'If all parts of the system work smoothly, the [scan] results will be securely and digitally despatched to the ROH in time for the MDT meeting. Our hope is, that my case will be discussed and a date for surgery agreed and in the near future.'
The above is an extract from my previous post which told of my referral to the Royal Orthopaedic Hospital (ROH), nine days ago The decision then had been that the surgeon needed more scan information before the date for any hip operation could be set.
I am very pleased to report that the system DID work smoothly.
I went for that evening MRI scan at the Priory Hospital (Monday 23rd September) and their strategy of allowing me to enter the 'tunnel' feet-first left my rolled-back eyes with just enough of a view of the outside world to quieten my incipient claustrophobia. It was a close run thing but fifty minutes later I was safely disinterred. Nursing an emaciated credit card we left for home.
The transfer of the MRI images to the ROH evidently happened because the very next day (Tuesday lunchtime, 24th) I was phoned by another consultant who told me that my case had been discussed at the multidisciplinary team (MDT) meeting that morning. The very good news was that, in his view, a normal hip replacement would be possible as the femur below the head was cancer-free. He said that, given the urgency, I could expect to be operated on within a fortnight.
The following day (yesterday) the surgeon's secretary phoned to say that a date had been scheduled, next Monday (30th).
Buoyed by the news, we drove to Gethin and Judith's home in Ticknall, Derbyshire. They had researched a day trip that would take in a walk/wheelchair ride of the impressive Staunton Harold estate (recommended) and then a detour through the picturesque town of Melbourne. On crutches, I was able to gawp at the wonders of the the largely-Norman parish church which has ambitions to be a cathedral. It is an amazing place for those who love massive, Romanesque columns and zigzag patterned arches. As I now know, it is given top rating by Betjeman's Best British Churches.
We strolled/hobbled past the lake below the adjacent Melbourne Hall before returning to Brum and thereafter, bed - I haven't been out of it since as I ratchet up the practice regime for my 'confinement' next week.
I didn't think that I'd ever say that I was looking forward to a hip replacement operation but then again there are a lot of other equally outlandish statements that have escaped my lips over the last two and a half years.
Joe is making a flying visit from his current sojourn in the University of Ljubljana in Slovenia, so it's possible that he can be persuaded to pick up a keyboard and post the next post-op. bulletin?
Thursday 26 September 2013
Thursday 19 September 2013
Walking on eggshell.
A couple of days ago I posted an update on the Manchester debacle and my referral back to Brum. We were awaiting an appointment at the Royal Orthopaedic Hospital with a surgeon to discuss the treatment for a recently located metastasis in the head of my femur and the possible timing for surgery.
Well, the meeting took place on Tuesday, two days ago. I'm really not complaining but I think it helps to set the context for further decisions if I tell you that the out-patient clinic was very busy and we were just about the last to be seen, nearly three hours after our appointment time of 3.00pm. The registrar who greeted us was initially trying to juggle images of my femur/hip area with medical reports, my case history and a mobile phone that regularly disturbed and distracted him. He explained that in addition to working in the clinic he was 'on call' for the wards and other enquiries.
We weren't sure whether to feel sorry for him or us.
Unsure as to the significance of the scan images he eventually asked the consultant for his opinion. A tall man, his cheerful and assertive handshake was matched by a prompt conclusion - further scans were needed to establish how far down the femur the cancer may have travelled. This could only be determined by another MRI. He was alarmingly clear that a large 'hole' was located in the head of the femur leaving an outer layer within the socket, 'eggshell thin'. This could be tackled straightforwardly by a full hip replacement - unless the length of the femur was compromised.
He asked his registrar to send an urgent MRI request to my oncologist. 'Urgent', we discovered meant within two weeks at the QEH or three at ROH. Both appeared ominously lengthy. Quite apart from the anxiety about the state of the femur and learning a date for surgery, the cancer clock was still ticking, some three months after my last chemo dosage.
The next day, as details of the likely wait unfolded we made a decision - one that I'm sure all our friends and family will understand - we would 'go private'. For £577 you can get a 'two-site' MRI scan at the Priory Hospital. There was just one slot before the next Multidisciplinary Team Meeting next Tuesday morning at the ROH, Monday evening. We briefly visited today, just to ensure that the scanner would not trigger my susceptibility to claustrophobia - even as my wallet experiences an unwelcome attack of agoraphobia.
If all parts of the system work smoothly, the results will be securely and digitally despatched to the ROH in time for the MDT meeting. Our hope is, that my case will be discussed and a date for surgery agreed and in the near future.
Meanwhile, we have had so many phone calls and visits from friends, there's been little time to enter a downward spiral - though having said that, there are still some slots between 3.00 - 5.00 a.m. that have yet to be filled.
There are sure to be more twists in this gripping/griping medical thriller - stay tuned.
Well, the meeting took place on Tuesday, two days ago. I'm really not complaining but I think it helps to set the context for further decisions if I tell you that the out-patient clinic was very busy and we were just about the last to be seen, nearly three hours after our appointment time of 3.00pm. The registrar who greeted us was initially trying to juggle images of my femur/hip area with medical reports, my case history and a mobile phone that regularly disturbed and distracted him. He explained that in addition to working in the clinic he was 'on call' for the wards and other enquiries.
We weren't sure whether to feel sorry for him or us.
Unsure as to the significance of the scan images he eventually asked the consultant for his opinion. A tall man, his cheerful and assertive handshake was matched by a prompt conclusion - further scans were needed to establish how far down the femur the cancer may have travelled. This could only be determined by another MRI. He was alarmingly clear that a large 'hole' was located in the head of the femur leaving an outer layer within the socket, 'eggshell thin'. This could be tackled straightforwardly by a full hip replacement - unless the length of the femur was compromised.
He asked his registrar to send an urgent MRI request to my oncologist. 'Urgent', we discovered meant within two weeks at the QEH or three at ROH. Both appeared ominously lengthy. Quite apart from the anxiety about the state of the femur and learning a date for surgery, the cancer clock was still ticking, some three months after my last chemo dosage.
The next day, as details of the likely wait unfolded we made a decision - one that I'm sure all our friends and family will understand - we would 'go private'. For £577 you can get a 'two-site' MRI scan at the Priory Hospital. There was just one slot before the next Multidisciplinary Team Meeting next Tuesday morning at the ROH, Monday evening. We briefly visited today, just to ensure that the scanner would not trigger my susceptibility to claustrophobia - even as my wallet experiences an unwelcome attack of agoraphobia.
If all parts of the system work smoothly, the results will be securely and digitally despatched to the ROH in time for the MDT meeting. Our hope is, that my case will be discussed and a date for surgery agreed and in the near future.
Meanwhile, we have had so many phone calls and visits from friends, there's been little time to enter a downward spiral - though having said that, there are still some slots between 3.00 - 5.00 a.m. that have yet to be filled.
There are sure to be more twists in this gripping/griping medical thriller - stay tuned.
Sunday 15 September 2013
To Manchester and back.
It's Sunday evening and I need to update this blog.
It's been a long time coming because the developments since my last post might be, euphemistically described as, unpromising. If you haven't heard the details, I will take you back to where I left off, blogwise, with a decision to be made about joining the immunotherapy programme at Manchester's Christie hospital. It was a no-brainer, I quickly said 'yes' though I'll admit to having some continuing anxieties about the side effects that might be expected.
However, I never started Manchester. My acceptance of a place prompted the organising of two pre-admission scans; one an echo-cardiogram to establish whether my heart could cope with the stress of the treatment and a new baseline CT against which future post-treatment cycles could be measured. I passed the first but failed the second.
But I need to rewind.....
Prior to these scans we had left Brum to start a ten-day holiday in Scotland, taking in stops in Boat of Garten, a cottage in the Torridon area and a Bank holiday weekend in Edinburgh. Before the trip North I had already begun to experience some pain in my left hip and this quickly worsened so that by the time we reached Torridon, I was pretty much confined to the bedroom apart from brief journeys out with the aid of a stick.
I was able to take some vicarious enjoyment from Joe's kayaking and walking trips but I was in truth, frightened about what might be happening and eager to get home. We left Joe in Edinburgh to visit some of the Festival Fringe events and once the Bank Holiday was over approached our GP surgery for help.
At the same time there were the scans to undergo. A week after arriving home, I had completed both and awaited results. I had already asked for the CT scan to include the pelvic/hip region and just a few days before I was due to be admitted to Christie's I was told that the scan showed metastatic spread to the head of the femur requiring urgent surgery. I was advised to avoid any weight-bearing use of the left leg and referred back to the QEH.
We were devastated. The tsunami of fear and distress was not unlike that which we had experienced at the time of the original cancer diagnosis more than two years earlier. Not only had our hopes for a cure evaporated but I was faced with the prospect of major surgery and uncertainty as to what else might be happening given that I had been off 'chemo' drugs for 8/9 weeks. And as a constant reminder of my plight, I now go nowhere without a stick (a few feet), elbow crutches (a few metres) or wheelchair (for any greater distance).
Friends and family have been generous and supportive but being so disabled is difficult to accept.
A week later, I had a meeting with my QEH consultant oncologist who managed to establish that the referral he had made to the Royal Orthopaedic Hospital had resulted in an appointment for the following Tuesday. Yesterday, I visited the ROH for x-rays and today, I wait for Tuesday's appointment.
I feel a little better than I did but the waves still threaten.
So, I am trying, as my brother John advises, to 'stay in the moment' by which he means, 'don't think too far ahead, take things one day at a time and try to be positive.' It helps, up to a point but with both the cancer and surgery-clock ticking, it is both difficult to weight and wait-bear.
It's been a long time coming because the developments since my last post might be, euphemistically described as, unpromising. If you haven't heard the details, I will take you back to where I left off, blogwise, with a decision to be made about joining the immunotherapy programme at Manchester's Christie hospital. It was a no-brainer, I quickly said 'yes' though I'll admit to having some continuing anxieties about the side effects that might be expected.
However, I never started Manchester. My acceptance of a place prompted the organising of two pre-admission scans; one an echo-cardiogram to establish whether my heart could cope with the stress of the treatment and a new baseline CT against which future post-treatment cycles could be measured. I passed the first but failed the second.
But I need to rewind.....
Prior to these scans we had left Brum to start a ten-day holiday in Scotland, taking in stops in Boat of Garten, a cottage in the Torridon area and a Bank holiday weekend in Edinburgh. Before the trip North I had already begun to experience some pain in my left hip and this quickly worsened so that by the time we reached Torridon, I was pretty much confined to the bedroom apart from brief journeys out with the aid of a stick.
I was able to take some vicarious enjoyment from Joe's kayaking and walking trips but I was in truth, frightened about what might be happening and eager to get home. We left Joe in Edinburgh to visit some of the Festival Fringe events and once the Bank Holiday was over approached our GP surgery for help.
At the same time there were the scans to undergo. A week after arriving home, I had completed both and awaited results. I had already asked for the CT scan to include the pelvic/hip region and just a few days before I was due to be admitted to Christie's I was told that the scan showed metastatic spread to the head of the femur requiring urgent surgery. I was advised to avoid any weight-bearing use of the left leg and referred back to the QEH.
We were devastated. The tsunami of fear and distress was not unlike that which we had experienced at the time of the original cancer diagnosis more than two years earlier. Not only had our hopes for a cure evaporated but I was faced with the prospect of major surgery and uncertainty as to what else might be happening given that I had been off 'chemo' drugs for 8/9 weeks. And as a constant reminder of my plight, I now go nowhere without a stick (a few feet), elbow crutches (a few metres) or wheelchair (for any greater distance).
Friends and family have been generous and supportive but being so disabled is difficult to accept.
A week later, I had a meeting with my QEH consultant oncologist who managed to establish that the referral he had made to the Royal Orthopaedic Hospital had resulted in an appointment for the following Tuesday. Yesterday, I visited the ROH for x-rays and today, I wait for Tuesday's appointment.
I feel a little better than I did but the waves still threaten.
So, I am trying, as my brother John advises, to 'stay in the moment' by which he means, 'don't think too far ahead, take things one day at a time and try to be positive.' It helps, up to a point but with both the cancer and surgery-clock ticking, it is both difficult to weight and wait-bear.
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