Thank you @Erica and others for your openness and honesty. It really does help to know that I am not alone in my mix of emotions. I liken it to being in a washing machine! I have just written this poem to try to express how it feels. Hope it helps others.
OUT OF CONTROL
Like a washing machine
Full of dirty clothes
My emotions sometimes
Seem out of control.
Filling, emptying
Occasionally still,
Rinsing, spinning
Frighteningly real.
One moment I am sad
And I am not sure why,
Overwhelmed
By the pain inside.
Then I get frustrated
By my circumstances,
Only too aware
Of terminal illness.
So many feelings
New and strange,
Disturbing thoughts
I find hard to explain.
Uncomfortable sensations
I can no longer hide
Anger and resentment
I try to disguise.
Confronted once more
By family dynamics
My heart beats faster
And I start to panic.
Wishing there was someone
On those difficult days
To give me a hug
And say it’s okay.
Just when I think
Things are settling down,
Along comes something else
To destroy my calm.
I long for the cycle
To come to an end,
For some peace to fill
My troubled mind.
Oh Willow your poem describes my washing machine all too well.
Absolutely brilliant, wow.
I cannot thank you enough and I am sending you a great big supply of hugs to put in your pocket for you to use when needed.
Please keep writing your poems for us.
Hi @Dan0921, apologies in the delay in answering your question.
Primary Myelofibrosis (PMF) and Chronic Myeloid Leukeaemia (CML) are diffferent diseases but they can have a similar initial presentation in both the patient and when studying the cells. The most reliable test to distinguish CML from Primary Myelofibrosis is cytogenetic analysis for the Philadelphia chromosome which is present in CML.
I do hope this helps, let me know if you need to know any further information.
Kind regards
Gemma
Kibbit,
Just a suggestion but ask for a different brand of Imatinib. I have had mine for ages with all kinds of brands but find that Teva brand upsets me making me feel sick and travel sick. This even if I eat plenty with it. The hospital pharmacy has a record of this and does not give me that brand. It is not the Imatinib as such but apparently the coating which is there to protect your mouth and throat. Try to think back and see which brands you have had.
Fingers crossed!
Love Jo
There shouldn’t be anything to feel guilty about @Kibbit just because you had a less severe reaction to your treatment than some other people. I did too and I felt grateful for that and for the speed with which I was able to return to work. I completely understand your relief on being diagnosed as that’s what I felt. It took a while to convince anyone that there was anything wrong with me. i just kept getting told that all I had was lower back pain and I should stop being so lazy and do some physio. In actual I had a fractured backbone caused by Multiple Myeloma and it would have been impossible for me to do the kinds of exercise they suggested without ending up a cripple for life. When they finally confirmed that something was wrong I just thought, “yeh. Let’s get on with the treatment and nail this thing so I can return to normal as soon as possible”. Good luck ongoing!
I have been feeling guilty as I have been feeling rather poorly and depressed and haven’t wanted to do anything other than keep myself washed and dressed. Living life had become a great exhausting battle. I finally got a telephone appointment with my GP and he thinks my statin dosage, prescribed by the hospital, is much to high and causing my symptoms. In other words it was poisoning me. My body can come up with enough problems without the NHS overdosing me. The news these days is most depressing, all death and drought or floods, disasters of all kinds, most of the tv programmes are full of violence and aggression. I have just ordered some candles in case of blackouts.
I am still having fun with my air fryer, Saga magazine had an article praising their use for saving electricity and showed a picture of the one I purchased. My husband has managed to get to grips with it and delighted that we don’t have to heat a whole oven to cook a couple of chops in a healthier way. It crisps my morning bacon to perfection whilst I do my fried egg. I have also been busy planting dwarf daffodils, dwarf Iris and crocus in terracotta bowls so that I have something to look forward to in spring. Also about to plant my tulips as I adore that blaze of colour in my bare garden. The leaves are beginning to change colour so I am going to sit back and enjoy autumn. Marylin
Oh @Marylin I think you were entitled to feeling rather sorry for yourself and I limit myself to watching one news a day.
As you say your body was poisoning itself, you must have felt really rough.
The Air Fryer has definitely been a brilliant purchase hasn’t it.
I bet your garden is going to look a blaze of cheerful colour next year.
Look after yourself
Hi Kibbit,
I have been wondering how you are doing. I hope things have settled for you a bit and that is why we have not heard from you.
With love from ‘ the other Jo’
