[Closed] I think I'm about to be diagnosed with cancer, and I'm fairly scared.

FAB
U
LOUS 🙂

teachermcnic - I wondered how long it would take you to pop you combined heads up on here! You'll be pleased to know that the card from the Park lot contained just a card and thankfully no underwear!!

Thanks for all the messages about how good Meg looked at the wedding. And thanks for the begrudging messages about how I look 'alright'...!

Back to business;

I went for my third chemo session at the Marsden yesterday. After the bloods were taken, and I'd performed my obligitory 'please sit here and wait whilst other people come in, get treated and leave before you' session I was finally sent through to start my treatment.

After having my premeds (steriods, piriton), which were higher than normal due to my allergic reation last week, the Paclitaxel (Taxol) was to be delivered at half the rate of last week, over two hours. Lo and behold, after ten minutes of delivery, I had another allergic reaction and the treatment was stopped. Cue several nurses umming and ahhing, and the calling for the oncologist.

After a polte argument about other techniques for delivery (according to her, very few; "You can come in as an in-patient Mr Fradgley, we'll flood your system 24 hours beforehand and hope that you don't have an allergic reaction")she stated that the drug wasn't actually the issue; apparently its the dye/liquid that they use in conjunction with the Paclitaxel that causes the reaction. So I argued that maybe they should replace that element instead. She and her team were obviously pretty exasperated with their non-conformist patient and retreated to the nurses station to talk.

Now heres the strange bit.

I'm on the list for approval for a drug called Caelyx. Apparently ts pretty difficult to get, and costly, so the Royal Marsden Team have to apply to my local PCT to pay for it before they can deliver it. We were informed originally that the state of play would be to have the Paclitaxel for 6 weeks, and by that time the Caelyx would hopefully be available, but both drugs would be used in conjunction with each other.
We've been waiting to hear about the Caelyx for ages, but with no news.

The oncologist walks out of the nurses station with a big smile, puts here hand on my shoulder and declares that unbelievably, the approval for the Caelyx has been approved and they can start next week with no more need to take the Paclitaxel.

I smell a rat. It's all a little to convenient for me. I cause a problem, ask too many questions and all of a sudden the drug that we'd specifically asked to be informed about the second it was approved miraculously comes on the scene? And I no longer need the Paclitaxel, even though they set it out in the original treatment? Hmmmmmm.......

There are apparently other ways in which Paclitaxel can be delivered without this dye/liquid. The oncologist must know this, yet nothing was said. Has anyone out there had other similar experiences? I need to know; I'm going to phone the hospital today and discuss. It seems that they actively encourage patients not to ask questions that are difficult to answer....

By the way, you all look lovely today.

Mark

Mark you truly are an inspiration. Keep on fighting!

On the other hand, you are getting the drug now...

Looking at the pics above you should be able to frighten the disease!

Good luck, keep fighting and look after Meg.

And thanks for the begrudging messages about how I look 'alright'...!

Great photos which clearly convey your happy day.

The best of luck to you both!

Hmm probably comes down to cost i guess - only so much money available etc so keep shouting and demanding , oh and remember to say thankyou when they yield! 😀

mark you look so well i began to wonder if you might be the most insensitive troll of all time. 😀

Mark, Ask as many difficult questions of them as you can think up.

Best of luck with getting the best treatment for yourself.

Why thankyou Mark, I've just had my hair done. ( just love your humour).

Keep plugging away. I've so got my fingers crossed that this new drug starts asap.

Hope the new drug does the business mate.

IME when trying to get treatment you need, you've got to shout and scream for it (say thanks when you get it), it's really, really hard if being belligerant and a pain in the arse isn't in your nature, but you've got to do what you've got to do.

if it was your kid going through treatment, you would ask every single question and not get fobbed off. don't give up making a fuss - it's the fight in you that's going to get you better.

They say it's the squeeky wheel that gets the oil.....

p.s. didn't say how ace your photos looked - both of you look fantastic. you're also a big bugger - if I was a consultant I'd give you anything you wanted!

Keep chipping away at it mate.

That looks like a pretty good wedding. Good on yer fella, best to both of you.

Wishing you well from Belfast

<<<<<hugs>>>>>>

Just spent an hour catching. Stay in there faces (I know you will), hope the new med works out.

Looks like you both had a wonderful day.

Not I can add really, just keep in there guys and our thoughts are with you.

[url= http://www.nice.org.uk/search/guidancesearchresults.jsp?keywords=Caelyx+&currentpage=&paginatedpage=&searchType=All&sort=&pageSize=&startYearMonth=&endYearMonth=&refId=&fromSearch=true ]NICE[/url] have some guidance on here but it looks like it's all un-related to your particular case (Sorry if you are well aware of this all by the way). Just thought it might be a decent source of info for you so you can be fully informed when questioning.

Well done for informing yourself and asking the awkward questions. Looks like by doing so you've pushed the odds a bit more in your favour. Absolutely nothing wrong with being assertive with medics especially when your life is at stake. Keep it up.

And thanks for the begrudging messages about how I look 'alright'...!

The awful truth is ... I took the park underwear ... I promise to send it on now you have found me out!

It is always worrying when health professionals see you as being a nuisance for asking pesky interfering questions. It used to be the case whereby patients never questioned medics or priests. Now look at the mess the country is in. Franklin D. Roosevelt once said "Do Something. If it works, do more of it. If it doesn't, do something else." I always thought it was a nice simple philosophy to apply to most situations. Maybe the staff need to review their protocols.

Hope all goes well and I promise to pass on the underwear.

I went out with Simon (Napalm) for a ride yesterday, around Brighton and the South Downs way. Nothing too dramatic, just the first time on a bike since the L2B! Despite having no back brake (!), and forgetting that I rode singlespeed (!), I had an amazing ride with a very kind and generous fella, who treated me with empathy, not pity.

Thanks Si. For the first time in a long while I felt normal. The road to recovery starts here.

That's really great news Mark, there is something for you to build on, now you just need to organise the biggest forum ride ever 😀

HEADLINES:

MAN RECOVERING FROM CANCER OPTS FOR SINGLESPEED SOUTH DOWNS RIDE AS HIS COMEBACK.

Great news Mark. On that form, buy Meg a french dictionary because she'll be busy in July for at least the next 7 years following you around. How do you look in yellow by the way?

petesgaff - Member

I went out with Simon (Napalm) for a ride yesterday

I'm glad you're married. The country needs your genes in the pool, that's all I can say. Other words fail me...

thefallguy - Member

That's really great news Mark, there is something for you to build on, now you just need to organise the biggest forum ride ever

Yes.

Fantastic Mark, here's to plenty more 🙂

Fantastic news Mark that you are back on your bike again so soon after your heart operation 🙂

Your determined spirit will stand you in good stead to beat this disease & getting exercise on your bike will improve your fitness & de-stress your mind.

If you are not going too far or too fast perhaps Meg can join you next time?

Take care & please keep posting the updates

Cogratualtions on the wedding, it looks amazing 🙂

Wow, keep the involvement with the treatment dude, it must be good to be so focused and invovled.

I've never got so emotional about someone I don't know. Your story is an inspiration.

Ah, back on the bike!! Great news. The recovery DOES start here, keep it up. 😀

Yay for bike riding! That's gotta help moral surely?

Now, I think it's time you start planning a big STW meet, or perhaps an STW tour of britain, so you can meet your public 😉

Glad to hear you're back in the saddle - keep it up!

If you fancy another ride around Brighton, look me up!

Good man!

Get in my son!

Cool 😀

Nice one Mark

now that, Sir, is absolutely Bucking Frilliant news 😀
Glad you got out there - would dearly love to hear what your heart surgeon especially has to say about that!
Offer (and doors!) still open for when you and Meg fancy a trip up north.....
Regards to you and Meg
C&S

I often read this thread when I can, and to echo a lot of other comments about putting their own personal problems into perspective.

You're quite the inspiration Mark & Meg.

Looking super fly on your wedding day might I add!

all the best,
jt

Flipping 'eck! Out for a ride, good on you.

Great to see you bouncy back a true fighter, your wedding day looked ace mine was one of my highlights of my life.

Don't be afraid to ask questions it's your right, I never have a problem with patients asking me questions and most won't. However, careful how you word them and put them across as it's that get professionals backs up, not suggesting this what you did.

IIRC the new drug your going on has just been in the news as many PCT are refusing to fund it at all so you've been very fortunate.

Keep fighting.

Hi everyone, Meg here, I just noticed this from crispy bacon...

"If you are not going too far or too fast perhaps Meg can join you next time?"

Now I may not be a seasoned cyclist, but you ask Mark what happened at Kielder Water a year or so back and you will find that I can whoop his ass when it comes to hills!!

Seriously, thanks for all the comments guys, and to Simon for helping make Friday's ride happen.

Mrs Petesgaff x

Sadly true...

Mr Petesgaff

🙂

Great news Mark!
Wedding looks fantastic!!!!! 😀

Oh, and I have to agree with MrsFlash's comment!! I'll let you decide which comment I'm referring to! 8)

Sadly true...

haha nothing to be ashamed off.
been following posts for a while never knew what to say. might sound like a load of guff but you both have helped me stay positive and motivated through, well relatively trivial bs. thanks for that and keep up the good work. and bring on the massive forum ride!!!

 

Mrs PG - I howled with laughter at that! He may be a big, good looking bloke, but no reason why his smaller, good-looking wife shouldn't whup him uphill and then remind him of it .... when it suits! Go girl.

BTW - 400+ miles away here, but if there's a STW ride on I'll be up for it. Maybe we can ride round to the hospital and inform them of our support for Mark's serious intention to get the best of everything he needs in order to get better?!

If you go for spin with him perhaps he will be able to climb like his wife with a little training. 😀

keep up the good work wish you both the best.

Now I may not be a seasoned cyclist, but you ask Mark what happened at Kielder Water a year or so back and you will find that I can whoop his ass when it comes to hills!!

Lol - now now, I don't want you two having a barney on my account. Sounds like Mark needs to get some gears or Meg needs to slow down a bit 😆

Take care guys

The Pastyland Massiv

Hi Pete,

I've not read all 27 pages fully yet but am working on it. Just wanted to say good on you for getting out on your bike. Having gone through cancer treatments for thyroid cancer I can definately say that getting out on a bike helped with the recovery process. That together with amazing help from family, friends and colleagues. I don't know whether saying normal is the right way to put it [I'm never normal at the best of times] but the bike can help forget your worries and take you to that place where any problem can be pushed to the back of your mind. The only sad thing about the riding is that my local bike shop at the time down in Devon was lending me some top of the range demo bikes to ride during recovery. Was just a pain when I had to return to my rubbish hardtail. Anyway, going to get back to reading posts. I'm only in Portsmouth so if ever you need riding company then drop me a line.

All the best

Emyr

Great to hear your back on your bike, also all the best for your recovery you did look well in the Photo's...Meg is smokin..Lucky bugger! 😉