I wanted to start this thread so we can share ways of coping with the fear that comes with living with a blood cancer. Whether we like it or not it is there and I think it will be helpful to help each other with techniques etc that have worked or things to avoid
For me I have found talking very helpful, saying the words out loud, though hard, to someone else was surprisingly helpful, like a big relief because it wasn’t inside my head anymore.
Repeating the words ‘Its ok not to be ok’ because beating yourself up when you are having a bad day really is counter productive and just adds to the negative thoughts.
Watching something funny on TV or laughing with a friend… it is so true that laughter is a good medicine. when I’ve been struggling and have found something funny, gone to see a friend who always makes me laugh and it has really helped lift me up.
Doing something active like going for a walk or to the shops or on an errand.
Doing something I enjoy like crafts or having a good clear out of a messy cupboard or wardrobe.
I have had some counselling which was very helpful, I had to pay myself as NHS would not provide anything.
I am useless at coping with fear, once it gets a hold in my head it just whizzes round and round. The are’s, the could be’s, the might be’s, the what if’s, the why me’s, it is going to be, help etc… Meditation techniques just don’t seem to work for me no matter how often I try them. I am not good at voicing my fears, I usually stuff them down inside which I know is not good health wise. I eat on feelings, I know any excuse.Good friends are priceless and really help. Music does help block my fear feelings. Reading helps but less. Walking even less because I take my head with me. I think counselling, with the right counsellor, helps. I am really interested to hear from others?
Today it is 11 years since I was finally diagnosed, hospitalised, and my treatment began. In my case I had a massive tumour in my chest and that needed to be removed. I was relieved that the cause of my ill health was finally diagnosed, and gave my tumour a name. Some of my close friends were in on the joke. The fear did not set in until I had my first relapse, and then it was constant …every itch, every time I struggled to breathe I thought it was back. Sometimes it was, so I couldn’t think that I was being over anxious. Over the years I have got better, but now I am into the unknown realms of long term problems. For a time I had medication to help me over the worst. Now my GP is really good at calming me, and checking out any problems. This is where I wish I had somebody (CNS) that i could occasionally call upon. As time has gone on there are fewer medical people who have travelled my road with me. Even my next check is with a new consultant as mine has retired. My main calming influence is my husband (hugs and booking a treat to look forward to goes a long way) and listening to music while I zone out watching the birds on our bird feeder
Voice them! I’m so lucky to have a partner who knows when I’m having a panic and talks me through it. Even though my transplant has been a success, any little symptom like pre-diagnosis puts my mind into overdrive. Surprised that you couldn’t get counselling on the nhs. Kings in London offer post transplant groups and access to a counsellor as part of the long term follow up. Might be worth checking that out. I keep myself very active so have little time left to dwell on things. It’s just those times in the middle of the night…
Hi, Yes, doesn’t every little symptom send the mind into overdrive and I get a sick feeling in my stomach. I also so agree they say the darkest hour is just before dawn and I also find my washing machine of a mind goes into overdrive at that time. I think most really big specialist hospitals and/or local councils do give brilliant extra facilities and aftercare, but sadly there are so many patients that live in more isolated areas that use hospitals that do, do not or financially cannot provide certain services and when you are not feeling well I don’t suppose I would feel like or perhaps be able to travel longer distances. I also think keeping active is so important for so many reasons like getting out in the fresh air, interacting with people, keeping the mind and body active etc. I think so many of us share the same fears, thoughts and feelings so please keep posting.
Hi Erica,
I sort of know what you mean. I tend to keep everything inside. I have recently have lost my mum after caring for her for some years and all of a sudden it’s like everything is catching up with me. My diagnosis last year of Smouldering Myeloma was pushed to the back of my mind except for “blood test time” every 3 months. Mum was my priority. Now I am having time to think about my situation. I am still grieving for mum as it’s only 4 weeks since she passed away but my thoughts are all over the place plus my blood tests are due again and I wonder if all the stress I have had over past few months with mum have affected anything with me. I hope not. Reading is my escape or playing Scrabble on my tablet , going for walks.
Hi Yvonne, yes, I believe the body just keep going and coping until it says enough is enough and then I know my fears, thoughts and feelings catch up with me and go into overdrive. You seem to have great insight and I hope you find this community forum useful, I know I do. Don’t forget the Bloodwise support line is there if you need it (details above), Be kind to yourself you must be in shock so much has happened to you over the last year or so. What was it like finding out about your diagnosis whilst caring for your mum for some years?
Hi Erica,
It was very difficult finding out I had Smouldering Myeloma especially when my consultant said it will progress to become active at some point although obviously cannot say when. I just hoped that it would stay as asymptomatic as long as possible with looking after mum. I did speak with Social Services re putting extra carers in if I should need to start treatment. I didn’t tell mum immediately but I did tell her the basics but because she in recent months was starting to develop Dementia she forgot what I had told her. She deteriorated suddenly 4 weeks ago and I was with her when she passed away. I am just glad that I have stayed stable so all my energies went to caring for mum. I do worry that all the stress may have an adverse affect on me and my husband Steve worries also about the affects stress can have on my cancer. I just have to hope that all will stay okay as my coping mechanism isn’t too good at the moment.
Thank you for listening to my ramblings Erica.
Yvonne xx
I’m not living with blood cancer, but I am living with the aftermath of it.
I think talking is the best way of dealing with fears though. I am lucky (sort of) in that I have a brother in law who went through treatment for Myeloma 2 years ahead of me and we have talked a lot, because we both understand to go through the tests and treatments. Since this forum has arrived it has provided another way to discuss and realise that you are not alone in how you feel.
Family and friends do their best to understand, but they don’t actually know what it’s like.
I try spend as much time as I can doing things that I enjoy with people whose company I enjoy.
I’m gnerally doing OK, but get frustrated that I can’t do certain things that I used to be able to.
I try not to think negative thoughts, but somethimes you can’t help it, such as when another part of you stops working properly.
Hi Nick, yes, you are lucky (sort of) to have a brother in law that went through treatment for Myeloma 2 years ago. As you say family and friends do their best to understand, but they really cannot know what it is like. Often people think that you have had treatment so you are back to your ‘normal’ now. As you say it can be so frustrating and depressing when I cannot do what I used to or I get fatigued if I do. I definitely do more things I enjoy for me now. I also find this community forum so supportive and informative.
Yes I was surprised too but in my area there is no funding and the cancer recovery package is not available. It wasn’t offered to me while I was in hospital, All CCG’s in my area are in special measures due to being massively over budget. I am very proactive and believe me have looked at this in detail. I live in a rural area and this is typical for us, to be forgotten and not have the same facilities as the rest of the country.
I completely agree with you.
Keeping my sense of humour has helped me cope with the disease.
I’ve just completed my 51st monthly cycle of Azacitidine.
I’ve made many friends at the hospital after attending for treatment 5 days in 28.
It’s like whole new social life where I can have a laugh and joke with all the staff, from the Senior Matron down to the porters.
I cannot stand sitting in the waiting room pre treatment as the majority of the patients with a few exceptions are so miserable. I wander all over the hospital until my treatment is due.
I treat my cancer as a big joke.
I read a lot and lose myself in a good book.
I also watch old b/w films on Freeview and trashy action films, Stallone etc.
I watched the latest Captain America film recently, totally unbelievable story but very enjoyable.
Humour is not a cure by any means but my goodness it lift ones mood. Misery will drag you down!!
I forgot to mention Spotify music app. It’s free but you get ads now and then.
Whatever age you are you can find all the music from artists you listened to in your teens.
I was a teenager in the 60s the best years of my life and I often listen to music from those glory days, a real mood boost
Oh, the glory days of music, some things in the 60’s past me by, but the music didn’t. Yes, aren’t there some lovely medical people to have a laugh and joke with at our hospitals, we are so lucky. Somewhere on this forum are posts about those single acts of kindness.
Thank you so much for sharing some of your tips and tricks to cope with fear. You mentioned a little bit about you cannot stand sitting in the waiting room pre treatment. We hear from some people affected by blood cancer that the waiting room may even cause some fear. Did you have similar experiences within the waiting room?
The fear and anxiety I feel is prior to my pre Chemo blood test.
As each one is imminent I’m scared that this may be the one that indicates that Azacitidine has ceased to be effective.
I’m very aware that this event will occur one day, the more treatments I receive brings me closer to that time.
Once I know treatment is going ahead once again the fear recedes until the next time.
The reason I don’t like sitting in the waiting room, apart from finding it claustrophobic is the overwhelming atmosphere of despair that permeates the room and is all absorbing.
I prefer to wander the corridors in the hospital where I can engage the staff that I have got to know in ordinary conversation, however briefly not related to cancer.
Every day is not just about cancer.
Hi blackhat,
Whenever I go to the clinic there is always a chair reserved for the elephant in the room. You can’t see him but you know he’s there, no one wants to acknowledge him, so we draw the curtains round him and carry on as if everything is perfectly normal.
Alfie
That’s a good way of putting it Alfie.
Unfortunately in my waiting room there is a whole herd of elephants which is impossible to ignore.
I find it thoroughly unpleasant and prefer to keep a more cheerful frame of mind avoiding the experience.
I’m glad it works for you though.
Best wishes
Anthony
Dear blackhat, I totally get where your coming from. I think the problem is you have people at the clinic who are a different stages. There’s the newly diagnosed who are in a state of shock and running on adrenaline, the people like me who have got into a groove and are not letting misery be my default frame of mind, then there are the patients who have had enough and have the thousand yard stare.
It’s a very challenging environment to create a good atmosphere, and since I have been off treatment and only going for the odd blood test, I have noticed how strained the mood actually is . I always made an effort to keep up people’s spirits whether they wanted it or not, I’m sure they thought I was a total pain in the neck, but it’s just the way I am.
Best wishes as always
Alfie
Hi Alfie, I am probably the ‘pain in the neck’ of my hospital. I will always find someone to talk to, whether they want to or not, most do………… I think. Mind you I am the same in the queue at Sainsbury’s, but that is just ‘small talk’.
