What helps you cope?

Since my diagnosis I have discovered various ways of coping and was just wondering if anyone would like to share their top tips??
It has certainly changed my outlook on life and in lots of ways for the better.

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In my case I think I set my expectations too high. When I went for check ups with my consultant I used to say that I felt I was taking too long to recover. When you have any other illness and you finish your treatment you carry on with your life as before. After cancer treatment has finished your body and mind has to repair itself. My body had certainly had a battering, but I didn’t appreciate that.
Now I am more realistic. I plan, where I can, to do something then rest. If I have a big event I try to rest the day before and after. If I have a day when I just watch tv or the birds on our bird feeder I don’t beat myself up about it.
Don’t think it is easy, because I do have times when I get angry and frustrated because I have had to give up so much that I used to enjoy in another life, but then I think about the good things I have gained, like being able to spend more time with my grandchildren, and deepening friendships with people that stuck by me and encourage me.
The best advice I can offer is to be kind to yourself, and take on any offers of help

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I suppose getting to know myself has really helped, it’s a daily wonder and I know I get fatigued by overdoing it emotionally as much as physically. My ways of coping are trying to plan and organise myself as much as I can. I do sometimes choose to do something that I know will set off my fatigue, but then I try to block out the next 48 hrs so I can recover. I try to do most things in the morning and certainly not in the evening. I am a girl for a little nap in the afternoon given half a chance, for me it does wonders. I try not to set myself up for failure especially I know who can give me emotional support and who cannot. I realise I cannot make another person change and I am a lot more accepting of others ‘funny little ways’. What goes on whizzing around in my head can be my biggest enemy. I also believe in fresh air and exercise for clearing the head and energising me. I love people and talk to everyone and that social interaction really gives me a buzz. I try to look at things positively and not negatively and I certainly appreciate every single day and everything I have.

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Its interesting to hear both you @Erica & @Pisces56 talk about planning for rest as well as planning activites. Seems such a simple thing, and yet I bet these are things you aren’t encouraged to think about during treatment or while living with blood cancer. Have your family adjusted well to your more carefully planned activity days/rest days?

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Hi Dawn, my family have adjusted well to my differing ways. I sometimes have a nap in the afternoons and my husband also finds it beneficial for him as well. We often like different TV programmes in the evening so my husband is more than happy for the peace and quiet and for me watching what I want in the bedroom. We were never great evening socialisers anyway and friends and family know ‘I do not do evenings, but I can sure do lunchtimes’ and they have adapted well to my needs. My husband has a few evening social events with charities he works for and is happy to go to them on his own because they all know my situation. For one annual charity dinner of his I go along during the day and help setting the tables etc… To tell you all a secret he uses me as an excuse to get away from meetings early sometimes and for not taking on extra commitments and everyone thinks what a caring husband!

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Hi @DawnBloodCancerUK. When I was going through treatment 10 years ago I didn’t have a CNS, but then again I could only do what I could do, and as I needed a lot of help getting around and with simple things like cooking meals I qualified for Disability Benefit. Since I finished treatment I had a period when I gradually became more able to get about, and do more for myself, but the last two years have brought more complications post treatment, which means fatigue is an almost constant. My children are adults now and are pretty good. They are very good at jollying me along if I start feeling sorry for myself. I look after two of my grandchildren (4&6) occasionally, and they are very active, but pretty good when I explain that I can’t walk any further etc, @Erica your husband has found the silver lining to your diagnosis

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It sounds like your husband has found a silver lining! It certainly sounds like you’ve both got a balance of busy and calm - and working in an afternoon nap is something I approve of!

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Yes I did the same but I guess its only natural to think that as we have nothing else to compare to plus no one tells you that recovering will take months or years and even then you will be different. I spent months feeling angry until I started to accept things. The chemo I had for AML was extremely high dose and toxic so I don’t know why I thought I would bounce back!
I try to do the same as you Louise though my daughter was 8 when i was diagnosed so I find running around after her a challenge. Plus I had to go back to work part time.
I totally agree with your advice

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Thanks Anna. Not being able to return to work is another story. They had kept my job open, but when I lost my hearing and was having multiple relapses, after a year I handed in my notice. It has been recognised by DWP that I will never be able to work, so no longer need medicals, and I was able to access my works’ pensions early. I was very angry that my retirement had been forced on me, despite knowing in my heart that I could never do my previous job. Well done on keeping all your plates spinning

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Sorry to hear your story, but it sounds as if you have good coping strategies. The fatigue is crippling sometimes. It comes from nowhere. I wonder if it’ll ever go, but in the meantime I also try to adjust to allow it! It’s hard though, because once in remission there seems to be a presumption that remission = feeling absolutely ok, which unfortunately for many of us is not the case. I’m curious about the fatigue. Is it the blood cancer, and if so what exactly about it is it that causes fatigue? Or is it the treatment? I suppose technically both the disease and treatment damage us? Is fatigue as common outside of blood cancer with other cancers?

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@MissP143 I think most of adjust to a new normal. My energy levels have never recovered to what they were, but then again my lymphoma and its treatment caused a few permanent problems. Each person is different. Some have recovered enough to cycle from London to Paris this weekend, Travelling on Eurostar is exhausting enough for me!

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Hi, you are asking the million dollar questions, all I can say is I have CLL and the fatigue was one of the symptoms I was diagnosed with in 2003. I have been lucky enough to have been on watch and wait ever since and I still have the fatigue which can come on instantaneously or between 24-48 hrs after I overdo it emotionally or physically or both. I definitely do not deal with what stresses me well.
I find fresh air and gentle exercise help and oh, and I occasionally have a nap. Look after yourself.

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I am so pleased you have said what you have in your reply because I feel exactly the same, the crippling fatigue, sometimes I could cry. Actually I had a really bad day last week when even the smallest thing was almost impossible and there seems no rhyme of reason because I feel ok today. Then as you say there is the presumption that remission means that you are ok again.

I’ve never been able to be able to get to the bottom of the causes… my consultant just tells me ‘Anna you have had the most aggressive treatment, stop being so hard on yourself’. I read that the chemo and Leukaemia can damage the bone marrow permanently affecting how it functions so maybe the body isn’t as efficient any more? Or the months of treatment and inactivity means muscle wastage so you need to rebuild from scratch… so all of these things?

I do know that blood cancer treatment is particularly tough compared to other cancers. I have also found that when I am eating more nutritional food I have more energy but then cooking from scratch, shopping for fresh food etc required time and energy so I can’t always do this … so its a vicious cycle!!

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Oh, Anna, Fatigue, I so know that feeling of even the smallest thing and I feel like bursting into tears. I just do not deal with things that personally stress me emotionally and physically well and if I am overtired as well………

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Hi Anna and Erica @AnnaMam @Erica Anna, no wonder you are so exhausted after your preparation for your Impact Day talk! My consultant also used to have to tell me to stop being so hard on myself. I wish someone had told me how debilitating my treatment would be at the beginning, so that I was better prepared for the complete meltdowns I had in the middle of the street, or in the supermarket. I once said to my GP that I felt as if I was suffering post traumatic stress, and she said that I was! I had been fine all through my treatment then just could not stop the tears (and this was before my multiple relapses). Now my meltdowns occur when I have to cope with a new ailment…is it age or treatment???

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I think a lot of us don’t deal with this emotionally while we go through treatment. It’s too much on top of the physical side. I only started my emotional journey after treatment and at a time when friends and family had all come to terms with it all and were congratulating me on finishing chemo and messaging me to say I must feel great. I felt empty. For me the emotional side and adjusting to the new fatigued and slightly paranoid hypochondriac me has been as difficult, if not more so than the treatment.

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You really show so well how we all go through this experience in different ways and at different times and familes often think after treatment we are ‘cured’ and everything goes back to before diagnosis. I think it is also so true that sometimes the body can only go through treatment physically and then afterwards the emotional side takes over and that’s when it can be difficult for some relationships. My husband doesn’t do emotions so I have good friends that can be there for me emotionally. Emotions are not logical, when I should feel fulfilled I sometimes feel empty. Also our bodies go through so much it takes a long time to recover and settle down to a life being fatigued. Please tell us more about your emotional adjustment?

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I felt a little relieved when I was DX. It meant I wasn’t losing my mind, and I mean that literally! A year before I’d gone to the doctor to ask to be tested for early dementia (I was 43), as it was becoming more frequent that I would forget words. Like door, window. Things that were obvious, easy. I’d regularly forget them. The doctor asked if I was tired, and working too hard. Yes, I was. So the doctor said that was it, and not to worry.

Things obviously worsened as time went on. More and more symptoms that I didn’t link together. Dizziness every day from which I’d almost fall down the stairs at work - I celebrated it as I self DX it as being down to low blood pressure, which is a positive, right? Breathlessness that I blamed on not being fit enough and so i tried to compensate for by going to the gym more. But I knew I was going backwards rather than getting fitter. Being unable to stand on public transport and feeling like I’d projectile vomit when I did. I’ve always suffered travel sickness, so I thought maybe it’d got worse as I got older. Hideously heavy periods that I thought were a sign of menopause. Athletes foot that wouldn’t go, no matter what creams and powders I invested in. Bi-annual coughs that would last for 10-12 weeks at a time. Getting up 3x a night for the loo and barely being able to drink a full can of pop - it made me do more Pilates to ensure my pelvic floor muscles were strong for those times I only just made it to the loo!

And all the time the ever increasing tiredness. All I ever wanted to do was sit down. Anything else was too much. I began to think I had turned lazy. I also became grumpy. It began to feel nearly normal. Except that I was compensating to allow for it. I stopped wanting to go out, to drive, to walk up the road. I couldn’t be bothered. It was just all too much effort. Literally. I began to get down. I used to make jokes about how no one had warned me turning 40 would be so rubbish.

So to be told I had leukaemia meant I wasn’t losing my marbles. And to be told it was not a bad one to have and was exceptionally responsive to treatment, and I would probably have normal life expectancy was a relief. What wasn’t so great was being told it is incurable, and that I also had a higher risk with this of developing a secondary cancer. Everything has a flip side I guess. I’m blessed in comparison to many others on this journey, so I mustn’t complain. But it doesn’t mean I have to be happy about it.

So, I started on my journey. I had chemo as an outpatient, and despite being severely neutropenic before I even started treatment, I managed to avoid being admitted to hospital with an infection. It was a lonely summer. I worked from home which gave me a structure to my day and something to focus on. The chemo knocked my internal thermometer so whenever I’d be feeling unwell it was difficult to distinguish between what was a chemo side effect and what might be a fever that I needed to get myself to A&E for in case of neutropenic sepsis, as my body temp was always too low. It was a daily mind battle to work it out, as I was desperate to not be a bother unnecessarily.

The only times I would leave the house would be to walk up to the hospital twice a week or meet my other half from the train a stop early so that I got some exercise. I used to shuffle along, coughing and panting. Occasionally I managed to go to the gym at the w’end, when it was empty, and I felt I could anti bac spray down everything in peace and without germy people about. I spent hours cleaning every day, but never getting that much done, as it was so tiring. The whole time I had treatment, the focus was on the practical side of things. I didn’t have the physical or mental energy to process my diagnosis at that time. It was all about not ending up with an infection that could kill me.

Once I finished chemo I didn’t feel relieved at all. Yet all my family seemed to assume I would be, as if it was the only hurdle I had to conquer. I simply felt that it was phase one ticked off. And now I had to pray that the chemo would work its magic and that my blood counts would start to improve.

I didn’t then go to the hospital for 2 months, during which time it was like my baby blanket had been snatched away. I was still housebound but now I had no regular trip out to see familiar faces. I missed going to the hospital. I felt that no one outside in my real world understood.

I began to feel angry. Frustrated. And more isolated and lonely. On the flip side, i began to have the odd day when I felt like a new person, and had more energy than I’d had for 2-3 years. It made me realise how ill I had been, as the contrast was incredible. But for each good day I’d then slump, as of the good day had drained me, and my mood would turn as well. I craved the good days, and I had to believe there would be more, until good days outweighed the bad. Then, just as I was beginning to reconcile the emotions, I was told I was in remission one month earlier than expected. That news was amazing. Utterly overwhelming. I felt elated.

Then the paranoia set in. 3 months after my remission date I was still suffering fatigue, to the extent that some days I’d walk in from work, sit down with my coat and bag still on, and fall asleep for 3 hours. I didn’t want to feel fatigued. That was something I put in the being ill box, not my now being well box. My consultant was ok for me to go to the phillipines for a wedding that we’d booked flights for the week before I’d been DX, but I couldn’t get insurance. I spent the entire trip on edge. My counts didn’t improve. They hovered along the bottom end of normal. I began to feel panicked that they weren’t increasing, at all, and that I had no buffer for when I would relapse. Then i began to believe that perhaps I wasn’t truly in remission, and that if I’d had another bone marrow biopsy it’d have told a different picture.

I didn’t feel that i could be honest about my fears. When I’d mention something in passing I’d feel that people were dismissive. Perhaps I wS too touchy. Who knows. I still feel quite guarded about my emotions.

The oddest thing I find about all of this is that a lot of the time I can almost believe it was a bad dream. Until the tiredness hits me and brings me back to reality with a bump. With every day that passes, I’m one day further into remission, but I’m also one day closer to relapsing. I celebrated my cancerversary in June, as I didn’t know what else to do. I didn’t want that date to be a negative. I wanted to focus on the fact that my DX meant I’m alive, when others aren’t so fortunate. I had a lovely day. With my other half who I love dearly, and friends who made me laugh all day. I cannot begin to imagine how this journey would be without a support network, in some shape or form.

I filled out a stress questionnaire two weeks ago, and I scored better than I did 2 years ago, in spite of that fact that I now know that I have leukaemia. It makes sense that I should be more positive - the all consuming tiredness contributed to my stress, it made everything much worse, and now I know what I have, I have started to implement lifestyle and career changes that have already improved my outlook and will hopefully mean the dark days lessen, or are at least more manageable.

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Hello @MissP143 That first sentence could have been written by me. From being someone who rarely troubled the doctor i spent every month, then fortnightly, visiting my GP who was doing everything to get me diagnosed…blood tests, x ray, referral to cardiology, then dermatology, then a referral to another hospital which admitted me pronto. The relief that I had a diagnosis was tremendous. Mind you it was a bit of a conversation stopper on the cardiology ward when people were comparing what operations they were having (bypass, valve replacement) and i upstaged them all by saying they had found a tumour pressing against my heart! When I returned to the cardiothoracic ward after my operation, the nurses referred to me as miracle woman, because I could walk without getting breathless, could get to the loo before having an accident, and speak in sentences again. Some patients who had seen me when i went in asked to see me before i left because they couldn’t believe the change.

I think it is good that we have this forum, because we discover that we are not alone, and we have so much in common. so much of what you have written applies to me. I too can relate to that “It didn’t really happen to me” feeling, but am reminded each day when i take my medication for long term effects, and feel constant fatigue, that it is happening to me.

The fear subsides, but can strike back unexpectedly. Every ache, pain, lump, becomes a major event. That is when I need to listen to some music, and watch the birds in our garden

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That sounds like an absolutely incredible journey you’ve been on. I’m stunned! Isn’t it amazing how our bodies can pull through? Your reference to watching the birds in the garden is so apt. I agree that having this forum is fabulous, but also being able to have something simple and beautiful to take your mind to a better place, such as watching the birds. On the days I work from home I can see the squirrel that lives in the tree at the front of our house. It’s nice to see him potter about and I forget work, or whatever, for that moment.

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