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We need a demo.....
Nearly there....
- Thread starter Pipmeister
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Too right
Pipmeister
Senior Retro Guru
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I’m popping this on here with a view to keeping you all informed, but hopefully without getting too complicated. Close friends and family aside, it is difficult for me to comment or answer appropriately when someone asks “How you doing?” or say in a message “Hope you are feeling well”.
Anyway, here is a summary of my current situation and the care by the NHS:
A little recap; You may be aware that Oncology have now exhausted all options of any further Chemotherapy. The last course that I had was from Jan – June 2020, and this was only with a view to temporarily holding back the spread of the disease, but was never capable of curing me of it. In addition to that, while I was receiving the treatment, I suffered all the usual unpleasant side-effects of the Chemotherapy treatment….. and it is a right old head fu#k being “made to feel grotty”, by treatment that was never able to cure me. By the end of that year, I was handed over Palliative Care, which is managed from my local Community Hospital.
Coming up to date then: My regular monthly Zoom Meetings with my Palliative Care Macmillan Consultant, are designed to inform them about my condition, which in turn helps them prescribe suitable medication to relieve me from the discomfort of the progression of the disease. This currently is a combination of Opiates, Neuropathic drugs and Dexamethasone. The higher the dosage, the more relief they can provide, but at the expense of being more “Out of it / Stoned / Away with the fairies” - lol.
Beyond that, there are a few blood tests, which can reveal a certain amount of information, and of course a C.T. Scan or Computed Tomography, which many people are familiar with, and also the more revealing P.E.T. Scan or Positron Emission Tomography.
The latest, was a Blood Test on Thursday 25th for Renal and Liver Function and Full Blood Count, which will now allow my Palliative Care Consultant to request a C.T. Scan, hopefully before Christmas. I’m not sure what Palliative Care will do with the findings of a Scan, but I assume it will help them piece together what I am telling them when they ask me, “How do you feel at the moment?”
My current situation then is that I feel pretty grim everyday now, and it is taking more effort to do most “normal” tasks. I can still keep my place tidy, and “cook”, and contribute on here, but I don’t think any of those things will become easier now – I think what I currently have is no more or less than should be expected. I may be able to prise something more out of my Consultant when I speak to her via my next Zoom Meeting on the 15th Dec. If things become too overwhelming before then, I can always call up Macmillan for help and advice.
As far as maintaining the Kona Custom Program Serial Number lists……. well, all I can say is that the updating may become a little overdue from time to time, and it would be most helpful if some people could follow up with pictures etc. that they have promised.
Rightyho, it has taken a bit of effort putting this together, and I’m not sure if it has achieved what I set out to do, but at least it has made me feel a bit better to have got something written down.
Pip.
Anyway, here is a summary of my current situation and the care by the NHS:
A little recap; You may be aware that Oncology have now exhausted all options of any further Chemotherapy. The last course that I had was from Jan – June 2020, and this was only with a view to temporarily holding back the spread of the disease, but was never capable of curing me of it. In addition to that, while I was receiving the treatment, I suffered all the usual unpleasant side-effects of the Chemotherapy treatment….. and it is a right old head fu#k being “made to feel grotty”, by treatment that was never able to cure me. By the end of that year, I was handed over Palliative Care, which is managed from my local Community Hospital.
Coming up to date then: My regular monthly Zoom Meetings with my Palliative Care Macmillan Consultant, are designed to inform them about my condition, which in turn helps them prescribe suitable medication to relieve me from the discomfort of the progression of the disease. This currently is a combination of Opiates, Neuropathic drugs and Dexamethasone. The higher the dosage, the more relief they can provide, but at the expense of being more “Out of it / Stoned / Away with the fairies” - lol.
Beyond that, there are a few blood tests, which can reveal a certain amount of information, and of course a C.T. Scan or Computed Tomography, which many people are familiar with, and also the more revealing P.E.T. Scan or Positron Emission Tomography.
The latest, was a Blood Test on Thursday 25th for Renal and Liver Function and Full Blood Count, which will now allow my Palliative Care Consultant to request a C.T. Scan, hopefully before Christmas. I’m not sure what Palliative Care will do with the findings of a Scan, but I assume it will help them piece together what I am telling them when they ask me, “How do you feel at the moment?”
My current situation then is that I feel pretty grim everyday now, and it is taking more effort to do most “normal” tasks. I can still keep my place tidy, and “cook”, and contribute on here, but I don’t think any of those things will become easier now – I think what I currently have is no more or less than should be expected. I may be able to prise something more out of my Consultant when I speak to her via my next Zoom Meeting on the 15th Dec. If things become too overwhelming before then, I can always call up Macmillan for help and advice.
As far as maintaining the Kona Custom Program Serial Number lists……. well, all I can say is that the updating may become a little overdue from time to time, and it would be most helpful if some people could follow up with pictures etc. that they have promised.
Rightyho, it has taken a bit of effort putting this together, and I’m not sure if it has achieved what I set out to do, but at least it has made me feel a bit better to have got something written down.
Pip.
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Hang in there. Thoughts and best wishes x
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Pip, as ever, the way you're handling this is inspirational.
Much Love, friend.
Much Love, friend.
Always the don dapper
Pipmeister
Senior Retro Guru
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Thank you very much for your kind words and thoughts. Continuing on from the above, I had a 1-hour Clinic with my Palliative Care Consultant yesterday. We covered a lot of ground in an hour and it became somewhat complex, but here is the gist if it.
The Kidney Function and Liver Function Blood tests showed that the markers continue to elevate, moving in an expected but wrong direction. The Kidney Function was slightly ambiguous, and my Consultant will request an Ultrasound Scan as well as the C.T. Scan that has already been requested. I was then physically examined, which for the first time highlighted the discomfort in my Abdomen.
My Consultant could feel externally where my Liver has become distended, and hardened. This would explain the general pain in my belly, and why I feel a bit out of sorts most of the time. I assume that the C.T. Scan may reveal more, although I’m not sure if any sort of time scale can be determined – i.e. how much and by when will my day to day activities be affected. All I can say is that when I was first given the Terminal Diagnosis in Dec 2019, I felt absolutely brilliant. My Colostomy Bag had been reversed in June, I had loads of energy, and I could cycle like a racing Whippet
.
Coming up to date two years on, I can now “feel” something externally in my Liver, and I have very little energy, which is “managed“ by some pretty hectic Class A Drugs; talking of which, my Consultant has increased the dose of two of them, and added two further pretty standard drugs for pain relief.
My Consultant asked me how I feel about all this, and I always respond by saying, “This is where we are with it, this is ‘the news’ – we can’t do anything about that, so nothing will be achieved by getting dispirited about it. It’s the cards that I have been dealt.
I would like to get my place clear of tat, so that my brother and sister don’t have a huge task of wading through my clutter. I’ve done the biggest and trickiest clear-out by moving my massive bike collection on - thanks Wadsy. This may seem premature to some of you, but it will make me feel better if there is very little to sort out when I am no longer able to do so. My Consultant did add that if I feel this would be beneficial to me, that it would be wise to get moving on this now while I have the energy and the wherewithal.
Phew, I reckon that’ll do for now!
Pip.
The Kidney Function and Liver Function Blood tests showed that the markers continue to elevate, moving in an expected but wrong direction. The Kidney Function was slightly ambiguous, and my Consultant will request an Ultrasound Scan as well as the C.T. Scan that has already been requested. I was then physically examined, which for the first time highlighted the discomfort in my Abdomen.
My Consultant could feel externally where my Liver has become distended, and hardened. This would explain the general pain in my belly, and why I feel a bit out of sorts most of the time. I assume that the C.T. Scan may reveal more, although I’m not sure if any sort of time scale can be determined – i.e. how much and by when will my day to day activities be affected. All I can say is that when I was first given the Terminal Diagnosis in Dec 2019, I felt absolutely brilliant. My Colostomy Bag had been reversed in June, I had loads of energy, and I could cycle like a racing Whippet
.Coming up to date two years on, I can now “feel” something externally in my Liver, and I have very little energy, which is “managed“ by some pretty hectic Class A Drugs; talking of which, my Consultant has increased the dose of two of them, and added two further pretty standard drugs for pain relief.
My Consultant asked me how I feel about all this, and I always respond by saying, “This is where we are with it, this is ‘the news’ – we can’t do anything about that, so nothing will be achieved by getting dispirited about it. It’s the cards that I have been dealt.
I would like to get my place clear of tat, so that my brother and sister don’t have a huge task of wading through my clutter. I’ve done the biggest and trickiest clear-out by moving my massive bike collection on - thanks Wadsy. This may seem premature to some of you, but it will make me feel better if there is very little to sort out when I am no longer able to do so. My Consultant did add that if I feel this would be beneficial to me, that it would be wise to get moving on this now while I have the energy and the wherewithal.
Phew, I reckon that’ll do for now!
Pip.
As ever, all is full of love dude 
