Hi @Conrossmac a great big welcome to our forum and I am so glad that you have found us so quickly.
A great big happy birthday to you for yesterday.
You have entered a world that speaks medical speak, 20 yrs on and I still have not learnt it.
I was diagnosed with another blood cancer 20 yrs ago at the age of 53yrs.
I picked up on you saying will I see my daughter be an adult.
I remember asking myself whether I would see my son get married and have children, well he was actually 51yrs old yesterday (the 20th) and he still hasnât married and as far as I know got any children.
I can only share my experiences, but I am a great walker and a Pilates girl. I am fitter now than I have ever been and my 70th birthday was my best ever.
Obviously a newborn daughter will take up a lot of your time.
What I have realised is that we are all unique people with different medical histories so there is no one size fits all.
Perhaps just build up your exercise, in my book slow and steady wins the race.
The Blood Cancer UK support line is also there for you on 0808 2080 888.
I would say personally just give yourself plenty of time to come to terms with your diagnosis, you have a lot going on, be ever so kind to yourself and please do keep posting.
Hello @Conrossmac - glad you have found the forum here - itâs not easy when you get a diagnosis is it and takes a bit of time to adjust so just the time to touch base with others and get some support. I have Essential thrombocythemia (ET) too diagnosed 18 years ago in my mid 40s. I would definitely recommend the charity Myeloproliferative neoplasms (MPN) Voice their website is very helpful and there are lots of online videos and in person events that teach a lot about the condition both from those living with the disease and professionals such as the excellent Prof Claire Harrison, you will also find many younger Myeloproliferative neoplasms (MPN) patients there like you parents and the concerns that go with that situation
Hopefully your consultant is someone experienced in MPNs itâs worth checking and also you have had contact of a clinical nurse specialist in the team to help with everyday concerns going forward and can be specific to your own medical situation. Iâve always found my body lets me know what I can manage and whatâs not so good for me - and finding a perimeter of whatâs manageable is good and knowing at times if you need to rest up a bit before a bigger event or just knowing sometimes bigger events will wipe you out a bit after but still well worth doing and just expect abit of recoup after - itâs a learning process and you will get there- it is also individual to each person thereâs no standard of how anyone is effected and itâs good to tackle however you are just now and learn the process of adapting along the years and enjoy life from what can be done.
Do know many Myeloproliferative neoplasms (MPN) patients have been living with the disease many years and often many years of treatment too which is encouraging when getting a diagnosis at a younger age
Keep us posted how you get along
Hi,
Diagnosed with AITL 2.5 months ago, and have now had 4 chemo CHOP-R.
62 yr female.
Struggling with blood levels- having frequent platelets and blood top ups.
Liz
Hi @stunned I have just responded to your other post.
I would say, I am not a medical person, that you write down all your fears, questions and practicalities for your medical team, no question is off limits and ask for replies in plain English. I have never learnt medical speak.
Really look after yourself and please do keep posting
Hi everyone
I have been in and out of this website for a few years, well, since my husband, who was 59 years when diagnosed with Primary Myelofibrosis on this day in 2018. In 2021, he had a bone marrow transplant, and this year, we were told it had failed. He had a 100% match with his younger brother. Nothing is guaranteed, and we have chosen quality time over quantity. A second transplant is not on the cards, nor is a top-up from his brother. As Primary Myelofibrosis and a failed transplant are not common, it is hard to know how the next stage will play out. Even his specialist doesnât know.
We are from New Zealand, and my husband had cancer a few years before he was diagnosed by a locum Doctor, not his regular. I am finding how people are dealing with PM interesting.
Hi @KiwiSuz I am so glad that you have had the courage to post on our UK forum.
Today and this time of the year must bring up so many thoughts and emotions for you all.
I hope others will share their experiences for you.
I might be wrong, but it seems as if you have some questions that you would like answers to so perhaps you and your husband, if he will let you, might sit down together and write down your fears, questions and practicalities for his next appointment.
You say that you have gone for quality time over quantity but you also want to know about all the options, there might even be clinical trials to consider.
Please do let us know how you get on and really look after yourselves
Hi @KiwiSuz and a big welcome to the forum.
It must be difficult not knowing what the next steps may be and what the options are.
I hope others will be able to share their experiences with you and you find value of the forum.
How are you doing?
Hi Erica, we have talked about everything repeatedly and decided not to do clinical trials. I think there is a time to say no more treatment when they didnât work, and a second transplant isnât an option. Anyway, Iâm not sure why I decided to come on here, as it wouldâve been more valuable years ago. However, now it is more from a carerâs perspective and to read how others are dealing with a terminal cancer partner. I must emphasise that the medical team my husband has been under has been and continues to be excellent, approachable and supportive. There are no complaints in that department.
Thanks, Nichola. How am I doing? Good question, most days ok and others I have had enough of dealing with medical âstuffâ. I keep myself fit and have support if needed though I am not so good at asking for it. Anyway, I am strong and will be okay when it is necessary to dig deep.
I will from now on be more of an observer on the forum.
Oh @KiwiSuz please do use our forum in whatever way works for you.
I hope others will be able to share their experiences
Yes, I agree I am useless at asking for help too.
It sounds as if you and your husband are very close and have really talked his treatment or not through.
Doesnât it make a difference to have such a good medical treatment team too.
I would love to know more about you, and your husband is very lucky to have you, but do whatever feels right for you.
Be very kind to yourselves xx