Alton Towers

Andy here... Even in times of adversity you need to smile and laugh, as you know last week was yet another turn on the rollercoaster journey our life has turned in to yet whilst tragically sad at times we've made it this far through fantastic friends a lot of you I now consider friends from your amazing blog support. Also from our desire to demonstrate that severe and terminal illness doesn't mean you should just go into a downward spiral of depression though I can understand those that do go that way, all I'd say is you were brought into this world to live not to die so our philosophy is live for the moment and the laughs, they make even the darkest day seem better....

I think (know) some of you will want tissues but you'll also hopefully find something to smile about below too..

Its Saturday, Casper called from Holland, he's due over on the 15th, about 40 minutes into the conversation he asks, "Am I going to be too late getting there if I leave it until the 15th?" I truly cannot answer but my gut feel remains that Julie does not have long despite improving from the blood clot but I cannot second guess this beast, past experience says it can change lives forever in 24 hours" Casper decided there and then "I'll see you tomorrow" thirty minutes later I had a copy of his flight booking/boarding card. We are truly blessed to have friends like many of your are and this journey has been made easier be it just kind words, be it 'mercy dashes' or charity fundraising, we are blessed.

I've got my routines now, despite not needing to wash or iron for the last ten plus years my daily routine now includes some kind of house work. All that done the last few hairs on my head still need trimming occasionally and I pop around to our dear friends at 'BarberAnnes', Jeanette has been a true friend over the years and she's in and does my hair, when with friends 'this close' my emotions are just bubbling under the surface, I can be a hard ass at times but at times like this I'm fighting back the tears, a hug from Jen filled my eyes with tears but thankfully they never fell, discreetly I hope I dried my eyes and needed to leave before I made a total fool of myself, It's hard for the team here too I know for Salon Owner Anne has been battling Cancer for a couple of years now, her daughter works at the salon and I've seen the impact of others discussing this evil disease in her presence, I recognise its not fair to burden these lovely people more, lol I did get a lollipop for being a good boy haha.This week two sets of friends have travelled from Doncaster to see Julie, we're both grateful that friends far and near are supporting us, with Julie though its a finite line between her seeing a few and being overloaded right now 3 really is a crowd to her.. The Nurses here I have to say are amazing, they're all unsung heroes they're kind, compassionate, humorous and patient even with the most trying of some lazy arsed patients who seem to think their buzzer is a kind of butler service, I wouldn't have the patience to deal with these Patients! Julie amazes me I suppose her time as a care worker gave her a perspective but things like if she needs a bed pan or moving or whatever its often a case that she'll say, I'll wait until after they've done the meals, you can tell the staff have warmed to her they cheekily (and with her permission) grab a quick squirt of Julie's Joe Malone perfume and Julie's always got a smile for them despite her predicament. As she drifts in and out of sleep I nip off and grab a coffee or some fresh air, sometimes she's still asleep others it's "Where have you been?"...

I came back and dinner had been served, there was the tiniest piece out of the corner of an omelette, she's still not eating... As  I go to leave after our good night kisses out of the blue come the words "Jaffa Cakes", now we've had some pet names between us in the past but never Jaffa Cakes! "You want Jaffa cakes?" I enquire, "Yes please but don't do your usual and bring me in a case full!" Encouraging I thought...

Sunday and Julie's brother Mick and his wife Sue are visiting from Grimsby, going back the same day. I arrive on the ward with a carrier bag full of iced lollies, the staff are grateful, I'm even more so.
Mick & Sue are waiting for Julie is being sorted out by the Nurses and she wants back in to bed.  As we enter the room, I'm almost gobsmacked Julie looks pretty damn good, I actually made the comment to her that "I'm sure when people have read the blogs and updates I've put out about how ill you are and that I think you have little time left that when they arrive in here like today they think I'm making it up"... I'm not, whilst there is a marked improvement things still aren't right and ably demonstrated by Julie announcing her big toe was curling upwards which is the pre-cursor to a seizure coming on. Her leg started to shake, Julie asked Mick & Sue to ignore us and not to speak and distract her as we went into our singing routine, I feel a total prat singing twinkle twinkle little star but it works for Julie so its worth it. I had to dash and collect Casper from the airport before trekking back in to the ward, I said my goodbyes and thanked Mick & Sue for coming over in case they were gone when I got back. Sure enough Casper & I missed them by 20 minutes. Jules is thrilled to see Casper. We took advantage of the staff's kindness and extended visiting hours slightly before we headed out for dinner at a great Wirral Restaurant 'The Pollards Inn'..

Monday and I'd decided we would leave visiting until late on, I'd managed to get Emma's partner Bob to kindly bring over Julie's Dad and Aaron her son to visit. I've recognised for sometime now that almost any visit by loved ones from a distance that any goodbye could be the last goodbye, I am certain now that we have made our last trip to Grimsby so with Bob coming over to see his only daughter I want him to have as much time as possible without distractions.  Casper & I hit New Brighton waterfront and as its a bank holiday Monday its busy and we walk and talk, he's a great listener and he can give me a different perspective. I'm truly struggling over what to do for the best with Julie, I do not want to lose her, equally its about her quality of life and that's never going to be good again, If I continue to suggest she reconsiders her journey plan am I being interpreted as wanting to get rid of her, its the last thing I want or want to be accused of, I am still not making sense of this in my head, all I know is ultimately any decision has to be made by Julie no one else.
We went for lunch to La Tasca, probably the poorest ever customer service experience in a particularly quiet restaurant, I actually told our waitress that her boss was in my very none too humble opinion probably the worst Restaurant Manager I've encountered and with 20 years experience of the catering trade and having eaten in more restaurants than most have trust me she was appalling. Ha, visit trip advisor for the full review in the next few days hahaha..

We made it in to the hospital and Bob, AAron & Bob were already on their way back to Grimsby, I'm relieved her dad made it over especially with what follws...

Whilst we are talking Monday night Julie said "I know fluff is back, I know my body and it's not right" I've recognised this for sometime but was hoping the chemo was taking its time to kick in, the blood clot is a bi-product of the chemo and Julie's tiredness making her more and more sedentary.  ... 
Julie has called it right every time on fluff, I don't doubt her or my own eyes.. There are tough discussions to come I can see.  Its also been explained that this team feel they have done all they can for Julie now and they intend to transfer her to a Rehab Unit at Clatterbridge, it could take up to two weeks due to a shortage of bed spaces, in the mean time she remains at APH. We haven't spoken about it but we both know Julie won't be coming home to 'Shute Manor' now.....

To compound these revelations before we left I asked Julie how her mouth was, Cancer patients suffer with dry mouths and are susceptible to mouth ulcers, Julie has one on her tongue, has had for a couple of days, she is being treated for that too. We've got swabs with glycerine and lemon on them to refresh her mouth sods law she doesn't like them when two days before this Mr pre-emptive here orders around 500 of them for her privately... She said "I want to brush my teeth" so I grabbed her toothbrush & toothpaste found the equivalent of a hospital papier-mâché spittoon type thing and Casper & I stood guard with tissues to keep her tidy, not easy doing these things almost horizontal in bed.  We got her sorted alcohol free minty mouthwash too. I moved to the window side of the bed to reach over to plant half a dozen good night kisses on her lips as we were leaving, Casper & I swapped places it took 20 seconds at the most, as he leaned forwards to hug her goodnight Julie looked at me and said "Do you not want minty kisses then?" I was floored, In shock I just said "I just kissed you hunny" the response was "When?".......... I should have stayed quiet, acted dumb and made light of the first comment and gone back and kissed her, I saw the puzzled look on her face.. I hate this sodding disease!

Tuesday and I picked Xena up on my way over from work and she had made Pumpkin Pie, Xena is Canadian, a dear friend and she and Julie have been working their way through a mini-bucket list thing, pumpkin pie was on the list. She also gave Julie's legs and feet a bit of a pamper, what a star this lady is, I left them alone, sometimes there are times I just don't need to be about there are times too that to be honest I need a break from visiting, from my daily routines but again I am constantly torn in how it looks if I'm not there or not going... I suspect other will say we understand Andy but my head works differently and I truly struggle with the separation.... I went home where Casper was working from our dining room, at 530 we headed in to the ward, he's getting the 'red eye' to Amsterdam tomorrow morning and although back in just over a week I want him to have time alone with Julie, a business acquaintance that fast developed into an amazing friendship of over 9 years they deserve their time alone 'just in case' Xena & I hit the coffee shop and I spent an age updating those who have kindly messaged me... Shortly after we returned to the ward. In between all of this Julie was moved to a room of six patients nearer the nurses station as her buzzer in her room wasn't working and the nurses want to keep an eye on her, I'm worried how she'll cope with 5 other patients and their visitors. There were other issues, the drug injection Julie is having to address the clot is also thinning her blood and preventing clotting, six hours after the injection today the injection site is still 'slowly very slowly bleeding'. One of the Nurses had blood tests arranged and it seems that Julie's platelets are extremely low, they're too low for her to even consider the next course of Chemo that is due to start on Friday.... That in itself is causing problems, I'd spoken to Helen her specialist Nurse at Clatterbridge to advise Julie is in APH and querying how we go about Friday. Crucial too all of this she and I agree that a lot depends on what Julie wants to do about continuing with her Chemo, I said I'd have the discussion tonight, Helen asked me to ask the APH team if they felt Julie was well enough to attend Clatterbridge and if so to arrange an ambulance transfer... This was all pre knowing her platelets have dropped...  Helen did say Julie could go up to 2 weeks beyond the scheduled treatment date with no ill effect. I asked about the next scan, it's standard procedure to scan after 2 months of chemotherapy so we have another month at least to go....

I raised this with Julie on arriving on the ward with Casper, Casper politely stepped out of the room, Julie wants us to discuss her next stages when we are totally alone, I only added that I felt she should go with the next course of Chemo irrelevant for what has she to lose (now)? These are truly rough times they're tough on us both for differing reasons, there are times right now I wish I wasn't a grown up.... Julie added, "the good thing about being moved to Clatterbridge is I'm nearer the hospice"... (it's on site)

Well I suspect you've had the tears, now I'd like to give you a smile.... We've wanted to do this for a while but well stuff gets in the way doesn't it...?

When I had the two stair lifts put in Julie said "We'll have to do some pictures for the blog, Alton Towers style" When Emma and the little legs came over to visit Julie and pick up June, well they had some fun but this was the day Julie was getting progressively worse and her late in the day visit to the loo was the start of events that ended in the ambulance arriving, but after the kids went well she got on the stair lift and despite not feeling well on the way to the loo wanted to get involved in the fun of it all... Bless her you can see how poorly she looks but this is Julie, she won't give in not to coin another friend's Cancer Battle campaign called 'NOT ONE INCH'...  Here are a few pictures, from the family visit and Julie's Cousin Half marathon Runner & Clatterbridge Supporter Maria. (Colouring Courtesy of Abbie, Chloe & Olivia)