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Solstice Greetings. May this be the first of many.
Mark and Meg I hope you have a Great Xmas and 2010 is awesome for both.
Best Wishes
Hope you both have a great Christmas!
missingfrontlobe - YGM
Sorry about the lack of posts recently - I'll fully update tomorrow.
Thanks for all the Christmas messages, and season's goodwill to all of you!
M and M x
Mark, replied mate.
Hope you are keeping well Mark and Meg! Have a great Christmas
DC
Have a great Christmas Mark and Meg. xx
Thinking of you from Belfast
Have a great Christmas and 2010 is going to be a brilliant year for you newly weds x x x
Mark & Meg - if Pigface says 2010 is going to be brilliant for you, then I can only add that 2020 will be abso-****ing-luteley awesome. Enjoy your first of many married Christmasses.
Mark and Meg - Merry Christmas from all at Green Towers. Have a good one. 🙂
Seasons greetings to you Mark, and Meg.
Hope you are able to enjoy Yuletide this year.
Take care
STM
Happy christmas! Let's hope next year is on the up for you.X
Enjoy your first married Christmas!
Best wishes to you both this Christmas time, have a good one
Jon
all the very best seasons greetings from me to cheers.
Mark & Meg, I haven't posted on here for ages and just seen your very humbling thread. You are both without doubt simply inspirational. I have a tear in my eye at the mo' and all i can do is do what countless others have done before me & wish you both all the very best for the future. Your unbelievably brave attitude is simply first class and that's priceless.
Have a good Christmas and I will be thinking about you. As you said at the beginning Mark - you NAIL THAT ****ER TO THE FLOOR!!!
All my best wishes & thoughts, Nige
Merry Christmas!
I know its a little late, and that I promised to update a few days ago but things got hectic. I hope you all had a great Christmas; from reading the various posts on here, it would appear that the UK economy is well on its way to recovery!
I feel bad for not having posted recently. The support from STW has been immense, through both the post and PMs, and at one stage I felt that I couldn't continue to do it justice. Meg has been bending my ear for the last few weeks about it, and rightly so. My hope is that I can recall enough information about the last month to give a full and frank account of what has been happening.
I mentioned previously about the allergic reaction to Taxol, which placed a fair amount of stress and worry on both of us. The team at the Marsden emailed a fair amount of information about the Caelyx to me, and expressed their collective opinion that it was the best option of all. My worry was more about having an allergic reaction to the new drug.
There were also continued concerns about the registrar that I'd been dealing with at the RM. I didn't like his 'bedside manner', and had expressed my concerns to the Sarcoma Nurse, who stated that a meeting between the head of the department (Leading Authority on Sarcoma in Europe) and myself (Agressive Bolshy PE Teacher with issues about Authority Figures, regardless of how Leading they are) would be a good start. My sister and I went up to the RM a few weeks ago, and the meeting was positive, with all of the answers to my questions being attempted, if not answered. An altogether more interesting moment was when the Professor described how 'agression breeds aggression', referring to my meetings with his useless registrar. My sister (PE Teacher) and I (again, PE Teacher) listened thoughtfully to his perspective until he'd finished, at which point I expressed my concern at this explanation would hold little water at my place of work if confronted by an angry child... I also had an X-ray of my lungs taken - prior to the wedding, the spell I had in hospital had concerned the team at the RM, who'd detected an effusion in the pulmonary chamber. They'd fully expected me to be readmitted for draining, or at the very least have some residual liquid in the right chanber. The professor was pretty puzzled at the total absence of any fluid, and stated that it was 'extremely positive'. About bloody time....
So the initial Caelyx treatment went well and with no hitches, although the cost of cancer is starting to add up both financially and in time spent getting to the RM. £35 to park my car, and because my treatment is fairly specialist the Caelyx is often available only after 4pm, which means that my day lasts from 6am to 10pm. This can be a major obstacle for me, although the amount of steriods they load me up with prior to treatment could keep a bull elephant wired for a few days.These are all minor points though...
Early one morning three weeks ago I was browsing for more sarcoma-related information, and to my complete shock stumbled upon a fella from the USA's blog about his sarcoma. Initial reading proved to be a real shock, as his diagnosis was identical to mine. To put this in some sort of perspective, my angiosarcoma is as rare as it gets; to have a primary tumour in the heart, and secondaries in the skeletal system but not anywhere else is pretty much unheard of. I read through parts of his blog, recognising similarities between diagnosis, emotions etc, but his treatment was different. My angiosarcoma was discovered post-op through biopsy, whereas he has been treated with a variety of different chemo/radiotherapies in order to shrink the tumour in his heart as much as possible. His medical team have been very much against surgery, telling him that the risk is too great, but to his credit he fought for the treatment for 18 months and was finally given the all-clear to have it on the 22nd December.
I emailed him, detailing my story and similarities, and after a short while received an email back from him. It felt good to establish contact someone going through the same experience; at times the lonliness of cancer can be quite unbelievable, and isolation can lead inevitably to depression. He reckons that, bar one other person in the US, I'm the only other person with this. Now there's dumb luck!!!
In order to establish a baseline for comparison, the Heart MRI I had argued for was dated for Tuesday 15th December at the Brompton, next door to the RM. I took my bike on the train, and hammered through London to my appointment. The MRI was to establish (a) how much of the tumour was left, (b) its location in the heart and (c) a baseline to measure growth. I was bollocked for cycling to the appointment ("..really Mr Fradgley, it doesn't help your current state of health to cycle to an MRI so soon after surgery...") but enjoyed the freedom of hammering around London on the way back. Too many bloody fixie riders though - seriously, my Whyte is SS and I don't do gears, but at least act like you're enjoying your ride...
My most recent chemo was two days before Christmas, and in the early hours of the morning I checked Will's (fella in US) blog to see how the operation had gone. His wife had posted saying that the op had been sucessful in removing all of the tumour, and that he was recovering in the ICU. I'm delighted that it went well for him, but am ashamed to say I felt jealous that they'd managed to remove all of his toumour, and that I still had 10% growing and feeding in my heart. I feel great shame at this; Meg has assured me that it's a normal response, but it doesn't take away from the fact that I wanted it to be me, not him. I am chuffed though; he'd had it tougher than me over the last 18 months, and as mentioned previously in this post, I tend to operate more effectively when things are at their toughest, so maybe it's meant to be this way...
My sister and my dad came with me to my chemo. Despite my 'angry man' status, the fact that the trains were shafted didn't annoy me, and after getting to the appointment late and having my bloods taken my sister and I went in for a debrief about the previous weeks Heart MRI with my 'favourite' registrar. He started to read the report out, expressing the observation made by the Brompton team and their conclusions, and I waited on the news that it had started to grow again, probably in an inoperable direction.
Therefore it came as a bit of a shock to hear that, apart from the scar tissue from the op, there is no evidence of the 10% left in the heart. It seems to have gone. Either through the limited chemo I've had, or just the power of positive thought, but it's not there. It will be back at some stage, of that I'm sure, but for the time being I can turn my attention to the battle in my skeletal system. My aim is to be the first person to beat this. I will do it.
I could not do this without you all. I mean it. There were times in the dark early stages of this journey when I thought I would throw in the towel. Your posts are the difference between fighting this ourselves, and having a army behind us. There are stories of inspiration on here, from those that have or are suffering from illness, and too many folk on here to thank individually; My family, Chris (Marsdenman), Trudi, The McNic family, I'll be up soon I promise! Si in Brighton for getting me back on the bike, Mike and family in Southampton, thank you all.
I won't let you down.
Mark Fradgley
P.S Attempting a ride tomorrow if anyone wants to laugh at a bald cripple with a cow-heart riding SS; look at bigsi's post for details
P.P.S For when I'm on the floor:
Mark you can never let me or STW down, just an inspiration.
Many thanks for the update.
Another hugely inspriring post. Please don't feel bad about not posting for a while, just get better.
All the best to both of you for the new year.
glad it's going well. i hope the chemo goes ok. are you in a health insurance scheme? if so you an claim back for things like the car parking etc. also try getting referred to macmillan as they have financial support for things like that. i was lucky the weston park is only a bus ride away so that was way more palatable.
i want to do a sponsored swim on new years day down at saundersfoot but my family are saying no. i can understand it as the consultant said there's a connection with physical shock and lymphoma, i did it last year and the times kind of coincide with the start of my lump! going to find a beach and have a paddle though!
have a good new years eve and see what the new year brings.
Well it sounds like you've had some good news over xmas which is fantastic 😛 .
For those that wish to join Mark and a few others on Wednesdays ride (30th December) its here -
[url= http://www.singletrackworld.com/forum/topic/south-downs-crimbo-ride-30th-december-details ]South Downs Crimbo Ride[/url]
Looking forward to meeting you Mark and anyone else who's going to be there.
I can only begin to imagine that dark place but we are here to shed light on you. You can only post when you feel able and that's fine.
Great news so far - hope you have a good ride.Keep fighting!
Great clip BTW 😀 We are Kings and Queens!
Merry Christmas & a happy New Year Mark & Meg.
Thanks for the update & don't feel bad about not updating us on STW for a while. We all know that there are far more important things happening in your life.
Fantastic news that the 10% of the tumour in your heart is gone - one big step forward.
Your posts are inspirational & your attitude & determination to beat this shines through. I can just imagine their shock at the hossy when you turn up for an appointment after riding through London on your bike - priceless 😆
Have a good ride on the 30th Dec & I look forward to seeing the pics later.
Regards
Les & Dawn
Thanks for the update and don't worry just post when you can.
You'll still be in our thoughts even if you can't post for a while.
Cracking news about the 10% of the tumour gone, keep fighting you're winning.
Have a good one on the 30th
All the best for both of you for 2010
Fantastic news!! Keep fighting, stay strong when you are able and rest when you can. Happy New Year both - heres to 2010 [img] http://www.fireflyfans.net/smiley%5Ccheers.gi f" target="_blank">http://www.fireflyfans.net/smiley%5Ccheers.gi f"/> [/img]
Great news Mark, really pleased for you & Meg.
mark, i've not posted in this thread yet but i read the updates regularly.
this latest really is great news, and i don't think there's a single person on STW that's not got a massive smile on their face after reading it!
enjoy the ride on thursday mate, and have a great new year!
"there is no evidence of the 10% left in the heart. It seems to have gone."
Fantastic news! Happy New Year M&M!
Great news keep up the fight mate ,
Therefore it came as a bit of a shock to hear that... ... there is no evidence of the 10% left in the heart. It seems to have gone.
'kin fantastic news 😀
So far you have a 100% survival rate Mark, which is great. Big respect, onwards and upwards
Hi Mark. Was thrilled to read this latest update, finally some good news. And not just good but bloody great. 🙂 I know you said you were going to nail this thing to the floor but you're doing a good job of it. Have a great ride on Wednesday and catch you soon.
Keep up the good work, both of you.
Some great news to finish the year on. Long may the remission continue.
Mark really great news I hope that you continuing progessing well. Just on the financial side of things when my daughter was ill we were able to claim an element of disability living allowance too which basically helped to cover all the travel costs. As a teacher you have been paying in so as someone else has said contact the MacMillan nurses and the DWP and see what you can claim-never be too embarrassed-you have paid in-its time for you to take out!
Good effort there Mark. Keep punching it in the balls. Does Will know about this thread?
fantastic news on the scans, Mark !
(trying for a long-shot day off for Weds)
Now that has put a smile on my face, excellent news fella 🙂
Thanks for the update.
It's such good news for you and Meg.
I've said this before but I really do think you need to write everything down and maybe in the future have it all published. Your writing is from the heart, honest, funny, interesting and so inspirational to us all.
All the best for 2010.
xx
I'm up to my armpits in rock hard snow up here, but that pesky dust just keeps wafting through!
Delighted with your positive news - suggest you keep on pissing the Leading Twit off by doing the biologically 'impossible'. Contrary is clearly the way to go.
May 2010 continue in the same vein!
Best McWishes to you both.
Well done Mark, everything appears to be going to plan 🙂 Please do remember that there's no pressure on you to post stuff up on here: it's supposed to be for you to let off steam and get whatever you need from in order to get better. And I've said it before, but I absolutely promise you that whatever you're getting from this, the community on STW is receiving back in equal and greater measure. Your attitude is an inspiration for all of us.
Happy New Year 🙂
What a positive start to 2010! Fantastic news.
I read your posts and never know what to say - how crap is that?!
Keep questioning, keep pushing, keep pissing people off and defo keep writing!!
Merry Christmas, and all of our best wishes and positive thoughts for 2010, and beyond ;-D
top news. seriously, I'm absolutely chuffed to bits for you.
Currently trying to see if I can get tomorrow off forthis south downs jaunt...
great to hear this news, enjoy the ride and please post some pics, all the very best for 2010.
gazman