I made the mistake this week of posting on my social media, that I had for the first time in months, no hospital appointments….
Thursday afternoon two missed calls on my mobile and an answer phone message on the land line when i got home, your needed in clinic tomorrow at 13:30, bloods needed first thing in the morning. What the….???
Thankfully the oncologist rang me at 6pm to explain, I was not eligible for the drugs trial mentioned last week, this was due to it being very hard to record/measure positive results in bone cancer, so they wanted to get on with the initial plan A, which i now had as plan B.
Its been lets say a little challenging at times with Dr’s recently, not because they are rude or unhelpful, but because I feel us normal people need something/someone personable to cling on to, especially in times of uncertainty and in situations whereby it appears the language being spoken to you is unrecognisable, medical terms that seem so second nature to them bring out frightening responses in yourself, my husband Steve and I get by in life on humour, Dr’s do not, I swear our poor oncologist see’s us as the couple who laugh and joke at inappropriate times and ask never ending questions.
I have always been polite and the stereo typical english person, never complain, take at face value that a professional person is always right, and not really questioned situations, now it seems you have to wrestle for information about your own body, and not feel guilty about needing it explained in a format you can understand, this is my life after all, it still seems very alien that someone who has probably never taken any of the drugs being prescribed can be so blasé about the side effects and how you will feel on them.
However I think being honest and open even when they seem almost inhuman has paid off, to the point we got a laugh and a smile out of him for the first time ever, like the sad people we are, we felt it deserved a high five as we walked down the corridor…. its the little triumphs you celebrate.
So here I am, with my very expensive, only just affordable to the NHS since January this year Drugs. I understand £3000 a packet, and thats 21 days worth.
I have read the side effects for both of them several times over, I’m probably being a drama queen, but I cant get the instant reaction I had with chemo out my head, how much does the mind mess with you.
Effects more than 1 in 10 people:
Reductions in white and red blood cells, feeling of tiredness, decreased appetite, nausea, vomiting, rash, hair loss, prone to infection, not to be in large crowds & people with colds, and by day 15 apparently I will be fit for nothing and on the sofa, welcome to the new normal, what with all that and the onset of menopause, I cant wait.
Text the husband who was at work and said, ‘I’ve taken them’ his reply ‘And?’ my reply ‘Nothing I feel ok’ it sounds crazy typing it now but it all comes back to the fear, fear of what could happen and has happened historically, I went to bed my heart racing and my breath seemed short, hideous nights sleep but most likely all caused by anxiety.
Saturday arrives and nothing sinister has happened in my sleep.
Back to Kings Mill Hospital Monday for more blood taking, Wednesday for the monthly injection of Denosumab to support my bones, more blood the following Monday, and oncology Friday to find out how my body is standing up to it all, the Costa card really is taking a hammering.
My goal I think for the rest of 2018 is, to be able to get up the four flights of stairs to clinic 15 and not be out of breath by Christmas, I am training for the C2C after all!