Suffering severe fatigue still!

[Kieran]

I am new to the online community. I am 24 and I finished my treatment for tongue cancer 5 months ago (30 radiation treatments to the affected area). I am just really concerned as I'm still so incredibly fatigued everyday. The heat really has a bad impact on me as well. Just wondering if this is normal in some cases? And if there's any tips on how to strengthen myself against the heat and how I can help reduce some of this extreme fatigue? 

Thanks guys 

[Jane65]

Hi Kieran, I know just how you feel! I have had chemo and radio, finished early December and still feel so run down! My GP referred me to the lifestyle clinic, which is part of the UNSW in Sydney. Where do you live? If not Sydney, have you googled to see if there is a fatigue, cancer or lifestyle clinic near you?

My exercise physiologist started by getting me to fill out an hour-by-hour activity sheet where you have to rate everything you do in terms of how physically or mentally challenging you find it. I've also had to wear a step-counter and record how many steps I do each day.

She tells me the fatigue we have is not like tiredness, and pushing yourself can actually slow your recovery down. I'm going back next week to discuss my activity sheets and hoping she will give me some tailored advice on what I can do to make myself feel better.

She has said it's likely to be a long, slow journey, so I think acceptance is a key thing. I don't notice myself getting better day by day, but I do notice there are things I can do now that I couldn't have done at Christmas time. 

I hope you find something near you. We are all in a new situation, with challenges we have never faced before, so I think it's only common sense to ask others, who know more about it, to help us out!

good luck! 

[Kieran]

Hi Jane, 

thankyou so much for your reply. 

I don't live in Sydney, I live in the Wollongong area. I'm not entirely sure where the closest physiologist is, that  specialises in cancer fatigue. I think I have to do what you said and really start to accept that my life is just going to be much different than what it once was. It's just really hard at 24 to accept that I can't do so many things. But I'm so grateful that I currently have a good prognosis and my surgeries and treatment have been a success. 

I've noticed that regular vegetable juices with a lot of kale and berries really give me a good boost in energy.

Since my surgery, I've cut out red meat and dairy. Which has definitely helped my digestive system and I feel better for it. 

Its ta a long process/journey as you said and I'm just happy that there is sites like this where I can speak to people who are going through it as well and people can relate to your struggles. 

Thanks again Jane, I really appreciate it 

[Jane65]

Hi Kieran,

the cancer council ran a webinar on fatigue last week - I was going to dial into it but it was at 7pm and I fell asleep and missed it! Ironic, isn't it? 😩 However, I'm told it was recorded will be available to download in a few days - check out the webinar section on the support area of the website. There may be some good ideas there!

My local pool does something called hydrotherapy classes, which are kind of like water aerobics for lazy people! I find moving in water less tiring, so I enjoy this kind of exercise more than walking, which is really hard work! I think we all struggle in different ways, I guess it's about finding something that you can take some pleasure in without overdoing it.

I really hope you find a way through this, and am glad we can share our frustrations! Take it easy, and please be nice to yourself! 

[Margaret_CCNSW]

Hi Jane and Kieran,

Thank you for mentioning the Cancer Council Webinar on Fatigue After Cancer Treatment, Jane. The link is now up and running. Please visit http://www.webcasts.com.au/ccnsw_230217/

Other Webinars which may be helpful are available to watch at https://www.cancercouncil.com.au/get-support/webinars/

Wishing you both the best,

Margaret

Online Community Admin team

[Jules2]

Hi Kieran

I also had tongue cancer and took me a while to get over the fatigue issues.  You might want to get them to check out your thyroid function as that can get affected by any radiotherapy if you had that.

Hope you are feeling a bit better

Julie

[rinshedal]

Hi Kieran,

I had similar cancer as you, completed my treatment in May 2015, while I was undergoing treatment I had the same issue of fatigue and I slept a lot during that time to help my body cope with the effects of radiation and chemo.

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[JJ42]

Hello Kieran, everything that everyone else has said here is valid regarding post treatment fatigue. I have been okay for 20+ years since I had breast cancer, but still remember the unremitting exhaustion that I battled for well over a year after I finished chemotherapy. Three years ago I also had an SCC that was treated with four weeks of radiation and the fatigue following that lasted for many months. It is a case of patience, patience and more patience I'm afraid. You really have to listen to your body and try not to get so exhausted that no matter where you are, you simply have to sit (or preferably lie) down. That feeling of being disconnected from your power source can be quite scary if you are out and about so it is essential that you pace yourself. If you can attend an Aquarobics class, that could be quite useful but do be mindful that if you are in a heated indoor pool, just the heat can make you feel 'unplugged'. Good luck with your ongoing recovery.

[Kieran]

Thank you for your replies. Yes I think an water aroebics class would be good for me as I get exhausted still from walking short distances. 

Last week, I returned to work against my doctors advice, and unfortunately towards the end of my shift I became so lightheaded, that I collapsed to one knee, and broke out in a clammy sweat with blurred vision. I was then called a lift and sent home. 

Its really hard to accept at 24 years old that I'm this weak and at times helpless. 

Im grateful to still be here though and I won't let these lasting affects beat me mentally. 

Thanks again for the responses and god bless