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 :)