Just dropping in and saying Hi!

Hello Paul, sounds like you have a great life. Onwards and upwards. I haven't posted for a long while, just getting on with life and fundraising for Macmillan and my favourite dog charities. I still look back and try to be grateful for everyday.

Hi all….. I had my 10th re-birthday on Tuesday after my second Allo SCT in 2015…… my youngest granddaughter proudly said…… “you are only one year older than me grandad”……. and my oldest daughter said that she is 34 years older than me…… the fun and joys of life post Allo Stem Cell Transplant…….. and au had 10 candles on my cake 

Hi, it's mixed emotions when diagnosis anniversaries come round. I look at social media memories to remind me how far I have come and to be honest couldn't have made it so calmly without you and Paul and Moomy reminding me I didn't have to get rid of my dogs (I was in France at the time and they were very strict on infections).  Best wishes

As the years have went on….. our celebrations (on the insistence of my 4 granddaughters) have got more and more extreme ;)

Another celebration next month as it’s my 70th birthday 

Hello all

I fully agree with your memories of your journeys, the dark days were awful but the good times now are great.

My wife is now 4 years post allo sct and 7 years post diagnosis. She is doing fantastic, we've had some lovely holidays together over the last couple of years and also a new Grandson and grandaughter. My wife has been extremely fortunate not to have had any serious GVHD but she has suffered with degeneration of her gums which has led to potentially having to replace a few teeth in the coming months/year.

Albeit a small price to pay in the whole scheme of things to keep the making of memories.

That’s good to hear from you all.

Daughter is now 21 years post diagnosis and 14 post allo. She had a scare early in the year but the node has reduced in size so excision biopsy has been put on hold. 

I’ve barely seen her since she returned from a month touring with Elbow (USA) and went up to Manchester within a couple of hours of her return to teach and direct this week at her old conservatoire. Next week she’s got Abbey Road studios in her diary so I suspect I won’t see a lot of her till after that!

Today marks 4 years since hubs died from kidney cancer, so a bit of a poignant day for us all. They were both here and so very helpful, but have messaged this morning and son will be here later.

hugs xxx

Hi Everyone 

My journey since transplant in 2019 has been rather a roller coaster. By Covid 2020 life got pretty much back to normal,I was back running regularly, hardly any gvhd. From 2020 until September 2022 I can safely say our life was idyllic, especially after what I had gone through. Sadly my darling Alison was diagnosed with bowel cancer later that month, ( no warning or signs apart from feeling unwell for a couple of weeks previously ) She passed away after 5 months,March 2023.

October 2023 my neutrophil count started to drop to around 0.9, they monitored me for a while but a bone marrow biopsy last November 2024 showed I had relapsed with MDs. And chimerism 37% Still actually in remission for AML. No other symptoms apart from low counts. My donor in the USA was contacted and I have had three donor lymphocyte infusions. Chimerism still not moving but I now have gvhd of the liver , so I am on high dose steroids and a host of other drugs. Steroids are working and latest biopsy shows MDs cancer cells have dropped from positive to negative. They think the graft verses leukaemia effect is working . Still feeling absolutely fine apart from sleep due to the steroids and still running. Dealing with this without Alison is difficult but trying not to give up. The MDs is therapy related due to the chemo but without the chemo I wouldn’t be here writing this. 
Despite everything I am still so grateful for the extra years I had with my darling Alison and my wonderful sons x

aw how lovely, getting to 70, as I did earlier in the year, is a great milestone even with going through all the treatment that we have

OMG life is just unfair :-( 

A little update , a phone call yesterday with results of latest biopsy to say my chimerism which has been stubbornly around 30% has now reached 100% again and no evidence of disease !! My ears are still ringing I can’t believe it. The liver is now at normal levels again after gvhd so I am slowly tapering the steroids. Lots more monitoring to do but once again the doctors ,nurses,scientists and my amazing donor have worked their magic . What a roller coaster life can be !