Sorry, this is a really bad rant and very long first post and not a good first introduction but I’ll do another post when both of us are in a better mood introducing us both properly at another time.
Hello I’m reaching out for information and possibly support for my partner who has just been diagnosed with Chronic myelomonocytic leukaemia (CMML). Because of other issues he’s asked me to join up to supporting forums for further information and support for both of us.
We can’t make a lot of sense from the information booklet as our knowledge is low grade and the information is too advanced for either of us right now, maybe in the future, I might be able to understand some of it.
Right now are neither of us have any confidence in our local hospital there is a severe lack of communication with them, so this morning typically, they were unable to do a blood test without any drama First off, couldn’t get the needle in, second off couldn’t get the blood flowing, thirdly they left him with him with a bleeding site, (and it’s not the first time they’ve done that)after which they allowed him to leave the hospital One hour later, they were calling him telling him you need to come back to the hospital. His platelet count is only 12! And he’s showing signs of infection, he keeps saying he feels they’re playing Russian roulette with him, he called me from the hospital saying that in spite of being there for three hours they’d only just managed to get a cannula in for his platelet infusion and there had been no mention of antibiotic treatment for his infection.
Google says this hospital only has a 2.5 out of five rating I can’t say I’m really surprised.
Exactly how many platelets are in one bag, somewhere in my mind I’ve got a memory that we were told there were 20 units of platelets in a bag but now he said to me there is only one how can that be? Given that a bag of platelets are not brand-new recently made platelets they only last for seven days to ten days from fresh and it may be three or four days old before you even get them? They have also not mentioned antibiotic treatment for this infection. He is obviously very vulnerable to infection but they have not helped him out in anyway with infection control up to this point.
He will be starting chemotherapy soon and I am pinning my hope that the department that will be administering this will be a lot more efficient and communicative.
Hello @hellodolly and I am so glad that you have found us and I think you certainly can always have a rant (if it was?) on our forum.
This is the one place where you can say how it really feels for you.
I am sorry to hear your experiences.
Blood Cancer UK are unfortunately currently updating their information on Chronic myelomonocytic leukaemia (CMML) .
However the Blood Cancer UK support line is there for you on 0808 2080 888
I will also copy your post the the Blood Cancer UK nurses @BloodCancerUK_Nurses .
Others may be able to share their experiences too.
How are you both coping with your partners diagnosis?
Perhaps this will give you both the opportunity to write down all your fears, medical questions and practicalities ready for your partners next appointment
Please do keep posting as I look forward to hearing more about you both.
Really look after yourselves
Hello time to introduce myself and my partner properly. We are a couple in our early 60s and have been together cohabiting for 38 years.
In February my OH started having chest pains that he said were indigestion then after that that it was an injury but after 5 days I new it was much more and I made him go to hospital, after they admitted him and he’d been an inpatient at our local hospital they did a bone marrow biopsy because he’d had a raging infection and his platelets were only 19 on day one and hadn’t returned to anywhere near normal, after the biopsy they discharged him.
5 weeks later he was back in hospital with another chest infection but he’d been told by then that he had Chronic myelomonocytic leukaemia (CMML) but we both thought it was manageable with blood tests twice a week and some platelet infusions.
Oh boy were we wrong! He had to see the specialist at the big hospital who left him absolutely devastated! He feels that the doctor only spoke about the negative points of his diagnosis and was sobbing at the weekend as he was so overwhelmed with negative thoughts. I’ve tried my best to make him see things more positively but I’m struggling with my own emotions and have not let him see me crying because I don’t know if he can cope with my pain as well as his own.
He’s going to start chemotherapy in a month and I’m pinning my hope on this that it will give him a lot more time, but when you’re told that it might not work at controlling the Chronic myelomonocytic leukaemia (CMML) and he might only have 18 months is devastating.
I’m hoping that I can find others with this condition that can say “I’ve had this for years now with control by chemotherapy and I’m doing alright “ but there are so few people with it that it’s been difficult to find anyone, until I came here.
We’ve got so many questions about this condition and treatment and I think that I’ve found a valuable source for us here.
Oh, thanks so much for taking the time to tell us a bit more about you both @Hellodolly .
I have Chronic lymphocytic leukaemia (CLL) and I was diagnosed 20 yrs ago at 53 yrs old.
At that time I had a life expectancy of 5-10 yrs. My 70th birthday was my best ever birthday.
When I was diagnosed I came home and wrote my will and funeral music.
I am not surprised your partner was sobbing at the weekend.
Don;t forget that you have had the same shock and by personal experience it is better to let my feelings out than stuff them down,
I don;t know but it might be a bonding experience if you are a team and can both share how it is for you too.
It is natural to to have the ‘what if’s’ etc.
None of us can foresee what the future will bring.
Yes, use us and I have found that no matter what our diagnosis is and patient or partner we often share very similar fears, emotions, thoughts and practicalities, but rarely do people ask how the partner is,
Be ever so kind to yourselves, I was in shock for a long time.
Please do keep posting and don’t forget the Blood Cancer UK support line if either of you need it on 0808 2080 888
Be kind to yourselves
Hi @Hellodolly and welcome to the forum.
I’m so glad you found us as it’s somewhere you can be really honest and a place where we can support you as well as your husband.
It all sounds very overwhelming at the moment and that’s a horrible feeling. It all so much to process.
The support line is great and maybe worth calling before the next appointment. It may help to talk things through and to think about any questions you may have.
In the meantime, as @erica said, it’s really important to be kind to yourself. It’s a challenging time but remember you have your forum family now X
@Hellodolly welcome to the Chronic myelomonocytic leukaemia (CMML) gang.
I was diagnosed One year ago. My blood count on the diagnosis day had ten abnormalities. I was informed of the result in a very off hand way and given a brochure to read. I to instantly thought my god I’ve had it. Then I thought at the age of 73 I’ve had a good run! Then I thought no I’m not going to go without a fight. All I could do was to study changing my diet. I now have just five abnormalities and over a year later my blood count is better than it was at diagnosis. I am on watch and wait, my platelets vary between fifty and eighty and neutrophils vary between normal and 1.4. I have found blood cancer UK to be excellent support. Erica is absolutely brilliant.
Their are many on the forum who have had blood cancer for many years so don’t give up.
Dr. Dan Wiseman of the Christy hospital is a expert on Chronic myelomonocytic leukaemia (CMML) and has posts on U.Tube with very interesting info. I have not been impressed with my local hospital, but luckily my GP has been very good. Wishing you both well
My very best wishes
Unclejack.