They say there is always a first time, for me I have never hit the jackpot before now.
Three weeks ago Kirk had the unpleasant duty to give me this news. Under other circumstances it would have been exciting, but missed the mark by quite a large yard this time.
With this disease there are many variations/types of which there are three primary types. Kirk named them as Hit 1, Hit 2 and Hit 3 with each one carrying varying degrees of success in isolation to each other. With his solemn delivery he patted me on the knee and declared I was the unfortunate one to be hit with all three hence Epoch fought a hard battle but lost.
My wish to fight on brought Methotrexate and Cytarabine as the next treatment option…….. which was working beautifully over a period of a month or more. So well in fact this excited Dr Nik who orchestrates the gathering of stem cells or donations from patients and donors alike with a view to stem cell transplant. My cell count could not have gotten any lower and was perfectly free of those nasty little cancer buggers making it possible to gather mine, treat and develop them ready for the big cure.
Tim and I, the family, friends, Doctors, nurses and scientists launched into positive actions for this to be carried out. My dear friend Lorna Sof and her husband Mr Sof in London contacted me sharing their experience of this procedure when Mr Sof endured the same treatments. Dr Nik’s face lit up when I relayed this information. So from all accounts it was looking good at this time.
So the two ladies responsible for the next steps of the collection, Annette and Kari visited me with a fully typed up schedule for this collection to take place. Far from easy and naturally required a firm commitment of endurance from me. It meant my willingness and ability to sit with straight, still arms with cannulas in the main vein of each arm near the elbow…… No cups of tea and or food for me over a 6 or more hours period. Tough ask.
With the potential of a successful result I was prepared to do this unequivocally, forms were duly signed and a firm commitment was made. As mentioned in my last Blog the collection was completed.
After the collection I was allowed home for some well deserved rest at the the new unit in Coopers Plains. During this time appointments were kept with Kirk and Nik with scans and tests as normal process. Unfortunately the series of the scans showed a return of the disease in a couple of places including the spine. Aggressive to the max. My right eye had become unfocused and slightly turned which forced a pirates path for a few days,
not my best look but none the less it helped to reduce the strain on my eye. It is now almost back to normal and the patch put away for another day. Thanks really to lumbar puncture procedures where Methotrexate was again injected into that area.
Returning to the townhouse that Friday was made so much smoother and easier to bear with the presence of Mary and Adrian (Tim’s parents), who had travelled down to watch their grand son’s cycling, as well as catching up. This extraordinary couple enveloped us in a group hug which beamed hope, love, support from every fibre. Without this, Tim and I would still be a blubbery mess sitting in a dark corner!!!
Tim’s brother Barry and his wife Nicole visited for a BBQ dinner, laughs and chats. Such a precious and well needed input to our lives. So enjoyable. It was kinda lucky they had the cycling champs for Luke, in Brisbane. A long trip from Perth would not have been an option otherwise I’m sure.
We were as you can imagine very deflated when seeing Kirk at our next appointment as the subject of home and palliative care needed to be raised and some very broad prognosis information was received. It was emotional and confronting – Tim, Kirk and one of my loyal nurses Clare, Raj the new Register on the ward and of course for myself….as you can imagine, it was not an easy thing to accept right there and then. Incredibly disappointing to say the least! Tears were shed by all but the support and love of this group didn’t falter ever.
Kirk with his usual delivery made such news more than just clinical, it was obvious by his appearance that he was hoping for far better news for me. With his usual pat on the knee he went on to discuss the next steps in the treatment plan of top up chemo maintenance to control the disease as best as possible and keep it at bay for as long as we can grab..
So on with a new range of chemo and the never ending medication that comes with this process. I have accepted the fact I don’t have that far off distant expiry date anymore, but it has been heartbreaking coming to terms with the fact that I’ll be leaving Tim, Steven etc behind. That is hard, but it must be part of their own way of acceptance. Eventually it will be there.
The acceptance on my part however does not mean I have become resigned to giving up the fight. No way! I intend to fight a very hard battle and even with the odds against me, I am aiming for success in having time…as Kirk said yesterday it could be a month, it could be a year or it could be a dozen…let’s aim for a year at least. Nothing to lose.
Our current situation is managing the various aspects of my condition back to my being completely independent again. Adrian organised a wheelchair for me on our return that weekend to Maryborough. Kathy from the palliative side of things visited and she is working on that plan which will assist. Our GP Melissa is well on board and in touch with Kirk. So many irons in the fire! All for my well being.
My daughter and grand daughter arrived from Perth. Here till after Christmas at least – it’s great to have them here for laughs and chats.
My next blog will explain with humour I hope, my new drug regime and general routine. The new steroids have made me hungry and I nag the others for little bits to eat. At this rate you can expect a very round and chubby me soon.
Till later in the new week….take care and thank you for staying by…my messages and the comments, my emails etc from so many of you! I find it so inspiring and helpful and it urges me on.Bless you…I am so lucky.