…almost to the day, here I am back in the red ‘Big Brother’ chair.
Maybe not looking quite so much like a grumpy teenager but more like a wiser old lady who knows what’s coming.
I can’t say that yesterday was one of my best days. We left the house extra early and arrived at the hospital by 7.30am so I was first in the queue to get my blood tests. It was then a wait until 11.30 for my appointment with the consultant. The bonus was that Colin was able to get on with some work during this time, as he wisely brought along his lap top.
The doctor was his usual professional and empathic self who, along with my lovely new research nurse Diane, carefully explained the procedures and reassured me, once again, that it was very unlikely that I would have a cardiac arrest during the administrating of the new drug.
The results from my recent MRI scan were clearly explained and it became clear why I was having such excruciating back pain. Apparently the myeloma is growing around the base of my spine, close to the spinal cord. It’s because of this, that during my physical examination the doctor casually told me he would have to put his finger up my backside! (Sorry for the detailed information, I hope this hasn’t put you off your breakfast). As tears rolled down my eyes, I thought could this really be happening to me and wondered how much worse it could get. Still on reflection it was only a short process to check for any nerve damage and I was able to grip his finger quite tightly so all was well there.
I asked for his reassurance that I wasn’t going to become paralysed and that I had a good chance of living many years yet and he smiled kindly, in a fingers crossed sort of way, and said we have a long way to go yet.
It was then a trip to the chief pharmacist, who printed out a complicated list of drugs and procedures. Some days I will be taking 46 in all, so I need to be on the ball. I have found a new phone app that plays a lovely little tune when the next dose is due.
This was followed up by a long wait on level 2, my Parallel Universe. It was comforting to see Familiar faces who remembered my name and welcomed me back like an old friend. My cannula was inserted by my favourite, and expert at finding a suitable vein, nursing assistant. Then it was another wait for the drugs to be made up to my particular specification. They have to take my height, weight and recent blood counts into consideration, it really is quite a science and once again I am so grateful for the NHS.
Eventually the time came and I was given a 15 min bone strengthener drug (Zometa), some IV steroids and an anti sickness drug, all followed up by 30 mins hydration before the new chemo drug. This required the nurse to stay by my side and watch out for any immediate adverse reactions. It was a great relief when it all went through very smoothly, so after another 30 mins of hydration, the cannula was removed and I was free to go.
Unfortunately we hit the rush hour but we were home safe and sound by 6.45pm.
Once home, it was very important for me to carefully unwrap and organise my drugs, as I knew I had to take the next chemo drug 30 minutes after another stronger anti sickness tablet, and on an empty stomach. Having eaten very little that day and with the tempting smells coming from the slow cooker I was in quite a hurry to get the next process over with.
Last nights medication included, 10 tablets of another (new to me) chemotherapy drug called Cyclophosphamide, 20 Dexamethasone (40mg of steroids) sleeping tablets, drugs to prevent stomach ulcers, others to protect your chest and kidneys and another to warn away viral infections, pain killers in various forms and most importantly a strong anti sickness tablet. This all requires carful monitoring, so Colin double checks everything. I don’t want a repeat of last years overdose!
Finally when we did get down to eat I didn’t feel hungry anymore so I just nibbled on one of the delicious biscuits mum had kindly left behind. This was party due to my fear of possibly being sick despite all the preventative medicine I had taken.
So yesterday was a pretty full on day. Today, however shouldn’t be quite so bad. We don’t need to be in London until midday and if we plan it well we may miss the rush hour in both directions.
Thank you for all your lovely comments via this blog and Facebook, it really did help knowing you were there, by my side.
Scores on the board
PH = 5
MH = 6
PS. For anyone interested, the BrainBox is being put together in an easy, alternative format and will be available for pre-order very soon. For those of you who need to get invoices in before the end of March, or would like further information please contact us by email, or leave a note in the comment box.