I am so reassured by reading comments on this forum, because I thought I was unique in having the fatigue and breathlessness for so long.
I was diagnosed with tongue and lymph node cancer in November 2015, resulting in a major surgery in the form of a double neck dissection, followed by a six week intense course of chemo/radiotherapy. I am now 4 years into remission, with no reoccurance of the disease.
However, the chronic fatigue and breathlessness which I have experienced for the 4 years, is worrying and affects my everyday life. My throat has been damaged by the radiotherapy, so my breathing difficulties are even worse. It feels like I just cannot get enough air into my lungs. I can only walk short distances on the flat, and walking uphill is virtually impossible, which is a great disadvantage, because we live on a hill. The fatigue causes constant tiredness, leading to lack of enthusiasm in anything which may lead to fatigue, and depression.
Prior to reading this forum, I could not believe that my problems were still due to the treatment that I received 4 years ago. Instead, I though that I was just getting old and unfit. I am reassured to learn that I am not alone, but I am also sad to think that there are so many people experience similar problems. But the fact that we are talking about it, means that we are still here, which of course is a good thing.
Thanks for sharing your own post-treatment experience and good to hear you find the forum of help. Indeed, others (including myself) may identify with what you are describing. The not knowing / being told what to expect and how to cope can lead to a lot of unnecessary worry and misunderstanding of what our bodies are telling us. I hope you will find useful ways of managing the fatigue.
Good to hear from you. I am sorry to hear of your problems with fatigue and breathlessness.
You have been through a lot and it is good, at least, to hear that you are 4 years into remission. However, your breathing issues must be difficult to cope with and I feel for you.
I also suffer from tiredness due to hormone treatments and some radiation damage which causes me to make frequent nightly trips to the toilet. As I am 74, there may also be some age issues involved but, as you say, at least we are still here to tell the tale.
I hope that you will keep in touch. There are some amazing, friendly and caring people in this community which is now such an important part of my life. Have a look at the 'Cancer Coffee Break’ section too. We sometimes like to get away from the cancer and chat about our pets, music and we also have the Word Game.
All the best
I am eighteen months into a clinical trial for Mantle Cell Lymphoma stage 4b and although I am now in partial remission, I had hoped that the fatigue and muscle pain would fade. I take protein supplements and follow a Mediterranean style diet (without the sunshine) I remain disappointed by constant fatigue. My get up and go seems to go without me. I find that little and often helps but like myself it is so slow to show any great difference. I don't expect Olympic style performance but slightly better than doddery old soul. I have split up with my constant companion...Twiggy, my walking stick. She's tall, blonde coloured, elegant ( I think) and is desirous to have to hand but I crave my independence. Should I resume this relationship and resign myself to the role of elder *statesman/old codger (delete as appropriate). Advice please.
I am sorry to hear that you are suffering fatigue and muscle pain as a side effect of your treatment. It is great to hear at least, that your sense of humour has not got up and left.
As an elder statesman/old codger of 74 myself, I sympathise with your situation.
I recently attended a Hope Course which was run by MacMillan Cancer Support. There was a session on sleep problems and it included tips for pacing your day as follows:
1.Try to achieve a sleep routine. Go to bed and get up at regular times
2.Plan your activity based on an average day
3.Alternate activity (physical, mental and emotional) with rest.
4.Break down larger tasks into manageable 'chunks' with rest in between
5.Try to achieve an element of routine such as morning and evening relaxation
6.Try to include things you enjoy
7.Slow down in the evening in preparation for a good night's sleep.
We also used a Fatigue Diary to score the level of fatigue for each activity during the day, rated 1 (No fatigue) to 10 (Extreme Fatigue). such as:
TIME ACTIVITY UNDERTAKEN FATIGUE LEVEL
7am Get up, washed and dressed 6
8am Make breakfast, eat and wash up 5
9am/11am Food shopping 9
At the end of the day, you calculate your overall fatigue and then review you activities to see if you can improve your situation going forward.
Personally, I like the idea of an elegant walking stick whether you need it or not.
@johnnieM Glad you found the LBW community and the Untire forum. It’s very common to feel disappointed in experiencing cancer fatigue especially after treatment. You are not alone in facing this situation. For many individuals, there is the expectation for life to return to “normal” and to be just like they were before diagnosis and treatment. This can be made even more difficult as friends and family often have those same expectations. While life may never be exactly the same again, it’s important on focusing what your “new normal” can look like and what you can work on each day to achieve a better quality of life. In regards to your companion Twiggy, it is up to you if you want to keep using her. If it allows you to be more active and mobile then please do. As stated in other posts, being active and having some amount of exercise (whatever activity suits you if that is doing stretches to short walks) is an important element to keep up energy levels and reduce fatigue. It’s good to see you have a healthy diet as it is part of achieving better energy. As is sleep and other contributing lifestyle factors like stress and depression. @RobertA thanks for sharing some of your insights, resources and tips. It's great to know that the Hope course is available. The Fatigue Diary is another great tool as well. We would suggest that it may be best set a goal of being entirely independent of your walking stick. To do so, take a step by step approach where it’s not eliminating it completely but reducing the amount of you use it each week until you feel that you can get on without it. The Untire app provides additional tips and exercises to build up stamina and strength to help. Using the walking stick or not is a decision only you can make. Find what works for you and makes you feel best. It’s also important to note, that it is always good to bring up your fatigue and muscle pain with your care provider. They can further evaluate you for any potential medical causes that could be further contributing to the fatigue. We hope this answer is useful to you. Do keep us and the community updated on your progress. We do hope you keep us updated on how you and Twiggy are doing. Please let us know if there is anything more we can do to help. ~ The Untire Team @johnnieM
Happy you found the LBW community and the Untire forum as we hope it can provide some reassurance and support regarding your fatigue. You are definitely not alone. Unfortunately, cancer fatigue is the most common side effect of cancer yet it is something that patients and their loved ones don’t hear enough about it. Your situation is all too familiar as 30-40% of individuals experience it even years after treatment ends. As far as advice, remember to take it step by step – day by day. Your description of fatigue leading to lack of exercise and decreased enthusiasm is what we describe as a “vicious circle” – one issue leading to another that leads to further decreased energy. The Untire app provides useful tips, videos exercises and education that can help you learn more about the vicious circle and help you find ways to “break out” of it. A bit more about it is found on our video that gives an overview of CRF and the Untire app: https://youtu.be/VBagOtMPF7Q
It’s good to hear you’re walking and being as active as you can. Any exercise you can do can increase energy levels and reduce fatigue. Strength exercises can also help build up stamina so you can further your walking. Little by little it will get better. Know that this community and our Untire team is here to help. You are not alone in this and we’re all in it together. Please keep us updated on your progress and let us know if you have any questions!
Hi, I’m really struggling with extreme fatigue and I haven’t even had any treatment yet!
I was diagnosed with CLL Chronic Lymphocytic Leukaemia about 3 years ago and have been on Watch and Wait since then. I have been told that I will probably need treatment this year, maybe at my next appointment in 10 weeks. Extreme fatigue is a known symptom but I can’t explain the depth of my fatigue. I’ll try to give an example.
Unless I have an appointment, I rarely get up before 2 pm, often 4 pm. It isn’t that I’m asleep. I’m just lying in bed as if I’m waiting for someone to put some new batteries in. When I finally do get up I go straight to the kitchen and make a coffee. I take it through to the living room and sit down, usually with my kindle or iPad. On at least a dozen occasions I have still been sitting there well after dark with no lights on in the house. I never sleep in the day time. I wish I could as insomnia is another major problem. I am never, ever ‘not tired’ but rarely sleepy.
I am widowed and live alone.
Please can you help? I’m just wasting my life. 😥😥😥
Thanks for getting in touch and explaining a bit about what is happening for you. I am sorry about your diagnosis and what you have had to endure so far.
Being a psychotherapist who specialises in cancer and other life changing illnesses, and based on my own personal experience of coping with 2 diagnoses, I hear what you are saying and wonder whether what you are experiencing is more than fatigue caused by the cancer. There can be a psychological cause.
It happens a lot that after a diagnosis we literally shut down. It's an instinctive way of protecting ourselves, because we feel we cannot take on anymore.
Watch and Wait is a very difficult place to be in - everything feels like on hold, nothing much matters, we can lose motivation, interest, our life is reduced to the bare necessities. To be blunt - so some it's like constantly standing at the brink of death.
It can lead to depression. It can be a hopeless and dark place. When we are on our own, then it can be especially hard to get out of this.
But the truth is, we don't know how things may go.
Do yo have a good relationship with your GP? Does the hospital which cares for your cancer offer psychological support? I suggest you discuss the possibility of depression with someone and explore what you can do about it.
It may take some motivation on your part to take the first step. There may be activities in your area that you can participate in.
You need to create a reason to leave the house, eg getting up, getting dressed, going out and buying a paper and going to a local cafe to have tea etc and read the paper. It does not sound much, but these activities are not to be underestimated. Make yourself go out.
You have already taken the first step by posting here and asking for help. That tells me you are in the right place to do more.
It is all about re-building a sense of being in some kind of control - if not of the cancer, but than definitely of your life.
I hope others here will share their thoughts and experiences.
You are not alone in this. It can be done.
What do you think?
With best wishes.
Thank you Karin for your speedy reply. You are spot on about depression. I am taking antidepressants which I think are starting to help.
I always try to make appointments in a morning if possible which gives me that reason to go out. But apart from that it’s difficult to find reasons to go out. I live on a hill, so even to go for a walk means taking the car to the bottom of the hill. We haven’t even got a shop in the village so to get a paper means a 10 mile round trip.
One of my other health issues is Achalasia. I’m going through a really bad patch at the moment, not being able to swallow. I had Botox injections in September which really helped for a few weeks. I had some more Botox in early December which I though would be great for Christmas, but it didn’t work at all - not even for a day. So I had no Christmas Dinner, no Christmas at all really. I’m surviving on Ensure drinks and the few mouthfuls of food I can keep down each day. I’ve got an appointment with the consultant on 12th February.
I also contacted a befriending organisation which pairs you up with someone just to chat on the phone once a week. They have taken all my details and said they would be in touch after Christmas but I haven’t heard anything yet.
I just wanted to welcome you to our community.
I cannot add anything more to Karin's insightful response.
I am so sorry you have had so much time in isolation since your diagnosis. I am so glad you made the brave decision to join the forum and share a little of your story.
I hope you will find new friendships here, along with support and encouragement to live well in spite of the cancer diagnosis.
There are many of us here, all at varying types and stages of diagnosis and treatment. Please do not feel as if you are alone in this anymore, you are not. Here in the community we support one another as much as we can, through the good days and the bad days.
I did wonder as well as Karin's suggestion, whether you would be able to contact Macmillan Cancer Support group? They are very good at providing support to those affected by cancer. They also may be able to give contacts to any local groups in your area.
Have a look around the other discussions etc here, there are a few categories. We love to chat, not always about cancer either. You are most welcome to join in with any of them. Don't be shy! 😄.
I look forward to chatting with you soon.
Thank you for making contact. I cannot really add anything to the comments made by Karin and Lou but I am so pleased that you have contacted us. Coping with cancer can be such a lonely business and we are here to chat and support one another through the treatments and beyond.
I agree with Lou, that MacMillan Cancer Support are worth contacting if you have one in your area. They did an awful lot to help and support me through my diagnosis and treatments. The medical people are fantastic in what they do, but I think that sometimes they are so busy with the medical side of things, that they can overlook our human emotional needs.
You have friends here Pammy and I hope you will keep in touch.
@Pammy44 @Sunshinedaff @RobertA
Thanks for explaining a bit more. It sounds like an "up-hill struggle" (no pun intended). But sometimes something in our lives reflects how we feel and what we are going through - like you living on a hill.
That aside, Lou and Rob make good suggestions. Use this link to check for Macmillan services in your area:
Achalasia can add to the sense of isolation, fear and depression. Food is nurturing for body and emotional energy. Without being able to eat much, life can be that more difficult on many levels.
It sounds like in all of this you are trying your best, and I would suggest - keep going. Perhaps recontact the befriending service, or have your GP advocate on your behalf. Perhaps they could also arrange for some counselling (if you would like), to have a place where you can talk about things.
Explore what's happening here, and you might get more ideas and insights.
Fingers crossed for your appointment in February.
Thank you so much Lou and Rob for your kind words of welcome.
Thanks too, to Karin especially for putting on the link to Achalasia which will explain the condition better than I could.
I also have a Urostomy, Long Q T Syndrome, Polymyalgia Rheumatica, GERD and Warermelon Stomach! I know, I’m just plain greedy!
But it’s only the CLL and Achalasia which cause the most problems. THANK YOU 😊
I’m going to spend a couple of hours tomorrow (or rather today) just looking round the site and making a note of any phone numbers so that I can make calls on Monday.
Thank you again for giving me the motivation.
That sounds like a good plan. You might also like to know about The Mighty website, which is an online community based around some 700 health conditions, where people share how they are affected and useful coping strategies.
Wishing you a good Sunday.
Thanks Karin, I hadn’t heard of the mighty website so that is something I will look at when I finish on here.
Thank you for sharing your story and situation. We’re glad you found the LBW community. You’ve already made progress by acknowledging the problem and seeking out support and solutions. It’s great to see all the suggestions and tips from the community. Highly recommend finding local support online or in-person. Many UK hospitals have a Macmillan Cancer Support Centre that can provide you with one-on-one support and information. Some offer group sessions as well. Please remember you are not alone in dealing with this fatigue. It’s hard to describe that is why it can be hard to discuss with your doctor, friends or family. It’s important to speak up as your doctor can check you for any potential medical causes like anemia that could be contributing to it. While for many individuals, cancer fatigue can be due to the treatments but that is not always the case. Completing treatment isn’t a prerequisite to experiencing this level of fatigue. Your described “watch and wait” stage can have an emotional and psychological impact especially with the additional worry of treatment in the near future. Being in a state of worry, anxiety and fear can significantly drain energy levels. You mentioned sleeping problems which can impact energy and worsen fatigue. In the Untire app, we have a lot of education and tips to improve sleep and how to address anxiety, worry and “fear of reoccurrence” where the thoughts of cancer are always in mind much like the “Watch and wait” situation you described. You mentioned the need to lie in bed and being unable to do much activity other than getting to the couch. It’s incredibly important to get moving again. Take it step by step, some movement can help give you energy. It may seem counterproductive but just walking for a few minutes actually can improve energy levels even though you are using energy to move. Stretching, strength exercise and meditation are also other ways to gain energy. Little by little you will see changes. We are all here for you. Please keep us updated on our situation and progress. ~The Untire Team