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JohnM

Health update.

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7 hours ago, Lounge Room Lizard said:

Things not great at Moment.  We stopped the Therapy due my low blood count. My HB is between 7 and 8 since months and Red and White platelets are dangerously low. I risk bleeding to death very quickly as blood does not clot. Have to take something to help prevent this happening. I need blood every week.Its worrying, but hope the Bone Marrow Biopsy on monday gives some answers. The likely answer is bone marrow is blocked by cancer cells or damaged. Possible solution high Dosage Chemo followed by stem cells from me and my Sister. She is a 100% match! I am very frightened.

Right, well if we had a competition going on here then you’ve just won.

Hopefully, you’ll get some answers soon and things begin to improve. It sounds like it’s going to be a long journey whatever so know that we’re all on it with you. If you want to, keep us up to date with how things are going.


Build a man a fire, and he'll be warm for a day. Set a man on fire, and he'll be warm for the rest of his life. (Terry Pratchett)

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7 hours ago, JohnM said:

For once, I just don't know what to say. There are not the words.  Just this, possibly.  Whatever our differences, I'm sure the whole of the forum is wishing you the best. If you want to sound off and rant without  upsetting those near and dear to you, you can always PM me ( and others, I'm sure) to vent your feelings in complete confidence.

John captures it in a nutshell, I’ve found just letting off steam on here in pseudo-anonymity to be fantastic at times.  The things you can’t say, or don’t know how to say, to family are often easier aired or rehearsed in anonymity.

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“Travel is fatal to prejudice, bigotry, and narrow-mindedness, and many of our people need it sorely on these accounts. Broad, wholesome, charitable views of men and things cannot be acquired by vegetating in one little corner of the earth all one's lifetime" - Mark Twain

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Been in Hospital in the UKE Hamburg since Wednesday week. But things looking good with the new hemo etc and hope to be home on Wednesday. Feel very positive and the plan is to get the Cancer as low as possible and have a Stem Cell from me and my sister (100% match!!) match. Its a risky one is the old Stem Cell game, but if it gives me a chance to live a bit longer then you take such moments! Likely means spending a few more months in Hospital later as the big Chemo will kill ALL Cells etc and the immune system will be back to ZERO!!! My body then has to accept my sisters stem cells which it may not do! The Cancer will come back at some stage as its incurable sadly.

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26 minutes ago, Lounge Room Lizard said:

Been in Hospital in the UKE Hamburg since Wednesday week. But things looking good with the new hemo etc and hope to be home on Wednesday. Feel very positive and the plan is to get the Cancer as low as possible and have a Stem Cell from me and my sister (100% match!!) match. Its a risky one is the old Stem Cell game, but if it gives me a chance to live a bit longer then you take such moments! Likely means spending a few more months in Hospital later as the big Chemo will kill ALL Cells etc and the immune system will be back to ZERO!!! My body then has to accept my sisters stem cells which it may not do! The Cancer will come back at some stage as its incurable sadly.

Best of wishes for a good outcome with that.  Make sure the hospital has a Sky Sports subscription or you can at least get a Sky Go login from family!


“Travel is fatal to prejudice, bigotry, and narrow-mindedness, and many of our people need it sorely on these accounts. Broad, wholesome, charitable views of men and things cannot be acquired by vegetating in one little corner of the earth all one's lifetime" - Mark Twain

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Good luck with the chemo and stem cell, LRL! Hoping for a positive outcome for you.

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Rethymno Rugby League Appreciation Society

Founder (and, so far, only) member.

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17 minutes ago, ckn said:

Best of wishes for a good outcome with that.  Make sure the hospital has a Sky Sports subscription or you can at least get a Sky Go login from family!

I have watchnrl.com so can watch all games and shows. Its better than watching normal TV!!!

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7 hours ago, Lounge Room Lizard said:

I have watchnrl.com so can watch all games and shows. Its better than watching normal TV!!!

Hope it all goes well mate...funnily enough Im seeing my Oncologist Mon for the dreaded quarterly scan results! You would of thought after 3 years it would get easier, but it still stresses me out big time!

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7 hours ago, Lounge Room Lizard said:

I have watchnrl.com so can watch all games and shows. Its better than watching normal TV!!!

Good luck mate, thoughts are with you. Had a cousin go through a very similar thing. 

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On 08/06/2019 at 13:26, Gray1967 said:

Hope it all goes well mate...funnily enough Im seeing my Oncologist Mon for the dreaded quarterly scan results! You would of thought after 3 years it would get easier, but it still stresses me out big time!

Well that went well..!!! After 3 years of being cancer free, turns out the ###### is on my lungs now! More hardcore chemo awaits...oh the joys!

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5 hours ago, Gray1967 said:

Well that went well..!!! After 3 years of being cancer free, turns out the ###### is on my lungs now! More hardcore chemo awaits...oh the joys!

Sorry to hear that 


"You clearly have never met Bob8 then, he's like a veritable Bryan Ferry of RL." - Johnoco 19 Jul 2014

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6 hours ago, Gray1967 said:

Well that went well..!!! After 3 years of being cancer free, turns out the ###### is on my lungs now! More hardcore chemo awaits...oh the joys!

Not good news. Stay strong. Stay positive. Good luck.


Rethymno Rugby League Appreciation Society

Founder (and, so far, only) member.

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On 08/06/2019 at 05:15, Lounge Room Lizard said:

Been in Hospital in the UKE Hamburg since Wednesday week. But things looking good with the new hemo etc and hope to be home on Wednesday. Feel very positive and the plan is to get the Cancer as low as possible and have a Stem Cell from me and my sister (100% match!!) match. Its a risky one is the old Stem Cell game, but if it gives me a chance to live a bit longer then you take such moments! Likely means spending a few more months in Hospital later as the big Chemo will kill ALL Cells etc and the immune system will be back to ZERO!!! My body then has to accept my sisters stem cells which it may not do! The Cancer will come back at some stage as its incurable sadly.

I trust that it goes well. This sort of stuff really impacts your confidence. I'm sure the whole of the forum is behind you, wishing you the very best. 


Four legs good - two legs bad

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1 minute ago, JohnM said:

I trust that it goes well. This sort of stuff really impacts your confidence. I'm sure the whole of the forum is behind you, wishing you the very best. 

I am lucky to be under the German Health System-simply fantastic and even get all my Taxi trips to/from hospital paid for etc. I am also so lucky through our wonderful Sport to have met many people around the World. I have hundreds of messages of support from such great people around the World. Facebook is great to keep people informed and also receive the messages which help in this fight. My Cancer is incurable but I think half the battle is the mental side. Keep Fighting and Keep Positive.

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13 hours ago, Gray1967 said:

Well that went well..!!! After 3 years of being cancer free, turns out the ###### is on my lungs now! More hardcore chemo awaits...oh the joys!

Don't be a stranger, keep us up to date with how things are going.

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Build a man a fire, and he'll be warm for a day. Set a man on fire, and he'll be warm for the rest of his life. (Terry Pratchett)

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12 minutes ago, gingerjon said:

Don't be a stranger, keep us up to date with how things are going.

Will do and thanks everybody. Basicaly Oncologist has signed me off for more chemo, will be fortnightly(the joys) and now its just a case of waiting for a date to start...actualy said there is no rush and could actualy leave it for another 2-3 months, wouldnt cause me any extra harm. Didnt really have any side effects last time, so hoping it is the same this time around. If there is anything positive, it is that I was having regular scans so they have caught it early, there is about 4 small spots on the lungs and my Oncologist was pretty upbeat about the chemo doing its job...he said" youve been 3 years cancer free, so theres no reason it cant be another 3 years"

Was feeling quite positive yesterday after I got the news, but think its actualy hit home today. Will feel better when the treatment starts.

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On 08/06/2019 at 05:15, Lounge Room Lizard said:

Been in Hospital in the UKE Hamburg since Wednesday week. But things looking good with the new hemo etc and hope to be home on Wednesday. Feel very positive and the plan is to get the Cancer as low as possible and have a Stem Cell from me and my sister (100% match!!) match. Its a risky one is the old Stem Cell game, but if it gives me a chance to live a bit longer then you take such moments! Likely means spending a few more months in Hospital later as the big Chemo will kill ALL Cells etc and the immune system will be back to ZERO!!! My body then has to accept my sisters stem cells which it may not do! The Cancer will come back at some stage as its incurable sadly.

My bets wishes to you. 

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UKE HAMBURG rang yesterday. Want me in Thursday for another 3 weeks for New treatment and development I think. My head is spinning and am scared so got about 50% of what said.

My wife and 3 year old dazghter come back from there 3 week Rehab today. The hospital will Ring my wife and go through with her whats happening later today.

Normally I am strong and can handle the negatives but at mo this has weakened. My wife again faces a 2.5 hr round trip to visit me. I feel angry to put her under this problems AGAIN. I feel such a burden to her and others.The mental battle with Cancer is probably for me harder than the physical many times. Its important to stay positive and focused but so %=÷%$% hard to do all the time. 

I know I must find the strength to get back to being focused and being strong not just for me but my wife too. Just lucky to have duch a great partner and not have to face this alone.....

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3 hours ago, Lounge Room Lizard said:

UKE HAMBURG rang yesterday. Want me in Thursday for another 3 weeks for New treatment and development I think. My head is spinning and am scared so got about 50% of what said.

My wife and 3 year old dazghter come back from there 3 week Rehab today. The hospital will Ring my wife and go through with her whats happening later today.

Normally I am strong and can handle the negatives but at mo this has weakened. My wife again faces a 2.5 hr round trip to visit me. I feel angry to put her under this problems AGAIN. I feel such a burden to her and others.The mental battle with Cancer is probably for me harder than the physical many times. Its important to stay positive and focused but so %=÷%$% hard to do all the time. 

I know I must find the strength to get back to being focused and being strong not just for me but my wife too. Just lucky to have duch a great partner and not have to face this alone.....

Are you able to access any of the support of people like Macmillan? They make a huge difference to how people face cancer and its impact.


Build a man a fire, and he'll be warm for a day. Set a man on fire, and he'll be warm for the rest of his life. (Terry Pratchett)

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Just my little 2p worth

My mother in law was ill in 1993 in lead up to my wedding - after many mis and missed diagnosis she was found to have advanced bowel cancer - it was removed and she was on a bag for 2 years which was then removed, after 11 years (2004) she developed another primary bowel cancer which luckily presented with standard symptoms so was whipped out early and she was clear again, she has just been diagnosed with Lymphoma and starts chemo in a few weeks. The thing is she was told in 1993 she was 50/50 on making it to the 5 yr point - instead she has survived (in many ways thrived) watched her younger daughter and son marry, 6 grandchildren be born, 3 others go through university and one of them marry.

Keep fighting

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4 hours ago, Lounge Room Lizard said:

UKE HAMBURG rang yesterday. Want me in Thursday for another 3 weeks for New treatment and development I think. My head is spinning and am scared so got about 50% of what said.

My wife and 3 year old dazghter come back from there 3 week Rehab today. The hospital will Ring my wife and go through with her whats happening later today.

Normally I am strong and can handle the negatives but at mo this has weakened. My wife again faces a 2.5 hr round trip to visit me. I feel angry to put her under this problems AGAIN. I feel such a burden to her and others.The mental battle with Cancer is probably for me harder than the physical many times. Its important to stay positive and focused but so %=÷%$% hard to do all the time. 

I know I must find the strength to get back to being focused and being strong not just for me but my wife too. Just lucky to have duch a great partner and not have to face this alone.....

We are rooting for you Si.

I hope things go the best they can.

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A bit lost for words reading this thread - never met any of the posters who are discussing their own specific battles yet feel like they're  friends - stay strong everyone

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Now then, it's a race between Sandie....and Fairburn....and the little man is in........yeees he's in.

I, just like those Castleford supporters felt that the ball should have gone to David Plange but he put the bit betwen his teeth...and it was a try

Kevin Ward - best player I have ever seen

DSC04156_edited-1_thumb.jpg

The real Mick Gledhill is what you see on here, a Bradford fan ........, but deep down knows that Bradford are just not good enough to challenge the likes of Leeds & St Helens.

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9 hours ago, gingerjon said:

Are you able to access any of the support of people like Macmillan? They make a huge difference to how people face cancer and its impact.

We dont have anything like MacMillan in Germany. I do have contact with Myeloma UK even though I live and receive all treatment in Germany - which lucky for me offers more medication and less Stress than sadly UK citizens get.

After my wife chatted to Doc they want to see how I go with much higher Chemo and higher Dosage of what I am taking plus 4 NEW meds. This could see me Halluzinationen the first cycle that will last 4 days! The 3 weeks is also to see how I respond in this time. They expect some tough days they said So my panic attack is way OTT and we hope a positive outcome with Stem Cell Treatment at end wi my Sister.

Thanks everybody and know others have health problem. We are wi each other in thought if nothing else.

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24 minutes ago, Lounge Room Lizard said:

We dont have anything like MacMillan in Germany. I do have contact with Myeloma UK even though I live and receive all treatment in Germany - which lucky for me offers more medication and less Stress than sadly UK citizens get.

After my wife chatted to Doc they want to see how I go with much higher Chemo and higher Dosage of what I am taking plus 4 NEW meds. This could see me Halluzinationen the first cycle that will last 4 days! The 3 weeks is also to see how I respond in this time. They expect some tough days they said So my panic attack is way OTT and we hope a positive outcome with Stem Cell Treatment at end wi my Sister.

Thanks everybody and know others have health problem. We are wi each other in thought if nothing else.

Pleased to hear you’re getting some support. Keep on keeping on mate, it’s the only way.

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Build a man a fire, and he'll be warm for a day. Set a man on fire, and he'll be warm for the rest of his life. (Terry Pratchett)

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One big issue here is fear. Thankfully I am continuing to recover but still a way to go. I still recall the fear I felt on emerging from the anaesthetic, partially hearing the medics talking about me, thinking it had all gone wrong and I would not recover.

Apparently I was getting quite agitated because I was scared shirtless.

Still an element of fear that even now, four months later, I occasionally think there are things that they are not telling me. Might be the combined effects of the 7 different meds I'm on, though. 

For cancer sufferers, I'm sure the fear and uncertainty is much worse and its to be wished and hoped that this fear does not eat away at them. 

Despite the robustly expressed differences of opinion on here on other topics, I'm sure we are united in this issue. Our  relative anonymity should leave sufferers free to express their fears freely. It might just help a bit. 

 

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Four legs good - two legs bad

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