Race For Life

Last year, 2 days after being diagnosed I ran Race for Life & with people's generosity & kindness I raised over £1,500. This year I have decided not to take part as I'm not emotionally ready but a good friend Hayley & a group of her friends are running. If you can spare any pennies (or pounds) to go towards this amazing charity then please click here

                  

Sexy Stockings

As part of my blog stats, I get to find out which keywords people have typed into search engines to reach my blog.

Just found that someone typed the following into a search engine:

site:blogspot.com "sexy stockings"

I wrote "Sexy Stockings" in an ironic way when I was talking about the hideous anti-DVT socks you have to wear during surgery....

Guess my blog wasn't quite what they expected to come up in the search engine!

#ComedyPervSearch

These are hot!

 

6 Weeks Check-Up

Can hardly believe it's 6 weeks since I finished radiotherapy, blimey. Anyway, 6 weeks post-rads you have an appointment with your oncologist who looks after your radiotherapy. It's basically to check you skin is okay, not inflamed or broken in any way.

Rob & I drove to East Surrey, I had this sick feeling in the pit of my stomach the whole way. I knew I wasn't having any scans or anything but it was just the association with the hospital.

I went into the waiting room and as usual they were running 1/2 an hour late which did nothing to help my nerves.

Dr Zap then called us into his room and we had a chat and then he examined my skin. He said it looked really good and healthy with no signs of burning or irritation - hooray.

Silly Game: Help Dr Zap Kill The Cancer Cells

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

Rads Recap - Week 4

Got back from my fab hen weekend, totally shattered but haven't laughed so much in ages - Thanks girls!

Monday - Anyway, back to normality of sorts today. Mid-afternoon appointment so wfh'd around it which was good as meant I could be a bit dozy! Am starting to really feel the fatigue now with lots of travelling every day. Luckily today's appointment was only 15 minutes late. It's also the last of the DIBH rads today as tomorrow I move onto the boosts.

Tuesday - Today I had my first of the boost sessions. Was an early appointment & I was actually seen earlier than my appointment time! As I don't have to do the DIBH on the boosts (the rads machine is just aimed at my scar instead of the whole breast) it was a much easier and quicker process. I got in, laid on the bed with my arms behind my head, had a few dots drawn around my scar and then the rads machine came close to my scar, made a noise for about a minute and I was done. 4 to go!!
After my appointment I had a catch up with Dr Zap's Registrar who had a look at my skin. She was very pleased with how it looked and said that as long as I keep moisturising with my Aqueous Cream(this is the cream that is recommended as a moisturiser to use during and after your treatment. It does not react with the radiotherapy. It is available to purchase from all chemists and some supermarkets - I got mine from Boots) then I should be lucky in that my skin won't break. Fingers crossed!

What the new machine I'm being treated on looks like:

Wednesday - Nice and quick today, no breath holding, just zapping the boost on my scar area. 3 to go!

Thursday - My skin is definitely more pink now & I'm super tired. It's good to have the long Easter weekend as a rest :-) Only 1/2 hour delay today. 2 to go!

Rads Recap - Week 3

So the magazines in the rads waiting area are kinda old.....

Yes that does say August 1996!!



Monday - Delayed by 50 minutes today. I've started to go a bit pink and sore now. I'm half way through though (Hooray!) so have expected this. I'm using Aqueous Cream 3 times a day so fingers crossed my skin doesn't break.

Tuesday - An hour and a bit delayed today - the waiting is SO boring because once you have the treatment, it's done within 10 minutes. Am really, really tired today as well, think it's starting to catch up with me. 

Wednesday - Massive delays again but at least I can see the end in sight! Fatigue is really catching up  with me now. So tired I had to have a nap when I got in!

Thursday - Feel more refreshed today but going to work, to radio & then home is really tiring. Rads perfectly on time today

Friday - Early one today as am off to airport in an hours' time to go on my hen weekend :-)



Guest Blog Post

Back in February I was contacted via this blog by a man called Cameron who asked if he could write a guest post for my blog:

Hi Joanna,

Thank you so much for your response! I came across your blog and really identified with some of your writing. My name is Cameron Von St. James and my wife was diagnosed with an extremely rare and deadly cancer called mesothelioma. Normally when diagnosed with mesothelioma, a person has a life expectancy of about 3-12 months, but after intense treatment and recovery she is still here over 7 years later. There are many steps to take as a caregiver when dealing with any type of harmful disease. Would you allow me to write an article for your blog about my personal experience as a caregiver to my wife? We struggled through so many hardships during this tough time, but found a way to make it through. I'd love to share our story of hope with your readers who might take something away from it. This is an important message to get out there so please let me know if you would be interested in seeing it and sharing it with your readers.

Thank you for all you do in making a difference,

Cameron

I know that what he is writing about is not about Breast Cancer but as I have such a strong readership base & number of pageviews, if I can help spread his message then why the heck not!

Please see below for Cameron's post:

Being a Caregiver to My Wife Strengthened Me

I will remember November 21, 2005 for as long as I live.  This was the day that my beautiful wife Heather was diagnosed with malignant pleural mesothelioma.  This cancer shook our small family to the core when we received the news of Heather’s diagnosis.  It came at such an unexpected time because everything had been going great.  We were just celebrating the arrival of our daughter Lily three months earlier.  Whatever joy we had at the birth of our daughter was cut short by this tragic news.

At a time when we had planned to be preparing for the holidays, we were seeking out treatment options for Heather.  We could go to a local university hospital, an excellent regional hospital, or to a mesothelioma expert in Boston.  We chose the expert in Boston, Dr. David Sugarbaker, because we wanted someone who had extensive experience in treating this form of cancer.  All we could do is pray that he would be able to help Heather.

Heather was struggling with worry and I also was trying not to fall apart.  I had a few moments where I nearly gave in to panic, but I mustered up as much courage as possible and made a determined commitment to be the best caregiver for her.  By becoming her primary caregiver, I had taken on a huge responsibility, and I never could have done it without invaluable support from wonderful family members and numerous caring friends in the community.

I stayed by Heather’s side as she went through seemingly endless rounds of surgeries, chemotherapy and radiation treatments.  A few times, I just sank to the floor and cried and gave in to my worries and fears.  But somehow, we managed to make it through even the worst of all these events and Heather is now cancer-free. It has been over seven years since the mesothelioma diagnosis, and she remains happy and healthy to this day.

We are so grateful to people who so generously gave their support and time to help us make it through this terrible ordeal.  I also learned a lot about being a caregiver and about sacrificing for someone else.  My experience in being a caregiver strengthened me and gave me much more confidence about what I could do and what I could handle.

I ended up going back to school once Heather’s recovery was complete.  I studied Information Technology and I even had the privilege to give the graduation speech for my class.  I know that being a caregiver to my wife equipped me to take on other challenges in life, and I shared these lessons with my classmates in that speech.  Now, I hope that by sharing my story with others, I can help them in their own battles today.

Update: 03/07/2013:

Hi Joanna,

How have you been? I just wanted to reconnect and let you know about a project that my wife and I are involved in that I thought might interest you. Heather and I participated in a short video about her cancer experience, and I thought it would make a great follow up to the article of mine that you posted a while back. We’re hoping to use this video to continue to spread hope and awareness to those who need it. If you wouldn’t mind sharing it with your readers, Heather and I would be so grateful. Here is the link to the video: www.mesothelioma.com/heather

Thanks again for your help! I hope all is well.

Cameron

Useful link: https://mesothelioma.net/mesothelioma/

Rads Recap - Week 2

So by the end of this week I will be half way through - Let's go!

Monday - Yesterday was Mother's Day and as I had an early appointment today it made sense to stay at Mum's overnight and then go on from there. Woke up and overnight it had snowed! Luckily it wasn't too thick and mum had offered to drive me. Got to the appointment in time, delay of only 1/2 an hour today! So confused how they can be late when my appointment was the second of the day! Ah well.

Tuesday - Snowed even more overnight. Horror stories of people stuck on the A23 for 7 hours so today's appointment was cancelled. Means I get one added onto the end on Rob's birthday which is pants but ah well.

Wednesday - Today Michelle had the day off so she kindly offered to drive me in. We left extra time because of the snow and I was actually seen EARLY! Stopped for a bite to eat on the way home and then into work for the afternoon.

Thursday - Work in the morning and then Col kindly drove me in. Running an hour late today & then the journey home was a bit pants as we got stuck in rush hour

Friday - Appointment in the middle of the day today & Rob was able to take me in.

Now for a fun wedding-tastic weekend of final food tasting, groom's party fitting, make-up trial & dress fitting!

Rads Recap Week 1

So I've now completed my first week of radiotherapy. My skin has been holding up okay, although it has gone a little pink and dry. It's bloody tiring going to work and to Guildford every day but needs must.

My first appointment on Monday was a bit of a pain because I turned up ready to go, having arranged all my rads times with work, asked my mum to help me out with some of the driving and fitted the rads times around other appointments (wedding dress fitting, final wedding tasting, hen party & holiday to the Norfolk Broads); so imagine my delight (sarcasm...) when they gave me a new schedule of times, all different & with 3 more added to the end which meant I now have rads on Rob's birthday and fecks up the Norfolk Broads holiday.... Not impressed.

I was nervous anyway and then to have been given that new sheet and then to be told that the machine had broken down earlier that day and therefore was running 2.5 hours late was not a good start :-(

Tuesday was better, they were (only!) running an hour late and they gave me a more concrete timetable and had managed to change the times of the important days. Still was looking at 3 extra sessions though #NotImpressed

On Wednesday it was all okay, had an early appointment (09:06) so they didn't have time to run late! They also changed the time of my wedding dress fitting and wedding tasting appointment back to what they were before which is good. Still have the extra ones at the end though, boo. Still, one more over and done with and then straight onto work.

Thursday I had a booster mark up where they drew on me with permanent pen to get the exact area they need to do extra zapping on when I have my boosts at the end of the 3 weeks. I managed to speak to Dr Zap himself (as he was doing the boosts) and asked him why all my times had been changed and why I had the 3 extra boosts added onto the end. He said that 8 boosts was the new standard but that he was happy for me to have 5 instead so that means I'm back to finishing the day before Rob's birthday - wohoo :-)

On Friday my appointment was perfectly on time but it meant I was out of there at 5pm. 5pm on a Friday in Guildford is not a pretty sight. Took me 2 hours to get home #IHateRushHour

Still I'm now 1/4 done - Huzzah!

Meeting Dr Zap

Maybe I should read this whilst in the waiting room....?

 

Today I went to St Luke's Cancer Centre in Guildford for the radiotherapy planning for the next stage of my treatment. The point of radiotherapy is to target any cells that may be left in your body after chemo and surgery. The amount (strength and duration) you need varies from person to person. I'm having 3 weeks worth with a weeks' worth of booster added onto the end.

  

Macmillan do a great information booklet and have a lot of info on their website about Radiotherapy. Click here to link to their site.

  

To make sure that the radiotherapy is as effective as possible, it has to be carefully planned. Planning ensures the radiotherapy rays are aimed precisely at the cancer, it makes sure that the cancer gets the prescribed dose of radiation while normal body tissues get as little as possible.

  

I arrived at my appointment and was taken through a consent form which detailed some of the side effects of radiotherapy, the reasons for having the treatment and a bit of information about the whole process.

 

I am having a new type of radiotherapy called Deep Inspiration Breath Hold (aka DIBH). It's for people with left sided breast cancers and the idea is to reduce potential cardiac damage from the radiation. Basically if you breathe in, you fill your lungs and rib cage with air which pushes the heart further back and therefore away from the radiation dose. During my treatment, I will have to hold my breath for 12 seconds. It's harder than it sounds because you're not allowed to exhale at all or let any air escape from your nose. The radiographers can tell exactly how you're doing on your breath holds because you have to wear some goggles that look like something from a computer game and have a little box taped to your chest. The box records your breathing and movement and then the goggles are connected to this. On the screen in front of your eyes you see two lines. One is a static blue box and the other is a yellow line which moves up and down in time with your breathing. When you do the breath hold, the yellow line moves up and the idea is that you get the yellow line into the blue box and it goes green. You then have to keep the line green (by holding your breath and staying very still) for those 12 seconds. If your green line drops out of the blue box and becomes yellow, the radiation will automatically shut off, it's very clever! Try holding your breath now and time it, it honestly feels longer than you think!

Here's some more information about DIBH

  

I had to undress my top half and put on my dressing gown and walk to the radiotherapy room (which was freezing cold!). There was a CT (computerised tomography) scanner there which basically scans you and takes a series of x-rays which build up a three dimensional picture of the area.

                                                           A CT Scanner

                     
I then had to lie on a fairly hard bed and was moved into a very specific position with my arms above my head (Dr Zap had already asked me if I had full arm movement, this is important as your arms have to be out of the way of the radiation).

They then put the goggles on me and I did a couple of test DIBHs to make sure I could get the yellow line to go green.

I was then taken into the CT scan, which is all open and nothing like the MRI Scan and had to do 2 x 12 second breath holds whilst staying as still as possible. You have to stay still so that the measurements are accurate and your exact position can be recorded. This record means the radiographer can check you are lying in the correct position every time you have treatment.

Once the treatment area for radiotherapy is finalised, the radiographer will make small tattoos on your skin. Nothing like as bad as it sounds I promise! They literally look like pen dots. I have 3 black ones. One in the centre of my chest, one on my left side and one on my right side. These show the therapy radiographer where to direct the radiation beams.

After that I was all done so got dressed & collected my treatment schedule, last one is the day before Rob's 30th.

I start on March 4th, bring it on.

 

 

 

Olivine

This evening I went to Olivine & Alison - a lady I met at the BCC Brighton Forum - came along too which was cool and she seemed to enjoy it.

Having not been there since November, it was a good opportunity to let them all know where I was in my treatment schedule (last time I went I was a fortnight post last chemo), to pick their brains about radiotherapy (my next lot of treatment) and to show off my hair!

When we got to Olivine, Marilyn. gave us something called a Big Box of Love, you can read more about the idea and how the company was born here. It was an enormous box and me & Rowena unwrapped it and I read the letter enclosed out to everyone. We then all got to unwrap a pressie :) I got a fab lavendar bath set, Alison got some bath salts, Rachel got Bathing Honey, there were nice notebooks, a make-up set, make-up bags and other bits - was really generous and what a lovely idea to send to people when they are having treatment to pick them up.

Sometimes at Olivine, we have someone coming in to talk to us, in the past there has been nutritionists, crystal healing, my new hair; and tonight we had a lady come in from Pretty Permanent Make-Up.

She spoke about what permanent make-up is and about the different types of permanent make-up that you can have. Although not my cup of tea (I'd be too scared of the needles!), the results did look pretty fab :)