Moving on….

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Hi all,
Haven’t been on for a while so thought I’d update what’s been going on.

I’ve been back at work for a month now. I’m in a new job which is really good and keeping me busy. Everyone’s been great and it feels like I’ve never been away. My employers, my boss in particular, were fantastic in the support they provided when I was off, which made my return to work so much easier.

I went to a Sarcoma support group two weeks ago. It was good to see people who have or are experiencing the same illness. It makes you realise you are not alone and that someone does understand!

While I was off work my lovely colleague Liz held a ‘Cake Sale’ in order to raise funds for Clatterbridge Cancer Centre. Liz makes AMAZING cakes and managed to raise a whopping £405. Liz and I went to their fundraising office to take the money and they were so appreciative of it.  After gift aid, the total raised from Liz’s cakes and Team McClozzer’s sober January exceeds £2500!!!! This is amazing and I want to say a huge thank you for your support.

I went to see Dr Alam yesterday. She wanted to check my leg after my treatment. It all looks good so don’t need to see her for six months now.  My next ‘check up’ and lung xray is at the end of April. Whilst it is scary waiting for each one I am determined to ‘move on’ and live life to the fullest…..starting with a trip away in two weeks. Cheeky, especially as I went to Amsterdam 4 weeks ago 😉

We are celebrating tonight. Its my brothers engagement ‘do’ so he has traipsed down from Edinburgh with 7 Scottish people who are all so excited to party in the hotspot that is Warrington…!!

Have fun and will update again soon.

Getting there….

I know I haven’t been on here or a few weeks so thought I’d do a quick update.

While I was having radiotherapy the nurses told me to ensure my scar was treated with Aqueous Cream on a daily basis to reduce the risk of burns on my leg. I never thought to put the cream on the back of my leg and with four days to go, I really started to feel the effects of treatment at the rear. My leg turned red and was tender to touch.

After radiotherapy finished the burns were just horrendous. My skin was charred and so painful I couldn’t even sit down. I ended up being in bed most of the time as this was the only place I could get comfortable. Poor John was almost kicked in the face on a daily basis when he was applying cream to the area!! I used all methods of healing that had been provided; mepilore pads, intrasite dressings, numerous creams and painkillers. After ten days or so I started to see an improvement and the skin started to fall off- it was still sore but I was more mobile. As the skin fell off, my scar turned from a thick, ugly red line to a neat, skinny white line. It looks and feels so much better!!!

I was worried about the burns as we had booked a short break to Amsterdam and I really thought we’d have to cancel …….but we made it!! We had a fantastic few days away but the realisation of how hard holidays abroad are when you have a disability really hit home. Buildings in Amsterdam are so small and the toilets are often up/down stairs. And the stairs are usually very thin and hard to manoeuvre! We love the city and will definitely go back (for a third time!!) when I’m fully recovered.

Well am back at work now which is fab….won’t bore you with that now and will update next week.

G’nite!
Xx

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Radiotherapy in numbers… #Sarcoma #Cancer

5s numbers

 

After:

  • 30 days
  • 2700 miles
  • 180 trips on 3 different motorways
  • 300 litres of fuel
  • 2400 minutes travelling time
  • 58 arguments about Johns driving
  • 4 times John took the wrong turnoff (at the same point from M53-M56)
  • 21.5 hours appointment waiting time
  • 785 minutes appointment time
  • The machine broke while I was on it twice
  • 180 beams of radiation
  • 1230 seconds of radiation

…it is finally over!  No more Radiotherapy for me!

Am off out tonight with family and friends to celebrate the end of this journey and the start of the next (cancer free) one…!!

It’s not me…

Ever since we met last year, it’s fair to say I’ve had an unhealthy obsession with you. There have been endless searches on the internet, constant conversations about you, even a blog dedicated to you. Wow, you really have took over my life.

You have showed me who my real friends are and of those friends, who is prepared to go the extra mile. You have proved that there are some amazing people who are unsung hero’s who dedicate their lives to helping others. You have showed me that it is so important to grab each opportunity that comes our way, to savour every moment and everyone in our precious lives. However, whilst there are some good points to our relationship, I can not (and will not) forget the bad things; you have made me cry (a lot), you have made me so god damn angry and most of all you have made me sad.

I went to The Royal today. The last time I went, I walked away with you….this time (my 1st 12 week check up) I walked away clear; without you and without any of your family or friends in my lungs. I know that I will get the full all clear in 21 months.

Walking back the car made me think: This kind of relationship is no good for either of us, so it is today that we must say goodbye. Whilst I appreciate that, given the opportunity, you would cling to me with all your might, I must stress to you; it’s not meant to be.

At the end of most relationships you see the head tilt and hear the patronising tone accompanied by the words “it’s not you, it’s me”. However, I would like to say – “it’s not me, it’s YOU”

Goodbye Sarcoma and I hope we never meet again.

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Glamsticks…

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I received my new walking stick this morning. It is a sparkly spangly stick covered in over 2500 gorgeous bling rhinestones. I went for a fold away stick as I don’t need it 100% of the time, but I find myself unnecessarily using it as I have nowhere to put it.  I want to reduce my dependancy on the stick, but I know that I will need it on holidays wether its down to lots of walking on city breaks, or safely getting to the pool (I’m not very good walking on wet surfaces!!).  At least I can return my temporary stick to Clatterbridge in the morning, honestly the orange sticker shouting ‘Clatterbridge Oncology Dept’ was enough to force me to try walking without one…!

A huge thanks to Glamsticks.co.uk for my beautiful custom made stick.

 

How do I feel? #Sarcoma

I have six sessions left (Not that I am counting!!!!)

There have been huge delays this past week, one day was even five hours waiting, so I have slid to morning appointments. This should minimise the risk of delays and also reduce the time of the delays if they do happen. Surprisingly, the dreaded M6, M56 & M53 weren’t too bad to tackle this morning!

I am so excited to be finishing treatment next Wednesday but one thing is bringing me down….here goes the Emma rant….!

People keep telling me (Yes, telling me) the following:

1-I will be tired – I need to be honest here, I am a lazy cow anyway. I doubt I will be more tired than normal 🙂

2- don’t rush back to work – hello….5 months off is long enough thank you very much

3- relax – my life is hardly full of all night raves, pub crawls and zumba classes. Besides my treatment, I do nothing but relax.

I am 29-I am younger, fitter and healthier than older people who may experience cancer. I am coping, my body is coping and, most importantly, my mind is coping. What is bringing me down is the constant expertise of people who tell me the above. I appreciate that people mean well but I need to get back to normality. My Dr is absolutely of the same mindset too which is great.

So please, when you talk to me, ask if I’m ok, ask about treatment, talk about you, the weather, gossip, just talk about something positive. Please don’t tell me how I should or will feel because I fear the same conversations and reassuring people will wear me down….

I don’t mean to whinge but please take this as a message of reassurance that I AM OK!!

Final Note
On a final note, I would like to thank the lovely John who has been absolutely amazing. He’s been the one with me 110% through this journey. He has laughed with me, cried with me, held me, looked after me and he has took me to Clatterbridge on a daily basis. I seriously could not get through this without him. One thing I have learned from my daily trips to the Wirral, not everybody has somebody….

I also want to say a huge thank you to everyone who reads and posts on this blog.

Goodnight xxx

Single figures….

Old Friends
Yesterday on my way to my session I bumped into Hannah. Hannah was in the next bed to me in Broadgreen after having a soft tissue sarcoma removed, also in her leg. She only has three treatments left – I don’t know how we have got this far into our session without bumping into each other! Was lovely to see her doing so well and will see her again later in the month when we go for our first of our 12 weekly check ups.

Normality…for my sanity
I will be returning to work on 18th February. Can’t wait to get back to routine and normality because I am bored and there is a risk to my sanity if I have to stay off work any longer….!!

I had my 21st treatment today….that means I only have 9 sessions remaining. Woop freaking woop!

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Take it easy and be careful if the snow hits us tonight!

Sarcoma Patient Support Meeting…

Cake & Sarcoma
John and I attended a Sarcoma Patient Support Group Meeting last night at the Roy Castle Lung Cancer Foundation in Liverpool. The group has been set up by Patients, Sarcoma Nurses and Macmillan, and provides an informal environment where patients, carers and family members can meet other people who have or are suffering from this illness. (There is also tea and cake!!)

How Rare?
In the room there were ten people, all different ages, who have had sarcoma at some point in their lives. Each and every one of us had a different kind of sarcoma, all in different parts of the body, which really highlighted the rarity and diversity of this form of cancer.  There are approximately 3000 people diagnosed with 72 different kinds of sarcoma each year – that’s only 41.6 people per type of sarcoma!

Buddy Scheme?
Rob, the Chairman of the group, is working with Macmillan to understand the feasibility of running a ‘Buddy Scheme’ for sarcoma patients.  A Buddy would be someone who has been disease free for 3 years plus and they would be there as a source of support for newly diagnosed people.  I really think that this would be a wonderful thing as it is extremely difficult to speak to people about your diagnosis when you have something so rare, and you are just as confused and scared as your family.  When I was diagnosed I just wanted to speak to someone who had the same illness but it was impossible to do as it just isn’t as common as other cancers/illnesses.

I left the meeting on a positive note.  It is extremely hard to remain positive when you are in the throes of treatment and you have another x-ray coming up, but seeing other people, who have SURVIVED this, who are POSITIVE, and who are there to SUPPORT me really helped me mentally. I am less nervous about my x-ray and am back on the UP!

P.S

Team Mcclozzer
John has been approached by The Clatterbridge Cancer Charity to ask if they can do a press release on The Teams fundraising efforts!! Watch this space!