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Keep posting as and when you want to, this is a reality check for a lot of us and we are all pulling for you. Beat it.
Good luck mate for when you need it and don't stop posting.
There are things more important than riding bikes and your/our health and loved ones are up there.
Harder to do than say but try not to worry about money, getting well will be the best way to sort that out yea?
Don't know about you but I know if I got cancer some payments/all of the morgage would get paid off.
Main thing is beating it so that doesn't matter though, and you seem to be up for that alright.
Good luck again, thoughts are with you and your family.
This is life - keep posting we all need to know how you are. When you get better we should organise a celebration STW supporters and survivors ride!
I really don't know what to say - Good Luck.
I'm concious of the fact that this thread might start to piss a few folks off.
Absolutely not a chance fella! I've been lurking on this thread since it started and I'm rooting for ya! Give 'em hell!
Hi Mark and Meg,
Like a lot of people I dont know either of you but I admire your strength!!
Keep up the posting while you want to and dont worry about pissing people off. Dont want to read it, dont click on the thread.
Dont know what more to say but livestrong.
Jon
I'm concious of the fact that this thread might start to piss a few folks off. I understand totally; this is a cycling forum, not somewhere for me to unload how I feel about my unfortunate situation. If people want me to bin it off, please let me know. I think that I'll probably start a blog at some point, and if people want to follow it thats fine.
If you stop updating, we will hunt you down and forcibly sit you in front of your pc to make you.
If this thread does piss anyone off then I would suggest to them that they find another cycling forum to use, only perhaps not so politely.
Great to hear you've had a break and you both enjoyed it so much, that will have done you the power of good I am sure.
Keep posting! It's a real inspiration.
Like everyone else has said, please keep posting - it's good to hear from you and posting could help keep you sane at times. And anyone who has a problem with it should, as others have also said, piss right off.
And I second Diane's suggestion - when you've kicked it's arse we should def have a supporters and survivors ride.
Keep at it, both of you - there is so much positive energy flowing your way you can't fail to kick this diseases sorry old arse.
While I was going through it all I had a similar problem with work and pay. I applied for disability living allowance. I did have a to 'lie' a bit on the form (because at that point I could walk more than a 100 meters, and some of the questions on there were quite ridiculous). They sent a doctor round to assess me, who was very understanding.
Depending on what Meg is doing she could apply for disability carers allowance.
And also apply for a disabled parking badge. All those payments at the hospital car park add up.
I also got a few grants from Macmillan, but this wasn't a regular payment, rather to ease the stress of a big shop or something like that.
Stayed out of this thread as i have no tact. Least i can say is good luck for the future.
On the financial side it may be worth checking if you have any critical illness cover in place, either linked to mortgage or life cover. This insurance does not only cover critical situations, it is also designed to help people in your situation who are going to need financial assistance whilst they complete their recovery.
Please dont stop posting. Your story is an inspiration to us all. People who dont want to read it just dont have to click on it.
Have a look at the Teachers Benevolent fund. They will give free financial advice and grants.
Keep posting,keep fighting, ride when you can.
We're here for you with what little we can offer.
Dont want to say good luck as you dont need luck. Your attitude is the thing you need, that and your loved ones/friends..
Thinking of you both.
Mark and Meg,
I can't add much more than has been said already. Other than a close friend of the family once had a large tumor removed from inside his head and has now been given the all clear after things looks pretty dodgy for a time. His attitude was similar to yours so I reckon that puts you in good stead.
On the other hand a good friend now living New York is really struggling - aggressive tumors in back, lungs and lymph. Thankfully he is involved in medical research (his father is a professor in the same field) - so he is now on his third different set of completly new chemo drugs. I hope this bit doesn't come across too negative.
Definitely keep posting.
With all best wishes
With fear of repeating and seeming like I am unable to offer anything original verbally.
I have had personal (family) experiences of cancer and related problems for the past 10 years or so, and while I echo every other positive comment towards your attitude and determination to get well, I sincerely wish you all the very best!
And yes, please do post and keep everyone informed of how things are going.
Jonathan.
First off - DON'T PANIC! Easily said but until you have a full set of results from the tests and scans then everyone (doctors included) are just guessing. They are human too and have a habit of sometimes vocalising thoughts they'd be better not to - so WAIT FOR ALL THE RESULTS.
Second - get a dictaphone and RECORD EVERYTHING. It's better than taking notes because you can get all the details down and it saves repeating it to every family memeber again and again!
If it is as bad as you itially thought - check a few basic financials; have you got a will? Have you got Critical Illness Cover to claim on? Are you a member of BUPA or similar? It's easier to concentrate on getting better when you're not worrying about money too.
FINALLY - stay as positive as you can in the situation and if you're not certain of things raise it with the doctors. My father-in-law was in hostipal recently and we had to get really shirty with the medical team to get some stright answers.
BEST OF LUCK AND I HOPE YOUR UP, ABOUT AND RIDING AGAIN SOON!
BEST OF LUCK AND I HOPE YOUR UP, ABOUT AND RIDING AGAIN SOON!
He already is ! quote :
[i]"I've just spent the last two days hammering the North York moors[/i]"
There's no keeping Our Petesgaff down you know 😀
........ no need to shout btw 😉
Good luck with this.... both of you.
Very sorry to hear about your problems.
We have recently seen a close friend and a relative go through treatment for Cancer (lymphoma and pancreatic cancer)
All i can say is that both have kept a massively positive outlook throughout their treatment and both are doing way better than the doctor's prognosis. The friend with lymphoma treated it like a fight and battled like the pig headed bloke he is, he is now in remission.
The only advice I can offer is to contact Macmillan for advice if your diagnosis is as you fear, they are incredibly helpful to both patients and family. There are also charities offering support for specific forms of cancer.
Also if you have access to the internet (or your partner does) then do as much research as you possibly can. We found out about a clinical trial for pancreatic cancer on line and successfully fought to have our relative put on the treatment. The doctors did not offer this at first. So far she has lived a year longer then they gave her.
good luck
Meg & Mark,
Keep going, be tough, and may your luck & life forces be strong.
My thoughts are with you.
mjg
Hey mate hows it going? hope all is well 🙂
Good luck. I hope you get through this. Ill try to follow how your getting on
piss a few folk off? hardly.its the chat forum and we are chatting about you. if they dont like it,they can go back to the bike forum.
enjoy yer rides!
Hello guys,
I must apologise for not having posted for a while. Meg and I went up to Yorkshire, came back and for while there didn't seem anything relevant to put down, so we didn't.
Last Friday, I decided to call the haematologist to see whether any results had come back. Despite my billigerent nature, I'd started to have a couple of 'wobbles' albeit privately. He phoned back while Meg and I were walking the dog, and gave me the results of the blood test, bone marrow test and bone scan. The blood test came back negative, and the other two were inconclusive. When I asked him what this meant, he stated that he did not know. I then asked what the next steps were, and when he failed to suggest anything I suggested both an MRI and a PET scan. He agreed.
The whole tone of the conversation made me angry; I feel like I shouldn't have to suggest the 'next step' to a bloody doctor. We didn't feel relief either; as he explained, the results were not definitive at all, and as such offered no comfort. I spent the entire weekend fuming, but by the time it came round to meeting him yesterday I'd become more rational and willing to listen.
The first test was to check whether any more blood had filtered into the pericardium around the heart, and apart from a little bit of residue things were good. The technician was very honest and helpful, and told me information I needed to know; that he'd only really ever seen this sort of thing when cancer was present etc.
I then travelled over to the other hospital to get the results I'd received on the phone the previous Friday, and to talk about what to do next. Despite having to wait nearly two hours past my appointment time, Meg and I went in there and proceeded to ask questions that we hoped could be answered.
I think we aquitted ourselves well and gave him a relatively hard time, but no new information was obtained. The holes in the skeleton are still very prominent and remain unexplained, and though there could be other explanations for the holes and the pericardia (rheumatoid arthritis, lupus etc) the blood around the heart is the issue. When I asked as to whether a blunt trauma could have caused it, the technician said that the amount of blood they took from me would be the result of "a 90mph car crash type of trauma..."!
So they've put me on the urgent list for a PET scan and an MRI scan in the next couple of weeks.
Today was my first day back at school, and thankfully the kids weren't in. The word had got around, and I found a fair few people looking at me with varying degrees of pity and discomfort. I didn't mind too much, and I don't blame people either, but I'm hoping that it will disappear with the manic first day tomorrow. My team-mates in the PE Department were pretty good; they realise what I'm like, and proceded to start taking the piss quite early on, for which I'm greatful.
There are a couple of worries. I found out that, because the school is an academy, it has its own absence sick policy. If I worked in a normal state school, I'd get 6 months full and 6 months half pay. In the Harris Federation, I get 50 days full and 50 days half pay. Happy days...
Cheers for listening, and can I say thanks to all of you that have pm'd me with advice and support. Especially Trudi and Julian. Not sure I could be quite so pro-active without you all!
M & M
Stay strong fella
livestrong and prosper mate
its beatable for sure. no matter how shit is gets or is, it can be beaten. you have a lot going in your favour.
Whenever I've had anything wrong with me they always picked up weird congenital or genetic strange things in any tests/scans used but never found out what the actual problem was. Miracle that my body works as well as it does actually. Thankfully every time the problems resolved themselves naturally with time. So do remember that everything that is found isn't always related to your illness. Seems strange that you should have to suggests the next steps yourselves, but keep it up, it is the best way. Hope you will find some answers soon.
I must apologise for not having posted for a while.
Absolutely no apology necessary as far as I'm concerned - you post whenever it suits you, and [i]if[/i] it suits you. Don't feel under any sort of obligation - just do it 'cause you [i]want[/i] to.
I'm sorry to hear that you've been unable to get more definitive answers to your questions and concerns - it must be very frustrating 😐 Although I guess that's the nature of things when doctors are carrying out investigating procedures....
Do your best not to dwell on the unknown Mark, and try to concentrate on the 'knowns'......eg. kids back soon - need to sort out what's what; bike ride at the weekend; visiting so-and-so; etc, etc. Keep positive 8)
thanks for the update - more people than you imagine will be following this (but, ded right, that doesn't mean you have to post up when you don't feel the need)
on the subject of your sick pay - bit morbid but ...
I took out some life insurance a few yrs ago (when I started off-piste skiing !) and one of the things covered was "dread disease". If I remember right that included "all" cancer and would pay on [u]diagnosis[/u]. I was told at the time that this was a fairly standard clause.
If you're worried that you may be tight on cash (and depending on diagnosis - still fingers crossed) might be worth checking whether any financial crap you've accumulated along the way may just include something similar in the small print ? Maybe somebody else here knows this stuff ?
Petesgaff, best wishes to you and your family. It must be a real roller coaster.
There are a lot of people who have never met you and prob never will, who are hoping for the best.
I'm sorry your docs were vague, as a doc when you don't know what's going on it's better not to give false hope or put your money on inconclusive tests, it helps no one in the long run.
I'm sure your docs would have been thinking about an MRI next, though i stand to be corrected.
It sounds as though you are going about things in a productive way, keep reading and asking questions. Yes your right, you shouldn't have to, but i would.
Good luck.
on a more practical note have you looked at your critical illness cover/ASU cover etc if you have any?
Just keep on keeping on.
BTW, I'm a biomedical scientist in haematology - if you need any help with the gobbledy gook let me know.
Only just stumbled accross this thread, and wish you both well.
Not my specialty so I can't help with the specifics, and in any case you are much better off with a face to face relationship with a doctor you trust as I am sure you are aware.
I agree with others here, who I suspect come from similar backgrounds to mine, that I am much more comfortable with a consultant who is prepared to admit he doesn't know all the answers and isn't prepared to take a punt on the basis of incomplete information. First do no harm.
Secondly, consultants tend to have highly specialised areas of knowledge and from my rapid perusal of your posts I can already see questions relating to heart, bone, bone marrow, connective tissue, possible cancer etc. which means potentially several different areas of knowledge which need to be, and will be, co-ordinated and tapped into.
I can understand your frustration, and it may or may not help you to know that your doctors are in all likelihood just as frustrated in their own way at not being able to advise, treat or reassure you. They will also be acutely aware that in the vast majority of cases it's this stage of uncertainty that is the worst part of any illness for patient and relatives.
There are good patient advice websites for most serious diseases, patient.co.uk seems a reasonable place to start and their info in my specialist area looks sensible enough. For cancer try Cancer Research UK
Finally, I agree with the advice about financial support. If you have a mortgage insurance or life insurance you may well find that in the event of cancer being diagnosed the policy pays out. Check now for peace of mind and if fate is kind you will never need to claim.
Are PET scans the ones that use dark matter? if so, is it worth getting Prof. Hawkins on the case? Maybe the holes in yer frame are black holes!?! The wife says you need Dr.House coz he's good at mysteries.
keep us up-to-date
Update:
I had the PET scan, and am due to have 4 seperate MRI's on Monday. I got in from work today to find the phone ringing. On answering it, a sister from the oncology department at Maidstone Hospital informed me that they'd been trying to get hold of me all day (my mobile had run out) in order to meet up with the head of thoracic surgery from Guy's hospital in London, who holds a weekly clinic there. She asked me if I could attend a meeting tomorrow at Guy's, but wen I asked her if she could give me any information as to the nature of the meeting she said she couldn't. After thanking her for her help, she replied;
"That's okay Mark, look forward to seeing you down here soon"
Cheers....
So now I'm shitting it, whilst trying not to rattle my other half. So my presumption is that by this time tomorrow I'll know what I'm fighting against. I'll post again soon.
Can't stop my pissing legs shaking....
hey pete if your looking for info on the internet stop, you'll only read horror stories, what the nurse said could just be a turn of speech. go make yourself a cup of tea or cocoa and relax with your wife perhaps plan where your going to go on holiday when this chapter in your life is finished. good luck for tomorrow
I guess it is something that you can try to prepare for but not really know how you will feel until it happens. Thanks for posting, thoughts are still with you and your family. Hope tomorrow is the day you get some solid answers and the news is as good as it can be.
Stop your pissing legs shaking you big girl!
Hey! On the plus side, we got engaged on Saturday!
good luck, keep posting, and never apologise for not posting!!
All the best for tomorrow
Congrats!
and congratulations!!!
keep strong matey, will be thinking of you tomorrow
Congratulations, to both of you, unless you are punching well above your weight in which case, nice one 🙂
Congratulations! I hope tommorrow goes well for you, another hurdle to jump in your recovery I suppose. I hope you are getting something positive from these posts. because I know I am. Everytime a new one appears I am reminded how petty most of my troubles really are. Cheers, and get well soon.