It has been nice not to have my life dominated so intensely by appointments, yet having invested so much time and effort into all this cancer lark, it also proved to be a bit of an anti climax…It is almost like …'what do I do now!'….I remember Mandy, my booby buddy tell me this would happen way back before my treatment even began.
I have of course been a busy bee and I have been to Spain and France, but from a medical point of view I feel a little left out on a limb!!….Logically I know that I am not …. After all there is a clear treatment plan for me…never the less it seems I am mourning the loss of contact with my medical Team and the 'oncology bubble'!
You will note that there has been a distinct lack of posts this month, and I wish I could say that this is because I have had better and more exciting things to do, but the truth is that things have felt quite wobbly in my world….Despite many attempts and 3 posts in 'draft status, I have simply struggled to arrange my thoughts and words. I get a lot out of blogging, and this, my longest bout of 'writers block', has been frustrating and even 'stressful'!
I'm sure that the post treatment withdrawal has had a part to play in that ,but I also recognise symptoms of post holiday blues. I'm sure it is also interlinked with the 'limbo period', I appear to be in in terms of my personal circumstances.
I'm not back at work yet and I am still living with Steve until the tenants move out of my own house. I am thankful of the 'practical' limbo arrangements, as they have given me an opportunity to plan my move and return to work along the route of least stress and financial burden. On an emotional level though, it can be tough making this arrangement work given the associated break up baggage and Steve's caustic moments!
Saying that, I know these are just bad day's…I have some great friends and family around me and there is enough strength, confidence and peace at the core of this 'old cookie' to help ride out these times , for there is certainty for me of fulfilling and exciting times ahead!
I'm building windmills - Just the proverbial ones though Jo Jo (doesn't like wind farms)
Having given myself a 'blog break', I am pleased to report that my thoughts and words are flowing nicely today….. I think something rather beautiful that happened yesterday, may have been a kick start ……You see….. I had a play date with baby George and his yummy mummy Gilly Bean and she announced that I have earned 'Aunty' status with baby George!!
I'm rather pleased it wasn't 'grandmother' status….. A few times I have been out with Gill and George in public, Ive been asked whether I am the grandmother!! Tut!
Anyway, as per the whole purpose of this post; I attended my 6 week post radiotherapy review on 18th August with my XMIL, Sue in tow!!
The appointment was pretty routine, but they always have an underlying sense of tension and dread about them for me and I was glad of Sue's company.
The Dr, was happy with my progress following her physical examination of my 'manky boob' and she has referred me back to Dr Dawson (YAY!!) for discussions about reconstruction….another Yay!!… My reconstruction won't happen for some time…. thank goodness….but at least I'm in the system!!
I spoke with the Dr about an article I read in the Daily Mail that reported on a 'pioneering drug therapy' trial, that combines the use of Pertuzmab and Herceptin for first occurrence HER2 breast cancers. It seems Pertuzmab is only approved in the UK for stage 4 and secondary cancers and this article reported benefits of a 'joint attack on a primary breast cancer', like mine.
I was aware that this was a trial, so I wasn't surprised about the Dr's negative response about it's availability for me, what I was surprised at was my own rather defensive response about the manner of her reply.
The Dr had not heard about the trial and I interpreted her response to be quite rushed and dismissive of my search for an intellectual discussion about my long term treatment options, and probably some reassurance.
With my prognosis at 5 and 10 years being what it is, of course I'm going to be asking questions and I felt annoyed at her factual, probably text book, standard answers e.g.
DR: "it has not been approved for your type of cancer"
ME: "so is about the cost of the drug"
DR: "No, there is no research about the benefits"
ME : "This is what the article is about"
DR: "There are lots of claims out there in the media it may be more harmful than the benefits"
etc...So yes all logical answers… in my mind I was probably 'fighting for my life' and the 'standard', text book responses just didn't satisfy me. I left the appointment feeling tense about the exchange and on reflection, the only satisfactory conclusion to that conversation for me would have been some recognition of my fears for the future.
Anyway, on the subject of prognosis, and a query I had about the pre treatment prognosis, the Dr pulled up the stats on her lap top again and when asked let me have a print out of the results.
The stats. were laid out in graph form and compared prognosis with and without the range of treatment I have been given. Statistically speaking 66% of women with my type of cancer are alive at 5 years and 29% at 10 years…. It is quite scary to have the numbers in black and white, but not as scary as the 15% at 5 years and 1% at 10 years without any treatment.
The Dr was keen to point out that stats are based on 5 years worth of Tamoxifen and suggests that this is improved with the 10 years that I will be having the drug. You can see there why I was defensive about my query about Pertuzmab!
I will now have 3 monthly reviews with Oncology for the duration of my Herceptin treatment and I have an appointment with Mr Dawson the surgeon on 4th September!
With the appointment all over and done with, my day ended most excellently at a BBQ gathering in the company of Danny, Becky , Sue (XMIL) and Rob (XFIL).
one of my most favourite pictures- knowing your son is happy -priceless xx |
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