Does cancer change you? #Sarcoma

I get asked this question on a regular basis. And the answer is YES. I’ve found it so difficult to put into words exactly how I’ve changed but then I saw this post on a fellow cancer fighters facebook page. Thanks Donna for sharing it

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Thanks for reading x

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

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

Chemotherapy by numbers #Sarcoma

Well, who can believe that I’ve finally finished my chemo. It doesn’t seem five minutes since I had my CT scan and was sat I front of Dr Chandra being told we have to start this fight again. After I finished radio in January 2013 I wrote the blog post Radiotherapy in numbers and I thought I’d do the same for chemo. So here goes….

3 lung mets
18 nights on Sulby Ward at Clatterbridge
18 week journey
2160 miles travelled in the ELT mobile
0 times John took the wrong turnoff (at the same point from M53-M56) <strong>well done!!!!!</strong>
3 hospital meals consumed
2 X-rays
2 MRI scans
2 CT scans
54 minutes of Doxirubicin chemo
72 hours of Ifosomide
4 wigs
1 picc line
9 cannulas
1 leak of chemo
4 Friday morning visits from Vicky
12 Krispy Kreme donuts (courtesy of Claire)….

…..and <strong>far too many visitors to mention</strong>

There have been too many kisses, cuddles and tears.

I have been overwhelmed by the support that I have received from each and every one of you. I honestly can’t thank you all enough for making the trek to visit me. Especially to John and my Mum & Dad who were there every day for me. I would also like to thank Bert for behaving 🙂

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Fun Fun Fun

I’ve been a busy bee since finishing treatment. I’ve been to Edinburgh to watch a show and have drinkies with the Scottish McTickles – thanks Dave & Sabs!! We went to London last weekend for a cheeky trip of luxury and partying.  So it’s just one more trip before my surgery next month then we will have to calm it for a few months while I recover!

well that’s it for now. speak soon xxx

p.s here’s the gorgeous roses from my secret admirer at Valentines!

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Drama queen #Sarcoma #cancer

Greetings from Clatterbridge

Well, I’m here for my penultimate cycle and, knowing me, it’s not without it’s dramas. So I had my PICC line out because the dressings were too harsh for my skin, this means my treatment needs to be administered by a cannula. I’ve had to be re-cannulated each day!! Tonight’s drama started as soon as the Doxirubicin was pumping in. My skin burned and my arm swelled up so we had to stop, withdraw the chemo that had gone in, remove my cannula, wear an ice pack on affected area for 30 minutes, apply cream and the poor nurse had to fill in approx 29 forms….! So for the next 24 hours I need to be monitored and every two hours I need an ice pack for 30 minutes and cream applying…..so that’s no sleep for me and no discharge until 5pm tomorrow 😦

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Visits
I’ve had a busy few days with visitors. Thanks to Vicky, Mindy, Leanne, Joe, Vicky, Paul & Helen & the mini macs. Not forgetting my lovely mum & dad, Mike & Beckii and the amazing John who have all been here daily. Was lovely to see you all….see you on my next cycle!!!

P.s thanks for my voddy Leanne!!!!