This anniversary post is to recognise that I’m still here, in remission, seven years on from the day (4 February 2011) when I was first diagnosed.
In that time I have seen a number of friends die, from myeloma, leukaemia, amyloidosis, inflammatory breast cancer and related conditions or infections. And I’m still here, in remission.
I’ve met my stem cell donor, who’s a lovely and humble young woman, who says happily that she’d do it again in a heartbeat. That’s how easy it is! So if anyone reading this has any thoughts of signing up to a stem cel register, she and I would both like to encourage you to go ahead.
Anthony Nolan will register people aged 16-30, while DKMS will take people up to the age of 55. In both cases, you simply fill in a form and swab the inside of your cheek. It’s that simple! I know this because I volunteer giving talks in schools and colleges about it and signing up young people at recruitment events.
You stay on the register until you’re 60 and you could be a match at any time, or never get called. Those who do, in my experience, are delighted to be able to donate. I know this because I volunteer to visit donors on the day they donate at Sheffield Royal Hallamshire Hospital.
As a recipient, I can vouch for what a huge impact that little act can make to someone who might otherwise die. I’m still here and in remission.
And finally, some statistics that show the longer you survive, the longer you’re likely to survive. See charts below.
So while I don’t have a five year plan (I never did!), I can think about next year without being too anxious that I won’t be here. I could relapse, of course, but these days I feel generally calmer and more confident about being around to celebrate eight years post-diagnosis; to be able to say again that I’m still here and in remission.
This chart shows that the average life expectancy for someone in my situation has risen by three more years from this time last year. I’m potentially looking at a further 14 years. When I was first diagnosed, the outlook was pretty grim, around 3-5 years. So I’m already winning!
And this shows that the percentage of deaths at seven years post-diagnosis has dropped 1% from last year.
I’ve not done anything in particular to celebrate today, but I’ve been thinking about my experience; remembering those who’ve died; thanking those who supported me, emotionally, practically, medically and financially; posting this; and appreciating that I really am still here and in remission.
Fantastic news Jet, looking forward to next years post. Love from Colin x
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Thank you Colin. Deborah was, of course, in my thoughts today. I hope you’re well and enjoying life. Jet x
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Wow Jet! This is freakin’ awesome. Here’s to at least another 7!
Love you & think of you often.
Xoxo 😘
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Love you too, my dear (old? 😝) friend. 💜 x
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How lovely to hear from you Jet and to be able to celebrate your seven years of survival. I am also now in my eighth year of survival. Like you I am very conscious of the friends I have lost on the way.
Although my mobility is very restricted I am very grateful to still be alive. Like you I am quietly confident about having a future even though my paraprotein is slowly rising again.
Happy anniversary and here’s to many more.
Love Mavis xxx
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It’s wonderful to see that photo again, and thank you for reminding me how long you have been on the upward scale. Time passes and the diagrams are so inspiring and I can’t believe so many years have passed since your diagnosis Onwards and Upwards
Lots of love Helen
I am away at the moment and it was wonderful to open my computer (5 hours behind you) to receive your email
>
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Thank you. Lots of love to you too. x
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So pleased that you are doing well ,miss your regular posts.
Barbara and Colin
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Thanks Colin. Love to both of you. x
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So happy for you. I’m just starting my 6th year in remission. I hope you carry on to see more years Myeloma free.
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It was lovely to see you posting and read your positive thoughts as I approach the 8th anniversary of my own diagnosis, Jet!
Onwards and upwards!
Elizabeth in Bournemouth
XXX
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Thank you Elizabeth.
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Hi, Jet! Yours is an inspiring story. I am very happy for you. It’s incredible! My sister has Stage 3 MM and is currently being treated following a relapse. These graphs that you show in your blog: are they specific for MM or are they for cancer in general?
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Hi Gala. Yes, they’re for myeloma. There really isn’t such a thing as ‘cancer in general’ There are a lot of different cancers, even a lot of different blood cancers.
Please remember that while the graphs are heartening, they are only statistics, i.e. looking at overall numbers; they don’t say much about any one person’s chances of survival or longevity. Myeloma is still considered incurable.
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Hi Jet,
I am now in my 7th year of remission.
Not heard from you for ages. How are you and are you still in remission?
Love and prayers
Tina
Xx
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Hi Tina
Thanks for checking in. Yes, I am still in remission; good to hear that you are too. I have just passed my 6½ year anniversary of the stem cell transplant. I am mostly well, continually adapting to the after-effects of fatigue, chemo brain and some left-over GvHD, following treatment.
Best wishes
Jet
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Hi Jet
It’s a year since I last emailed you. I have just passed my 7 year anniversary of my SCT. Still in remission thanks to the Myeloma X1 trial. Still get fatigued by the afternoon and have to have a nap.
How are you getting on? Are you still in remission? I hope you are.
Love
Tina. X
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Hi Tina
Thanks for your message. I’m really pleased that you’re still in remission after your auto. That’s a really good outcome. Long may it continue!
I’m still in remission after my allo transplant, now 7½ years. Like you, I live with fatigue and need to take it easy and rest at times, but I’ve adjusted to a slightly slower/quieter life.
Best wishes
Jet
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