Hi @DottieB and @Duncan it will be a public transport day for me !!
3 Likes
floppy hats on buses, should be fun 
bon chance @Erica
3 Likes
Hi Erica ,
am a bus girl myself but definitely like the idea of teleportation 
3 Likes
Ha I love busesāboth hospitals I attend each month are fortuitously on the bus route that goes right outside my house! Trying to find an excuse to take a ferry to an appointment just to make it even more scenicā¦
Hope your appointment went really well, dear @Erica! Only a few more to go!!! Donāt forget your post-appointment treats 
3 Likes
I donāt know how you are managing to keep track @Erica. Hope you have a well deserved rest after your 3 appointments x
2 Likes
Hi - Iām Alan Berry, 74, retired Electrical Engineer living in the Lake District near Penrith.
Diagnosed with Myelodysplastic syndrome (MDS) just over 2 years ago - completely āout of the blueā , fit and very active up until then, never been hospitalised and had healthy diet/ lifestyle.
Given an IPSS rating of 1.5 Intermediate Level 2 and put on to Azacitidine in July 2022.
Currently just completed 17th cycle of chemo (each cycle being 5 days of injections followed by 5 weeks recovery) at the Northern Centre for Cancer Care at the Cumberland Infirmary in Carlisle. I have blood tests usually every two to three weeks and transfusions if my Hb drops below the trigger level - can usually predict this happening due to acute shortness of breath on minimal exercise.
Have self-injections of Darbepoetin Alfa every Saturday to help with the Hb level.
Had a bit of a heart scare in September 2023 (again completely unexpected) and ended up having a couple of stents fitted to coronary arteries over at the Freeman in Newcastle.
Situation appears to be fairly stable and has just become a way of life, although I still find myself feeling so frustrated that I canāt do even the simplest of things that involve any sort of moderate exertion even after two yearsā¦ā¦
However, I appreciate there are a lot more people in a worse situation than me and am glad to be āstill standingā 
The Haematology, Cancer and Cardiology teams are excellent at Carlisle and I have faith in their handling of my treatment.
I donāt have any specific questions at the moment, just saying hello.
5 Likes
Hello @Alan3624 I am so glad that you have joined our forum, welcome.
You do not have to have specific questions and anyway we are really an anonymous support group and are not medically trained group.
I find this is a space where I can share how it really is for me or help others by sharing my experiences.
I found that the emotional impact of my diagnosis and ever since has been far more than I expected.
Please do keep posting and really look after yourself
Hi @Alan3624 and welcome to the forum.
I hope you find this a place where you can share experiences with others that understand.
It sounds like you have a really good medical team around you which is great!
I think that frustration of not being able to do what you used to is hard isnāt it and takes a while to get used to.
Look forward to hearing more from you 
1 Like
Hi Everyone!
Iām Luke, 36 - a financial risk analyst in the East Midlands.
Currently in a testing/diagnosis holding pattern for Polycythaemia vera (PV).
Sending best to everyone!
4 Likes
Hi @Key.Luke88 I have replied to your first post.
Sending best to you too.
Hey there, new to the forum. Monoclonal gammopathy of unknown significance (MGUS) is what I have, of the IgG lambda variety. Haematologist is promising myeloma within 2 yearsā¦ apparently thereās most of the high risk genetic markers in the results, as well as other stuff which indicates to him Iām very high risk. Found when I was 48, and Iām 51 now. Iām at peace with it. Recently enrolled in uni to get a Grad Dip, just have to take it slower than my usual pace, due to a few functional changes (heart/lung/kidney/liver/neuropathy issues); canāt wait to finish it - will work from home (tethered to supplemental oxygen so being out and about is fiddly when it comes to carrying the tank, using crutches, and carrying a handbag).
Itās all fun and games hehe.
Wishing you all well.
4 Likes
Hi @LetsGoMGUS I have responded to your other post, thanks for filling in your background.
I was 53 yrs old when I was diagnosed and I had just started a years 6 weekend residential course, I was working full time.
Yes, I had to pace myself, prepare for assignments, presentations and the dissertations early and they all took longer to complete and I had had to curtail the social life at weekends, but it was worth it.
You certainly are curtailed with your mobility, it cannot be easy for you and carrying a handbag is a necessity.
Yes, is sure is all fun and games, please do keep posting and be kind and look after yourself
1 Like
Indeed @Erica thereās worthy effort if one can muster it in keeping up with lifeās trajectory.
The oxygen tank is more difficult - I need to carry that on my back - due to crutches, and I resentfully carry the handbag because it is a necessary tool in carrying oxygen connection supplies (in case I go to a medical facility that has supplemental oxygen taps - less and less these days), the heart monitor device, and lots of surface sanitiser spray due to very low immunity (low IgA), and PRN GTN spray.
If I didnāt have all that junk I wouldnāt need one!
I hope youāre doing well, and have a lovely day.
1 Like
It is surprising what we can get in a handbag @LetsGoMGUS.
Obviously with your oxygen tank on your back you need the handbag.
I have just filled up my back pack with āessentialsā I look as if I am going on a trek.
Fun and games and look after and be kind to yourself
Yes @Erica it does seem like MacGyver has packed our handbags on the regular doesnāt it! Everything for every contingency besides duct tape and paper clips
2 Likes
What @LetsGoMGUS you donāt pack the duct tape and paper clips along with the kitchen sink!!
1 Like
Haha! Not quite - usually itās a mini pack of screwdrivers, a multitool, and industrial strength hand wipes.
1 Like
Hi my name is john Armitage Iām from Huddersfield Iām married to Paula and have 2 daughters and 4 grandchildren.i was diagnosed with follicular lymphoma in nov 22 i had 6 chemo cycles and my tumours shrank by 75/80% and my consultant was happy with this outcome unfortunately I felt a lump in my neck in june 24 my lymphoma has returned and spread so now Iām im stage 4 and currently im on the mahogany trial (tablets and chemo) everything is going ok so far and my tumours are shrinking fingers crossed this continues
2 Likes
Hi @Parmy63 welcome and thanks for introducing yourself.
A lot has happened to you in the last couple of years, how have you coped with it all?
Really look after yourself and please do keep posting, I look forward to hearing more about you.
.
Iāve coped with the help of my family and friends, especially my wife
1 Like