So another week passes and I am still uninformed as to whether I can have ablation privately or if the vacination trial is appropriate for me.
I emailed Prof Harris, my NHS oncologist yesterday who thankfully replied to my questions before going on annual leave for a fortnight. The radiologist there has decided I am not suitable for ablation there because I have nodal involvement. Oh… How annoying. I asked for ablation a while back when I didn’t have nodal involvement and was told no then too. Go figure!
Hurry up Dalgliesh please let me know if ablation is possible! The waiting is awful and I don’t mean to be rude but the bill for their consultation comes quickly yet their promises that they will let me know within a week doesn’t
I did find out from Harris that there is a sample of my tumour available should I wish to proceed with the genetic testing. Well at least that’s something. I think I will put that on the back burner for a short while.
I also asked Harris some questions on having the gem/carbo regime. Things like will I lose my hair? Will I need a PICC line? And more. He replied that both regimes, i.e.; Gem/Carbo and Eribulin are both good options but seeing as we have funding for Eribulin right now that we should go with that. Oh… again.
I know it’s minor in the scheme of things, and even though Prof Stebbing has strongly suggested platinum regimes over Eribulin, I kind of think that if my hair is going to fall out due to side effects on one chemo but not on the other then surely opt for the one that doesn’t cause hair loss right now, then when that stops working go for the one that does cause hair loss. There is some logic to my thoughts! But now I feel that I will be whining and asking too much by enforcing what I want to do. I don’t want to be a trouble maker, a difficult patient or anything… However I feel I already am. But it makes me think of the NHS saying, ‘No decision about you, without you’. Now I know I agreed to Eribulin in February. But now I have changed my mind. Yes, I am being vain, and maybe a little influenced by what Stebbing has told me, but can’t I decide what I want? I hate confrontation and I wonder why does everything have to be so hard. I can totally understand why canSer patients give in and just say, F*** it!
That aside the last few days have been rammed with business and I am not sleeping as well as usual. I am eating emotionally and filling my face, albeit with healthy stuff, but continuously. I don’t like the unknown and all I need right now is to know either way what is going to happen. P.S. I hate being ignored.
I have used my time wisely though in between my clients. I have had the pleasure of speaking with a New Zealand born man who is now living with his family in Germany. His wife has canSer and they want the best treatment. He has been giving me info on tests and treatments his wife has been having.
Also I had a reply from a lovely lady who lives in the USA. She is a triple negative survivor for real. She was told she had a limited life expectancy and went to Germany for treatment under the care of Dr Ursula Jacobs. The list of treatments was lengthy and even hard for her to explain in detail but low and behold she is home and five years later in remission. She regularly has testing on her oncogenes to see how active the canSer still is in her blood. Apparently it is currently very low and she is feeling great. Unfortunately Dr Jacobs no longer works with canSer patients but she has emailed me to tell me another doctor who could help possibly.
She did tell me though that Prof Vogl, whom I had booked with to go and see this week, would be a really good option. She said that she has stories of people that went there and had many, many tumours which cleared and they are in remission. It does give me hope. Pete and I had already decided that if this treatment with Dalgliesh doesn’t come about then we are definitely going to see him.
I am finding it hard to sleep at night, I think mainly because I am eating and drinking too late, my mind is buzzing. So I have been using that time to focus on the GcMAF working. This could be a really good time for things to be happening and my order of GcMAF arrived yesterday so I had my next round of shots. I certainly don’t feel ill.
I have been asked with the air pollution issue that we are experiencing currently in the UK, if I am feeling anything on my lungs? Nope. I feel as well as usual.
I have been reading the importance of exercise and the effect it has on the glucose in the body and of course we know how glucose affects canSer. This is why so many very fit and active people last much longer when living with canSer. I don’t think I do enough. Some days I only do twenty to thirty minutes. I know I should do more.
Well tomorrow I will be… my friends are going to be climbing the three peaks for charity soon and needed some training. Pete kindly offered for us to go with them to the Brecon Beacons and walk up Pen y Fan. Check this out; http://www.nationaltrust.org.
Should be fine, yet I hate heights and am not really that fit! Oh well it gets me out and about and I am sure it will be fun…four girls and a Bear. Sounds like a really good children’s book! Illustrations pop into my mind!
Next week I have a lot planned. Of course if something to do with having treatment pops up then everything gets put on the back burner but for me at the moment I figured I would have more ‘me’ time. I am having healing/reiki, pranic healing, a yoga class (yes finally!) and acupuncture. Amongst that I hope I find some conclusion on this ablation debacle.
I hope that everyone else has a great weekend full of fun and laughter.
Here’s a Friday Funnie for you…
Look out for pictures on Facebook of our eventful day tomorrow…
Light and Love… XXX