Its now been 9 months since my bone marrow biopsy confirming my Chronic myelomonocytic leukaemia (CMML) Diagnoses.
I was unwell with constant infections, tiredness itching and generally feeling unwell.
I was hospitalised on a few occasions, nobody really looked at my bloods untill 1 day an amazing consultant studied my blood tests results over the last year. He referred me to the Haematology. Team.
Since being under this amazing team and being constantly monitored and being prescribed Hydroxycarbamine my syptoms have improved especially the sweats. I am now on a higher dose but side effects are ok.
Yes I have not so great days but I am lucky in as much as I have a loving pro active family. I still travel, I do take a small electric wheelchair on all holidays. Just in case I am taken unwell. I cannot get health insurance at all despite accepting the fact that I would except exclusions for this condition. I think this condition could make some people feel very negative but my point of view is ,I wake each morning set myself goals, do what I can and dont stress if I cant do everything.
I live for today, keep active, keep smiling we are not alone.
Oh @Bonny16 I am so impressed with the way you wrote your post I reckon that it is jam packed with information and philosophy.
It sounds as if you have a brilliant medical team, which makes such a difference, and a really supportive family, all are priceless in my book, plus a travelling electric wheelchairâŚ
Unfortunately travel insurance is often a problem and often very costly, if you can actually get it.
I think it is so difficult to keep it in the day, but it really helps if you can.
I was diagnosed with Chronic lymphocytic leukaemia (CLL) 21 yrs ago and if I had obsessed that I would never see my son get married and have children I would have lost all those years as he is now 51 yrs old and never got married or had children (that I know of!!), but the main thing is that he is happy.
Yes, I have my negative days, feeling terrible days and feeling sorry for myself days, but without those days I would not appreciate my days with gratitude.
In the words of Rod Stewart âlove the life you live and live the life you loveâ
I and @Jimbo165 (and some others) also keep smiling so you are definitely not alone, Please do keep posting how you are getting on, the negatives and the positives, I find that I can say how it really is for me on here.
Good evening @Erica and @Bonny16, I hope you are as well as can be. I have a different issue to you Bonny16, as I was diagnosed with Essential thrombocythemia (ET) coming up to 7 years ago now and have very recently (4 weeks ago) started on Hydroxycarbamide after 6 1/2+ years on Pegasys injections.
So far I have avoided any stays in hospital, other than day visits for my Bone Marrow Biopsies and an endoscopy, and I hope to carry on with this avoidance!
I have to say that my biggest side effect is fatigue, and that this feels worse on the Hydroxycarbamide than it did on the Pegasys, something that I didnât think possible. I am now questioning whether or not I can carry on working, at least full-time, but I guess that time will tell.
As dear @Erica mentioned, I am one of the believers in smiling and use this as my own personal âweather vaneâ regarding just how well I am feeling, or not! My work colleagues know when I am feeling rubbish/rough and to âstay out of rangeâ after their initial enquiry as to how I am!
I am currently being very closely monitored and seeing the consultant every 2 weeks, which is both good and bad at one and the same time. Although at the last appointment my consultant did say that " we are running out of options now" which is not something that you want to hear in hospital.
Meantime, take care, stay safe, be kind to yourselves and keep on smiling.
Best wishes,
Jimbo165
Hello @Jimbo165. Sorry to hear that your fatigue is worsening. I feel for you especially when you are trying to hold down a full time job. I know your philosophy in life is to keep smiling which is very admirable and I understand it works for many people. I am a great believer in trying to stay positive and find things to be grateful for in each day.
However, I just wanted to put another view point that some us werenât âallowedâ to never smile or show any so called negative emotions which, I believe, can be damaging. Here is a recent poem I wrote called VOICE OF HOPE âŚ
VOICE OF HOPE
Iâm smiling on the outside
Like I always do,
Cos thatâs what the world
Expects of me and you.
âHow are you?â they ask
But they havenât got the time,
All they want to hear is
âThank you, I am fine.â
If I ever get the chance
To explain a bit more
Straightaway the answer is
Whatâs been said before.
âHave you tried praying?â
âThereâs no need to be scaredâ
âPull yourself togetherâ
âFretting gets you nowhere.â
Throw-away comments
Meant to ease my mind.
(As if I hadnât thought of that
Or heard it countless times!)
An alternative message
Is what I need to hear.
Words of loving kindness
Ringing loud and clear.
âItâs okay not to be okayâ
âItâs okay to be upsetâ
âTrust me when I say,
Brighter days are up ahead.â
Iâm crying on the outside,
Crying with relief.
At last a voice of hope
Has spoken truth to me.â
Warm wishes, Willow x
Oh @Willow I have tears pouring down my cheeks here, I am even more convinced now, as my sister always used to say, that I was swapped at birth.
She was meaning more because my parents and she were all brown haired and eyed and I had blonde hair and blue eyes.
Yes, we were brought up in a very similar way and I remember those sayings so well and the good little girls donât have or show negative thoughts and feelings and good little girls are seen and not heard.
I reckon stuffing thoughts and emotions down has never helped me health wise either, although this is my personal thought, not a medical opinion.
I have that default setting of saying âThank you, I am fineâ.
I am so grateful for our forum where I can say how it really is to be me and I know others will understand and I have you @Willow to offer me poems like this, you know just what I need and when I need it, thank you so much, please do look after yourself as well as you do us all xx.
Good afternoon @Willow, and thank you for your kind response as well as your ode to Hope, goodness knows we all need some of that these days, whether we are living with cancer or not.
Iâm sorry that you have been in the position of not being allowed to smile or be the âreal youâ because of societal expectations but I do hope that you have been able to express your true self through this wonderful forum. I know that I find it so much easier to be more open and truthful (if only to myself!) on the forum, probably because I am fairly sure that my daughters arenât âfollowing meâ on here. They tend to get a slightly sanitised version of whatever the consultant has said unless one of them, usually No4, has been able to accompany me as my âhandlerâ.
My usual response to the question âhow are you?â tends to be âdo you really want to know?â which often puts an end to that particular side of the conversation before moving on to what the questioner wanted from me.
Dear @Erica, I accept that your personal thought isnât a medical opinion but I truly believe that you are totally correct and that the wilful and active suppression of thoughts and, more importantly, emotions is not good for the mind or the body.
My thoughts and best wishes to both of you, and every other forum member and user and, if I may quote the late great Dave Allen, may your God go with you.
As always, take care, stay safe, be kind to yourselves (Copyright @Erica) and keep on smiling.
Best wishes,
Jimbo165
Thank you @Erica and @Jimbo165 for your kind responses and understanding, I agree with you Erica that suppressing how I am really feeling has not been good for my health, physically as well as emotionally and psychologically. Out of interest I remember one significant event when I was four years old. We were at a charity event where the then Prime Ministerâs wife, Lady Macmillan, was present. Me and my twin sister were unexpectedly asked to present bouquets of flowers to her. My sister, being more confident, was fine, but I burst into tears and couldnât do it. My father was very cross, not only had I showed him up by crying in public, but I had failed to do what was asked of me! I remember it clearly as it had a deep impact on me. There was another incident aged about seven when I badly squashed my thumb at Brownies. The leader asked âWhereâs your Brownie smile?â I received the same message that as far as adults were concerned it was wrong to cry even if you were scared or in pain! I find expressing myself in poetry form really helpful and I have an excellent Therapist who is helping me. Like you, Erica, this forum is somewhere where I can say how it really is which is such a blessing. As you said Jimbo165, may God go with us all on this forum into 2025. Thank you again. Warm wishes, Willow
Beautiful poem Willow you write so well with such experience and depth, expressing many of our feelings thanks for sharing once again - every best wishes to you
Thank you so much @Jilly20 for your kind words. It is an added bonus when my poems encourage others as well as benefitting me! Warmest wishes to you, Willow x
Oh @Willow yes, memories from an early age. I must have been about 7yrs old and my sister 3 yrs old when the cat died and my father was pleased with me as I did not cry, and my mother and sister did.
My sister and I were at the same school soon after that time and I got called into the headmistresses office, the shame of it, in front of everyone, and she said that my sister was too slow walking down the stairs and slowing others down and I was to do something about it, I did not dare tell my parents as I felt that it must be my fault and I would be told off !!
I also went to a party and walked into the handle of a pram and got a black eye and kept quiet because I thought I would get into trouble and I did.
Those messages, I can still visualise all 3 occasions now and the thoughts and emotions they evoke.
I even get angry at your âwhereâs your Brownie smileâ @Willow !!
Hello Willow, such a beautiful poem, like you people ask me daily how I am, I am not sure they really want to hear the truth, so I also smile and say that I am fine.
We take one day at a,time and do our best to live as normal as possible, meds allowing us to do so.
Take care lovely.x
Thank you so much @Bonny16 for your kind message. Thinking of you and sending warmest wishes. Willow x
@Jimbo165
Morning Jimbo I to have Chronic myelomonocytic leukaemia (CMML). Symptoms arrived January 22 diagnosis May23. Thrombocytopenia 1st symptom then neutropenia. At time of diagnosis NUTROPHILS were 0ne. Half of the normal level.Platelets 46. About a quarter of normal range My diagnosis read probably Chronic myelomonocytic leukaemia (CMML). The thing that surprises me is fellow sufferers have a dreadful time whilst my experience is if it wasnât for the abnormal blood tests I wouldnât know I was ill. In fact I have not had any health issues since symptoms started in January 22. So three years from first dodgy blood test and no changes. Hopefully that experience doesnât deteriorate.
Admittedly I did have a TIA but as far as I know that was not linked to Chronic myelomonocytic leukaemia (CMML) two weeks ago. One test that has worried me is my cholesterol level has now fallen to 1.8! After the Tia stroke unit wanted to prescribe aspirin. Haematology said no due to platelets at 42. I count myself very lucky to feel well and still on watch and wait. Anyway have a happy new year and stay positive. I find the stress of blood tests very unpleasant. But as yet my experience nothing like as unpleasant as many
Best wishes unclejack.