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One of my pet hates is starting any sentence (spoken or in print) with the word ‘so’, I don’t know why, it just does not seem right. But on this occasion I see no other option. Here goes..
So, here I am banging on and on about Tamoxifen for what seems like a decade and it turns out that it is not the only culprit. It seems that Chemo Brain is also involved in messing with my quality of life.
Rewind to a couple of weeks ago (of course if you are reading this more than a few weeks after this post is published, then that becomes redundant . For all I know this post could have gone through some space time continuum on some crazy loop where you end up talking to Frasier Crane, but I digress).
After being told by various people that there was no alternative to Tamoxifen, SJ , by chance, spoke to my breast care nurse, Sarah and explained my problems and arranged an appointment with the brilliant Dr Kristeleit (who in the past I have referred to as Dr Chemo).
I was back on the MacMillan Brook Unit, where I was first told about this bastard disease, where I had my chemo and where the wonderful people there made me well again. This may seem strange, but it actually felt good being back. I imagine for the very reason that I just stated. They made me well. More power to our wonderful NHS!!
I said that I thought it was not an option. He took me off Tamoxifen, which I had been on since January 2012 and replaced it with Letrozole, which is a hormonal therapy drug. It is used to treat breast cancer in women who have been through the menopause. As usual due to the lack of men that have BC there is still no specific drug for us. That is just the way it goes.
He explained that it may or may not be any better, side effects wise, than Tamoxifen, but as he always says regarding cancer treatment ‘Everyone is different’ you can never tell how an individual will react to certain meds. Time will tell. He also informed me that it was now policy to give us all these drugs for ten years now instead of five, so fingers crossed. Still he told me there are other alternatives if these do not work.
He then told me that the chances are that it is not just Tamoxifen that is the cause of my poor quality of life and told me about Chemo Brain. I had heard of this but not in great detail, I assumed that it was just something that happened during chemotherapy treatment.
It is actually a common term used by cancer survivors to describe thinking and memory problems that can occur after cancer treatment
Some of the symptoms that I have are
- Difficulty concentrating
- Difficulty finding the right word
- Difficulty multitasking
- Short-term memory problems
- Trouble with verbal memory, such as remembering a conversation
- Trouble with visual memory, such as recalling an image or list of words
It’s unlikely that chemotherapy is the sole cause of Chemo Brain. Researchers are working to understand what causes it
It could be that
- A cancer diagnosis is quite stressful in itself and this can cause memory problems
- Certain cancers can produce chemicals that affect memory
There is no standard treatment or medication for this as yet and although the general consensus is that it is a temporary condition, no one seems to know how long temporary can be in this case. I for example have had these symptoms since about the beginning of 2013 (and that is a guess because of my memory)
The recommendation is to do brain exercises. I now watch as many quizzes as I can and I am ironically pretty good at these, but cannot remember how to spell ‘because‘ or what I was talking about 15 seconds ago.
( I had to spell check ‘because’ again) (and there also). ( I better stop this or we may actually end up in some space time continuum on some crazy loop where you end up talking to Frasier Crane)
Still at least it is good to know what is causing these problems.
Just to mention that I had another run in with the nurse in the Mammogram Dept See here before I saw Dr Kristeleit.
I went to query my Mammogram appointment. I was told to go to a certain room, where I was met by the same nurse as last year. She was a bit rude to me and we had another shouting match. She remembered me. She said that she would do my mammogram then instead of next week because I was annoying her. I am not an annoying person, but we always clash. I hate confrontation. Still, saved me another trip to the hospital. I am aware that men with breast cancer are rare and I almost feel as if she is persecuting me. Hopefully she will have worked on her person skills by next year.
I am still working with MacMillan AND Breast Cancer Care. I think it is healthy to involve as many organisations as possible in awareness and both these organisations are really good at it.
Also there should be another short video from me for Male Breast Cancer Coalition soon, with me going on about Chemo Brain. Not to mention (although I am) some publicity about MBC for Leyton Orient Trust ergo Leyton Orient fans (I would rather not talk about the team at the moment thank you very much)
My friend Janine Booth a bloody great poet, activist, and Peterborough United fan, announced this week that she has contracted the bastard disease . As anyone that knows her would expect, she is tackling this news head on.
I would like to share a poem that she wrote a few hours after receiving the news.
TUMOUR HUMOUR (Titter ye not)
They’re big and they’re flopsy
They had a biopsy
Wore a gown like a nightie
My clothes in the lockers
Some people like me
But I do have my knockers
Tubes in my boobs
Taking bits of my tits
Then I got the answer
They will be pointing
Their surgical pistols
Straight at my Bristols
If I laugh at my thrups
I can cheer myself up
And do what they expect of me:
A successful lumpectomy
My friends are all sending me kisses and hugs
Their very breast wishes to Janine and her jugs
You can read more of Janine’s poetry at
That’s is all for now, except to mention that I was watching The Chase and to the question ‘What was Rasputin’s first name’? I answered Ra Ra. Not sure why SJ found it so funny
Love peace and Picard and Dathon at El-Adrel