First post, but my wife and I have been following your story from the start, don't really know what to say except our thoughts go out to you both and "keep battling!!!"
Struggling to put this into words really. You are both showing such amazing strength throughout all this; any of us can only hope that if this horrific disease enters our lives that we could face it and fight it like you have. Not sure what medical help I could give (as my medical discipline is veterinary) but seeing as you have some bovine heart tissue 😉 you might respond to some of our treatments!
Is it actually the nerve impulses that are affected by the chemo or is it peripheral circulation that has been affected? If it is circulation then something like ginseng or gingko bilbao (god knows if thats a correct spelling?!) should help. Either that or some kind of vasodilator to ensure blood flow to the extremities is manintained
Suspect you don't need me to tell you this but my advice would be ask the chemotherapy nurses what might help with the potential finger problem and more importantly what to avoid. I have no idea what the potential for cross reactions between your chemo agents and ginseng or gingko whatever are and I am sure that it has the potential for a fascinating experiment, but if its not been done already then much better that someone else does it not you.
****n dust again, all in my eyes 😀
Your updates once again make me realise that my life problems are inconsequential. Kia Kaha.
Mark - you've made a start and this is good - the fight is on.
Keeping positive with you and for you x
Having trouble seeing the keyboard at the moment (major dust storm here)
Don't really know what to say but keep fighting and you WILL overcome this.
Hi petesgaff,
My girlfriend and myself have been following this and just want to add our best wishes to you and your family. Your srength is awe-inspiring!
Antony & Amy
Mark, your 'harvesting' account is fabulous! Do you reckon these places have wifi? 😉
Your positive outlook, dignity and genneral lack of wailing/gnashing of teeth through all of this is (in my short experience of that 'end' of healthcare) really rather outstanding. How you make it humorous at these little points is even better. Good skillz!
Got tears here but I am Welsh and not afraid to show my emotion 😉 not sure what the Welsh bit has to do with it.
Just keep on scrapping, bite, gouge pull hair any dirty trick you have to beat this bastard.
Do you think we could get a collection going of better jazz mags to make the cranking easier.
Glass raised,,,,
Fantastic!!!!
like i've said before the drugs and treatment affects everyone differently and even though i've had chemo it's highly unlikely that it'll be the same mix of drugs that you've got coursing through you. but, having said that one of the side effects was that sensation could/would be lost in the ends of my toes or my fingers but could/should return. i was lucky in that although i had some tingling in my toes the fingers have stayed good so far. kind of important for a d+t teacher.
as for getting through chemo i stayed relaxed and looked at it along the lines that i have to listen to my body. if i felt good i did stuff if i was tired then i slept. but i made sure that i never slept after 4 in the afternoon as it messed my night up completely and i think if you loose the routine of the night then you're b*ggered. plus going to bed with your new wife is massively important as you'll, if you're like me, talk through the day or through things that are sat in your mind that you don't always want to say with the lights on facing each other. the vicar that married us said that we should never go to sleep angry, always resolve it before going to sleep. it's helped me so much through my journey, which is far from over, settling my mind has helped me maintain my sleep patterns.
the whole process is a massive roller coaster over which you have little control. hold tight to meg and get on for the ride. savour the ups and don't dwell on the downs. easy for me to say i can hear people muttering but going through it i think allows me some insight.
like i've said before if you want to get in touch do.
cheers, congratulations on the wedding too.
nick
If it is circulation then something like ginseng or gingko bilbao (god knows if thats a correct spelling?!) should help.
Really check this carefully, my mum was taking this stuff when she had breast cancer, and they had real trouble stopping her bleeding after her op, which, as it turns out, was due to her taking it...
hey up.
this will work for your fingers and you wont need to ingest anything.
buy a chunk of root ginger (about the size of a fist) then grate it up and put it in a muslin square or a sock. bring a pan of water to the boil then chuck your sock in the water. simmer it for ten mins dont rolling boil it though just a simmer.its ready.
take a cloth, tea towel or whatever dip it in the water then wrap your hands in it.(hot as you can tolerate) as you get used to it you might want to put it back on the stove.
you could just put your hands in the pan when its cooled down a bit but i reckon you would find it a bit much on your skin.
let me kow how you get on.
oh ...you might want to give the sock a squeeze with a spoon or something about five mins into the cooking.
makes the house stink mind.
i have used this on folks on chemo before.
Petesgaff,
I've been following this thread for a while like many others.
What you have may have been diagnosed as incurable and the best that you can do is work to control it but you are still here, still fighting it and by the sound of it determined to better the current 12 year marker that has been set. Keep fighting the good fight fella.
I have a fairly grim weekend in prospect, but your post brings it all back to the fact that I have a partner without whom I wouldn't be half as strong as I am. Thank you for reminding me of that.
I agree that you should definitely find the 12yr man as he will truly be able to tell you that he's 'been there, doing that'.
Keep us with you - cos we are[u] with you.
Come on, where are these wedding pictures?? Some of us are getting impatient!
This thread is useless without pics !
(wedding before I get thrown to the snakes that have been crossed with bulls)
I only hope that I would be as strong as you two are........
Hope the treatment is going ok Mark.
Keep the strength up.
Hi folks,
Sorry I haven't been in contact for a while. I'd like to say that things have been hectic, but they haven't. I've had a couple of wobbles since my first chemo session last week on an emotional level, and sometimes doubt creeps in as to whether I'm capable of actually beating the odds occurs. This scares the shit out of me.
There are other more pressing elements at play. I have terrible body dysmorphia at the moment. My scar, whilst impressive for outsiders, makes me feel weak and abnormal. I can't even bring myself to look at it in the mirror without crumbling. My chest still hasn't healed from the surgery and the infection, and this means that I have to sleep on a giant bean bag beside the bed, away from Meg. I really need the physical contact at the moment; I don't care if people view it as being a pussy or the like, but at the moment I need the safety and omfort of the person I love to get through, and not being able to cuddle and hug is a real bodyblow.
The other issue revolves around not being able to sleep past 3am. Getting up this early by yourself allows all the negativity to pervade your thoughts, and no-one to talk to. Pretty tricky really. I find myself turning off TV programmes that are medical by nature, or that might involve death in any way. How shite is that? How bloody cowardly? I have no idea how to pull my head out of my arse at the moment, and it worries the hell out of me.....
On the positive side, I seem to be doing quite well physically 4 1/2 weeks after the heart surgery. I'm managing to walk the dog over some pretty hilly ground at the moment, and using a pedometer I'm clocking up between 7500 and 9000 steps, so I'm aiming for the 10000 per day needed to be beneficial to my heart. I'm also looking to get on the bike soon. If anyone wants to join me for a daytime ride along the seafront from Brighton to Worthing and back at any point please let me know. I know it sounds lame, but I need the first time to be a test as to what I can do....
Cheers for listening. If anyone has a clue as to how I can get photos of the wedding up on here then please let me know!
Hi Mark,I don't sleep much either LOL.Your feelings are not abnormal,but more a sign of you learning to deal with this illness.Your body has been through a lot of extreme changes over the last few months,and it isn't surprising that it is difficult to come to terms with,but you've done very,very well so far.No-one on here will think you are a pussy,we're all still gobsmacked at how well you are doing.You'll have these emotional blips,but stay positive,I think getting back on the bike will help,and we're all rooting for you.
Ian
P.S. There's a guide to posting pictures on the forum help page,we're all looking forward to them.
Hey Mark, You are a true legend of stw, my first time posting in this thread but as everyone else has said, you are handling it amazingly well, of course you will have these feelings and i'm no expert but it must be normal, with time you will heal and get better, i'm impressed your able to do so much walking and already thinking about getting on the bike again, keep at it!
oh yeah! on the pictures front, you can create an account on flickr or similar service, once you have them on the web ask again if you're not sure how to link to them.
Hi Mark, you are a truely amazing guy and I think meg is the luckest girl In the world to have someone as positive and strong as your are. I can't imagine what you have been/are going through at the mo but there are alot of people out here that are wishing you the best. I live a long way from Brighton but I'd quite happily drive down and have a quick spin on the seafront with you. All the best, Ian
Well i dont think many would say you were a 'pussy'...
Cant help with pics, but im sure there will be tons of help from others when they get to work in the uk..
Dont feel abnormal, you've just had major surgery. Its clear youre going to have a scar, but it doesnt matter. What matters is that you concentrate on getting better.
Use this time wisely (the 3am till Meg gets up), organise yourself and dont watch tv for the moment - maybe you're just not ready for that.
All the best.
Hey Mark.
First things first, if you don't have a flickr account you could mail some pics to me and I will put them on mine and link them on here.
Right, that's the important bit out of the way... 😉
Actually no, the important bit is get those 'I'm a pussy' thoughts right out of your head. You're not, you're just getting on with it and bad days are allowed and normal and you really have to ride with them. But a pussy you are definitely not!
Body dysmorphia - that is entirely normal too. And in time you will be able to look at the scar. Even if it is just a sideways glance in the mirror for a second. It's new and it's (to you) ugly but in time it will be part of you and part of your 'story' and while you might not like it you will accept it. Don't try to rush yourself...
As for your comment about switching off medical programs: me and J couldn't even watch Scrubs!! Seriously. It used to make me cry! (and not just because it is actually crap)
As for filling your awake at 3am time - not sure what to suggest. How about taking up a new hobby? I was going to suggest knitting but I fear a backlash, so how about maybe trying to learn a new language or something? If it's something entirely new the concentration will be directed to that and away from the negative thoughts, if only for a little while. It might help?
Bye for now,
T
Mark, to re-enforce the above. I'm no expert but I've known a few folk who've had [b]MAJOR[/b] surgery and it does take some time to get your round. Baby steps buddy, don't try marathons yet. We are all behind you and you are an inspiration.
Anyway onto the important stuff. 3:00am wake up? Can't sleep? One word.
.
.
.
Airfix!
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Imagine...
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Mark
Nothing on your level, but I had a close brush with death a few years ago (passed out underwater, was unconscious, blue, not breathing & no detectable pulse on the surface) and I had many of the same reactions as you after that. I became massively aware of my own frailty and couldn't watch anything that involved any sort of possible medical/death scenarios - it all seeemed too close for comfort. I eventually got some assistance to work through it via counselling and it really helped me - not saying that works for everyone, but if you can find some sort of third party support (not Meg or us lot cos we're all too involved) then try it and you might find something that helps.
Oh, and aren't lions and tigers just big pussy's too.
Ooh, Coyote - good call on the Airfix - so much more manly than knitting too.
You're doing absolutely fine. What you're feeling is completely normal, your mind is also going through the healing process, and so these thoughts are part of that process.
Vocalising your thoughts are good for the soul, and help you to make sense of where you're at right now.
Mark, there's a few of us that live in the South-east, and I'm sure we'd all happily drive down to ride out with you :o)
Actually, with the night drawing in and the cold season turning up, knitting might not be such a bad idea. If Stallone can knit in Demolition Man (after being frozen for x years) then there will be no shame in Mark doing it. After all, films reflect reality...
Mark, keep your chin up! You're doing really well, and I had exactly the same sort of feeling when I had my heart problem diagnosed. It takes time to get over it, and you have a big advantage over me... Meg. From what you have said, she's supporting you in a way that my ex-wife never did. Between the two of you, you are strong enough for anything the world can throw at you. Hell, you've already proved you are stronger than a lot of people just by going through things to date.
Just remember who you are and where you and Meg are going to be when this is licked.
Now get out there and buy some Airfix. And some yarn.
Hi mate, this is my 1st post on this forum as i've only just discovered STW, normally spend my time on bikeradar.
I would just like to say that i think your a real inspiration to everyone, the strength and courage both you and Mrs Petesgaff have shown is truly amazing. If i could be half the person you are i'd be happy. Reading your updates and all the comments from others on here is a humbling experience. I honestly dont think anyone will view you as a "pussy" because you need physical contact with your wife Meg. I imagine that although you obviously have many friends and supporters it can be a very lonely place your in especially at 3am with your mind working overtime. Everyone needs someone or something as their support and she is blatantly the sun in your sky and i wish you both the best for you future together. I cannot finds the words or express my feelings enough on here to portray my admiration for you, more importantly the both of you.
You are not a coward, you are an amazingly brave person and if i were wearing a hat right now i'd be taking it off to you for sharing so publicly what i can only imagine have been your darkest and happiest days of your life.
Im sorry ive never met you (my lose) and i sincerely hope i have not offended you in any way by posting on here. All the best.
Don't under-rate the power of holding hands. Can you get the bean bag close enough to Meg's side of the bed (or corner if she does the starfish when on her own!) to hold her hand as you fall asleep? If you can - do it.
Language suggestion is brilliant - Michel Thomas does brilliant courses in lots of languages (mine are on CDs, but prob now on MP3 etc) that teach you how to speak without tying you in knots writing out vocab & grammar. It's like having a kindly, twinkly eyed uncle in the room with you. You'd have someone talking to you and you can talk back without being a mad person!
I could lend Mark our backup copy of MT's French course... <ahem>
Hi Mark,
Thanks so much for taking the time to update us all. It seems to me that you're doing fantastically well under extremely tough circumstances. I wholeheartedly agree with TN that there's no need to rush. Your scar will look "angry" for a fair while but will eventually settle down and you'll not really notice it. I felt the same way for a few months, showering and getting dressed was an exercise in distracting myself from the big slash down my front and it was a while before I could bring myself to wear V necks ... but now, I barely notice it, and when I do it makes me feel strong. Sometimes I wonder why other people are staring at my chest (yes, I am a girl, but I can assure you they are not staring for that reason ;o) and it takes me a few seconds to realise they're wondering what my story is. You will just forget about it in time, but I'm sure that will just happen naturally.
Delighted to hear how well you are doing walking wise - I think you are leaps and bounds ahead of most people so soon after heart surgery. Chapeau!
All the best,
Rona
If anyone wants to join me for a daytime ride along the seafront from Brighton to Worthing and back at any point please let me know.
Yep, I could be up for that if it's on a sat or sun (although not this sat)
The up at 3 am with negative thoughts doesn't sound good 😐 I would talk to a doctor about it - I'm sure there is something which you can take that will make you feel more relaxed and allow you to sleep better.
"[i]I have terrible body dysmorphia at the moment.[/i]"
I can well believe that, as I'm sure that as a PE teacher you are used to being both physically very fit, and also physically very active. But it seems to me that you are now slowly physically improving - increased walking, possibly cycling, etc, just give it time 8)
I'm in Brighton, and I like riding bikes! If you EVER fancy a gentle (or less gentle when you feel up to it) ride around brighton, Please do let me know, happy to give you a lift if you need it too (SO is in crowborough).
It would be great to meet you. (Pre 2010 STW Stag doooo ride!)
email in profile.
Cheers mate,
J
ooohh Airfix! happy days.
re: 3am can't sleep problem. Can I send over my end of month invoicing for you to do?
No you're no wuss, we all need physical contact of some sort-especially from loved ones and in tough or easy times.
(Sending a big singletrackworld hug and positive mental stuff)
Glad you're you're up and walking the dog!
only pussy on this thread is the bloke in my office currently who cries a bit every time he reads one of your updates.
You're an inspiration, keep going.
Mark - I can't really offer any helpful words about the issues you are having at the moment as I've never been in your position other than, and i'm sure i speak for everyone on here "virtual group hug" (in a manly kind of way 😉 )
I am however just along the coast in Worthing so when you do decide to go for a gentle spin on the seafront or, as JimboBrighton says, other less gentle spin when you feel up to it, let me know and I'll try to get myself over to Brighon to join you. It would be good to meet you 😀
e-mail address is in my profile 😀
Slightly closer to home (I think for you?) and us is the old Railway between Groombridge and Forrest row. Great Start ride because its nice and flat. The cafe in Forrest row does amazing ice cream, pizza and coffee. Me and my other half are free during the day as we both work from home. We would be honoured to go for a spin there with you or brighton.
Pete,
Hello, like Jimbo I'm in Brighton too and I can take time out in the week for a spin to Worthing & back - maybe a bite to eat in Carats too.
Let me know, I work flexi time and would only need a weeks notice to arrange a date. I can meet you anywhere in Brighton and it would be good to catch up with Jimbo again too if we manage to synchronise our dates with him.
Email in profile.
Take care
Hi Mark and family
Your walking more a day than most of us sitting on here I guess.
Don't rush your comeback. I wish I was somewhere near Brighton to help you back on your bike.
Maybe a short break from the north west is in order?
Right, now I've got the dust out of my eyes - again!
I struggle with words - I can but echo the words above that your strength and forthright approach to this are as inspiring as they are humbling...
Ok-advice time 🙂
Mrs MM is happy to teach you how to knit (or crochet.... )
Sleeping together.... Try getting an ubber bean bag for Meg as well - you could both then 'camp out' on the floor? Cuddling may be tricky but holding hands should be a lot easier?
Airfix- nah, I think you're more of a Meccano man myself - check out last nights James May programme on I-player for inspiration 🙂
scar - our little mate has a scar right around the base of his rib cage - he highly recomends BioOil (google it) for reducing redness....
Mark,
I'm sure you know my thoughts of admiration and unadulterated respect for your ability to put down what you think, what you feel and generally what's going with the old C. So, I'd second what Marsdenman has to say, grab another sleeping bag or two!!
Wish I lived closer to Brighton as i'd come down for a ride and a cuppa.
All the best to you both.
Jonathan
