It feels like a long time since I have written any blog posts on here (and I do apologise for my silence).
What can I say??? This being properly poorly escapade is really taking some getting used to. This is probably because – although I have official documentation on NHS letterheads that state I am seriously ill (to the point of it being not exactly life-extending) - most of the time I don't actually feel as though there is anything wrong with me.
OK – so I seriously considered calling an ambulance yesterday because I honestly thought I was running out of air. A clue – if I know you and I say “I am alive – put it that way” (and I am not smiling or laughing when I say it) when you ask me how I am I suggest you start worrying about me and not (as one of my friends did when I was seriously on the verge of calling an ambulance) laugh and say “you do make me laugh sometimes”.
So – where are we now???
I have had two appointments with the Oncologist and two appointments with the Heart Failure Nurse. Oh – and an Ultrasound Guided Biopsy.
The Oncologist is a nice lady (so is her Registrar). I am on Tamoxifen for the foreseeable future (the next couple of months at least). So I managed to dodge the Chemotherapy for the time being.
The first time I saw her the Oncologist did ask me a strange question which – to be honest – scared the living daylights out of me. “Has anybody told you you have got Marfan's Syndrome?”. Apparently I have got a few markers for it – one being my height (since when was being half-Dutch a symptom of a Syndrome???), one being slightly more flexible than most people, the last one being having a high palate (the top bit of your mouth). After “never heard of it” passed through my mind the next thought was “Good grief – not another thing I am going to die of???”.
Oh yes – the Oncologist wanted me to see a Cardiologist so they could advise on the best treatment for me. I am now in possession of a copy of the letter she sent to the Cardiologist in question (dated on the day of my first Oncology appointment). After seeing the first name of the Cardiologist I don't hold out much hope of a quick appointment – I have experience of “Medical” humans who answer to that first name (not as a patient though) and they seem to operate in a timezone oll of their own.
My next viewing of the Oncology Department will be in approximately three months (am waiting for the confirmation letter to come through).
The real downer is the Heart Failure thing. Although I did get a bit of a smile out of Friday's appointment (thanks to my very weird sense of humour).
Apparently the Heart Failure Nurse now thinks I may be a “Cause for Concern” (not as much as I think her scales are – but more about that in a bit). I have been either upgraded or downgraded (depending on how you look at it) from “I would like you to see a Cardiologist” at the first appointment to “I want you to see a Cardiologist at the second appointment.
If you read the blog post about my time in hospital you will know that the Nurses were worried about my blood pressure even then (it is lower than normal).
When you feel like you have done a circuit of Hinckley town centre on foot trying to find the hospital (thanks to Google Maps telling me to get off at the wrong bus stop) – you would expect your pulse and blood pressure to be raised due to the exercise??? Oh no – not mine. Apparently they were both lower than they had been the first time I saw her. Hence the upgrade (or downgrade) – and an ECG “just to make sure your heart isn't going to go into a strange rhythm".
Remember I something about me getting a smile out of the appointment due to my weird sense of humour??? Well, it was connected with a set of scales – a slightly less than accurate set of scales to be exact.
As a result of this flipping Heart Failure I have to weigh myself daily. If I gain or lose 2kg (or 4lb) in two days I have to either contact my GP or the Heart Failure Nurse because it might indicate a fluid imbalance. Fair enough – I weigh myself every day and (even though I wish I could gain a few kilos) I am now between limits.
On Friday the Heart Failure Nurse told me to step on her scales. Now – I know my sight is not all that good (and her scales were the old fashioned analogue ones) but even I could tell you that there was something wrong with them. Either that or I had managed to lose 4kg in the space of 6 hours (in which case I would definitely expect to be back in hospital). Luckily she admitted the scales were dodgy.
Now the only major concern (as far as I am concerned) is the argument between the Oncologist and my GP regarding some overdue medication which I am supposed to have monthly. I am not going to go into the story but – what I will say is that I am now worried that it may have an adverse impact on one of my other medicines if it doesn't appear soon.
Well – now you know as much as I do.
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