Thursday, 6 January 2011

The way ahead

I was awake for a long time on Tuesday night and Raymond was unable to sleep much either.  In order to keep going he has always seized upon the encouraging remarks made by the doctors because it is something to cling onto.  It’s not that he has his head in the sand but he doesn’t want to be morbid and upset me.

We travelled to the hospital along the shore and could see two Cunard liners in port.  Later as we drove past the docks we noted that four other cruise liners had come in on the morning tide.  I can hear their hooters as I write this.  All are sailing on the evening tide and it will be quite a sight for anyone standing on the shore.  The vessels are travelling to different parts of the globe taking with them thousands of happy passengers on board.

At the moment Ray and I are neither happy nor hopeful.  I had my blood taken and a chest x-ray at the hospital.  Both were on screen by the time I saw Dr M.  He had discussed my case with the head of radiography and both agreed that further treatment was not really wise.  On examination Dr M could see that new swellings had appeared.

As ever he is very organised, has contacted BUPA to put forward proposed courses of treatment for their approval, has organised my bone marrow aspiration for Monday at Southampton General and will arrange for a CT scan at the Nuffield.  We discussed the various chemo regimens still available to me.  As I have had so much treatment in the past two years, whatever is chosen will not be a full strength version, particularly as my platelets are low.  It has been decided that I shall undergo weekly chemotherapy.  The first session has to be at the General in case of a bad reaction but subsequent blood tests and chemo sessions can be carried out at home.  I was pleased that BUPA actually suggested that even before we requested it and that their reason for it is that patients prefer it, not the usual ‘because it’s cheaper’ which is the common mantra these days.

Dr M says that all these arrangements are subject to his discussion with Dr P at the Marsden.  There is a lot of mutual respect but they need to be in touch to be certain which drugs I will be taking and proposed lines of treatment.  However, discussion notwithstanding, it looks as if next week will be busy with medical appointments.  Obviously I am not happy about losing my hair again, it having only just grown in but far more important and ominous is the knowledge that any of these forms of chemotherapy has a 30% chance of success at most.

Once again we are gambling but in the back of my mind I know that previous treatments have never been completely successful for me.  Remnants of the mantle cell lymphoma always remain.

Outside all the hooters and sirens of ships in the port are sounding out and fireworks are being lit.  It is a time of celebration for so many individuals and good to see the port busy with liners once again.  Life goes on.


  1. Hi Alison

    I'm a fellow MCL person, though in remission at the moment. I don't know if you're on the ACOR MantleCell list (, but there are a lot of very knowledgeable people on that list. They are a great resource about the many new treatments that are available for MCL. One that they are all talking about at the moment is currently in trials in the US (but maybe elsewhere as well) - CAL101. It is producing very good results.

    I just wanted to say don't give up hope too much yet!

    best wishes

  2. Thank you so much for your advice. I shall be following it up and best wishes for your remission.