sitting cooped up in a stuffy room doesn’t do anything to help.

I hope this blog has been informative and to those who are suffering CRF, I hope this has helped. If you have any questions you like to ask me about CRF, ask in the comments section and I promise I will respond!

If you want to read more about CRF, there’s a great article in the current edition of Lymphoma Matters magazine. CLICK HERE!

Happy halloween!


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