Time To Be Grateful

It’s January 1^st 2014 and I’ve hit another target, happy New Year world!

Although I’m tired and the chemotherapy is definitely tiring me out I try to restrict myself to a nanny nap mid-afternoon but I know I nod off on the sofa of an evening with Andy besides me.

January is a busy month Birthday wise and up until now I’ve beavered away making my own greetings cards all decoupage style, as in I spend hours cutting out layers and layers of the same design and then with special glue build them up on top of each other to give a three D effect. They take ages, people have said to me over the years “You should set up a shop & sell these”. The problem is they are so labour intensive it probably takes four to five hours from the start of making a card until it’s ready to put into the envelope. I even print out the verses and the message inside. Never mind the cost of the materials and printing to break even on these you’d probably need to charge around £30 a card!  hehe like that’s ever going to happen! I do them for the love of it not for the money, I know the emotional value they bring to the receiver and it helps fill my days, I’ve been making them for years, it’s something my dear Mother in law Maureen and I have in common along with both being sticklers for detail and perfection. I am finding it more tricky to make them these days as I explained in the last blog I get tingling in my arms and fingers, as I concentrate I do shake a little, but I won’t be beaten.

Gemma
 

Harrod The Gardener

Birthday’s in January include my Brother Howard or as I’ve named him the last year ‘Harrod the gardener’ lol… He was here on one occasion when Aaron my son was here and they’re so darn alike I was calling Aaron Howard and Howard Aaron, talk about confused dot com! So suddenly Howard became Harrod, sounded posh so he was suddenly Harrod the Gardener. You don’t have to be mad to live in my head but it sure helps lol. Back to the Birthday list, my first husband George, we remain on great terms his family (especially Woon) have always welcomed me and Andy. My dear dear friend who I am still to tell you all about Letty Spoghetti, yes I’m off again lol. Vicky, Aaron’s very pregnant partner, My brother Andy, daughter’s best friend Beatles mad Gemma, my Mum and Woon’s grandson Charlie! So it’s fair to say I’m keeping busy and in the words of a dear friend and comedian Jimmy Cricket “There’s more”. I’d say to anyone in my shoes, never put off until tomorrow what you can do today. One day I know tomorrow will never come so I’m living for the moment as exhausting as that can be.

Mum & Dad

Letty

 

Vicky B'day gal & Mum

 

The second week of January and yes we are back in Grimsby at the Premier Inn, I can hear Andy muttering under his breath as I type this, “You’re ill but we are visiting”… I have no idea how to break this cycle, I have to be thankful that despite his cursing I know Andy will do all he can to give me time with my family.

The next weekend well ‘Mr Lucky’ had struck again! Andy won another competition on ‘Preston’s 97.4 Rock FM’, this time it was a one night stay at The Marriott Hotel in Preston, Dinner, Bed and Breakfast and two Massages included!

I love massages it’s my idea of heaven, I had them regularly before I was taken ill. Now I had a problem, a lot of beauty treatment companies won’t give you a massage if you have cancer, I think, they think, that the intense but soothing strokes may aggravate cells or cause damage. I spoke to one of Dr Haylock’s registrars about it, she was quite laid back and her view was “don’t tell them it will be fine”. I couldn’t do that, I can hardly lie even if I was prepared to with my head looking like a classic cancer patient, plus it would not be fair on the masseuses. A couple of weeks later still well in advance of the prize I saw Dr Haylock himself, I explained everything, he was fine about it all and had a letter prepared for me to explain I was fit enough for a massage. Yayy! Result!  I also mentioned to Dr Haylock that I was about to become a grandma again, the look back was like “You mistake me” (for someone who cares)… I quickly added, “will I be ok to hold and touch the baby, being on Chemotherapy?” Thankfully the man from Clatterbridge, he say yes! Eeek!

We checked in to the hotel and headed to the beauty suite. Andy isn’t into massages so we asked could I get two treatments and they happily obliged. I filled in their questionnaire and gave them my letter from Dr Haylock. To me honesty is always the best policy. Dinner that night was a posh affair; it was like having your own butler serve you. We had a most romantic evening, thank you Rock FM and Hywel and Jamie.

Towards the end of the month Jooie was back to lend me moral support and her friendship. She lives near Southampton, she visits her family in Grimsby and she goes home via Merseyside to fit me in… a true friend is Jooie.

So I made It through January and it’s February, NOW I am truly excited, my first Grandson is due this month! We’re having a quiet month Andy had caught a flu like bug, it poleaxed him for 48 hours and he lost almost a stone lol not that he couldn’t afford to lose it hehe. Because I was on my chemotherapy Andy took up temporary residence in ‘the red room’ more of my quirkiness, all of our bedrooms have names. We didn’t want to risk me catching ‘germans’ as the twins named ‘germs’ lol. I knew Andy was ill, I don’t think he’s had more than a handful of days off sick in all the years I’ve known him, well except when he shattered three vertebrae falling off a ladder and ending up in hospital for a couple of months, even then he was working from his hospital bed!

I had a day out with Jeanette, she’s fun and we can chat heart to heart.

The 20^th and I’m back at Clatterbridge for another scan, I feel ok, I’m just so tired.

I’ve had my scan now where is this grandson of mine!! Evan Arthur Bartlett arrived Into this world on February 23^rd at one minute past midnight! Weighing in at 8lbs 12 ½ ounces and he’s 56cms long!   I am truly excited I want to be there! I have to be patient.

The next Friday we are back in Grimsby and the Premier Inn. Andy has bitten his tongue he’s excited to meet Evan too.

I’ve hit another vital goal, I get to meet my grandson, I cry with joy and relief I am sooo grateful for this weekend; we now have five granddaughters and one grandson!

 

I cannot describe the feeling of joy as Vicky placed Evan in my arms, I just want to ‘squish him’ & nibble him & smell him… nothing smells so scrummy and sweet. I don’t want to but if I died today I’d have been content.

It’s time to be grateful….

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.

My Final Radiotherapy & Chemotherapy session approaches

It’s been a busy month treatment wise and socially. As news of my condition and treatment has rippled out the ‘troops’ have come running. Friendship is a funny thing, we meet people through our lives and some of these people become friends for life, you don’t have to see each other on a regular basis, you don’t have to speak on a regular basis, it’s bizarre but with true friends and family when you do meet up it’s like you’ve never been apart. I lost touch with a lot of people when I left Grimsby, although I’m writing this current blog just over a year after the events it’s fair to add that in the last year I’ve caught up with a lot of those old friends. What is strange though is in some instances some that I classed as close friends have drifted away from me. I’ve tried to stay in contact but sadly some have not felt able to stay in touch, I have to respect everyone’s views and not everyone can handle or accept a dear friend is dying, I add on here if you are asking yourself “Is Julie talking about me?” I probably am and I’d add it’s never too late to rekindle our friendship, well, actually in this instance sadly one day it will be too late…. This doesn’t apply just to me; I imagine all of us even those lucky ones in great health will have lost contact, its times & situations like this that make you think should I reach out one more time?

Anyway it’s been a busy month & I love seeing people, it also gives Andy some added peace of mind knowing I’m not ‘home alone’, I know he worries, I know he feels guilty going to work each day and he’d rather be here than in his office but normality must remain in our lives and although I’m terminally ill I am not an invalid, I’m not bed-ridden, I am fortunate I can still walk, talk (jibber jabber lots heehee), I can find humour, I can cook, clean and I can enjoy time with all my girly friends, this month especially Adele & Julie or as she became many years ago Jooie. Another weird coincidence to share before we move on. I met Julie in Grimsby, we worked together in a care home. We became great friends, we had both moved on but we stayed in contact. When I started going out with Andy, Jooie  lived in South Manchester with a guy who came from.. Birkenhead, where my Andy was living! It gets spookier for they moved to Birkenhead and by then I was living here too. You’d think that was enough of weird coincidences but whilst Jooie’s relationship didn’t work out she is now settled with a great guy called…… Andy! Its fun when we get together ha.

Anyway back to the blog, its brilliant that ‘my girls’ are here, it’s been tough going through the treatment physically and mentally, It’s draining in all aspects, I’m still very scared, I know this round of treatment is to destroy any traces of the tumour and the invisible GBM cells, my diagnosis has not changed I am dying, It’s September and I don’t know if I’ll get a final Christmas with my Children, Our special grand children, or If I’ll make the birth of our first grandson in February, and back to Xmas friends, my Mum & Dad and Andy’s Mother & partner Henry. So to be able to share my concerns and also to try and forget it all even for a few hours with Jooie and Adele are precious and invaluable moments, we just talk, often nonsense and often for hours but it helps immensely.

Emma, Bob & the kids came over for a weekend too, in view of what I said in the last paragraph, this is comforting but with it comes the tears as they leave, the grandkids are just excited to see grandma and they know we should see them in a few weeks so just happy waves from the kids but Emma is crying, I feel so bad for being the cause of her upset, I know I cannot help what is happening but it still makes me feel guilty. I’m quiet after they’ve gone and I make my excuses to head upstairs alone on the pretext of stripping all the beds, Andy offers to help but I want to be alone where I can shed a tear and not upset Andy.

Andy is determined to keep our lives ‘normal’ though at times it seems so hectic that we are in overdrive to fit in as much as possible, it again is tiring on top of the treatment but I’m grateful we are so busy, though it must be painful on Andy’s wallet at time, I worry about that too, god I’m turning in to a real worrier!

We were out for Dinner with some lovely friends at the end of September, they wanted to treat us to a meal in a great restaurant in Chester, we hadn’t seen them in an age and I was so looking forwards to it, Andy booked us into a room in the Crowne Plaza and with some loyalty points upgraded us to an executive room.  It was good and catching up with true friends in a great restaurant, the hours just rolled by. Back in the hotel my head hit the comfy pillows and I’m tired, tired but feeling happy & a very lucky girl… Still I worry, we’ve had four consecutive busy weekends, three at home one away and it’s all money.

October, my treatment continued, my routines continue and the hectic social life  continues. Chloe has taken to Go Kart racing, I’m talking serious stuff even at eight years old she’s tearing around the same tracks Louis Hamilton & Nigel Mansell raced around, she’s the only girl in the 12-15 competitors that race monthly and she has ‘No Fear’. It turned out in October Chloe was racing at a circuit in the Lake District, I love the Lake District, so much so I’ve decided I want my ashes scattering up there, it’s beautiful, its tranquillity itself, I want a spot that overlooks a lake somewhere fertile where I can perhaps live on through fertilising a tree, I want somewhere the kids and Andy can come and reflect on our happy memories, perhaps have a picnic and play games with the children to remember me and the memories we’ve built.

 

 

With Woon

Andy felt this was too good an opportunity to miss for family time even though we’d been to the lakes with Woon just before all my troubles started, she loved it too. Anyway Andy called me from work, “I’ve found a cottage close to Rowrah, it sleeps up to 12, I’ve booked it.” This  pre-empted a nagging thought in the back of my mind, “The invitation extends to Bob’s Dad & Mum too”.  I felt a weight had been lifted off my shoulders, Andy & Bob’s Mum had a huge row a couple of years ago whilst we visited Grimsby, Its all water under the bridge now and I believe this weekend mended  fences.

We had a great weekend, the cottage was huge, the only thing Andy insisted on was we had the master bedroom, It wasn’t the biggest. Chloe won a trophy as the most improved driver of the year. I said earlier she was the only female driver in this championship but there are other ambitious young ladies wanting to get In to F1 too, we later found out Chloe was the fastest female eight year old in the country. More on Chloe & her karting in future blogs.

The Conifer

I have to share this with you it’s absolutely hilarious even I was crying tears of laughter. Parking was tight outside the cottage but immediately cross the road was a village triangle with the local infants school in it, parking there was no problem, the racetrack venue wasn’t licenced to sell alcohol but we brought some with us as the awards ceremony was followed by a disco for the racers. We were back at the cottage early and all piled in to the warmth and us girls slipped in to our PJ’s. Andy suddenly realised he’d left the drinks in the boot of the car, so off he went to get them. I’ll let Andy tell you this bit teehee. It was dark outside the cottage and at the end of the short path was a small curb and a large conifer tree. I’d been warning everyone all weekend to “mind that curb”, it was only small a couple of inches at most. In my rush to get across to the car, yes I forgot the curb and my ankle rolled under me, I’m sure I heard something snap I tried to put my weight on it but god it hurt, It had knocked the breath out of me, I didn’t know if I should laugh or cry I grabbed for the conifer, I’d become a tree hugger! After a minute or so I slowly tried to put my (then) eighteen stone weight on it and it hurt, I was crying and laughing, I was panting like a woman in labour. All sorts of things we going through my mind as I hugged my new friend the Conifer, would I be able to drive the car home, it was my left foot and my car is manual, I’m also thinking about Julie, she’s enough to contend with without me at home and then there was the impact it could have on work. God it never rains less it pours! I decided to see if I could make the 15 feet to the car, I made it but it was probably the hardest walk of my life. I grabbed the carrier bags of beers and soft drinks, and still struggling for breath I hobbled and hopped to the front door cursing the curb as I passed it.

I knocked on the front door, I was seriously in distress from this still, I knocked the door and Emma opened it, bless her she thought I was having an Asthma attack, she called Julie. By now I was hobbling into the lounge everyone wanting to know what was wrong, I sat down and I’m trying to explain through my weird breathing  what happened, by the time I got to the tree hugging Julie was having hysterics as was everyone else. I eventually got my boot and sock off and my ankle was huge and purple, man what had I done? Some frozen peas we’d brought came out of the freezer.

Mrs Jibber Jabber is back to continue…..

The others all left on Sunday, we had the cottage until Monday so Andy and I rested for the day, we’d arranged to meet Vince & Denise. Vince is Andy’s best friend, they met through work many years ago and was often invited to family orientated functions and events, when I came along I was instantly and warmly welcomed in to ‘Family Armitage & Everson’, I doubt there is a nicer family in the UK, If there is I’ve never come across them. Vince was Andy’s only choice for his Best Man when we married; we’ve spent a lot of time together over the years including doing a road trip from San Fransisco to LA and then on to Las Vegas, we are so at home in each other’s company. Vince hadn’t been in the best of health for some time but also a dogged fighter. We arranged to meet on our way back from Rowrah, we met at Penrith and caught up over coffee, well several coffees, I think we could have stayed in the warmness all day chatting but early afternoon we went our separate ways, I had to go and have my treatment, we promised we’d see each other soon but I still didn’t know if I’d be able to fulfil these promises. There is always a tinge of sadness in me and I suppose I give that little bit harder hug these days…. Andy and his sore swollen ankle ‘gingerly’ drove us home.

On the 22^nd October it was my last Radiotherapy & Chemotherapy treatment, this was a scary day, my comfort blanket was going;  again my head was a whirl, what happens now? Is this the end of the line? We spoke to Helen and she assured, you’ll see Dr Haylock next week for a review but standard procedure now is your body needs to rest and settle down, in two months you will start another course of chemotherapy. My ongoing fears always are is this thing growing back whilst there is no treatment to fight it, how would I know? I’m very much back in limbo, I remain scared, Andy is trying to keep me positive I’m trying to be but deep down we aren’t fooling each other, we are both thinking the same things….

If there is a learning experience in this it is that my journey has been much improved by having friends to share my concerns with but also to laugh with (and in Andy’s tree hugging to laugh at). Your surroundings are irrelevant it’s the people you spend your time with that count most and remember if some friends struggle with this try & stay in touch but remain conscious to they may not be able to cope with your situation, none of us are perfect & remember life is too short to hold grudges.

Time for a few thank you’s .

To all my visitors especially Adele, Jooie, The kids & Grand kids, Andy & Sharon (yes ANOTHER ANDY), Vince & Denise & my frog prince teehee..

 

PS If you click on any of the pics its enlarges them.

 

 

 

Life MUST go on.

My treatment is going to plan apparently except for those tricky Neutrophils messing things about. I’ve had no sickness at all I should consider myself ‘lucky’….

Talking of being ‘lucky’, Andy won a long weekend break in a charity auction with

 
 Rock FM one of the Northwest’s better radio stations. The prize was a Canal Boat Cruise but we only had a tight timeframe to take it in, would I be able to go now I was on my treatment? Would I be fit enough? We spoke to Dr Haylock and he was ok about it as long as we weren’t too far away.  We ran some dates by John & Lesley, the lovely friendly owners of Canal Boat Cruises of Riley Green, based on the Leeds Liverpool Canal. I then needed to speak to the radiography team for an early appointment, the Friday was perfect but being there early on the Monday morning would mean us coming home on the Sunday. The team were so accommodating and arranged a 5pm session on the Monday afternoon.

I was excited now, we invited my Son Aaron and his partner Vicky on to the trip with us, we’ve never spent quality time together so this was going to be precious times for us all.

A spooky Coincidence

The canal Boat trip was an amazing experience travelling through the Lancashire countryside with just the soft comforting ‘chugging’ sound of the boat’s motor was so relaxing, the boat had central heating, in fact all the ‘mod cons’ you could possibly want and a far more traditional feature in a cosy log fire, I was feeling the cold more these days and I’ve always loved coal & log fires, I’m content as I could possibly be right now, content but tired.

I am feeling tired, I fight it but I’ve started needing the occasional “nanny nap”, I still get up with Andy and wave him off to work around seven a.m… I take after my dad as an early riser never been one to lie in bed, there was always something for ‘Mrs Bouquet’ to do. With this in mind I had arranged for my daily visits to Clatterbridge to be as early as possible, I’d normally be in, treated and back home before ten a.m.

 I say home, sometimes I’d get the bus into Birkenhead or I’d get a taxi in to the close by quaint village of Oxton. Birkenhead is a shipyard town, home of the famous Cammel Laird Shipyard, it would be fair to say the town has suffered over the years and has more than its fair share of tired areas but there are some little gems very close to the town centre, one is Oxton, it’s like stepping back in time, beautiful period properties, a Pub, a cocktail bar, some of the finest dining experiences in Merseyside, in fact if you thought ‘Oxton’ sounded familiar, ‘Fraiche’, a Michelin Star Restaurant in the Village was recently voted the top Restaurant in the UK by The Sunday Times! The area is very community driven has its own village square, within this it has the equivalent of Ronnie Barker’s ‘Open All Hours’ corner shop! Arkwrights’,  a Deli, a Butchers, a Post Office, hairdressers, florist, bridal shop, beer specialist and a lovely quaint shop called ‘The Drawing Room’, I find the shop fascinating and I feel so at home in there, Jane the lady who owns it is always so kind to me when I’m in she’s never pried despite the obvious changes in my appearance these days. I buy my friends little thank you gifts and birthday gifts from here. Handy thing is it’s a ten minute walk home all downhill; yes I still wanted my daily exercise, this beast wasn’t going to have me a prisoner in my own home! I’m fighting you all the way fluffy stuff!

Sometimes I’d take a slight diversion to see Jen at ‘Barberanne’s’ often just for a comforting chat and cuppa and of course to console me over my increasing hair loss. Of all the things this is hitting me the hardest. I’d got my wig voucher, I’m not too sure about wigs, I was explaining this to Ann the owner of Barberanne’s  and a true friend too, despite having enough to contend with in her own life she was here for me. Ann had experience of wigs so she came with me to ‘The Wig Shop’ we hummed and aaaah’d I could not believe the cost of them and no we were not even contemplating ‘real hair wigs’. My voucher was worth £100 anything above that would be out of my own pocket.  We selected a blonde wig, YES I am or rather was a natural blonde! The wig was longer than I wanted but Jen said she would style it for me.

I tried it but I couldn’t get on with it, my head was constantly hot and as the steroids were giving me ‘moon face’ the wig just made my face look chubbier. I tried it, it all felt so unnatural, so not me.  I found a long blonde wig in another outlet later on, similar ‘posh box’ but about 70% cheaper than the Wig Shop Wig! I thought I’ll buy it and try it, some liked it others didn’t I couldn’t get on with it either.

We went over to Grimsby to see all of the family and to get some pictures of us all together, I wanted to build memories for the kids and grandchildren, I wore the wig

but after seeing the photo’s as fantastic as they were I wasn’t looking at me, it was a woman in a wig with my family! My mind was made up I went to see Jen and said “Sod it” wigs are just not for me, I needed to be me! And the wigs never came back out of their boxes…

What was becoming apparent too was my hair was changing colour! This is one of the known side effects of Radiotherapy treatments, it doesn’t happen to everyone, our bodies all react differently to it, sadly my days of confidently saying I’m a natural blonde are over, another case of being kicked whilst I’m down! I still keep asking myself “Why me, Why me?”

Routine and normality are key to me, I don’t have OCD but I have to have a purpose, we’ve got eleven rooms from the ground floor up at ‘Shute Manor’ hehehe.. my quirkiness again, I bought Andy a name plate for the house in slate, with us it’s never been about throwing lots of money at each other it’s the thought behind the gifts most of the time.  It’s a big old Victorian house that we’re very slowly restoring, original wooden floors throughout and high ceilings, a dust monster’s paradise and Mrs Bouquet was having none of it, so the house was swept several times a week top to bottom, where was this stuff coming from?

We will all react differently to treatment but I’m a firm believer in a positive attitude will help you through your treatment, feeling sorry for yourself I’m certain will ‘drag you down’ and with that could come other health problems. I have my down days but most of the time in my head I’m constantly telling this beast “Hit me with your best shot, I am NOT giving in to you!” Am I right? I’m not sure, I just know I feel better within myself for believing it. Remember you aren’t in this battle alone, there is a whole ‘invisible’ network behind you, any combination can help and you are the person best able to judge who you can share your concerns and fears with, it could be family, close friends, your medical team organisations like Macmillan, you’ll know who can help but you’ll probably never truly understand just how helpful they can be to you and your immediate family until you take that first step.

 

And So my life extending treatment begins

Operation over, delivering bad news to family and friends, considering our future, Wills, this truly was a ‘meltdown moment’ for us but like a lot of things right now they have to be done and there is no putting them off. On top of that I’m living in ‘no man’s land’, I’ve been diagnosed with an aggressive & incurable Brain Cancer, my life can only be extended by treatment and yet I cannot start my Radiotherapy and Chemotherapy programme until my skull has healed and Dr Haylock said this would be six weeks!  I’m a mess inside! What damage is this beast doing whilst I cannot have any treatment, will it make things worse, has it grown back already? I’m still on fuzzy drug and steroids; steroids are an anti-inflammatory drug, your body produces steroids daily naturally but in some cases not often sufficient to meet severe conditions and they can help, they’re a drug to take seriously, you have a card to carry should you need to tell anyone or if another Dr is treating you. You cannot just stop taking them you have to be weaned off them slowly, I’ve got all that to come.

I tried to keep busy and there were more hospital visits we met a fantastic Specialist Nurse in Dr Haylock’s team, her name is Helen  she’s been a rock throughout for us, she guided us through the early days, we had a direct dial and a bleep number for emergency times.

Monday 2^nd September we popped into Clatterbridge I’d been told about a Wig Voucher, I’d been told about head scarves and lessons on how to wear & tie them, my hair was going to be falling out fact, I’m vain and I want to look my best even during treatment, it was a chance to catch up with the MacMillan Team again too. I was also told about a support group called “look good feel better” holding classes on how to apply makeup during and after treatment, some people lose their eyebrows, the ladies amongst our readers will appreciate any help at the best of times is fantastic but right now a half day course and leaving with a goody bag of samples from large makeup companies does wonders for your morale.

Wednesday 4^th, Helen called and we chatted she asked how I was feeling, how I was coping, did I have any concerns? I explained the things that I considered relevant, I was struggling to sleep, I was having memory lapses, I start a conversation and boom! A word just won’t appear, how stupid am I? Helen reassured, sleeping was probably the high dose of steroids, the memory lapse could be post op swelling still. Helen then told me that a provisional date was set to start my treatment, a week today, Wednesday 11^th September.

In between then I would see Dr Haylock and he explained I’d have blood tests during my treatment to monitor certain elements of my blood, things need to be finely balanced during treatments, Radiotherapy can have differing effects to Chemotherapy and I was having both treatments. I’d be weighed too, the type of Chemotherapy I was to be on was going to be a tablet form, it’s called Temodal. (The Generic name is called Temozolomide) Your ‘bespoke’ dose is based on your height and weight.

I need to waffle on Temodal, like many we’ve dropped money in charity buckets, we contributed to TV appeals, we don’t often get to see or take the end result of of research, in this case, Cancer Research. Temodal/Temozolomide started its life thanks to

pioneering work from a Professor Stevens at Aston University in Birmingham in the 1970’s it took ten years of hard work with other colleagues and ‘Cancer Research UK’ funding to convert CCRG81045 to Temozolomide. Please read this article for the full story,


http://scienceblog.cancerresearchuk.org/2013/07/18/the-story-of-temozolomide/and remember next time you see a charity bucket or appeal every penny does count.

Right, it’s Wednesday 11^th September and I’m at Clatterbridge for the start of my treatment. Andy & I checked in at the Radiotherapy suite and a couple of minutes later one of the radiographers appeared she’d got a small pot with her, in the bottom were several size and colour pills, The Temodal. I had to take it 20 minutes before my treatment start and well, here we go, I was given anti sickness drugs but it was suggested I saw how I went on without them, I coped fine but you may not. You should handle Temodal capsules with care, as a precaution always wash your hands after taking.  With the aid of a cup of cold water, my life extending journey was beginning, I’m relieved, I’m apprehensive and yes I’m scared but there’s no alternative here. The short walk in to the radiography suite treatment room was just myself and my radiographers, this stuff is radioactive, as patient you have to receive specific pin point accurate doses but no one else can be in the room with you.

Not a huge room but well lit and the team offer you the option to have mood lighting, you could have music on too, they truly want you to be relaxed as possible. There was a treatment table in the room and my new friend ‘The Mask’, my personalised ‘very attractive’ mask was waiting for me. I’m invited to sit and then to lie on the table, you wear whatever you want to wear, there are no hospital gowns or any levels of indignity, you are treated with the utmost of care. There are two radiographers with you at this point and they’re very reassuring throughout. The mask was lowered over my face and I heard the clips click into place. There was then what seemed like five minutes of setting up the machinery the ladies worked as a team double checking the settings. I’m lying there taking it all in through my mask, my steroids had put a little weight on to my face and so the mask was a bit snugger than originally planned but better too tight than too loose, I ended up with a few patterns on my cheeks, chin & forehead, don’t worry they soon disappear. The radiographers left the room going into their protective booth keeping them away from the harmful rays. The girls could still see me, I could see the back of my eyelids.. heehee

One of the team spoke to me via a microphone asking was I ok? Then told me they were to start my first treatment and if at any time I had any problem I was to hold my hand up, I never had to during six weeks of treatment. The girls explained the table would move during the treatment and this was normal, the machinery remained fixed the table moved you to the right treatment location. So the first treatment beam was being applied, you cannot see it,  there is little noise either, the table moving up and down and left or right was bizarre but not frightening,  it’s all quite tranquil, above all you do not feel anything. A minute or two later and the girls are back in with me a few more adjustments and double checking their notes, they ask me how I am, I’m fine and out they pop again. “We’re starting treatment two now Julie, same again hold your hand up if you need us”. The number of treatments you have will vary by patient I can’t recall precisely how many I had but it wasn’t more than four. At the end of the treatment, the girls were back in with me, my mask was unclipped and fresh cooling air hit my rosy cheeks. They sat me up and my legs dangled off the table and I regained my composure, they checked I was ok and then waved me on my way with “See you tomorrow Julie”. I’d got six weeks of this Monday to Friday; the chemotherapy was seven days a week so in total I was to have 30 radiotherapy treatments and 42 doses of Temodal.

Andy was waiting outside for me and we headed home. I’d been told to watch out for any side effects, and to call if I was having any problems, I had some tingling later in my left hand and flushes to my face & chest area. Later on that night I had tingling in my left fingers and a little numbness in my left elbow and forearm and I felt slightly nauseous but I was never sick. Symptoms subsided and we drifted off to sleep, I slept ok.

So this was my daily routine now. Once a week I’d see Dr Haylock for a review, I’d have blood tests done, a couple of weeks in he advised my Neutrophil levels were low, low enough that a planned increase in my Temodal would be delayed. Treatment impacts on the blood and Neutrophils are I understand the good guys in our white blood cells that help us fight off infection, too low and you run the risk of contracting pneumonia, could result in hospitalisation and being blunt pneumonia out of control can kill. You can be blood transfused in some instances (I never was) replacing your blood with fresh cells but it’s all extra stress when you least need it. Thankfully I never dropped further but equally my cells didn’t recover enough to have the Temodal dosage increased, besides that my treatment ‘regime’ went perfectly to plan.

Tiredness kicked in and on 25^th September my hair started to fall out! My beautiful ‘crowning glory’, my beautiful long hair it was going, yes, I cried, I’d previously lost my hair after surgery around 10  years ago, seems my hair doesn’t react well to surgery, it must go in to ‘shock’. Thankfully my hairdresser Jeanette (Jen)  supported me through the first time and has over the years become a dear friend, she even travelled across country to our wedding to do my hair on my wedding day, she’s been a true rock and friend, there is no nonsense with Jen and with this latest news we set about cutting my hair down to a sensible length in a style that would suit and something if the day came could be hidden under a wig or two.

 

A lot of people to thank this time, some I’ve never met, I suspect I never will but recognition is due.

·        Cancer Research UK and its generous supporters, yes that might include you!

·        Professor Stevens and his associates who without their determined and lengthy
         work many GBM Grade IV sufferers would have had much shorter lives.

·        Helen, our specialist Nurse who always has reassuring answers and acts  
         on what needs acting on quickly & efficiently without fuss.

·        Clatterbridge Team Radiographers

And last but not least...

·        Jen…… xxxx

 

 

 

A Few Words of Advice


Andy here writing this one with the lovely Mrs ‘Foxy’ Shute,  (Frog indeed! Uh! ) You’ll have gathered by now we are both quirky in our own little ways especially when it comes to our love for each other.


To start this blog edition we’ve said from the outset we want to help others on this journey, we know our approach won’t fit well with everyone and at the end of the day, if you are in this position you will want to do things probably your own way and that’s great, our concern is those who are too scared, too focussed on the bad news delivered to consider all angles.

A great starting point is that from day one of this enforced nightmare journey we promised each other we would not change towards each other, our relationship blossomed through our quirky humour and ways so why when we needed to be as united as possible would we do different?  We asked all of our family and friends to treat us normally too, the last thing we need is pity, we need support and to date every single person has stood shoulder to shoulder with us on this, we don’t get pitying looks or as can often happen when one person is seriously ill (Especially if say wheelchair bound, I’ll add Julie is not) is that they can become the ‘third person’ in a conversation or discussion. The medical profession has come on leaps and bounds in this regard, I can say that when my Father who also died of  Cancer/Brain Tumours, also had Brain Surgery some 30 years ago his Doctors would stand at his bedside and talk to ‘us family’ about him not to him, we knew no different then and Consultants were on pedestals and certainly not to be challenged, it wasn’t the done thing. These days from our experience everything is so, so different. Consultants, Surgeons, Nurses, Charity Staff are focussed on their relationship with the 

Patient but not at the expense of the family. Only this week Julie had an appointment with Mr Farah her Neurosurgeon & Alison one of his excellent Specialist Nurse Support team, more in a future blog on this meeting but my Mother was staying with us for a few days and she was invited in too and welcomed into the consultations, she was amazed at how different things are compared to our first Brain Cancer experience with Dad.

So back to us treating each other as we always have, we truly do, Julie will always be ‘Foxy’ to me, as previously mentioned we met over the internet and her ‘nickname’ contained MeFoxyWitch, I abbreviated it to ‘Foxy’ and like a lot of things with us it lasts right up until today. We still disagree now and again and I’m still occasionally told to ‘go & boil my head’ (Well actually the real phrase she vents at me isn’t apt for here hahaha), we never fall out for long, we have different opinions and views and we respect each other for them.

What else? Well in the early days you will have so much to take in so many questions, so many things to consider, for example:





EddyBear
 

We married four years ago, we’re both in our fifties we hadn’t considered Wills, we were too busy having fun to worry about serious stuff.  We swiftly arranged an appointment with a firm of Solicitors to both have Wills drawn up. You don’t have to use Solicitors, Support organisations can offer advice on the Service of drawing up Wills, remember at all points you decide what goes into your Will and who gets what no-one else.  Our approach was to list the things we considered valuable not just financially valuable (or it would have been a very short list haha) but a lot of our personal effects are sentimentally valuable. You will be asked to confirm your own wishes from when you pass away, such as burial or cremation – my brother years ago wanted to be cryogenically frozen, told you we were a whacky family!  Anyway we soon had our wills ‘wrapped up’.

Other things were bugging me, Julie didn’t want to know how long she had left and I desperately ‘needed to’ would it be weeks, months or years? I had to respect her wishes and her medical team were rightly not going to tell me. Thank god for the internet! I researched like mad, the reality is there is in Julie’s case no specific answer but there are guidelines based on surviving patient data, it wasn’t that I wanted to set an alarm clock but I needed to have some control back on what was happening in our lives, I wanted the best for her however long we had left together, should I 'blow our savings' or should I save them for a longer journey.. If you are going to search the internet I’d recommend sticking to respected Cancer & Medical sites, everyone has a view or they’ve found ‘the cure’, you’ll read of certain fruits & plants being miracle cures – they may well be for certain types of Cancer but not necessarily your specific type of Cancer, a significant number of drugs we take daily derive from plants or plant extracts. A serious warning, do not dabble with any kind of drug or take anything anyone else tells you is a great idea without first discussing it with your Oncology Team. Think logically when someone tells you of that 'miracle cure', IF they were so miracle why have drug companies not brought them to market and making their usual fortunes out of them? The next blog talks more on Chemo drugs.

I had to consider hospice care, family time together, I’ve never disclosed this to anyone before not even Julie, but I had to consider should I be prepared to discuss her returning to Grimsby where her Children are, we are 180 miles away, what was going to be the right thing to do, was there a team there equal to what we had for Julie here, my head was in turmoil, I needed my thought process to be clear though. Julie hadn’t even started her treatment and it was question after question that was being raised by myself within my own head. I needed an A4 Pad I wasn’t going to remember half the things that were flying at me so I wrote them down ready to ask whoever I thought could answer them. Most (questions) in the early stage were asked of Dr Brian Haylock, Julie’s Consultant Oncologist. I have to thank him for his patience with me, I’m terrier like at times and if I had read something relevant to Julie’s specific Cancer type I needed his considered opinion, and in turn that resulted in more questions! Poor bloke, one day as we sat in a consultation I opened my pad and I saw his shoulders drop, he could see my list, reading body language has been a vital part of my varied careers and so I smiled inside as I knew what he was thinking..  I had questions, he had a lot of answers, my focus was on Julie’s care so I was going to get my answers, even the odd glance at a watch (smiling as I recall these events) wasn’t putting me off my agenda. Equally I knew when enough was enough. We were and remain professionally polite throughout Julie’s consultations.  I’ll never be able to thank Brian Haylock enough for his professionalism and his desire to deliver for Julie what is called ‘Gold Standard Care’.

I’d recommend to you if you’re walking our path, make notes, you’ll come out of appointments and think “I wish I’d asked”, or “did he say…”. Even at times after an appointment as we chatted things through Julie would say “Dr Haylock said..”  I’d clarify from my notes that something slightly different was said.

I work in industries where jargon seems to rule, it drives me nuts; phrases like ‘Blue Sky thinking’, ’Key Performance Indicators’, ‘Thinking outside of the box’ and daft old me thought ‘dashboard indicators’ were something that came only on cars, you’re probably as puzzled too but yes some people actually talk this pompous nonsense. I have though picked up some great phrases and whilst none of the above help me in my quest alongside Julie the following two I live by, they might help you…

1. “Fail to Plan, Plan to Fail” Do your research, understand what is important to you and make the necessary plans, no one else will understand your own needs better than you and if you plan, things will run smoother. Go into appointments with your questions ready is a great example - leave space to write your answers.
2. “We have TWO Ears, We have TWO Eyes and we have ONE mouth – Use them in those proportions.”  What’s he on about now?  It’s simple really but very hard to do for most of us, we all want to talk more than we want to listen, (Julie just said she does it all the time lol) its human nature and when we listen are we just hearing or are we truly taking in what we’re being told?  In meetings listen to what is being said and make your own notes as you listen, you’ll have more questions but asterisk them, let your Consultant, Doctor, Nurse, Radiographer  finish and then use that mouth of yours.  It has stood us in good stead I hope it does you too.

Thought I'd finished, some 'hot off the press news' though. Julie's Blog has made the news.  I'm truly proud of 'My Foxy'. Have a read, click the link! Wirral Globe Article on Julie's  

Please keep spreading the word and sharing the blog.

With Thanks to Emma Rigby, Senior Reporter, Wirral Globe.