Scalp Cooling Petition

I had an email through the other day that went like this:

Hi Jo;

I've been reading your blog and am in awe! You are a true inspiration!

I am currently raising awareness of a national petition for scalp cooling to be the standard treatment for all cancer patients. Was scalp cooling mentioned to you?

Have a look at our website and see if it's something you would be interested in helping us raise awareness for :)

http://www.coolheadwarmheart.co.uk/petition/

If you would like to sign the petition then please do via the link above.

I was lucky enough to be offered the Cold Cap (Beautiful(!) picture here) but unfortunately for me it didn't work. I hadn't realised that Cold Capping was not standard practice and just assumed that it was offered to everyone.

Cold Capping machines are very expensive and I was lucky enough that Comet Ward had a fantastic fundraiser who raised enough money to buy a machine.

Some oncologists are also not convinced by (and therefore don't offer as standard) Cold Caps as they believe they increase the risk of scalp mets. Basically Cold Caps stop the drugs working by reducing the temperature so mucho that they don't work in that area. Therefore attempting to save the hair follicles. Therefore if there are secondaries in the scalp, they would not be treated by the chemo.

I can understand that some people would prefer NHS money spent on other things but I do think that people should be given the choice whether or not they would like to use the cap.

It's a difficult debate but I think in the end, it all comes down to freedom of choice.


Honeymoon

Mexico here I come :)

Best Day Of My Life

I'm getting married in the morning!!

Can't believe it's finally here, bring on the next chapter of my life :)

Here's a fab poem from Colette:

Jo Cugley is a lovely girl and soon to be a Clarke
She loves nothing more than time with Rob and hearing Fagin bark
Her world was shattered when last June she was diagnosed aged 28
But she's got through her treatment and now she's looking great.

She's helped so many people with tips on her fabulous blog
From hair loss, nails and skin care to spending less time on the bog
From vugs, to spoons, to the Olive Tree, it's a fascinating read
And for those just starting treatment it's a comforting place in their hour of need.

She's also a clever cloggs and beats her friends at WWF
I must remember that's a word game and not blokes in shiny pants with a ref
She deserves some fun and happiness after all the bloody stress
So it's lovely to hear, in her wedding dress, that she feels like a princess.

We wish you and Rob a marriage filled with love, laughter and fun
And who knows with some luck maybe a daughter or son
So Jo enjoy your special day as it will be here very soon
And have a brilliant time together wherever you end up on honeymoon!

And one from the bridesmaids

Man I feel special!

Girls on Film

Today my BCN Carol & a guy from Medi -Home came to film me!

 

Basically my hospital and Medi-Home are up for an award because of the good work they do in allowing people to go home after surgery. I had Medi-Home visit me after both my WLEs and it was so nice knowing in advance of surgery that I wouldn't be staying overnight in hospital.

They wanted to film me for a video they have put together as part of their nomination for the award, so when they turned up, I thought they were going to ask me questions but I was just expected to talk! Somehow I did the spiel in one take and they were happy with what I said so that was that!

If Medi-Home & East Surrey win the award then I'll be shown as part of the video!

Willow Foundation

Through one of the forums for Younger Women with Breast Cancer that I am a member of, I found out about an organisation called The Willow Foundation.

Willow Foundation is a national charity established in 1999 by Bob Wilson and his wife as a memorial to their daughter, Anna, who died of cancer aged 31. The charity receives no government or lottery funding and is totally reliant on the generosity of individuals, companies and trusts to fund its work.

WF provides 'Special Days' for seriously ill 16 to 40 year olds through the provision of special day experiences. The idea behind it, is that the special day provides beneficiaries and their loved ones with a break from the realities of their diagnosis and treatment. At a time of uncertainty, spending quality time with family and friends can help restore a sense of normality, boost confidence and create precious memories for the future.

Reading the eligibility criteria on their website & talking to my BC Forum friends I realised that I was eligible to apply, so I downloaded the form from their website. Once I'd filled in my section, I had to get a medical professional to fill in another part (my BCN Carol kindly did this for me) & then posted it off.

Today I found out that my application has been accepted! Yahoooooo! Rob took the phonecall when I was at work so I don't know very many more details and I have to call them back next week to start organising my Special Day :-)


Click here for Willow's Facebook page
Click here to follow Willow on Twitter

Rads Recap - Week 5

Only 2 sessions this week, then it's all done! Had a fab long Easter weekend, my second hen do, Cream Tea at the Hilton Green Park & then onto the Below Zero Ice Bar London

Tuesday - No session on Monday as was Easter Monday. Today they were running an hour and 15 minutes late - yawn! Still it was a boost again so over nice and quickly. I am getting a few stabbing pains around my scar now but this is apparently completely normal - just annoying!

Wednesday - The last one is done - YAAAAHHHHOOOOOOOO!!! Yes there was over an hour delay but I don't care coz I have finished active cancer treatment!!!!! :-) Today is also my fiancé's 30th birthday - what a good day!!!!

Rads Radio

So I've spoken to a few girls who have had rads already and they all mentioned I should listen out for the music played each day in the rads room. It's all down to the radiographers choice so some people have had rock and others have had elevator music.

I thought it would be like a countdown type thing if I kept a record of what is played in the rads room each day.

So here goes starting with yesterday's choice of.....

1. You Don't Know You're Beautiful - 1D (Ironic as I felt really beautiful lying in an awkward position with my boobs out to the world #sarcasm)
2. Jar of Hearts - Christina Perri
3. Summer Sun - Texas (which contains the line "Here comes the Summer Sun, he burns my skin" #irony....)
4. Beautiful Day - U2 (it was sunny yesterday, today was peeing with rain so not such a beautiful day!)
5. Marry You - Bruno Mars
6. I Just Called to Say I Love You - Stevie Wonder
7. Day 7 was cancelled because of the snow! Booooo
8. Girls Just Wanna Have Fun - Cyndi Lauper
9. Today there was radio silence - no music :(
10. Cheers (Drink to That) - Rihanna
11. No music again today!
12. They love a bit of Cyndi Lauper - Girls Just Wanna Have Fun (again!)
13. Beneath Your Beautiful - Labyrinth & Emeli Sandi (Like the song but the grammar offends me! #GrammarNazi) 
14. Big Big World - Emilia
15. Cleopatra's Theme - Cleopatra (old school!)
16. Come Away With Me - Norah Jones
17. Radio Silence today as was in a different room and being marked up for my boosts.
18. Hot Right Now - DJ Fresh - Pretty dance inducing music seeing as you're supposed to be lying as still as possible!
19. The Lazy Song - Bruno Mars
20. Vertigo - U2
21. The Final Countdown - Europe (what a tune to finish with!!)

Give Hospital Car Parking Charges the Boot

Many cancer patients face lots of unforeseen expenses as a result of their diagnosis.

 

In 2010 the government recommended that regular visitors to hospital should receive free or, at the very least, concessionary parking.

 

Despite this, cancer patients face a lottery with some hospitals providing free parking whilst others charge up to £3 an hour.

 

Macmillan are currently campaigning to make car parking charges free for cancer patients. Over 18,000 people have already backed their campaign to stop this unfair tax on illness.

 

Can I ask you all to take 2 minutes just to sign the petition by clicking here

Mike's Marathon

My friend and work colleague Mike is running the Brighton Marathon on 14th April in aid of Macmillan.

 

 

 

 

If anyone can spare a few pennies (or pounds) to go towards this fantastic charity it would be very much appreciated.

 

Please click here to sponsor Mike - thank you very much :-) x