It's been another lengthy interval since my last post. My old friend Gerhard from the beautiful city of Heidelberg asks whether my feelings about the blog have changed. It's not that I've lost interest or questioned its usefulness. The reason for the 'silence' has everything to do with the ongoing discomfort/pain I continue to experience when I sit for any length of time.
So the update on my condition is a mixed one. I continue to make progress in terms of the wound and the surgery but the leg/back sciatica-type pain persists and sometimes causes despair.
I have had two recent consultations at the Queen Elizabeth Hospital; the first with the urology surgeon, Mr Patel, who expressed some justifiable pride on examining my scar. He gave us the mathematical expression in the title. Succinctly it means that I have renal cell carcinoma (RCC); p stands for pathology (the condition of the organ), T3a means 'the cancer extends into the renal vein or the fat around the kidneys but not the fibrous tissues (Gerota's fascia)', Nx means that the lymph nodes were not examined (unnecessary as they already knew that cancer had spread which is what the M1 denotes, M meaning metastases.)
Fuhrman grade 4 means that the cancer is aggressive, 4 being the highest grading.
So, that didn't appear so good........ we didn't stay long. Some weeks ago we had taken out membership of the University of Birmingham's, Winterbourne Gardens, which lie close by. It has become our custom after every hospital visit to spend some 'recovery' time amid the trees and flowers. We drove there directly.
The follow-up meeting with the oncologist took place two days later. We had more time with Doctor Karina to talk through the treatment programme that would now follow from the histology results. She had some further bad news when she explained that the metastases had spread to both lungs and numbered 4 or 5, rather than 2, as we had been previously informed.
However she was upbeat about my longevity - though there are of course no guarantees. She explained that aggressive RCC responds well to the oral medication I would start in a few weeks time. She also added that this was a drug I would be on for the remainder of my life. The cancer would eventually find a way 'round' the medication; the treatment was palliative and not a cure.
I have another CT scan in a couple of weeks and the drug treatment commences a few weeks later - the delay is to give my body a chance to recover from the surgery.
Meanwhile these damn back/leg symptons continue - I have been re-referred to the Royal Orthopaedic Hospital and see the consultant in October. I'm still being 'twin tracked' though Dr Karina has raised a new linkage possibility - that the neurological condition stems from some, as yet undiscovered, tumour.
I've more than used up my tolerance-at-the-computer time and your capacity to absorb medical information.
I hope to blog more discursively in the near future................
Wednesday, 24 August 2011
Saturday, 6 August 2011
The week of widening circles
This has been a week in which many of the footholds, along the rocky road to recovery, have proved to be pretty secure.
Following deliverance from the dreaded d and v I have spent much time during the last week in the company of Diana. At the start we ventured forth in my second post-operative car journey. Suffice it to say it proved to be a case of my wound having healed somewhat - or Di's driving technique having improved since the day of discharge nearly two weeks earlier. We visited two country parks and completed two modest walks all the while ensuring that we were never too far from my new favourite permitted food - ice lollies.
The second walk was interrupted by an elderly gent with a walking stick who made some jocular reference to the speed at which I was walking. I resisted the temptation to trump his witticism with a flash of my 40cm scar.
The following day we made a trip to the new sushi bar in Touchwood - expensive and exhausting - but then, to be fair, I have always found visits to any shopping mall exhausting (and expensive), so little can be deduced concerning my physical recovery.
On Thursday we went even further, an hour's drive into the Northamptonshire countryside. Di's sister, Liz, lives in the hamlet of Sulby, near Welford and while the two of them went for a coffee and window-shop in Market Harborough, I was deposited into the safe hands of Alison, guardian of the magical Sulby Gardens. Alison's nine acres are devoted to the provision of a refuge for local wildlife. The gardens thrum to the rhythm of nature's families - flower, insect, fish, bird, mammal. That day's highlights included the sighting of slow worms, a grass snake, numerous tench and rudd, a couple of the 15 or so species of dragonfly that inhabit the numerous ponds and the identification of various hoverflies in one of the wildflower meadows.
The week ended with a visit to the Eye Clinic, currently at Selly Oak but soon to transfer to the QEH site. An examination by the consultant concluded that the retinal haemorrhage in my right eye was still visible but 'calming down' and that I would continue to be monitored without treatment. Everything depends on ensuring that my blood pressure remained reasonably low. I asked for a signed letter stating that everyone has to be nice to me and ensure that I am subjected to no undue stresses.
Following deliverance from the dreaded d and v I have spent much time during the last week in the company of Diana. At the start we ventured forth in my second post-operative car journey. Suffice it to say it proved to be a case of my wound having healed somewhat - or Di's driving technique having improved since the day of discharge nearly two weeks earlier. We visited two country parks and completed two modest walks all the while ensuring that we were never too far from my new favourite permitted food - ice lollies.
The second walk was interrupted by an elderly gent with a walking stick who made some jocular reference to the speed at which I was walking. I resisted the temptation to trump his witticism with a flash of my 40cm scar.
The following day we made a trip to the new sushi bar in Touchwood - expensive and exhausting - but then, to be fair, I have always found visits to any shopping mall exhausting (and expensive), so little can be deduced concerning my physical recovery.
On Thursday we went even further, an hour's drive into the Northamptonshire countryside. Di's sister, Liz, lives in the hamlet of Sulby, near Welford and while the two of them went for a coffee and window-shop in Market Harborough, I was deposited into the safe hands of Alison, guardian of the magical Sulby Gardens. Alison's nine acres are devoted to the provision of a refuge for local wildlife. The gardens thrum to the rhythm of nature's families - flower, insect, fish, bird, mammal. That day's highlights included the sighting of slow worms, a grass snake, numerous tench and rudd, a couple of the 15 or so species of dragonfly that inhabit the numerous ponds and the identification of various hoverflies in one of the wildflower meadows.
The week ended with a visit to the Eye Clinic, currently at Selly Oak but soon to transfer to the QEH site. An examination by the consultant concluded that the retinal haemorrhage in my right eye was still visible but 'calming down' and that I would continue to be monitored without treatment. Everything depends on ensuring that my blood pressure remained reasonably low. I asked for a signed letter stating that everyone has to be nice to me and ensure that I am subjected to no undue stresses.
Sunday, 31 July 2011
Warning - if squeamish, turn away now
This blog is not for the faint-hearted. Those of a nervous disposition are advised to turn away now.......
There is nothing quite so joyous as the gestation and safe delivery of a solid, tawny, stool - still less a series, after a debilitating week of d and v. It/they appeared early this morning, while most of you were mercifully, sound asleep - the deserved and desired product, no doubt, of the cutting out of some drugs from the regimen I've been taking. Di had been researching side-effects and the spotlight had fallen on ferrous sulphate ( taken because I was anaemic after blood loss during the operation) and tramadol (a painkiller) so we'd excluded both over the previous couple of days.
Pharmaceutical replacements were already in the pipeline however because as if d and v were not enough, I'd also experienced an onset of obsessive itching that has left much of my skin looking like an aerial view of the surface of Mars. So you drop a couple of drugs here, you take on a few more there - anti-emetic tabs, anti-histamine tabs and skin lotion. The kitchen work-surface looks like an illicit pharmacy. Come round for a meal and who knows what ingredients will be on the menu?
But returning, as I must, to the subject of my stools, they now hold the promise of the onset of a new phase in my recovery. The wound is healing and the 'cling film' covering it is beginning to peel away. (If interested, for a small fee, there are pictures, taken by an indecently-enthusiastic Diana). The remaining bruising is much less psychedelic though it is also difficult to escape the sense that the left side of my chest has been encased in a steel clamp. I practise deep breathing in order to stretch the wound; the skin, muscle, tissue.
Unfortunately the neurological problem with my left leg continues to make it difficult to sit comfortably for any length of time.
Finally a mea culpa; over the last few days I have been guilty of some severe bouts of 'feeling sorry for myself' and must apologise to anyone who feels they have been a victim. As ever the star award goes to Diana for disdainful dismissal of my morose comment when boxes of the prepared nutrient meal appeared; 'God, I know death must be near when Complan is in the house'.
There is nothing quite so joyous as the gestation and safe delivery of a solid, tawny, stool - still less a series, after a debilitating week of d and v. It/they appeared early this morning, while most of you were mercifully, sound asleep - the deserved and desired product, no doubt, of the cutting out of some drugs from the regimen I've been taking. Di had been researching side-effects and the spotlight had fallen on ferrous sulphate ( taken because I was anaemic after blood loss during the operation) and tramadol (a painkiller) so we'd excluded both over the previous couple of days.
Pharmaceutical replacements were already in the pipeline however because as if d and v were not enough, I'd also experienced an onset of obsessive itching that has left much of my skin looking like an aerial view of the surface of Mars. So you drop a couple of drugs here, you take on a few more there - anti-emetic tabs, anti-histamine tabs and skin lotion. The kitchen work-surface looks like an illicit pharmacy. Come round for a meal and who knows what ingredients will be on the menu?
But returning, as I must, to the subject of my stools, they now hold the promise of the onset of a new phase in my recovery. The wound is healing and the 'cling film' covering it is beginning to peel away. (If interested, for a small fee, there are pictures, taken by an indecently-enthusiastic Diana). The remaining bruising is much less psychedelic though it is also difficult to escape the sense that the left side of my chest has been encased in a steel clamp. I practise deep breathing in order to stretch the wound; the skin, muscle, tissue.
Unfortunately the neurological problem with my left leg continues to make it difficult to sit comfortably for any length of time.
Finally a mea culpa; over the last few days I have been guilty of some severe bouts of 'feeling sorry for myself' and must apologise to anyone who feels they have been a victim. As ever the star award goes to Diana for disdainful dismissal of my morose comment when boxes of the prepared nutrient meal appeared; 'God, I know death must be near when Complan is in the house'.
Thursday, 28 July 2011
I'm back - well, at least most of me is.............
Firstly, I'd like to apologise to everyone who has been reading the blog (and I know from emails, followers and cards that there have been a few) for the interval that has elapsed since my last post.
It hasn't been an easy time.
Thank you Claire, for keeping the blog going over the time I was in hospital (even if your spelling of metastases was inclined to wander off the beaten track!)
I hope to write more about the period in hospital at some later date but will settle today for finding the energy to briefly update you all since my return home just over a week ago.
I'll admit that I wasn't looking forward to the transfer. Given the difficulty I was having in getting from the bed to the bathroom, coping with the many moments of energy expenditure entailed in travelling from my automated bed on the 4th floor of the QE to a 'fixed bed' many thousands of steps up from the ground floor of our house seemed an impossible task. I was firmly assured that it wasn't.
Nevertheless, the car drive felt like we were on a grand prix circuit, slewing around corners with Di apparently searching for every pothole she could find. At times like these the suspension on a standard motor car appears less than adequate.
Approaching our destination I experienced some nausea ( another word already on the move in hospital - from nor-zee-a to nor-sha. We must resist this trend to Americanisation). I stood in front of our newly painted pink door (!), bent double, hoping against hope that my body wasn't going to be wracked by a vomiting attack. The strain on my recently lacerated side would have been excrutiating. Di and Claire looked on helplessly until the moment passed. I pretty much flew up those stairs and into that wonderful bed I had so recently maligned.
Since then it's been pretty much a story of gradual progress marred by two developments; firstly, the realisation that the neurological discomfort/pain in my leg (the search for explanation to which had led to the discovery of the tumour) had not gone away and secondly; the onset in the last five days or so of a phase of d and v. This is not good news because apart from the debilitating effects it also plays havoc with the pain control regimen.
I'm just about at the end of my energy store at the moment. I can't end without telling you about the amount I owe to Diana and Claire and Joe for their care of me. They have been so attentive, so responsive to my needs - and they are faced with some time yet to come.
Many thanks too, to everyone for your support, cards and kind words. It is difficult to ensure that everyone gets an individual response but your thoughtfulness, especially at a time when my reserves are low, is much appreciated.
It hasn't been an easy time.
Thank you Claire, for keeping the blog going over the time I was in hospital (even if your spelling of metastases was inclined to wander off the beaten track!)
I hope to write more about the period in hospital at some later date but will settle today for finding the energy to briefly update you all since my return home just over a week ago.
I'll admit that I wasn't looking forward to the transfer. Given the difficulty I was having in getting from the bed to the bathroom, coping with the many moments of energy expenditure entailed in travelling from my automated bed on the 4th floor of the QE to a 'fixed bed' many thousands of steps up from the ground floor of our house seemed an impossible task. I was firmly assured that it wasn't.
Nevertheless, the car drive felt like we were on a grand prix circuit, slewing around corners with Di apparently searching for every pothole she could find. At times like these the suspension on a standard motor car appears less than adequate.
Approaching our destination I experienced some nausea ( another word already on the move in hospital - from nor-zee-a to nor-sha. We must resist this trend to Americanisation). I stood in front of our newly painted pink door (!), bent double, hoping against hope that my body wasn't going to be wracked by a vomiting attack. The strain on my recently lacerated side would have been excrutiating. Di and Claire looked on helplessly until the moment passed. I pretty much flew up those stairs and into that wonderful bed I had so recently maligned.
Since then it's been pretty much a story of gradual progress marred by two developments; firstly, the realisation that the neurological discomfort/pain in my leg (the search for explanation to which had led to the discovery of the tumour) had not gone away and secondly; the onset in the last five days or so of a phase of d and v. This is not good news because apart from the debilitating effects it also plays havoc with the pain control regimen.
I'm just about at the end of my energy store at the moment. I can't end without telling you about the amount I owe to Diana and Claire and Joe for their care of me. They have been so attentive, so responsive to my needs - and they are faced with some time yet to come.
Many thanks too, to everyone for your support, cards and kind words. It is difficult to ensure that everyone gets an individual response but your thoughtfulness, especially at a time when my reserves are low, is much appreciated.
Thursday, 21 July 2011
Thursday Update from Claire
Dad came home yesterday afternoon from the hospital. They had him all packed up and ready to go when Di went to visit at 2:30pm.
He is doing well and able to get up and down the stairs. He still tires very quickly, sleeps a lot and is on all kind of pain medication. Its good to have him home though where we can keep a close eye on him.
I have a feeling he'll be back updating this blog himself before too much longer...
He is doing well and able to get up and down the stairs. He still tires very quickly, sleeps a lot and is on all kind of pain medication. Its good to have him home though where we can keep a close eye on him.
I have a feeling he'll be back updating this blog himself before too much longer...
Tuesday, 19 July 2011
Tuesday News (from Claire)
Today was the first time I'd seen dad for 2 days as I didn't make it in yesterday when Di and Joe went to visit. Imagine my surprise then to find him up and about (walking back from the toilet) and in his pyjamas (no more natty hospital gown).
He continues to look better and brighter and his appetite seems to be fully back to normal. He does still tire easily but we hope to have him home tomorrow and away from his continually vomiting neighbour on the ward.
He continues to look better and brighter and his appetite seems to be fully back to normal. He does still tire easily but we hope to have him home tomorrow and away from his continually vomiting neighbour on the ward.
Sunday, 17 July 2011
Mini Update (Claire)
We went back in to see dad again today and 24hours have shown a big improvement. He was talking a lot more clearly and was just much more 'with it'. He was eating more today and although he still gets tired a lot he managed to sit in a chair for an hour. The staff are good but seem to be under pressure from the consultant to get him back home asap!
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