So has anyone got tips for dealing with the frustrations of living with a blood cancer?
I have Polycythaemia vera (PV) and been having two weekly sessions of leeches at the hands of the very nice modern barber surgeons but this week, they gave me a break because of the tiring side effects.
I am a fine art photographer who has to drive to pay the bills, so looking at the forecast and tide times, planned my first real location shoot since my car crash and cancer journey started.
Early to bed, even if sleep was not coming, alarm goes off as it is an hour or so driving required to get there for the blue hour and sunrise.
Go to get up and check my watch, I had fallen straight back to sleep and didn’t realise.
In the grand schemes of life, not a biggie but so frustrating.
This was a side effect that helped destroy my relationship with my soon to be ex wife, it was put down to being lazy, not interested in shared time, doing the things we both enjoyed doing together, that she was not important to me, the bed was.
Now I have an answer to the above, it does not make it any easier even now being on my own.
The camera is looking as upset as my wife used to, but trying not to show it.
So back to my question, how have you learnt to cope with the frustration of having rogue genes controlling your life?
A really good question @clickinhistory.
I know when I was working I just worked, slept and ran a home, it is no life.
I think the glib answer is acceptance and adapting my life.
I think it takes a long time and it cannot be forced.
Medical visits do absolutely exhaust and fatigue me.
My day definitely ends earlier, but that’s OK for me, it took me a while to understand how I tick,
My fatigue comes on when I get personally stressed by emotionally, psychologically, physically, medically and practical issues.
My fatigue can come on immediately or up to 48 hrs later.
I function better in the morning than later on.
I believe in being honest with others and explaining how I have adjusted my days and what works for me.
Now this is not a medical reply, but my personal experience, it might be controversial but I am going to say it anyway. I believe in reframing my own wording and behaviour from negative to a more positive slant.
Don’t beat yourself up and be very kind to yourself, you have had a lot of shock events and changes to your life over the last few years.
Perhaps try to start to enjoy your fine art photography again.
No 1 keep posting and really look after yourself
That’s a lovely reply from @Erica
From day one I wanted to go forward living with myeloma and what needed to be done to get into some form of remission
I don’t use any negative words I’m living and I’m alive and it’s so very precious that battling words have no place in my cancer vocabulary
I don’t have any frustration with cancer but appreciate that not everyone is like me in fact there isn’t many people I have come across in real life just one lady on the cancer ward and she would go around sharing her hand cream and she wore brand new M&S knickers on her head she was a breath of fresh air and made me giggle.
We were a ward of 6 and four used to scowl at her 
I took time off work as I got sick pay so that was one pressure off
I don’t have a partner just two adult kids
I took time off work second time around also.
In the beginning of my myeloma journey I kept to a routine up at 7 in bed by 9.30
It’s altered a bit now up by 8 and in bed by 10 I might not go to sleep straight away but I’m resting
On the days I’m too tired I just call them rest days and being kind to myself.
I’m still shielding and I do activities via zoom keep fit, yoga, meditation (anyone is welcome) and I also do mindfullness every other Wednesday with a breathworks practitioner via zoom who works at our local hospice
It’s £35 for 4 sessions and I have been doing it for over year via zoom ( anyone is welcome)
I started in 2018 for 18 months
After my first relapse and shielding Gail decided to put it online a year ago.
Perhaps you and your good lady could do something like this together and just change things at a slower pace
Talking to each other and maybe going through a booklet of your cancer to refresh.
Ask her what she needs then work it out
Can you seek out some counselling together or separately
@2DB and @Erica joys of self employment, no work, no pay 
Unfortunately the is no us anymore, seeing my divorce lawyer the day after my specialist doc visit and then on the road for three days.
Sounds like you have your shielding as well worked as a Viking shield wall 
Never done a 9-5 job, so my hours are all over the place, which is not helpful to a regular sleep pattern.
Since the crash, I have slowly built up my distance, but then the Polycythaemia vera (PV) kicks in like today and I have to stop and rest as I feel the oxygen drop, double check with the watch and app and yep, it is dropping. Sat there on broken tree trunk, listening to the wind and the birds, watching the light play on the tree branches and trying to enjoy it while wishing I was not breathing like an wizened old man.
That is the frustration, from being very active to having a “stop day” not calling it a lazy day because I haven’t the choice.
@2DB did you go private? M&S underwear not cheap 
The walks, the photoshoots and the editing, they are my meditation and my creative outlet and having Polycythaemia vera (PV) stop it is to put it mildly, frustrating.
As you both know, I too hate the media version of cancer and this is not a battle, more of a heated discussion over who is the lead dancer in this and right now Polycythaemia vera (PV) is stepping too heavily on my toes
A meditation from last Summer in the garden recovering.
Groove Salad on the iTunes and maybe a glass of red grape juice helping the chill
good old nhs hospital it’s the people that make it
She also had lovely white stuff pjs crispy white too.
very Dutch Old Masters
Love orchids and light, great fun to shoot and no issues with bad model behaviour
clickinhistory Sorry to hear of your frustration, I fully understand. From being quite active walking 10000 to18000 steps a day I now have to have a nap after walking to my local shop which is five minutes away. Your low oxygen levels are not good. I would advise you to see your GP or talk to the hospital. It might be worth your while to get an oximeter from the chemist as this would give you a more accurate reading of your spo2. I have applied for social welfare as I only get sick pay for a few days. Is this a possibility for you? Your photos are amazing and it’s good they bring you joy and relaxation. Also you are going through a lot personally which can take it’s own toll. Hoping you get help with your breathing soon as low oxgen levels can make you feel exhausted.
@Liz59 because of my fractured sternum after the crash, it was recommended to get a finger oxygen and heart reader. The down side is it does not record, unlike the watch and app. Done a side by side reading and they are pretty much identical in their readings.
I will be raising this with the specialist on Monday as the levels bounce along between 99% and 94% and then suddenly drop to the low 80’s before bouncing straight back. Doesn’t seem to relate to anything I was doing at the time.
It is the blowing like an old man and not realising I am doing it, but that I know is just my body trying to hurry the C02 - Oxygen exchange.
The occupational therapist is looking at possible financial help as part of a back to work research project for people who ended up in A&E over a set date period. They are looking at the gaps in help and the reasons why people who have had a trauma suffer long term issues. All part of the government wanting us to be bright and productive taxpayers as soon as possible
Between her and the phycologist I get as part of the study, they love me and my situation, divorce, major car crash and the discovery of a rare blood cancer. In years to come, I will be patient R in the papers that are written from the study
Thank you regarding my images, being able to carry and use the camera again was and still is, a major driving force in recovery.