What a week #sarcomaaware

Well today is the last day of Sarcoma Awareness week here in the UK and what a week. Sarcoma has taken over my Facebook feed, my Twitter feed and even on Instagram. It’s been great to see so many people sharing their stories and generally raising awareness of such a rare cancer.

We closed the week with my sister doing the 10k Tesco Race for Life at Haydock racecourse today with #sarcomaaware on her back. Well done to Sue and everyone who took part.


Good luck to our US patients who are continuing to spread the word in Sarcoma Awareness month.

I hope you’ve enjoyed the posts this week, and can assure you, I won’t bombard you every day from now on 🙂

Good night xx

Close up of sarcoma

This week I’ve shared lost of posts with the aim of raising awareness.  You’ve heard about sarcoma and seen scars but I thought I would share what my particular type of Sarcoma looks like close up…. 

Wow! Don’t be fooled by this pretty pink thing, it’s deadly.

Be aware of your body and ANY changes.

#sarcomaaware

#sarcomaaware from the Liverpool support group 

It’s day #2 of Sarcoma Awareness Week here in the UK and today was all about raising awareness of this rare cancer.  We camped out in the foyer of the Royal Liverpool University Hospital all bursting to share information and stories. 

During the day,  one of our patients brought 200 fuscia plants to sell and we raised over ÂŁ250 for charity. 

The old and the new 

We some to lots of people today so with different stories. I had a lady approach me to say that she had an osteosarcoma in 1997 when she was 27. 19 years a survivor-WOW! I love positive stories and this one gave me a boost. 

We also had a lady who wanted information as her father in law was diagnosed yesterday. He’s at the very start of his journey and we wish him luck for the coming months. 

It’s always great to meet the group. And we’ve had a lovely day.  Thanks to everyone for supporting us this week. 

Almost four years….

Hey there folks. 

Went out for a birthday meal with my crazy family today. I got home and in the interest of comfort, I decided to put some old shorts on. Said shorts just happened to be the ones which wouldn’t fit me (just the right leg) which made me head to the GP and began the start of this journey with sarcoma…. 

These shorts didn’t fit my right leg at all in September 2012. Here’s how they fit now. P.s pardon the rubbish photography.  Blame mother!!!

Metacogna-what? #sarcoma #Macmillan #mentalhealth

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When you think of cancer what do you imagine? Bald heads, headscarves, wigs, hospitals, surgery, need I go on? People rarely think of one of the main side effects of life with and after cancer.  Mental health.

Depression is not a word I have ever associated with, nor is anxiety. In fact I believe I have travelled on this journey with positivity and a smile (along with a vodka or two!). There have been times where I have struggled with appointments, scans and emotions – just normal things and I did seek support from Macmillan who offer counselling for people affected by cancer.  It was OK,  nothing groundbreaking but I did learn to talk about how I was feeling and accept that there would be times where I struggled.  I was referred back after six months as I was still not coping.  Again,  I accepted that every 12 weeks (scan time) I would be a wreck, unreasonable, narky and angry [insert your own word here] But hey it’s OK, I have cancer.

In October I was told good news – my scans were clear. How did I react?  I was inconsolable, angry and stressed. I realised that this was not OK and my lovely nurse referred me back to a different counsellor. I reluctantly gave it a try…..

Metacogna-what?
I traipsed along to Liverpool and met with my new counsellor Angela.  I was not expecting any results and I was embarrassed so I told few people about my sessions.  Mental health issues,  not Emma McCloskey.  Angela asked if I would try a therapy which would be part of a study. I agreed and, although I was still sceptical, I met with the professor at Liverpool University.  I answered more questions in one meeting than Mastermind had in a whole series. The results? I had depressive thoughts but was mainly suffering from servere anxiety. Me? Anxiety?  No way, Josè.

I started a course of therapy with Angela the following week. Metacognative therapy to be precise. This wasn’t talking feelings (which I hate)  but this was about understanding beliefs and breaking them down. understanding worry and how you react to it and how this can control you and waste your life.

Did it work
Yes. This therapy has changed my life. I ‘choose my mood’. Reactions to situations and thoughts are completely in my control and I know that now. I can see people stressing and worrying about things and I new look at them in disbelief. Why is this not common sense? Why do we get stressed over unimportant things?

I never ever ever believed in therapy and counselling…but I do now. I absolutely do.

And the cost…..
Free
Yes, that’s right, this therapy has cost me nothing. It was provided free of charge by Macmillan. WOW!!! This course was only possible because of the lovely folk who donate to this wonderful charity. So if you have donated to them,  THANK YOU.

Talking on behalf of @sarcoma_UK at Manchester fundraiser

I am used to speaking in front of people and doing presentations,  neither faze me, but last night was a challenge.
Sarcoma UK had asked if I would be a patient representative and speak about sarcoma at a fundraiser in Manchester. To speak about the illness which has hijacked my life for almost four years….

Let me set the scene: Over 100 people in a room celebrating their loved ones special birthday, laughing and joking, drinks flowing, music playing….you get the picture.  I got nervous thinking that no one would want to interrupt their partying to listen to me. But was I wrong. You could hear a pin drop! I drank a glass of prosecco and took centre stage….

The speech lasted a matter of minutes but felt like a life time. I spoke about Sarcoma UK and their three aims:
1 – support – not only patients but their family and friends
2 – awareness – less than 1% of cancers diagnosed are sarcomas so this is key
3 – research – to find a cure

I shared a little bit about myself so that they knew I was a patient and that I was speaking from experience. 

Afterwards I was plagued with panic. Did I ramble on?  Could people hear me? Did I get across Sarcoma UKs aims? Did I bore people?

I needn’t have worried, as people came to talk to me and gave me great feedback.

The people there were so generous and have raised lots of money for Sarcoma UK. I’d like to thank them as Sarcoma UK is a wonderful charity.

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Me afterwards

me afterwards

What a decision to make #sarcoma #cancer #patientchoice @sarcoma_uk

I met a gentleman last week. 

He was 84 but didn’t look a day over 60. 

He was very polite and listened intently to the group. 

He spoke very gently.

He had to decide on wether to have any treatment for his sarcoma.

What a decision to make, eh?

Some people reading this will think it’s an easy decision. A no brainer. “Of course he should have treatment”, “don’t give up”, “keep fighting”, “why wouldn’t he have treatment”. I hear you though. I understand why you would think that.

Well, it’s not that straight forward. The surgery he must have will be very damaging for his leg and will massively impact his mobility, permanently. For a man who lives alone and enjoys not only his independence but his lifestyle, this is a torturous decision. He made reference to the fact that this cancerous lump could ultimately end his days but he needs to weigh this up against the kind of life he would have if he opted for treatment.

The support group immediately willed him to opt for surgery, to convince him that it’s a breeze to adapt to life with a disability, to not give up. But it’s easy to give someone else advice. I’ll tell you, it’s damn hard to pick yourself up after major surgery and face being disabled and the whole host of challenges that it brings. I also expect that it’s also hard when you are doing this alone and are in your eighties.

The NHS allows patient choice in their journey and it’s the best way as people can collaborate with the medical experts and make the choices that are right for them.

No one can decide for our friend. We can only be there to support and respect his decision when he finally makes it. 

What a decision to have to make.