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https://simplysarcoma.wordpress.com
Hello!
Thursday 2nd March 2017
"We live in bodies that are fearfully and wonderfully made, yet they are not immune to illness and pain. We have hearts that are capable of experiencing great love, but sometimes they get broken." Adam Hamilton
Hello!
I'm really happy you've landed here.
I've never blogged before and I'm feeling nervous about opening up and sharing my private thoughts with you; revealing my deep hidden fragility and vulnerability. I always like to feel strong, in control, able to help others but I've felt a million miles from home over the last year.
In 2016, my world shifted from having a barely noticeable lump on my leg, to a raging high-grade sarcoma that interrupted my life beyond reason.
I felt that I had lost all control. My family and friends wrapped comfort and love around me and they too felt a bomb had exploded.
I'd never come across the word, sarcoma, when I was diagnosed. Only about 1% of all cancers turn out to be this very cheeky active type (medically referred to as rare and aggressive) So chances are there are millions of others who don't know about sarcoma.
I'm no expert on sarcoma but I've lived with it for over a year now so let's say I'm really familiar with it.
Sarcoma, like any type of cancer, demands so much attention, creates heightened emotions, and almost drove me to the edge of insanity. It causes problems. It presses the pause button on careers, education, retirement, holidays. It fires a rocket through social lives, personal relationships. It's hungry. It's greedy. It makes time and money evaporate.
I'm so focused on surviving to give me the opportunity to inspire and help others. I'd love for someone to look at me and say because of you I kept on going.
To be able to inspire I really need your help so that I can access ground-breaking immunotherapy treatment overseas, that's not yet available here. We've explored lots of avenues here in the UK and to date the research has not led us to the answer for sarcoma.
If you can help me to spread the word about sarcoma that would be amazing and I'd be so grateful to you for any help at all.
If you want to share your thoughts and experiences, I'd love to hear from you.
If you want to share your thoughts and experiences, I'd love to hear from you.
Sending you lots of love, light, hugs and wishes for great health.
Jules X
P.S. A great resource for those of you affected by sarcoma or simply interested to know more, is Sarcoma UK
1. Innocuous Lump
November 2015, Thornton-Cleveleys
And once the storm is over you won't remember how you made it through, how you managed to survive. You won't even be sure, in fact, whether the storm is really over. But one thing is certain. When you come out of the storm you won't be the same person who walked in.
That's what this storm is all about." Haruki Murakami
eggs cream brandy sauce cloves honey cucumber spring onions dessert wine cheese (not blue) chestnuts bananas sliced white sherry vinegar cinnamon black pepper black olives limes fresh ginger sage leaves leeks hummus tree baubles lights soft mixer drinks biscuits for cheese artisan breads butter cream Monbaziac x 3 Red x 6 White x 6 liqueurs cognac organic meat hamper veggies fruit mince pies nibbles ingredients for goodwill pie ingredients for alpine sour ingredients for mulled wine serving dishes christmas crackers advent gifts local cheeses holly and mistletoe table runner biscuits sweets and chocs cards do hot tub bedding house clean deliver to Jo Chris and Sue sweep leaves.
I like lists. When I make lists it stops the swirling around in my head. I'm a bit dizzy you see. It helps me focus and get the job done in half the time. This list is chaotic. I expect you abandoned reading the list part way through it. It happened at a chaotic time. Actually a totally shit time.
Christmas 2015 was fast approaching. I was a bit tired but kind of up for it. We'd been really busy and actually I'd been working crazy hours for years.
The whole family was coming home including future in-laws. I wanted to make it special. Four months later at the back of my Muji notebook I found that shopping list and scrawled at the bottom of one of the pages "That's such a f*****g middle-class list"
The Christmas shopping list seemed so unnecessary; drawn as usual into the festive shop til you drop.
Earlier in the year, I'd noticed an innocuous lump on my lower left leg. It wasn't sore. It didn't show signs of growing. It was about the size of a marble and I thought no more of it.
2: Not an emergency
October 2015, Manchester, London, Thornton-Cleveleys
“Every sickness has an alien quality, a feeling of invasion and loss of control that is evident in the language we use about it.” Siri Hustvedt
The lump had peeped out following a first and hysterical attempt at skiing on an indoor slope, ChillFactore at the Trafford Centre in Manchester. I spent most of my time like a water boatman beetle that had found itself upside down, legs flailing and unable to flip over.
You may think I'm exaggerating but the Health and Safety manager actually came on the piste and, after asking if I'd been skiing before,(teenage blushes) said I was a danger to myself and others (fair comment). My middle son, Dan and I laughed so much on the way to the car. Glad to see the back of the dangerous slippy place that made me dangerous. End of my skiing career.
Later that year my friend Sue and I went to London for the weekend. Mr Y was happy I was going away again to 'spend more time with your friends'
Sue and I were staying with my eldest son, Matt and his fiancée Katy. We had been really looking forward to it. We had been friends since our first babies were born. I wasn't feeling too good when we left home and continued to feel worse as the weekend wore on.
A bladder infection. I rarely take medicines. I bought some over-the-counter treatment.
I googled bladder infection cures. Result: drink lots of water and cranberry juice. No change. It was raging and all I wanted to do by the last day of our break was to lie in bed and sleep the pain away.
When I arrived home, Mr Y took me straight to the walk in centre and I was seen quite quickly. The nurse took one look at me, by this time, rather pasty-looking with a fever. She carried out a few tests and prescribed 'strong antibiotics' I was so relieved that there was something that would help me to get better.
Not had antibiotics for over 25 years. I stay away from medication if I can. As I was leaving the consultation room a fleeting thought passed through my mind. The lump on my left leg was now more swollen and red and hurt. Shall I ask her to look at the lump too? No it's busy, lots of needy patients waiting. I can pop along to my surgery. It's not an emergency.
3. Yum yum antibiotics
December 2015, Thornton-Cleveleys
“Any fool can know. The point is to understand.” Albert Einstein
Just over a month passed by. I was really busy at work, yet I knew I needed to go to my GP because the lump was still swollen and angry, despite saying goodbye to the bladder infection pretty quickly.
December 8th came round, I called into my local surgery. I was really surprised that there was an appointment available that afternoon.
It had been over 6 years since I had last been in the surgery. Everything seemed much the same.
I spotted a couple of new names on the list of GPs; funny that it was these two newcomers (probably been there for years but new to me) were the ones to play a part in the misdiagnosis and the diagnosis.
The GP I was allocated was visibly flustered. The receptionist had warned me that the doctor's wife was in labour and had been taken into hospital so, "You'll be his last patient of the week"
I understand that he was there and not there. Wife having a baby right now and middle-aged woman with lump on her leg. I know which he chose.
"Take these antibiotics for 7 days and then come back and we'll re-assess"
I looked at him directly and asked, "Have you ever seen anything like this before?"
"Oh yes many many times"
His words felt insincere and dismissive and perhaps they were. He wore a forced smile.
"I've got no other symptoms of infection and I had a course of antibiotics last month for a bladder infection. Do I really need antibiotics?"
"Yes"
Interesting that later, totally unprompted, the sarcoma nurse would say to me, "Sarcoma is so rare that a GP can go a whole career without coming across a case of sarcoma"
Yum yum antibiotics just what I need. And that's not me talking.
Waste of time? Let's see. Not so happy but obedient patient. As a rule, I don't blindly follow what people say but on this occasion, probably fear-fuelled, I decided to follow his medical expertise.
I returned to Reception and booked an appointment for 10 days later - the earliest appointment.
4.Picking up the pieces
December 2015, Thornton-Cleveleys
"You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You must do the thing which you think you cannot do." Eleanor Roosevelt
Hardly surprising feasting on the antibiotics.
Why did I accept the antibiotics in the first place? I was flooded with fear. I wanted it to stop growing, to disappear, for it to be finished, over with. Gone.
Lady GP waiting for me this time. Quick summary even though she had my notes. Mona Lisa face. Matter-of-fact response,
"Let's have a look"
I flashed my leg in a far from burlesque way.
She touched the lump. She measured the lump. The lump made her frown. The lump changed the look in her eyes. I looked into the black mirror of her eyes and it changed mine too. A deep empty aching echo crept in under the door and engulfed the consultation room. No it didn't. It engulfed me.
"Okay we have very strict NICE guidelines to fastrack any soft tissue swellings. You need to go for further investigations and it will all happen within the next 2 weeks"
I've never seen her again. I wonder if she remembers me? She picked up the pieces from her colleague's consultation and I thank her for that.
I had a really strong feeling that the lump was malignant because I recalled the surface texture of a tumour years ago. Before my children were born, my mother found a lump on her breast. The surface was like a cauliflower floret. It was breast cancer. She did really well. Had surgery, radiotherapy at The Christie and it never came back again. Hope.
Seven days until Christmas and words sinister, rule out, and fastrack crept round my heels like poison ivy as I left the surgery.
I phoned my brother, Craig, as soon as I left the surgery. I knew he would help me to be calm. Mr Y later told me that my visit to the surgery rang huge alarm bells in his head because it wasn't a place I went to unless I really needed to.
I didn't share this with my sons or mother. Didn't want to worry them. After all at this stage it was supposition perhaps driven by a collective fear. Surely the bogeyman wasn't that close?
5. Fastrack
December 2015, Chorley, Thornton-Cleveleys
“Have I gone mad?
I'm afraid so, but let me tell you something, the best people usually are.”
Lewis Carroll, Alice in Wonderland
Almost a month had passed since my first GP consultation. The delays with misdiagnosis, with antibiotics meant that we hit the Christmas holidays which meant further delays. Then of course there was the initial delay of me not realising the lump was an urgent matter.
"Its dangerous to self-diagnose mum." said my youngest son Mike. Prophetic words.
29th December found me at Chorley hospital where I had an appointment with a consultant. He took one look and arranged an ultrasound that afternoon.
The ultrasound was difficult as I couldn't bear anything touching the lump. It was sore, grumpy and sensitive. Perhaps it knew they were about to blow its cover.
The consultant showed me the black-tar mass on screen and swiftly arranged an MRI scan.
"Is 2nd of Jan okay with you?"
"Errrm yes"
Alice fell down the rabbit hole, so fast, so disorientating, so shocking.
My partner and I left the hospital. We knew.
My brother and I knew in the still semi-light of the back bedroom as I lay on my therapy machine.
"What do you think" I asked as he felt the lump on my leg.
"Do you think it's malignant?" I asked through the shadows.
"Hmm, yes I do."
We both felt the same. The night darkness descended full of contemplation.
The weather over Christmas seemed symbolic. It never stopped raining and not the drizzly stuff, the real chuck-it-down rain that makes you not even consider going outside. I loved having a houseful and totally loved having my family around me.
This Christmas felt heavy too and tiring. The burden of knowing. The body sick and tired. The anxiety exhausting.
New Year's Eve arrived and my 3 sons, daughter-in-law to be and parents had returned to London.
The rest of us weren't up to big celebrations so we settled in together with nibbles, drinks and Jools Holland's Hootenany. Mr Y drank and drank and drank; consumed with his own thoughts.
Was he falling down that rabbit hole too?
What was he to say? What was I to say?
Cancer's not the topic for New Year's Eve; it's full of optimism for the year ahead.
Cancer feels dark, heavy, menacing; no place in a world full of merriment and Auld Lang Syne. No place anywhere.
I felt the air hang heavy with unspoken fears for the next year.
Mine were....How bad is it? If it is IT has it spread? Would this be the last New Year?
Empty hollow throat-grabbing fear. I walked to the beach.
I wanted to be alone. I didn't want to be alone.
What will this year bring? I stared into the inky horizon and prayed on the shoreline. Fireworks filled the skies with joy, excitement, optimism as the clock struck 12 and way below those rejoicing skies I carried home a huge bag of heavy, hollow solitary darkness.
Happy New Year.
"Its dangerous to self-diagnose mum." said my youngest son Mike. Prophetic words.
29th December found me at Chorley hospital where I had an appointment with a consultant. He took one look and arranged an ultrasound that afternoon.
The ultrasound was difficult as I couldn't bear anything touching the lump. It was sore, grumpy and sensitive. Perhaps it knew they were about to blow its cover.
The consultant showed me the black-tar mass on screen and swiftly arranged an MRI scan.
"Is 2nd of Jan okay with you?"
"Errrm yes"
Alice fell down the rabbit hole, so fast, so disorientating, so shocking.
My partner and I left the hospital. We knew.
My brother and I knew in the still semi-light of the back bedroom as I lay on my therapy machine.
"What do you think" I asked as he felt the lump on my leg.
"Do you think it's malignant?" I asked through the shadows.
"Hmm, yes I do."
We both felt the same. The night darkness descended full of contemplation.
The weather over Christmas seemed symbolic. It never stopped raining and not the drizzly stuff, the real chuck-it-down rain that makes you not even consider going outside. I loved having a houseful and totally loved having my family around me.
This Christmas felt heavy too and tiring. The burden of knowing. The body sick and tired. The anxiety exhausting.
New Year's Eve arrived and my 3 sons, daughter-in-law to be and parents had returned to London.
The rest of us weren't up to big celebrations so we settled in together with nibbles, drinks and Jools Holland's Hootenany. Mr Y drank and drank and drank; consumed with his own thoughts.
Was he falling down that rabbit hole too?
What was he to say? What was I to say?
Cancer's not the topic for New Year's Eve; it's full of optimism for the year ahead.
Cancer feels dark, heavy, menacing; no place in a world full of merriment and Auld Lang Syne. No place anywhere.
I felt the air hang heavy with unspoken fears for the next year.
Mine were....How bad is it? If it is IT has it spread? Would this be the last New Year?
Empty hollow throat-grabbing fear. I walked to the beach.
I wanted to be alone. I didn't want to be alone.
What will this year bring? I stared into the inky horizon and prayed on the shoreline. Fireworks filled the skies with joy, excitement, optimism as the clock struck 12 and way below those rejoicing skies I carried home a huge bag of heavy, hollow solitary darkness.
Happy New Year.
6. Scans
January 2016, Preston
"Fear is only as deep as the mind allows." Japanese proverb
This fast-track process was fear-drenched; hopping from one appointment to another.
I had only ever seen an MRI (Magnetic Resonance Imaging) scanner on TV or printed page. I recall feeling it looked futuristic Space Odyssey equipment.
As I was led, in my hospital-issue gown, to the MRI scanner I felt like I had dropped into a new world; unfamiliar, white, with hard edges.
A huge donut-shaped machine presiding over an otherwise empty room with a viewing window not too far away. Radiographer and technician huddled behind the window of the control room and used an intercom to communicate. Was I to be interviewed for a crime I didn't commit?
As instructed, I lay down on the scanner bed that ran through the huge donut. A cannula had been inserted into my left arm ready for the contrast dye. The technician placed a couple of white rectangular weighted pads over my legs and pelvis. A panic button was placed near my left hand. I can understand how some people get claustrophobic. I went in legs first. Headphones with music for my enjoyment and to drown out the noise.
"Here we go. Keep still. We'll be finished in about 45 minutes. Just lie still and follow our instructions."
I am at your mercy. Helpless and not for the first time.
Sounds of a concrete mixer full of bricks, pneumatic drills, with high pitched backing screamers filled the space and drowned out the classical music from the headphones. Instructions to breathe in, hold, breathe out; next scan is for 3 minutes, 2 minutes, then 6 minutes punctuated the session.
Felt kind of ambivalent towards the MRI scanner and yet happy it was over if only to swiftly exit yet another hospital appointment.
Next up on this macabre fairground ride was the CT (computerised tomography) scan a week later.
I was feeling more entrenched in the system.
I had been truly sucked into the huge NHS vortex.
Anonymised in a month.
Disempowered.
The CT scanner looked like a vintage version of the MRI scanner. I approached it with a sense of indifference. I had developed a coping strategy since December where I was simply breathing in and out, disregarding everything except this very moment. To go beyond that was too overwhelming.
"Can I read my book while it does its stuff? "
"You'll only be 5 to 10 minutes."
Injected once again. Contrast dye.
Breathe in. Hold. Breathe out. I'm good at that now.
7. Biopsy
January 2016 Chorley, Thornton-Cleveleys
“Have you ever had a shock in life? It takes great hope, faith and courage to bounce back.” Lailah Gifty Akita,
Thrust into a world of.....What next? What if? What the F***?
Feeling sick. They've found it. Are they looking for more? Why all the tests?
The NHS is well known for struggling with funding and here am I having a stream of expensive diagnostic tests.
Certain dates are unforgettable. So it was with diagnosis day, 12th January 2016, two days before my eldest son's 30th birthday. Anticipatory celebration filled the air. I was about to steal the show and it was actually the last thing I wanted to do.
But they needed to know. It had been a couple of months since the madness began.
My partner and I went for the results at Chorley hospital. The frosty receptionist motioned for me to take a seat after giving my name, date of birth, and address for the millionth time.
I was called by the sparkly-eyed specialist nurse with a wide smile. Today there was no sparkle in her eyes and her lips remained tightly closed.
We knew.
Don't recall much of it. The words Sarcoma, rare, aggressive, biopsy, CT scan rose in the air from the nurse's tight lips. Note to self: bring notebook to all meetings; brain mash deletes diagnostic information.
My 3 sons live and work in London so it was going to have be a phone call. I firstly messaged each of them, "Please call me when you're free"
Quick as a flash, the eldest, Matt, called. I told him. Sarcoma. Funny I've never asked him if he knew what it was at that time. I certainly didn't.
Next up the youngest, Mike.
Both were shocked, stunned, helpless, and upset.
Finally the middle son, Dan, who shouted down the phone,
"FFS Mum!"
I felt him recoil.
He knew all too well. His good friend at University aged 20, studying medicine, had been diagnosed with sarcoma. Loved rock climbing like him. Leg amputated, radiotherapy, chemotherapy, and ended up with Stage 4 metastases. He passed away not long after graduating. I remember Dan being deeply touched by the suffering of his friend and also his death. So vibrant, so young, a life full of promise. Taken.
Anyway it was done. The hardest part. I had told them. Their pain, their shock, ripped through my heart.
Biopsy day rocked up. I was feeling sick as a young nurse led me down the corridor.
She asked if I was okay. I broke down in tears and blubbered, "No! I don't know what's happening to my life! It's all happened so quickly."
She handed me some tissues.
The large operating theatre was ready for me. It loomed larger with my smallness.
The biopsy was so painful. Remember the lump had been red, hot, and tender for a while now. Touching it was sore enough.
The sadistic biopsy needle, like a stapler gun, was torture, especially as he decided to take four samples.
My breathing automatically switched from hyperventilating into labour contractions breathing and I soon broke out in a cold sweat and grabbed the nurse's hand in a vice-like grip.
The doctor used local anaesthetic but I swear he didn't use as much as the dentist for a filling.
I later read that biopsies can cause cancer cells to start moving around the body.
Exhausted. Blood pressure low. Hardly surprising.
My partner again was there for me and to console me.
How was he coping?
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