Life Is A Rollercoaster

....you've just gotta ride it...... Never really liked that song truth be told but lyrics are kinda true for me at the moment.

Each morning I wake up & for a split second I forget, then smack, reality wallops me in the face & I remember I've got the big C.

Posted the link to this blog on Twitface 2 days ago & the response to it has been somewhat overwhelming. Why am I doing the blog? The main reason is that I find it cathartic. I've always been a "lists" person, write something down that needs doing & feel satisfaction at scribbling a line through it. For me, this (somewhat rambling) blog is a way of organising & processing my thoughts. Once it's written down it's real & it needs dealing with. Secondly (& maybe a little cowardly) it means I can tell people about all this without actually having to "tell" them. Lastly it may offer something to someone out there who might be going through the same horrors as I am.

The beauty of Twitface is that they allow people to get in touch who you may not have heard from in years & you know what, I don't care that it's taken something like this to hear from people, a kind word is like a virtual hug (i'm gonna call them Vugs) and I've come to find that vugs are pretty powerful things :)

Yesterday I had my monthly book club (no that's not a euphemism!) with the girls where we spent (I think a record time of) 5 mins discussing the book and the rest having a good catch up.

Yesterday also marked the arrival of an early birthday present in the form of a shiny new IPad, am already addicted!

Today A&P came over with a lovely box of all natural Lush treats for me, I'll be asking the chemo nurses if I can use scented things when I have my meeting on Monday - I hope so though coz they actually do smell Lush :)

I Have A Date

Just taken a call from Crawley Chemo Dept, Thursday 5th July I'll start the chemo. Blimey.

Choices

Rob & I went to the Fertility Clinic today at the Royal Surrey Guildford. Neither of us were sure what we were going to do when we were there so when it turned out we were simply having a chat I think it was a relief to us both.

Having thought that this part of the process would be easy, it turns out it's not quite so simple. In order for me to have this part of treatment, I would need to be blasted with a huge dose of oestrogen. As it looks like my cancer is oestrogen receptive this blast could actually increase the size of my cancer and would delay my chemo treatment by around 3 weeks. As such, Rob & I have decided not to proceed with this part of the puzzle.

In the future, if it turns out I am one of the 10% of women rendered infertile by the chemo then we can always use a donor or adopt.

One part of today that did make me angry was that if I had wanted to go ahead then Rob & I would have had to have found £3,000 because fertility treatment is not covered by the Sussex trust. The Dr at Guildford said he thought it was crazy because if I lived in Guildford (thus falling under the Surrey trust) then it would have been covered under the NHS! Seems like a postcode lottery and that maybe we have too many children in Sussex, ridiculous.

Next steps

We've been told that the next step is for me to have my eggs harvested. Sounds like some sort of alien abduction procedure to me but it needs to be done as chemo can make 1/10 women infertile. We have an appointment at Royal Surrey in Guildford tomorrow to start this going.

I also need to have an Echo-Cardiogram which checks my heart but that's not until the end of July which is too long to wait so Rob's on the case there.
Another letter today was about a further mammogram biopsy they want me to have on the second lump just to be sure it is defintely benign. Came as a bit of a shock but I would rather them be 100% sure than have it left in me and then for it to turn nasty.

Work are fully in the loop about everything and are being really supportive which is great.

Once the news is out there, the amount of people that have been touched by breast cancer is amazing, there are 5 people at my work alone that have been affected by this disease in some capacity.

Times Like These

Slept a bit better for the first time in days which I really needed. Put on my ipod as I was getting dressed and the Foo Fighters "Times Like These" came on. The lyrics seem pretty profound to me at the moment.

Got two lovely cards in the post today, one from G'ma & G'pa (Rob's grandparents):

I also had a fab homemade one from Hannah sending lots of love my way:

Went over to Rob's mum and dad's today to explain yesterday to them. It's good to have such a great support network around me.

Whilst we were out I had some lovely flowers delivered from work, luckily Leanne was around to take them in for us:

Later that evening I also got some fab flowers delivered from my team with a card reading "Get better immediately! Love and Support, The Buying Team". I'll certainly try guys!

The flat is starting to resemble a florists :)

Diagnosis

Waiting until 4pm today was the longest day ever. I literally ate a tablespoon of rice all day as I felt so sick.

Got to the hospital with Rob and Mum had taken the afternoon off work to be there too.

We were asked to go to the waiting room, hot, old and grim. If ever win the lottery I would donate money to hospitals to make their waiting rooms far cheerier places.

We met with Dr Stephen Houston and a lovely nurse called Dee. We asked loads of questions and they gave us loads of information.

So I now have a treatment plan in place.

Going for 'egg harvesting' - such a cold term(!) first of all as the oncologist told me that 1/10 women can be made infertile by the chemo treatment. Then pretty soon after this I'll start my chemo (potential to start on my 29th birthday!) which will be every 3 weeks for 6 treatments.

 I'll be on something called FEC-T, you can read a bit more about it here http://cancerhelp.cancerresearchuk.org/about-cancer/treatment/cancer-drugs/fect Side effects of the chemo vary from person to person and one could be hair loss. I have such thick hair so I'm hoping that I'll be okay. You can also slow/stop hair loss in some cases using a Cold Cap so let's hope I'm one of the lucky ones this time.

They'll then look at taking the lump out and then I'll be having radiotherapy.

They then talked about me being on a drug called Temoxifen for 5 years after the final bout of radiotherapy, during this time I can't have children. I always thought I'd be a mum by my early 30s....


So all a bit intense but at least I have a plan which has made me feel a little more in control.

Race For Life & Nerves

Today I was scheduled to do Race for Life which is a 5km race which raises money for Cancer Research and as I had booked to do it months before any of this even happened I was determined to go ahead and do it still. I ran it and the total is now over £800  http://www.raceforlifesponsorme.org/joannacugley so I am really pleased with myself for doing it and at the same time totally and completely overwhelmed by people's kindness.

Tomorrow I'll find out a bit more and therefore what my treatment plan will be. I know I'll be having chemo, surgery and then radiotheraphy but I don't know anything about how much, how long etc etc.

I'm worried sick about the side effects of the chemo, the prognosis and so many other things.

I'm due to be getting married in April 2013 and I am terrified I won't be able to one minute and then the next minute I'm using that as my determination focus.

I have no idea how to "be" at the moment and keep being sick because I work myself up so much.

I'm sorry if this part of the blog is rambling and doesn't make sense but I think I am just totally overwhelmed by everything. I am usually such a self-controlled, organised person, I think the fact that this is so not under my control is also one of the things that is working me up the most.

Limbo Land

Last night I didn't sleep at all, kept being sick, twisting and turning in bed, my mind was churning with non-stop thoughts. I don't know what to do, how to be.

We got up really early and walked the dog, trying to have some sort of normality.

Got back and a little later I got some beautiful flowers from Kelly:

A little later Amanda & Paul came over for a good chat. My phone was ringing and beeping with texts non-stop - feel blessed to have such lovely family and friends.

Mum and Colin went to tell Nanny today so she rung me a little later in tears which was fairly hard to listen to.

Later Michelle came over with some goodies (long since eaten):

and we had a good hug, cry, walk with Fagin and chat. Later Caroline came over and gave me a big hug, some lovely flowers (from her, Mo & Steve) and some choccy:

Feels good to be chatting with people but I can't stop feeling worried sick.

It feels like a crazy, horrid dream, like a rollercoaster that I can't get off. The organised control freak part of me needs answers, deadlines, timescales etc and I'm currently stuck in limbo-land.

I Have Cancer

The post title says it all, it's bad news: I have Breast Cancer. Invasive ductal and lobular. Grade 3 (it's agressive and 3.2cm in size).

We went to see Dr Stacey-Clear and I could immediately tell by his face that something was wrong. We've all seen the adverts, every 2 minutes someone in the UK is told they have cancer. He said to me that 1 of the lumps was clear but that the other was "nasty". We asked him to clarify and he said it was cancerous and that I'd need chemo.

The world started spinning and I started to tremble. Rob looked white. We were led into the "Cancer Room" again by Carol and she went off to get some information and Rob and I stood in silence, tears running down our faces hugging. I am in shock.

Carol comes back with a pack of information for us but it all passes in a blur. Rob is my rock listening, taking it all in.

Then we leave. An hour earlier the world was a completely different place. Now I have cancer.

Rob rings my mum, his mum, my dad, my boss, his sister. I text people not knowing how to tell them the news. There are tears, disbelief, messages of support. OMFG, I can't believe this is happening.

We drive home to pick up Fagin, drive to Mum and Colin's where Mum meets me in the drive with a hug and lots of tears.

Everyone's words are "We are going to beat this". I am going to try my hardest but I can't control what happens in my body but I know focus and determination is going to be key.

The Waiting Game

Spent this week trying to push Friday to the back of my mind but Thursday 21st June (despite being told not to) I caved and looked at Dr Google. I found a lot of scary information out there but I also found some great sites including http://community.breastcancer.org/ It's a fantastic site, based in America so some of the treatment, procedures etc are different but the feelings are the same. The "sisters" offer help and support to each other, I'm just praying I don't need to join their club.

Received some lovely flowers from Amanda & Paul

Poking & Proding

Rob drove me to East Surrey Hospital with us both feeling like this was still a dream. We went into the Outpatients Area which was the most dreary, dull and depressing waiting room I had ever been in. We got called in 20 minutes late and saw Dr Stacey-Clear (who we had seen privately at Spire before Florida) who said that the mammogram had shown up something "suspicious" that they wanted to look closer at.

He said that I would immeadiately be having an MRI, an ultrasound and a biopsy. It was then that I started to actually get more concerned, why would I be needing all these tests if it was just nothing.....

There was also a Macmillan nurse called Carol in the room which also concerned me, why would she be there if they weren't seriously concerned about this...?! Carol took Rob and I to a separate room and explained a little to us about why we were doing the things we were.

They led me to the MRI room where I had to have an injection to open up my vein in order for them to put red dye into me so that the MRI images were more clear. I was then asked to lie face down, given headphones (no music - just to block the noise) and the dye was flushed through my arm. The MRI was noisy, claustrophobic and seemed never ending.

Afterwards I was led to the waiting room for the ultrasound and biopsy and I broke down in tears in Rob's arms as I realised what this could all mean.....

They called my name and I went into the ultrasound room. The lady scanned my boobs and armpit and commented that it didn't appear to have changed since before Florida which was a good thing. She then asked Rob to leave and I was injected twice (as there were two lumps) in my left boob with a local anaesthetic and she then took samples from each lump in a procedure called a core biopsy.

I was then wrapped up in bandages and told that Carol would call me with an appointment time to discuss the results on Friday.

Let the waiting begin...

Mammogram Day

Rob drove me to Crawley Hospital for my mammogram. When we got there and registered the lady behind the desk also mentioned about me having an MRI which confused me as I hadn't had a letter about that. We checked in and then sat in the waiting room, it was all feeling a bit like a dream whilst I was sat there. I knew "older" ladies went for mammograms but I had never heard of anyone my age having one.

10am came and I was called into the room. Having a mammogram was a bizarre experience with my boobs being squished and squashed and to be honest it was fairly painful.

Funny to think that before I went there the main thing I was feeling awkward about was showing my Florida tanlines to the lady doing the Mammogram!

The Beginning

I had a lump in my left breast for a little while. I thought it was something to do with my glands being up but on 25th May I decided to tell Rob about it. He agreed it wasn't "normal" and asked me to go to the doctor's which I did. The doctor felt my boobs and agreed in the left one there was a lump between 2 and 3cm and said that it could easily be something called a "breast mouse" but that it could also be something that needed further investigation so they referred me to a breast clinic.

As we were due to be going to Florida on 29th May we decided to go private and saw Dr Stacey-Clear at the Spire Clinic on 28th May. He agreed I had a lump and then I had an ultrasound. The lady doing the ultrasound agreed there was something there that needed to be investigated but said that delaying anything by 2 weeks (our Floriday time) wouldn't matter.

Florida was fantastic but I did have the niggling worry about "the lump" the whole time I was there. When we got back from Florida I had a letter advising me of a mammogram appointment on Friday 15th June followed by a consultation, ultrasound and biopy on Monday 18th June.