Drugs are being removed from funding, Gulp……

Well it’s the middle of January already… time feels like it has dragged but also flown by which I guess is a good start to 2015. I have been settling in to my home life again since we got back from holiday only last week! It feels like weeks ago. So much has happened.

We spent much of our time away arguing with BA to get extra leg room seats for me because of the risk of thrombosis. In true annoying airline style they reluctantly gave me a seat but said that either side of me had to be saved for mothers and babies. Fine… But the insult came when a normal family with a teenage son say next to me. They then asked a random fella if he wanted to change ?! I nearly blew a gasket. Luckily for me the guy was so nice and offered to change seats with Pete who was sat about 5 rows behind and was hugely embarrassed by now. Look its principles to me. Why did BA lie to me and why do they make it so hard for people to buy, book or whatever their seats. A complaint is inbound.

Anyway flight home was OK all bar not sleeping but once we got home we slept and got unpacked. I would like to say I got back into the swing of things really quickly but all good intentions are just that at the moment.
Davina’s new DVD is waiting for me to start. We have had quite an exciting time since w got back. Pete of course has gone straight back to work but squeezing into that time we have been to see Cats in the London’s West End, visited our friends in Nottingham for a 40th birthday AND had a meal at TV chef Tom Kerridges restaurant.
Amongst all this I have been taking things slowly. I look brown, tanned and healthy and have lost a few pounds, so those Christmas indulgences are far behind me. Sorry to those who are still trying. Mine has been by accident really though. My appetite has been flaky and I have been feeling off.

I had got myself in a bit of a worry but have been chatting with Pete, my friend and today at the hospital. It could be my brain causing issues, however, i am not having any headaches, migraines or tingling or lack of cognitive behaviour. I am having light headedness, nausea and trouble getting back into my food. So we think it could my bloods /anaemia causing it. I was borderline anaemic.

The hungrier I get the sicklier I feel. I have avoided my supplements and meds now for some time and I am concerned that i cutting out some of the success I have had of late by not taking them, but yesterday was a prime example. I got up started my day in the usual rituals and threw it all up. I can’t decide if I am an anxious, neurotic or what… I am just hoping it is my weirdness and not anything physical.

I do know though that I have lost a few kilos, as they weighed me at hospital today.
I went to see the Prof who sadly wasn’t there today. Never mind I had a list of questions and was very prepared when I saw Nicky the other consultant.

I also had my first denosumab injection today. This I am to take every 4 weeks and a calcium and vitamin d3 tablet twice daily. The injection is a monoclonal antibody which is an anticancer drug and should help strengthen my bones. Great… I’ll have some of those apples. It does mean I do not need to have Zometa now.
Whilst seeing the consultant, we discussed the fact that Eribulin, a drug which has some great success for triple negative BC, is going to have its funding withdrawn… in March.

My eyes lit up a bit. I explained that I have been having TACE in Germany and that I had thought that since I was offered Eribulin last year could I may be get stuck into that if needed? She said, yes without hesitation. This is a relief. When I had heard the news yesterday that Eribulin was being removed my heart did sink. I thought, ‘Bugger’, I was offered this a year ago and had turned it down as I thought my current plan of action was a good option. I thought it would be just my luck that I wouldn’t be able to get it. Well, well, well. It seems luck is on my side.  I aim to start on the 17th February. It will be done day 1 and day 8 and it doesn’t take long at all. I was also told I could use my right arm for injections seeing as I only had three lymph nodes removed and have never suffered lymphodema.

I did ask about my head and whether I could have gamma knife now? I have to have a scan in February and if this looks like there has been some changes, new ones etc, then the next option will be discussed. This oncologist seems to think that as I have had Whole brain radiotherapy I will never be able to have that again. This is not what we were told. However, we will cross that bridge when we come to it.

I drilled down about feeling sickly and we agreed that trying me on anti sickness drugs would be a really good option and that i could mix and match or do as I pleased…I couldn’t be bothered to wait for the pharmacy so in the meantime I am going to try to overcome this stupid hang up and nausea on my own. I have started well. I was hungry and have eaten lunch. I definitely feel better once eating. It’s overcoming these tablets. I showed the consultant a list of my meds and supps and she agreed that some of them would make me feel a little unwell so go back onto them gradually. I agree.

I will get my self back to feeling energetic. Something so simple really does slow me down and me feel low. Silly really. I am also going to eat plenty of iron rich foods and see if that helps with the anaemia. It’s a bloody minefield… the body is such a mystery!

Anyway lots to look forward to again and so many jobs to be done. I will get there but in my own time. To anyone that i have promised to do something for, I haven’t forgotten (I don’t think!) I am just on go slow….
At the end of the month I have another visit to Germany booked. Of course I am not looking forward to it but I have to do it. I have to beat this bloody cancer.

Anyway my friend said to me the other night, he will buy me a dog when I am in remission. Martin, I haven’t forgotten…..

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