The miracles shop is out of stock

It’s only Tuesday 24th February 2015 and my world has been turned upside down with the confirmation of Fluff being back, but there is no point in diving in to a pool of depression, as usual I have to pick myself up, dust myself down and get on with my life and the week is going to be busy and hopefully have a sprinkling of fun in it.

Andy’s brother Nigel & his lovely wife Nunu are over from Taiwan and staying with Andy’s Mum Maureen down in Warwickshire, they wanted to see me, I wanted to see them, they travel over every couple of years and I think we all recognise barring miracles there is a high probability this is going to be goodbye. Also you’ll have read in previous blogs about their amazing fundraising efforts for Clatterbridge Cancer Charity, close to £5,000 has been raised by them and their customers all strangers to us, so we wanted Nigel, Nunu and Maureen to meet the CCC team and to show them what the charity does with donations.

Wednesday is here and by lunchtime so are Nunu, Nigel & Maureen, Andy is at work but soon to head home, it’s fantastic to see ‘our family’ again and this time will be precious for us all. 

 

Andy arrives and we head to Clatterbridge where we grab a quick coffee as our  friend’s Elspeth, Louise & Karen appear to meet ‘the clan Shute’. We grab a photo opportunity so that N2’s customers in Taiwan can see where their donations ended up and some of examples of the types of projects funded by donations.

Nigel, Moi, Maureen & Nunu

Louise was giving us the guided tour of my almost second home of late. Clatterbridge came to be out in the countryside following WW11 previously being in Liverpool, at the time anything Nuclear was considered dangerous, too dangerous to have in a city centre so a site was chosen in the very rural village of Clatterbridge, initially not more than wooden huts it is now a state of the art facility with cancer treating technology so advanced and a team so pioneering some equipment they were or remain the only UK hospital to have. We didn’t get to see it but the next generation of equipment more advanced than the Novalis TX that my last treatment was done by is currently being installed and as of now this is the first and one and only ‘Varian Edge’ Cancer treating machine in the UK. We are informed that it is so advanced it can monitor internal organs that move and adjust the treatment beam in real time, some organs up until now have not been suitable for ‘Cyberknife surgery’.

Clatterbridge also has the only Proton Beam treatment machine in the UK and if I remember probably in Europe. It is specifically for a specific type of cancer of the eye (don’t ask me which or what I’ve got memory problems remember lol) Louise informed us patients travel here for private treatment from New Zealand, Australia, Asia and the middle east all contributing significant sums that benefit patients such as me on the NHS. CCC paid for the very specialist chair needed for Proton beam treatment.

We also passed the Research department where a dedicated team are seeking for the next ‘silver bullet’ to cure Cancer, any cancer, and this research is funded by CCC.

We passed the recently refurbished scanner changing area. Historically patients would change out of their everyday clothes into a gown behind a curtain one side of a corridor when the entrance to the scanner suites was the other side, totally lacking dignity for patients but perfectly acceptable under the NHS, CCC saw this as their opportunity to improve dignity and care for all patients and paid for the refurbishments, now patients go in to a changing room by one door then walk through a second straight in to the scanner suite.

As we walked the corridors we bumped in to Dr Haylock my Consultant Oncologist, with a smile he said “Julie, lovely to see you, what are you doing here? Aren’t I seeing you Friday?” I confirmed it is indeed this Friday and we introduced our family, Louise explained Nigel & Nunu’s generous achievements the other side of the world, it was an added bonus for them all to meet and it further demonstrates the level of care I’m receiving when a busy consultant can a) remember my name and b) takes time out of his busy day like this.

Charity funds have been spent on pagers so patients can go and have a drink whilst they wait for appointments to supporting a fleet of SIX cars provided by an amazing CCC supporter. The cars transport nurses and their specialist kit to patients at home who are too ill to attend the hospital. It is very humbling to see the cars, to hear the story behind their donation and it puts our collective (family & friends) donations to date in to perspective, we must do more but also, we realise every penny matters, literally EVERY PENNY!

Children/s Conservatory funded from donations to CCC

Thursday morning, we are all up early, Andy has to go to work, I have to take my steroid at 08.00 with food, Maureen is an early riser and Nigel & Nunu were up, they had to get down to Warwickshire as they were flying home the next day. It was hard for all three of us to say goodbye, deep down we know it truly is, the hugs as a result are stronger, Andy has left for work and I’m left to wave our visitors off, at least I don’t have to head to the laundry room to shed my tears today, ‘my empty house where no one can see me cry’…

In days gone by I’d have had the beds stripped and changed and the washing in the washing machine by lunchtime but these days such simple chores are too much for me on my own. Andy comes home from work after his twelve hour day and bless him, he now has to strip beds and fill the washing machine under my supervision lol. I let him off making the beds hehe..

Its Friday 27^th February and we are Clatterbridge bound for a routine appointment with Dr Haylock. On time as usual we were shown into one of the consultation rooms and chatted with one of Dr Haylock’s Nurses, she asked how I was and I explained not too clever, the increasing seizures and of course my concern that fluff was back, she left the room and went into Dr Haylock’s office and within a couple of minutes the man himself and two of his nurses were with us. The usual greetings were followed with a confession “Julie, I’m so sorry I’ve only just heard of your tumour coming back, the team at Walton haven’t passed the information over yet, I thought when I saw you Wednesday that you didn’t look well, now I can understand why”. We discussed the surgery, we hadn’t got the date yet and a little surprise was expressed at the Scan being scheduled for almost three week’s time.

Mr Haylock went on to discuss the post-surgery treatment options that ‘we’ will/can consider. It looks very much like my options are limited. There is just one form of Chemotherapy open to me called Lomustine or somehow abbreviated to ‘CCNU’. The only other options open to me are to consider Drug Trials and it seems my options are limited here too. The one trial comprises using the previously failed Temodal (but in a different presentation) with a spray called Sativex. Sativex has its origins as a derivative of Cannabis and although it only has trial drug status for cancer in the UK it is already legally available for a certain group of patients with MS. For the recreational drug users amongst our readers I’d say “Down boy!” this is not cannabis as you know it and no it won’t give you a high or the munchies lol. I’m dubious about this as my previous experience with Temodal leaves me with doubts. The only other option is a drug trial with a James Bond. CIA/MI5 style name, it’s called Checkmate143. It sounds promising BUT, just 24 hours earlier Dr Haylock had received an email from the worldwide trial team that no more patients are to be added to the trial. There is a slim chance the trial will allow another 120 patients on to it worldwide, can I be ‘that lucky’ to be one of the 120 IF it happens? I’ve got to come through my surgery unscathed first. What has become apparent is that all options are narrowing now. We knew this day and time would come but it’s only when you get here the truth dawns on you, inside I’m like jelly, Andy is asking questions, I’m zoned out of listening as the reality of my predicament is howling like a banshee inside my head, inside a week I’ve heard fluff is out to get me and it seems the drug gods are too. I’m entering the “I need a miracle territory” the only problem is the miracles shop seems to be out of stock right now…..