We've come so far..... Guest Blog by Emma

WARNING - LONG POST - WE HAVE A LOT TO UPDATE YOU WITH.....


So I'm writing Tom's blog for him for a few reasons really. Firstly, we've had an awful lot going on lately, I think we've all been trying to keep up with life hence the lack of blogging which Tom does apologise for by the way, he would have liked to have updated sooner... Secondly, Tom has been struggling a lot recently with his leg and controlling the pain, more about that later... And lastly, we thought it might be nice to talk about what's been going on from my point of view.

Being the one who has had to watch Tom battle cancer for the last 6 months has not been easy. I don't think I have ever felt so helpless in all my life, just wishing I could take some of the pain away or take my share of the treatment he has had to endure. It really hits home how a diagnosis of cancer doesn't affect just the 'patient' but all those who like and love them dearly.  I know that I have never been as proud of anyone as I have been of Tom, he has handled everything so well and his strength of character has amazed me. 

Well where to start... I suppose from where Tom left off...

Arlo's Arrival

Arlo Thomas Lynch arrived on Wednesday 6th April 2016 at 4.10pm weighing in at 7lb 2oz - a little ray of sunshine and the second little love of our lives, the first being his big brother Alfie.

Arlo has kept us quite busy... him and his big brother have also been the ones who have got us up every morning and have given us a reason to keep moving forward, I know they have made Tom and I smile at times when all we've wanted to do was hide away... Arlo has certainly kept us busy, it seems like such a long time since Alfie was a baby, we've definitely had to brush up on some of our techniques... Nappies being one!

Alfie's Birthday

On the 22nd April our big boy turned 3! How did that happen? Alfie Joseph Lynch has rocked our world for the last 3 years, he is a fantastic little man and has become a very loving big brother. We had a family party on Alfies birthday followed by a party with some of his friends at the weekend - our little man chose Spring City in Liverpool (trampolining) for his venue. It was nice to have a bit of normality back in our lives....

Last Minute Get-away

We booked a little holiday the week before Tom's operation, only Wales, but we enjoyed every single minute. Alfie didn't want to leave his holiday home, he had a fantastic time and we all enjoyed a little bit of family time before things got tough... I'd love to say it was relaxing but with a newborn and a 3 year old it certainly was not, it was however our kind of holiday.

Wednesday 4th May 2016 - Operation Day

Tom had to be at Broadgreen Hospital by 7.30am so it was an early start for us... My sister looked after Alfie for us and my nan came with us to help me with Arlo... Our plan for getting to the hospital was very regimented, our itinerary was perfect and we made it in good time. When we got to the hospital 'our shit got very real' so to speak! I cannot tell you how Tom felt, he kept very quiet, those of you who know Tom will know that he is a quiet chap, he didn't say it but he looked worried and I felt sick... Leaving him there was horrendous, Tom wanted us to leave before they took him down to theatre, as much as the nurse tried to convince me that it was just so he could use the lav in peace I knew it was because he didn't want to draw out the goodbyes... Tom had a cuddle with Arlo and we said goodbye.... I left quietly and I cried....

It was the longest 5 hours of my life... When I'd had my caesareans with the boys Tom had sat right next to me and stayed with me, I hated that when he needed me I couldn't be there with him. I knew he'd be looked after and that the operation was literally life-saving, we'd been waiting for it since the day he was diagnosed, it would hopefully mean that the cancer was gone. Worry however, definitely got the better of me.

Tom was taken to recovery after his operation and then up to his ward about an hour after that... Within seconds of hearing this we were on our way back through the Mersey Tunnel to get over to Broadgreen and see him. When we got to his room he was awake but he looked swollen, his face, his arms, everything. The way he held his face was weird, they told me it was because of all the drugs he was on, so I suppose it was normal. 

The nurse said that the operation was a success and Dr Yin had successfully removed the tumour with clear margins, Dr Yin had spent a lot of time working on Tom to ensure as little muscle would be removed as possible and to minimise the damage to his nerves and blood vessels, he was however left with a 12 inch scar on the back of his leg, a small price to pay I suppose - Tom already has his shark bite story worked out for the boys. I thank god that our local GP was clued up enough to get Tom diagnosed correctly and that Dr Yin, a Specialist Sarcoma Consultant, Renound Worldwide was the person operating on Tom and overseeing his care.

Tom was kept in hospital for two nights after which he was allowed home. Toms request not the hospital's dismissal.

For 3 weeks Tom was not to bathe or shower and he was to leave the dressing on his leg. The aches and pains gradually lessoned until Tom got his mobility back.

26th May 2016 - Results Day

Back to The Royal we went - Dr Yin was quick to tell us that the tumour had been tested and there was clear margins right the way around it. The radiotherapy had killed between 50-60% of the cancerous cells. Everything had done its job.... Tom was Cancer Free!!! He needs to have scans regularly to ensure that the cancer has not spread, every 3 months for the first two years, bi-annually until 5 years and then annually until 10 years, at 10 years he will be released... Cancer free! WOW! 

Sarah, our lovely Sarcoma Nurse, and all around fantastic person, that woman should win awards for the positivity she oozes, then removed half of the staples in Toms leg. From Tom's face it looked like it hurt...a LOT! I'm surprised his thumb was still intact, he was biting on it something rotten. We left hospital with an appointment to go back the following week to get the rest of his staples removed. We were also on Cloud 9! The day had gone as well as it possibly could.

Within days Tom was in agony, he could hardly walk, he said the pain in his leg was excruciating. How he got through the week I dont know... When we went back the following week Dr Yin said that his leg had become infected (not uncommon) with this type of operation... Ok... Two weeks of antibiotics prescribed... Dr Yin also advised that there was now a large 'void' in Tom's leg and that fluid was filling it causing some of the pain. Two sets of stronger controlled painkillers were prescribed and Tom was sent on his way... Tom got a royal telling off from Sarah, apparently none of this is uncommon, however if Tom had told them earlier they would have been able to have controlled his pain levels more effectively. Tom now knows that the minute the pain becomes more than an ache he is supposed to advise them.... I now know this too so next time I tell him to see the GP and he doesn't listen to me I'll be making the appointment for him...

It's now Sunday and Tom is slowly getting better, he is walking a little bit more but is still in a fair amount of pain. Hopefully by Thursday when he goes back to see Dr Yin things will be a lot better for him pain wise... I'm looking forward to getting my man back, he has been so sad the last couple of weeks, he's dying to play with the boys again and get back to normal. Time will tell..... 

Goodbye from our little corner of the world for now.... I'll leave you with some pictures of my gorgeous boys to look at.

Emma xxx

PS - our little house is now sold and we have had an Offer Accepted on a home we love.... The big move is being planned for JULY so fingers crossed Tom is more himself by then and can enjoy helping!

Busy Times

It has been a long time since I have updated my blog. We have been so busy that I have forgotten about the cancer in my leg to be honest. Since the constant radiotherapy sessions have finished there has not been much to report on in relation to the cancer.

I have had a pre-op and an MRI scan to check on the progress of the tumour, but have not heard back on that. I can tell the radiotherapy has reduced the size of the tumour just by the feel of my leg. The skin has also repaired itself nicely and I am nearly back to 100%. Just in time to have it sliced open.

I have my operation next Wednesday to remove the cancer and I have 100% confidence in Mr Yin to work his miracle. 

I must admit though, I am scared. The gap between the RT and the operation feels like a lifetime, so much so, that I have completely focussed my attentions elsewhere. Its hard not to with the arrival of Arlo Thomas Lynch into the family. He is such a placid and quiet little boy, unlike his big brother Alfie. 

I love our little family so much, there are so many positives to focus on that I have put aside the cancer subject for a while. As I am typing this though, and realising that the operation is only a few days away I am getting scared. Scared of what though? I am not scared of the operation, I am scared of how I will be afterwards. I really hope that they will remove the tumour without having to remove to much of "me" with it. 

Emma and I have also put the little house we live in up for sale. We need a bigger place, especially with little baby Arlo arriving. Moving house is the most stressful thing we do right? Nah.....I do not feel one bit stressed about anything in my life......cancer......selling a house.....no. I feel so much at peace with myself recently, its quite liberating. I do miss work though, I miss making a difference, I miss bringing money in, I miss feeling useful. 

Arlo, Alfie, Emma, the most beautiful things in my life will see me though this, and I appreciate every minute I have with them.......xxx

Post Radiotherapy Pre Surgery - Not for the squeemish

I am currently in the recovery period after radiotherapy which finished almost 2 weeks ago now. During a recovery period, I'd imagine its best to kick back with the feet up taking in as much daytime telly as possible, but for me, I have continued working which cannot be helping the healing much.

That will have to stop this week, which means finishing work a short period before I intended. So I am planning to call it a day this Thursday and enjoy the Easter holidays with the family. There is also so much to sort out for myself and Emma in relation to our hospital stays, and both outcomes will be life changing. We are really excited about Arlo joining us soon. 

The pain on the back of the leg is getting worse. Surely this is now at its peak point? Not only has the skin gone from the back of the knee now, but it has also disappeared from the back of my thigh. Not a pretty sight. I have had to modify my Polymem dressings now to accommodate the larger area which needs covering. A delicate operation which involves the use of lots of electrical tape.

I was recently prescribed Zapain by my GP to try and ease the unpleasant pain, but that doesn't seem to be having much affect, so last night I stopped off at Clatterbridge to see Bev the Radiotherapy Support and Liaison Practitioner who arranged for me to collect some Oramorph which should do a better job. I'm a bit reluctant to start taking that until the weekend though. The side effects will be enough to stop me from driving, which is not going to help me see the week out at work. Bev also took a swab of the area on my leg to test for infection so I should hear about that in due course.

On Saturday I attended Clatterbridge to take part, with 11 others, in the Oncologist examinations. Trainee Oncologists/Registrars came from all over the world to carry out a practical segment of their examinations and of course, this is best done with real living patients. They were called in the room one at a time to assess the condition and to come up with a diagnosis and prognosis, and basically just looked at each patients symptoms and asked plenty of questions. It was clear that they were very clever people, although their nervousness was obvious.

Hopefully this is as bad as the side effects are going to get. It reminds me of the Terminators face

RT Side Effects

The knee pain is not getting any easier at the moment, every little movement is quite a struggle, but I feel sure it might have peaked now and can only get better. The back of the knee is not something I look at often, and I was quite surprised at how it looked when I took this photograph, which in itself was not easy to do. 

I now have appointments booked for the follow up MRI scan, a pre-op and the operation itself. Should be all done and dusted by the end of April.

  

Ouchy

Radiotherapy Finished

It was the last day of RT on Wednesday. A mixture of emotions. 

I was relieved to get the treatment finished because I didn't think I could take any more of the pain at the back of my knee. I have now been reduced to hobbling around and taking one stair at a time, every slight bend brings with it a lot of pain. The area around the knee and thigh is also very tender, but nothing compared to the knee pain. I think I have cracked the issue of holding the PolyMem bandage on the area and so far so good. Every now and again I need a little trip to the toilet cubicle to adjust it but other than that it is holding up well. 

The memories of final treatment day will stay with me forever. Emma and Alfie came along, as so did Bill and Joan (Emma's nan and gramps). It was really special to have some support with me. Initially I just though of it as another day at Clatterbridge, but having loved ones there with me made a real difference. It sunk in that the occasion wasn't just for me, but everyone else too. It reinforced the idea that everyone is feeling it as much as me, and that the "ringing of the bell" was also a milestone for them too.

Speaking of the "ringing of the bell", the thought of drawing attention to myself, right upto the moment of doing it, was not one I relished. That all changed on my little hobble over to the bell with our son Alfie. I was an honour to hold that little rope with his little hands and finally do it. I think he was taken aback by the reaction from others sat in the waiting room, like everyone was cheering him on for his excellent bell ringing skills. He was a hero for a minute or two, the best bell ringer in the world in his eyes. When offered a second go though, he shied away from it and hid behind me. Like I said, I was so proud to do it with Alfie, and that will be with me forever. I know he doesn't quite understand at the moment, but he will look back on the photos and realise what a special thing he did.

Emma, Bill and Joan also kept little Alfie entertained whilst I was in on the table getting zapped. Fishies and balloons, how to keep a two year old entertained.

I also mustered up the courage to ask the medical team to take a photo of me on the radiotherapy machine, something I have been meaning to do for a while.

After treatment I met Dr Alam again to look at how the leg has been reacting. She told me that I will be going for an MRI scan in a week or two to see how the tumour has reacted. Dr Alam also asked me a favour. They want me to spend half a day at Clatterbridge on a Saturday this month, to help with some kind of Junior Doctor training. Its not very often they get a Myoid Liposarcoma coming in and she feels I can be some kind of use. Of course I was happy to accept with all they have done for me, so that should be quite exciting.

Thanks again to Joan and Bill for coming along, and of course Emma and Alfie. We had a lovely meal afterwards to celebrate our little victory.

Blog Adverts

By the way......you may have noticed a few adverts on the page. Please do not let this put you off visiting. There is a little bit of money to be raised by having a few adverts on a blog page, and all money made from my views, although its not much, I will be donating to Clatterbridge Cancer Centre.

Thanks



Nearing the end of RT

I am now nearing the end of my radiotherapy treatment, only 3 more sessions to go of the 25. It seems to have flown by to be honest. Its at the point where it is going to feel strange not going to the hospital daily.

I can tell the tumour has shrunk in size. I'd imagine it wouldn't be too noticeable to everyone else, but when I am are stuck with it 24/7, having the odd feel as I'm driving, the change to me feels quite significant.

I was warned of the side effects of the radiotherapy prior to the treatment, and over the last week, the final week of treatment, one of the side effects has really started to rear its ugly head. The whole area which is being treated has become tender and quite uncomfortable to touch. This I can live with, its just like they said it would be, like sunburn. The one area which is causing a lot of discomfort though is the back of my knee. The pain when I try to bend my knee is quite excruciating. The skin has started to crack and the area has turned a dark, almost black colour. Because of this I have developed a bit of a limp in my walk, to try and keep my leg as straight as possible to avoid the pain which comes with every slight bend. Stairs are the biggest struggle, I have to tip-toe on my right leg to try and lift my left leg straight onto the next step.

The nurses at Clatterbridge Cancer Centre have given me a supply of PolyMem foam dressing to apply to the area. Its clever stuff which cleanses the skin, absorbs any leakages from the skin and does reduce the pain quite a bit. Unfortunately it would seem there is no clever way of keeping it in place on the back of a joint which moves a lot. The surrounding area is also undergoing treatment so there is no easy way to stick the foam in place. This I learnt the hard way when trying to remove a plaster which was holding it on the back of my knee. I won't be trying that again. The fish net stocking which is supposed to help hold it in place also rides up and down my leg so that doesn't to seem to help much either. I guess this stuff is designed to help people who are confined to a bed or sofa, and only get up now and again to make a cup of tea, it doesn't seem to help much when your job involves quite a bit of walking and moving around.

Still, no pain, no gain. It obviously means the RT is doing its job.

I have engineered a solution for today at least, the old faithful foldback clip.

Emma and I are like an old couple. Me limping around and Emma in the late stages of pregnancy. The wonderful things which come out of each of our situations though, are worth every second for us. I just do enough moaning for the two of us.

One Day at a Time

Treatment number 18 of 25 tonight and its not going too bad. The affects of the radiotherapy have started to show more so over the last few days. The "sunburn" effect which I was expecting is here and it is becoming quite difficult to bend my knee without a bit of pain, the typical kind of pain which comes with the tightening of the skin with severe sunburn. The hospital keeps me well supplied with cream to lessen the effects, but I suppose that only works well if you remember to put it on twice a day, so yeah, you could say some of the pain is my own doing.

I feel like a broken record going on about my radiotherapy, but that is what my life is at the moment. Work, radiotherapy, sleep, repeat. Thank god I have Emma and Alfie at home to keep me sane. Well only 8 more to go, and then a scan to see what miracles it has worked. Hopefully shrunk it quite a bit to make my surgeons life a bit easier.

Wednesday 9th March cannot come quick enough now.

Fight Against Psoriasis

Since beginning radiotherapy, I have become overtaken by Psoriasis. The GP and the Radiographers tell me that this is nothing to do with treatment, and is likely to be brought about by stress. One thing I do not feel a the moment is stressed, but as they explained, you do not have to feel stressed for the body to be under immense stress. They believe that because there is so much going on in our lives, the brain could possibly have "switched off" so that its not running parallel with how my body is reacting. All sounds a bit strange to me.

If you are not familiar with Psoriasis, I'll try to explain. Basically it is where the body (the skin) is producing the next layer of skin too fast. For everyone, skin is always dying and re-growing, but Psoriasis, the new skin tends to be there before the old skin has gone. This brings about rash like symptoms which unfortunately you have to live with. It can disappear completely for years, and then come back again. Some times are better than others, but for me, this is the worst it has ever been. Hopefully my cream will reduce the symptoms.

I'd down to single figures now for radiotherapy treatments left, 9 to go. I'd love to say I'm looking forward to it ending, but what it does mean is that the operation is getting closer day by day. The last couple of days, the thought of the operation has started to scare me. It had never bothered me too much because it seemed so far away, but recently it has been running through my mind quite a lot, and the thought of the unknown results is making me nervous. Of course, they will remove the tumour, of which I have no doubt. My worry is what comes out with it.

One thing at a time though eh, get the radiotherapy out of the way then worry about that, time for a nice relaxing weekend with the family.





 

Treatment 14 Tonight

 

I have just watched a short video about one mans journey with Myxoid Liposarcoma and I can relate to a lot of things he felt. Please take the time to watch the video if you get a chance.

 

 

 

Treatment number 14 of 25 tonight, I am beginning to see light at the end of the tunnel. Once this is all over I really want to get involved with doing what I can to support the Clatterbridge Cancer Centre.
Honestly, before all this, fundraising for any kind of cause had never crossed my mind. I always admired those who did, but I guess I was kind of selfish and only thought of those around me.

Half Way There (Nearly)

Tonight will be my 12th radiotherapy session of 25. I know its not technically halfway through, but is close enough for me to celebrate with a few beers tonight. It has become part of my daily routine now, and each session seems to get quicker. I now know how to position myself best for the nurses to line me in faster, because the first few sessions the lining in took longer than the actual treatment. There are always two nurses who issue the daily treatment, and the lining in of my body is usually accompanied by a series of measurements and angles read aloud so they can confirm all is good with each other. I am now very familiar with these numbers, its got to the point whereas they could read them to me and I could tell them if they are ready to go.

I really want a photograph of myself on the treatment table, but always feel too embarrassed to ask one of them to take a picture. Maybe I will get round to that sometime next week because it is something I would like to look back on in years to come.

Emma's bump is getting really big now, we can't wait to welcome little Arlo Thomas Lynch into the world in April. She is a strong woman, and although she doesn't let on, I cant imagine how hard things must be for her at the moment. Her body must be aching so much and general daily tasks must be 100 times harder than normal. I know Emma though, and she wouldn't change it for the world.

Alfie just continues to be happy. Although I have already left for work by the time he gets up, I know he gets excited by starting a brand new day. Everything is an adventure and his curiosity is simply amazing. That little man just loves life.

Raising Sarcoma Awareness

Every so often, I find myself trawling through the internet for Sarcoma stories. I have just come across a story about a young man, Paul, who unfortunately passed away back in 2011 after losing his battle against the "forgotten cancer". 28 years old......that's no age and has brought me to the verge of tears.

His father, Francie, is doing a great job in raising awareness of Sarcoma with "Paul's Campaign" and is highlighting how important early diagnosis is for a successful outcome.

This article really indicates how rare a cancer this is. "A GP might only meet someone with a sarcoma once in their working lifetime." ........wow!

Sarcoma: Paul’s Campaign is aiming to raise awareness of the ‘forgotten cancer’

In another article, three bands in Glasgow are teaming up to form a supergroup to headline a 12 hour danceathon in aid of Sarcoma UK. They have lost two friends to the illness over the last couple of years and are raising awareness in a unique way. I just wish it was close enough to go long and show my support but Glasgow is a bit too far.

All Star Band headline 12-hour danceathon in aid of Sarcoma UK


I have always suffered with Psoriasis, mainly on my joints, and it tends to come and go throughout the year and has never really been a problem for me. The last couple of days though I seem to have had an outbreak almost all over my body. I can't seem to work out if it is because of the radiotherapy treatment, because of the oceans of water I am drinking or for some other reason. Tomorrow I meet the Oncologist for the first time so hopefully she can provide some answers.

Treatment number 9 of 25 tonight......that has gone quick! They know me by name now at the CCC reception so I just toddle on it with a little wave.

 

Say Hello To Arlo

Another day, another scan.......except this one wasn't for me, it was Emma's turn this week. Say hello to little Arlo Thomas Lynch who is enjoying his last couple of months of being tucked up in Emma's belly.

Its such an exciting time and we can't wait to welcome the little man into the family, and I'm sure Alfie will soon take to the idea of being a big brother. Now we just need a bigger house to have more room for the boys to play and be happy.

I was also in the United Utilities magazine this week with the team from Heronbridge Pumping Station for another job completed.

 

Radiotherapy treatment is continuing as normal. 7 sessions of the 25 done, and the leg is really starting to feel "sunburnt". The cream is helping though (that's as long as I remember to put it on), and the water intake is taking care of the fatigue as best as it can. I do find myself napping more often now, but I don't know if that is to do with the treatment, or just feeling a bit run down in general.

 

I have had my appointments moved to later in the day which will really help with my work schedule, although unfortunately less time at home in the evenings to see the family. Its only for a few weeks though and I'll have plenty of time at home soon enough after the operation.

 

An exciting but nervous few weeks ahead for all of us with everything that is going on.

 

 

 

 

H20

It's been a pretty tough week this week. Emma, Alfie and I have all been feeling a bit under the weather with some kind of cold and brave little Alfie has also had to fight off the chickenpox. It's good though that he has seen it off at a young age and probably won't remember having it.

Emma is being really strong too, it must be so hard to deal with things so late in the pregnancy. She doesn't show it though and carries on with life as normal, such a wonderful mother to Alfie and soon to be Arlo.

On Wednesday the fatigue really got a grip of me. Just after lunch at work, I turned into a zombie. I couldn't move and just wanted to sleep. I could even summon the energy to get my laptop charger out of my bag and sat staring at a blank screen for what felt like hours. I finished work early to drive to the hospital for my treatment because I felt if I left it any longer I would be in no fit state to drive anywhere. I was also so dehydrated. I tend not to drink too much water, instead I rely on coffee to get me through most of the working day, so it was unlike me to stop at a petrol station for a couple of bottles of water. By the time I pulled up at the hospital I felt so much better, so being an hour and a half early I just sat in the car enjoying my water and slowly coming around.

After I finished my treatment for the day I told the nurse I was feeling so lethargic during the day, and she said "have you been drinking plenty of water?". So lesson learnt. Stay off the caffeine and plenty of H20. I'm actually enjoying the water now and feel more awake that I have knocked the caffeine on the head. I'm going to miss my coffee, but it's for the best.

Treatment number 7 tonight they are coming thick and fast.

Treatment Underway

I have now had 2 of my 25 radiotherapy sessions at Clatterbridge so still an long way to go. Organising my work around the appointment times has been relatively straightforward so far so long may that continue. As I have mentioned in previous posts, my employer has been very accommodating and understanding which is very helpful.

I was sat in the waiting room on Friday for my 4pm appointment, when I was awoken from my daydreaming by the loud ringing of a bell. This was followed by everyone in the waiting room clapping and cheering, some even getting to their feet. I joined in of course, not realising straight away what all the commotion was about, but when I turned to look at where the ringing came from, all became apparent.

Sat in his wheelchair, a man of no less than 80 years old, had just rang the bell to let everyone know that he had just finished his final treatment. The look of joy on his face was obviously from the overwhelming appreciation shown by other patients and their loved ones, as well as celebrating the end of his radiotherapy treatment of course, I can imagine its a long old slog.

When it sank in, it was quite moving and really made my day. I can't imagine myself ringing that bell at the moment, not only because it seems so far away, but because I hate drawing attention to myself in a room full of people. I have no doubts that 4 weeks into my treatment I will be itching to ring that bell though, in fact, I would love little Alfie there to help me do it, he would loving ringing that bell, but it might be hard work getting him away from it.


I was quite shocked to find out I was in Friday's Liverpool Echo. I was contacted by a reporter from the Echo as I was waiting for my first treatment on Thursday evening. He asked me to send me a picture of myself, which I thought was to go with a little article on the website as part of the World Cancer Day campaign. It was not until Friday evening that I got a picture message off Emma showing me the section in the paper. I honestly had no idea. If I can help spread awareness in anyway though, that is a bonus, and I would like to thank Jamie McLoughlin from the Echo for taking the time to share my story.

First Radiotherapy Session

Yesterday evening was my first radiotherapy treatment session at Clatterbridge Hospital. Quite uneventful to be honest. I arrived at the hospital about 4.10pm for a 4.30pm appointment, and sat in the waiting room in the radiotherapy department. I was weighed and Craig at the hospital explained the procedure to me, but  I didn't actually get in for treatment until about 5.20pm. I know the delays can't be helped and the staff at the hospital are working as efficiently as they can, I just hope its not going to be 5 weeks of waiting around every night. On the other hand, what is a few hours here and there to save my life and get this thing out. I can't complain.

Clatterbridge Hospital is like no other hospital I have seen. Its not the standard waiting room which you tend to see in a typical hospital, which can be quite depressing and intimidating sometimes. It is like waiting in a coffee shop, nice comfy sofas and individual tables with magazines of all kinds sprawled out. I guess they try to make you feel comfortable, I find it puts me at ease easily and I can happily sit and play Clash of Clans or Candy Crush.

I was then reunited with mould. Mould was comfy as usual and I fit in very snuggly. I was lined in with my tattoos to mm precision and the machine started to do its job whizzing around me and making lots of strange noises. There are plenty of screens around which detail all types of dose rates and such, and I couldn't help but move my head slightly to take a quick peek....I learnt my lesson and will not be doing that again after my telling off from the nurse. I will have to keep my curiosity under wraps from now on. 

I didn't feel a thing, I was actually surprised when she told me we were nearly done, I didn't know it had even started. It will be a couple of weeks or so before the soreness might creep into my leg somehow, a bit like sunburn, but they have given me some cream to apply twice a day which should keep the tenderness down.

So......5 more weeks of this, It will become part of my routine as much as waking up each morning.

Also, I posted a link to my blog on Facebook yesterday and I was quite taken aback by the reaction. I was somewhat nervous about sharing my story with people I haven't seen for a long time, but seeing as it was World Cancer Day 2016 I felt the time was right.
Thank you all for your messages of support and I am truly astonished by the kindness of all the people I have had the pleasure to work with or got to know over the years. Also a big thank you to those who shared my post, it means a lot to me.

World Cancer Day 2016

 

This Thursday 4th February 2016 is World Cancer Day 2016. Play your part by wearing a Unity Band (I got mine from the local Cancer Research Shop) or by donating whatever you can. Help beat cancer sooner.

I couldn't decide which blue I preferred So I went for both. Also available in pink.

 

 

In other news: Still in no mans land between the pre-radiotherapy appointment and having a firm date set for the treatment to start. I am expecting it to start possibly on Monday next week, just waiting for confirmation from Clatterbridge Hospital, and they did say it could be a last minute phone call.

 

The nerves tend to set in a bit when I haven't heard from a doctor or nurse for a while. Being left alone with my thoughts tends to sway them to the negative side. Without that constant reminder from the specialists that everything is going to be ok, its hard to keep positive thoughts 100%. That's just me though, nothing has changed so there should be no need to change my thinking, although I will be glad to get things started again.

 

Planning for little Arlo's arrival (name decided last week) should avert my focus nicely to happy thoughts.

 

 

 

Update: I got a call from Clatterbridge Hospital not long after completing this post, first radiotherapy treatment thisThursday.......so that's me for the next 5 weeks :)



USA - Clinical Trials of TRC105 Drug

It amazes me how much hard work and dedication goes into the search for new cancer drugs, and many of these drug researchers rely so much on charitable donations.

I have found an article released two days ago about the research into a drug called TRC105 which is in development by a company called TRACON (San Diego, California) in collaboration with the National Cancer Institute in the USA.

"TRACON Pharmaceuticals (NASDAQ:TCON), a clinical stage biopharmaceutical company focused on the development and commercialization of novel targeted therapeutics for cancer, wet age-related macular degeneration and fibrotic diseases, announced today that the U.S Food and Drug Administration (FDA) has granted TRC105 orphan drug designation for the treatment of patients with soft tissue sarcoma."

I don't claim to be a science guru who entirely understands everything mentioned on the web page, but surely this is good news for future soft tissue Sarcoma patients? It seems to be in trial stages stages at the moment, but to me it seems that the company is quite optimistic. 

“Orphan drug designation for TRC105 underscores the high level of unmet medical need in patients with soft tissue sarcomas and validates our commitment to developing TRC105 in a variety of orphan drug indications,” said Charles Theuer, M.D., Ph.D., President and CEO of TRACON. “We are highly encouraged by the clinical data reported to date from the Phase 1b/2 trial of TRC105 in sarcoma patients, especially in patients with angiosarcoma. We look forward to the availability of complete results from the Phase 2 portion of the sarcoma trial and initiating a pivotal Phase 3 trial in patients with angiosarcoma in 2016.”

The evolution of the human brain is quite mind boggling. The advances we make as a human race are absolutely astonishing. The many people who put a lot of time and effort into working on cures, cures for any types of disease are nothing short of miracle workers.

I truly appreciate how lucky I am to have these people taking care of me.

LINK: pharmiweb.com TRC105 Soft Tissue Sarcoma

Here Is My Leg

I have always put off posting a picture of my leg. Maybe I've always been too embarrassed to show anyone, plus looking at it from this angle rather than looking down makes it look worse. I try not to look at this picture too much, but if it can in anyway help someone realise that these things need to be checked, then I feel like I should be sharing this. As you can see, there is a bulge on the inner of my left thigh which also goes partly behind my knee.

The angle at which I have positioned my legs for this photograph really emphasises the swelling (this is not my usual stance I don't walk round like John Wayne). I say swelling as its not so much a lump, just a bigger leg.

In hindsight I would have had it looked at sooner, but it went from barely noticeable to this fairly quickly. Now you can understand why the jeans get a little uncomfy. 

I have a thigh like Roberto Carols, shame it doesn't give me the power to take free kicks like he does with his left leg :)

Pre Radiotherapy Mould

This morning I had an appointment at the Mould Clinic at Clatterbridge Hospital. As the name suggests, this is where they made a mould of the lower half of my body, a mould which I will become very familiar with over the 5 weeks of radiotherapy treatment. It was very comfy, I wonder if they will let me take it home when they have finished. The idea of the mould is to keep me in the same place each and every time that I have my daily treatment, so the tumour can be hit in the same spot each day.

There were not any obvious signs directing you to the Mould Clinic in the Cancer Centre, so a little old lady on reception took me on a bit of a tour around the centre. She said it was her excuse to have her weekly exercise so who was I to object? She took me to the Simulation unit where I met a member of the hospitals staff called Chris. Chris was somewhat scared to touch me or my clothes as I had a t-shirt on with a Manchester City emblem, and after talking about how crap Everton were at the weekend, he went on to tell me about the plans for the morning. 

He explained that I would be lay on a big bean bag which will be filled with air to form the mould around my legs. I also now have 3 pin prick tattoos on my lower half which will remain with me for the rest of my life, these are used to make sure I am correctly aligned on the machine for each radiotherapy session.

Mould and I were then sent backwards and forwards through the CT scanner several times. I wish they wouldn't make you so comfy on those things, its hard to keep my eyes open with the gentle rocking and the background whirring of the machine. Still, not as comfy as the MRI scan where they put relaxing music through your headphones for a much longer period. That one did send me to sleep briefly.

I couldn't help but notice that everyone who had an appointment was much older than I was. I'd safely say I was the only one in a room of 20-30 people under the age of 60. I'm not implying that many people my age don't get cancer, more the fact that I felt a bit like the odd one out, like people were looking at me and wondering why I was there.

So now, 10 days for them to ensure that everything is in place to administer the correct dosage of rays to the correct area, and 14 days until the visit to Clatterbridge becomes part of my daily routine. 

Here are some friends I met in the waiting room, they weren't too chatty though.

Blog Along

This morning I have got together a few blogs I have found really encouraging and useful over the last couple of months and I would like to share them with you. Firstly to raise a bit more awareness of Sarcoma and how it affects people in different ways, and secondly for people to take some encouragement from other people who are affected by this rare cancer. I have not got permission form these bloggers personally to share their blogs so I really hope they don't mind.

Darren Evans' Blog "Sarcoma and Me"

"Tumour Has It" by Beth

Andy's journey with Chondrosarcoma

My Journey with Lieomyosarcoma by Graham

Emma's Blog about her fight with Sarcoma

Darren's Cancer Journey

All very inspiring reads and excellent narratives detailing the ups and downs which we all experience on our own paths in life, and if you or a loved one has been affected by Sarcoma, they are well worth a read.

I now have an appointment at the Mould Centre, Clatterbridge Hospital for Monday morning to get my leg all moulded up. This will be the first step towards my 25 sessions of Radiotherapy. Its a relief to get moving again, and looking at the timeline set out, I would imagine I will be in for my operation to remove the cancer somewhere between the start and the middle of April. Coincidently, this is the time baby boy number 2 (still no name decided upon) is due for arrival, but Sarah Massey has said that things could be jiggled about to accommodate our situation which is great news. Maternity leave on crutches, should be interesting.

Event timings are weirdly panning out well, as if it had been decided beforehand. Still, things change very quickly and plans can change on a day-to-day basis. Take each day as it comes with a smile.

Waiting (again)

So here we are waiting around again. I was expecting a call from Clatterbridge Hospital yesterday to confirm an appointment for the pre-Radiotherapy treatment but still no contact. Sarah the Sarcoma Nurse has been chasing them up so I hope to hear from them today (I know I wouldn't want the mad Irish lady on my back haha). It's easier waiting for these things when I know I have an appointment booked, but to not know when I will be seen next, is quite frustrating. I have no concerns in relation to the actual cancer, I just want it out.

Everyday brings with it thoughts of the future, how long will I be unable to move properly after the operation? Will I ever be able to move my leg properly? Will it have an impact on my work? There are so many questions that can only be answered on a day by day basis.

2016 is going to be a year packed with emotions and big life changing events. I really don't know how Emma puts up with me, there is so much to think about, the size of the house for one. We are expecting little boy number 2 in April which is such a blessing, I just really hope I am going to be able enough to help out as much as I can. I wish I could explain to little Alfie why Daddy can only sit on the floor for 5 minutes at a time before leg problems kick in, he loves his train sets and cars so much. The little monster also knows the right places to dig his elbows into to make Daddy squirm.

There are so many informative sarcoma blogs out there, every case a different type, a different location on the body, and I am going to post a list of them on my next post. So many brave people sharing their experiences of such a rare cancer. 

Update: Appointment now booked for Monday morning at the Mold Room, Clatterbridge Hospital. 

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Thank you so much for reading my blog journey, I sincerely hope you can take heart from what I write and for those who are, or know someone who is affected by Sarcoma, I truly wish you the all the best.