Hard to know where to begin and hard to recall all that has happened over the last 4 years, and of course is still happening. We were getting fit, we had taken up jogging but Mike wasn't improving. We laughed and I had said he must do more exercise as he was obviously very unfit!

Mike rang me from a field, where he had taken the dog for a walk. He was stuck. He couldn't pick his legs up and he experienced severe central chest pain. I collected him, went to the GP and Mike was sent to hospital, but with no cause revealed at the time.

Over the next while I noticed that Mike looked pale and thought he had cancer. Madly, as he is a worrier about health, I didn't say anything! I was getting frightened too. Mike told me he felt chilled and thought his prostate was a problem. He decided to go for a routine blood check at the local GP’s. The rest is history! We received a phone call to go immediately to A & E. After a distressing and protracted time Mike was transferred to a specialist unit and diagnosed with Aplastic Anaemia.


While waiting for a bed to be treated with hATG Mike was increasingly dependent on blood and platelet transfusions, and we were terrified of infection. We live in a very rural area in Ireland, we became frightened and isolated. Nobody had heard of AA and explaining it to people was tough as we were only learning about it ourselves.

Mike was admitted to hospital on our wedding anniversary, commenced treatment and was the star attraction as he developed full blown serum sickness, total body vasculitis and septicaemia. He was psychologically quite traumatised.

The nurses and doctors were amazing. Fortunately, Mike had an early response to treatment and we went home after 6 weeks. We were terrified as we were so far from the hospital. He returned twice weekly and eventually less often. What we didn't realize was this was as good as it got and we were incredibly cautious about engaging in life.

The relapse and then hope!

It happened after approximately 18 months. The Professor was very hopeful because of Eltrombopag availability. Transfusions again became the norm. Sadly Eltrombopag had no effect. EPO was tried – to no effect. A second round of ATG was being discussed. Then schistocytes appeared and Hb plummeted.

Mike is now 60 years of age.  He was referred to the Bone Marrow Transplant unit at St James’s hospital in Dublin. Mike particularly found this a terrifying prospect. He became very withdrawn and isolated. Luckily, a donor was found and the transplant date was confirmed for September. Then a bit if a miracle occurred over this summer!

Mike's new consultant asked him to get into the best shape he could for the transplant. So Mike joined our local park run (on a beach ) as a volunteer, amazingly lost a stone in weight and reduced his cholesterol. He started to feel better. He went from volunteer to walking the 5k. Mike started gardening. Simple things that take him longer to do than they would a healthy person, but these have had a powerful physical and mental health effect.

Mike's Hb rose to 10 - 10.5!!

We took a holiday in the sun encouraged by our consultant and loved it. 

The now

We met with the consultant last week. The transplant has been postponed as Mike feels the best he has felt in 4 years and the latest bone marrow biopsy showed some cellularity. We were to move to Dublin for 12 weeks for the transplant, it was all so daunting.

Right now we both feel a bit overwhelmed at a bit of a miracle occurring. It is now a close monitoring phase and we are trying to enjoy this moment while knowing the next blood test could turn everything upside down again.

We feel immense gratitude to the medical teams and scientists who try to find treatments for bone marrow disorders. We are in awe of all those wonderful people  who donate blood and platelets, they have kept Mike alive. Also we are so thankful to those people who are willing to donate cells for transplant. To patient support organizations who have helped to educate us and who support research and patient services, you are amazing.

Mike sadly did not get to see his father before he died earlier this year as we were too anxious to travel by plane and Mike was not well enough for a long car and boat journey.

We did get that sun holiday that the consultant insisted on prior to the transplant as that was the type of holiday we missed - walking, swimming and feeling the sun on our bones. We are also now looking forward to visiting the UK in October to meet up with our siblings with a more positive outlook.

I think it has been good for me to write all this down.

We have two adult children who have been with us on this journey. They have been great and have educated themselves in AA. It has been tough as they live a distance from us but they have been really helpful in any way they can and we try to meet up and have a lovely dinner as often as we can. This feels like a break from AA. 

In Ireland we know of only 3 other people with AA. Two of whom are much younger and we have only heard about them - we are not in contact. That is how isolating it is. With cancer, you are on a similar medical pathway to thousands of others and there is huge support, which is so needed. With AA you are very alone and you haven't had surgery or known treatments so you are constantly having to explain and then people still don't understand. That alone is exhausting. Mike really feels that and finds it very hard.

We very much realise that all this can change in an instant and we are very focused on making the most of now, this time is precious.

Blog by Jane, Mike's wife