Hi all, just thought I’d put an update up, it’s been an up and down 6 months since my initial diagnosis and I’ve not been around here much.

Some of you might remember I was diagnosed with CML and the outlook was pretty good, a few pills a few test here and there and pretty much life as normal. However, I’ve had a number of problems with the drugs either not working as well as they should and some side effects like awful muscle, bone and joint pain oh and some eye sight problems too. A lot of the time I was pretty good, I worked sometimes and got some diy done at home, I even got a few rides in with a mate and felt so good for them. So after 6 months off and on a number of drugs trying to get on an even keel it’s all change.

I was having another bout of bone pain last week so came in to hospital to get things checked out. After some tests including another bone marrow aspiration, comparing blood slides from the past few weeks it seems my leukaemia has mutated again and I now have ALL which has been a huge bombshell. http://www.macmillan.org.uk/Cancerinformation/Cancertypes/Leukaemiaacutelymphoblastic/ALL.aspx

I was allowed home for the night to sort a few things out see my wife and son before being admitted the next morning. So I’m all checked in now, I’ve got my own room and bathroom so this is me now for the next month+ then hopefully a break at home and it’ll be off and on like that for the next year or more with intensive chemotherapy and a bone marrow transplant.

I’m all set up here with a tv, music iPad etc. and have loads of friends and family lined up for visits but being cooped up is going to be tough, I’m not allowed out of my room at all at the moment. The hardest thing is my son (2.5 yo) can’t visit me, so it’s Skype only. I feel like I’m going to miss so much. I’ve always been a hands on dad, there pretty much every morning and night, playing, swimming together and weekly dad days at home/ out and about the nursery run was with the Croozer on the back of my bike 2/3 times a week. So not seeing him is tough already, Skype and whatsapp photos and videos are a god send but not the same as a cuddle with my little man.

So it’s going to be a rough year or two until I’m cured, there are a few sort of silver linings like with cml it was going to be life long treatment/testing etc. albeit fairly simple and pain free but after chemo and a BMT I’ll be cured for good which will be great. Just have to hope for no long term side effects from the treatments, fingers crossed.

I’ve not looked into it yet but I’m hoping my mortgage will be paid off, which will be a huge weight off my mind with regards my wife and sons security/future should things not go 100% to plan.

My employers have been very supportive and helpful but full sick pay probably won’t last the full time I’m going to need off, they’ve not sent me down the normal sick new route or required sick notes so who knows they me stick with me the full course. They’ve been great so far.

So much time to think

Any of you local guys who know your welcome to drop in,no visiting times here as such come whenever, email/txt or something to make sure I’m feeling ok, there are going to be bad days ahead and possibly periods of stricter isolation.

Lots of tears the last few days, so many supportive friends has been great. Even my neighbour (60 yo big mans man) broke down and offered anything he could to help me and my wife, which is very touching.

Fingers crossed my brother is a bone marrow match, if not though the international register is expected to be a 95% chance of a match which is not bad.

I’ve always been a blood donor and even did platelet donations for years and been on the Anthony Nolan BM register, so finger crossed karma works and I get a match. I know there are a lot on blood donors on here, it being discussed a few times but if I could ask you to consider joining the the Anthony Nolan register that’d be amazing.
They’re specifically testing my brother but speaking to my consultant any friends/other family who offer to be tested etc the odds are crazy but registering is so worthwhile the more that do the better, not just for me but current and future leukaemia sufferers. Chances are if my brothers not a match I’ll be matched with the friend of a friend etc of somebody else who’s suffered or just felt it worthwhile, that’s got to be worth good karma points.

For those that think it’s a nasty procedure, it’s not, not any more. All they do now is give you an injection to promote white cell growth, wait a few days then it’s similar to just giving blood. One needle in your arm for an hour or two and it’ll go into a machine separate off what they need and give you the rest back. Very simple and very low risk with next to no time off work or anything, a big stem forward from years ago when it was more intrusive and painful.

Anyway if any of you would consider that it’d be amazing.

The last few days have been busy with visitors, X-rays, heart echo, Central lines fitted which I’m hoping have now stopped bleeding, 2 days and nights of bleeding was getting irritating. I’ve had half a dozen bags of platelet another is just on the way to be followed by a whole blood transfusion too. Oral chemo and dozens of pills each day anti viral, bacterial, fungal and pain killers, mouth washes …. IV chemo to start soon!

Tough times ahead but I’m going to fight with everything I’ve got. I’ve got too much to live for.

Thanks either way if you stuck with my ramble, I hope it makes some kind of sense.

Keith

all the best keith, hope you beat this thing

Woah! Sounds like a lot to deal with, but getting the treatment that you need?

How come your son can’t come and see you? Risk of giving you a bug, while receiving treatment?
That’s gotta be hard, but better to get the right treatment for a full recovery, I guess.

Good to hear that work are being supportive – I guess that’s one less thing to perhaps worry about for the moment. Sounds like you have a strong support network. You mention visitors, but where are you based?

Had no idea the bone marrow test thing was just like giving blood now. I thought it was injections in your bones etc….(dunno why, and if it’s ever been that)
Perhaps the Anthony Nolan register people should do more to publicise that it’s not as bad a people probably think it is, to get on the register and potentially help.

Best wishes…another Keith(26er though)

Best of luck Keith! Not much more to say than that.

wow, that’s pretty shit news.

Not sure I know you but I think you’re southampton-based, so in the general, presumably ?

I’m there 2-3 days a week so shout up if you need anything bringing in, or are short of visitors who you actually know 😳

Best wishes for the next few months – I hope it’s bearable and all goes well

jings, sounds extremely tough. I have been feeling sorry for myself since diagnosis and surgery for prostate cancer end of last year, but I think having read your update I need to MTFU. Hope all goes well with your treatment. Kids have remarkable resilience so I’m sure the wee guy will adapt pretty quickly

Positive thoughts and healing vibes to you. I think I may have mentioned it in your previous post but my three year old son was diagnosed with ALL last June. I’m not sure if it differs in adults but whilst there have been plenty of ups and downs but he’s now clear and steadily getting back to normal. It’s amazing what the human body can endure. My email address is in my profile if you ever need to talk – not sure if I can offer anything useful but will try.

Good luck dude, my ex’s son has Leukemia and is fighting hard, things seem positive at the moment.

Fingers crossed for you Keith

Yeah I’m in the right place now, yeah everything is about infections, my immune system has been destroyed already and will get worse. basically my treatment has to destroy everything to build be back up again with a donors bone marrow/stem cells.

I’m in Southampton hospital I live in the new forest, used to ride with the Newforce guys a lot, less so in recent years mainly because of renovating the house and having a baby etc

Bgd that must have been so hard to go though, I’m glad he’s recovered, positive ALL stories are always good to hear. I worry about my wife too. She’s putting a brave face but I know she’s finding it hard. There are lots of friends and family offering to help but going to bed alone each night must be hard for her too.

Best of luck Keith.

I really wish you all the best.

Best of luck Keith, and great comment on the bone marrow transplant procedure.

Coincidentally, I’m just off to give blood now, and am already on the register.

Keith I don’t know you but you must be being amazingly brave for your wife and kid right now, I can’t imagine how hard it must be being seperated – can only think that it must focus you’re mind on getting better (like it needed any more focusing). As above kids are amazing adaptable things so its going to be much harder on you than him I imagine (again – lot of imagining going on, hoping I don’t have to face up to what you’re doing anytime soon). It will feel like an age before you will hold you lad again but when you look back this will be a hiccup in an otherwise lifelong relationship. And by lifelong I mean a long time, not just two weeks. Bad choice of words maybe. geez this is like when I tell my missus we’ll be together until we die and I get the stare – I mean together forever – after we die as well of course. I’m rambling now. Whats the wi-fi like eh?

Best of luck Keith, wish you all the best .

So it’s going to be a rough year or two until I’m cured

Just hold that thought and stay strong.

All the best Keith, show it the door!

Good luck Keith. Hope the family are coping.

Cheers all

Wifi is rubbish, been down for 2 days now, we adults use the Teenage cancer trusts wifi next door, ok when it works. Fingers crossed it’s an unusual glitch. If I were allowed off the ward I’d be tempted to fiddle there’s a rack outside TCT ward next door so I assume it’s in there and probably just needs a reboot.
I’m tethered to my mobile at the mo which is working fine even after I dropped it in the floor and smashed the screen

Good luck, Keith. Sounds like you have a good support team, and more importantly a decent connection to the outside world!

I don’t want to hijack or derail your thread so will just leave this here with no further comment:

http://www.anthonynolan.org/8-ways-you-could-save-life/donate-your-stem-cells/apply-join-our-register

All the best Keith.

keep chipper Keith.

If the wifi stays rubbish think about getting a Mifi dongle from three with a 12Gb preload on it if the signal is OK there.

a month pah you ll wonder where it went… did an 8 week stretch in the infirmary once with cyril smith in the next bed…big hugs for the mrs and kids cos it ll be hard work for them.. good luck fella.

Good luck chap! You can sort this.

Where are you in the country by the way?

The hardest thing is my son (2.5 yo) can’t visit me

Wow, that’s tough to read, cannot imagine how that would feel.

Everyone should be on the donor register.

Good luck Keith

I’m in Southampton hospital.

Looking forward to Skypeing the little man for a bedtime stories again as soon as the wifi is up, 3G mobile tether isn’t cutting it for Skype video 🙁 4g phone should be here in a day or two after I dropped my current one.
Stoner yep that’s an option on the list if it carries on being down or rubbish. I recon my work would sponsor a wifi set up for the adults ward if I asked too, they’ve got a decent charity budget which they like to spend on real stuff instead of just donating to x or y charity

My central lines been ok all day and has just started bleeding again arrggghhhh! Got a couple of bags of platelets coming and a unit or two of blood to which should help a lot

all the best Keith. keep strong mate. everything crossed for a good outcome for you mate.

Best wishes to you and your family

Keep your great positive mental attitude and the fight even when you begin to feel really ill from the chemo etc, I really do believe that’s part of the way of beating the disease. As you no doubt seem to know, talking about it helps too! I was last told that I could no longer donate blood or playlets or plasma due to my own long term disease and I feel real bad about it as my daughter went through a year of chemo etc and I can no longer help in a way that has a direct effect for similar patients.
All I can add is if you STW readers reading this thread don’t already donate or are on the register, please do it, it’s relatively painless and is so so important, one day it could be you needing blood, bone marrow etc etc.

Hello Keith,

Are you up for a visit on Sunday?

Bull heart/mark I don’t know what to say, yes I should be, but you’re far from local I can’t expect you to come all that way, but if your in the area it’d be amazing to meet, I read much of your posts and posted a few times

I’m in the area, and I like grapes. It’s a date! And you’ll be disappointed; I’m dumpy and smell of almonds…

PM me and we’ll sort something out.

Keith. All the best dude. I’m rooting for a straightforward recovery for you.

Jay

Sounds rough as Hell but your attitude is fantastic. Give it stick and all the luck in the world.

I don’t have anything useful to say, but you sound pretty calm about it, which has to be good. Keep posting here, and I hope it goes well.

My brother-in-law is in a similar position, although he’s getting his own stem cells to start with.

There are some very brave people on this forum. There but for the grace of god.

I really hope you kick it into touch. And thank you for reminding me to get in touch with the Anthony Nolan guys and register as a potential donor.

Best Wishes Keith, you’re in good hands by the sounds of it! 😉

Best wishes Keith!

My Mother had something similar.

The treatment will make you feel crap but keep mentally busy and positive.

I studied and worked on cancer years ago and then to see people go through it in the wards.

It’s tough but You are Tougher! Rooting for you!

Cheers again for best wishes, mark I’ll pm today. No grapes here though one of my many food rules. Plenty of chocolate though. I can eat as much as I like at the moment the way I’m loosing weight. I’m being encouraged to eat as much as I can at the moment before the IV chemo starts doesn’t sound like I’m going to want to eat much then

I certainly don’t feel brave, I’ve cried everyday since my diagnosis at some point or another. Starting to getting it together more thought with less now though. The practical facts and figures side of me and concentrating on friends and family really helps keep positive

I certainly don’t feel brave, I’ve cried everyday since my diagnosis at some point or another. Starting to getting it together more thought with less now though. The practical facts and figures side of me and concentrating on friends and family really helps keep positive

Don’t feel bad about crying, please. I did same when diagnosed with cancer, and often still do; it’s wholly natural. The mind is great at focussing on practical stuff, so IMO the treatment phases are easier mentally than the waiting, as during treatment things are ‘actually happening’ rather than just your mind going through scenario’s

I certainly don’t feel brave, I’ve cried everyday since my diagnosis at some point or another. Starting to getting it together more thought with less now though. The practical facts and figures side of me and concentrating on friends and family really helps keep positive

I can echo the above advice as well. I had grade 3/4 (I think) Hodgkin’s Lymphoma when I was 21 – it was an emotional blur for me too, though I didn’t need a BMT, only chemo.

Hopefully the treatment will not be too bad. Just take it a week at a time, and eat whenever you feel you can.