Scary Territory

It’s the 23^rd October 2013 and it’s the first day of my life without the ‘crutch’ of Chemotherapy and radiotherapy, I’m truly scared.  I’ve had other symptoms they vary from mild to relatively severe; I’m getting tingling in my gums, my lips, my left arm and both my feet. Andy read up on this and a dear friend who had another type of cancer had also experienced some of this, everything indicated a condition called peripheral neuropathy but when we spoke to my oncology team they were adamant that Temodal, my Chemotherapy drug didn’t cause peripheral neuropathy…  they were as puzzled as myself…..  Dr Haylock said he’d refer me to a Neurologist who specialised in Epilepsy! I was on an anti-epilepsy drug called Keppra now infamously named ‘fuzzy drug’  lol there is a fine line between seizures and epilepsy, I am certain I do not have epilepsy. I hoped when the appointment occurred I would get clarity. I was also having vision problems; I wasn’t sure if it was surgical damage or if it was the drugs, steroids can change the pressure in your eyes. We discussed it with Dr Haylock, he suggested seeing an optician for an eye test and not in a malicious way said “Don’t spend a lot of money on new specs though” there are several ways of interpreting this advice…. You might find this bizarre or hilarious but I’ve previously shared my fear of the dark, I’m as bad without my glasses almost as blind as the proverbial bat. I said to Andy, you must promise me that when I’m due to be cremated you’ll make sure I have my glasses with me, I need to see where I’m going.. It’s daft isn’t it how we think at times but I will have my glasses with me. Andy did a bit of research, certain things cannot be included with you when it comes to cremation, metal for example.. hmmm all my glasses are metal, my next pair will be plastic hee hee..

 Around the same time Andy enquired should we be considering hospice provision, to my relief Dr Haylock said he felt it was way too soon to consider hospices! It looks like I’ll get Christmas with my children and grandchildren, this makes me obviously very happy, my next goal after that is to be here in February for the birth of our first grandson. Its no fun living your life in small chunks, it is somewhat a relief though when I meet a goal.

Life though as scary as all this is still has to continue, we travelled over to Grimsby the first weekend of November, we were booked in to our second home The Premier Inn, more expense but it’s easier for us to travel over than for the kids to have to travel to us, it does get to Andy at times as supportive as he is, he often ironically says, “Normally when someone is ill people come to visit the patient, us/you as the patient seem to be doing most of the visiting.” At times I feel torn, I understand Andy’s point and I know it’s his wallet that is constantly hit, a tank of fuel, two nights in a hotel, it all adds up, on the other hand the kids work most weekends and well I can remember bringing up my two on my own and how difficult it was to make arrangements and the costs involved. I comfort myself by telling Andy that I’d not see my parents if we didn’t come over, Dad has failing eyesight , Mum is in the onset of Alzheimer’s there is no way they can travel to us. At times I want to scream at the unfairness of this and at times I’m feeling I am a burden to everyone, Andy assures me I’m not but I cannot help how it makes me feel.

Later in the month I saw Dr Haylock and he reviewed a recent scan, all was looking ok, my blood results were looking better my neutrophils had recovered, I’d be starting a six month course of Chemotherapy, no radiotherapy this time, it looked like it would start on December 23^rd!

 Merry Xmas to me uh? At least I knew part of my comfort blanket would be back soon, I continue to remain scared, very scared.

I visit Jeanette, I need something doing with my hair, I’d previously ditched the wigs, there wasn’t much to work with especially around my treatment area and around my surgery scar, this truly depresses me, Jen continues to try and make it look respectable for me.

The last weekend of November and we are back in Grimsby, back at the Premier Inn, back to feeling guilty but Andy much as he has his gripe is adamant that I will get as much time as reasonably possible with the kids, Dad & Mum and friends in Grimsby.

Xena & Our Grand Daughters

I’m keeping busy with my girly friends too, despite all of my symptoms and tiredness I’m refusing to give in to the beast. A friend I’ve not mentioned yet, Xena and I are desperate for a catchup .. coffee and cake are calling..  We always have a giggle, if you could bottle Xena and sell her she’d be the perfect tonic for positivity and the bottle contents would be bubbly, she’s a rock to me, no matter my mood before we meet, I always leave Xena feeling on a high.

Friday 20^th December and I’m at Clatterbridge to see Dr Haylock, I’m starting my six months of Chemotherapy from tomorrow morning. My first dosage with my Radiotherapy was 130mg, you’ll recall from previous blogs that this should have increased but it never did due to the very low neutrophils level. This time my dosage was 250mg, seems we are about to seriously take on ‘Mr GBM IV’. I was again prescribed anti-sickness pills, I hadn’t taken the previous ones, I hadn’t felt sick, this time I was told I had to take them, this dosage was going to be tough on my stomach and so I took them too. I’m still taking fuzzy drug, steroids, my rheumatoid arthritis drugs, painkillers, I’m sure I rattle and slosh as I walk with the combination of tablets and liquid medicines. Our local pharmacy delivers them by the carrier bag full! I’ve got alarms set on my phone as they all get taken at different times, my life is run around a regime of drugs and food!!!  Food to be consumed before some of the drugs…

Xmas eve and I’ve spent the day with two friends in Warrington, I can’t name them in person for we are ‘secret agents’ hehe, we amuse ourselves talking in code and we have agent like names, I’m Purple Fox,  I can only tell you their agent’s names or I’d have to kill you hahaha. Blue Eagle & Red Cow kept me amused all day, its daft stuff, we have great fun and it makes my days more enjoyable. We’ve even nicknamed our husbands, Andy is ‘HEE’ (Hairy Evil Enemy) they all end ‘Evil Enemy’, well they're men aren’t they hehe.

Anyway Andy gets to leave work slightly earlier on Xmas Eve and he collected me from the Secret Agents in Warrington and next stop was Grimsby and the Premier Inn again. The car is loaded up with presents for the children and grandchildren; I got to feel Vicky’s bump, this is the best Xmas present ever.  It’s a wonderful time of year and I genuinely never thought I’d see these days, I’m going to take in every moment, the only down side is no matter where I am it’s still Chemotherapy time.

We came back from Grimsby as we had plans, a dear Friend who lives in Spain, Janice, scouse through and through was over for Xmas with her family and was celebrating her 50th Birthday with a party and we were invited, we had an amazing night. I met Janice through Andy's work and travelling to Europe, Andy had to go to exhibitions and conferences, the expression work hard play hard springs to mind and a small group of Andy's business associates became good friends over the years, Janice, Catia from Italy (Who threw an amazing birthday party  in 2012, Casper from The Netherlands,

Catia & Janice

Debbie & Mandy

Kristin from Norway but she lived in Greece when we met, and two true Liverpudlians, Mandy & Debbie. True mates, they all came to our wedding. Anyway Casper was staying with us, from a chance meeting in Lanzarote seven years ago a friendship so solid has developed. Its an unwritten rule that when in the UK Casper and sometimes when accompanied by his lovely partner Annelies always stay with us. Its hilarious when he arrives and I'm told to "assume the position Mrs Shute" hee hee. Casper is over seven feet tall so I have to go up three steps on our stairs so we can hug! Hilarious but when together Andy & Casper they look like Danny Devito & Arnold Schwarzenegger in Twins. see for yourself..

For now I’m as content as I can be, I’d rather not be dying but I cannot change that, I find comfort in knowing  I’m going to make 2014, I just hope I can make February, I have to meet my grandson!

If I was writing this in real time I’d be wishing you all a happy 2014, mine is full of trepidation.

A few thank you’s as always, this time it’s Xena and the secret agents. Also Janice, Catia, Mandy, Debbie, Casper 'lies & Kristin.

Today’s blog is dedicated to a very special man, although no ‘legal link’ Andy’s mum had a very special man in her life, Henry, he was the perfect gentleman, a great cook and baker, he’d only share his Xmas cake with one person, me! hehe.  Andy had known Henry over 55 years, it was a great comfort to Andy that he became close friends with his Mum over the years after his father passed away, in many aspects Andy considered Henry his Step Father. It was with great sadness that we received a call last Sunday from Andy’s Mum, Henry had suffered a heart attack and never recovered. RIP Henry, a very special friend & Gentleman.