Cycle 2, hair fun and @mastermindquiz @sarcoma_UK

Cycle 2
Hey all, just thought I’d drop a line now I’ve had my 2nd cycle of chemo. I left Clatterbridge on Sunday and honestly have to say that I feel, well, ok. I’m confused as I’m on a combination chemotherapy of Doxirubicin and Ifosomide. Now don’t get me wrong, whilst in hospital I do feel sick but since leaving I’ve taken 3 anti sickness tablets whereas last time I took 3 per day for 8 days. Dr Ali did say that I may not suffer too much with side effects as I’m young, fit and healthy but I am certainly surprised.

I had lots of visitors when I was in hospital and my favourite was when Paul & Helen brought the Mini Macs. Maisie and Isobel were fascinated with Bert and how the ‘medicine’ went into my body via the PICC line. They weren’t scared and even touched my shaved head. Cutie Isobel had asked “What if Aunty Emma doesn’t look like Aunty Emma anymore….?” As soon as she heard my big mouth she realised all was ok….. 🙂

On Tuesday I had to go for my dressing on the PICC line changed. I opted to go to Halton as it’s closer than going to The Wirral. I have to say, it was so surreal on the CanTreat day ward. I was sat with ten other people, who were having chemo, with ten “Bert’s” beeping….CONSTANTLY! You see, when I’m in hospital, I’m in my bed, hooked to Bert, watching telly, having visitors and only see a few people having treatment. At the CanTreat ward you are sat in a circle, having treatment together. I found it really upsetting and sad. I better get used to it as I have to go each week for my dressing changed :/

Wiggin’ it
I finally got the confidence to wear my long wig this week……and I bloody love it!! I went to Debenhams and a lady approached me to tell me my hair was beautiful. There was a moment of uncomfortable silence as I wasn’t sure if I was supposed to tell her it was fake or what, so I just said thank you and she walked away muttering that it was just gorgeous.

I had my short wig on yesterday and went to the butchers. As the butcher was serving me, she commented on how lovely my hair was……!

The wig love is really boosting my confidence right now!

Celebrity Mastermind
Sarcoma UK gave me two tickets to be in the audience of Celebrity Mastermind last night. So off we went to the BBC studios for a date night. When we got there Ted Robbins was the ‘warm up man’ and asked for a volunteer to test the black chair out. Needless to say, shy old me ended up on stage…..I pranced about and was fake quizzed by the funny man while we demonstrated to the audience what would happen during filming. It was brilliant! When filming commenced we were sat right behind John Humpreys so we may just get on the telly!! When we were eating our meal in Prezzo afterwards, a lady asked if I was Emma, the test lady! Oh to be famous…..

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It’s all about the hair…. #Sarcoma

Hi all, just a quick update to say my hair has started to go now. Luckily I went to The Wiggins (Penny Lane, Liverpool) and bought two beautiful wigs this week. One is a bob for daily use and the other is a glamorous ‘Holly Willoughby’ style wig for when I go out out….

I only had to pay for the bobbed wig as the long one was free. This is because I have my chemotherapy as an in patient. The wig was £155 so I am very grateful and lucky that I qualified for this benefit.

Here’s a pic of me and John out and about today in said wig 🙂

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First week #sarcoma

I’m at the end of my first week after having my first cycle of chemo. I’m pleased to say that the drugs have been kinder than I thought. I honestly believed I would have been bed ridden and that John would be fanning my fever ridden body in a candle lit room….but I have been, well, relatively normal (no jokes there please!)

There are a few effects that I am having. The main way that the treatment has affected me has been fatigue. I am really tired and will sleep anywhere that’s comfy (beware if I come to your house – I nip to the loo never to return – you will find me in your spare bed snoozing…!)
Secondly, my appetite is non existent. I do not want to eat but I know I need to, the issue is that nothing appeals to me. I have been stocking up on rocket ice lollies and Pringles as these kerb the sickness but I know I can’t live off these. The thing that upsets me the most is that bacon and sausage knock me sick (now for those who know me, this is big stuff!!!). We are going for tea with the Scottish McTickles tomorrow and it’s already proving a challenge deciding where to go….

Work and cancer
A few months ago, I read an article where some employers make it difficult for cancer patients to return to work after illness. This really shocked and upset me as my employer had been so supportive during my absence last year. They are even more supportive this time and I can not stress how grateful I am and how lucky I feel to work for such a great company. I just wish that all patients could have the positive experience that I have with my employer.

Hairy stuff
I’m off to a wig shop on Monday to start trying some on so I can see what styles I like. Watch this space…..!

Finally a huge thank you to everyone in my department for my lovely gift and thanks to Joe for my goodie bag. They are very much appreciated.

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Chemo agreed….still get to go and see @JasonManford

Hello everyone, I have just been to The Royal to see Dr Ali to agree and sign consent for my treatment. I’m having combination chemotherapy and will have to stay over for three nights at Clatterbridge next week. I will then repeat this every three weeks for a further five seasons. I fully understand the side effects and I know this will be no easy ride but I know that with my amazing family and friends I can get through anything. I have never felt as determined to to anything as I do today. On a side note, as the treatment starts on Thursday I still get to go and see the lovely Jason Manford on Wednesday night 🙂 Have a nice weekend peeps xxx

Chemotherapy

Morning all,

Apologies for not updating last night but I was shattered by the time I got home from Clatterbridge.

I went to see Dr Ali yesterday to discuss my next options. Basically if I have surgery, they would have to do one lung, wait for that to heal and then operate on the second one. In the meantime there could be other cancerous cells lurking that may come to life, therefore he feels we should attack it in the first instance with chemotherapy.

I have two options:
1. standard chemotherapy – I would go once every three weeks for the chemo and I would repeat this six times.
2. trail – basically I could opt for a clinical trial which is being run by cancer research. If I opt for this I will be added to a database and the computer randomly picks if you will go on the standard chemo or a chemo which is usually used third line. Your results are then used for research purposes whichever chemo you end up having.

As my tumours are resectable it may eliminate me from option of the trial, so I am waiting to hear from them today or tomorrow. If I am eliminated I will have standard chemotherapy.

What does chemo do?
Basically the chemo will kill off any lurking cancerous cells in my body. It should either stop the three tumours on my lungs from growing any bigger or shrink them. I will then need to have these three removed surgically as the chemo will not get rid of them.
After two/three sessions I will be rescanned to see how the treatment is working. If the cancer isn’t responding to the treatment then Dr Ali will move me to another one.

It’s all very complicated and a lot to take in but I believe I’m in good hands. As Dr Ali said, there are a lot of positives to draw on and I am focussing on these.

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Results….

Just wanted to add a quick note to say that the scans on my leg were clear!!! The reason I was called back for a second MRI was because I had inflammation on one off my muscles-this is because it’s compensating for the ones that I have lost.

Today’s result is obviously fantastic news and means I can focus all of my energy on getting rid of the lung mets. I am at Clatterbridge tomorrow to meet the Doctor who will be taking care of me 🙂

Thanks to the Scottish McTickles for staying at ours, entertaining us and taking us to the hospital today.

And a BIG thank you for all your messages and support through what has been the most difficult week of my life.

More scans

I went for an MRI yesterday at Liverpool. For those of you who have never had one of these, it’s the noisiest machine ever. Noisier than building works outside your hotel when on holiday…! The kind radiology man asked me what radio station I wanted in my noise cancelling headphones so I told him I wanted Capital FM. I lay there patiently and on came…classical fm. I couldn’t help but giggle! During my giggles I knocked the alarm….. Quite comical…

During the scan, they came and asked me if I had injured my right leg, I politely reminded them that I had two muscles removed. Needless to say this unnerved me slightly so after the scan I asked what kind of injury they wanted to know about, and said that they wanted to know if I had a strain or a bang. Odd.

This morning I received a call from the MRI department to say Mr Chandra wants me to have a few more scans. He needs to see some more sequences higher up my leg as they didn’t get high enough. I am obviously worried.  I will be going back for the scan on Sunday so I can get the results on Monday. Thanks to the Scottish McTickles for offering to take me there (well when I say offered, I mean I asked:) )

I’m going to try to enjoy the weekend and the rugby – I’m already on the vino!

A big thanks to Vicki G for my gorgeous card and gift. It really means a lot xx
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Enjoy your weekend folks

PET scan

I had a PET scan today. (No jokes folks!!!) PET scanners are so expensive that they are only found in larger hospitals and they are not used to diagnose Cancer in the first instance, MRI and CT’s are used primarily. I’m lucky that I was given one within 24 hours of seeing Dr Chandra yesterday.

So what is it?
PET is a full body scan to detect certain cancers and will show 3D imaging of my body. (Pretty amazing stuff I’d say!). Before the scan I had to have tests, blood sugar, height & weight etc then I was moved to an isolation room where I was injected with a radioactive radiotracer in my hand. I then had to sit for an hour, in the dark, on my own, being quiet…for those of you that don’t know me, that was torturous!

I was scanned from my head to just below my knee, then I had to turn around while they did the rest of my legs. This amazing machine costs £1.8 million and doesn’t cover anyone over 5ft4 hee hee. It took over and hour and when I finished I was pleased to see my lovely clinical nurse waiting for me. I had a little weep but she instantly made me feel better.

The PET CT scanner at Liverpool
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Mental Torture
How do you take your mind off it?
Well that’s a difficult question to answer. The big C is constantly on my mind and no matter what I do, and it will never go away. I was genuinely expecting to get my first year all clear on 14th October so this has really knocked me sideways, and is mentally torturing me more than last years diagnosis. What’s making it even worse is that I can’t touch it….last year my tumour was visible and I could feel it – this is so much worse as I know it’s eating away at my lungs and there’s not a damn thing I can do about it.

Waiting for the scan results and treatment plan is also killing me – again for those who haven’t actually met me I’m probably the most impatient person the planet has ever seen…..! I will be keeping myself busy, in fact, tomorrow we are resurrecting ‘Cake Club’ at Chouxchouxbedoo on Newton High Street. I am determined to enjoy my food while I still can!

Goodnight peeps xxx

History repeating itself?

In 2012, the Monday before The Super league Grand Final, I was sat in The Liverpool Royal Hospital being told I had a grade III soft tissue sarcoma.

In 2013, the Monday before The Super league Grand Final, I was sat in The Liverpool Royal Hospital being told that this has spread to my lungs.

What does this mean?
Basically I have three lesions, one in my right lung – on the pleura (so this is the little bugger that caused my pleurisy!), and two at the top of my left lung. Tomorrow I will be having a PET scan and an MRI in the week.

Next Steps
Once I’ve had these two scans, Mr Chandrasekar will confirm my treatment plan. There are two scenarios:
i) chemotherapy
ii) surgery and chemotherapy

As he said, we are in for a rough ride, but this is a setback but I will get thru it. Chemo will make me poorly but it will also save my life.

I never thought I’d be starting this journey again, but I am, and as Mr Chandra said, it’s only set me back 3-6 months so what’s that in the grand scheme of things?

I feel more positive and determined to kick some butt!!

On a side note, I hope history doesn’t repeat itself on Saturday and I hope that Warrington Wolves win the Grand Final this year. Come on boys!

Take care xxxx

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