Life Goes On

It would seem a glitch in a Windows Update was the reason my computer was in Lillo's workshop for the past week. It was great to have it back so why then did I find myself in tears? The deterioration in motor skills, and build up of fluid in my hand and arm saw my typing skills go out the door. For the first time in my life I have become a one finger typist. This is my reason for not responding to emails or commenting on Posts. It is my intention to find some way of overcoming this, so if you have any ideas I would love to hear your suggestions.


Dr Janine Lombard, my regular Medical Oncologist, is currently on maternity leave. I found myself sitting in front of Dr Tony Bonaventura, making every effort to get some understanding of his personality, which is often more important to me than actual ability. He appeared to be non-communicative, which presented some challenges.

I was told that the recurrence of my cancer in the brachial plexus is most unusual (unfortunately for me.) To me this means that the medical profession appear to know very little about my condition, or how to treat the symptoms. Dr Bonaventura suggested that I undertake hormone treatment, using Femara (Letrozole 2.5mg) for 6 weeks. I will then have another PET Scan and, who knows where to from there! Chemotherapy has been mentioned.

Haydn has made it very clear that he is with me for as long as it takes and my children are very grateful that I am in such capable hands. Who would have thought that it would be my ex-husband acting as my carer? Haydn is very reassuring and reminds me, as necessary, that he will do all he can to facilitate my healing.

Yesterday we visited Dr John Prickett at Hunter Pain Clinic. If I have anything to be grateful for, as far as my medical condition goes, it is that the war in Afghanistan means that more is being learnt about the pain associated with the brachial plexus. Dr Prickett suggested that it is the worst pain to suffer from, and one of the worst pains to treat. There is no drug known that completely eases the pain. He did say that most patients he sees are out of control; he sees no sign of that with me. He also said that patients usually suffer fom depression. When the depression is treated the pain eases. After discussion with Haydn, he said that he did not feel that was relevant. Allelulia! Thanks family and friends. You play a huge part in keeping me sane.

I was given a prescription for Sodium Valproate, an anti-epileptic drug, and also Norspan patches to relieve the pain and replace the large doses of Oxycontin which come with dreadful side effects . One of these is the dry mouth leading to tooth decay. It seems that these teeth of mine, which have cost huge sums of money over the years, may slowly, but surely, disappear.

Before having the prescriptions filled I will discuss the treatment with Palliative Care and my new GP, Dr Milton Sales. It is easy to become confused with too many treating practitioners involved. I have learned the hard way the absolute necessity of having Palliative Care on call.

Once again I was told that my case is quit unique and there is very little known about the condition, or treatment.

Dr Pricketts final words were that I should 'revel in my uniqueness' whatever that means...