I have somewhat dusted my self off since my last post and I am pleased to say, some emotional balance is restored. I have had some fabulous messages of care and concern that have been cheer leading me along …. though, I really didn't mean to worry anyone and have felt a little embarrassed to be honest.
You see, what I omitted in my last post, and I am able to best assure everyone, now that the dust has settled, is that I remain stedfast in positivity. Yes…..the cancer diagnosis has blown my mind and for the time being, an undercurrent of sadness has established itself my world, but this does not mean that I have lost sight of the wonders in my world and the joy and the happiness around me.
This I guess is what being human and life is all about….. where sadness and happiness as seemingly incompatible emotional states can co exists …. where one emotional state can dominate over the other at times, and as it has done for me recently; set me off balance.
It's quite logical that I experience 'sadness' as I begin to re focus the direction of my long term hopes and dreams. But rest assured this year IS already being defined by immense joy; I will just have to 'know', that my emotions will fluctuate and this may happen in a 'nano second' when I become frighted or overwhelmed. I'm assured by the ladies in the 'living with secondary cancer' group within the Young Breast Cancer Network site (YBCN), that this is all part of the process and that this will get easier as time goes on…. This seems all the more doable with the presence of many cheerleaders that have spared a word and a thought for me, to whom I owe a debt of gratitude.
'Anyhow' (said in a 'Gill Shipman' like Scottish accent), apologies for the emotional waffle, the point of this post was actually to update you on the medical stuff, so without further ado…..
The results
I met with the Registrar (I cant remember his name) on 20th June and saw him alone initially whilst I learnt the results of my CT PET Scan. Danny, Sue; my XMIL and Russ came to the appointment with me, however I had decided before hand that I wanted to hear news of the results first. I was glad I did…… the news was the best that it could be, but that time alone with the Registrar allowed me to 'tune in' to the news and 'tune out' of others.
So, I learnt that I have several 'hot spots' (malignant lymph nodes) in my 1) right and left Supraclavicular area ( left and right collar bone), 2) left axilla (arm pit) and 3) left groin. It seems the one in the groin is unusual, and the Registrar seemed happy that I had already had my ovaries removed!
The Registrar went through my results with me using a written report and he happily logged into the images when I expressed curiosity about them.
There was certainly some 'Scanxiety' leading up to the appointment, so much so that I booked myself and my XMIL last minute tickets to see Celine Dion at the O2 for the evening of the appointment, hoping that it would 'void out' what ever news I had. I know I do this a lot ..... always have done; to find something that stops oneself from being paralysed by the challenges of life and why not....it's my way and it's worked for me so far !
With HUGE relief I was told that there was no sign that the cancer had spread to any other areas of my body and for that, I felt I had won the lottery and making Celine Dion a special memory making moment with my XMIL!
And while we are at it… although side tracking somewhat ; there were some more 'joie de vivre' and 'sugar coating the crap' moments ' at Royal Ascot this year at Ladies day!
Ok, so back to business…
Ok, so back to business…
The prognosis
I broached the 'prognosis' question, and to be honest I was initially a little frustrated that there wasn't a number given in terms of years of life…..I think I just wanted to be able to 'plan', you know; life, finances, work and well…..'stuff', but alas, it seems that this all relies on how my body responds to the treatment.
The Registrar explained that ladies can live several years and told me of a lady in the clinic that day that has been stable on Herceptin treatment after 10 years. I found this reassuring and have decided that this will be me….right!?…
I am also acutely aware that other ladies are not so lucky as the Registrar confirmed, so the focus shall have to be on the quality of my life…not the years.
How I feel about this: To articulate my feelings exactly, I'm stealing the words of Lesley Graham, who lost her life to breast cancer but not before campaigning for NHS availability of cancer drug Kadcyla
"living with cancer is like someone pulling the pin out of a hand grenade and forcing you to swallow it. The grenade might go off, it might never go off, or it might go off in the next 10 minutes"
mmmm……
The treatment plan
Well, with Danny, XMIL and Russ in the room….oh and Kath the BCN , the Registrar told us all that the treatment plan will start with 6 cycles of docetaxel chemotherapy which will be administered intravenously every 3 weeks. This is aimed at getting rid of the known 'hot spots' and preventing the spread of the cancer.
I will also be given Herceptin and Pertuzumab which are targeted therapies and I will be on this combination every 3 weeks for as long as it continues to keep the cancer cells from spreading. The Registrar has to make an application to the drugs fund for Pertuzumab as this is not standardly available on NHS.
Contrary to what I was originally told, I was advised that radiotherapy was not part of the plan, and this is because of the amount of 'hot spots' there are. Radiotherapy may be an option in the future.
I am booked for an echocardiogram on 4th July and a Pre Chemo Assessment(PCA) on 5th July 2017. The chemo will then all begin on 10th and 11th July, it will be the start of a life time of treatment for me and I will be scanned regularly to check how treatments working.
I had docetaxel x3 the last time around and am familiar with it's side effects. I hope to tolerate this as well as I did last time…… I will lose my hair again, a necessary evil, never the less it is not something I am looking forward to.
I have been pondering over using the cold cap to try and prevent hair loss. I may not be eligible for this, but anyway on balance I'm not sure it's the right way to go for me anyway.
I also had Herceptin the last time around and these side effects were more doable, although these will now be long term and I will be motored via echocardiograms for known heart related side effects.
Suffice to say I have a busy few months ahead of me but finally glad that 'the show is on the road'
In the mean time I will leave you with this article posted by my SIL on FB. Thanks Susan, it speaks volumes and worthy read if you know someone close affected by cancer.
click link : What your friends with cancer want you to know but are afraid to say
click link : What your friends with cancer want you to know but are afraid to say
No comments:
Post a Comment