This beast.. (Fluff) is relentless.

Well again, this isn’t going to be pretty, reach for the tissues…

You would think after recent events that Julie was overdue some respite from this onslaught , shame no one has been able to get that message through to the beast named fluff…

Wednesday 6^th May and the ward is suddenly on lockdown! There’s an outbreak of Norovirus, that horrible contagious bug that causes projectile vomiting and well let’s just not go there. Julie fortunately isn’t affected by it, there is a ‘deep clean crew’ and ‘infection control’ are on the ward but meanwhile NO VISITORS, even I am not going to be able to blag my way in iced lollies or no iced lollies. I’d not long spoken to dear friends Vince & Denise who wanted to come down Thursday which was fine one minute but given their journey is a couple of hours each way and not knowing if the ward would be open Thursday with this news landing I had to message back to postpone. I spoke to Julie and there is yet more bad news; her platelets are still low a decision will be made to tomorrow on the next stage.

Thursday & Julie had asked me to get some provisions in for her, peanut butter (yayy her appetite is back – kind of), she wanted a new nightie and I was given my instructions to leave the goodies with one of the nurses at the ward door as they’re on lockdown still. Luckily by the time I got in the lockdown was over. On the way to the ward I spoke to one of the Nurses, Julie had suffered a seizure not a huge one but a seizure all the same, she was wiped out bless her, add to this she had been told that the blood clot busting drug treatment (Clexane) was to be withdrawn, it and apparently the chemotherapy has hit her blood platelets hard, too hard. This meant tomorrow’s planned second course of Chemotherapy was definitely off; there is a two week window that this current chemotherapy can cover, so a six week period in total. I’ve no idea yet what happens in six weeks one day, I’ll find out but for now we have to remain positive that Julie’s platelets will recover. There is also the fact that the clot is not completely gone and is remaining untreated, it’s probably all but gone given how thin her blood now is, but without more scans we won’t know, the only credible alternative drug to ‘clot bust’ is warfarin and we are informed this can itself cause blood clots on the brain! Nightmare! It’s been mooted that there is an option to insert filters into veins in her legs to catch any clots but that sounds like more surgery to me, surely the love of my life has gone through enough now?

Friday 8^th of May is meant to be Chemotherapy day , I called Clatterbridge outpatients at 09.00 to let them know Julie was in Arrowe Park  and her platelets were low and so she wouldn’t be over, I asked them to liaise with APH re the chemotherapy.  

I arrived on the ward late today as in just before seven, I’d brought some things in for Julie,  when I got to the ward she was fast asleep, I left her goodies on her table and stood guard by her bed. After being there about 40 minutes one of the Nurses, Kim, spotted me; she said hi and asked did I need to speak to Aga, Julie’s senior Nurse for the day. Much as I like the team on here I’ve no desire to eat into their precious time unnecessarily, they’re constantly busy and anyway, I (think) I’m up to speed, ha! What do I know?… Around 7.45 I leave the bay Julie is in, she’s still in a deep sleep, she’ll know I’ve been in…. As I passed Aga doing her paperwork I said hi and she spun in her chair to talk to me. “Julie had a big seizure today” Apparently it was lengthy, they were transferring her from her bed to a commode by hoist (Julie is still having left foot issues, she cannot lift it, she can stand on it though) as she was on the commode still in the hoist harness it seems she had a big seizure”  whilst her arm didn’t completely turn up her whole left side was in seizure. One of the Nurses, Elizabeth comforted Julie and although by her admittance too shy to burst into song she did stroke Julie’s hand & talk to her softly, she said she tried a bit of twinkle twinkle little star and the twelve days of Xmas but it wasn’t happening. Eventually the seizure ended, it sounds like it was over 15 minutes ‘a new record’, sadly it left Julie distraught and agitated she was still in the winch on the commode. A Doctor was called, hastily a cannula was inserted into Julie’s right arm and a dose of the sedative Lorazepam was injected, Julie remembers nothing after this, she had been sedated,

No wonder she was in such a deep sleep. Fluff is it seems furious. I left the ward headed to my car and sobbed, this disease is stretching all of my emotions; I drove to the mouth of the Mersey to watch another Sunset and to think. I’m struggling with going home these days, it doesn’t seem like home without foxy, I’m contemplating what to do with the place when things reach their natural conclusion, alone I don’t need a 17 roomed house on four floors to rattle around in on my own with memories that will haunt me, It would make sense to live closer to my office and reduce my £5,000+ a year diesel bill plus reduce my travelling time and I’ll be marginally nearer Emma, Bob, Aaron Vicky all the grandkids, Julie's parents and my mum too.

 
 
 
 
 
 
 
 
 
 

Thinking time over, my tears drying, the sun has set and I’m heading to ‘Shute Manor’, (for those that haven’t read all the blogs it’s no Manor, it’s a rather large semi-detached Victorian property on four floors, Julie named it Shute Manor and brought me a plaque for the wall..). On getting home I head to the laundry room, put a load of washing on and headed to our bed. I’m thinking of Julie, will she still be sedated in the morning, has any damage been done? Every day there is more stress, more fears, more wondering how long now? How much more can Julie and her body take? How much more can I take? A lot of questions ultimately though I know I have to dig in, people are kind and say ‘take care of yourself’ I do to the best of my abilities but the reality is there is no ‘plan B’, I have to do what I have to do… Tomorrow is another day on the rollercoaster!

Saturday, I woke early & checked my emails, read some kind messages on Facebook & twitter and shared the latest sad news with close friends, I checked the blog and see we are close to 30,000 views (thanks to each and every one of you)! I took a chance and called Julie, I was relieved she answered, bless her she sounded tired and she was very, very slightly agitated, I told her I’d see her soon. Unusually I drifted back into sleep, I’m exhausted, more than once recently people have said “How do you do it?” It seems your body knows you have to be strong and finds energy reserves you never knew you had & I’ve always been a bugger for power napping, not a ‘skill’ everyone has but I do.

A few chores done and I head into the hospital, Julie is lightly dozing but my moving a chair wakes her, I hold her hand and kiss her, I’m so pleased to see her but she looks poorly. We spent the day chatting, holding hands, Julie grabbed a small nap, she needed a commode again, this relatively easy sounding task now takes around forty minutes and is filled with trepidation after the seizure experience, we often fail to recognise how impacting these things can be… I used this interlude to shoot down to the cafeteria for a sandwich and drink, more thinking time, my head never empties these days. ..

I headed back to the ward and its close to seven, visiting is almost over, Julie is back in bed and we’re holding hands, I noticed a change in Julie’s look, to a look I’ve seen before, my initial thought was she’s going to tell me she’s reached a decision and enough is enough, who could blame her after the huge seizure of the night before? I was not prepared for what came. “This is so unfair, why me? Why can’t things be like they used to be?” As the words ebbed away tears were running down Julie’s cheeks, I quickly grabbed the curtains for around the bed, this hit me like a sledge hammer, already my own tears were running down my face, I was sobbing, curtains closed I broke the cardinal hospital rule, I dropped the cot side and sat on the bed and hugged my darling wife, I had no answers for her just hugs as we wept. We were interrupted by one of the Nurses checking Julie was alright behind the curtains, he soon realised we were both crying and retreated to leave us to our tears. My oh so strong battling wife’s armour had been breached, I want to hold her forever and make this go away, If only I could…