I walked
into the Walton Centre with the aid of Andy & my stroller and we waited
patiently for Alison. She was shortly with us, I had butterflies in my tummy,
this is going to hurt and I worry about pain setting off a seizure, I am
petrified of these now. Alison is lovely, we sat down in her office and
discussed how I was and how I was getting on, I had a bit of a meltdown, I feel
so low and so useless now, the realisation of my weakness, I cannot even safely
lift the kettle, I can’t cook which was a passion of mine, I feel so down about
all this. Alison and Andy reassured me, Alison reminding me that barely a week
ago I’d had serious Brain Surgery and that my recovery takes time, I know this
but it doesn’t make it any easier, I am not fooling myself, I know I’m not
going to get back to normal now… I eventually compose myself and apologise for
crying, everyone is so kind to me. We’d also discussed my recent seizure;
Alison went and fetched one of the registrars who decided I needed to increase
my dose of Keppra (Fuzzy drug) from 1,000mg to 1,250mg twice a day. It comes
with mixed blessings fuzzy drug, yes it’s meant to control seizures but it also
makes me feel tired shortly after I take it.
Now it was
time to have my stitches removed, Alison had a colleague to help her by shining
a torch on to the stitches so she could see them properly. They have a thing
called a stitch cutter; it’s like a thin Stanley knife/Craft blade with a curve
on the end. Either the stitches were thick or the blade wasn’t that sharp for
Alison was struggling to cut through them and every pull had me wincing.
Eventually Alison took to using surgical scissors and whilst it hurt a little
as she slid the stitches out within 20 minutes I was stitch free. Despite there
still being some dried blood on my wound I can’t wash my head for 48 hours,
note I said head for my hair is thinner than ever and my wound area, well you
can see for yourself… Before we left Andy had done his usual and late the night
before picked up four dozen Krispy Kreme donuts, he gave a dozen to Alison for
her and her colleagues, the other three dozen were for Cairns Ward staff, I/we
needed them to know how much we appreciated the care they showed me over ten
days. Ha, it’s amazing how many Nurses are on diets (allegedly) hehe.
I made it
into reception with my stroller but I was shaky, Andy is quite perceptive (for
a man ha!) and he had me sit down whilst he took my stroller to the car and
came back with my wheel chair so we could head up to the ward. Bless them they
appeared short staffed, (Politicians, please note! We need more Nurses in our
hospital wards!) We didn’t stay more than a minute, a card and donuts left and
we waved goodbye.
By now I am
as the Irish say (Andy is of Irish stock) ‘famished’, starving to you and me
lol so despite the very windy day we headed to Crosby Beach, I wanted my fish
finger sandwich so badly I could taste it. We got down there and disaster! No
burger/butty van just the ice cream man! (Is he crackers its sodding freezing!)
Disgruntled we drove over to the south side of the Mersey and were back at New
Brighton, no fish finger sandwich here but having seen Andy’s recent pie and
chips… Pie and chips it is (not my usual diet), t’was scrummy!
Andy took
Wednesday off too as we had no Julie sitter for today, so we could chill out
together, he’s amazing in how he looks after me but bless him he’s so tired. As
a result in between meals he slept most of the day away, he needs to recharge
his batteries, neither of us get a full night’s sleep for invariably I need the
loo in the night and I need Andy’s assistance to get me up and to walk with me
to the stair lift.
Thursday
Andy’s back to work and one of the Secret Agents is with me for the day J as always we have fun, Secret Agent
‘Blue Eagle’ helps me put together our grandchildren’s Easter presents, we like
to be different than just giving them big chocolate eggs….
Good Friday
and we chill, we went out for a drive and I needed to buy more clothes, despite
my drastic drop in steroids recently the weight doesn’t fall off that quickly!
I need new shoes too, something more serviceable something I can put my foot
brace into, whilst I got clothes I remain ‘new shoeless’. Once home Andy packs
our suitcase for tomorrow, we are Grimsby bound, this is another journey I’m
not truly looking forwards to.
It’s Easter Saturday
morning and we are heading for Grimsby
to visit our family. I could have easily called this blog ‘We’re Sorry’….
Whilst the blog updates are always accurate when I was in hospital sadly we had
to omit some information from you until we had spoken to our family, we hope
you understand the need for this mild deception, reading on I hope you
understand why.
Whilst I have recovered well from my
surgical procedure it’s with great sadness we have to share with you that the
day after my surgery Mr Farah informed us he could not safely remove all of the
tumour for it had
grown over my motor cortex to the point that removing it would have left me left
side paralysed, he could only see the full extent once in theatre and had to
make a difficult judgement call as the operation proceeded. I have significant
left side weakness since the surgery but I still have mobility. Mr Farah is
apologetic and says my surgical options are sadly at an end and he’s handing me
back over to the Oncology team again now. Andy wasn’t prepared to wait for any
sort of communication delay knowing every minute counts now so he made a few
calls including to Dr Haylock’s secretary Coral, she knew of my case and agreed
I needed an appointment asap though the man himself is on holiday now for a
week; she had the bookings team slot me in for Dr Haylock’s next clinic, Thursday April 9th. I’m so
thankful Andy can make things happen, it is reassuring to know where we are.
You’ll
appreciate from previous blogs that Grade IV Glio Blastoma Multiforme is both
aggressive and incurable/terminal. The news that there is tumour left and that
my surgical options are now exhausted are a terrible blow, there is no fooling ourselves or any point in deceiving anyone on the
gravity of the situation now, so we need to tell my family.
We saw Emma,
Aaron & my dear Dad. This wasn’t a
fun experience, Emma & Aaron were both expecting the news especially as we
had asked to see them together, they were so mature about it, I am so proud of
them both. My dad bless him, telling him is a heart breaking experience for us
all. I love my Daddy, I don’t want to see him sad or teary but its natural,
damn you fluff!! The bad news delivered we can now ‘relax’ and have precious
family time.
It’s
Saturday evening & fluff (despite the increase in fuzzy drug) decided it was going to remind me it was with us and it's angry, very angry… I had a huge seizure in the
hotel corridor just as we are heading out to join my Brother Mick & his
wife Sue for dinner. It was so strong & it truly scared me so badly that I didn’t want
to go out now, I’d lost the use of my left hand and leg, it’s always comes back
before but I fear one day it won’t. Andy calmed me down and said I should not
allow fluff to hold me hostage and that we should still go for dinner,
reluctantly I agreed. We arrived at the restaurant late and I broke down in
tears as I apologised, I feel so useless, so helpless, I feel such a burden.
Sue hugged me and re-assured me I had nothing to apologise for. We sat down for
dinner, the restaurant was quiet it was all so relaxed and the bonus was my
hand and leg usage came back, not before I had to ask Andy to cut up my food
though, we had a great night.
Easter Sunday
& we did nothing but eat, we had a traditional Sunday lunch with Vicky,
Aaron and our grandchildren, Abbey, Millie & Evan and in the evening we
went for a long overdue curry with Bob, Emma, Bob’s sister Jenny and his mum
& dad who were also visiting. It was a great but calorie filled day!
Monday and
we had invited other friends & family in Grimsby to come visit us late
morning, I tire so much these days I cannot dash around like we used to. It was
lovely to see them all.
After our
friends had gone I was drained, I was tearful as they left, is this the last
time? We still hadn’t seen the twins & Olivia, we were planning to go to
their house but I worry about daft things these days, the width of corridors,
the proximity of a loo and I am not feeling 100%. Andy suggested we get Emma
& Bob to come to us, I agreed. Early afternoon I’m getting grandma hugs,
Olivia is curious to me being in a wheel chair and my scar, Andy explained I’d
been poorly and a doctor had been looking after me. The good thing with youngsters
is they soon move on to the next topic and this was her showing us her catwalk
walk and poses, she sure has model potential!
I’ve been
enjoying the show when from nowhere I felt the start of a seizure, Fluff is
really angry with me it seems. I quickly said to Andy & Emma, “get the kids
outside quick”, they didn’t need to see grandma like this. Emma took them
outside as the seizure kicked in, Bob stayed quietly on hand as Andy started to
help me with our singing routine, although in the hotel lounge thankfully no
one else was around, I am so conscious and need quiet at times like this. My
leg was going and my arm was thinking about flipping, I try to keep eye contact
with Andy but we can both see the arm rising. It’s like every nerve in my body
is carrying electricity, they are so painful. After around ten minutes the
seizure subsided and Bob fetched the kids back in so we could say our goodbyes.
I’ve cried after all of my goodbyes this weekend, I realise this could be the
last time I see any of them, I’m scared, very scared now.
I’m drained and this episode had delayed our trip
home by a couple of hours, we are going home but not alone, my amazing, truly
amazing best friend of over 34 years ‘woon’ June, one of my sister-in-laws from
my first marriage is coming with us to ‘Julie sit’ me until the end of April!
This is an incredible gesture on woon’s part, its taking her away from her
daughter and adorable grandson Charlie for a long time and her other half (Also
Andy!). We are both so grateful for this gesture. The one thing I can be
certain of the next few weeks despite the clouds of gloom overhead it will be fun
filled lol we are terrible together hehe, Andy beware!
Moving on to
Thursday 9th and I see Dr Haylock, I have to admit I am scared and I am now becoming
tired of the fight, I haven’t told Andy how scared or how tired. I am
questioning myself now as to whether I want to fight fluff any longer, I know
despite what everyone says (that I’m not), that I am a burden, we both have
disturbed sleepless nights, I cannot be left alone any longer, my slowness
concerns me in terms of my dignity in going to the loo, I’ve had no accidents
but I worry, showering now scares me, travelling the stair lift worries me,
Fluff has turned me in to a nervous & scared wreck. Whilst a lot of this is
obvious to Andy & to June other than Andy seeing my fear when my surgery
was first cancelled no one has picked up on how I am considering ending this
battle now. With no further treatment I know my time left will be short, life
expectancy for patients with an untreated GBM IV tumour is around 14 weeks, we
know fluff has been here for six, if I do give in it won’t be long to the end
of the suffering, I really cannot go on forever fighting, I’m sorry…
We, June,
Andy & I arrived at Walton, Alison came and gave me a hug, and said she’d
tell the boss ‘Dr Haylock’ we were here, we are first on.
I’m in my
wheelchair and we’re greeted by Dr Haylock, he has an amazing way about him in
terms of the Doctor and patient relationship. We chat generally about how I am
and how I am feeling post-surgery. He also, although I didn’t realise it, was
indirectly asking me if I wanted to continue with any treatment. Andy not
knowing how I was truly feeling spoke to Dr Haylock, “We have discussed where
we are now we are post-surgery, we fully understand the implications of the
tumour still being there but, in general Julie’s recovery is going well and she
feels strong enough to at least continue the fight”. I sometimes get lost in
conversations these days and didn’t realise the full extent of what was said.
Dr Haylock then went on to explain that my options were indeed limited, we
discussed the drug trials and although he needed to read up further on the
entry conditions he felt that as this was my third tumour and most trials take
place after the first’s removal, that I have Rheumatoid Arthritis (an auto immune
desease) and I have had ‘recent’ (My SRS) radio beam surgery AND I am still on
a high dose of steroids the odds are very much against me, Andy asked Dr
Haylock about Lomustine, the chemotherapy we had previously discussed. He
suggested this might be the best hope for me but again he would need to see if
I was well enough to have it. “If I can get blood tests done here today for
you, can you come and see me tomorrow morning at Clatterbridge I’ll have time
to check out your options, my appointments are full but I will see you at 10.00?”
Andy said, “We’ll be there”. As he filled in blood sample request forms Andy
asked me if I was happy with what we had just discussed. I answered “I’m not
sure, you know how these things sometimes confuse me, you can tell me later”,
Dr Haylock left the room with the blood forms. Andy chatted to me, “It looks
like you will be good for the Lomustine Chemotherapy hunny”, he kissed my
forehead, I looked at him and asked “So do you want me to carry on fighting
this?” His eyes welled up, for the first time it dawned on him that I’d had
enough; I’m too tired to fight now. As he cried he said “of course I want you
to fight this hunny” I touched the side of his face and he wiped his tears away
before Dr Haylock returned and then took us the short distance to the nurse’s
station to do my bloods. As Andy wheeled me past Dr Haylock’s room Andy just
confirmed we were done and that we would see him at 10.00 at Clatterbridge tomorrow.
We grabbed June
and headed to the Café for a Costa Coffee, I need my fix. As we sat there Andy
asked me to confirm the conversation that he and I had just had to June, I just
explained I didn’t think I could fight this any longer, “None of you truly know
what I am going through and living with”. June always a voice of reason added,
“Julie, you’re a brave lady, you’re stronger than you think, you have fought
illnesses in the past, you cannot give in to this yet”, Andy reiterated a
similar view as he held my hand but he also added “You have our full support
hunny, if we thought it was right for you to give up the fight we would tell
you but for now we feel you are recovering really well, you’re forgetting it’s
not been a month since your surgery, serious brain surgery and you are coping
and showing some improvement, ultimately you and you alone need to decide
though when enough is enough and we will support your decision, but please for
now consider what we’ve said”. I think a lot of it is I am scared and I know I
have deteriorated and I needed assurance from others, I told Andy as much. We
left with the conversation still ‘open’, I am still not decided..
Dr Haylock
added a new drug to assist ‘fuzzy drug’, its called Clobazam. I have to take it at night, I’ve read
the side effects which include you may stop breathing, I said to Andy about
this and I didn’t want to take it just in case… The odds against this are so
slim but I am scared all the same, this illness has knocked my confidence, I
took the tablet and lay down, the drug can also make you feel tired, apparently
not I though! Wide awake half the night.
Friday 10th April and Andy thinking
he was doing a good thing let me/us have a lie in, as I awoke the smart ass
said “I see you’re still breathing hunny”, bless him he cannot do right for wrong
right now. I panic that I am not up and downstairs to take my steroids at 08.00
with breakfast, today it is going to be nearer nine and this is freaking me out,
so much so I feel unwell. I feel I am being rushed even though I am not and I
am worrying we won’t be at Clatterbridge on time.
Well I had
my breakfast, cup of tea & drugs, and we made it to Clatterbridge dead on
time, As we booked in Andy waved at some newly found friends also on this same
journey, Andy had chatted on twitter and Facebook to them as they were reading
the blog and their Father was diagnosed with GBM IV last August. Andy knew they
would be here today and arranged for us to say hi. There is an instant warmth
and in a way a relief to meet others who understand up close our journeys. Bill
is an incredibly brave man, he has a loving family supporting him in wife
Eileen & Daughters Adele & Clare,
I won’t go into detail for it is their story not ours but to demonstrate again
how important it is for a family to look at all options and to challenge, Bill
was initially told by another team at a different hospital that his condition
was inoperable and his future would be short, a brave daughter challenged this
and asked for a second opinion, One of the Clatterbridge Team saw Bill and
agreed he would give it his best shot to remove the tumour, suffice to say 8
months on and well beyond the initial prognosis this family are united and are filled
with positivity, we all agree this helps keep the beast in its place, we take
our hats off to them and we hope their journey lasts at least as long as I have
been ‘fortunate’ to ‘enjoy’!
Soon we are
called in to see Dr Haylock, we’ve caught a glimpse of Helen and she is busy
with other patients, we swapped waves, today Dr Haylock has a nurse called Lisa
with him, she too is lovely. The conversation starts with, as thought I am not
going to qualify for any of the drug trials though I could be put back onto my
first chemo drug (Temodal (brand name)- Temozolomide (generic drug name) - same thing- pronounced TEMO- ZOLO-MIDE) again with the Sativex or, as my blood results were good he
could put me on to CCNU or Lomustine as it’s named. Andy again mentioned he had
little confidence in The Temodal/Sativex plan due to Temodal’s previous ‘failure’, Dr
Haylock concurred and said were the choice his he would opt for CCNU. Both
looked at me for a response, Dr Haylock unaware of our conversation of
yesterday, Andy holding his breath wondering what my response would be. “OK
let’s go with this one if you think it will help”. Andy as you would expect was
so thrilled. At that its explained its four capsules one each night for four
consecutive nights each month, that there are risks, the main one being my
blood count dropping and the risk of infection, it could also give me nose
bleeds and it will certainly make me tired, very tired. I had to sign a consent
form to start the treatment, I’d also need anti-sickness meds (Domperidone) and I would need
a scan shortly. Whilst I had a scan immediately after my operation we learned
there is no use in a scan in the next three weeks for it could show swelling as
opposed to the actual tumour and its site. We need a ‘benchmark scan though’
and I’ll be scanned regularly also monthly blood tests for the foreseeable
future. Andy asked Dr Haylock how long the Chemo could be taken for, we all
know this is an impossible situation to gauge, each patient is different and so
it wasn’t surprising the response was vague but it was said that he would
review things monthly but after two to three months would give us a better
idea. 3 months is way beyond where I would be in declining treatment, hopefully
It all goes to plan and I remain healthy enough to enjoy it, I’ll say to you
all now though if it gets too tough now I am likely to call it a day, I feel I have
reached a tipping point in my journey.
Special
thanks this blog to Alison (again), to the Management & Staff of the Humber
Royal Hotel in Grimsby who gave a lot of thought to their disabled resident guests
and for being prepared to invite feedback on how they could improve their
disabled guest’s stay. Special mention
to Woon, to Bill, Eileen, Adele & Clare for taking time out to say hi… To
all the friends and family we saw at the weekend, we’re so sorry for upsetting
you all.
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