I don’t want to be a difficult patient but I think I already am!

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.uk/article-1356405780951/

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…

Ciao!

Light and Love… XXX

Pretty please?

I took the opportunity yesterday to enjoy the weather as much as possible after detoxifying my house. (It was desperate for a proper dust and hoover amongst other things!) So despite my list of things to do growing I decided to have lunch and then read my new book in the sunshine with the cat on my lap.

The book is about energy experiments that prove your thoughts are your reality. I decided that I would try it out and see what happened. I have been waiting (patiently) for ‘people’ to contact me.

I often wonder why‘people’ say they will do something within a time frame and then don’t do it. I then think is it me that’s being a pain in the arse for getting arsey with them for not sticking by their words?

Well with this new experiment underway I decided to believe that the universe would give me what I wanted and that I would hear from these ‘people’ within 24 hours.

Low and behold I did. I didn’t necessarily get the result I was hoping for but I did at least hear from them. The experiment worked.

First thing this morning I received a short mail from Prof Stebbing basically saying that he thought it was hard to tell if I can have a biopsy for the genetic test and that I should discuss with my oncologist Prof Harris. I was totally confused. If I wanted to discuss this with Harris surely I would have done that? I couldn’t understand why I couldn’t have it done unless they say it is physically not possible, especially after being told that I could potentially.

He replied asking my mobile number. I gave it to him. He called. He was very obscure and almost intimidating in the way he spoke but I have gotten used to thinking that is just the way he is. As with all intelligent men in this field we are supposed to simply trust them without question. The problem with e is that I have bloody millions of questions! He said that in his professional opinion that I should be looking at having a platinum agent rather than genetic testing. I said I thought that having the biopsy now was the right order to things. I could at least then have the genetic test at a later date all whilst I am having chemo or some other treatment. He said he feels I have paid too much money for treatment and doesn’t want me to do that anymore. He said a biopsy could cost me in the region of £50,000 if it goes wrong. How could it go wrong? I asked. He said that it could have a bleed or infection etc. Plus he said that paying in the region of £7000 for a genetic test is simply too much. Ok so why did they suggest it then? The mind boggles.

He said that I need treatment options right now and not diagnostic options. Ok hear ya..and I’m not against having a platinum agent such as gem/carbo regime (not that I am loving the idea of having my body flooded with chemicals) he said he wasn’t fobbing me off and that if his wife had  to choose , this would be it. OK I really hear ya. I am sure he said, ‘Ok darling, bye’ at the end. Ha ha!

So that was a weird start to the day. I always feel rejected when I am told that I cannot have something even if I didn’t really want it! It also makes me wonder are they telling me they don’t want to spend money because I don’t have private healthcare and unlimited funds.

 

I then get a call from the radiology department asking me to pay £243 for the cost of a radiologist to look at my scan to see if I can actually have a biopsy. Uh? I thought Stebbing had just said that I shouldn’t do that? I guess that they hadn’t communicated. Part of me wanted to pay the money and find out if I can at least have the biopsy. I haven’t rung them back to let them know. Still pondering.

I then called Dalgliesh’s PA. I decided this was easier than emailing. She immediately said that she had asked him to call the radiologist to tell me if I can have ablation. No such joy as yet. I then mentioned if they had heard back as to whether I can have the vaccination trial? She said she didn’t anything about it and that I have to wait till I get a reply about the ablation. For goodness sake… seriously. Its two weeks since I saw him. For people that work in oncology where time is clearly important how bloody hard is it?

I have to say how thankful I am for the NHS at this point. At least when it comes to treatments that they approve you can get them very quickly. Anything outside the normal route and guidelines however takes so much longer. I am waiting, seven weeks on to hear from the radiology department at the Churchill as to whether ablation is possible there. That said I am feeling a lot of love towards Prof Harris. He is the man right now that at least replies when I ask him something. It may not be want to hear but at least I get a reply. His PA, Emma, is a diamond too. She has emailed regularly for some time now and she is a god send.

I reckon the Universe has a plan. I don’t know if I was meant to wait all this time for my next round of cancer smashing treatment (even if it is chemo) but maybe that’s what was mean to be. Instead I have been on GcMAF. I had a batch arrive today for me to take for the next few weeks. Fingers and everything crossed it is at least doing something positive in three…. Please, please, please, pretty pleasejQuery15202801579472960667_1396455100883?

You never know how the day will pan out and what kind of news you get. I do like that about life but all these twists and turns play with the heart and the head.

I will keep digging for a reply from Dalgliesh- surely by the end of the week there will be some confirmation?