Not your average lymphoma blog! A witty, irreverent and brutally honest look at life with and after stage 4B non hodgkins lymphoma.

Lady Sketch Chemo Diaries: The One With The Chemo Hair Loss.

Chemo Hair Loss - This Is My No Hair Day Hoody by Lady Sketch

‘This Is My No Hair Day,’ Pop Art Hoody, now available to buy from the Lady Sketch shop.

 

 

‘Another visit from CZ the lymphoma nurse today – such a lovely lady.  Apparently with this particular chemo hair loss is inevitable within about three weeks. I’ve laughed about how it’s in terrible condition anyway and joked to Al about wigs and bandannas but in truth I have no idea how I will cope with this massive test of my femininity…’  Wenna’s Diary Extract, 18th Jan 2012.

 

Chemo Hair Loss - Life After Lymphoma Blog by Lady Sketch

Pre – Chemo Hair Loss

 

Before losing my hair to chemo I was exactly the same as any other woman the world over – my relationship with my hair had been nothing if not complex over the years. I’d started life with white blonde baby hair, a colour I spent much of my teens attempting to replicate without much success.

 

Before no hair day, my locks were my crowning glory, such a big part of my personality and how I chose to express myself. How I fitted in.

 

My hair has gone from bobbed to shoulder length, to closely cropped and grown out until it hung halfway down my back. I scrunched it with mousse and a diffuser in the 80s, scrunchied and wrapped it with thread in the 90’s and nearly cooked it in the noughties with my GHD straighteners.

 

I’ve been every shade of red from vibrant postbox to deep beetroot, had unfortunate beige and brown stripes like a tabby cat and suffered my way through a truly cringeworthy 6 months in my early teens, when my fringe took it upon itself to go curly, but the rest didn’t follow suit.

It wasn’t until my 20s that I accepted a few inescapable truths, the main being that it doesn’t matter how long you leave the f*cking bleach on, you will never look like the woman on the box. At this point I stopped trying and learned that, when it comes to being blonde, you have to put your hair in the hands of the professionals. Fortuitously, it was also around this time that I made the acquaintance of my friend H, when we were doing an evening course in Counselling at Truro College. By ‘we’ I refer to H (stylist turned finance), myself (lost in the world) and my roots (long and dark) which H informed me, ‘actually made her fingers twitch.’

 

This was the start of a long friendship between the two of us, born out of evenings eating pasta & pesto with my hair in foils, watching Mistresses boxsets and playing with Al. H became my stylist of choice and worked her magic on my tresses for many years to come.

 

My hair was where I found my beauty and thus my confidence. Long, blonde, shiny and thick. Yes I’m a bit of a fatty knacker and can’t wear the things I’d like, but at least my hair is good, I’d tell myself.  At least I still draw admiring glances despite the size of my arse. At least I have something people can compliment.

 

‘You hide behind your hair,’ Mum used to tell me. And she was absolutely right. In a society where image is everything and our young women are bombarded by skinny role models and the implicit understanding that if you dare to be overweight, you are in fact a second class citizen, undeserving of love, respect or decent clothes; yes I did find reason to take refuge behind the blonde curtain.

 

But oh the grief I’ve given my hair… the times I cursed it for not doing what I wanted, the torture by hairdryer and highlighter cap, the strenuous efforts to make the curly straight, and vice versa. The times I loudly bemoaned my bad hair days, never thinking that one day it might not be there for me to hide behind. That one day, and many days after that would be, in fact, a no hair day. That I would experience chemo hair loss.

 

chemo hair loss - Life After Lymphoma Blog by Lady Sketch.

Mum washing and plaiting my hair in hospital, something she hadn’t done since I was little. This photo is particularly poignant for me, as it was taken the day before my diagnosis.

 

You can read more about my diagnosis of Non Hodgkin’s Lymphoma in my post ‘The One Where They Said I was Going To Die,’ HERE.

 

Preparing For Chemo Hair Loss

 

Chemo hair loss doesn’t happen overnight. For me, it was finding increasing amounts in the plughole and on my pillow each day. The run up to no hair day was seeing Dad try to hide his shock at the clumps on my shoulders after our lunchtime out, and watching Sketch make light of  following me around the house with the vacuum cleaner. And then, on one memorable night, it was sitting in my bath towel and sobbing in Sketch’s arms, as swathes of it cascaded down my back.

 

Wenna – 3 Feb 2012 at 17:49 – Via Facebook

Just back from hospital to spend 3 precious days with my little family before going back in for more chemo… Hair now coming out in handfuls, time to go hat shopping 🙂

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Chemo Hair Loss - Life After Lymphoma Blog by Lady Sketch

Explaining my diagnosis to Al, and what was coming next…

 

‘Hair started coming out in properly large handfuls last night which caused me great upset, hidden behind a matter of fact FB update. We all knew it was going to happen, but somehow this doesn’t make the experience any easier. The chemo has turned it all dry and crispy, and three nights in hospital have given me a couple of large tangles – no idea how to deal, since putting the brush through just pulls more out. Sat on the bed and had a good cry plus big cuddle from Sketch who suggested I text H. Was pretty sure that it being the week end she would have made plans, but bless her heart she text straight back and said of course she would come.

It’s a strange sensation, chemo hair loss. It doesn’t hurt as such, but my whole scalp is tingling and stinging, the way it does when you take your hair down after having it in a tight pony tail all day. Am going to have to wash it before H comes, but still too afraid to tackle the tangles. She says we can cut around them…’ Wenna’s Diary Extract, 4th Feb 2012

 

Approaching Chemo Hair Loss - Life After Lymphoma Blog by Lady Sketch

My Interim Bob Which Lasted About 5 Days…

 

 

Approaching Chemo Hair Loss - Life After Lymphoma Blog by Lady Sketch

 

True to her word, H arrived the next day with her magic scissors and cut my hair in to a bob. Obviously this was only ever going to be a temporary measure, but approaching chemo hair loss in stages felt easier somehow. It also gave us the opportunity to get dressed up and take my hair out for one last family lunch. I look back now and smile at the reverence with which we treated the situation, in stark contrast to subsequent occasions, when chemo denuding my scalp became just another day in the life of lymphoma.

 

Taking Charge Of Chemo Hair Loss

 

It was a week later that it occurred to me exactly how to turn the situation to my advantage. As anyone in the position will tell you, there is nothing quite so dis-empowering as severe illness. Especially cancer. There are just so many unknowns, so I decided that going bald was not going to be one of them. I refused to become the chemo version of the guy who clings to his last remaining hairs in order to comb them over the bald spot. Cancer may well have been robbing me of my hair, but was I going to sit around waiting for that to happen? Was I f*ck!

 

Chemo Hair Loss - Taking Charge of the Baldness! Life After Lymphoma Blog By Lady Sketch

Chemo Hair Loss – Taking Charge of the Baldness!

 

‘It was only ever going to be H who shaved it off. Quite simply, I couldn’t imagine anyone else being there at such an occasion. I asked her to clipper it straight up the middle so I couldn’t back out halfway through. She did me proud, in quiet dignity. There were nearly tears when H pointed out there was over 7 years worth of friendship on that head, but I kept smiling which kept H smiling too. My head feels so light. ‘  Wenna’s Diary Extract, 10th feb 2012.

 

Text to Dad from Sketch. Fri 10th Feb 2012, 14:45 pm

‘Wenna has just had her hair shaved and is still smiling! She’s an amazing person, so strong and in control.’

 

Text to Dad from Wenna. Sat 11th Feb 2012, 8:45 am

‘Al a bit tearful over Disco* but mostly concerned that he never has to see my bald head. PJ resolutely refuses to smile at me unless my scalp is covered, so have taken to wearing my new woolly hat at all times, even in bed. Good job it doesn’t itch, as for the sake of family harmony it looks like being quite a permanent fixture! X’

*They say it never rains but it pours – Disco, the beautiful but brainless family cat had departed this life after drinking anti-freeze that same day.

 

Getting Used To No Hair Day

 

The first time you lose your hair to chemo is a big deal. It’s like a slap in the face at what is already the worst time of your life. It’s a stark and relentlessly visual reminder of what lies beneath.

 

My second experience of chemo hair loss was far less emotional. Just another check in on the road already travelled. So by the third time? I was fed up with the sting in my scalp wherever it touched the pillow and took matters, quite literally into my own hands.

 

‘It was a bizarre scene that played out in the mirror. Me, with a no nonsense expression, grimly determined to stop my head from hurting as I yanked out chunk after chunk of my own hair in the bathroom. The relief was instant and my scalp is much smoother for not using the clippers. Nurse C remarked upon how brave I am, but I genuinely don’t see it that way. Ripping my hair out is simply one more on the list of necessary evils… ‘  Wenna’s Diary Extract, 8th July 2013.

 

Styling Out chemo hair loss

 

I ended up wasting a lot of money on wigs I so rarely wore. Yes, there were occasions when it was nice to have hair, but the scalp itch and hot flushes just weren’t worth the bother. There was also the fact that however I styled it, my hair pieces always ended up at a ‘jaunty’ (read bizarre) angle, not to mention the ever present threat of an errant gust of wind…

 

Allow me to demonstrate exactly what I was up against, via the following photo. Pre no hair day (and steroid moon face) I wouldn’t even have countenanced showing such a hideous photo, but cancer is funny like that. Face up to your own mortality and, trust me, the size of that face (and it’s surrounding features) become pretty much irrelevant…

 

Lady Sketch Chemo Diaries - Chemo Hair Loss

In my head: Debbie Harry
In reality: Ursula The Sea Witch!

 

 

 

 

 

 

 

 

It was Big Sis who came to my rescue by introducing me to some beautiful cotton tubular hats from Seasalt which could be knotted at the end (ideal for when I was shedding) or left open to give the bonce an airing, in an unobtrusive fashion. I was also given a fabulous wide brimmed purple hat by BC which was perfect for hiding under. Sadly it disappeared one day, never to be seen again. I like to think of that hat as the littlest hobo of millinery, imagining it to have moved on to somebody else’s bald head, in their hour of need.

 

I have a very clear memory of walking through a crowd one day (it had to be so very public of course) rocking the purple hat of dreams. The afore mentioned gust of wind whipped the hat off my naked scalp and exposed my ‘shining dome of glory’ to the world. There was an audible gasp from my family and nobody really knew what to do. In that moment I’m not sure I did either. So what else was there to do really, but fall back on the old adage: ‘if in doubt, style it out.’ I believe I laughed. It was fake at first, but soon became genuine, helped along by my eldest galavanting up the road after the hat which stayed tantalisingly out of his grasp. Sometimes the universe takes it upon itself to rip the piss out of you, and you just have to go with the flow.

 

 

Chemo hair Loss: No Hair Don't Care White T Shirt Designed By Lady Sketch

Style Out Your chemo hair loss With A Lady Sketch T Shirt Available To Buy HERE.

And so ends the story of the no hair day. It grew back and fell out and grew back and fell out and grew back. And I spent a good fornight masquerading as a dandelion clock… but that is another post for another day.

 

In the meantime, please do check out my other new ranges of products in my shop HERE.

 

How have you coped with chemo hair loss? Perhaps no hair day is fast approaching and you have a few nifty tricks in hand. Maybe you are styling it out as I write. Whatever your story I’d love to hear from you. Drop me a message in the comments below.

 

This post is dedicated to all of the bald bonces out there – brave, beautiful and batlling. To quote my Dad, via the immortal words of Sir Winston Churchill ‘Keep Buggering On!’

Hope: A Field Practitioner's Guide by Lady Sketch

Hope Springs A Turtle.

Hope: A Field Practitioner's Guide by Lady Sketch

Hope Rainbows We Created During Our Time Of Who Gives A Rock.

So I haven’t written in a while. Those who know me personally will understand why.  If I’m lucky enough yet to have accrued any non family readers (I can but hope), the many complicated occurences in my life recently have diverted my eye from the ball, work-wise.

Putting that into context, in the last 6 months Sketch and I have experienced the following:

  • Al and little PJ beaten up by local thug-life
  • Sketch and I violently assaulted by parents of thug-life
  • Our brand new car tyres slashed
  • An attempt to set said car on fire
  • Threats of violence whilst holding a sobbing PJ in my arms
  • Intimidation tactics designed to scare us out of our home
  • A breeze block through our window
  • A notable absence of Police protection/justice
  • A midnight flit to a place of refuge
  • A new school for PJ
  • Al living in a different place to the rest us for 5 nights a week
  • Attempting to handle some complex behaviours from my traumatised little boy
  • Descent into the deepest depression of my life
  • Lady Sketch hitting the bottle pretty hard
  • And finally, a nasty car accident (not our fault) that I have no idea how we all managed to walk away from.

But before you hit the back button, this post will not be depressing, despite  the catalogue of catastrophe listed above.

Yet another year has nearly passed, and people sympathetically intone that it wasn’t ‘my year,’ (including me, to myself on more than one occasion). But there came a point last week when I had a re-think. Because if I’ve just experienced another 351 days that nobody expected me to have, then exactly whose year was it if not mine?

When we were pebbles deep in our community project Who Gives A Rock (if you haven’t seen it yet, do check it out as it’s guaranteed to raise a smile, especially at Christmas), I had a particular fondness for painting rainbows. These remain the most popular of all our designs and were accompanied by a positive message, which involved us thinking up many different phrases to express the concept of hope. And I feel that now is an especially good time to revisit that strategy.

So I present to you, (friends, family and the people my Dad has persuaded to read my ramblings), Hope: A Field Practitioner’s Guide.

Let Your Hopes Not Your Hurts Shape Your Future

I’m fairly sure that ‘The Sketches’ are not alone in experiencing those runs of bad luck where you are left wondering what the f*ck is headed your way next. I had an interesting discussion with The Mister about luck the other day, which is actually what inspired me to write this post.

Wenna – 12 Dec 2017 at 10:24 – Via Facebook

Sketch and I discussing the concept of luck this morn. I say how lucky we were the crash wasn’t fatal (as reinforced by docs & solicitor) and he says if we were that lucky it wouldn’t have happened in the first place. Neither would the cancer etc…

The uncharacteristically grumpy bugger then goes on to say he thinks some ppl are born unlucky. I dispute this wholeheartedly: ‘I won a brand new Sony Discman in a competition back in 1992, what you chatting about?!’ ‘Hmph’, he says, ‘That’s your good luck quotient used up right there. And I bet you didn’t have any CDs to play on it!!’

Au contraire… how else does he think I know the cheesy old tunes on SingStar so well? I played my Precious Moments CD (free with Dad’s Sunday paper) back to back on that bad boy for a year!! #OurTimeWillCome #MakeYourOwnLuck

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Hope: A Field Practitioner's Guide by Lady Sketch

The Accident Scene

See, that’s the thing about luck – it is so very subjective. Most people would consider luck to have left the building right about the time that a rock comes flying through the window (thug-life could even be arsed to paint it first!!) but the ensuing chain of events has left one little boy feeling incredibly lucky to have been relocated to somewhere pretty fricking special (no location spoilers please, just in case said thug-life can read and has found its way to my blog).

Feeling unlucky to have your entire family crammed into a 2 bedroom house with scant possessions, few work prospects and no idea what the future holds? Speak to the refugees who’ve been relocated from a camp in Lebanon and cannot believe their luck at having a safe place to sleep and fresh running water.

Obviously there are a shit ton of examples I could spout about, but the point is, you really do make your own luck in life, and hope is an essential ingredient in this elusive recipe.

Keep Hope In Your Heart (And Your Toolkit)

Rock Bottom. There’s not much to recommend it really is there?

You wouldn’t give Rock Bottom the full 5 stars on TripAdvisor, yet so many of us find ourselves checking in there on more than one occasion throughout our lifetimes. It’s a dark and lonely place, despite the constant stream of new arrivals, mainly because dwelling on our own misfortune to the exclusion of all others seems to be the order of the day.

But this is exactly when it really does pay to look around and assess the lay of the land, because it is hope that will be your SatNav out of there.

Back in January 2013 I fell rather spectacularly out of remission and was given a 10% chance of survival (you can read about it here) which is pretty sobering news by anyone’s standards. I then spent a truly depressing weekend contemplating the end of days and trying in vain to square it with myself. It was my wonderful Mum who changed my state of mind with one simple sentence.

‘If there’s a 10% chance you will survive, then why shouldn’t you be in that 10%?’

It was like being given permission to hope again. Why the f*ck shouldn’t I? The hope brought with it a swift change in attitude and a happy return to my usual M.O. with the glass in my hand remaining firmly half full. It was hope that fuelled the beacon when I needed it the most, and suffice to say,  I’ve remained in that 10% for the last 4 years and counting…

Without Hope

John Lennon implored us to imagine a world without possessions, but not once did he speak of a world without hope.  And it is a hard concept to grasp, especially when you consider that the fundamental, beating heart of our existence is firmly rooted in just that. Hope.

Hopeless is a word that gets bandied about with little thought for the deeper meaning contained within it, and has therefore developed a flippant context to it. My eldest is always losing things and will forget instructions within 3 seconds flat – ‘You are hopeless,’ we say, ruffling his hair affectionately. I’ve spent 38 years on this planet and can still barely add up. ‘God, I’m hopeless at maths,’ I grin, as I’m counting on my fingers in the supermarket aisle.

But the true meaning of hopeless? Being utterly without hope in any shape or form? Now we’re talking the end of days.

Absent hope, would babies be made? Would boundaries be pushed? Would limits be exceeded? Remove hope from the equation and would any of us really feel inclined to leave our own little patch that we call home?

Hope is a fundamental part of our existence. It drives us to continue, to progress and evolve, even in the face of the greatest adversity, even when others may think all hope has gone.  Hope is the fixed point on the horizon, it fuels our aspirations and enables us to pick ourselves up and carry on. Hope is the air we breathe, the food we eat, the life we live.

Hope Springs A Turtle

Al must have been just 5 years old when he asked to be taken to Hope Springs. I was confused as to where this might be, but loved the idea of an undiscovered part of Cornwall, and was well up for making the trip, if only my little fella could communicate its whereabouts to me.

Al didn’t know how to get there. It was a place he’d heard talked about at nursery and all he really knew was that he wanted to go there and visit the turtle. He looked at me full of excitement as he described this place, and begged me to take him to Hope Springs. Hope Springs A Turtle.

And I’m not sure I can put it any more beautifully than that. I like to think we’ve established base camp close enough to Hope Springs to feel the benefit. Yes I’ve designed a range of carefully hand lettered products and only sold one tiny card (with a commission of 28p), but it is hope that keeps me putting chalk to board regardless. As told by thug-life, we haven’t got ‘a pot to piss in,’ but it’s hope that prevents us from giving in. It’s hope that drags my aching bones (car crashes HURT!!) from my pit each morning, hope for a better day, a brighter future, a happy life for my little family. And it was hope that pulled me from my darkest hour and kicked me up the arse to fight for what we have.

Hope: A Field Practitioner's Guide by Lady Sketch Oh Holy Nightie Card

One of a Selection of my Cards Available To Buy Via Redbubble.

 

When all else fails, hope whispers ‘Give it one more try.’ So keep your ears open.

 

This post is dedicated to the memory of the Penlee Lifeboat in West Cornwall, and the eight-strong crew of volunteers who lost their lives in the ultimate act of selfless heroism.

36 years ago this evening, the Solomon Browne put to sea in horrific gale force conditions, in a determined attempt to rescue 8 people including a pregnant woman and her children, from   stricken vessel The Union Star. Within an hour of the lifeboat launching, she went down with all hands lost, in what has been recorded as the worst maritime tragedy in Cornish history.

The famous christmas lights of Mousehole Harbour will be dimmed for an hour tonight, in remembrance of those brave souls who never came home.

 

 

 

 

 

 

Lady Sketch Chemo Diaries The One Where They Said I Was Going To Die... Part 1. The One Where They Said I Was Going To Die Part 1

Lady Sketch Chemo Diaries – The One Where They Said I was Going To Die… Part 1.

Lady Sketch Chemo Diaries The One Where They Said I Was Going To Die... Part 1. The One Where They Said I Was Going To Die Part 1

‘An Ellie Goulding song plays on the radio with a beautiful melody which stops me in my tracks. Ellie sings ‘It’s OK to be afraid.’ This reduces me to tears. Sketch puts his arms around me and we cry together for a while. We feel like she is singing directly to us. It’s OK to be afraid because it is and we are. Sketch says he is afraid of me dying. For once I cannot find the words to reassure him…’  Wenna’s Diary Extract, 5th March 2013.

 

i’m a mixed media, chalkboard and mural artist, based in north cornwall.

(Portfolio available to view HERE…)

I am also the author of Straight talking blog ‘Life after lymphoma – an irreverent look at remission and commissions.’

For more about Lady Sketch, have a read of my other posts HERE.

Lady Sketch Chemo Diaries The One Where They Said I Was Going To Die... Part 1

 

 

Falling Out Of Remission

December 2012 saw me 4 months in remission from Non Hodgkin’s Lymphoma. The boys and I were spending a quiet Christmas in Bude with my parents. Sketch and I had parted company that summer and I was balancing my broken heart with trying to ‘get the show back on the road,’ for the boys AND consider my next move. Now the lymphoma was over and done with I was planning to go back to work and pondering a house move as a fresh start for all of us.

You can read about my Non Hodgkin’s Lymphoma diagnosis HERE

It was Boxing Day when I noticed the tip of my thumb had gone numb. I put it down to the thumb ring I was wearing at the time and duly removed it.

Wenna – 3 Jan 2013 at 09:11 – Via Facebook

Seen this and quite liked the format…

10 things I thought I’d never do in 2012

  1. Lived in a different place to my children for weeks at a time.
  2. Wore an engagement ring.
  3. Considered and accepted that death may well be just around the corner.
  4. Had my head shaved.
  5. Dealt with vomit without panicking for 10 day stretches at a time.
  6. Punched someone in the face and didn’t regret it.
  7. Removed my engagement ring.
  8. Weaned myself down from 169 mg of Morphine a day to none.
  9. Became a single mother again.
  10. KICKED CANCER IN THE ARSE!!!

10 things I intend to do in 2013:

  1. Tell my children how loved and appreciated they are EVERY day.
  2. Get on the road.
  3. Write my book.
  4. Relocate.
  5. Teach PJ how to walk and talk.
  6. Show Al how to see the good in the bad.
  7. Move on from the past.
  8. Eat well and grow strong.
  9. Get another tattoo.
  10. LIVE!!!

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Wenna – 9 Jan 2013 at 10:35 – Via Facebook

And the big house clear out continues…been reduced to tears this morn going through all of the get well cards you lovely people sent to me last year. A timely reminder of how much worse things could be!

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The best laid plans and all that… fate clearly had other ideas however. By the time I saw Dr K (my consultant) for a scheduled appointment in January, my hand, arm and shoulder were numb and growing weaker by the day. I was sent for an emergency MRI that afternoon with results due a week later.

An Uncomfortable Meeting

My next meeting with Dr K proved to be an uncomfortable one. They had found ‘white matter’ inside my spine and had no clue what it was. I pushed every which way for answers, but he was unable to give them. Could it be lymphoma returning? It could be anything. I needed another CT and another MRI scan plus an appointment with neurology.

I thanked Dr K for being honest in the face of my incessant questioning. He held my gaze and gently informed me he would ALWAYS be completely honest and open with me. There was the sense that he was genuinely perplexed, and we all came away feeling nervous.

Later that day it occurred to me that, in the numerous meetings I’d had with Dr K, I’d never once seen him look as uncomfortable as he did that day. A cold shiver accompanied this thought.

Wenna – 16 Jan 2013 at 18:14 – Via Facebook

Survived 45 mins in the MRI scanner today, after TWO sedatives… Good job I always carry them in my handbag! Pretty battered now mind…

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Wenna – 21 Jan 2013 at 21:48 – Via Facebook

Pain-free but slightly dopey. Tramadol 🙂

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Wenna – 31 Jan 2013 at 16:31 – Via Facebook

Completely fecked off to be back in hospital and away from my boys. Awaiting an MRI to confirm diagnosis. Fingers still firmly crossed, but the overriding feeling seems to be ‘here we go again…’ Apparently someone forgot to tell 2013 it was supposed to be our year 🙁

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‘After a week of anti-viral drugs which have made me horrendously sick, viral inflammation is ruled out. A letter arrives to say MRI will take place in a fortnight, but there is no way I can wait that long the rate at which my leg is weakening.

There are disagreements between Haematology and Neurology. Nobody really seems to know what is happening to me. Dr K says I need to be admitted to get the MRI done more quickly. If this is what needs to happen then so be it.

At this point it’s dawning on me: this is serious. I’m ill again.’  Wenna’s Diary Extract, 31st Jan 2013.

 

Lady Sketch Back In Hospital

Nervously Awaiting My Second MRI.

 

Hiding In The Hospital

By January 2013, Sketch and I had rarely spoken since the summer. As with a lot of break ups, things were less than amicable and feelings were running high. He had moved out of Truro and was seeing the boys sporadically.

I contacted him over Facebook to tell him I was awaiting another diagnosis and I was pretty sure it would be shit news. I wasn’t sure what reaction to expect given how the land lay between us, and was amazed by his response. He was gutted and instantly pledged his support.

Early Saturday morning Sketch rocked up on the ward, my MRI having taken place the day before. By then I knew we were headed into another shit storm. That morning they had stopped the anti-viral medication and put me on to steroids, which we’d been told would be counter-productive if it was a neurological issue. All signs were pointing towards lymphoma.

 

‘Dr P is on the prowl and I feel a sense of foreboding. Somehow he is always on shift when there is bad news to be delivered. I desperately want just 1 more day in ignorance, so Sketch puts his last pound into a wheelchair and takes me off the ward. We spend the day hiding out in the bowels of the hospital where only the porters go.

Sketch and I discuss our childrens’ future, reaffirming the plans we had for their upbringing. There are tears between us and Sketch tells me he is utterly terrified of losing his best friend. We return to the ward to find out that Dr P has been 3 times before going home for the night. There is a bed for me on Lowen. This is the cancer ward, which can mean only one thing.

Sketch moves me and my belongings down there, just as he did the first time. we find it an emotional process, knowing tomorrow will bring bad news. Sketch says he is here for me, if I want him. I find that I do. He is the only other person with first hand knowledge of exactly what lies ahead of us. Much as I hate to rely on him after everything that’s gone on, I need him.’ Wenna’s Diary Extract, 2nd Feb 2013.

 

No Point Of Reference

Sunday brought 2 visitors which was a happy distraction, until Dr P arrived. They were politely dispatched to the day room whilst the news was delivered.

The lymphoma was indeed back, this time inside my spinal cord, which is actually so bloody rare that they had no point of reference. It had also metastasized back to my liver. I had a 20% chance of survival this time.

Dr P filled me in on my treatment options. At that time, they were radiotherapy, which might turn me into a vegetable, or chemotherapy which might paralyze me. The tumour had migrated to the cervical spinal cord, a bit too near the brain stem for our liking. Radiotherapy that close to the important bits would likely drop my IQ and alter my personality beyond all recognition. So what about chemo? Well that would be administered via a port that would need to be installed into my spine at Derriford Hospital. I didn’t need him to impress upon me how dangerous that procedure would be.

Dr P also offered me the option to do nothing, meaning I would die at some point over the next 8 weeks. It wouldn’t be a case of 2 months then slipping peacefully away, he explained gently. There would be a rapid loss of mobility, speech and eventually, vital function as the lymphoma overwhelmed my internal organs. I would end my days paralysed, incontinent and being fed through a tube, potentially with the brain still in good working order. A prisoner in my failing body, not what you might call a desirable outcome.

 

‘The family muster at my bedside and it is all horrific. The first time I’ve ever seen Mum fall apart. There is frequent sobbing and so much fear. I have basically been delivered a death sentence, or so it feels. I ask Dr P what he would do in my position. His reply? ‘I would do nothing.’

A consultant at the top of his game would rather die than face the prospect of the treatment options I have available to me. But he doesn’t have kids. And I do. I refuse to give up on them, and tell him that doing nothing is not an option for me.’ Wenna’s Diary Extract, 3rd Feb 2013.

Much ADO About Chicken

The practicalities of daily life interrupted our misery and brought some much needed comic relief via Mum: ‘What the f*ck am I supposed to do about the f*cking chicken?!’

It transpired that Mum had been in the middle of preparing a sunday roast for the family including my boys, in Bude. When the news hit they had left for Truro immediately, complete with half cooked chicken on board. This caused much consternation and mirth, bordering on hysteria – a welcome opportunity to focus our thoughts elsewhere. The family left to collect the boys from my brother-in-law and finish off the roast in my oven.

I had contacted Sketch who arrived as they were leaving. TS clasped his hand on the way out and implored Sketch to ‘do his best for me.’ I relayed  Dr P’s news, and we cried together.

 

‘I’m acutely aware that as soon as Sketch leaves, I will be alone for the first time today, facing the harsh reality that I’m expected to die soon. Sketch clearly knows this too, and there are tears before he goes. He cuddles me and promises to return soon, before going to meet his taxi home.

5 minutes later I’m sitting alone and terrified on my bed, when the curtain moves. Sketch pops his head around and tearfully tells me that he cannot bear to leave me tonight. This is exactly what I need to hear. He lies on the bed next to me and we cry at the unfairness of the situation. The next few hours are passed looking at old photos on our phones and reminiscing. Happy, distracting memories of our time together. I drift off into an uneasy sleep shortly before sunrise. When I wake a couple of hours later Sketch is still there. He hasn’t let go of my hand all night and I realise, in a moment of absolute clarity, that I’m still in love with him.’ Wenna’s Diary Extract, 3rd Feb 2013.

 

Why Shouldn’t I Be In The 10%…?

The next day brought Dr K and CZ (my chemo nurse) to my bedside. We discussed treatment options which were more viable, after the horrible options of the previous day. Dr K proposed 17 days of radiotherapy which would neither drop my IQ nor turn me into a vegetable. This would be followed by high dose chemotherapy delivered through another line in my chest. No spinal ports required for which I remain eternally grateful.

They stressed that the doubling up of the chemo would be completely f*cking hideous, but necessary, as the tumours had to be clobbered hard. Dr K described the situation as ‘potentially catastrophic.’ The concept of quality time was discussed, and we agreed that if treatment wasn’t working, I would need to be told sooner rather than later.

This was the day that my odds of surviving plummeted to a measly 10%. You wouldn’t bet your life savings on it, yet my life was, quite literally, in their hands.

And so I agreed to the treatment regime. Dr K and CZ exchanged a knowing look. ‘We knew you would,’ they smiled.

‘If the time I have left cannot be prolonged by chemo, then I will want to stop the treatment. I will need to make the most of what time I have left with my boys and my family.

It is agreed they will scan reasonably early to assess this. Dr K is a humanitarian – he understands what is at stake here. Terrifyingly low chance of beating this, but must remember that somebody has got to be in the 10% and why shouldn’t it be me? It’s not like this treatment is being offered to me out of the goodness of their hearts. They clearly believe there is a possibility of it working otherwise, right about now I’d be on my way home with steroids, pain relief and their best wishes…’ Wenna’s Diary Extract, 3rd Feb 2013.’

 

Lady Sketch Falling Out Of Remission

At Home Waiting For Radiotherapy.

 

Preparing For The Worst While Hoping For The Best

And so shortly afterwards I was sent home, with steroids and pain relief, but also with a week’s grace before the 17 consecutive days of radiotherapy were due to commence. My situation was so shitty and it was then that Dad bought me my first leather bound journal.

‘You need to write. Letters to your boys, your happiest memories, a record of what is going on, anything… Just write now, while your brain is in full working order…’

And write I did.

“…God, this is such an odd situation to be in. Sometimes I can sit here with complete clarity and know that I’m going to die soon. It’s like I can accept this info with no panic or fear, and just know that it will happen. Other days I am literally paralyzed with terror.  What will it be like to just not be here anymore? How can I even begin to get my head around that concept…?

Mostly I firmly believe myself to be in the 10%, and am positive that the worst will not happen. But it is a conscious effort to stay in that place, especially while preparing for the end of my life just in case… each minute is a balancing act.” Wenna’s Diary Extract, 5th Feb 2013.

 

By this point I was using Facebook as a mini- blog. It was a pretty effective way of keeping everybody updated with the latest goings on, reaching out for support and getting things off my chest.

Wenna – 5 Feb 2013 at 15:30 – Via Facebook

Well I got my tattoo wish for 2013 anyway…nothing fancy, just 2 little dots on my back for the radiotherapy boffins to aim at when we commence the deep & crispy treatment next week. Might ask for aioli on the side. Yum! 😉

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Wenna – 6 Feb 2013 at 23:30 – Via Facebook

What’s on my mind you ask FB? Finding out my cancer is back, the prognosis is shit & I’m praying for a frickin’ miracle…

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Wenna – 10 Feb 2013 at 14:30 – Via Facebook

You guys are amazing. Thank you so much for all the lovely messages and supportive words. It all means the world to me and my somewhat bemused by facebook parents who are now beginning to see it’s not always the work of the devil!! Happy Sunday To You All xxx

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Extract from a letter to one of my best friends, to be given to them if the worst happened. (A bit dramatic in places but to be fair, I was hopped up on steroids and contemplating my own mortality!)

‘…As you know, we are in the 10% and I fully plan to be reading this letter with you in years to come, brushing it off as a near miss and getting on with life. But just in case it all does go tits up, I want you to know how much I adore you. I really do! Your sense of humour, the way you pick yourself up & dust yourself down, how kind and sweet you are to other people… I also love the fact that you’ve achieved that major thing I’ve thus far never quite managed – being a real, responsible grown up with a proper job and stuff!

I don’t know the rules from hereon in. I really wish I did. I don’t know if this treatment will work, but I DO know that you all have my word I will fight with everything I have. If I get the choice, I’m really not going anywhere. There will never come a time when I choose to give up, because I want to finish the job I started when I had my babies.

If I lose the battle, it’s someone or something else’s decision, not mine. Please make sure my boys know that I would never have given up on them. Ever. How could I ever leave them by choice?

As for what comes afterwards, I don’t know the rules there either. I don’t know if I’m allowed back to visit or watch you all. I promise not to turn up unannounced and scare the shit out of you, ok?!

If you ever want to find me, I’ll be at Droppy Nose Point on Bryher, or back in Stratton, checking in on my boys. You can also catch me on that bench just past Sainsburys that looks out over Truro and the cathedral. It’s the best view in town, and you know how Wenny likes the best!!

Take good care of you my dear friend. Trust in RCH, the haematology team, Sketch and the higher power of your choice, to take good care of me.

‘I’ll see you on the dark side of the moon.’ 

Wenna xxx’

 

Lady Sketch Keeping Up Appearances.

A Quick Pedi Before Radiotherapy Started 😉

I’d love to hear your experiences of the Big Bad C – survivors, sufferers, friends, family – drop me a comment below. I will reply.

If my big old argument with lymphoma has caught your interest, why not give me a cheeky follow? I don’t harangue you with boring nonsense and spam mail makes me swear even more than I do already… your email address is safe with me!

Don’t forget to have a nosey at the rest of my blog HERE. It’s not all depressing I promise 🙂 Or if you’ve heard enough about being ill, check out my PORTFOLIO to see what I’ve been doing with my second remission.

 

 

Lady Sketch Chemo Diaries The One With The Non Hodgkin's Lymphoma Diagnosis

Lady Sketch Chemo Diaries – The One With The Non Hodgkin’s Lymphoma Diagnosis.

Lady Sketch – i’m a mixed media, chalkboard and mural artist, based in north cornwall.

(Portfolio available to view HERE…)

I am also the author of Straight talking blog ‘Life after lymphoma – an irreverent look at remission and commissions.’

For more about Lady Sketch, you can check out my other posts HERE.

Lady Sketch Chemo Diaries The One With The Non Hodgkin's Lymphoma Diagnosis

 

Pre Non Hodgkin’s Lymphoma Diagnosis…

In November 2011 my second son PJ was born, to myself (Wenna) and my partner (Sketch).

Arriving via C-Section at The Royal Cornwall Hospital Treliske (RCH), PJ was welcomed into the world a week early. A complicated and difficult pregnancy had seen me endure escalating (and unexplained) pain, limited mobility and chronic insomnia. It had been a shit time for all concerned, and we were ecstatic to finally meet the little dude. A Non Hodgkin’s Lymphoma diagnosis could not have been further from my mind.

Baby PJ thrived in the weeks that followed, but my health deteriorated rapidly. Excruciating back pain, loss of appetite, night sweats and bouts of uncontrollable  shivering left us fearing something bad was afoot.

Multiple Tests, Pokes and Prods

Cue countless visits to our GP, multiple blood tests and three courses of strong antibiotics for a suspected infection. Round the clock pain relief barely touched the searing agony in my spine, and I was starting to lose my shit.

Then my milk dried up, and PJ had to be unceremoniously dumped from the booby bar. Enough was enough. With Christmas gallivanting towards us and two boys to look after, I could barely function. The baby was blissfully oblivious, but big bro Al was acutely aware that Mummy wasn’t right. At this point, barely firing on 1, let alone the full 4 cylinders required to ‘do’ Christmas, we decamped to the health park.

On 23rd December 2011 I broke down in terrified tears to my GP and begged him to help me.  He promptly dispatched me to the Acute GP at A&E. Non Hodgkin’s Lymphoma Diagnosis minus 5 weeks…

To quote my Dad, ‘christmas fell over from this point forwards…’

The Chemo Diaries

The Lady Sketch Chemo Diaries are an open and honest account of the ensuing 2 years and beyond. Told through Facebook, Emails, Texts, Cards, Letters and Diary Entries.

Read on to find out more about my Non Hodgkin’s Lymphoma Diagnosis…

 

Lady Sketch Chemo Diaries The One With The Non Hodgkin's Lymphoma Diagnosis

 

 

 

Pregnancy And Me

My first pregnancy aged 25 was an absolute breeze. Glowing skin, serene attitude, cute little bump – the works. Al was such an adorably easy baby, that it didn’t take much persuasion to provide him with a sibling 7 years later.

‘LOVE being pregnant,’ I enthused to Sketch as we cooed over the pink lines on the pee stick. ‘No hormonal harridans here – this is going to be awesome…’

Hmph…

Wenna – 13 Jun 2011 at 16:14 – Via Facebook

Just heard baby’s heartbeat for the first time – strong & loud and brought a little tear to my eye 🙂

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Wenna – 8 July 2011 at 21:42 – Via Facebook

If I play music into my belly, the baby dances!

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I’d Rather Crap Into My Hand And Clap!

It was during my 4th month of pregnancy when things started to get shitty.  As is often the case with subsequent pregnancies, the belly popped out early. Only this time it just kept on growing. By my 5th month I was vast enough to attract commentary from passing strangers, and by the 6th? Put it this way, Sketch and I had a genuine fear there was an extra stowaway on board.

Having never been what you might call skinny, this extra weight took its toll. Back ache, leg ache, hip pain, heartburn, sciatica, swollen ankles… I entered my 7th month of pregnancy unable to sleep, barely able to walk and pretty hacked off with life.

It was my existing in this permanent zombie state that prompted a very dear (childless) friend to state:

‘I’d rather crap into my hand and clap than be where you are right now!’

She had a valid point.

Non Hodgkin’s Lymphoma Diagnosis Minus 5 Months

Wenna – 4 Aug 2011 at 18:40 – Via Facebook

Mildly concerned by how long it took us to plod home from Rosedale today, complete with little rest on petrol station wall to ease the aching back! Surely shouldn’t be this hard going at only 6 months?

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Wenna – 12 Sep 2011 at 14:29 – Via Facebook

Enjoying a bloody good pregnancy RANT with my friend T… it’s over messenger so no chance the baby will hear me!!

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Wenna – 14 Oct 2011 at 04:13 – Via Facebook

Sleep, sleep, my kingdom for some sleep 🙁

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Pregnancy pre non Hodgkin's Lymphoma Diagnosis

By this point, I was unable to get out of chairs unaided. I could walk pathetically short distances and the only footwear flexible enough to accommodate my pasty shaped feet was knitted!

‘Wow! You’re having such a big baby!’

These words prompted much gritting of teeth and fake smiling at the numerous people stating the bleeding obvious on a daily basis.

Having been concerned the baby was small-for-dates, my obstetrician did a complete about turn. Now the worries were that he was going to be too big, plus the knock on effect on my physical and emotional wellbeing.

There is a very good reason why some cultures use sleep deprivation as a form of torture. By 8 months I was ready to crack. My reprieve came at 39 weeks when PJ was delivered safe, well and not the gargantuan I’d begun to imagine. The misery was over and our little family was complete at last.

Wenna – 18 Nov 2011 at 19:22 – Via Facebook

Baby PJ arrived safely at 11:30 am weighing 7lb 11 oz. We are so very lucky xx

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The growing Realisation…

    Wenna – 29 Nov 2011 at 18:39 – Via Facebook 

It has been 12 days and every single bit of my body still aches and throbs… feel like I’ve been hit by a bus.
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Wenna – 30 Nov 2011 at 20:11 – Via Facebook

So in love with my boys. Still aching all over tho. WTF is up with my body and when will it realise I’m too busy for this nonsense?!
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Wenna – 3 Dec 2011 at 08:23 – Via Facebook

Wondering if it’s normal to get worse before you get better after a C Section? Certainly didn’t feel this horrific 7 days ago 🙁
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Wenna – 8 Dec 2011 at 10:11 – Via Facebook

PJ is 3 weeks old now. It’s time to rejoin the land of the living but still feel like hammered shite. Antibiotics not working. WTF is wrong with me? 🙁
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Wenna – 9 Dec 2011 at 20:18 – Via Facebook

V sad the breastfeeding stopped before we had planned. At least PJ is still thriving. Gutted tho.
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Wenna – 14 Dec 2011 at 10:12 – Via Facebook

Anyone on here ever seen an Osteopath and if so did it work? OUCHY 🙁 Pain killers not touching it today.

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Wenna – 17 Dec 2011 at 23:06 – Via Facebook

Completely fed up with feeling rubbish… it’s been over 4 weeks now, christmas is coming, I have 2 children and not enough time to be ill.
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Wenna – 20 Dec 2011 at 12:51 – Via Facebook

Please let this set of blood tests turn something up before I go crazy… taking so many pills I nearly rattle. God bless my gorgeously well behaved boys.
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Christmas At RCH Treliske

Wenna – 23 Dec 2011 at 13:58 – Via Facebook

Less than thrilled at the prospect of going into hospital this aft but fingers crossed I’ll be out and better in time for Crimbo. Really don’t want to miss my bigger boy opening all of his pressies. Hoping for a christmas miracle!
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Wenna – 23 Dec 2011 at 20:11 – Via Facebook

Breaks my heart to be separated from my baby and the prospect of not being with Al on christmas day. Stuck in hospital while they figure out wtf is wrong with me 🙁
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Wenna – 24 Dec 2011 at 10:13 – Via Facebook

Awaiting MRI scan to confirm infection in spine. May need surgery. A bit frightened 🙁
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Text to Dad. Christmas Eve 10:05 am

‘In same place. Awaiting MRI. May need to go to Derriford Hosp for surgery on spine. Very frightened: not supposed to use mobile, but pls can you call RCH and ask for Medical Admissions 1?  Mum is written down as next of kin. Love you X’

High Level Infection

So things were looking pretty bleak by this point. Nobody wants spinal surgery for Christmas. It soon became clear that going home wasn’t going to be happening any time soon.

A large part of my Christmas day was spent persuading nurses as to how much pain I was in. This was met with only varying degrees of success and it felt like the agony was never going to end. I drifted in and out of consciousness and tried to eavesdrop on what was discussed at the nurse’s station. Words like ‘sepsis’ and ‘dangerously high level infection’ were bandied around, but by this point my head wasn’t able to leave the pillow.

My Non Hodgkin’s Lymphoma Diagnosis

The days and nights became a blur, but I am reliably informed that it took 5 weeks from admission to diagnosis. Evidently it was such a backwards presentation, I had some of the brightest minds in the hospital scratching their heads.

I moved ward 6 times, had my phone stolen, screamed in 2012 in excruciating pain, had 2 blood transfusions and slept around 18 hours a day. There were 3 biopsies, another MRI, a CT and an ultrasound. Finally they got to the bottom of it, and a meeting was set up with my parents and me, on Friday 13th January.

A notable date for the superstitious among us, and the irony was not lost on me that this should be the day my world tilted forever on its axis.

‘You have stage 4B Non Hodgkin’s Lymphoma. It has likely been lying dormant, and was activated by the pregnancy. This can only be a good thing, as it has not invaded your T cells, which might have happened otherwise. It is highly likely that your son has saved your life!’

To read more of the Chemo Diaries, and for more about life after My Non Hodgkin’s lymphoma diagnosis, why not subscribe to my email list? I won’t bombard you with crap and you will be the first to know when new posts are published!

Surviving Lymphoma

Surviving Recurrent Non Hodgkin’s Lymphoma, A Stem Cell Transplant and A Life Reboot.

Surviving Lymphoma

i’m a mixed media, chalkboard and mural artist, based in north cornwall.

(Portfolio available to view HERE…)

I am also the author of Straight talking blog ‘Life after lymphoma – an irreverent look at remission and commissions.’

For more about Lady Sketch, have a read of my other posts HERE.

 

How It All Kicked Off…

Christmas 2011, and we were sitting for a family photo, our youngest child a matter of days old in my arms. Within a few days I was crammed into an MRI machine, awaiting staging for Non Hodgkin’s Lymphoma and facing up to the prospect of a pretty hairy trip down Shit Creek.

 

Lady Sketch Life After Lymphoma Blog. Hand Painted Shit Creek Survivor Sign #LSKLettering

Personal Disaster Can Give The Best Inspiration…

 

Non Hodgkin’s Lymphoma

It was stage 4B Non Hodgkins Lymphoma. Whilst there is no stage 5, we were told it was eminently curable and treatable, but to expect a rough ride. Hmmm. This turned out to be the biggest understatement since Sir Cosmo Duff Gordon described the sinking of the RMS Titanic as ‘rather a serious evening, you know…’ but for now I’m hanging on to my gory stories of chemo horror & unimaginable beastliness for another day 👌

Lady Sketch and Baby, With No Hair, During Chemotherapy.

Halfway through chemo the first time around.

After six months of intensive chemotherapy and in grateful remission, I bounced back quickly and cracked on with life. We consigned the Lymphoma to the shitty annals of history and it didn’t enter my head that it might come back. So when my left arm went numb another six months later I visited my doctor fully expecting it to be a trapped nerve.

Get Your Ducks In A Row

This time the news was fairly horrific with Lymphoma growing and metastasising all over the shop and a twenty percent chance of survival. This swiftly plummeted to ten percent once we knew exactly what we were up against. I was told ‘There is great potential for catastrophe, you need to get your ducks in a row.’

Evidently someone had forgotten to tell 2013 that it was going to be our year… This time it was much worse because Lymphoma were growing inside my spinal column amongst other places and causing havoc within the central nervous system. In short, the walking gear was packing up and I was in shit order.

This time we started with Radiotherapy. It seems like the kinder alternative (much less vomit and you get to sleep in your own bed) – it’s not! Being strapped face down to a table, in a mask moulded to your skull, is not fun for the claustrophobic.

Within forty eight hours my walking gear really did pack up, with bladder reliability shortly behind it. The lowest point of that period was being pushed everywhere in a wheelchair with rustling tenna-lady knickers and steroid moon-face. It would have been around this time that Mister Sketch and I invented a rather non PC game, ‘Who is worse off than you right now,’ which diffused many tense moments and made us laugh in the midst of misery.

It Gets Worse…

Three weeks of radiotherapy was followed by more chemo and the few ups and numerous downs this entails. Chemo-puke-chemo-puke-home-puke-infection-hospital-recover-chemo-puke… and so the cycle continued.

Then came the news that treatment wasn’t working and they believed my Lymphoma to be chemo resistant.

It was a devastating blow to say the least. There had been talk of getting me into remission just for long enough to have a stem cell transplant. My own previously harvested stem cells were ready and waiting to be defrosted, but now I wasn’t a suitable candidate. So I went home  on the Friday and planned my funeral. I wrote letters to my boys for the future, tried to put my affairs in order and cried a lot. I believe there was also swearing.

Come Monday, my consultant had returned from an overseas course, with news of a new, experimental treatment. It involved using conventional oncology within haematology (basically using Cancer drugs to treat Lymphoma, which is actually a blood cancer). Did I want to give it a try?

Obviously I said yes and embarked upon what may well have been the oddest few weeks of my life. The drugs made me feel like the top of my head was melting. Any social activity was abandoned while my brain checked out and I wandered the house dazed and confused…

Lady Sketch With An Anti Cancer Message Writing On Her Bald Head In The Middle of Chemotherapy for Non Hodgkins Lymphoma

Bald Bonce

LYmphoma to Stem Cell Transplant

But it did the trick. Come September, Mr Sketch and I were headed over the bridge to Derriford Hospital in Plymouth for my Stem Cell Transplant, with strict instructions to return me to the correct side of the bridge should all go tits up. There was a high chance I wouldn’t survive treatment and I wanted to make bloody sure I was back in Cornwall if the worst happened.

It didn’t however, and within seven days I was transferred back to the Royal Cornwall Hospital Treliske for six weeks in isolation. Again we were warned to expect the worst. It certainly wasn’t pleasant, but I beat another set of odds and was discharged early, home in time for Halloween with my kids ❤

Remission

As I write, I am pleased to say that October 2017 marks my fourth year in remission. I’m left with mobility & mental health issues and, not gonna lie, life really is hard. BUT, it’s my life, I fought bloody hard for it and it’s pretty sweet.

I’m still making sense of it all and adjusting my compass so I can navigate this new and unforseen bend in the road. Because that is all it is really.

Life has a habit of flinging us around sharp corners and down steep drops, but like my dad says, once you’ve slipped down as many snakes as I have, sooner or later life will provide you with a ladder.

You can read more about life after Lymphoma HERE.

Why not give me a cheeky follow for an irreverent look at life in remission… there may be swearing…

 

 

 

Lady Sketch Life After Lymphoma

Life After Lymphoma Is My Ultimate Work In Progress.

My life after Lymphoma is a work in progress. Like unfinished projects and half forgotten ideas, waiting for motivation or inspiration and in need of a fresh approach. 

Life after Lymphoma really is bloody hard… but it beats the shit out of the alternative, right?
Yup. And for each of us that survives there are countless others lost along the way. It IS important to remember how f*cking lucky we are ☘☘☘ but it’s also cool to admit that life after Lymphoma is anything but straightforward.

Life After Lymphoma

For me, life after Lymphoma is not the calm after the storm. It isn’t as simple as picking up the threads and cracking on where I left off. Life after Lymphoma may well be exactly as I left it, but I am very much not.
Life after Lymphoma is a complicated old business. It was gathering my component parts, assessing the damage and jamming the pieces together again as quickly, but not necessarily accurately, as possible. It is an acceptance of new limitations and unlearning things previously taken for granted.

Life after Lymphoma has been perceiving every ache, pain, lump and bump with the utmost trepidation. It is an emotional circus, balancing euphoric excitement at planning for an unexpected future, with the relentless, damaging whispers of survivor guilt.

Life after Lymphoma is a trip. It’s sweet and hard-won and unpredictable and exciting and terrifying. It is unknowable.

Lady Sketch and Baby, Life After Lymphoma Is My Ultimate Work In Progress Cancer Blog

In hospital awaiting treatment.

 

Remission

I went into my first remission in June 2012, six months after a diagnosis of stage 4B Non Hodgkins Lymphoma. I was one of the lucky few who manage to bounce back relatively easily after treatment. Sure, I had the energy of a supercentenarian and an immune system barely in the black, but the transition could have been much worse. Maybe I was too complacent, but in my head, the Lymphoma was consigned to the past. I had all kinds of shit to be cracking on with. It didn’t occur to me that Lymphoma might have other ideas. 

Lady Sketch - Life After Lymphoma Is My Ultimate Work In Progress. Cancer Blog

Me In Remission, Being Blissfully Unaware…

I came out of remission six months later when the Lymphoma re-invaded, mob handed and hell bent on mass destruction. Within a few short weeks I was in a wheelchair, with a complete loss of independence and 10% survival odds. How to rock my regrowth and shifting the steroid weight suddenly plummeted to the bottom of my worry list.

Stem Cell Transplant

It was only after the Stem Cell Transplant in September 2013 that we were able to fully assess and process the fallout from life’s latest barrage of bitch slaps.

Read more about the diagnosis and treatment HERE.

First came the mobility. Tumours growing inside my spine had knackered various nerves and processes integral to walking. This meant the legs that had supported me unfailingly (give or take the odd boozy mishap) since 1979, were now somewhat compromised. In fact, my whole left side had proven itself fit for light duties only, and seemed to be pushing for early retirement. Would this improve with time and determination? There was no way of knowing, but in all honesty I was so f*cking relieved to still have my head above ground that I didn’t stress massively.

Then came the menopause. Fifteen to eighteen years early. No need to dwell, but suffice to say, it’s waaay worse than just contemplating the end of your baby making days.

Lady Sketch - Life After Lymphoma Is My Ultimate Work In Progress, Cancer Blog

Between Chemos, at home with my fam-a-lam ❤

Hidden Damage

Next arrived a brand new catalogue of concerns. The hidden obstacles; equally as debilitating but minus the outward symptoms. Nothing that could be zapped with radiation or shrunk into oblivion with cytotoxic chemicals – The Head Stuff.

A simmering soup of anxiety, memory loss, flashbacks, catastrophising and much irrational flapping about the children. Henny-Penny has my respect, it is supremely stressful waiting for your own personal sky to fall in. For the first time in my life I encountered something I couldn’t talk about. This was a foreign concept to a chatty-arse like me and therefore even more unsettling.

So I dealt with it in time honoured tradition. I threw a birthday party, got pissed with my mates and re-launched into the party lifestyle. It helped that 2015 was a warm summer and we spent long hours in the garden entertaining while I worked on the mural.

OK, I’ll be honest, I may well have done a bit of a Solange in my efforts to ‘drink it away,’ but as we all know, booze is not the answer to life’s problems (although it does impart a certain rosy hue) and a year later nothing had changed except the size of my jeans.

Lady Sketch - Life After Lymphoma is my ultimate work in progress. Cancer Blog

 

Post Traumatic Stress Disorder

It took me two and a half years to ask for help. And it wasn’t until I did ask for help that I realised exactly how much I had needed it. That was in 2016 when I was diagnosed with Post Traumatic Stress Disorder (PTSD) and shit finally started to fall into place.

It is now the beginning of 2017. I’d love to tell you that everything is back to normal, but that would be a big old fib. Continue reading