‘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 Artist From North Cornwall
Check Out My Chemo Kit & Caboodle Range Here.
I am also the author of brutally honest and irreverent blog ‘Art, Anxiety and life after lymphoma.’
For more about Lady Sketch, including A diagnosis of stage 4b non hodgkins Lymphoma shortly after the birth of my son, check out my blog.
Falling Out Of Remission
December 2012 and I was four months into recovery from a brutal diagnosis of Non Hodgkin’s Lymphoma shortly after PJ was born.
The boys (seven & just turned one) and I were spending a quiet Christmas in Bude with my parents. Having parted company with Sketch that summer, I was balancing my broken heart with trying to ‘get the show back on the road,’ AND consider our next move. I had lymphoma behind me, and our future was ready to be built. Falling out of remission was about as far from my thoughts as flying to the f*cking moon.
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
- Lived in a different place to my children for weeks at a time.
- Wore an engagement ring.
- Considered and accepted that death may well be just around the corner.
- Had my head shaved.
- Dealt with vomit without panicking for 10 day stretches at a time.
- Punched someone in the face and didn’t regret it.
- Removed my engagement ring.
- Weaned myself down from 169 mg of Morphine a day to none.
- Became a single mother again.
- KICKED CANCER IN THE ARSE!!!
10 things I intend to do in 2013:
- Tell my children how loved and appreciated they are EVERY day.
- Get on the road.
- Write my book.
- Teach PJ how to walk and talk.
- Show Al how to see the good in the bad.
- Move on from the past.
- Eat well and grow strong.
- Get another tattoo.
36 Likes 24 Comments
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!
9 Likes 5 Comments
The best laid plans and all that… fate clearly had other ideas however. By the time I saw Dr K (my consultant) for my January check up, my hand, arm and shoulder were numb with mobility decreasing by the day. I was sent for an emergency MRI that afternoon with results due a week later. Seven days to find out if I’d come out of remission.
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. Had I fallen out of remission? It could be anything. I needed another CT and another MRI scan plus an appointment with neurology. F*ck-a-doodle-do, quite frankly…
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.
Are you looking for reliable and up-to-date information & support on cancer related issues? Hit up the peeps at MacMillan Cancer Support.
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…
0 Likes 8 Comments
Wenna – 21 Jan 2013 at 21:48 – Via Facebook
Pain-free but slightly dopey. Tramadol 🙂
11 Likes 4 Comments
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 🙁
4 Likes 58 Comments
‘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.
Hiding In The Hospital
By January 2013, Sketch and I had rarely spoken since the summer. Put bluntly, shit was less than amicable and feelings were running high. He had moved out of Truro and was seeing the boys sporadically.
I facebooked to tell him I was awaiting another diagnosis and was pretty sure it was shit news. Unsure of what reaction to expect, given the crappy lay of the land between us, I was amazed by his response. Sketch 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 two 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 rare that they had no point of reference. It had also metastasized back to my liver. I had fallen spectacularly out of remission with 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 lymphoma had metastisized 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 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 eight weeks. It wouldn’t be a case of two 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 semi-roasted chook 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.
Out of remission, but 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 seventeen 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 lymphoma 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.’
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 seventeen consecutive days of radiotherapy were due to commence. My situation was so shitty and it was then that Dad bought me my first ever 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…’
So 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! 😉
11 Likes 4 Comments
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…
2 Likes 2 Comments
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
43 Likes 14 Comments
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.’
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 peek at the rest of my blog. 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.