Afternoon all. Newbie here. I’ve been diagnosed with systemic mastocytosis with associated haematological neoplasm (likely Chronic myelomonocytic leukaemia ('CMML')) in the last 6 months. Information about it/prognosis is very unclear at the moment however I’ve been referred to Dr Radia’s clinic at Guy’s. She is the national specialist in this rare condition so I’m really hoping there’s more information/reassurance or at least a plan once I’ve been there. My local haematologist is giving slightly mixed messages but last time I saw him he seemed less optimistic and described the situation as complex and serious and has spoken more than once about stem cell transplant. So I’m feeling quite emotional and worried about what will happen and what I should be doing while I’m currently on ‘watch and wait’.
Hi @MissChappo and welcome to the forum.
You will find everyone here on the forum very supportive.
I’m sorry to read about your diagnosis. Often blood cancers are rare. My own diagnosis was Myelofibrosis.
It’s good to read that you have been referred to a national specialist in your diagnosis. This should hopefully give you greater clarity and it’s encouraging to hear that your local Haematology Consultant has done this.
Sadly with blood cancers things can change quite rapidly so maybe that’s why it feels like mixed messages.
I went through am Allogenic (Donor) Stem Cell Transplant and there’s others on the forum who have very recently gone through Autologous Stem Cell Transplant including @Spangleystar
Most would say that the transplant itself isn’t the issue. It’s what they have to do chemotherapy wise to get you ready for transplant that’s the challenge. The recovery post discharge is tough too.
What I would say is wait until you have met with the specialists in your condition and see what they suggest as the best next steps.
And if you wanted to speak to one of the Blood Cancer UK Nurses they will be able to offer a medical perspective on your condition.
Here’s a link with details on how to contact them
Finally I would say feeling emotional and worried is not a surprise at all. It’s very challenging dealing with blood cancer.
Hope that helps and take care.
Hi @MissChappo and welcome to the forum.
It can be such an anxious time and I’m sorry that things feel unclear at the moment.
It sounds like your team are on top of things and being referred to a specialist means your getting the best there is.
In the meantime, I would definitely give the helpline a call. Sometimes it’s good to talk things through and to think about the questions you might have ready for your appointment.
There are lots of people on the forum who will understand exactly how you are feeling, especially the uncertainty so I’m glad you have found the forum 
Hello there @MissChappo, welcome to the forum at this difficult time. I’m so sorry to read of your diagnoses, and the unclear information so far.
I’d agree with @DuncanB that many types of blood cancer are rare, and would say that finding this forum is a great way to feel understood. My own diagnosis of Polycythaemia vera ('PV') is meant to be rare too but we have so many lovely folks here living with Myeloproliferative neoplasms ('MPN') like Polycythaemia vera ('PV') and Essential Thrombocythaemia ('ET') that it doesn’t feel lonely.
From my non-medical understanding Chronic myelomonocytic leukaemia ('CMML') is also a type of Myeloproliferative neoplasms ('MPN') like the Polycythaemia vera ('PV') I live with, so welcome to this gang that no one would choose to join!
Something I find reassuring is that being diagnosed with a chronic type of blood cancer like Chronic myelomonocytic leukaemia ('CMML') would suggest it’s a slowly developing type, rather than acute and quickly developing. It’s good to check this stuff with your own specialist as they can explain what your blood test results indicate with your specific diagnosis.
Here’s the Blood Cancer UK information about Chronic myelomonocytic leukaemia ('CMML') for reference, should that be confirmed as your diagnosis: Chronic myelomonocytic leukaemia (CMML) | Blood Cancer UK
Here’s the Blood Cancer UK information about Myelodysplastic syndrome ('MDS')/Myeloproliferative neoplasms ('MPN') overlap syndromes generally, which I believe Chronic myelomonocytic leukaemia ('CMML') is a type of: MDS/MPN overlap syndromes | Blood Cancer UK
This mastocytosis information was also shared via @Ceri_BloodCancerUK and Nurse Heidi on the other thread you posted on: https://ukmasto.org/about-mcd/mastocytosis/#gsc.tab=0
I know there’s a very active thread on the forum with people like dear @ChrissyD who live with Chronic myelomonocytic leukaemia ('CMML') and offer amazing support that you may find helpful: Recent diagnosis CMML
Sounds like you’ve got a great referral to a renowned doctor so I hope that can alleviate some worries. Keeping note of queries and any symptoms or side effects is helpful for passing onto our specialists. If you experience a lot of symptoms then you might find an Myeloproliferative neoplasms ('MPN') symptom tracker helpful to keep note, just let us know and we can share some links.
What could be a more emotional time than after a cancer diagnosis? Please give yourself a break and perhaps expect a lot of feelings to be up in the air, very understandably so. I hope you have loved ones with whom you can share how you’re really feeling. Now is the time to lean on them.
If you’d like to talk this over with the lovely specialist nurses at Blood Cancer UK, like dear @DuncanB and @Nichola75 suggest, just give them a call on 0808 2080 888.
Keep us posted about how you get on please @MissChappo.