Actions speak louder than words

Sometimes people do things which leave you feeling very humble.
This weekend has been no exception and I am truly glad for our friends, old and new.

We have very close friends with two little girls, who despite just returning from a holiday touring France, quite probably skint, dropped everything at short notice, drove 220 miles, checked into a local holiday caravan site - just to spend the weekend with us. Being with us, supporting us, drinking beer, making us laugh. Just like old times...

Another family with two little girls, very old friends of Gary (& me now of course), hired a private jet (no, I'm not kidding), flew into Exeter airport, and spent 24 hours with us. Being with us, supporting us, drinking beer, making us laugh. Just like old times...

And an very shy Mum, who's little boy goes to school with Lily, came to my door with fresh cut roses from her garden, offering me a hug, her phone number & any help she could give me with Lily or otherwise.

And my sister Becky and family are on their way. They want to be with us, support us, drink beer with us & make us laugh. Just as always....
And my big brother. Who sent me a card. The words he'd written made me cry. But that his wife is away & he'd bought the card & posted it himself (!) - means everything to me.....

I am reminded of the Brenda Russell song:

"You can reach me by railway, you can reach me by trailway
 You can reach me on an airplane, you can reach me with your mind
 You can reach me by caravan, cross the desert like an Arab man
 I don't care how you get here, just- get here if you can......"

Thank you.
All of you out there.
And I love all of your words too xx

Lightening results

Its another new day. And its sunny - really sunny.
I want to feel sunny, but I can't - not today. I feel cross. Annoyed. Frustrated. I want my results.
I want to stamp my feet - loudly.
I kick ass.
I'm told that for ten days my results have been 'awaiting verification' - NHS speak for 'need signing off'.
My life is in the hands of red tape bureaucracy.
Then a glimmer of hope. The results WILL be ready for the MDT (multi-disciplinary team) meeting at 1pm.
I'm promised the results after 2pm. They will ring me. No. I'm taking Lily out. I will ring them when I return.

I'm back in control.

Lily & I go out for lunch. Then to Rock Park - meeting up with some good friends.
It starts to rain.
Really rain.
Then thunder.
And lightening.
I get the message God....
It's time to head home & make my call.

It's quite good news.
No cancer in the lymph nodes = no immediate spreading = I might see next Christmas.
Good margin around tumours has been removed = no more surgery = I keep my boobs as they are.
Excellent.
We still haven't got the HER2/triple negative results in. But that's ok-ish, cos as the cancer hasn't spread, so my worst case scenario of trip-neg & spreading, which is a very high risk of an early demise - has been put on hold.
So what next?
2 weeks of freedom! And I can celebrate my 46th Birthday!
Full body CT scan
Oncologist (special cancer doctor who sorts the treatment/chemo/radiotherapy etc) on Sept 8th.
First chemo to start soon after.
Whoopee!
I lie.
But I am relieved.
I'm not going to die. Not just yet at least.
Unless I get struck down by lightening........

Galaxy Overdose

I was promised my results today, Wednesday. Not whether it's cancer or not cancer. Had those. THese were important. These will determine whether I've got the cancer with a good chance of survival or whether I've got the cancer that catapults me into heaven a lot sooner than planned.
Well I think I was promised my results - because they are still not available - and I'm beginning to wonder if I've imagined the whole thing. Perhaps I'll do a Bobby Ewing (I could be Booby Ewing), take a shower & the whole thing is a dream.
No, the conversation with my BCN on Monday, definitely said that the results HAD to be in on Wednesday, so they could be discussed at the MDT meeting on Thursday.


So, with today in mind - I haven't slept too well for the past couple of nights. Including last night.
I took the phone in the shower with me this morning. I had my mobile glued to my hand all morning in town. I failed to mention of course, that I have permission to drive from today. Lily squealed with delight as I turned on the engine. 'Will you have to take your driving test again Mummy?' - O good heavens - I do hope not.
I have a morning of deja vue - as I go to the salon, to have my nails done - while waiting for the said results. This time round, the girls all know whats going on, and we all stare at my mobile willing it to ring.
It doesn't.
No results.
I go home...perhaps there's a message on the land line.
There isn't.
No results.
Need Galaxy chocolate.
Have some.
No results.
Need more Galaxy.
Have some more.
No results
A friend says eat chocolate - so I do.
Galaxy.
No results.
Ring the hospital. There's been a delay. Hope to have them by midday tomorrow for the MDT meeting
NO RESULTS


I'm going to be sick.
I've overdosed on Galaxy.

Top Trumps

Did I mention that Dad popped in the other day?
 He didn't have a pig or a goat with him, but was rubbing his hip - clearly in pain. Sometimes Dad suffers from physcosomatic-istis.
What's up Dad?
Ohhh....I've got a real pain in my hip
Well, should you see the doctor?
I'll see...I'll be OK
Look Dad. I know both my sisters have multiple sclerosis (MS), and now I have cancer - but this isn't a game of Top Trumps you know....you don't get more points for needing a hip replacement!


The next day, Dad pops in again....no sign of any pain...'All gone' he pronounces 'must've been a trapped nerve'
Ah - you lose big man!


PS: Did I tell you I love my Dad? x

Pathologists do take holidays

I know.
I'm waiting for my results tomorrow (Friday).
My BCN calls. Your results were not ready for today's multi-disciplinary team (MDT) meeting. That means there was nothing for My Surgeon, the oncologist, my BCN & other professionals to talk about.
The results are delayed because two pathologist haven taken their annual leave. What can I say?
I'm deflated, frustrated - not at all relieved - I sound like an inflatable doll.....
I just want to get on with it.

BCN says a couple more things that I hadn't considered like 'we haven't ticked the surgery box yet'. What do you mean - I've had my surgery - got the scars to prove it. No she declares...we wont know until we get the results...I might need more surgery if the cancer has spread....bugger.
I try to quiz her about whether it's triple negative or not...we won't know until the results are in....this is getting tiresome. Then she mentions The Royal Marsden in London. If it's the cancer that they think it might be, but can't be confirmed until the results are in (yawn) - then this is a centre of excellence for cancer & they have some drug trials on the go. 'I'll do it' I think. I'll travel the world if I have to. I've worked in pharmaceuticals & the prospect of a drug trial doesn't frighten me. It's no worse than having cancer - is it? Anyone fancy a trip to London?

I set about letting everybody know not to worry for me about tomorrow.

BCN promises to ring me when the results are in next week. I can have the results, but wont know what the treatment plan will be until the MDT have met on Thursday.
Hope they haven't gone on holiday too....

Recovery

It's lovely to be home.
Lily is being extra cautious, not to hurt my poorly boob. After an hour, I put my jim-jams on & retire to bed. Lily joins me later for a bed-time cuddle - bliss.
Then Gary joins us - heaven.


Before I left hospital yesterday my BCN told me not to waste this year trying to look too far ahead and looking for answers. It scared me. I cried for only the second time. I don't know if there was a hidden message in there - but I don't intend to waste each special moment, or even each ordinary moment. And I promise to tell those I love - that I do love them.


I know I'm supposed to be resting, but I can't resist stripping the bed - one handed of course. Put some washing in - get told off - ask Gary to carry it in for me. Everyone is being very kind.
Flowers arrive everyday - not any old flowers - some of the most beautiful arrangements I've seen - thank you my friends. And cards, and amazing messages, and texts and calls - I feel un-deserving.


It's a lovely weekend, my gang of three back together again.


One of Lily's friend's Mum offers me a life line for Monday & Tuesday. Gary wants to be off with me, but is presenting to his bosses - a preplanned event & I think he should do it. So a wonderful Mum - who I've asked to join my posse of girls (vacancies do still exist) who I may call on for help in the coming months, has Lily for a sleepover Monday & Tuesday. Another adventure for my little one - she has an amazing time. I am hugely grateful - you know who you are - thank you.
Mum & Dad come on a daily basis. My ironing's been done, and my every need catered for. Dad even pops round to put my ASDA online order away - i beat him to it of course. No goat yet - I must be ok!
I feel a fraud...I'm healing well & have excellent mobility. I'm sorted.
Roll on Friday...I want those results. I want to know which shitty path I'm destined for. And I want to know if that shitty path comes with a sticky stick too.

Post Op

Awaking in recovery is nothing new. I've been here before. I'm alive! Hurrah! - my first worry over with.
The oxygen mask is swapped for an oxygen nose hose. I feel sleepy again....

The next thing I know I'm being wheeled into the ward. I see Gary in the corner..it reminds me of when I first saw him on our wedding day...a huge sense of relief engulfs me...'he's here' I think, 'eveything will be ok now'.
I know Gary's pleased to see me, as I am him.

Gary unpacks my large holdall & wonders where I've hidden the kitchen sink this time. I'm an ex Brownie/Girl Guide...I like to 'be prepared'. Gary goes back to the sanity of work & I sleep on. Well - that's the plan. I just didn't bank on one farty-pants patient one side and 'need wee-wee' every few minutes the other. This is why I have BUPA...to get my own room in the event of a serious illness/operation..except BUPA/North Devon/My Surgeon is not a good mix & BUPA won't oblige. Tough titty.
I'm in the acute ward. It's noisy, busy, the lights are very bright & don't get turned off at night. I'm not allowed privacy - they need to see me. The staff are wonderful. All of them. The tea lady doesn't mind making one of my posh frothy packet cappuccinos. The nursing staff do everything to make me comfortable - except turn off the lights. I've got a morphine syringe driver - wonderful - I'm legally taking class A drugs....wheeeeeeee!
Talking of wees. My first in a cardboard (yes cardboard) bed-pan goes horribly wrong. At least I get a wash & my own PJ's on. My second, in a commode is highly noisy - no privacy. I insist on the 3rd - at 5am the following morning - that I am unplugged from the machinery & walk myself to the loo.

I take a peek at my boob. It's still there! In a fashion anyway..excellent.

I pretend I'm in BUPA & ask the staff for tea & biscuits. I get the tea & provide my own biscuits. Wish it was morning.
The next day passes with a flurry of doctors nurses, ward rounds, meals, cleaners, discharges, newcomers, emergencies and visitors.

Gary first - I'm glad to see him.
Mum & Dad and my lovely Lily. I need a hug. I want to smell her - breathe her in....oh I have missed her. She's happy, brave & quite content. When it's time to leave - she doesn't cry - see you tomorrow Mummy..I hope she can say that to me a million more times.
Gary again - I'm still glad to see him.
Crikey - my brother's here. My big brother who lives 200 miles away & doesn't do hospitals. I must be ill...I'm honoured. We stand & hug. We are silent - we don't need words - Mum loses it.

Another night's sleep/torture. I'm kitted up this time. I put my Virgin Atlantic eye mask on, my iPod in my ears, settle down in a half up position - can't do left or right. I've got drains on the left & morphine/saline drip on the right.
Eventually it's morning. 'That was a more peaceful night' - I declare to my fellow bed companions - 'No it wasn't' they groaned ' you were snoring really loudly'...ooops...well I was on my back - sorry!
I think I'll go home today.
My Surgeon agrees.
We plan for tea-time.
It works.
Lily comes to take me home.

Operation Boobiliscious

Finally the day of the op is here.

Gary & I are up early. Neither of us get much sleep. I need to wash my hair...I might be having part of my boob removed, and my hair will all fall out soon, but there's no need to look shabby at this point.
Lily has already gone to Mum & Dad's (Granny-Mo & Grandad's) for a few days/sleep-overs. Another niece, aged 14, is also going to stay - so I know she'll have fun.

We arrive at the hospital, at 7.45am precisely ,get shown a bed & I undress to model my theatre gown.
I'm measured for sexy white stockings (the medical variety, I'm afraid, to prevent DVT) & labelled appropriately in case I a) forget who I am or b) go for a wander & get lost
A wheelchair arrives (I'm not ill - remember?) to take me to x-ray. Gary & I decide it's time he left me to it.
We hug, a little kiss & he utters a few words of encouragement...."where did you say your insurance papers were kept?" Love you too.

Down in x-ray, an oldish but lovely "was very handsome in his hey-day" Doctor pokes wires into my tumours under ultrasound & draws on my boob to help My Surgeon again. I'm surprised he doesnt write 'in here' on my boob.
I'm escorted to theatre and prepare for a nice sleep.

'Just a little prick' the anaethetist says - oh the old ones are always the best. It's 11.20am - I can see the clock. 'Look after Lily please God' are my final silent words...I'm gone.....zzzzzzz

Nulear Medicine Tuesday 9th Aug

We arrive at the Royal Devon & Exeter Hospital in very good time. Good job really - since no normal person seems to know where this specialised department is. We (that's Mum & I - my constant companion) find it eventually and I'm reminded of that basement where Trevor Eve works in 'Waking the Dead'. The staff tho, are terribly nice, makes us a coffee (no charge) and ask us to wait. I'm called through while my coffee is still steaming, strip off my 'lucky' magenta bra - again! - and wait while a gowned-up lady nuclear radiologist proceeds to inject radioactive nuclear meds into my left nipple.
I expect it to hurt - A LOT - 10, 9, 8, 7, 6, 5, 4, 3, 2, 1, I count out loud. 'That's it - all done' the gown announces. Oh...well that's not too bad actually. 'Now dear, go into the waiting room & rub your breast for 20 mins to get the liquid moving into your lymphatic system'
Have you ever sat in a hospital gown, in a waiting room of people, who are waiting for all kinds of radioactive procedures (not just of the boob) - rubbing your left breast? I cannot suppress my urge to giggle & Mum & I talk loudly - just to let folks know that what I'm doing is perfectly legit!
A scan follows & the sentinel node shines up brightly. In 24 hours, when I have surgery, all the lymph nodes will show up, giving the surgeon a clue what to take. The radioactive gunk doesn't show which nodes have cancer in them, the surgeon has to guess, but it does show where all the nodes are - so the surgeon guesses with clues!
Back to NDDH to meet My Surgeon.
Stop at Morrison's first for a quick bite to eat. Mum has salmon sandwiches - I opt for triple choc cheesecake...I need it!
We meet My Surgeon. As warned, he is a serious Australian who doesn't get my daft sense of humour. Because all this nonsense is very serious, I keep reverting to Victoria Wood/Julie Walters/Black Comedy. Some people who know me understand - others don't. I try my hardest to be serious with My Surgeon, I feel a bit like a naughty school girl in front of the headmaster. We go through everything...shake hands...& I'll see him tomorrow for the operation.

My Chemo Box

I have an adorable younger sister  - Becky. It's her daughter, my neice - aged 10, that is 6 years in remission of leukaemia. If there's one person who can possibly know what I'm about to embark on - it's Becky. Not only from her daughter - but travelling the same road with a chemo trial/treatment herself for a non-cancerous condition for the past couple of years.
We meet for the first time since my diagnosis. We cling onto each other. Becky cries - I let her. I still can't get used to hurting those around me, that I love the most, with such awful news.

My neice presents me with a box, tied with beautiful ribbon. 'Your Chemo box, Aunty Jane - it's from all of us'
I'm choked.
I open the box & the contents are as follows:
One fabulous head scarf....
One Emma Bridgewater journal/notebook for my scribbling nonsense
A copy of Jodi Picoult's 'My Sister's Keeper' a story of a family's battle with leukaemia
A chunk of 'The Comforter' from Lush for my bath
A slab of 85% cocoa chocolate - to take the taste of chemo away
A tin of fish (and a promise of black olives) cos that's what my neice remembers eating while on chemo
Lance Armstrong's legendry account of his fight with cancer
A copy of 'The Slap' - This years bestseller - 'whose side are you on?'
And finally, a copy of 'A Glimpse of Eternity' a story of life beyond death (just in case!)

I'm touched.
Each item, I know has been carefully chosen for practicality, for inspiration and more importantly, for love. I shall treasure these items...except the ones I can eat of course!
Thank you.

Tuesday 2nd Aug Pre-Op

Mum & I go for the pre-op.

Well only I need it - Mum doesnt!

BP/ECG/MRSA/ABC/123/XYZ

All fine

We find out more. I might need a line put in to receive the drugs. Now that snippet has really thrown me. My dearest niece had leukaemia when she was just 12 months old. She had a line put in her chest for drug delivery in / blood test out. We called the line her wiggly. She had wiggly bags to keep it in that Mum made for her. Somehow the thought of a wiggly of my own has made the cancer really real. Mum – a retired ICU nurse asks questions I never thought of. What’s weekend oncology support like? (Not good apparently). She also asks on behalf of my lovely friend – can I still have a drink in chemo? (yes – but might not fancy it)

I have to go to the Royal Devon & Exeter hospital on Tuesday 9th to have nuclear medicine put into the breast. A sentinel lobe biopsy has been requested. & the nuclear radioactive substance shows up the lymph nodes to the surgeon. If the cancer hasn’t spread to the nodes then only nodes number 1 – 5 will be removed. If there is spreading more will go. The more that go – more chance of side effects like lymphodaema.

Then onto to meet My Surgeon – my surgeon who I haven’t met yet. I met his oppo first time...can't wait - yeah!

Telling All

The news from the meeting with BCN wasn't brilliant. I'm young but uncommon. My lumps - or tumours as they are now referred to - are growing & spreading. There's a long year ahead of us.
We want to tell our friends & set about the task. It's hard. We adore our friends - some of our friendships go back 40 years - I hate upsetting people - but things are moving quickly & we need to keep up.


The dilemma over my father in law continues. We are in the car & Gary phones his step-mum (whom I lovingly call Mrs Bouquet - she knows that). Gary breaks down as he speaks with her...it's distressing for both of us. We both cry......'and I want you to know,' I blub, 'that I've always been faithful to you & I've always loved you' - I'm not sure why this is relevant at this particular juncture - but it spouts forth just the same.


For those of you who know my Mum & Dad...you already know what amazing folks they are. I've always been incredibly close to them and consider them to be my best friends as well as my parents. They are kind, loving, generous, solid, supportive, and wise. They are hilariously funny and although being 74 & 75 respectively - are still fit, active, & hugely young at heart. Family is everything to them - and this is never lost on my 3 siblings or me. Gary & I moved to Devon from Derbyshire, to the next village to them, four years ago because I missed them so much.


How are your Mum & Dad with the news?, my friends have all asked. Well the truth is, Mum hasn't stopped crying yet - although tries to pretend she isn't & blaming hay fever which she doesn't get! She's been & bought me new slippers & PJ's for the hospital and cancelled all their plans for the coming year. Dad just keeps bringing me things...huge bunch of gladioli, 2 cabbages, 12 eggs & a bunch of sweet peas. If he turns up with a goat or a pig - I'll be worried! LOL. But I adore them - you know that.


My older brother says at least I can paint my baldy head blue & go as a Smurf to the next fancy dress party. On that note I asked Gaz if he'll mind sleeping with a baldy...he replied that I'd been sleeping with a baldy (him) for years - & it didn't bother me. Haha. My older sister cried so much I gave up trying to hear her - lovely flowers tho - thanks!


We've told Lily that I have breast cancer, that they are some bad cells in a lump in my boobie & the doctors are going to cut them out in hospital. She also knows I'm going to have some very strong medicine which will make my hair fall out and I'll have to wear a wig or silly hats. We've been making things as fun as possible - she's chosen some fabulous wigs for me & we keep laughing about what if it blows off when I'm picking her up from school. She did say that if she was still breast feeding (can she actually remember that?)- she would suck really hard & get the bad stuff out for me - bless. I SO love her.


So we've told as many people as possible.
They've all been fabulous - through the tears.


And I just have to get over the feeling that I'm telling a huge fib.....because although I have cancer, and it's serious - I feel completely fine. Don't worry, Gaz says, you'll feel better when you are ill after the op....that's logic for you. I do love him x

Keep up!

Friday 29th July
So it's 9am the morning. Gary and I are sitting in a special room at the hospital, with my new best friend - Karen - my breast care nurse (BCN). 'Nice range of bras' - I say to Gaz, as I notice the shelves stacked high with bras called Dora, Bunty, Doris...yes - you get the picture.


The past 12 hours have been weird. From getting THAT phone call, I try to act normally in the salon & take Lily home - interspersed with phoning Gaz at work (It's positive, I say, you need time off in the morning) & phoning Mum & Dad....I'm so, so sorry, I say - I've really made their day.
At home we hug. All three of us hug. We hug until we cannot breathe. Lily thinks it's brilliant. We don't cry.
I share the news with two massively good friends. They cry - I can't think why?
We set about telling our immediate family. What a shitty thing to have to do to the people we love the most. Gary wants to tell his Dad...but we can't...he's terminally ill, on his last furlong - it's too cruel & we don't want the responsibility of finishing him off...still, Gary needs his Daddy too, at a time like this.


I don't sleep of course - 2am & I'm drinking tea and eating choc ices from the freezer - think I might be sick.
So here we are in the special room.


BCN holds my hand.
Lets get down to it.
75% of ladies have the oestrogen related breast cancer...but not me - I'm less common - oestrogen negative (ER-). No Tamoxifen for me.
Being tested for HER2 - whoever she is. If that's also negative - no Herceptin either. I'll be triple negative...and the drug for that is ....??? There isn't one - fantastic.
There are two lumps in there. Two?? Another one that's causing more concern is hiding behind the golf ball.
They are classed as grade 3 (eh? is that good or bad?)...it's bad - fast growing & spreading.
Well this is all going rather well.......
So, says BCN, you are booked in for surgery next Wednesday. Good heavens...speed of light...that's quick for the NHS - they can't be very busy at the moment me thinks. I haven't even mentioned my BUPA membership yet.
Breast conserving surgery to remove the tumours - I think tree-huggers/conservationists when they are trying to protect a forest from the savages of a new road passing through - then 18 weeks of chemo and then radiotherapy. Blimey, I think, who IS this poorly person Gary & BCN are talking about - I'm in the wrong room...I've only come in to talk about me lump.


We talk wigs/hats/scarves/sickness/fatigue/operation/no driving/childcare
And how to tell Lily. My lovely Lily. My precious 6 year old daughter who I love to the moon & back - for whom I will fight the good fight and I REFUSE to leave this earth for. Not yet at least.

Return for pre-op Tuesday.

Thursday 28th July

I feel tense all day. At 3.30pm, Lily & I go to my beauty salon to get our nails done. I'm struggling to concentrate and keep checking my mobile. The girls love Lily & she keeps them distracted. I decide to have my eyebrows waxed/tidied. One eyebrow done.
Mobile phone rings. I leap up off the treatment table & try to get a signal. I'm out of the salon door in the street when I finally the hear caller. I've only had one eyebrow tended to...will anyone notice?
"We need a discussion about your results" caller says intriguingly. Oh, sod that, I think...just tell me is it cancer or not? " Yes - it's cancer" caller says sadly.
Bugger
Better get my other eyebrow done.
Bugger again.

Monday 25th July

I took Mum for a special day out at the hospital. First a nice consultant had a feel. I'm glad I had my new matching bra & knickers on; in fabulous magenta...he didn't see the knickers tho. I wanted to giggle...not sure why. Mum's upbeat.
Off to ultrasound. Off with the magenta bra again. Knickers still under wraps.
Off for a mammogram. Magenta bra's getting a good airing today.
Mum & I need chocolate.
Back to the consultant - but in a room, prepped with small instruments....something’s up.
Magenta bra? yeah...off again.
Special lady holding my hand.
Core biopsy. Numb boob. Knitting needle with staple gun attached - I've been shot several times. Mum's worried. I quiz the staff...they're clearly poker players...give nothing away. Hope to have results on Thursday or Friday.
We wait for results... Tuesday, Wednesday, Thursday.

How it all began...

I'm three weeks into this silly adventure, so I guess you need to be brought up to speed.


I found a lump in my breast a couple of weeks ago, while showering. All the bumf I've ever read on this subject, suggest you look out for some juicy Birds Eye peas in your boob. What happens when it resembles a golf ball? Does that count as a worrisome thing? Anyway - how on earth did it get there without me noticing?
I thought about the little blighter for a few hours & later on that day, got Gaz to have a quick fumble. Yep. He could feel it too.
I went to the GP's the next day. "I don't want to make a fuss" - I reassured my lovely GP, "its probably nothing"..
I'm referred to the local hospital & I was fairly surprised to get an immediate response. An appointment had been arranged for Monday 25th July, 2011. Allow 4 hours.