Yasmin finished all of her chemotherapy and her treatment for leukaemia on October 31. But due to a number of ongoing issues it does not feel as though we are at the end yet.
|The last chemo|
Her port is scheduled to come out of her chest on December 10 and we had been hoping for a family escape to the sunshine for Christmas as we have not been able to have a proper holiday away since this began. I was focusing on that as marking a new beginning for us as a ‘normal’ family, without chemotherapy, without Yasmin having a port under her chest, without cancer, without worry.
We had also planned an end of treatment party for December 14.
However, Yasmin's consultant told us two weeks ago that her chest CT scan has revealed tiny flecks. There is no concern that this is cancer but as he is the oncology specialist and isn't sure what it is, Yasmin is now being referred to the chest specialist at Gosh. As Yasmin has had a cough since April which has been diagnosed as a chronic bronchitis, and this persists, there are concerns that the flecks may be a kind of TB that she may have contracted in a swimming pool. We never go swimming due to fears of infection so this can only have happened at our Center Parcs holiday in May.
So at present we are in a kind of limbo waiting to hear what the chest specialist thinks and therefore are expecting the port out operation to be delayed until after Christmas.
In addition, Yasmin has had to have a series of immunoglobulin transfusions. These take all day and her third was this Monday and are extremely unpleasant.
|Celebrating the end of chemo with cake!|
Despite feeling down about not knowing what is going on, we wanted to mark the end of chemotherapy at least with a little party with just the four of us and we had cake, candles, streamers and dancing.
Of course, it is good that treatment is at an end but as Yasmin is still having other treatments there is no sense of relief yet or a feeling of ‘It's over’.
It feels so unfair to Yasmin after saying ‘we're nearly at the end’ for months to get to the end but it still to be going on and her still having to endure awful procedures.
I made Monday's tranfusions 1000 times worse by accidentally knocking the needle out of her chest which meant she had to be reaccessed again with just cold spray and no anaesthetic cream and the screams of pain were horrific and all my fault.
Yasmin took it all in her stride. Withing minutes of screaming she was happily chatting to the nurse about Frozen.
I've been just too thoroughly fed up with it all to post recently. Just a while ago, I felt I couldn't go on until December 10 which has been our end point for two and a half years. And now we have no end point and this is just going on and on…
I don't want to give the wrong impression. We do not sit around in despair all day long.
Apart from her cough, Yasmin is healthy and running around, enjoying school and ballet classes. I am extremely fortunate to have just spent an incredible week in Tokyo for work and we make most of all the time we have together.
|Shortly after her CT scan - my beautiful wonderful super star|
I feel exactly like a counsellor described to me one time - a split existence, a duality of emotion. It is nowhere near as bad as anyone imagines on the surface as you get on with life and laugh and joke. But really you can never put into words the horror of it all and it is far worse than you can ever describe. Both these seemingly opposite feelings occur at the same time.
A friendly woman who started to chat to me in the hospital playroom the other week told me about her son and then casually asked why we were there. As most friends and acquaintance know about Yasmin, I don't often get to see the look of shock, horror and pity she revealed when I explained it was childhood cancer. Seeing your own pain reflected in the eyes of another was not a experience I want to repeat.
It is amazing how your levels of managing disappointment shift when going through something so prolonged and life changing as this. I certainly don't stress about the small and minor frustrations that seem to send other people into despair. Even the devastation we feel at each setback is short lived. Your brain adjusts and you somehow cope with what you have been given. As my wise cousin Jayne once told me, whenever you feel you can't take anymore, you find some more strength from somewhere to get through it. But almost all of this strength comes from Yasmin and Isaac. Yasmin who goes through so much and never ever complains and Isaac our perfect boy.
There may be no sunshine but I have booked Disneyland Paris for New Year's Eve. We are lucky compared to many many families.
At present, we are all here. Really, that is all that ever matters.