Are you ready? Then I shall begin…

Meg and I went to Bath for a night in a nice hotel on the Sunday after the wedding day. I was lovely, but my energy levels were pretty low after the effort of the day, so it was relatively low key and we came back on the Monday. On Tuesday, I made my way up to Hammersmith Hospital in order to store some semem in case the chemo affected my fertility. We were pretty annoyed about this; we've been asking all along for somewhere to store 'stuff', and never really been given a concrete answer, so the pressure of having to give samples the day before and on the day of chemo is pretty high.

There is no way I could possibly describe the uncomfortable nature of trying to blow your stack in such a sterile environment. You are given a container, told to go into a room, and perform your magic. I have never seen such a grotty ensemble of jazz mags in my entire life. This might imply that I am some sort of expert in the field, but perms have never been my thing, and I couldn't find any material without a massive bouffant!

It took me 45 mins, and eventually I completed the task, krypton factor style, sweaty and through gritted teeth. I then went for a coffee whilst they analysed the sample, and thankfully it was fine. I keep forgetting that it was only 3 1/2 weeks ago since my heart surgery, and sometimes I'm a little hard on myself for not being up to my own personal standards. Walking back to the car for a three hour drive back I found myself cursing my lack of energy, and alarming a poor women walking past me who must have thought I was a nutter…

Yesterday was chemo day. We had to get to three different hospitals (Hammersmith = Sample, Brompton = ECG/Echo, Royal Marsden = Chemo), which required an early start. The sample situation is much easier when your partner comes in with you (wink), and the ECG/Echo was routine to look at the state of the heart post-surgery.

Next was the Royal Marsden, where we saw a doctor who informed us of some changes. The lytic lesions on my hips and pelvis mentioned previously in this post were picked up by the CT scan taken last week, and are secondaries to the angiosarcoma. They have also spread to my shoulder, which means that the chemo will have to be used to reduce or slow them down as well as the sarcoma left in my heart. We were also told that the disease was incurable with today's medicine, and that the hope is to maintain rather than cure – I will have this with me for the rest of my life.

All along I have known this deep down, but I think that Meg hadn't realised it,and it came as a terrible shock to her. I simply cannot describe the sadness I felt looking at my beautiful wife and not being able to take away the pain. Regardless of how I tackle this disease, the fact remains that we are a partnership, and without her I cannot do this.

After this the first bout of chemo was fine. I slept for the duration, and then rested in the car until we got home. Meg and I cuddled up, and waited for a new day and a new challenge.

I will require some advice on stuff. the game plan is as always to maintain life, and the types of drugs and chemo I have to take have certain side effects. The first is a lack of stimulus in the nerve endings in the fingers, so I need you guys to think about ways in which I can stimulate them artificially.

There is a guy who is still alive 12 years after being diagnosed with this pissing disease. Lets make it two.

Mark

Sounds like a rough day (says Mrs Understatement)

If there is any help/advice me or J can give, please mail me. I guess the treatment you're getting will probably be a slightly different cocktail to his but maybe he can give some tips on how to make dealing with some of the side effects a bit easier.

Mark,

I'm so glad you found the time and energy to update us, as there are a LOT of people here that are rooting for you.

Congratulations on the big day, it's something you'll remember forever.
As far as the recovery goes, take one day at a time.

and Meg, take a big hug from everyone here, you're both incredible people 🙂

As ever a frank, humbling, honest and yet inspiring post of which i thank you. Once again i say i am rooting for you but know you are a winner so hang in there.

On a lighter note thanks for the top tip that porn in the tossing rooms is wa*k 😉 so i will take my own if ever i need to donate. 😉

can't offer any advice other than stay as active as possible – exercise is medicine – for the mind and body

live long and prosper

Mark,

You're a strong bloke, and you _can_ beat this. Every day, week, month that passes gives you more of a chance of beating it properly as more new medicines comes onto the scene.

We're rooting for you. You're doing really well.

I have no idea what to say.

All I know is that it can be beaten.

So you can beat it.

Count me in as another rooting for you!

How about learning to play a guitar or yukele – may help stimulate the nerves in your fingers. And you can anoy your neighbours at the same time! 😉

Some inspiration here http://www.youtube.com/watch?v=puSkP3uym5k

It's a great listen anyhow.

Pete aka Woodsman

There is a guy who is still alive 12 years after being diagnosed with this pissing disease.

That really is a positive thought. It seems to me that hardly a year passes without a new breakthrough in the fight against cancer – just think how many breakthroughs there must have been in the last 12 years, and how much graver the situation was for the guy 12 years ago – and, he's still in there !

Undoubtedly in the next 12 years there will be many more advances, and I think everyone should treat raising funds for cancer research as something of a priority. So much of what was once incurable, is now curable.
Good luck, keep positive, take one day at a time, and don't be hard on yourself ! 8)

Mark – Your honesty with us, a bunch of strangers, is staggering, and your attitude is admirable. Go for it.

The first is a lack of stimulus in the nerve endings in the fingers, so I need you guys to think about ways in which I can stimulate them artificially.

I'm not sure how creative you are but what about learning an instrument like the piano/keyboard, guitar, tin whistle or lots other which need gentle finger work? Alternatively you could draw or paint or make things like jewellery, sculptures or even make toys. They are also very good methods of clearing stress or any cobwebs which build up, saves a few quid for Christmas presents too 😀

All the best and break a leg

roper

Having been in "The Sample Room" several times myself, I can empathise with you Mark. 70's porn and car mags(?!) seem to be the norm 🙂

Pecker up ( 😉 ), you're going to kick this thing as hard as it needs kicking to keep it under control!!

Best of luck 😀

sitting at work, stressed over business, and I popped over to STW for a tea break. read this thread again (haven’t caught up for the last 3 weeks) and man! tears of love rolling down my cheeks. Mark and the STW folks – you've grounded me. talk about putting life, work, play, relationships, health… into perspective.

never met any of you. but love the profound (and yet often petty) nature of this site…

Mark & Meg – a big fat hug from a stranger!

Good to hear you are keeping on top of it.

Frank and humbling as usual Mark

Not sure what to say – I guess I'd give myself a 'goal a day' to keep your spirits up. Even if it doesn't make sense to anyone else. 😆

You've got a lot of bottle kid.

woody2000 Are you suggesting Singletrack donates a good pile of back issues to all such 'sampling' facilities? :-/

i've kept up with it from the sidelines but glad I picked Macmillan as my chosen charity now I've got into the London marathon. I was looking for some motivation to get out the door, think I just found it! Everyday worries seem very insignificant. Every time I'm struggling to get out the door I'll think of your resolve and strength and kick my arse out onto the road. maybe we could get an STW posse going on the day
Keep fighting

Words fail me, If I were in the same room as you I'd give you both a very, very big hug, and try to convey the joy I feel that you had a great wedding day, every ounce of strength I could pass on, but perhaps most of all thanks.

I have never met you, but through this thread you have come into my life and I care how this all goes, I have learned about life, love and the true strength that at least some of us carry within us. So thank you, and enjoy your 1st week anniversary.

I think everyone should treat raising funds for cancer research as something of a priority

I'm looking to do London to Paris for Cancer Research next year. Doing it supported seems to take about £700 from the money raised which sucks. Anyone done it unsupported? Costs were suggested to be about £200. If we got a reasonable group of people from here together, we could make it viable and cheap?

Keep your pecker up Mark 😉 Help him Meg 😉 That first guy's got 12 years on you, so there's your first target. Still very dusty here, BTW.

bloody dusty down here too.

Mark, firstly let me say how well you are doing with all of this that is going on, taking time to speak to us all is inspiring. You have asked for some advice which I am happy to help with. Whilst I am medical, I am not an oncologist, but do know exactly what you are going through and how it affects you. Obviously, advice will come across in a more matter of fact manner which is not the real tone of this forum. If you wish for me to spend more time going in to details here then I will, if not I will be happy to contact you directly.
best of luck with the chemo and to Meg and yourself

Your humour amazes me. I find myself laughing a crying at the same time with every new post.

Is there anyway to get in touch with this chap you talk of and get some postive advice?

Keep letting us know how you're getting on.

To Mark and Megan a big hug.
xx

I've come over all emotional. This tale has brought home to me the very human cost cancer inflicts. You have handled this over whelming ordeal with dignity and pride and for that I wish you the very best of luck. You are a great example to all of us.

I say I have come over all emotional because your tale has made me stop and think. Tonight I am going to go home and tell my wife what she means to me and relay your story or courage and endeavor. Thank-you

Skid-mark,

If you go home tonight, and you tell your wife that you love her, then as far as I'm concerned all this is worth it.

Thanks,

Mark

sample room description bought some memories back not the best place for a shuffle. As always I am emotional after reading your posts. three hospitals in one day traveling round London weeks after heart surgery could your specialist intervene and get things centralised for you. Conserving energy must be a priority. Stimulating the fingers will a foam ball like old people use for arthritis help squeezeing it. sorry about spelling I am hopeless at it.

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.

fckn 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 with you.