How Was Your Day?

[Crinklyfox]

Kick in the teeth.

 

Three years ago I was diagnosed with non-Hodgkins lymphoma - cancer in my blood marrow.  I was told that this was slow-growing and incurable and I didn't have any tumours but that it could change to a fast-growing version which would likely kill me in three to four months if not treated.  I was to have an examination by my cancer doctor every four months.

 

Covid then struck - I last saw my doctor in March 2020 and my examinations were replaced by blood tests looking for the presence of paraproteins - the higher the paraprotein level, the more cancer I had.  I was told that once it reached a certain level I would get chemotherapy to bring the cancer back down again.

 

My paraprotein level was stable at first but then started to rise, and my last result earlier this month showed a significant increase and put me in the range where I was previously told I would get chemotherapy.  However my doctor told me that because of Covid I would now not be offered chemotherapy.  I was stunned at the time and have tried to come to terms with it since.  I may be completely wrong but it appears to me that I have been 'written off', either because of my age or because there are already huge waiting lists for treatments, or both.  Either way I fear that my future will be bleak

[HighPeakFox]

7 minutes ago, Crinklyfox said:

Kick in the teeth.

 

Three years ago I was diagnosed with non-Hodgkins lymphoma - cancer in my blood marrow.  I was told that this was slow-growing and incurable and I didn't have any tumours but that it could change to a fast-growing version which would likely kill me in three to four months if not treated.  I was to have an examination by my cancer doctor every four months.

 

Covid then struck - I last saw my doctor in March 2020 and my examinations were replaced by blood tests looking for the presence of paraproteins - the higher the paraprotein level, the more cancer I had.  I was told that once it reached a certain level I would get chemotherapy to bring the cancer back down again.

 

My paraprotein level was stable at first but then started to rise, and my last result earlier this month showed a significant increase and put me in the range where I was previously told I would get chemotherapy.  However my doctor told me that because of Covid I would now not be offered chemotherapy.  I was stunned at the time and have tried to come to terms with it since.  I may be completely wrong but it appears to me that I have been 'written off', either because of my age or because there are already huge waiting lists for treatments, or both.  Either way I fear that my future will be bleak

No words, other than to send kind thoughts, positive vibes, best wishes, and please get in touch if you ever feel the need.

[StanSP]

Pretty sure the 10% + 2 driving thing is a myth. 

[ozleicester]

44 minutes ago, Crinklyfox said:

Kick in the teeth.

 

Three years ago I was diagnosed with non-Hodgkins lymphoma - cancer in my blood marrow.  I was told that this was slow-growing and incurable and I didn't have any tumours but that it could change to a fast-growing version which would likely kill me in three to four months if not treated.  I was to have an examination by my cancer doctor every four months.

 

Covid then struck - I last saw my doctor in March 2020 and my examinations were replaced by blood tests looking for the presence of paraproteins - the higher the paraprotein level, the more cancer I had.  I was told that once it reached a certain level I would get chemotherapy to bring the cancer back down again.

 

My paraprotein level was stable at first but then started to rise, and my last result earlier this month showed a significant increase and put me in the range where I was previously told I would get chemotherapy.  However my doctor told me that because of Covid I would now not be offered chemotherapy.  I was stunned at the time and have tried to come to terms with it since.  I may be completely wrong but it appears to me that I have been 'written off', either because of my age or because there are already huge waiting lists for treatments, or both.  Either way I fear that my future will be bleak

Sorry to hear this. 

[Milo]

55 minutes ago, Crinklyfox said:

Kick in the teeth.

 

Three years ago I was diagnosed with non-Hodgkins lymphoma - cancer in my blood marrow.  I was told that this was slow-growing and incurable and I didn't have any tumours but that it could change to a fast-growing version which would likely kill me in three to four months if not treated.  I was to have an examination by my cancer doctor every four months.

 

Covid then struck - I last saw my doctor in March 2020 and my examinations were replaced by blood tests looking for the presence of paraproteins - the higher the paraprotein level, the more cancer I had.  I was told that once it reached a certain level I would get chemotherapy to bring the cancer back down again.

 

My paraprotein level was stable at first but then started to rise, and my last result earlier this month showed a significant increase and put me in the range where I was previously told I would get chemotherapy.  However my doctor told me that because of Covid I would now not be offered chemotherapy.  I was stunned at the time and have tried to come to terms with it since.  I may be completely wrong but it appears to me that I have been 'written off', either because of my age or because there are already huge waiting lists for treatments, or both.  Either way I fear that my future will be bleak

Sorry to hear this. Sending you best wishes and thoughts 

[Milo]

48 minutes ago, StanSP said:

Pretty sure the 10% + 2 driving thing is a myth. 

Not so much a myth as a practical application of the law, I think. 
 

There will be a degree of tolerance built in to the calibration of the cameras and your car speedometer. 
 

If they tried to prosecute people for driving at 21 in a 20 I assume they would be snowed under with appeals and challenges. 

On my last speed awareness course (🙄) the subject came up. 

 

[StanSP]

9 minutes ago, Milo said:

On my last speed awareness course (🙄) the subject came up

Same, and they said it doesn't exist

 

I think you're right with the camera tolerance thing though. 

[HighPeakFox]

I think the reality is, when our car says x mph, we're doing y mph. When my car says 77, google maps say 74.

[Alf Bentley]

2 hours ago, Crinklyfox said:

Kick in the teeth.

 

Three years ago I was diagnosed with non-Hodgkins lymphoma - cancer in my blood marrow.  I was told that this was slow-growing and incurable and I didn't have any tumours but that it could change to a fast-growing version which would likely kill me in three to four months if not treated.  I was to have an examination by my cancer doctor every four months.

 

Covid then struck - I last saw my doctor in March 2020 and my examinations were replaced by blood tests looking for the presence of paraproteins - the higher the paraprotein level, the more cancer I had.  I was told that once it reached a certain level I would get chemotherapy to bring the cancer back down again.

 

My paraprotein level was stable at first but then started to rise, and my last result earlier this month showed a significant increase and put me in the range where I was previously told I would get chemotherapy.  However my doctor told me that because of Covid I would now not be offered chemotherapy.  I was stunned at the time and have tried to come to terms with it since.  I may be completely wrong but it appears to me that I have been 'written off', either because of my age or because there are already huge waiting lists for treatments, or both.  Either way I fear that my future will be bleak

 

Very sorry to hear this, Crinkly.

 

Are there any routes through which you could seek to question this recent decision not to offer chemotherapy?

Maybe it's clear that would be pointless or perhaps you'd prefer to devote time and energy to more positive activities, just wondering as arguing and "being pushy" can sometimes be successful?

 

Get in touch by message if it would be useful in any way. I really hope that things turn out much better than you're anticipating. 

[FoxesDeb]

2 hours ago, Crinklyfox said:

Kick in the teeth.

 

Three years ago I was diagnosed with non-Hodgkins lymphoma - cancer in my blood marrow.  I was told that this was slow-growing and incurable and I didn't have any tumours but that it could change to a fast-growing version which would likely kill me in three to four months if not treated.  I was to have an examination by my cancer doctor every four months.

 

Covid then struck - I last saw my doctor in March 2020 and my examinations were replaced by blood tests looking for the presence of paraproteins - the higher the paraprotein level, the more cancer I had.  I was told that once it reached a certain level I would get chemotherapy to bring the cancer back down again.

 

My paraprotein level was stable at first but then started to rise, and my last result earlier this month showed a significant increase and put me in the range where I was previously told I would get chemotherapy.  However my doctor told me that because of Covid I would now not be offered chemotherapy.  I was stunned at the time and have tried to come to terms with it since.  I may be completely wrong but it appears to me that I have been 'written off', either because of my age or because there are already huge waiting lists for treatments, or both.  Either way I fear that my future will be bleak

I'm so sorry to hear this Crinkly. 

 

As Alf says, are there any options open to you, to question the decision?

 

Sending you lots of love and best wishes xx

 

 

[Stadt]

3 hours ago, Crinklyfox said:

Kick in the teeth.

 

Three years ago I was diagnosed with non-Hodgkins lymphoma - cancer in my blood marrow.  I was told that this was slow-growing and incurable and I didn't have any tumours but that it could change to a fast-growing version which would likely kill me in three to four months if not treated.  I was to have an examination by my cancer doctor every four months.

 

Covid then struck - I last saw my doctor in March 2020 and my examinations were replaced by blood tests looking for the presence of paraproteins - the higher the paraprotein level, the more cancer I had.  I was told that once it reached a certain level I would get chemotherapy to bring the cancer back down again.

 

My paraprotein level was stable at first but then started to rise, and my last result earlier this month showed a significant increase and put me in the range where I was previously told I would get chemotherapy.  However my doctor told me that because of Covid I would now not be offered chemotherapy.  I was stunned at the time and have tried to come to terms with it since.  I may be completely wrong but it appears to me that I have been 'written off', either because of my age or because there are already huge waiting lists for treatments, or both.  Either way I fear that my future will be bleak

That's awful news, sorry to hear it Crinkly. Keep pushing back and get a second opinion where you can, some doctors will fight tooth and nail and some won't.

[Crinklyfox]

15 minutes ago, Alf Bentley said:

 

Very sorry to hear this, Crinkly.

 

Are there any routes through which you could seek to question this recent decision not to offer chemotherapy?

Maybe it's clear that would be pointless or perhaps you'd prefer to devote time and energy to more positive activities, just wondering as arguing and "being pushy" can sometimes be successful?

 

Get in touch by message if it would be useful in any way. I really hope that things turn out much better than you're anticipating. 

Morning Alf.

 

I wasn't sure if I should post but was feeling a bit down, and a bit angry after my latest consultation.  Thanks to all who expressed sympathy and offered advice, it's appreciated.  I thought that it would be useful to let the FT community know that there appears to be rationing of services (though again I could be mistaken) due the the current NHS backlog.

 

For the past three years I've been positive in that I could see a way forward.  My diagnosis was a shock initially but there were positives, the largest of which was that I didn't have any tumours (checked by CT scan) and there was a method of cutting down the risk of developing them.  The disappointment is the removal of that method.  The current positives are that I still don't have any tumours (so far as I know), and it is possible that my paraprotein level could reduce without intervention.

 

I stand little chance of challenging the decision as it is a preventive action that's been removed, the NHS is probably concentrating its resources on those requiring urgent curative actions.  I don't know if they would refuse chemotherapy if I actually had life-threatening tumours.  I intent to 'push' this further at my next consultation, which is due in November, if my paraprotein levels continue to increase.  It's possible that the NHS may be under less pressure then (but I expect it will be).  In the meantime I'll be checking for tumours regularly.

[Alf Bentley]

4 minutes ago, Crinklyfox said:

Morning Alf.

 

I wasn't sure if I should post but was feeling a bit down, and a bit angry after my latest consultation.  Thanks to all who expressed sympathy and offered advice, it's appreciated.  I thought that it would be useful to let the FT community know that there appears to be rationing of services (though again I could be mistaken) due the the current NHS backlog.

 

For the past three years I've been positive in that I could see a way forward.  My diagnosis was a shock initially but there were positives, the largest of which was that I didn't have any tumours (checked by CT scan) and there was a method of cutting down the risk of developing them.  The disappointment is the removal of that method.  The current positives are that I still don't have any tumours (so far as I know), and it is possible that my paraprotein level could reduce without intervention.

 

I stand little chance of challenging the decision as it is a preventive action that's been removed, the NHS is probably concentrating its resources on those requiring urgent curative actions.  I don't know if they would refuse chemotherapy if I actually had life-threatening tumours.  I intent to 'push' this further at my next consultation, which is due in November, if my paraprotein levels continue to increase.  It's possible that the NHS may be under less pressure then (but I expect it will be).  In the meantime I'll be checking for tumours regularly.

 

Thanks for explaining. That sounds a reasonable approach.

 

It's understandable that you should feel down and a bit angry in the circumstances, even though you're clearly realistic about the inevitable consequences of the Covid-induced NHS backlog in terms of rationing.

 

To an extent, I can't blame the NHS for focusing limited resources on the more urgent interventions. But I'd hope there wasn't too much prioritisation of curative over preventive. Obviously, if you prevent fewer serious illnesses, you end up with more urgent serious illnesses to cure - and potentially a few years earlier than they might have occurred. I'm sure they'll have factored all this into some tricky decision making.

 

In a much smaller way, I've had some impact from this myself. About 18 months ago, I acquired yet another cardiac arrhythmia, as we've discussed before, but one that had minimal impact re. symptoms. Normally, they'd have probably intervened to correct that about a year ago, but due to Covid delay sthe catheter ablation & cardioversion didn't happen until a month ago. They've now said that because I was in atrial fibrillation for so long, they probably wouldn't do another ablation as the odds are that it would just revert to AF, so not worth the small risk implicit in the ablation. I seem to be staying regular for now, but that might limit options for future treatment and potentially even long-term outcomes.

 

Look after yourself. I enjoy our occasional exchanges about medical issues and music of past decades (rarely about football, funny enough).

[chrishlcfc]

6 hours ago, Crinklyfox said:

Kick in the teeth.

 

Three years ago I was diagnosed with non-Hodgkins lymphoma - cancer in my blood marrow.  I was told that this was slow-growing and incurable and I didn't have any tumours but that it could change to a fast-growing version which would likely kill me in three to four months if not treated.  I was to have an examination by my cancer doctor every four months.

 

Covid then struck - I last saw my doctor in March 2020 and my examinations were replaced by blood tests looking for the presence of paraproteins - the higher the paraprotein level, the more cancer I had.  I was told that once it reached a certain level I would get chemotherapy to bring the cancer back down again.

 

My paraprotein level was stable at first but then started to rise, and my last result earlier this month showed a significant increase and put me in the range where I was previously told I would get chemotherapy.  However my doctor told me that because of Covid I would now not be offered chemotherapy.  I was stunned at the time and have tried to come to terms with it since.  I may be completely wrong but it appears to me that I have been 'written off', either because of my age or because there are already huge waiting lists for treatments, or both.  Either way I fear that my future will be bleak

Really wishing you all the best. Sending my most positive thoughts to you. You’ve helped me out no end with positive words and help in the depression thread so it’s the least I could do to say good luck with it all and hopefully you can get the support and treatment that you need to beat this. 

[chrishlcfc]

Struggling quite a bit with my feet. I mean they’re already basically knackered. I’ve always had problems with my ankles. Had ops, injections the lot. But I hurt my foot playing cricket on Saturday and it’s got me so fed up and it’s hurting more than ever and I have quite a high pain threshold because I’m so used to pain there. I’m about ready to just get the bloody thing amputated to be honest.

 

Its sucked up all my positivity that I’d been creating over the last few weeks and put me back in a really crap place mentally again as well. 

[Free Falling Foxes]

@Crinklyfox

@Alf Bentley

All the very best to you both in the coming weeks and months, I hope you have the best possible outcomes.

 

I appreciated the sharing of your experience when I developed A Fib almost a year ago.

 

Anything I can do, PM me.

 

All the best.

[Alf Bentley]

7 minutes ago, Free Falling Foxes said:

@Crinklyfox

@Alf Bentley

All the very best to you both in the coming weeks and months, I hope you have the best possible outcomes.

 

I appreciated the sharing of your experience when I developed A Fib almost a year ago.

 

Anything I can do, PM me.

 

All the best.

 

Thanks, but I'm fine. Sorry if I gave the impression that I wasn't. My intention was only to mention my own experience of Covid-induced delays to other treatment. Hope A Fib is bothering you as little as it is me.

[Free Falling Foxes]

2 minutes ago, Alf Bentley said:

 

Thanks, but I'm fine. Sorry if I gave the impression that I wasn't. My intention was only to mention my own experience of Covid-induced delays to other treatment. Hope A Fib is bothering you as little as it is me.

Had my cardioversion in November, 3 months after diagnoses. So far so good.

I'm on meds now, the types of which I am sure you are familar with, that leave me a little tired at times.

Thanks for asking.

[Jattdogg]

On 11/07/2022 at 12:34, tom27111 said:

So i have a day off today and tomorrow, thought I should make the most of it and get my pallet decking painted.

 

It's days like this I curse my Irish grandparents for the gift of ginger skin.

 

My back is absolutely red raw 

 

Ah well, the garden looks good!

 

I'm really not built for this weather, I should live somewhere inside the Arctic circle.

 

 

Is this you now?

 

 

 

How did it turn out? Your deck that is.

 

[tom27111]

1 hour ago, Jattdogg said:

 

 

Is this you now?

 

 

 

How did it turn out? Your deck that is.

 

It's nearly done! Looks pretty good actually. 

 

Another coat of paint needed and some gravelboard around the front as the finishing touch.

 

Then as a reward for my hard work, the Mrs is eying up some furniture for it that isn't cheap!

[Jattdogg]

1 hour ago, tom27111 said:

It's nearly done! Looks pretty good actually. 

 

Another coat of paint needed and some gravelboard around the front as the finishing touch.

 

Then as a reward for my hard work, the Mrs is eying up some furniture for it that isn't cheap!

...At least she will be on your deck all the time...

[Crinklyfox]

11 hours ago, Free Falling Foxes said:

Had my cardioversion in November, 3 months after diagnoses. So far so good.

I'm on meds now, the types of which I am sure you are familar with, that leave me a little tired at times.

Thanks for asking.

I was diagnosed with af in 1995, had a DC cardioversion in January 1996, none since.  I had many relapses into af in the first few years but these decreased with time.  I still get the odd bout of af but live my life in sinus rhythm.  I've been on Flecanide Acetate since 1996, Bisoprolol on and off since then and Rivaroxaban for blood thinning - the only one that affected me to begin with was Bisoprolol as a beta blocker but I've become used to it.

[kingfox]

Not great after discovering this disgusting sight from my bedroom window.

[Unabomber]

Just watching a doc about only fans and one of the girls fella is Matt Le Tissier’s son. Matt hasn’t spoken to his son in months due to that. We do live in a mental world.

[tom27111]

Amazon Prime day can fvck right off.

 

Awful couple of days at work due to sheer volume.

 

Amazon reckon they're a logistics company, they aren't. In fact, they're completely clueless.

 

Unfortunately, they have all the drivers bent over a barrel. That's why we're all self employed and they don't directly employ anyone to do it.

 

If they actually got it right, the company would be worth so much more than it already is, but the people who sit in an office think they know more than the people who do the job.

 

Ah well, it'll calm down by Monday!

 

Still doesn't mean they can plan a route, but at least volume will be down and I'll be able to put it in a proper order myself.