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Hi ,I had an auto SCT in August of last year. Had a setback at xmas and was hospitalized with the flue. I made a full recovery and started back at work 3 days per week 2 months ago. My biggest 2 issues are I'm still getting extremely tired and end up in bed by 8 on work days and struggle to get up on days off.

Also I cant seem to get the idea of if or when I might relapse. Any advice would would be greatly appreciated. 

Thanks John 

  • Hi again  living with an incurable blood cancer is such a challenge. It was 24 years last Wednesday when I was diagnosed with my type of incurable blood cancer, now 7.5 years out from my second Allo SCT and yes I remain incurable but I do find the longer I remain in remission I gain some confidence that this could actually be a long remission 

    I like the picture of the post treatment journey is like driving a car........ the future is open for you to see through the big wide front windscreen...... the past is only visible in the little mirrors........ if we concentrate on the little mirrors we miss the future and more importantly crash.

    If you have not sat down with someone and actually talked this through I would recommend you look into this…… it helped me a lot.

    As for fatigue I will say that you are ‘only’ 9 months out from the most challenging journey your body has been through, combining this with the post SCT left over illnesses can prolong over recovery.

    I have to say my recovery took a good 2 years and that was with me being retired ((hugs)) 

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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  • Thanks Mike,the car journey makes a lot of sense but I find it hard to get that Cancer thought far from my mind. I also lost my youngest brother to cancer last year after only 4 months of diagnosis. It really was the worst year ever.. I do speak to my therapist about this and she says it's still early days after everything that's happened. 

    The fatigue is so frustrating and my boss really doesn't understand stand it . They seem to think because you look ok it must be fine..

  • Sorry to hear about your younger brother.

    Your therapist is spot on and unfortunately you have to ride the waves in this....... things will improve.

    Back in late 2013 I was put in the position that if my SCTs had not worked I would not be speaking to you today as I was only given a few years on the clock....... so this stark experience helped me focus my mind on enjoying every moment of every day and not letting the 'what if's?' define me...... 

    You may have seen me post that my SCT Consultant told me that going through treatments like these is like doing a boxing match and a marathon every day over all the months of treatments and this was all done without any training.

    Think doing the London Marathon without any training and you had to finish it as your life depended on it……. this is the journey your body and minds has been on....... when people fail to 'get it'...... I tell them to imagine having to do this and tell me how they would feel and react.

    I have also sent or given a printed copy of this great paper After Treatment Finishes - Then What? by Dr Peter Harvey as it highlights the post treatment milestones...... and asked people to come back with their thought of being put into my shoes.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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  • Hi Mike,I've just read the article after treatment finishes and its exactly how I am.

    So I'm not going mad after all Grin.

    Thankyou again and best wishes to you.

  • Well that good news Stuck out tongue winking eye

    It is actually a very good tool and I have lost count of the people who have given a copy to their employers/HR department as it explains a lot about the challenges we have to navigate post treatment.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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