Tuesday, March 2, 2010

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...

8 comments:

Debby said...

Revel in your uniqueness?!!! Uh. Nope. In the case of cancer, I'm thinking it's not all that great of news.

Anonymous said...

Hey Chez,
Wish i had some answer for you but i don't my friend, but will keep asking people i know and see if they know anyone with cancer like you.

I do think your right,to many people telling you what to do and making your head spin.Hope someone can at least get the pain to where it can be handle and to get use back in arm and hand.

Chez so glad H is being a real gem.sending gentle hugs.

Love ya...Kaz..xoxo

Anonymous said...

Hi Cheryl,
So happy to see you blogging again today! I am praying for answers to your unique condition....you can't do anything without being a bit different! lol
I will go read again on this type of cancer just to inform myself and if there is anything to tell you from there. Hoping the Docs can come up with something to work for you and you get relief soon.
I think you are doing better than most would be doing at this point and so happy to hear you are not in a state of depression as most are!!! Friends and family love you too much to allow that to happen!
Take good care of yourself, rest when you need it and talk to you soon!
Much love and big hugs from here to there...
Di
xox

Diane Rodgers said...

"♥ * ღ *Just* ღ * ♥ * ღ *Sprinkling* ღ * ♥ * ღ *Your* ღ * ♥ * ღ *Page* ღ* ♥ * ღ *With* ღ * ♥ * ღ *Love* ღ * ♥ * ღ *And* ღ * ♥ * ღ *Hugs* ღ

Daria said...

Thinking of you Chez ... cancer sucks ... it really sucks!

Sean said...

Cheryl...I'm glad you have such supportive friends and family because at the end of the day, that is what's most important. Revel in your uniqueness? Sounds like something an artist would say...

Starry said...

Hi Chez,

sodium valproate, I've had that, for a mood stabiliser (sure they aren't finding a sneaky way to get you where they want you?), they use it for bipolar.

make sure they monitor the blood level of the drug in your system.

don't worry too much about dry mouth, it has to get pretty radical before it destroys the teeth and you will feel it in your eyes first. There are things you can do if you get drug induced sjogrens.

maybe the fact they don't know too much about your condition means you will have more freedom to take the medicines and actions of your choice, you can know a lot more intuitively about your body then they can from a text book.

talk to me any time about any of this
xoxoxox love and healing!

diane said...

Nothing ordinary about yo my lady. You have to have a unique illness. However, cancer, whatever its form is evil. I am proud of how you cope with the problems. By the way I can only type with two fingers, because I'm too dumb to learn how to type properly. I'm glad to hear Hadyn is standing by you and you have the support of your family.