Today is one year to the day since I had my first preparatory treatment at Nuffield Hospital with a painful injection, paperwork and briefing of what was ahead. A year ago tomorrow Lisa and I were in the waiting area at Nuffield before having the first intro into my chemotherapy, it was very, very frightening.

As I was in Addenbrookes today for a hearing test, seeing my consultant and then having lung treatment I decided to call in at Nuffield afterwards to see the nurse there that first saw us and looked after us. It was very emotional, not least that I’m actually here 12 months later and still rowing the boat. I saw Kate, the nurse, and we both just had a hug then a bloody good cry; Kate said she so clearly remembered Lisa and I coming in, how beautiful Lisa is and how so very poorly I was, I’d gone all but white/transparent and could only just shuffle along.

I’d forgotten just how close to the edge I had got as I was in it – and I know that Lisa still has the horror within her of thinking at the time that every night we went to bed and I’d be getting up all the time, nose streaming blood and clots, coughing blood out of the back of my throat and she thought I’d never make it through to the morning. Kate thinks Lisa is just great and having recalled all that we had another bloody good cry before I set off home.

I only got about 4 miles up the road before I burst into tears again and had to pull over and just sat there and cried for a few minutes before phoning my dad to say it was the anniversary and say thank you for helping with the treatment at Nuffield. I started to cry again and it sounded like a little sob escaped him as he said it was not to worry, that was what families are for. How true, families and friends to be there to support each other.

Anyway, as for the earlier Addenbrookes visit I was there for a hearing test to get a baseline before I start iron overload treatment – people who’ve seen me say I’m a much better colour now but unfortunately that is from too much iron from all the transfusions and it has to be removed as the consequences aren’t good. My hearing was rated as very good (for age!) and so I have no excuse for selective hearing at home now!

I was also in for regular, ‘prophylactic’, lung treatment which I think stops any fungal, bacterial and viral lung infections and is another horrible thing to go through but is part of the price to be readily paid for the end result. You sit in isolation breathing the pentamadine drug in through a mouthpiece and it tastes of burning rubber and after a while I start coughing and gagging – a right laugh. Can’t wait for four weeks to roll by and have the same again – having said that the nurses and receptionist are great and help make these things more bearable. Real heroes.

The third thing for the day was the most significant – seeing ‘The Big Dog’ as I call him, my Consultant for just over the last 12 months and he is a bloody legend not least as he has survived a year’s worth of ‘Ian-isms’ and at one point he did comment that he would have to revise his terms of English – result!!

The Doc explained that things were all looking positive as my bloods were good; liver function was continuing to improve, I needed to make sure I was still drinking enough water to protect my kidney function and we would look to start the iron overload treatment as soon as possible. Can’t wait for that but it has to be done.

Significantly from today I am coming off my ‘prophylactic’ broadband antibiotic and we will see how that progresses with close monitoring on any possible flare ups. A step up from that is the Doc made a schedule to try and get me off the full dose anti rejection drugs I am still on – reducing the dose incrementally 2 weeks at a time and again having close monitoring for any signs of ‘Graft Host Disease’ flaring up again. This is where the transplant starts to reject you and I’ve had a light dose of it soon after transplant and then a nasty go at it just before Christmas which took me to my lowest ebb. Unfortunately that was on my birthday and I had genuinely given up; the Doc was as he put it ‘seriously worried’ about my mental state and Lisa found me that evening playing songs that I thought I’d like played at my funeral which didn’t feel like it would be too far off. It is times like that that the little voice at the back of my head tells me to take just one more rowing stroke, doesn’t matter how bad it is, how little work I put in or what my tekkers are like – just take another stroke.

Anyway, hopefully we’ll have none of that nonsense this time and things will progress as positively – I have little doubt that there will be some downs to go with the ups but the most important thing is it is forward movement.

The cliff edge is still right there next to me and a stumble can mean disaster, but it is perhaps a little less crumbly along the edge but we have years to go yet, keeping on keeping on!

 

 

 

Category:
Challenges, Ian's Blog

Join the conversation! 10 Comments

  1. Could you please give your updates a ‘mascara warning’ grading type thing so we know how many tissues may be needed. Was ok until thinking about your lovely dad stifling a sob…..I was gone! Well done Ian. These updates are so valuable. Sending huge love to you all xxxx

    Reply
  2. A year ago you wouldn’t have had the energy to write these truly amazing blogs, you are truly amazing too Ian.

    Reply
  3. I’m still blown away by your courage, bravery and determination – both by yourself and Lisa. x

    Reply
  4. Prophylactic… tee hee…

    Reply
  5. You beautiful man x

    Reply
  6. Best of luck with the treatment. I actually saw the video in the link attached literally 5 minutes ago – thought I would share

    https://www.facebook.com/GE/videos/1733283276739959/

    Reply
    • Thank you Terry. Currently I believe that treatment is only available for ALL and not the type of AML I have…..but the longer I stay alive the more the chances of a similar breakthrough….?

      Reply

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