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.

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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.