Sarcoma Awareness Week

You probably know I was diagnosed with Sarcoma last year

June 23rd is the start if sarcoma awareness week, the aim of the week this year is to ease awareness of symptoms wth GPs who may only ever come across one patient with sarcoma in their career.

Currently the average sarcoma is the size of a tin of beans before a patient sees a specialist compared to a grape or smaller for other cancers. 

So the golf ball project was established asking gps to refer patients to one of the sarcoma specialists if a patient has a lump the size of a golf ball. 

All you have to do is fill in the form found on the link below and take the pack to your GP. Simple really, it's free and you never know who you may help. 

http://www.sarcoma.org.uk/Awareness/ontheball

No Makeup Selfies

The recent trend of the no makeup selfie on Facebook has left me feeling raw. Posting a picture of yourself with no make up on is not raising awareness of cancer. Likewise with the secretive underwear colour, or where you put your handbag, quite frankly it's all a load of crap.

None of those things help someone become more aware of the symptoms of cancer, they don't inform someone how they should check their breasts, skin, testicles or vulva. It doesn't tell them that they should be aware of pains amd swellings elsewhere in their body, or a change in the colour of the whites of their eyes or disturbances in the vision. No one likes to talk about toilet habits, but you should be so aware of what is normal for you, you need to know your body. 

Obviously, not everyone wth symptoms will have cancer, but it is far better to go speak to your GP sooner rather than later, where you can be referred on and treated sooner if it is cancer. It is well known that cancers dagnosed in the early stages have better survival rates. 

Raising awareness and support come from actions and words. The recent pancreatic cancer "I wish I had breast cancer" advert was shocking, but it highlighted the horrific 5 year survival statistics, and went on to inform people of the symptoms.

Direct those with cancer to charities, services and groups that can provide support, charities like Shine Cancer Support, that has local and virtual networks for those in their 20s,30s and 40s with cancer. Cancer is isolating, and can throw life plans into disarray, it can be hard to talk to those around you, but talking to someone of a similar age is invaluable. 

I was 27 when I was diagnosed, I had had symptoms for over two years bit ignored them as I thought my GP would tell me my pains were all down to sitting on chairs far too small at work and that I should be more aware of my posture. Even when I was having my tests for the malignancy I thought "it's ok, I'm young, it won't be cancer" the truth is, cancer does not discriminate by age, sex or race, nor is it only skin deep. It can effect anywhere in the body, literally. Mine was in the nerves. 

Around 0.35% of cancer research funding budget is spent on Sarcoma research, and when you think there are over 50 types of cancer it really is horrific to think about that so little is known about those cancers. We  need to raise more funds so that adults and children with these cancers stand a chance. Just because they are rare does not make them any less worthy of research.  

Pancreatic cancer is one of the biggest killers yet has a spend of around 1% of the research budget. 

I'm all for raising awareness and supporting  of cancers obviously, but please do it in a manner that is informative, or is helpful in the fight against cancer. A photo won't help save a life, but giving information to inform someone how to check and be aware or helping to fundraise for a specific type of  cancer might just be the difference that is needed. 

You could save a friends life by arming them with information to help them save their own life, that in my view is more important that posting a photo with no make up on. 

Use the links below for more information on different cancers.  Please let me know in the comments if I've missed something, I know I will have done. 

Shine Cancer Support

Sarcoma UK

Beating Bowel Cancer

Blood Cancers

Coppa Feel

Orchid Cancer (male cancers)

The Brain Tumour Charity

Pancreatic Cancer Action

Gynaecological Cancers

New beginnings

Last weekend I was privileged enough to meet more than 20 other younger cancer patients in their 20s   30s or 40s as part of a fabulous weekend of activities.  Each of the participants has experienced a cancer diagnosis at some point as a young adult and as such were all on the same wavelength. 

One of the sessions I attended focused upon work, after 15 months off sick I am getting to a place physically and mentally where I want and can think about returning to work. I had been in a quandary for a while about what I want to do, unsure if I want to return to what I trained to do or if I want to break  off and do something different.  Cancer changes your priorities and so much about teaching just doesn't seem important to me. One of the activities in the work session was helping people in our small groups see through their question. Well, my peers suggested a pros/cons list, careers questionnaires and then trying out those suggestions. 

In the last week I have completed my pros/cons list for staying in teaching where each point was rated 1-10.  My pros for staying in teaching scored  a mere 60oints  the cons, 140 points. I will repeat in a month, but it seems pretty conclusive, teaching is no longer important to me.  I have looked online at jobs, amd I have found jobs that excite me in the ways I got excited about applying for teaching posts. 

So today we start a new beginning, I'm not Thirteen the Teacher, but I'm Thirteen, a daughter, a partner, a friend, a leader, a swimmer, a singer, a listener, a survivor.

Don't be labelled by your job, you are not your job, you are so much more than it. I feel often we are led to think success is determined by your job, by the label, doctor, nurse, teacher, solicitor. But are we really "successful" if we have achieved those positions? 

"Success is not final, failure is not fatal: it is the courage to continue that counts" Winston Churchill 

"Success is to be measured not so much by the position that one has reached in life as by the obstacles which he has overcome"  Booker T Washington 

Every day  leads to a new tomorrow, another opportunity to start something new, but don't wait until tomorrow to start living. 

 

    The celebratory I've completed my first 1km walk since surgery! 

The price isn't premier, unless you use a vending machine

Last night (Thursday) I stayed in a Premierinn. Cost me £30. Rooms are always clean,my know what you are getting yet I still feel a bit cheated.

I have a mobility disability, and therefore booked a disabled room, as they are better equipped for my needs.  I arrive at the hotel and proceed to go to my room. Right at the far end of the hotel, far away from reception, the main lift, restaurant and refuge point.  ( I cannot remember if there was a refuge point at my end of the hotel... I hope so!)  please note, not all disabled people use a wheelchair, some of us are able to walk some distance but too far puts us in a lot of pain. This was one of those occasions. 

I hate drinking water from the bathroom, I just don't think it's right, so the only option fir me is to boil the kettle and leave to cool. At 11pm, I desperately want a drink, but the kettle won't cool in time, my only option is the vending machine (right by the main lift) so off I pop... £1.50 for a bottle of water... That's more than 5% of the cost of my room! That's insane on any standards. 

My next gripe is a bit more serious,and something I did have to file an accident report form for. Connecting the twn beds is a metal bar, only it would appear this bar was only connected to one of the beds,I caught my foot on it, sending me flying and hurting my back. Not very impressed, it's lucky I was ok, as I managed to do it once in the dark, and then once packing my things away and doing the idiot check. ( making sure you have everything) 

Oh and the onsite restaurant didn't open until 6, but when you are hungry after travelling, you just have to eat. So I found the local harvester where the food was superb, and the service impeccable too. 

So, while my room was cheap, the little extras certainly were not. 

Everything might be premier, except the room prices.

A red box of wonder

I love sweets, perhaps a little too much for my own good, especially for someone limited for exercise I can do, I had seen so many friends excited about their subscription beauty boxes and I would think I wish there was one for sweets.  I google, find plenty in America and eventually I stumble across http://www.thesweetclub.co.uk I have not been so excited in a long while. 

Anyway, I spent the best part of two hours deliberating my sweet choices from the copious selection available whittling my long list down to 8, (you can chose 8 selections yourself, or get them to pick a random selection for you) 

36 hours later there is a knock on the door and the post lady hands me this beautiful red box.I open it up, and it is beautiful wrapped with red tissue paper and my selection of sweets.

Millions
Gummy bears
Wham lollies
Fizzy belts
Sherbet pips
Fizz balls
Cable bites
Fizzy bubblegum bottles 

The introductory box costs just £7.95 including delivery! 

I have said to myself that this will be my only sweetie snacks allowed each month and after a week I've only finished one packet. It just may work for me! 

Even at full price of just under £10 I think this is fantastic value. 

Scanxiety

Scanxiety (noun) -  the tension felt by cancer patients regarding upcoming scans and results. 


It's that time again, every 3 months I have to go and have an MRI scan to check to see if my cancer has returned or spread.  

Because I am sensitive to radiation every 6-9 months I will have a CT scan too. 

Things were just getting back on track and I got home to the letter with the highly recognisable postmark, initially I thought it was my op date, but the envelope was too thin, shame really. Opened it up, and yes, my quarterly reminder that I had cancer/there were areas of suspicion on my last scans. 

In a way, I find the scans fairly easy, I don't have to do anything, except try and hold still for an hour, (easier said than done when you are a fidget mind) the results are a different ball game, two hour train to the hospital, up to 3 hour sit in clinic (like last time) which is a long time to be with your thoughts, never mind the time between scan and appointment which for me is around 3-4 weeks, because my scans go through a number of very separate MDT meetings (multi discipline team- surgeon, oncologists etc sit in on these meetings to discuss cases) 

Even though this will be my 3rd? It's not got much easier, but I've got to get used to it, it is part of my life now. 



As a side note, I saw this on Facebook today, I was rendered speechless. A patient with Ewing's Sarcoma, has been told by DWP she caused her own illness. 

DWP blames Ewing's patient for her illness  

The only words I can think of to use, my mum would disapprove of me using, but it really makes me mad. Cancer is an expensive business, I've burned through all my savings on general living expenses this last year, because my SSP and now ESA assessment rate doesn't get me anywhere. 

New Years Resolutions

Now I've never really been any good with resolutions, particularly because I never smoked, never really drank, was always fairly fit so could never really think of anything I could do.

This year I have come across the 52 week saving plan. Now ignoring the fact that the link is in dollars,  in pounds it's still a fantastic sum of money.

The aim being each week you save an amount, generally £1 in week 1, £2 in week 2 etc, but you get to Christmas and you are looking at £200 a month.

The plan I linked to allows you flexibility to pick and choose which amount you save each week, so those weeks where you are more flush, you cross that off.

Sounds good doesn't it?

This is my challenge this year, I'm on a very tight budget at the moment, but I am confident that I can do this. I want to be able to go on a holiday.

Let me know if you decide to do it, and I will keep you posted with how I'm doing.

Good luck!