Tag: cancer

Never give up #Sarcoma

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It’s been almost two years since my relationship with Sarcoma began. I hear of people being diagnosed with cancer and my heart skips a beat as I wonder how they are coping with the news. Now this is really hard to explain so please bear with me….. You think you would never be able to cope with hearing such life shattering news like “You have cancer” – but, actually, once you have processed the information, you carry on. I don’t know how or why, but you do. I’ve been told I have cancer, not once, but twice. Yes, TWICE! It’s upsetting (You can trust me on that!)….but you then commence on another journey – the fight for your life. It’s so hard to explain how, but you just get on with it. People say I’m brave, but I don’t feel brave – I am doing what most people would do.

Enough of the bad….
I’ve recently learned of a fellow patient who passed away from this disease. She was diagnosed in July 2013…. Whilst this is upsetting and terrifying, I try not to dwell on the devastating news and I try to focus on the positives. Six months ago, I heard from another patient who has a rare form of sarcoma. He was told that it was too advanced for any ‘normal’ treatment. Now it seems that he has a consultant as wonderful as my Mr Chandrasekar, who discovered a different chemotherapy treatment and offered it to him. He accepted and has been undergoing treatment. This morning he confirmed that the treatment is working. This is just amazing news and confirms that you should never give up….

Goodnight xx

Does cancer change you? #Sarcoma

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I get asked this question on a regular basis. And the answer is YES. I’ve found it so difficult to put into words exactly how I’ve changed but then I saw this post on a fellow cancer fighters facebook page. Thanks Donna for sharing it

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Thanks for reading x

It’s been so long! #Sarcoma

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Wow, I’ve not posted for almost two weeks, but I have been so busy (crap excuse!!!) so here’s what I’ve been up to….

Birthday and Rugby fun
We were at my sister Laura’s for Hot Pot and cake for her birthday-she even made a delicious Hot Pot. (We didn’t even think she could cook!!) While there, the lovely Jo Donkin text and asked if we wanted to join her and her mum, Veronica, in the hospitality suite at Wigan to watch the Rugby League World Cup quarter final England V France. Of course we said yes! and what a fantastic night we had. Wonderful food, great company and England won. Jo-thanks for inviting us, it was a great night, that was until John frogmarched us around the whole ground….to the wrong car park!!! Badbooks.com
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p.s on the table behind is Stefan Ratchford, Richie Myler and Micky Higham

New Friends
I am part of a sarcoma support group on Google Group Spaces. Through this site I have been in contact with people via email but last week I met one of the other members, Louise. We met for a coffee….and was still there three hours later….! It’s so nice to meet people who understand exactly what you are going through 🙂

Old Friends
We have not neglected old friends and had a fab night with Bev and John on Saturday (too much drink-but very needed!!!)

McTickle Time
I’m sure you can appreciate that cancer is one pain in the arse and can put extra stress on a relationship, especially as John is doing everything, caring for me, housework, running me to appointments etc. So John and I have made time for each other and started to enjoy ourselves….by Christmas shopping!! I’m sure he won’t agree though! I wanted to get as much of it sorted before these next two cycles as I may be too ill. We have also had a date night or two 😉

Random Side Effects
Randomly, the main side effect I have had after this cycle is…..MEMORY LOSS. I can walk into Tesco and not have a clue why, I will stop mid conversation struggling to remember what I was on about….would you believe this is “chemo brain” and is not uncommon. I’ll just have to start writing things down
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Some Good News
Dr Ali came to see me this evening to say that he reviewed there X-ray that I had this morning. He said that the lung mets appear to be shrinking! He wants to wait for the CT scan next week to be sure but they are not growing. 🙂

I do have more to tell but will share who I have further updates as this could go on forever.

Night xxx

It’s all about the hair…. #Sarcoma

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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

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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

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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

Sharkbite @sarcomauk

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Hey,

I thought I’d share a scar update for you non-squeamish people out there….

Before my surgery, my nurse said I would be able to tell people I’d gotten into a fight with a shark. Mr Chandrasekar has done too good a job for that story to stick….it’s far too neat!!!

The scar length is 44cm. My right leg is disfigured and discoloured from my knee to my bum, although the skin colour all matched after two weeks in Antigua….! At the tip, near my knee you will notice two small round scars, these are where my drains were. Funny how the drains are what I remember about the surgery as they were so uncomfortable and painful (ouch!!!!)

The leg may be ugly but it’s a small price to pay 🙂 Anyway, if you’re squeamish look away now.

Night peeps xx
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Facts of life….

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Flirty Thirty
When you are fighting cancer, you are constantly faced with the prospect of being sick, disfigurement, amputation and even death. It’s funny because it is only then that you start to appreciate the little things and the actual things that matter in life. I don’t take life too seriously and the main aim is to have fun and grab every opportunity you can. If you let things bother you then you will wear yourself down and become old before you know it!

Another thing is, you start to appreciate milestones – it was my 30th two weeks ago so we decided to celebrate in luxury on the gorgeous island of Antigua.

So what challenges did I face whilst taking a long haul holiday? Whilst the holiday was a success I did have a few issues;

1- Gatwick, the BA check in staff was lovely and asked if I wanted assistance to take me to the gate. Pride got in the way and I said no – I wrongly assumed we would be going from gate 101 as we had on previous previous trips to the Caribbean…. When gate111 announced, again, we thought it wouldn’t be too far….! wrong! It was a long trek and in future I will accept assistance where it is needed

2 – I can’t swim properly – I look like a frog with one leg 🙂 my right leg doesn’t function well enough for me to swim properly. What does John suggest? “lets have a race”…. 🙂

3 – people stare. I wore my bikini all week and didn’t hide my leg away. If people stared, tough! I didn’t care!

4 – pre planning is essential. We had a suite in the hotel and John had requested a low floor prior to our arrival. I didn’t think that this was necessary as there we only two floors of suites but when I got the I know that I would have struggled with the stairs on a regular basis.

5 – try new things. We hired a car and explored the island, even going to local bars and a lovely restaurant for both of birthdays. Before we went I was nervous about driving abroad but I’ve done it loads before and realised I was being silly. I’m so glad I over that as we had an amazing time.

We have got over the hurdle and there is now stopping me, we are already planning our next trip. New York, SanFran, Las Vegas? We’ll see…..

It was also John’s birthday when was there so it wasn’t all just about me (although it was really!!) 😉

When we returned home, we went out with family and friends to celebrate in true ‘McTickle Style’

Here’s me holding John up….
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I’m now thinking of how to top that with my 40th – that will be a double celebration as it’s the same time as my 10 year all clear! Although how can we top this view???
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Raising Awareness
I am keen to support in raising awareness of sarcoma in any way that I can and Liverpool Royal have asked if I will take part in a campaign to raise awareness next week. I am really pleased that I can support on this campaign and even if only one person seeks help on the back of it, then it’s time well spent! Watch this space…..!!

Next steps
Well I have my next check up in four weeks. Here Dr Chandrasekar will check my leg and conduct a lung scan. Prior to the last two I was anxious but now, I realise that they are par for the purse and they now feel part of life. This helps my mental state and I’m sure I will get through this one easier.

My leg is extremely painful at the moment and the knee joint is getting worse. Whilst I was fully aware that this is long term side effect of radiotherapy, I wast expecting it to be an issue so soon, especially as it has been better than this previously! I will speak to Dr Chandrasekar and Sarah to see what the best treatment for me now is.

Anyway, I have babbled on enough for one night 🙂 have a great weekend and enjoy the sun!

Set back…

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In my previous post Are Disabilities Visible (14 April 13) I forgot to mention that Mr Chandrasekar offered me my 2nd 12 week check up scan on my lungs.  This was originally due on 29th April but Mr Chandrasekar asked if I would like to have it there and then to save me returning three weeks later.  I panicked at first as I was at the hospital alone and anyone who has the big C will know how nerve wrecking these scans are….but I bit the bullet and agreed.  I’m pleased to say that it was clear.  I only need to go back in early August now for my 3rd 12 week check up 🙂  Only another 18 to go….(not that I’m counting!!)

I went away this weekend to Scotland to visit my brother.  For the 2nd night we went to the gorgeous hotel where he has booked his wedding to the lovely Sabrina.  It was a 1 and a half  hours drive away from Edinburgh but it was definitely worth it-gorgeous, remote and secluded.  We had a lovely time there but I somehow managed to trap my sciatic nerve .  If you have never had the pleasure of having a trapped sciatic nerve, trust me its the most awful pain.  I was in absolute agony and couldn’t even stand up by Sunday morning – I missed the breakfast, but John sneaked a sausage out for me (much to Dave’s embarrassment!)   🙂

I called the Scottish NHS help line and they made me an appointment at the Edinburgh Royal for Sunday afternoon. Once there, I was poked, prodded and tested for clots.  Thankfully, I was clot free – just had a trapped nerve – which was caused by the fact I have a (slight) limp and putting extra strain on my left recently as my right leg has been struggling.    The Dr prescribed me Diclofanec, Co-Codamol and Diazepam.  The Diazepam didnt help the pain, it completely knocked me out, made me woozy and dozy. (a bit like Vodka really!)

I fell asleep as we left Edinburgh (after taking a Diazepam) and woke up just as we passed Carlisle and thought we had been driving for an hour….no-poor John had been driving for almost 3 hours in terrible weather.  At least he had some peace eh?! (and I didn’t have to consciously endure his driving!!!)

                                       Was this how we got home from Edinburgh?funny crazy driver 11

And now….
So here I am 5 days later and still in agony 😦 I’m even back to using my walking stick :/  The Dr has now prescribed me with a painkiller that is specific to nerve pain, Lyrica.  I’ve been taking it for just over 24 hours and can feel it starting to work ,  hopefully I will start to improve over the next few days. 

PMA
The thing that has upset me the most about this is, that I got through major surgery, radiotherapy and the big C….and was still standing, then this stupid trapped nerve crippled me.  Its made worse by the fact that my right leg is still weak. 

Positivity will always help with recovery and my anger will only prolong my pain, so I have now changed how I view the trapped nerve: it’s a minor setback in my recovery.  It’s a wake up call that I need to slow down and take it easy, to stop trying to run before I can walk.