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!
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....
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!
Enjoyed reading your blog, it was very nicely set down, Well Done 🏆 We wish everything goes smoothly from now on for Tom, you and the boys.
ReplyDeleteThanks nan, we couldn't have got through it all without you and gramps. You have both been amazing xxx
DeleteHi Emma,
ReplyDeleteFirst off I want to say I feel like a stalker! lol I've been checking back on here a few times to see how Tom got on with his operation (does that sound too weird....sorry...):/
Sounds like everything went well and I am jealous of his neat scar (mine does look like a sharks lunch...and dinner!). The pain will lessen as the weeks go on (keep everything moving, that'll help with the oedema....I'm sure your support will advise you better than I ever could as each case is different).
Your boys are lovely and I'm sure Tom will be playing football with them again very soon.
Hugs to you all, please take good care and happy moving day when it comes!
Kind regards
Carol
Thanks for your lovely comments Carol and NO we definitely don't think of you as a stalker! Tom has spoke of you many times and you have certainly helped him at times when he has needed to hear things from someone who has been where he is now.
DeleteHis blog was initially to document things and help others, he was made up when you got in touch as you've helped him so much :)
Tom would have liked to have blogged sooner but he's been feeling a bit down - I'm sure when he's more himself he'll blog more - he's getting there xxx
Hi Emma,
ReplyDeleteI understand that Tom will be feeling down at the moment as constant nagging pain can be very demoralising. Although he may feel that taking pain meds is not 'macho' after all he's not given birth has he? *cheeky wink....lol.... seriously take them for as long as he needs them and as time goes on he will need them less and less. Its a strange pain and like him I though as soon as this 'thing' is out of me it will be much better but even now I still have days when I am floored with aches and pains and so tired I just want to lie down. He will be up and back to his old self if he gives himself time (listen to me with all my sensible advice....shame I don't take it myself sometimes...*cheeky grin this time!).
Having you and the boys there for support is the best medicine!
Take care
Carol xxxx