leukaemia-limbo-dance

§ The Limbo Dance: signifying an emergence from death to life. §

Pills

After the horrible scare in November 2015, the doctors chose a new drug to control John’s leukaemia. The drug was Idelalisib and, if he could tolerate any side effects, they thought he may be well for three years. The only trouble was, they didn’t have three years’ worth of data to know for sure.

It started well…..

Initially, things went well and there seemed to be no real side effects of the drug. John got sufficiently stronger to engage with life in general – even doing one or two jobs to keep his hand in to support the running of the business he’d founded over ten years ago. We were very hopeful, and happy with the John’s progress and, despite fatigue, we were able to thoroughly enjoy Christmas.

But we’re reviewing the situation….

We had a long list of the side effects of the drug and were just congratulating ourselves on John’s progress when, after three months of taking Idelalisib, he started with griping tummy pains and the occasional diarrhoea. The doctors monitored what was happening for a few weeks, and then decided that probably a rest from the drug, followed by a resumption of it at a lower dose, might do the trick.

Beam me up, Scottie!!

We were both tired after what had seemed a long time without a break, so we proposed to take a week away in the sun. The doctors approved the proposal, suspending the drug for three weeks, with a view to picking it up again after our holiday.

We had a good, restful time on our week away, but John was incredibly tired. Walking anywhere was a challenge, so our lazy days consisted of sleeping in, wandering down to the restaurant/bar to eat/drink and sunbathing by the pool. I punctuated the lazy days by doing the running about if we needed anything – a drink (free beer on tap), a newspaper, the forgotten sun-hat and, to John’s wry amusement, persistent reminders that he keep his hands off everything since there seemed to be people sneezing and coughing everywhere. Infection can be a killer.

More Pills

Once we were back home, the consultant, Paneesha, reduced the dose of the tablets to see if John could tolerate them a bit better. For a while, it worked. But then came the tummy gripes and diarrhoea again. Hmmm, what to do?

Change of plan

Earlier in the year, Paneesha had discussed with us the possibility of a stem cell transplant – formerly known as a bone marrow transplant. At the time, it felt like pills were the better way to go, so John didn’t opt for it. Paneesha said he’d keep the options open and start looking for a donor anyway…………..

And now………

So here we are. Pills are not working well enough, and discussions focus on the quality of life and the likelihood of more of the same – fatigue, diarrhoea, tummy pains, plus whatever else was on the list, if we stick with the pills. John is offered the transplant, and in June 2016 we accept.

The Updates begin

The Blog idea came from a friend who thought my emails following John’s progress were a good read – so stick with it, folks, and enjoy the Leukaemia Limbo Dance we’re experiencing – sometimes it’s fun and amusing, other times it’s frustrating and angry-making, but it’s life!!!

 

How it all started

Ten years ago, my husband, John, was diagnosed with CLL (Chronic Lymphocytic Leukaemia). We didn’t log the journey of his illness when it first started. With hope and faith in our hearts we just got on with our lives, interspersed with hospital visits, treatment and periods of remission.

A bit of a crisis – 2015

Last November, however, things came to a head and John was seriously ill. He had started on a drug trial which the doctors thought would be just right for him. Unfortunately this didn’t prove to be the case, and his body started to object by refusing to make any red cells, leading to severe anaemia. So much so, that he ended up in hospital being transfused with blood every day. And the cancer was having a field day – with his bone marrow over 90% infiltrated with cancer cells.

Clearly it was a very anxious time for everyone, including John. He eagerly awaited the daily blood transfusions, knowing that they were keeping him alive. He got weaker and weaker, being bed-bound. Despite trying to stay cheerful and celebrating his 65th birthday in hospital among the family with a cake and candles, he started thinking about putting his affairs in order.

At that time, I was refusing to accept that things might be that dire, and did loads of research on the internet about the options available. But I needn’t have worried, the doctors were putting their heads together and had come up with a  plan. Instead of trying to stem the tide of ever-increasing anaemia, they put him back on chemotherapy to address the ever-increasing leukaemia.

It worked. He came back from the brink and back to the land of the living. Much to his, and everyone’s relief. He, nor I, believe his work is yet done on this earth. There is more to come – we just don’t know what yet.

And the blog…..

And I have started this blog to chart the journey. John tells me he is dancing with cancer. But what sort of dance is it? A tango? A jitterbug?

No – I think it’s a Limbo Dance. Why? Because traditionally, the Limbo Dance started with the bar at the lowest possible height before being gradually gradually raised, to signify an emergence from death into life.