Hi from a new member

Hi again KG23 and a warm welcome to this corner of the Community although I am sorry to see you joining us and hear about your myeloma diagnosis and the challenges you have had.

As I said in your post in the New to Community I am Mike and I help out around our various Blood Cancer groups. I don’t have Myeloma but I was diagnosed way back in 1999 with a very rare (also incurable) but treatable type of Non Hodgkin’s Lymphoma (Stage 4 in late 2013) so although my Blood Cancer ‘type’ is rather different I do appreciate the challenges of living with an incurable blood cancer.

I also understand the Stem Cell Transplant (SCT) pathway very well as I have had 2 Allo (donor) SCTs, I am now over 8 years out from my last treatment, in remission and doing great…… SCT is amazing, in my case, up until I had SCT the longest partial-remission I had was about 9 months and this meant I went back in treatment…… this cycle went on for 14-15 years.

SCT can be tough but all do-able….. we do actually have a dedicated Stem Cell Transplant support group where folks from all the blood cancers support each other through the SCT process.

If you have any questions or just want to chat do get back to me……. ((Hugs))

Hi KG23,

I only joined this group yesterday and, unlike yourself, having rising abnormal bloods but no symptoms. They were initially hoping to wait and see but it looks like I’m going to start chemo anytime. This is my third cancer, all unrelated and described as just ‘bad luck’.

I totally get how daunted you must feel, cancer is a lonely space and other peoples reactions difficult to deal with. I had three year old twins when i had my first diagnosis and I’ve begged, prayed and fought to stay around for them. I am struggling to accept Myeloma as, unlike the breast & thyroid I previously had, the narrative around it is so negative. Terminal and non curable is not where I want to be, I am busy, vibrant and still contributing positively to everyone around me. 

I will add, and I’m sure many others will agree, that the brain has an amazing capacity to adjust, take on board and come to terms with the worst of situations. I’m trying to focus on the fact that chemo, sct and all the other horrible things with cancer is just another period of my life.  I will look forward to seeing the other side of this journey and all the lovely things it offers.

Chin up, be brave, you’re not alone. There’s a lot of us starting this morning with a coffee in hand wondering what this day will bring.

take care xx

Thank you Mike for your lovely welcome and encouraging words I really do appreciate it x

Good morning GW2 …… I totally agree that the ‘narrative’ used around these incurable blood cancers, like Myeloma and the Lymphoma I have is not helpful so do try and filter what you read and who you talk with.

24 years ago when I was first diagnosed I was left with a picture of what the future looked like and it looked dark and like yourself would I see my two daughters grow up…… but yes I seen them do university, get married. We now have 4 beautiful granddaughters and over those 24 years I have seen many developments in treatments, so much so the ‘narrative’ is not so dark,

Don’t let your diagnosis and journey totally define you and the way forward.,,,,, you have the ability to define a good part of the way forward especially the battle that goes on between the ears ((hugs))

Hi GW2 really thank you for your reply, I am so sorry that you have had cancer three times. Yes the brain is amazing, until the last couple of days I was coping pretty well, positive, focused etc. I think the added symptoms have just really git me down. I've been sitting in my garden (undercover) since just after 5 am this morning with a cuppa as the pain wouldn't let me sleep and the garden is my peaceful place. Really hope you have a good day x

Hi  KG23,   i am    Kevin ( aka)  Vespa,      also   diagnosed with MM  in June,      66    year birthday,  retirement day, and a call from my  GP    " sit down "  you are now on Fast track for Cancer checks,   We are all  different,  and i have to say  the Treatment  side i can take in my stride,     ( i am on cycle 3 at the moment, )    but the Mental   challenge  is  perhaps the most difficult to manage,  even with a good marriage of  43 years  and  good family,  its is hard to  describe to people the Swing in the emotion,     that you feel  from   despair  to  upbeat,     i dont  do the " why me"       but the Blood cancer   forum and the  Stem cell  forum are a great place for support,      my  Yorkshire dark humour helps me and my close  friend  give me the "   stick friendly bannter" that they always have,   that  helps me,   i go  out  and look  at the trees and  nature  and think,      not bad,   before i may have even  ignored that    around me,       people   say be Strong,   meanfigful,  but  the words i like  are,   "  Hey  Kevin, is there anything i can do for you ?"           i am  lined up for my SCT  IN early 2024,          please  keep posting your thoughts and concern,  there are some good people on here, ( Mike)   who will always respond,  it is   also nice to get  a  another patient    close to what you are going through,          thats me,         here to  give  support when you need it,  as others have also done for me,  the Macmillan   books  are brilliant,  and  easy to  share with loved ones,      your Carer    will  also need some support to come to terms   with what is needed,     Kevin  

I hope you have a good day too. Enjoy your cuppa.

1. Hi, your story sounds exactly like mine e.g. from diagnosis thru to hospital treatment  and after 7 months I have just had my stem cell transplant  5 weeks ago.  I will not lie, it was very hard going but now5 weeks later I am doing great. I have 2 more cycles of chemo and then hopefully I will be in remission. My emotions were and from time to time still are swinging  from yes I am strong I can do this to why me? And can I do it.  But I have an amazing family and brilliant friends  and a fantastic hospital support so please ask for help when you are down . This forum is brilliant  so please post.  Stay strong and  you must be to come thru all you have.  Bless you. Bunky

Hi Mike,

I completely agree that all of us are more than the sum of our illnesses. My way of getting through this, as I have done previously, is to keep as much normality in my life as possible. Keep busy, change your focus to more productive issues. Also, I personally like to be as informed as possible. Therefore I feel better placed to take some ownership on my journey.

I appreciate that not everyone is the same. There are days I feel crushed, isolated, frustrated and wondering how to carry on, it’s natural. Chat rooms, such as these, are fantastic to share experience, journeys and support.

I really admire the way you quickly reached out to me yesterday and KernowGina today with positivity and advice. I’ve read your story, you’ve been through it, amazing strength of character. 

Thank you, I am so pleased you are doing well xx