Another Leukaemia Update

Well it’s been nearly a year since my chronic Leukaemia diagnosis and 7 months since my Acute Leukaemia Diagnosis, well what a year it’s been. I think saying it’s been a physical and emotional rollercoaster ride is an understatement! My last update was a few months back now and quite a lot has changed. So I thought I’d do an update, I think at the last update I’d had my second round of chemo which went pretty well bar quite a bit of sickness but no complications or infections which are common and I was on my way home for a short break before transplant.

Well the break turned out to be longer than expected, and full of unexpected complications and admissions unfortunately. First complication came when we found out the Leukaemia had spread to my Brain/Spinal which is a a bit of safe haven (CNS Central Nervous System disease), it’d been clear at the previous tests so that was a big setback as it make it makes the leukaemia harder to fight and delays transplant as that needs to be in remission first. So I had a few extra Lumbar punctures with Intrathecal Chemo doses in there. I had a week or horrible headaches from the first which left me pretty much bed\sofa bound basically unless I was horizontal I had unbearable headaches. Managed to get on top of the pain with regular morphine and steroids, which was ok. I managed to go to a couple of really good friends wedding which was amazing as we weren’t expecting me to be able to go, one of the best days I’ve had all year. I’d had an LP the day before too so to be feeling so good and mobile for the day was a great relief, I had a short afternoon nap but other than that was there the whole day and evening, which was amazing!

The next day we drove home and in the evening I had a bit of a headache come on so went to bed about 7ish hoping to sleep it off. I woke up about an hour later in terrible pain with a temp of 39. Neighbours were amazing coming round to babysit at a few minutes notice before the grandparents could get there, as my wife rushed me into hospital straight to the Leukaemia ward where they had a room set up ready with blood cultures etc ready to go, XRays and CT scan etc done that night. I lost several days really didn’t really have a clue what went on bar a horrible lumbar puncture I barely opened my eyes bar for regular neuro’ ob’s I could barely move my head and was incredibly photo sensitive. My wife barely left my side for a few days sleeping (mainly not) in an arm chair in my room for the first night. They’d told her the first night but the suspicion was meningitis. So I was on 3-4 drips at a time pretty much 24 hours a day for 4-5 days hitting me with everything they could to be sure. In the end they were not required as it was Chemical Meningitis which was a reaction to one of the chemotherapy drugs put into my spinal/brain fluid. Now that was a rough week! after about 3/4 days I was coherent and improving and by the end of the week I was allowed home again with a good amount of morphine though, but home.

So back on track we thought had a week or so of outpatient stuff. then all of a sudden out of the blue I couldn’t feel my arse! a bit odd, I mentioned it to the new registrar when i was in the following morning for a bone marrow biopsy who didn’t seem overly fussed. Next day I was in for another LP and chemo dose. Senior Reg basically said lie down don’t move we’re admitting you now for and MRI. Great! I get stuck on a horrible ward at no notice to get an MRI in the morning. I’d driven in myself and had the clothes on my back. so call to get somebody to drop my wife in to pick up the car and drop some things in. I had the MRI and waited all day for an answer. basically a bulging disc below the LP so not directly related but could be a chemo reaction or CNS related. numb half and arse was annoying but very altered bowels was not so good. Thankfully that’s pretty much sorted itself out with the aid of steroids. still got a numb patch on my left cheek but bowels work again thankfully! sorry if that’s too much detail.

So back on track again, another week or so and another LP planned last one was clear of CNS and they needed 2 to proceed with transplant. turned up for next LP and my platelets had crashed to about 5 they need to be 50 for an LP, 10-20 for you to be safe ish to be out of the hospital and normal is 150-400 ish. I’ve had a lot of struggles with platelets, a lot of the drugs really seem to clobber mine. So I got re-admitted again pumped full of platelets for a few days, LP done, oral chemo dose reduced and sent home, then back in again as they crashed again, then back out.

Good News the LP was clear! so transplant was back on the cards!

Then a few days later I woke up from an afternoon nap and half my face didn’t work properly, it came back a few hours later but then settled in as permanent thing, So I was back in again! a bell’s palsy, the question was and is why, CNS or the re-activation of a virus on the 7th nerve. The Dr’s can’t be sure I was tested for everything but cultures and MRI’s were all inconclusive. so I’ve been treated for both with strong IV antivirals and a course or radiotherapy to by brain. A week into that treatment the Dr’s came round and gave us more bad news my acute Leukaemia was out of remission which was the biggest setback of all. After the last month it really hit us hard worse than all of the other set backs. It took us a week to really come to terms with it and crack on with the fight. probably the hardest week of the whole year I think, physically I was ok at the time but mentally my wife and I just didn’t cope at all that week, we turned the corner eventually but it was the hardest week so far.

So a new plan! another round of chemo, different stuff from before then on to transplant. Well the unplanned round three is just about done, and I’m hoping to get home in the next few days for 1-2 weeks break, I’ll be in here most days as usual for platelets, blood etc. but I’ll be able to see my son again which I can’t wait for. Then back in for a few weeks of chemo, a week of Total body irradiation followed by a stem cell transplant from my brother. Bone marrow biopsy done yesterday, fingers crossed for remission, then 2x LP’s in the next few weeks, with everything crossed that they’re clear, if they’re not more delays. but we’re hoping for good news, we’re certainly due some I think.

Not seeing my son as ever is the hardest part, skype is brilliant but it’s not the same. I did manage to see him for an hour in a relatives room here the day before his birthday which was good. My wife and friends and family have been amazing visiting lots and supporting my wife babysitting etc so she can visit most days.

We had a bit of a panic last week too when the government’s’ Cancer Drug Fund review happened. My new inpatient IV chemo drug (Clofarabine) and my daily oral chemo which I may well need for the rest of my life (Dasatinib) were both on the list to be dropped. My consultant confirmed that I’d be able to continue to get them as they’d already been prescribed and used and they won’t take them from existing patients. Not good news for future patient though. The CDF documents refer to only 3 patients being prescribed the Dasatinib in the first quarter of the year due to adverse reactions to the most common TKI Glivec, I was one of that 3. Much of the document talks of using both to extend life too whereas I’m still on a path to hopefully be cured, so it may have been different anyway. Reality is we might still only be buying years but they’ll be incredibly valuable to me, my son is only 3 at the moment, any time I can buy will be so valuable. Official odds for a complete cure are shite (<30%) but were just ignoring those and are feeling positive about it all and are just concentrating on getting cured and moving on with life.

The last couple of weeks my wife and I have been feeling the most positive we have in a long time, I’ve been pretty comfortable and settled in here this time and have kept myself busy with paperwork and odds and ends, and bar an annoying cough I’ve been well. Just having a clear plan is such a good feeling, my radiotherapy is book and the transplant team are all getting geared up. Fingers crossed I’ll be home for Christmas and on the road to a full recovery.

As soon as I’m better and able to I’ll probably post up to bother you all or some charity endeavours, no idea what yet, or which charity tbh could be Bloodwise, Macmillan, Blood Service or Anthony Nolan all of them have been brilliant.

I know that’s a bit of a long old post so thanks if you stuck with it.

People like you amaze me, I’ve no idea how I would find the strength to cope.

Can do nothing more than wish you all the best.

Mate sound like you have been kicked all about the place, stick with it and good luck have my fingers firmly crossed for you.

Between you and Bullheart STW has some inspirational people

Shit, you’ve had a rough time.

I hope the next few weeks and months goes as planned and that the transplant is successful. Glad you’ll be able to be with your son again soon – I think not hugging mine at that age would have been awful. And well done to Mrs29erKeith for coping, I’m not sure I would.

Thanks for the update – I doubt we’ve met but some people’s stories on here stick with me and it’s good to hear how you are doing.

Well, any problems I might think I have fade into insignificance.

In awe of you, Keith, keep up the good work.

Your story made me feel so humbled; my diagnosis pales in comparison. Stick with it and properly beat it!

It’s a sad thing when they drop funding for cancer treatment, which I’m assuming is a ‘simple’ matter of finance.

But good luck, man. I hope you maintain that strength to keep fighting it every step of the way.

**** cancer!

Brilliant work Keith lad. You’ve got fighting spirit and strength. Keep up the fight!!!

I have nothing but massive respect for you and everyone involved! Well done, keep it up and kick its arse.

Stick with it – an inspiring story. Always feel humbled when I read something like that.

Glad to hear that you’re not giving in to this. Keep at it!

Glad to hear that you can be positive, I guess it’s the only way you can get through it.

I hope everything goes according to plan for you, stay strong, you can beat it! 🙂

Thanks for taking the time to give us an update, although I was astonished to read what you have been through. All credit to yourself, your missus and your son for keeping it together. I’ll be giving my kids an extra hug when I get home tonight. I hope that doesn’t come across as insensitive, what I mean is that it’s easy to not appreciate these things when you have easy access to them. Hopefully you’ll be hugging yours soon.

<Dusty office>

WOW! That sounds like a lot to cope with. As above, I don’t know how people in your situation can be so strong!

I hope things keep going in the right direction & the setbacks become fewer. Best Wishes.

Best of luck mate.

ononeorange – Member
In awe of you, Keith, keep up the good work.

Your story made me feel so humbled; my diagnosis pales in comparison. Stick with it and properly beat it!

ditto. thoughts are with you.

your positive outlook has moved me to crying like a baby…

positive thoughts etc to you

Cheers guys, I still don’t know about the inspirational/awe type comments. I’m just a regular guy with Shite luck. I suppose you just have to deal with what life throws at you. I just know now how unfair life can be to the extreme. This kind of thing certainly does make you think about life and what is and isn’t important. Not that I was a work all the hours god sends type of person before anyway. You certainly realise what and who is important to you. I think in the same situation most people would surprise themselves.

Coping! well some days you just just don’t, those setbacks really do hit you hard, but you just have to make a new plan and crack on with it and we’re in a good place right now.

I’m just sat around most of the time and much of my time in here I feel ok, a bit under the weather others and properly ill at others, but most of the time it’s waiting for marrow and bloods to recover and trying to stay well and infection free. Its just boring!

My wife on the other hand, is trying to work (reduced hours thankfully) look after our lad, keep the house/garden up together and visit me nearly everyday. Friends and Family have been amazing looking after him and helping out a lot, so she can get here regularly. We’re so lucky to live close (20-30mins drive). The ward I’m on in Southampton covers a huge geographical area. There are patients here from miles away even Jersey and Guernsey. It must be so much harder for them not having pretty regular visitor like I get. Patients rarely meet but the Nurses are great.

The CDF thing yeah is primarily a financial decision which is very frustrating. Yeah I know budgets are tight but what frustrates me the most is there’s a massive percentage of the NHS budget which goes on completely preventable/self inflicted conditions, not all cases I know, but a lot of the following: Diabeaties, heart, lung liver and some cancers from lifestyle choices Diet, Smoking, inactivity. Having always been a fairly health guy and getting a very serious illness which I could have done nothing about and to have care compromised because of funding its very bitter pill to swallow. Typing this looking out of my bedroom window is a bus stop full of overweight patients on gowns and PJs some in wheelchairs with drips all smoking away 😥 it will be like that all day! While the people actually waiting for a bus, old young and also ill are scattered about avoiding the cloud. oh and theres an actual smoking shelter 20-30meters away 🙁

The solutions aren’t easy or quick and I’m not proposing just cutting people off, but this ward and many other cancer care wards could easily use twice as many beds and I know I’ve been delayed at times coming back because of availability. I would never knock the treatment I’ve received here because it’s been brilliant but I know the consultants could do better/more with more resources. Diabetes is the single largest budget in the NHS and climbing quickly. My father in law is a prime example, 25 stone, getting dressed brushing his teeth and walking to the car is about as much exercise as he gets each day. He’s now diabetic, problems with his teeth, his eyes, and his feet. lots of help offered he knows he has to change or know the consequences. Has he lost any weight in the last few years, nope out at the pub and scoffing massive curry’s regularly grrrrr and the NHS just keep patching him throwing good money after bad. There has to be a point when people have to take responsibility for themselves.

I wonder if properly linking funding would be an idea e.g. smoking, alcohol and potential sugar/Fat Taxes linked and ring-fenced specifically for the affects of them.

I know we as cyclists never really wanted that with VED which Osborne has sort of brought back but I don’t know if it might add some personally responsibility… probably not! my FIL will never change imo. I so want to shout at him some days, “Do you not want to see your grandchildren grow up, do something about it” he loves his grandchildren but is absolutely resigned to dying early, like his father did. He’s cashed in every financial provision he ever had for a retirement and is busy spending it (Cars, holidays and supporting his income now) because he “knows” he’s never going to get retirement. That’s how bad he is. A self for-filling prophecy, even sadder thing is his wife probably will and there will be bugger all left for her to live off bar state provisions 😥

anyway thats a whole other argument which has no doubt been covered on here

Just got today’s blood results and they’ve climbed again neutrophils were 0.3 yesterday and 0.4 today. 0.5 means home time!!!!! So tomorrow or Sunday I should be home, which means I can swap this view

for this 8)

As relatively comfortable as this ward is as far as hospitals go, each having our own en-suit private rooms and all, and for months at a time. Its not home with your family.

That 2nd pic is great.

The first, not so great.

Hope you get home soon…

The first, not so great.

Aye, you have really big, big toes!!

Keep being a tough bugger fella. Life throws some real curve balls and you just have to deal with them.

All the very best mate.

Best of luck.

They say cancer is a marathon – well it seems your doing an ultra! typical 😉

Just got today’s blood results and they’ve climbed again neutrophils were 0.3 yesterday and 0.4 today. 0.5 means home time!!!!!

my maths ain’t great but it looks like you’ll be in the tree house before next week!

Glad to hear you’re on the mend again. 😀

Consultant has just been in and confirmed I should be out Sunday! 🙂

Great news! Nothing like what you’re dealing with but after a tropical disease I had the daily wait on the bloods, immune system shot etc. All you want is to be home.
Keep it going!

Keith, I’ve just finished going back through your posts on this and I appear to be leaking a bit. All the best to you and your family.

I barely had the spirit and strength to read through that let alone actually fight the thing. Massive hug to you and your family. I look forward to a thread title of “Disease hoofed in the slats!).
Stay strong and stay well.

I’ve cried more this year than my entire life, and I’m I right soft git at the best of times.

tbh its happened more often talking/thinking about my brother being a match and donating me his stem cells and all of the amazing things friends have said and done to help us along the way and knowing how much they really do care and would do whatever they can to help.

That reminds me I have 2 weeks now to execute my kill list, so if your on the list beware 😉
After my transplant my DNA and blood group will change so I should be recrimination free 😆

really odd to think my DNA will cease to exist and my brothers DNA should overtake mine and I’ll become AB blood group from O, Weird!

Keith are you taking commissions, or just working back through the things/people that annoy you?

Good luck with it all and keep bothering us.

I’d conceder a commission for the right price 😉
email in profile 😆

bloody hell. what an absolutely mind bending post, how do you cope? You seem to have incredible clarity and focus on what you want to achieve. I think I’ll knock off work early and go play superman in the garden with the boy.

Good luck with your battle and I hope you win the war! My daughter was diagnosed with <5% survival chance 21 years ago, she got married last weekend…….. Think it’s getting dusty in here too….. 😉

Keith, all the best for the future. You just reminded me to send the wife and kids a quick text to tell them I’m thinking of them.

I’d conceder a commission for the right price
email in profile

Well that’s a turn up for the books, saves me having to place a “Wanted – Hit Man” ad. do I get to choose the method? 8)

Best of luck to you mate, you’re an inspiration.

Suggsey that must have been an incredible day. Made all the more special knowing how things could have been different. If it weren’t for her treatment and all or your wills to beat it.

That’s exactly the type of thing that really helps, it’s great to hear those success stories. Wanting to see my son grow up is my biggest motivator. I can’t imagine not being there for him. Being able to see and be part of all those big milestones in his life.

Almost moved to tears here by your fortitude and pluck. All the very best Keith – rooting for you!

Jay

I just read this thread from top to bottom. As tough as the first post was the latter ones feel even more uplifting. I’d say your attitude is anything but average guy. Thanks for sharing and keep us updated

Bugger me.. Ive just read this thread & I have to say I really don’t know how you can keep going, you are fekkin’ superhuman mate!

Giving up is just not an option.
Nobody here has ever presented it as an option either as hard as the road ahead is. I don’t think anyone in a similar situation would give up either. At 60+ the options are very different but at my age they can throw the lot at me, transplant is going to be rough but they really are throwing the lot at me to give me the best odds and I’ll do them justice giving it all I have to make it work.

It was an emotional day, but you have the right attitude, I really am a firm believer in the right attitude and fighting helps create survivors. As you put giving up is not an option! Don’t forget your daily broccoli, carrots, breast of chicken and apricots or similar for pudding….my daughter ate this once a day every day for the year she was on treatment…..whilst other kids parents relented and fed them Mc Donald’s…….
Have a great break back at home 🙂