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On 07/12/2019 at 08:11, Dave T said:

In the 40s. Before the procedure it was around 80 and that was on beta blockers. They have halved my dose so hopefully it'll settle, or maybe the beta blockers aren't needed any more. 

They seemed OK with it once the doc had been, but I'm gonna monitor it now on this lower dosage. Still on blood thinners too. 

Thanks mate. 

Mine dropped to around 42 following the cardioversion, the cardiac team had kept me on beta blockers at half the dose I’d been on before. After a week or so this got halved again and then dropped completely. Now sitting at low 50s as a Resting heart rate

 

 

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47 minutes ago, Shadow said:

Mine dropped to around 42 following the cardioversion, the cardiac team had kept me on beta blockers at half the dose I’d been on before. After a week or so this got halved again and then dropped completely. Now sitting at low 50s as a Resting heart rate

 

 

Mine seems to have settled at 52 and on half the dose too. I haven't got an appointment with the cardiologist for a few weeks, do you think I should be pushing for a GP appointment to review in the meantime, they didn't seem too concerned when they were letting me leave the hospital? 

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Learning to live with permanent AF is one hell of a problem. It seems that of your heart rate is too low, you are in danger of fluid build up in lungs and feet as your circulation is not enough to keep everything on track. I've not been offered cadioversion, etc as at my age, it's likely to be less than 50% effective. During my mitral valve replacement op, they tram was due to burn out certain nerves in my heart to try to correct the AF but they ran out of time after almost 9 hours in theatre. The AF is currently within the range that can be treated with drugs. All BP measurements have to be taken manually as auto machines can't cope with A'F pulse irregularity. 

Four legs good - two legs bad

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  • 2 weeks later...

I've been waiting for good news before posting this publicly.

My wife had surgery to remove a cancerous lump from her breast on Tuesday. The surgery went well and she was released from Heraklion hospital yesterday evening. She is sitting opposite me in our local taverna, drinking wine and waiting for our meal.

First signs are very positive, surgeon is very happy with the procedure and the first post-op meeting with said surgeon is on Sunday. I am happy.☺

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Rethymno Rugby League Appreciation Society

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1 hour ago, JohnM said:

Excellent news. 

(For some reason, though, I don't seem to have the facility to react to posts any more. That seems to have disappeared.)

Fixed that for you...

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"When in deadly danger, when beset by doubt; run in little circles, wave your arms and shout"

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4 hours ago, tonyXIII said:

I've been waiting for good news before posting this publicly.

My wife had surgery to remove a cancerous lump from her breast on Tuesday. The surgery went well and she was released from Heraklion hospital yesterday evening. She is sitting opposite me in our local taverna, drinking wine and waiting for our meal.

First signs are very positive, surgeon is very happy with the procedure and the first post-op meeting with said surgeon is on Sunday. I am happy.☺

Well, hooray!

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

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17 hours ago, tonyXIII said:

I've been waiting for good news before posting this publicly.

My wife had surgery to remove a cancerous lump from her breast on Tuesday. The surgery went well and she was released from Heraklion hospital yesterday evening. She is sitting opposite me in our local taverna, drinking wine and waiting for our meal.

First signs are very positive, surgeon is very happy with the procedure and the first post-op meeting with said surgeon is on Sunday. I am happy.☺

Very pleased for you, great news.

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  • 4 weeks later...

Glad to see the back of 2019. I spent around 37 weeks in Hospital for one reason or another (Stem cell treatment, Chemo, roblem with the lungs, low blood results (Thrombozyten, Leukozyten and HB) etc). Still am here and feel OK considering.

I had Stem Cell treatment to try and repair some damage to my Bone Marrow in November. This looks to have worked to some degree but my Thrombozyten after rising to 94K are dropping again and at mo around 50K. My HB is around 11-which is the highest its been in 18 months!

I hope to take a new anti-body this week and then every 3 weeks in future. Hopes are high this new medication gives many patients a good remission time. So I am feeling good and positive , as well as a bit frightened, as my blood levels are not the best and why I cant often get on a "Study" with new meds.

I feel so useless and angry at myself at times for ruining or making life so hard for my wife and daughter as well as other family members. They just drop everything so often for me when I end up in Hospital etc. I feel so guilty that sometimes I physically cant do much as am so tired or my back with 5 ermanent fractures, means I cant use a vac, cut the grass etc due to putting pressure on back and possibly risk more damage. I just feel like a burden. I think mentally having an incurable disease like Myeloma is tougher than the physical battle. Least I can still walk the dog and fill/empty dishwasher etc. And I have a much better life than many others. Life is tough, but there are others like Rob Burrow, who have it harder and whi I get much inspiration from. I feel 2020 will be a better year for me . Very lucky to have great family and friends around the world for support. Many dont have that.

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  • 1 month later...

I have been told am on the Last line of therapy and on 28th February have Meeting in Hamburg on where we go. The reality is that I have maybe around a year to live. But there are cases of people living years with no therapy. Maybe I have some luck. I will keep on fighting as best I can.I am so angry and hurt and the hardest thing is how to tell our 4 year old daughter. Its so cruel on her. I have built up a gallery on my E Book of Photos and videos so she can have atleast some memories of me. I dont leieve in Heaven and Hell and certainly not in any god.

Naturally in shock and cried. Very hard,to understand or get my head around. I dont expect anything from people and there is nothing to say really. Thanks for your support over the past and also in future times.

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5 hours ago, Lounge Room Lizard said:

I have been told am on the Last line of therapy and on 28th February have Meeting in Hamburg on where we go. The reality is that I have maybe around a year to live. But there are cases of people living years with no therapy. Maybe I have some luck. I will keep on fighting as best I can.I am so angry and hurt and the hardest thing is how to tell our 4 year old daughter. Its so cruel on her. I have built up a gallery on my E Book of Photos and videos so she can have atleast some memories of me. I dont leieve in Heaven and Hell and certainly not in any god.

Naturally in shock and cried. Very hard,to understand or get my head around. I dont expect anything from people and there is nothing to say really. Thanks for your support over the past and also in future times.

Mate, whatever any of us can realistically do, I'm sure we're all on hand to do it. Let us know what is said and decided at your meeting on the 28th.

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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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8 hours ago, Lounge Room Lizard said:

I have been told am on the Last line of therapy and on 28th February have Meeting in Hamburg on where we go. The reality is that I have maybe around a year to live. But there are cases of people living years with no therapy. Maybe I have some luck. I will keep on fighting as best I can.I am so angry and hurt and the hardest thing is how to tell our 4 year old daughter. Its so cruel on her. I have built up a gallery on my E Book of Photos and videos so she can have atleast some memories of me. I dont leieve in Heaven and Hell and certainly not in any god.

Naturally in shock and cried. Very hard,to understand or get my head around. I dont expect anything from people and there is nothing to say really. Thanks for your support over the past and also in future times.

So sorry to hear that. Life can kick us in the guts and kick us again and again...........

Let us know how you are getting on.

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On 12/01/2020 at 22:43, Lounge Room Lizard said:

Glad to see the back of 2019. I spent around 37 weeks in Hospital for one reason or another (Stem cell treatment, Chemo, roblem with the lungs, low blood results (Thrombozyten, Leukozyten and HB) etc). Still am here and feel OK considering.

I had Stem Cell treatment to try and repair some damage to my Bone Marrow in November. This looks to have worked to some degree but my Thrombozyten after rising to 94K are dropping again and at mo around 50K. My HB is around 11-which is the highest its been in 18 months!

I hope to take a new anti-body this week and then every 3 weeks in future. Hopes are high this new medication gives many patients a good remission time. So I am feeling good and positive , as well as a bit frightened, as my blood levels are not the best and why I cant often get on a "Study" with new meds.

I feel so useless and angry at myself at times for ruining or making life so hard for my wife and daughter as well as other family members. They just drop everything so often for me when I end up in Hospital etc. I feel so guilty that sometimes I physically cant do much as am so tired or my back with 5 ermanent fractures, means I cant use a vac, cut the grass etc due to putting pressure on back and possibly risk more damage. I just feel like a burden. I think mentally having an incurable disease like Myeloma is tougher than the physical battle. Least I can still walk the dog and fill/empty dishwasher etc. And I have a much better life than many others. Life is tough, but there are others like Rob Burrow, who have it harder and whi I get much inspiration from. I feel 2020 will be a better year for me . Very lucky to have great family and friends around the world for support. Many dont have that.

Angry at yourself? Why? You didn't get this ###### deliberately. You are not at fault. Don't blame yourself. In some ways, you are blessed - you have a loving family who are happy to do the heavy lifting for you while you are unable.

I know it's trite, but "Count your blessings." You have a loving wife and a daughter. Keep fighting and if you need to vent, we are here, so scream and shout all you like. Good luck!

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Rethymno Rugby League Appreciation Society

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On 12/01/2020 at 21:43, Lounge Room Lizard said:

Glad to see the back of 2019. I spent around 37 weeks in Hospital for one reason or another (Stem cell treatment, Chemo, roblem with the lungs, low blood results (Thrombozyten, Leukozyten and HB) etc). Still am here and feel OK considering.

I had Stem Cell treatment to try and repair some damage to my Bone Marrow in November. This looks to have worked to some degree but my Thrombozyten after rising to 94K are dropping again and at mo around 50K. My HB is around 11-which is the highest its been in 18 months!

I hope to take a new anti-body this week and then every 3 weeks in future. Hopes are high this new medication gives many patients a good remission time. So I am feeling good and positive , as well as a bit frightened, as my blood levels are not the best and why I cant often get on a "Study" with new meds.

I feel so useless and angry at myself at times for ruining or making life so hard for my wife and daughter as well as other family members. They just drop everything so often for me when I end up in Hospital etc. I feel so guilty that sometimes I physically cant do much as am so tired or my back with 5 ermanent fractures, means I cant use a vac, cut the grass etc due to putting pressure on back and possibly risk more damage. I just feel like a burden. I think mentally having an incurable disease like Myeloma is tougher than the physical battle. Least I can still walk the dog and fill/empty dishwasher etc. And I have a much better life than many others. Life is tough, but there are others like Rob Burrow, who have it harder and whi I get much inspiration from. I feel 2020 will be a better year for me . Very lucky to have great family and friends around the world for support. Many dont have that.

Mate, I could be completely wrong, but my impression is that much of your life has been tough with many people who did not have your best interests at heart. You are very welcome to tell me to F off, but the last few years, you have been lucky enough to have a family who truely, love you and value your happiness. I think they want you to be happy and if you learn to forgive yourself (as in accept rather than ignore), you will help them in that. Because there is nothing to forgive. You are a great Dad, a great husband and a great man. I am lucky to have met you. I hope I get to do so again before too long.

And if we do catch up soon, let's ignore this emotional post and it would be socially awkward ?

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

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  • 3 weeks later...
  • been told no more Chemo or Therapy can help. Cancer cells now in my brain etc so realistically I am looking at a few months to live. Still I will keep on fighting and in a way it helps me and my Family prepare for things. Been putting photos and videos on a Saving device-Festplatte in German but dont know the English word! Sorry. M Rugby League history the Rugby League Deutschland have taken-first ever German playing shirt etc that can be displayed one day for example. Its tough to know you dont have long left, but for me its just made me more determined to enjoy life and make memories especially for my 4 year old daughter-thats the hardest thing knowing I wont watch her grow up.
  • I have been lucky to set up League in Germany in 2005 and see it still going. I have met some great people along the way in the European RL Circuit like Ian Thompson (Yanto), Steve Davy (Bob8) and others like JWAD (Justin Deegan (Ireland RU and Touch), Kevin Rudd, Tony Palacios  (spain RL), Martin Crick (RLEF) etc. The game has brought me so much joy and heartache!
  • Thinking also of a number of others on here with various Health Issues. I hope you are doing OK in the situation. Its been a pleasure to interact on here with you all over the years  and hope to still do for a while yet and hear how you are doing as well as read your views on the game etc.
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If its not too demanding at this time, tell us more about Germany. Hamburg, I think you mentioned.  If you are happy to do so, tell us how and why did you moved there.  and more about the game in Germany. Might help you document things for the future. 

 

Edited by JohnM

Four legs good - two legs bad

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40 minutes ago, JohnM said:

If its not too demanding at this time, tell us more about Germany. Hamburg, I think you mentioned.  If you are happy to do so, tell us how and why did you moved there.  and more about the game in Germany. Might help you document things for the future. 

 

 

40 minutes ago, JohnM said:

If its not too demanding at this time, tell us more about Germany. Hamburg, I think you mentioned.  If you are happy to do so, tell us how and why did you moved there.  and more about the game in Germany. Might help you document things for the future. 

 

Will Try not to bore you but basically the following is what happened to my family and how I moved to Germany

I was born and brought up in Halifax, but my Mum is originally from down South (Dover area)and my Papa from Germany (Family from Hamburg area). My Family were moved from Altona, Hamburg to a place 1 hr South Called Walsrode during the war due to the Bombings. My Oma/Grandma and Opa/Granddad were both in the Luftwaffe in Appen, North of Hamburg during the war. Sadly my Opa/Granddad died in a Bomber plane over France in 1944-the year my Dad was born in Eppendorf Hospital in Hamburg-where I used to get my Chemo/Therapy funny enough! Myy Dad never got to meet his biological Dad-probably like many at this time. I am not sure what my Oma did but here and her Twin sister maybe cooked and cleaned etc on the base which still exists today. Sadly many records in Germany from this time was destroyed by nazis etc so difficult to get much info. I do have some paperwork though from Family as people in Germany had to do Family Records of past to show no Jewish line. So this Negative has helped us piece somethings together about my familyy and here they lived and worked before the war in Altona, Hamburg.

After the war my Oma/Grandma met an English Soldier and moved to Andover, England with my Dad where he was brought up then. My Mum and Dad met in London in the early 70s and moved North due to cheap Housing etc compared to what London had to offer. My Father was born Remstedt, but the English Soldier adopted him and his name changed to Cooper.

My Dad always wanted Germany to win at Football and so we kids just followed and though we ws born in England we all probably felt more German than English. I got a fair amount of stick as well as a Kid with a German background. But I was and still am so proud of my German heritage, despite the "Nazi Time" which has sadly distorted many peoples view of Germans and Germany in my opinion.

It was always my dream to live and move to Germany as I felt that was where my home was. I moved to first Munich in 2002 aged 28 as had friends that got me work. I was lucky and got working first with a Gardener and then moved on to a Job Agency. Job Agency job ended up being a Permanent one with good pay for working in a Warehouse at develey (Well known Bavarian Food Company). I met my wife who was studying to be a Special Needs Teacher for the Deaf and Mentally disabled. She finihed her studies and in  2012, we moved North to near Hamburg, as that was where my wife was from and we basically could not afford to have a family in Munich-Its the most expensive area in Germany! I have both German and British Citizenship-mainly for my daughter so that she may get a UK Pass later in life if she wants. I m also not too far away from my Family that are now back in Hamburg after the war. The House the Family moved to in Walsrode (about 30 Minutes from me) is still there!

I have used connections and used Rugby Union at times to push league and get people playing in Germany first in the South-sadly nobody really wanted the responsibility of developing the sport there after I moved North-plus the German Rugby Union especially in heidelberg caused many problems as usual. Fortunately in the North an Ex Pat in Bob doughton is carrying on the development alongside a couple of others so that rugby League has been played in Germany since 2005. We was alongside the dutch, Serbs and Czechs, one of the first Europpean Nations to develop the Sport with no years where nothing has happened. Its not easy in germany as we areentitled to no Money or Help from the Government and so often have to use our own money of the very small amount we get from the RLEF to do things. ALL players-Heritage of Native pay to play in the Domestic and National teams. Even Jimmy KKeinhorst, Brad Billsborough, Anthony Seibold who are or were Pros paid everything themselves!

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Had some good times (and bad times) together during those early years Si. ?

Remember meeting you for the first time at the wrong entrance to Rotterdam Central Station.. after both of us were sure we were right ?

That stubborness and refusal to give in has kept you going these past few years. 

Worked well together in those early years marra, with nowt but northern grit and I will always remember going into the heartland of German Rugby Union to ref a game for you v a British Army team. 

On the same day as Heidelberg was hosting a Union International... You sure knew how to make your precence felt. 

Following your journey has made me realise how lucky I have been and its made me appriciate life more. 

Enjoy the girls, make a LOT more memories and as you know from Facebook, all your friends family and rugby mates are 100% behind you in this fight. 

Stay strong pal. 

 

 

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  • 3 months later...

Well .... not long came back from my eye check and the different tests all picked up the very early signs of macular degeneration.

I’m mid 40s so it’s quite a shock.

I’m not particularly excited about the idea of slowly going blind.

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2 hours ago, Copa said:

Well .... not long came back from my eye check and the different tests all picked up the very early signs of macular degeneration.

I’m mid 40s so it’s quite a shock.

I’m not particularly excited about the idea of slowly going blind.

Good grief. Is there anything that can be done and/or are you getting the support you need to understand what will happen?

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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1 hour ago, gingerjon said:

Good grief. Is there anything that can be done and/or are you getting the support you need to understand what will happen?

I’ll have to go back as I kinda zoned out throughout the session. I was too busy thinking about the future consequences. I have more questions for them.

I’ve been told to follow a healthy eye diet and lifestyle which is very similar to my current diet and lifestyle. Certain vitamin supplements may also slow it down. That’s the only thing they can do at this point.

Once it escalates they have ways of managing it that can involve injections into the eye but there is no cure.

I just have to bring forward certain life plans and hope I’m one of those who go for decades before going blind and not one who goes blind in just a few years.

 

Edited by Copa
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My mother had it and had a private operation to fit a new plastic lens that dispersed light onto other parts of the retina. It didn't work for her, but she was in her eighties and the  doctor who pushed it hasn't got the greatest reputation.

However, you might investigate the process with a public-service eye doctor.

Under Scrutiny by the Right-On Thought Police

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