It’s all about the awareness @sarcoma_uk #sarcoma 

A journalist from the Liverpool Echo contacted me last week. She’d stumbled across my blog on Twitter and wanted to know more about my journey since diagnosis.

Helen Whitehouse published the story today and my social/virtual world has gone bonkers. I’ve had messages from well wishers to others who’ve been touched by this disease.

Thanks to Helen for writing a great story. If you want to read it please click here. Also a huge hanks to everyone who has shared/liked/commented – if one person gets a lump checked out because of my story, then it’s been worth it.

Yes, Prime Minister @sarcoma_uk #sarcoma #cancer

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I am writing to you from a Virgin train after a little jaunt to the Capital. I’ve been working in our head office near Gatwick Airport, blah blah blah, that doesn’t interest you at all.  In between my hectic work schedule I managed to squeeze in a visit to Number 10.

About 4 weeks ago I received an invitation for an evening with the Prime Minister, Theresa May.  I eagerly accepted and waited in anticipation for the night.

Here’s how the story goes
I set off from my hotel in the freezing cold, dress on, hair done, invitation in hand, wait, wait, wait, wait – I forgot my photo id! I traipsed back to the hotel scolding myself for being unprepared.  After a short train ride I finally made it to Westminster and was awed by the sight of Big Ben lit up.  I was so excited.  I called my friend Lesley to meet her but no answer (I could guarantee she was in the pub!) so I headed to Downing Street and joined the queue with other sarcoma patients, medical experts and Sarcoma UK staff. After a thorough security process, I was at No 10!

No photos so we had to store our phones at the entrance.  We were all escorted to a drinks and canapés reception on the first floor which spanned two very impressive and plush rooms.  Paintings of previous Prime Ministers and Monarchs covered the walls. After mingling, meeting new people and being asked “hey, are you dizzytix? I follow you on Instagram” three times, Theresa May entered the room.  After a few pleasantries she headed to the microphone and spoke about sarcoma and why No 10 had chosen Sarcoma UK as their official charity.

In 2015, Chris Martin who was the Personal Private Secretary to the Prime Minister sadly passed away after being diagnosed with sarcoma. Obviously his friends and colleagues wanted to raise awareness and much needed funds for vital research.  This has catapulted Sarcoma UK from a small charity into the spotlight as a major player in driving change for sarcoma patients. WOW.

In the words of our Prime Minister:
We’ve been honoured to support Sarcoma UK as the 10 Downing Street charity of the year. Chris is a much missed figure who was hugely popular amongst his colleagues here and the whole team has been very proud to continue his legacy, helping raise funds and awareness for Sarcoma UK, the only charity of its kind in the UK.”|

It was lovely to hear Theresa May talking about the things that they have all been doing to raise funds for Sarcoma UK, from Tough Mudder (she made it clear she wouldn’t participate in that one!) to fancy dresses and bake offs. It made me realise, these are good hardworking people who are trying to do something amazing in memory of their colleague and friend and its completely irrelevant what your political stance is.

I am truly honoured to have been invited last night and to be in a room full of such wonderful and amazing people made it extra special.  I’d like to thank Sarcoma UK, not only for the invitation, but for the support and work that they do for people like me.

Richard Whitehead
The Paralympian Gold Medallist Richard Whitehead is the patron of Sarcoma UK.  He volunteers tirelessly for the charity and even completed 40 marathons in 40 days…(yep!) and last night, he was awarded the Point of Light volunteering award for his services to the charity. This award recognises exceptional volunteers who make a difference in the lives of others. He truly is an amazing and humble man who wants to help and improve things for us sarcoma patients. Well done and well deserved Richard.

To read Sarcoma UK’s write up please click here.

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Post op histology #sarcoma

well hello everyone,

I’ve had a busy week with appointments at Liverpool. Firstly, seeing Dr Chandrasekhar who was happy with my progress and my leg.  No one else in the world can even look at my leg yet Dr Chandra gives it a good going over! *Ouch*

The next day I nipped to Broadgreen to see my thoracic surgeon.  Mr Shackcloth had received the histology results on the tumour that he’d removed – it was a damn sarcoma metastasis but the good news is that it was completely removed.

Cancer free again!

Oh and I was given the OK to drive again….what a great day!

Enjoy your weekend 

 

A holiday to the top of Snowdon? #Sarcoma

  Yes, you read right. A holiday to Snowdon? Let me explain!

My sister, Sue, decided to climb Snowdon to raise funds for Sarcoma UK – her target was £150. Before we knew it, most of the Tickle clan had decided to join her. The team consisted of Daddy Tickle, Eldest Tickle (Sue), Naughty Tickle (Mike), Baby Tickle (Laura), My nephew Danny (the youngest of the team) and my cousin Karen.  Karen is actually on holiday in the UK, from Australia, and somehow, our Sue managed to get her to do the climb! The day was horrendous, with downpours and bad winds, but the team managed to reach the summit. Daddy Tickle (who is 60 by the way) arrived 30 minutes before the rest. 

Every day we are asked for donations from people doing different tasks which are a challenge – they are not easy as some people may perceive them to be. The team returned wet, sore, emotional and shattered. Tears were shed, laughs were had and money was raised. It wasn’t easy, it wasn’t a walk in the park and they deserve every penny donated to them. So, how did they do?

10 times the target

The team raised more than the targeted £150. In fact, they raised over ten times that, with the total standing at £1200 as of today. Donations even came from Karen’s friends in Oz.

I am so grateful that the team raised so much money for such a worthy cause. The money raised will go into research which is the key to finding a cure.

Thanks so much to all who donated.

  

Great news with perfect timing for Sarcoma Awareness Week #Sarcoma #cancer

Morning everyone,

June has been a really busy month for me. I’ve been working most days, had an MRI scan and a CT scan. So, here’s an update.

I went for my three monthly check up on my leg. Mr Chanasekar wasn’t there so I saw Dr Yin. (I’ve only met him once and that was a few days before diagnosis so it’s been almost two years) he immediately made reference to the lump I have under my scar. Sarah (my CNS) and I explained it has been there for 14 months or so and all scans have showed up clear since then. Dr Yin wanted to be on the safe side so he referred me for an MRI. Cue whirlwinds of scary thoughts around my head…. I had to go for my results last Monday – John was at work, and Mum was on holiday so Laura came along with me. Now for those of you that don’t know Laura – she cries at Peppa Pig….! So by the time Mr Chandrasekar had walked in, we were both in tears! Bet he was gutted to have two emotional Tickles sat in his room! Great news though, the scans were clear! Phew!

The following day, I was scheduled for a CT scan to check my lungs. Now this was the scariest one for me. The scan itself was only a few minutes but it’s the torture of waiting for results and not knowing if there is anything lurking. As I left the scan, Sarah, my nurse, was sat waiting to say hello. She was with another sarcoma patient who had a scan at the same time so it was like a reunion!
On Friday (not even 72 hours after my scan) I was sat at work, minding my own business, when my mobile rang with a number I wasn’t familiar with. I wasn’t going to answer as I had lost all my numbers the previous day so assumed it was just another Tickle wanting a chinwag. Curiosity got the better of me and I answered to hear Mr Chandrasekars voice at the other end. Time stood still (cue music from a horror film) and I felt sick. I asked why he was calling and he immediately informed me the brilliant news that my lungs were clear. I have never felt relief like it in my life. Thanks to Kate and Joe for being there when I needed celebratory hugs!

I know that this journey with cancer is far from over but each time I get a ‘clear’ scan, it spurs me on and gives me more hope.

My thoughts go out to each and every one of you fighting cancer, that have appointments, scans, biopsies, results, surgery, chemotherapy, radiotherapy or any other treatment. Keep going.

Sarcoma awareness week
Today is the start of Sarcoma Awareness Week, and I am going to Birmingham for the press launch. I am so excited and I hope I get to meet Richard Whitehead!
I am off on holiday this week so I am going to take my Sarcoma t-shirt and get pictures at some famous landmarks. I will post them when I get back 🙂

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For more information about Sarcoma please visit the Sarcoma UK website at http://www.sarcoma.org.uk

Goodbye for now. Take care xxx

#Sarcoma North West Support Group

Hi all

I am writing this post from Liverpool Lime Street as my poorly car is in the garage.  I am on my way home from the support group meeting which was held at the Roy Castle Lung Cancer Foundation.

Now, we are coming up to holiday season and with six regular attendees unable to join the meeting, we were expecting a quiet one.  Boy,  were we wrong! Six new people joined us today which is fantastic. We also had a representative from Macmillan come along to see what we are all about.

Not for everyone
Support groups are not for everyone,  but I love our group.  It gives me a chance to mingle with people, informally,  who have been affected by this rare cancer.  Whilst I would not wish cancer on anyone, there’s something reassuring knowing that there are people out there who understand what you are going through, know how you feel and well, are just there for you. Today we had a family attend who had lost someone close to a rare form of sarcoma. Our support group is open to patients, families, friends and carers.

I would like to thank Rob and Lesley for doing a fantastic job running the group.

Check ups
I had a catch up with Dr Ali on Friday.  Things are looking good so now…I need to start living again. So I’m aiming to return to work in June. Yikes! No more daytime TV for me…..

Say what….?!
So I hate it when I am stressing over an appointment or waiting for results,  and what makes it worse is when someone says “Oh you’ll be fiiiine”. Rewind sixty minutes ago when I said those exact words to someone in the support group… #FootInMouth

How big?
My sister gave birth to this Beauty last week who was 7lb 13oz. Slightly heavier than my tumour was. Wowzer! Certainly put that into perspective!

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Well that’s me for today.

Take care x

Question time….. #Sarcoma_uk @Macmillancancer

Good evening all,
I hope you had a wonderful Easter.

So, I’m still recovering from my operations. It’s been more painful than I expected but then that’s probably down to the fact that I had two procedures so close together. I’ve had all stitches removed, removed all dressings and my scars are healing nicely. I am back to see my surgeon tomorrow for a check up so fingers crossed the were positive results from the tumour removed in my last surgery.

Question Time
In two weeks I’m off to the House of Commons to participate in Macmillans Question Time event. Macmillan work with both the government and people affected by cancer to drive change. A huge success of theirs is gaining free prescriptions for cancer patients. This event is just one way to shape the future and gain insight to requirements and work with the government to deliver change.
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Macmillans campaign priorities
Macmillan is working with parliamentarians and decision-makers to:

~ Provide support to cancer carers
~ Push for cancer patients to have access to free social care at the end of life
~ Deliver better cancer patient experience
~ Improve cancer survival rates and strengthen cancer networks in the new NHS
~ Improve access to cancer drugs for people with rarer cancers
~ Ensure that cancer patients receive the right financial support at the right time to cut the cost of cancer
~ Secure improvements to the welfare system for people with cancer who are unable to work because of their illness.

I am really pleased I’ve been accepted and think it’s going to be a great day.

From a doctors perspective
Have you ever wondered what it’s like to be an Oncologist? Well this wonderful man follows my blog and he also does his own. You never really think how Doctors and other Health Professionals feel when dealing with their patients, but this blog gives you an idea. It’s a wonderful read.
http://doctormoiowa.com

Thanks for reading peeps. Take care xx

18 days of mayhem and discombobulation #Sarcoma

18 days ago I arrived at Broadgreen Hospital, excited but scared for the day ahead. 27th March 2014 is a date that will be forever etched into my memory. This was the date of my first operation to remove sarcoma from my lungs. As I was sat being poked, prodded and being drawn on, I received the devastating news that Johns dad had passed away at 08:30 that morning. I went ahead with the planned surgery as I knew we had a tough few weeks ahead. I woke up groggy but relieved to have got through the surgery and I was ecstatic to learn that the surgeon had successfully completed a middle lobectomy. I spent a day in HDU being monitored and the following day my surgeon visited me three times. He was so pleased with my progress that he agreed to perform the second surgery, on my left lung two weeks later……YES – TWO weeks! I was booked in for 11th April.

Last week I received the awesome news that the tumour that was removed was dead….it was obliterated by the chemo. At this stage I decided to proceed with the second operation on 11th, as I didn’t want any remnants of tumours left in my body. I wanted it gone.

So I had a busy week of signing consent forms, check ups, stitches out, organising, packing and not forgetting the most important event – John Mccloskey’s funeral (before you panic, John had the same name as his dad!)

On Friday I returned to the private suite at Broadgreen ready for round two. I didn’t cry all morning and was really good….until I got into the pre anaesthetic room 🙂

Post operative discombobulation
So what do you do when you wake up after an op? Cry, ask questions, want a drink? No, Not me. I woke up and vaguely remember telling my surgeon I loved him….*Groans* It haunts me just like a vodka fuelled night of partying….one that I would like to forget!

Best Birthday Gift….ever FACT
So after quickly erasing the declaration of love for my surgeon from my memory, I returned to my bed. The realisation hit me, I was cancer free….and what better present could anyone give to their parent? Yep, it was my dad’s birthday and after he’d spent the day working, being at the hospital with me and watching warrington Wolves lose (again) I think it’s safe to say that this was the best present he’d had.

Rest
So I’ve been resting and I plan to do more of the same for the next few days. I’m getting stronger each day and I know that this will soon be a distant memory and all the paid will have been worth it.

Goodnight everyone xx

P.s here’s the gorgeous card Jorja Clarke made for me 🙂 I particularly love my green ‘sick’ face

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Standing up to Cancer… #Sarcoma

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It’s been 13 days since I had the surgery on my lungs. Whilst I am in a little pain, I am doing really well and am pleased with my progress.

My wonderful surgeon has just called me to confirm that they have analysed the tumour that was removed and……the cancer cells were completely destroyed. This is fantastic news and means that the chemo did a brilliant job!

I still have one very small tumour on my left lung and I have decided to continue with the next operation to remove it. It’s more psychological but I do not want to leave a single tumour in my body that could come back to life. So on that note, I will be back in the suite at Broadgreen on Friday!

Thinking of friends
Whilst I have had success with my cancer treatment, not everyone has been that lucky. There are a few people who are having it rough and I just want to say don’t give up! There are lots of treatments available and sometimes you have to try a few to find the one that suits you.

Take care and I’ll update soon xx

One week on…. #Sarcoma

Well it’s been a week since I woke up dazed, confused and high on morphine after having a middle lobectomy. I didn’t like the morphine and the fact it gave me bizarre hallucinations – I felt like I’d had a bad space cake!

It’s been a hard week. I have felt extremely tired and haven’t been out of the house much. I’m in constant pain which is managed with over 28 tablets a day…. My discharge information states I should do nothing for the first week, I mean how is that possible? I need to cook, clean and eat etc.

The pain is getting easier so I’m hoping to be on track for op number two next week.

Not much else to report so I’m signing off now. I’ll do a post in a few days to update on the Sarcoma Big Conversation event that I attended last week.

Night x