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