June - Yet another treatment update.
It is now five months since Tash stopped having Herceptin and this is the first break from treatment we've had since January 2004. It is true that in the last few months we have had some nice moments, more at the beginning though, when we were so elated to be away from the regulation of her treatment schedule, that it actually felt a bit more like we were in a relationship again. As the months passed however and no information was passed on to us about when the trial she has been waiting for is actually going to begin, our initial high has gradually given way to more familiar feelings of apprehension and concern.
Treatment is not the hardest part of the cancer equation you may be surprised to know, it is actually the bits in between. How you, (this is a plural you, by the way, this is just as relevant to me as Tash) define yourself again in the world. There are many options; cry, be scared, run away, drink, stay silent, denial, find religion or my favourite stand up and fight - this isn't boxing you know and chemotherapy isn't a four minute round. To a degree our own rules of cancer club are part of this too and I cannot categorically say that we haven't at some point adopted the options in that list either, but 7 years is a long time and eventually you have to just face up to the fact that you have to get on with your life as best that you can.
We recognise that this is made considerably easier by the fact that Tash, with the exception of last year's Verona escapade, has never really felt a great deal of discomfort from her condition. Unfortunately this has started to change of late. It is not that Tash is now forgoing the 3rd rule of cancer club: have a party, but she says no to the second glass these days because she feels responsible for her liver (after all, no one else is looking after it) and because well, it hurts now. Not the dull "I think I may have overdone it" ache that some of us feel after a night out, but enough sharp pain to regularly remind her that all is not right with the world.
From the point of view of her partner, it makes me angry at the inefficiency of the NHS. Potentially, I'd reason in my more pessimistic moments, the delay could be removing extra treatment options from us by delaying the trial and allowing the cancer to spread. Sound a bit ridiculous?, well as you will read later on, this is not too far from the truth as it turned out.
Tash has continued to see "The Slev", her regular Oncologist over the last few months and like us, he has not had any meaningful contact with Dr Gallagher, the Oncologist who he referred her to in order to take part in the Lapatinib trial at Bart's Hospital. This week she was due her 3 monthly CT scan and so she arranged this along with a consultation with The Slev to discuss the way forward, as neither of them had heard from Dr Ghallager for over a month.
The week preceding a scan is usually a bit of a write off. In my last job I would find it very hard to sit in meetings and listen to these people waffle on about their mundane unimportant crap, how they must have this software update by the weekend or this delete done by tomorrow. Mind you I find that really hard to do anyway, but in the run up to the scans it was always doubly hard, the statement "we could find out that the cancer has spread tomorrow" was never very far from my thoughts. Enviably when this appeared in my head, the view outside the window would become more interesting than the conversation going on around me.
This week was no different and in our own personal ways we dragged ourselves through the week to Friday.
Walking in to "The Slev's" office as I might have mentioned before is very similar to being in a James Bond villans lair, technology abound, I often sit down carefully for fear of an ejector seat. He was on top form, though apologetic for all the delays we've experienced since his referral.
The summary was that our friends in the liver, who we deduce are numerous, are on average 50% larger than three months ago, so a 3.5mm tumour is now over 5mm. Ablation is no longer an option due to their size. Of equal importance are the blood test results, he informed us, as they indicate amongst other things how her liver function is going. So we were pleased to hear that things were still the right side of "not the end of the world", in fact, they are completely stable.
After an examination he could feel that her liver has enlarged to compensate for the tumour growth. "I think we have waited long enough" he said, preaching to the converted and picked up his blackberry and started thumbing out an SMS (this was a blackberry after all). "This is a wonderful thing texting" He announced "doctors do it all the time now to refer patients and do business and I thought it was just something children did...." Even with all his technology, it was his secretary who informed us that Dr Gallagher is currently on holiday.
The Slev decided that we would make a decision on the treatment options this Wednesday, maybe Dr Ghallagher will be back by then and we can commence at Bart's, if not then we are looking to get Tash onto the same trial at another hospital or failing that some other treatment (that will not in any way involve shopping or buying shoes, or arranging an expensive holiday).
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This month has also contained both good and bad news for us, Natahsa's Aunty Mary passed away two weeks ago, so our thoughts are with Uncle John, David, Michael, Christopher and Peter. Also, The Bragg family, who have been severely bereaved as a result of the storms sweeping the NSW coastline at present. The good news has appeared in the shape of a little Italian bundle of joy called Gaia, who was delivered to Piero and Laura Versace in Verona on Friday 22nd June, congratulations to you both and no doubt to the proud grandparents Lorenzo and Stefania.