Another week with two hospital visits. On Wednesday it was to the Christie hospital for palliative radiation therapy to my left elbow. The ambulance picked me up with just enough time to get to the appointment on time at 14:00. I needed to get out of the wheelchair and onto the flat table to be marked up for the actual RT, but this was managed with little difficulty and help from the RT staff. Rather than getting back into the wheelchair I was transferred to a trolley. That was fine but I was worried the the wheelchair would be "borrowed" but my fears were unfounded.
There was a wait of about an hour before the RT. As I went in for the RT at about 16:15 I was told that the ambulance for my return journey would be booked. Transferring from the table to the wheelchair proved to be more difficult. I could take my weight on my legs but not move my feet. Once I did get back in the chair I was wheeled back to the holding area at about 16:40. The RT department closes at 17:00 so I was soon moved to the transport lounge where I was given a sandwich, piece of cake and a cup of tea. By 17:50 and no sign of transport I was again moved, this time to Ward 12 (I think the transfer lounge must close down too).
I was beginning to get worried now. Would I have the strength to get myself into bed once I got home? My wife was getting concerned too. Should she go to bed (she goes to bed early) and risk not hearing the door bell one I did get home? I arranged with my youngest son that I'd give him a call once I was on my way and he'd help me to bed. He'd also get there before the ambulance so could see to the door allowing my wife to get to bed. I told my son that I'd give a cut-off of midnight and if there were no transport by then I'd stay the night at the hospital. At 23:50 I told the nursing staff that I'd better stay the night as even if transport arrived in the next few minutes I doubt if I'd be able to get to bed at home. I stood my son down and transport was postponed until the next morning. The nurses helped me to get fro the wheelchair onto the bed and to remove my trousers.
I had a surprisingly good nights sleep. The nurse said that transport was rebooked from 08:00. I got my trousers on and waited on the bed. I was pleased that breakfast came before the transport. No sign of the ambulance by mid-morning and I was moved back to the transport lounge where I was fed and watered at lunch time. My mobile phone signal strength was too weak for outgoing calls or texts but I could receive texts from my son (who was working from home). He tried to get the admin of the transfer lounge to order me a wheelchair taxi but despite saying one would be avaiable in five minutes nothing appeared.
Sometime between 16:00 and 16:30 my next door neighbour arrived - she had been at a meeting at the hospital and told my wife she'd find me. She knew one of the admin staff and persuaded her to order a taxi directly (rather than through hospital transport). We were told to meet the taxi at the main entrance. We got there just as the taxi did. Once in the cab, I called my son to make sure he was there to get be into the house and into bed.
A formal complaint to North West Ambulance is being prepared!
On Friday I had a regular meeting with the consultant urologist at Stepping Hill hospital. No transport glitches for this visit. The consultant's clinic was running an hour late. With my PSA rising again he reckons that chemotherapy is the way to go and will refer me to the oncologist. I should get an appointment in the next four weeks.
11 September, 2010
29 August, 2010
Busy week
Last week was a bit hecktic with two visits to hospital.
On Tuesday it was to the Urology department for an infusion of Zometa (zolodronic acid) a bisphosponate to strenthen my bones. I got myself up and dressed early as I was not sure when the ambulance would arrive to take me. It arrived at about 9:25 and delivered me to the Urology department just on my appointment time. I needed a blood test first and the results took a while to appear. The Clinical Nurse Specialst had a problem finding a suitable vein for the canular for the infusion. One of the doctors dealt with it instead. The actual infusion only took about 15 minutes. Due to the delay for the blood test, the ambulance to take me home arrived whilst I was being treated and had to go away again. They returned just as I was being offered a sandwich. The CNS gave me a list of things to be checked on a blood test in the week before the next infusion. The community nurse from the local Health Centre will take the blood.
On Wednesday morning a fellow from Social Services arrived to investigate the options for ramps at one of the entrances. Our preferred option of temporary ramps are not possible because with both the patio and front doors the end of the ramp would end up on grass and there is not enough room at the back door. Each inch of height needs a foot of length. The step up to the back door is 11 inches, so an 11 foot ramp would be needed and the car port is only about 8 foot wide. The other options are a permenant ramp made with concrete or a semi permenant ramp made of metal. In each case there would be a "landing" level with the doorstep to allow the wheelchair to be turned through 90 degrees allowing plenty of room for the ramps. We have decided to take no action at present.
On Thursday afternoon it was Out patients regarding my left elbow. The ambulance arrived early, before 2pm for a 4:15pm appointment. This did not pose a problem because patients arriving by ambulance get treated first. X-rays taken whilst I was in hospital show that there is a tumour on the elbow. The tumour has started to affect the strength of my left hand, particularly the small fingrer and thenext one. The doctors thought they had contacted the oncologist at the Christie about it but as there was no record of them having done so will do so as a matter of urgency. I have another Out patients appointment in six weeks time as a back stop should I hear nothing from the Christie. I will cancel that appointment once I hear from the Christie. There was a bit of a wait for the ambulance home but I was back at about 4:30pm.
On Tuesday it was to the Urology department for an infusion of Zometa (zolodronic acid) a bisphosponate to strenthen my bones. I got myself up and dressed early as I was not sure when the ambulance would arrive to take me. It arrived at about 9:25 and delivered me to the Urology department just on my appointment time. I needed a blood test first and the results took a while to appear. The Clinical Nurse Specialst had a problem finding a suitable vein for the canular for the infusion. One of the doctors dealt with it instead. The actual infusion only took about 15 minutes. Due to the delay for the blood test, the ambulance to take me home arrived whilst I was being treated and had to go away again. They returned just as I was being offered a sandwich. The CNS gave me a list of things to be checked on a blood test in the week before the next infusion. The community nurse from the local Health Centre will take the blood.
On Wednesday morning a fellow from Social Services arrived to investigate the options for ramps at one of the entrances. Our preferred option of temporary ramps are not possible because with both the patio and front doors the end of the ramp would end up on grass and there is not enough room at the back door. Each inch of height needs a foot of length. The step up to the back door is 11 inches, so an 11 foot ramp would be needed and the car port is only about 8 foot wide. The other options are a permenant ramp made with concrete or a semi permenant ramp made of metal. In each case there would be a "landing" level with the doorstep to allow the wheelchair to be turned through 90 degrees allowing plenty of room for the ramps. We have decided to take no action at present.
On Thursday afternoon it was Out patients regarding my left elbow. The ambulance arrived early, before 2pm for a 4:15pm appointment. This did not pose a problem because patients arriving by ambulance get treated first. X-rays taken whilst I was in hospital show that there is a tumour on the elbow. The tumour has started to affect the strength of my left hand, particularly the small fingrer and thenext one. The doctors thought they had contacted the oncologist at the Christie about it but as there was no record of them having done so will do so as a matter of urgency. I have another Out patients appointment in six weeks time as a back stop should I hear nothing from the Christie. I will cancel that appointment once I hear from the Christie. There was a bit of a wait for the ambulance home but I was back at about 4:30pm.
21 August, 2010
Dependancy
Being dependant on others is, I suppose, the main change to my life. I spend most of the day in my wheel chair which allows me a degree of mobility and hence some freedom. Once I transfer to the bed in the evening my options are much more limited. Being dependant upon her has increased the burden upon my wife. It is not easy to judge how big the burden is and I do not want to be, or even appear to be, demanding at all. After all, if things get too much for her it will do neither of us any good. I try to go with the flow and accept what is offered on the basis that she is doing the best that she can with my interests in mind. That is not to say that we necessarily agree about what is in my best interest.
We both also depend upon friends and neighbours for help with shopping and small errands. It is good to know that we have such caring people around us. I also have a carer come for a time in the morning to help me get washed and dressed and to tidy the bed once I've transferred to the wheel chair.
Having access to the internet allows me to to get a fair amount of our grocery shopping on-line as well as some non-grocery stuff. At the moment I am using a laptop lent to me by a friend but I have bought a new one for myself which should be delivered on Monday. The internet is a bit of a lifeline in other ways too. I can keep in touch with family and friends and use on-line forums to extend my (virtual) social life.
I've not been home very long yet so we are still learning and adapting to the new circumstances. No doubt things will get easier over time and the stress on my wife will lessen. I do hope so.
We both also depend upon friends and neighbours for help with shopping and small errands. It is good to know that we have such caring people around us. I also have a carer come for a time in the morning to help me get washed and dressed and to tidy the bed once I've transferred to the wheel chair.
Having access to the internet allows me to to get a fair amount of our grocery shopping on-line as well as some non-grocery stuff. At the moment I am using a laptop lent to me by a friend but I have bought a new one for myself which should be delivered on Monday. The internet is a bit of a lifeline in other ways too. I can keep in touch with family and friends and use on-line forums to extend my (virtual) social life.
I've not been home very long yet so we are still learning and adapting to the new circumstances. No doubt things will get easier over time and the stress on my wife will lessen. I do hope so.
16 August, 2010
New routines
I've been home nearly a week now and new routines are beginning to get sorted out. A carer comes in the morning to make sure I'm up and dressed and to tidy the bed and empty the commode. We've decided that we can manage without the carer in the evening. Making sure I take my medicines at the proper time needs a bit of concentration. Most of them are taken at the same time each morning with a smaller number in the evening but there are a couple that are taken during the day too.
Next week I have two appointments at the hospital. I will be relying on ambulance transport which looks like I'll be spending a lot of time waiting around. Once we have some ramps fitted, I'll have the option of using a wheelchair taxi instead which will be a lot more flexible.
Next week I have two appointments at the hospital. I will be relying on ambulance transport which looks like I'll be spending a lot of time waiting around. Once we have some ramps fitted, I'll have the option of using a wheelchair taxi instead which will be a lot more flexible.
12 August, 2010
Home at last
I came home from the hospital yesterday evening. I'm very impressed with the adjustable bed with an air filled matress. Matt, eldest son, had set it up and put on the sheet and duvet. A carer attends morning and evening. I wasn't sure this would be needed but it is a comfort.
The cat has decided to pretty much ignore me. I'm not sure where he spends the day. It used to be in the corner of the front room, my living quarters now, but not anymore.
The cat has decided to pretty much ignore me. I'm not sure where he spends the day. It used to be in the corner of the front room, my living quarters now, but not anymore.
17 July, 2010
SCC again!
After a couple of falls during the week and my legs collapsing under me on Wednesday last it was obvious my legs were getting rapidly weaker. So I contacted the Macmillan nurse to say I was worried that the weakness might be caused by spinal chord compression (SCC). She contacted the palliative care consultant and a GP at the health centre. Between them they decided I should go to A&E to get it checked out. The GP organised an ambulance to take me.
After a thorough examination the A&E doctor agreed that SCC looked very likely and managed to arrange an MRI scan that afternoon for confirmation. The scan showed that there were areas above and below where the last SCC was that looked suspicious. The doctor than arranged for palliative radio therapy to the spine to be given the next day at the Christie hospital and I was admitted to Stepping Hill.
I'd had attended the oncologist's clinic on the 6th July and had mentioned the leg weakness to the doctor that saw me (not the actual consultant). She gave me a brief examination but did not hint at the possibility of SCC being a possible cause. I find that disappointing because if SCC had been checked out then there would have been a better prognosis as the SCC would not have been so severe.
I was transferred to the Christie after breakfast. As there were two places on the spine to treat it was not initially clear whether both places could be done on the same day or whether I'd need to stay at the Christie overnight and have the second place done the next day. In the event both sites were treated that afternoon and (after a long wait) I was transferred back to Stepping Hill.
After a good night's sleep Thursday night, I awoke on the Friday morning to find that I had recovered some strength and movement in my legs. So the RT and steroid medicine had had an effect. Good oh! Later that morning I had a chat with a physiotherapist and occupational therapist. I was able to demonstrate that I could transfer from the bed to the bedside chair with the use of a walker for support. So my legs can support me again with help from my arms, although going any distance with the walker is probably not on yet. The OT measured me up for a wheelchair. She will also make a home visit to see what else might be needed before it would be safe for me to go home.
It looks like I will be in Stepping Hill for a few more days. The ward doctor has arranged for the spinal specialist to see me, probably after the weekend. Hopefully the specialist will be able to tell me how much more, if any, improvement I'm likely to see. I shall then be able to plan accordingly. As things are at the moment my wife will have more to do to look after me and my mobility will be more restricted.
After a thorough examination the A&E doctor agreed that SCC looked very likely and managed to arrange an MRI scan that afternoon for confirmation. The scan showed that there were areas above and below where the last SCC was that looked suspicious. The doctor than arranged for palliative radio therapy to the spine to be given the next day at the Christie hospital and I was admitted to Stepping Hill.
I'd had attended the oncologist's clinic on the 6th July and had mentioned the leg weakness to the doctor that saw me (not the actual consultant). She gave me a brief examination but did not hint at the possibility of SCC being a possible cause. I find that disappointing because if SCC had been checked out then there would have been a better prognosis as the SCC would not have been so severe.
I was transferred to the Christie after breakfast. As there were two places on the spine to treat it was not initially clear whether both places could be done on the same day or whether I'd need to stay at the Christie overnight and have the second place done the next day. In the event both sites were treated that afternoon and (after a long wait) I was transferred back to Stepping Hill.
After a good night's sleep Thursday night, I awoke on the Friday morning to find that I had recovered some strength and movement in my legs. So the RT and steroid medicine had had an effect. Good oh! Later that morning I had a chat with a physiotherapist and occupational therapist. I was able to demonstrate that I could transfer from the bed to the bedside chair with the use of a walker for support. So my legs can support me again with help from my arms, although going any distance with the walker is probably not on yet. The OT measured me up for a wheelchair. She will also make a home visit to see what else might be needed before it would be safe for me to go home.
It looks like I will be in Stepping Hill for a few more days. The ward doctor has arranged for the spinal specialist to see me, probably after the weekend. Hopefully the specialist will be able to tell me how much more, if any, improvement I'm likely to see. I shall then be able to plan accordingly. As things are at the moment my wife will have more to do to look after me and my mobility will be more restricted.
11 July, 2010
Ooops
I missed out an important piece of information - PSA count is down from 236 to 156. So the revised hormone therapy seems to be working.
Too long
I have left it far too long since the last entry. It always seemed like it would be worth waiting a day or two to include something extra. A big mistake. Now I don't remember all that I was going to include and will be summarising stuff as well as I can.
I had another meeting with the palliative care consultant. He tweaked my pain killers a bit - cutting out the patch and doubling the dose of the Oxycontin. This led to a problem with the repeat prescription for the latter - too soon since the last one. I had to ring the health centre to remind them that the dose had been doubled (they had been advised) and to their credit the problem was quickly resolved. We decided that for the time being it would be best for the MacMillan nurse to monitor my pain management only including the palliative care consultant if needed.
I also had an appointment at the oncology department but I saw a registrar rather than the consultant. I told her that the requested palliative radiation to my right buttock bone would not be needed as the pain killers had removed the problem. Next appointment in six months.
A couple of weeks ago I had problems with my water works again. I was needing to pass water every 45-60 minutes but only managed a short trickle. I had a very poor Thursday night and saw the emergency doctor Friday afternoon. He prescribed Tamsulosin hydrochloride which seems to have sorted out both the flow and frequency problems. A potential side-effect is fluid retention in the bladder after a while.
Although my pain is under control and I am getting better night's sleep my legs seem to be getting weaker. My mobility is even more restricted. I'm even thinking in terms of a zimmer frame! Certainly I'll be looking out for a riser chair as getting up from the sofa, even with an extra cushion, is getting harder.
I started on an eight week course at a local cancer support centre - Beechwood - on Thursday. If nothing else it gets me out of the house meeting people and gives Julie some time to herself. Looking forward to the next meeting.
I had another meeting with the palliative care consultant. He tweaked my pain killers a bit - cutting out the patch and doubling the dose of the Oxycontin. This led to a problem with the repeat prescription for the latter - too soon since the last one. I had to ring the health centre to remind them that the dose had been doubled (they had been advised) and to their credit the problem was quickly resolved. We decided that for the time being it would be best for the MacMillan nurse to monitor my pain management only including the palliative care consultant if needed.
I also had an appointment at the oncology department but I saw a registrar rather than the consultant. I told her that the requested palliative radiation to my right buttock bone would not be needed as the pain killers had removed the problem. Next appointment in six months.
A couple of weeks ago I had problems with my water works again. I was needing to pass water every 45-60 minutes but only managed a short trickle. I had a very poor Thursday night and saw the emergency doctor Friday afternoon. He prescribed Tamsulosin hydrochloride which seems to have sorted out both the flow and frequency problems. A potential side-effect is fluid retention in the bladder after a while.
Although my pain is under control and I am getting better night's sleep my legs seem to be getting weaker. My mobility is even more restricted. I'm even thinking in terms of a zimmer frame! Certainly I'll be looking out for a riser chair as getting up from the sofa, even with an extra cushion, is getting harder.
I started on an eight week course at a local cancer support centre - Beechwood - on Thursday. If nothing else it gets me out of the house meeting people and gives Julie some time to herself. Looking forward to the next meeting.
30 May, 2010
It's all happening!
So much seems to have happened since the last post.
Last Tuesday I had a visit from a MacMillan nurse which was very useful. She had some practical advice about my pain management - take the paracetamol and ibuprofen regularly whether I seem to need it or not. She also wrote to my GP suggesting that they prescribe Oxynorm as a breakthrough pain killer for when the other pain killers are not working and another medicine (can't remember its name) to protect my stomach from the effects of daily doses of aspirin and ibuprofen. She also told me that I should be eligible for attendance allowance (incorrect) and a blue (disabled) badge for use in the car. I told her that the urologist was going to refer me to the palliative car consultant and she said she would expedite that as the consultant and the MacMillan nurses work closely together (a later 'phone call confirmed a meeting with the palliative care consultant a couple of days later). She will 'phone me after the bank holiday weekend to see how things were going.
On Thursday morning I had a call from the village pharmacy (which is authorised to collect and deliver my prescriptions) to say that they'd collected a prescription from the health centre but two items had been turned down (by a GP at the health centre) because they were "not on the computer" for me. These items were the Oxynorm and the stomach medicine! Wonderful! At first I was not too worried because my pain was more or less under control, but see below.
The meeting with the palliative care consultant was was also useful. He had to hand both my hospital notes (quite a thick wad now) and the notes made by the MacMillan nurse. Whilst in his consulting room I began to feel sick and was able to ask for a bowl before puking up some of my lunch. He took the opportunity, whilst I was otherwise engaged, to read through my answers to a questionnaire left for me to fill in by the MacMillan nurse. He said he would write (and fax) a letter to my GP at the health centre emphasising that I should have the medicines so far denied me. He will also appraise the urologist and oncologist of the outcome of our meeting. We will have a follow-up meeting mid June.
On the Friday I had a call from the welfare rights team based at the same cancer day centre (the Beechwood Centre) as the Macmillan nurses. I was told that I may be eligible to disabled living allowance (not attendance allowance which is only available to people in receipt of state pension) and, if so, my wife will probably be entitled to carers allowance. I was told to hold onto the blue badge application for now because, if I get the allowance, the blue badge application will be dealt with a lot quicker.
I had a bad time Friday night and Saturday morning with persistent pain (my guess is that the morphine patch only lasted 6.5 days rather than the full 7). So I 'phoned the pharmacy to check whether there had been any more prescriptions for me and was told there had not. So I called the out of hours doctor service to see what could be done. Having taken some details the call answerer told me that a doctor would call me back in about 20 minutes. Whilst I was waiting for that call, the pharmacy rang to say that there was a prescription after all and they could dispense it. So I called the out of hours service again to say that I would not need the doctor after all. My neighbour Frank took me down to the pharmacy. I'm not clear whether there was actually a new prescription or whether the pharmacist dispensed the Oxycorm based on the "refused" script. Anyway I had the medicine.
During Saturday I took three doses of the Oxynorm and had a good night's sleep. Today, Sunday, I have been pretty much pain free but tired. Perhaps the doses of Oxycorm in some way boosted the effects of the morphine patch or just has a longer effective period with multiple doses. Whatever, a good day pain wise and hopefully a good night to follow.
Last Tuesday I had a visit from a MacMillan nurse which was very useful. She had some practical advice about my pain management - take the paracetamol and ibuprofen regularly whether I seem to need it or not. She also wrote to my GP suggesting that they prescribe Oxynorm as a breakthrough pain killer for when the other pain killers are not working and another medicine (can't remember its name) to protect my stomach from the effects of daily doses of aspirin and ibuprofen. She also told me that I should be eligible for attendance allowance (incorrect) and a blue (disabled) badge for use in the car. I told her that the urologist was going to refer me to the palliative car consultant and she said she would expedite that as the consultant and the MacMillan nurses work closely together (a later 'phone call confirmed a meeting with the palliative care consultant a couple of days later). She will 'phone me after the bank holiday weekend to see how things were going.
On Thursday morning I had a call from the village pharmacy (which is authorised to collect and deliver my prescriptions) to say that they'd collected a prescription from the health centre but two items had been turned down (by a GP at the health centre) because they were "not on the computer" for me. These items were the Oxynorm and the stomach medicine! Wonderful! At first I was not too worried because my pain was more or less under control, but see below.
The meeting with the palliative care consultant was was also useful. He had to hand both my hospital notes (quite a thick wad now) and the notes made by the MacMillan nurse. Whilst in his consulting room I began to feel sick and was able to ask for a bowl before puking up some of my lunch. He took the opportunity, whilst I was otherwise engaged, to read through my answers to a questionnaire left for me to fill in by the MacMillan nurse. He said he would write (and fax) a letter to my GP at the health centre emphasising that I should have the medicines so far denied me. He will also appraise the urologist and oncologist of the outcome of our meeting. We will have a follow-up meeting mid June.
On the Friday I had a call from the welfare rights team based at the same cancer day centre (the Beechwood Centre) as the Macmillan nurses. I was told that I may be eligible to disabled living allowance (not attendance allowance which is only available to people in receipt of state pension) and, if so, my wife will probably be entitled to carers allowance. I was told to hold onto the blue badge application for now because, if I get the allowance, the blue badge application will be dealt with a lot quicker.
I had a bad time Friday night and Saturday morning with persistent pain (my guess is that the morphine patch only lasted 6.5 days rather than the full 7). So I 'phoned the pharmacy to check whether there had been any more prescriptions for me and was told there had not. So I called the out of hours doctor service to see what could be done. Having taken some details the call answerer told me that a doctor would call me back in about 20 minutes. Whilst I was waiting for that call, the pharmacy rang to say that there was a prescription after all and they could dispense it. So I called the out of hours service again to say that I would not need the doctor after all. My neighbour Frank took me down to the pharmacy. I'm not clear whether there was actually a new prescription or whether the pharmacist dispensed the Oxycorm based on the "refused" script. Anyway I had the medicine.
During Saturday I took three doses of the Oxynorm and had a good night's sleep. Today, Sunday, I have been pretty much pain free but tired. Perhaps the doses of Oxycorm in some way boosted the effects of the morphine patch or just has a longer effective period with multiple doses. Whatever, a good day pain wise and hopefully a good night to follow.
22 May, 2010
More progress
I saw a GP eight or nine days ago about pain management. She put me on the lowest dose morphine patch which was an improvement but still not really adequate. I saw her again a week later and am now on the next strongest patch (twice the dose of the first one) which seem to do the trick. Only down side is the side effect of some sickness which should be controllable if I can take the anti-emetic tablets at the optimum times.
On Thursday I had an appointment with the urologist. This turned out to be quite useful. He has agreed to write to the oncologist requesting palliative radiotherapy to the pelvic bones, on my right side, that take my weight when sitting because of the discomfort and pain that results. An X-ray of my pelvis will be needed first but will have to wait until the next day as the X-ray department was closed (evening appointment). He also suggested that he refer me to a palliative care consultant and I agreed to this. He had written to me suggesting that I get my GP to prescribe Diethyl Stiboestrol 3mg. I told him that the oncologist had already put me on 1mg dose of the medicine, I asked whether I should change to the 3mg version. He told me that there was no convincing evidence to show that either dose is better than the other. He just prefers the bigger dose.
On Thursday I had an appointment with the urologist. This turned out to be quite useful. He has agreed to write to the oncologist requesting palliative radiotherapy to the pelvic bones, on my right side, that take my weight when sitting because of the discomfort and pain that results. An X-ray of my pelvis will be needed first but will have to wait until the next day as the X-ray department was closed (evening appointment). He also suggested that he refer me to a palliative care consultant and I agreed to this. He had written to me suggesting that I get my GP to prescribe Diethyl Stiboestrol 3mg. I told him that the oncologist had already put me on 1mg dose of the medicine, I asked whether I should change to the 3mg version. He told me that there was no convincing evidence to show that either dose is better than the other. He just prefers the bigger dose.
04 May, 2010
More Hormone Treatment
I saw the oncologist this afternoon. PSA count is up again at 236. Red blood count is up too at 82 from 79. The oncologist has added Diethylstilbestrol 1mg to my treatment. Diethylstilbestrol is a synthetic non-steroidal oestrogen hormone. A potential side effect is blood clots so I will also be taking 75mg Aspirin tablets as well.
The oncologist has also arranged for me to have a couple of units of blood on Thursday at the Christie Hospital. Blood transfusions are done very slowly so I'll probably be at the hospital until at least mid afternoon. The purpose of the blood transfusion is to get me fit as soon as possible so that if chemotherapy is needed in a couple of months time [Diethylstilbestrol is having no effect] I can be as fit as possible. I'm in no fit state to tolerate chemotherapy at the moment.
I am content with the oncologist's decisions as it fits in with what I would have wanted.
The oncologist has also arranged for me to have a couple of units of blood on Thursday at the Christie Hospital. Blood transfusions are done very slowly so I'll probably be at the hospital until at least mid afternoon. The purpose of the blood transfusion is to get me fit as soon as possible so that if chemotherapy is needed in a couple of months time [Diethylstilbestrol is having no effect] I can be as fit as possible. I'm in no fit state to tolerate chemotherapy at the moment.
I am content with the oncologist's decisions as it fits in with what I would have wanted.
26 April, 2010
Anaemia
Another interesting weekend! I was very sick at about 05:30 on Thursday morning. This was followed by diarrhoea. As this was still around on the Saturday I gave the emergency doctor a ring. He noted that I seemed to be short of breath and after a few questions about this said I needed to get to A&E and that the safest thing would be to call 999. This I did.
The paramedics did some tests then took me to the hospital. My friend Derek met us there. Further tests - ECG, bloods, BP. The blood tests showed that I am anaemic a count of 79 rather than 100. Not bad enough for a blood transfusion but iron tablets will be appropriate. I think they were about to let me go home but first decided that a standing BP check should be done first. The standing BP level was a good deal lower than that taken lying down so I was admitted for observation. Because of the diarrhoea I was put in a room by myself.
A doctor that came round in the evening told me that I had been anaemic on 31st March. I don't remember anyone telling me this. This would have been after the operation to put the "nail" in my femur. A couple of bowel movements before 07:00 on the Sunday morning were loose but not liquid. The doctor came round at about 10:00. He said that If I was free of diarrhoea by 17:00 I would be free to go home. My son Andy brought in my glasses and a newspaper and my neighbour Frank visited in the afternoon. There were no further bowel movement up to 17:00 and I was free to go. Andy came to collect me.
Wouldn't you just know it that the diarrhoea returned later in the evening! I spoke to a doctor from the local health centre to talk about what I should eat and what I should avoid. It boils down to keeping clear of good diet - fruit, vegetables wholemeal bread, anything with fibre and to eat fish chicken and white bread. So far today I have been clear since about 09:00 this morning.
I want to thank my neighbours Frank and his wife Beryl and Renata for their kind help over the last few weeks along with my friend Derek and his wife Judy.
The paramedics did some tests then took me to the hospital. My friend Derek met us there. Further tests - ECG, bloods, BP. The blood tests showed that I am anaemic a count of 79 rather than 100. Not bad enough for a blood transfusion but iron tablets will be appropriate. I think they were about to let me go home but first decided that a standing BP check should be done first. The standing BP level was a good deal lower than that taken lying down so I was admitted for observation. Because of the diarrhoea I was put in a room by myself.
A doctor that came round in the evening told me that I had been anaemic on 31st March. I don't remember anyone telling me this. This would have been after the operation to put the "nail" in my femur. A couple of bowel movements before 07:00 on the Sunday morning were loose but not liquid. The doctor came round at about 10:00. He said that If I was free of diarrhoea by 17:00 I would be free to go home. My son Andy brought in my glasses and a newspaper and my neighbour Frank visited in the afternoon. There were no further bowel movement up to 17:00 and I was free to go. Andy came to collect me.
Wouldn't you just know it that the diarrhoea returned later in the evening! I spoke to a doctor from the local health centre to talk about what I should eat and what I should avoid. It boils down to keeping clear of good diet - fruit, vegetables wholemeal bread, anything with fibre and to eat fish chicken and white bread. So far today I have been clear since about 09:00 this morning.
I want to thank my neighbours Frank and his wife Beryl and Renata for their kind help over the last few weeks along with my friend Derek and his wife Judy.
15 April, 2010
PSA up again
Well it looks as though the second line hormone treatment has been unsuccessful. I had a PSA test on Tuesday and received the results today. The PSA count is now up to 224.2. Very disappointing, especially with the effect the extra treatment has had on me. I don't have an appointment with the urologist until 7th May but am minded to write to him about stopping the second line hormone treatment.
11 April, 2010
Tiredness
Where has it come from? Is it down to the second line hormone therapy [Bicalutamide] or the radiotherapy? Is it just the cancer in my bones? Probably it is a combination of them all. Whatever the reasons I'm shattered. All I want to do is rest. Small exertions leave me breathless. It is so frustrating. I hate it.
The radiotherapy ended last Thursday and I saw the oncologist on Wednesday. We decided to leave the next dose of Zometa for another four weeks to allow my bones to heal. At the end of the month I will be having a single dose of palliative radiation to the lesion on my right thigh. The dressings on my leg were changed on Friday and the wounds are healing well.
The bone pain that was dealt with by the first dose of Zometa is returning so I have had to up the pain killers. The numbness in my right lower leg is still there, along with, I think, oedema which has made it stiff as well. I have had a couple of good night's sleep which has helped.
I need to arrange a PSA test before I see the Urologist at the beginning of May.
The radiotherapy ended last Thursday and I saw the oncologist on Wednesday. We decided to leave the next dose of Zometa for another four weeks to allow my bones to heal. At the end of the month I will be having a single dose of palliative radiation to the lesion on my right thigh. The dressings on my leg were changed on Friday and the wounds are healing well.
The bone pain that was dealt with by the first dose of Zometa is returning so I have had to up the pain killers. The numbness in my right lower leg is still there, along with, I think, oedema which has made it stiff as well. I have had a couple of good night's sleep which has helped.
I need to arrange a PSA test before I see the Urologist at the beginning of May.
03 April, 2010
Home again
I went into the hospital last Monday afternoon for the thigh operation on the Tuesday. The operation went well and the thigh pain has gone. I'm already up and about. I have been provided with a stick but don't need it all of the time. My main problem with walking is the numbness in my right foot is my main impediment to walking now.
My meeting with the oncologist on Thursday didn't happen. I was not given an appointment for his clinic so expected him to visit me at my bed. This did not happen despite prompts from the ward nurses. The numbness in my foot had spread from the toes to above my ankle and as I believed this to be a result of the spinal cord compression (SCC) I wanted attention to this problem to be dealt with promptly. The hospital based MacMillan nurse and one of the orthopaedic team doctors contacted another oncologist at the Christie hospital. He checked the MRI scan and booked me in for attention the next day.
I was ready for transporting to the Christie at 07:00 as requested but was not actually moved until 08:45. The appointment at the Christie was at 09:15 and I arrived at the Radiation reception at 09:10. I did not actually get seen until about 10:45. I was checked over and quizzed by on of the oncologist team members and later by a consultant. It was decided that as I was mobile I'd have four radiation treatment instead of just one. I assume that the four treatments will be at lower power to reduce and side effects. The consultant did not think that the numbness in my right foot is associated with the SCC as he'd expect the SCC to affect both lower limbs. Thus the finding of the SCC has been rather serendipitous and caught early. This is good because the radiation treatment will stop the SCC getting worse but will not reverse it. I was then marked up for the treatment and dosed with steroids and anti-sickness medicine before receiving the treatment. Once those had been given time to take effect I was the given the first session of radiation treatment. The next three will be given on Tuesday, Wednesday and Thursday next week.
I was then transported back to the local hospital. I'd now missed lunch but the nurses sent down for a cool bag - sandwich plus some odds and ends. The nurses checked with the doctor and it was agreed that I could go home once the new medications had been sorted. These new medications are a stronger steroid plus different steroids and anti sickness medicine to be taken before each radiation session. I was given the first dose of the steroid and another dose for today. The sister said she'd make out a prescription for the rest and send it to the pharmacy for collection today. As of this morning she had not done so but it is with the pharmacy now and should be back to the ward soon.
Edit: Son was able to pick up the medicines this afternoon
Apart from the blip with the medicines Things are looking pretty good. I'm not sure what will be happening with the Zometa infusions because Zometa can slow down bone healing and my thigh needs to heal. No doubt I'll find out soon. I want the Zometa treatment so start off again as soon as it is safe to do so. I don't want the bone pain to come back.
My meeting with the oncologist on Thursday didn't happen. I was not given an appointment for his clinic so expected him to visit me at my bed. This did not happen despite prompts from the ward nurses. The numbness in my foot had spread from the toes to above my ankle and as I believed this to be a result of the spinal cord compression (SCC) I wanted attention to this problem to be dealt with promptly. The hospital based MacMillan nurse and one of the orthopaedic team doctors contacted another oncologist at the Christie hospital. He checked the MRI scan and booked me in for attention the next day.
I was ready for transporting to the Christie at 07:00 as requested but was not actually moved until 08:45. The appointment at the Christie was at 09:15 and I arrived at the Radiation reception at 09:10. I did not actually get seen until about 10:45. I was checked over and quizzed by on of the oncologist team members and later by a consultant. It was decided that as I was mobile I'd have four radiation treatment instead of just one. I assume that the four treatments will be at lower power to reduce and side effects. The consultant did not think that the numbness in my right foot is associated with the SCC as he'd expect the SCC to affect both lower limbs. Thus the finding of the SCC has been rather serendipitous and caught early. This is good because the radiation treatment will stop the SCC getting worse but will not reverse it. I was then marked up for the treatment and dosed with steroids and anti-sickness medicine before receiving the treatment. Once those had been given time to take effect I was the given the first session of radiation treatment. The next three will be given on Tuesday, Wednesday and Thursday next week.
I was then transported back to the local hospital. I'd now missed lunch but the nurses sent down for a cool bag - sandwich plus some odds and ends. The nurses checked with the doctor and it was agreed that I could go home once the new medications had been sorted. These new medications are a stronger steroid plus different steroids and anti sickness medicine to be taken before each radiation session. I was given the first dose of the steroid and another dose for today. The sister said she'd make out a prescription for the rest and send it to the pharmacy for collection today. As of this morning she had not done so but it is with the pharmacy now and should be back to the ward soon.
Edit: Son was able to pick up the medicines this afternoon
Apart from the blip with the medicines Things are looking pretty good. I'm not sure what will be happening with the Zometa infusions because Zometa can slow down bone healing and my thigh needs to heal. No doubt I'll find out soon. I want the Zometa treatment so start off again as soon as it is safe to do so. I don't want the bone pain to come back.
25 March, 2010
Operation needed.
The X-ray of my right femur on Tuesday showed the presence of a tumour which is weakening the bone. The plan is to put a "nail" down the middle of the bone to strengthen it. They want me to go in on Monday and I'll be in the hospital for most of the week.
I'll see the oncologist in his clinic next Thursday to discuss radiation treatment to the tumour in my spine that is pressing on the spinal chord. If I'm still recovering he'll come to my bedside apparently.
It'll be another busy week. I just hope the pain gets sorted.
I'll see the oncologist in his clinic next Thursday to discuss radiation treatment to the tumour in my spine that is pressing on the spinal chord. If I'm still recovering he'll come to my bedside apparently.
It'll be another busy week. I just hope the pain gets sorted.
24 March, 2010
Ouch
Yesterday I was due to have my second Zometa infusion. This time I drove to the hospital because my right leg had been playing up and I wasn't sure I could manage to walk the 2+ miles. I couldn't find a parking place so drove about half a mile home and walked (hobbled) in from there and arrived with 5 minutes to spare.
It was a different Clinical Nurse Specialist who was to give me the medicine this time. She asked me how things were going. I told her that my bone pain had generally reduced but that I was getting sciatica like pain in the right leg and the three smaller toes on my right foot were somewhat numb. She pricked her ears up at this and said she'd get a doctor to check me over.
The doctor asked some questions then examined me. He checked whether touch sensations on the right leg were the same as the left. Then he checked on the strength of each leg and it was plain that the right leg was weaker. He also prodded my lower abdomen and gave me a DRE (digital rectal examination). He said there was a possibility that I had some spinal cord compression and would need an MRI scan. He said he'd admit me into the hospital until a scan could be arranged - probably the next day.
As it happened there was a slot available and I was taken in a wheelchair, pushed by a porter, and accompanied by the CNS to the MRI department. The scan was uneventful but the hard scanner bed was uncomfortable and I had to grit my teeth a few times so that I didn't move to relieve the discomfort and pain. After waiting a while for a porter the CNS wheeled me back to the urology department. It was now lunch time and the CNS rustled up a large salad filled bap for me.
Having examined the scan results the doctor confirmed that there was some SCC and arranged for me to be seen by and orthopaedic consultant in his out patients clinic. The CNS had to leave to make some home calls so a different nurse accompanied my to the out patients clinic whilst I travelled in style in the porter pushed wheelchair.
There was some confusion at the clinic because the arrangement had been made directly with the consultant and the receptionists didn't have me on their lists. I was first seen by a registrar who asked similar questions to those posed by the doctor in the urology department. He checked out each of my vertebra. The only one that gave me any pain was the one between my shoulder blades (I suspect this is the cause of some weakness in my arms). He then checked out my legs. The consultant joined him and told me that the Multi-Disciplinary Team would meet tomorrow (Wednesday) to discuss how to proceed, the options being an operation or a single dose of radiotherapy. Seeing as I was passing water and moving my bowels OK he didn't see the need for me to be admitted but before going home he wanted me to have an X-ray of my right femur. A nurse will call me on Thursday morning to let me know what the MDT had decided and what I will need to do.
So another wheelchair ride to the X-Ray department. A bit of a wait then a walk (hobble) back to the car and home. The longish walk to the car made the wheelchair rides seem unnecessary but I am pleased they were provided. Walking between the various departments would have been slower and may have left me with some difficulty getting back to the car.
I'll be pleased when the SCC gets sorted because the pain it causes is worse when I have been sitting or lying down for a while and the various pain killers I have don't seem to have much effect. Consequently I have not been getting much sleep nor even very much rest.
I've just had a 'phone call from the CNS asking how I had got on with the orthopaedic guys and whether I am OK. Isn't that nice?
It was a different Clinical Nurse Specialist who was to give me the medicine this time. She asked me how things were going. I told her that my bone pain had generally reduced but that I was getting sciatica like pain in the right leg and the three smaller toes on my right foot were somewhat numb. She pricked her ears up at this and said she'd get a doctor to check me over.
The doctor asked some questions then examined me. He checked whether touch sensations on the right leg were the same as the left. Then he checked on the strength of each leg and it was plain that the right leg was weaker. He also prodded my lower abdomen and gave me a DRE (digital rectal examination). He said there was a possibility that I had some spinal cord compression and would need an MRI scan. He said he'd admit me into the hospital until a scan could be arranged - probably the next day.
As it happened there was a slot available and I was taken in a wheelchair, pushed by a porter, and accompanied by the CNS to the MRI department. The scan was uneventful but the hard scanner bed was uncomfortable and I had to grit my teeth a few times so that I didn't move to relieve the discomfort and pain. After waiting a while for a porter the CNS wheeled me back to the urology department. It was now lunch time and the CNS rustled up a large salad filled bap for me.
Having examined the scan results the doctor confirmed that there was some SCC and arranged for me to be seen by and orthopaedic consultant in his out patients clinic. The CNS had to leave to make some home calls so a different nurse accompanied my to the out patients clinic whilst I travelled in style in the porter pushed wheelchair.
There was some confusion at the clinic because the arrangement had been made directly with the consultant and the receptionists didn't have me on their lists. I was first seen by a registrar who asked similar questions to those posed by the doctor in the urology department. He checked out each of my vertebra. The only one that gave me any pain was the one between my shoulder blades (I suspect this is the cause of some weakness in my arms). He then checked out my legs. The consultant joined him and told me that the Multi-Disciplinary Team would meet tomorrow (Wednesday) to discuss how to proceed, the options being an operation or a single dose of radiotherapy. Seeing as I was passing water and moving my bowels OK he didn't see the need for me to be admitted but before going home he wanted me to have an X-ray of my right femur. A nurse will call me on Thursday morning to let me know what the MDT had decided and what I will need to do.
So another wheelchair ride to the X-Ray department. A bit of a wait then a walk (hobble) back to the car and home. The longish walk to the car made the wheelchair rides seem unnecessary but I am pleased they were provided. Walking between the various departments would have been slower and may have left me with some difficulty getting back to the car.
I'll be pleased when the SCC gets sorted because the pain it causes is worse when I have been sitting or lying down for a while and the various pain killers I have don't seem to have much effect. Consequently I have not been getting much sleep nor even very much rest.
I've just had a 'phone call from the CNS asking how I had got on with the orthopaedic guys and whether I am OK. Isn't that nice?
06 March, 2010
Progress and a blockage
The busy week went well. Prostap injection Monday - no problems. Zometa infusion Tuesday- quite a pleasant experience, in as much as having a needle stuck in you can be pleasant. The infusion was done in one of the nurses' offices. I was sat in a comfortable reclining armchair and provided with a cup of tea whilst the Zometa was fed into my vein. Listening to and chatting with the nurses was a bonus.
On the Wednesday I received a letter telling me I had an appointment with the Oncologist on the multi-disciplinary team (I'd actually asked to see a different one, but never mind). The Oncologist was the one I was initially referred to for post operative treatment for my testicular cancer back in 2007, and I was pleased he remembered me. I learnt from him that the reason I am ineligible for clinical trials is that I have already had, and been treated for cancer. If the Bicalutamide (Casodex) treatment does not bring down my PSA or stops being effective later, then the next treatment to be tried will be oestrogen, followed by chemotherapy. He didn't think that the newer treatments - Arbiterone and Alpharadin - will be licensed for a year or two and will need to be OKed by NICE before they become available. Pretty much as I expected really. I'll have a PSA test at the same time as the blood tests that have to be done before each Zometa infusion in April. This should also fit in with the annual blood tests regarding my high blood pressure - not high at the moment the pills are working. The car had its service and passed its MOT that day too.
On the following Saturday I met up with some on-line friends from the FiftyPlusForum in Altrincham for a chat and a meal. It was good to actually meet some of the people I'd been exchanging messages with over the last year or so. I enjoyed the chatting and meal but the enjoyment was reduced a bit by a persistent pain in my right leg. That pain usually responds to a combination of Ibuprofen and Paracetemol (or Co-Codamol) but not that day.
The pain eased over the rest of the weekend but a side effect of the pain killers cut in - constipation. So on the Monday I made an appointment to see a GP on the Tuesday. He provided me with a couple of stronger pain killers for when needed (like on Saturday) and a couple of laxative options to try. The laxative, Movicol, did its work in as much as the backlog wanted to budge but couldn't get past my piles. After a few fruitless attempts at moving my bowels my wife 'phoned the pharmacy to ask if they had any suggestions. They said that I'd need to see a doctor who may arrange for the district nurse to sort me out (probably with an enema I suppose). I got an emergency appointment for later in the afternoon. Before then, however, the piles were breached and my bowels evacuated. Hurray. I saw the doctor anyway and he advised me to continue with the laxatives and aim to keep the stools soft. He prescribed a cream for the piles on the basis that it would have an anaesthetic effect and reduce pain but he doubted whether such creams do anything else worthwhile.
As of now the Zometa seems to be beginning to work in as much as I have less bone pain and have cut down on the pain killers. The constipation hasn't gone though and the laxative does not seem to be working. I'll have to up the dose a bit. Another good thing is that I have lost about half a stone over the last few weeks, shame my belly seems to have got bigger though.
On the Wednesday I received a letter telling me I had an appointment with the Oncologist on the multi-disciplinary team (I'd actually asked to see a different one, but never mind). The Oncologist was the one I was initially referred to for post operative treatment for my testicular cancer back in 2007, and I was pleased he remembered me. I learnt from him that the reason I am ineligible for clinical trials is that I have already had, and been treated for cancer. If the Bicalutamide (Casodex) treatment does not bring down my PSA or stops being effective later, then the next treatment to be tried will be oestrogen, followed by chemotherapy. He didn't think that the newer treatments - Arbiterone and Alpharadin - will be licensed for a year or two and will need to be OKed by NICE before they become available. Pretty much as I expected really. I'll have a PSA test at the same time as the blood tests that have to be done before each Zometa infusion in April. This should also fit in with the annual blood tests regarding my high blood pressure - not high at the moment the pills are working. The car had its service and passed its MOT that day too.
On the following Saturday I met up with some on-line friends from the FiftyPlusForum in Altrincham for a chat and a meal. It was good to actually meet some of the people I'd been exchanging messages with over the last year or so. I enjoyed the chatting and meal but the enjoyment was reduced a bit by a persistent pain in my right leg. That pain usually responds to a combination of Ibuprofen and Paracetemol (or Co-Codamol) but not that day.
The pain eased over the rest of the weekend but a side effect of the pain killers cut in - constipation. So on the Monday I made an appointment to see a GP on the Tuesday. He provided me with a couple of stronger pain killers for when needed (like on Saturday) and a couple of laxative options to try. The laxative, Movicol, did its work in as much as the backlog wanted to budge but couldn't get past my piles. After a few fruitless attempts at moving my bowels my wife 'phoned the pharmacy to ask if they had any suggestions. They said that I'd need to see a doctor who may arrange for the district nurse to sort me out (probably with an enema I suppose). I got an emergency appointment for later in the afternoon. Before then, however, the piles were breached and my bowels evacuated. Hurray. I saw the doctor anyway and he advised me to continue with the laxatives and aim to keep the stools soft. He prescribed a cream for the piles on the basis that it would have an anaesthetic effect and reduce pain but he doubted whether such creams do anything else worthwhile.
As of now the Zometa seems to be beginning to work in as much as I have less bone pain and have cut down on the pain killers. The constipation hasn't gone though and the laxative does not seem to be working. I'll have to up the dose a bit. Another good thing is that I have lost about half a stone over the last few weeks, shame my belly seems to have got bigger though.
15 February, 2010
More treatment.
On Saturday 6th February I received a copy of a letter from the Urologist to my GP telling him that as per his letter sent in November after he received my PSA results I should now be put on Casodex (Bicalutamide) 150mg daily. I had not received a copy of that letter. Had I known its contents I would have pushed for the Casodex at my last appointment. On Monday 8th February I got an appointment with one of the GPs at the Health Centre to get a prescription for the Casodex. She checked my file and told me that a prescription had been made out on Friday when they had received the letter from the Urologist I would be able to pick it up at reception. Full marks to the Health Centre for preparing the prescription promptly but less than full marks for not letting me know they had done so. As the letter had been copied to me, they probably assumed that I knew a prescription would be ready.
On Friday 12th February I had a meeting with the Urologist. He seemed a bit surprised that I'd only been taking the Casodex since the Monday. I asked him for a testosterone check. He wasn't sure it was really needed but understood my reasoning for asking and agreed to it. He said that if the reading was not as low as it should be with the hormone treatment the next logical step would be a radical orchidectomy to remove my remaining testicle. I didn't argue but I'm pretty sure that there are other options available before that. I also asked that I be given Zometa (Zelodronic Acid), a bisphosphonate, to strengthen my bones which will have been weakened by both the cancer and the hormone treatment. He agreed to this and arranged for a blood test to check that I am in a fit state to receive it and at the same time extra blood was taken for the testosterone check. I was given a prescription for calcium supplements to be dispensed at the hospital, a letter for the Health Centre so that I can get repeat prescriptions of the supplements and a letter for my dentist so that he can confirm that my teeth are in good enough order to have the Zometa. Finally I was given an appointment for the first infusion of Zometa, which is given intravenously. I expect to get further infusions each month. My next appointment with the Urologist will be in early May. I'll make sure I get my PSA checked a week or two before then.
All in all I'm a lot happier than I was a few weeks back. Next week will be busy - next Prostap injection, first Zometa infusion, car in for service and MOT and a meeting with friends from an on-line forum.
On Friday 12th February I had a meeting with the Urologist. He seemed a bit surprised that I'd only been taking the Casodex since the Monday. I asked him for a testosterone check. He wasn't sure it was really needed but understood my reasoning for asking and agreed to it. He said that if the reading was not as low as it should be with the hormone treatment the next logical step would be a radical orchidectomy to remove my remaining testicle. I didn't argue but I'm pretty sure that there are other options available before that. I also asked that I be given Zometa (Zelodronic Acid), a bisphosphonate, to strengthen my bones which will have been weakened by both the cancer and the hormone treatment. He agreed to this and arranged for a blood test to check that I am in a fit state to receive it and at the same time extra blood was taken for the testosterone check. I was given a prescription for calcium supplements to be dispensed at the hospital, a letter for the Health Centre so that I can get repeat prescriptions of the supplements and a letter for my dentist so that he can confirm that my teeth are in good enough order to have the Zometa. Finally I was given an appointment for the first infusion of Zometa, which is given intravenously. I expect to get further infusions each month. My next appointment with the Urologist will be in early May. I'll make sure I get my PSA checked a week or two before then.
All in all I'm a lot happier than I was a few weeks back. Next week will be busy - next Prostap injection, first Zometa infusion, car in for service and MOT and a meeting with friends from an on-line forum.
30 January, 2010
hey unc, any updates?
My favourite niece sent me a message the other day saying "hey unc, any updates? how are you doing?" so I thought it was about time I got my brain in gear and wrote another blog. (I call her my favourite niece but it won't upset any other nieces because I don't have any.)
Last week I was really fed up. I had it in my head that I was to see the urologist at the hospital on the 22nd January and, indeed, that was originally the plan but I had received a letter ages ago moving the appointment to some time in March. Normally that would have been no big deal but I had had a PSA test on the 12th January so that the urologist would have the results before seeing me. Again this would have been no big deal if the count hadn't more than doubled from the reading at the end of November last year. The November count was 30.1 (up from 1.1) and could be explained by being taken too soon after my TURP. The new count was 79.1 and to say the least is a bit worrying. I certainly did not want to wait until March to talk this over with the urologist so I called the hospital and have managed to rearrange the appointment for the 12th February.
In addition to the high PSA count I have had some pain in my back and the top of my right leg I suspect that these are due to bone lesions caused by the cancer. So far the pain is manageable with off the shelf pain killers - Paracetamol and Ibuprofen. Never the less I still get some discomfort, particularly when walking - I get a twinge every time my right heel hits the ground.
I saw a GP at the local health centre last week to ask for a test of my testosterone level and to be referred to a particular oncologist at the Christie hospital. I'd picked that oncologist because he specifically mentions hormone therapy and chemotherapy for men with prostate cancer. As luck would have it the GP I saw was actually in training as a GP - he'd had experience as a hospital doctor and wasn't sure how to handle my requests and had to refer them to another GP. She said that they didn't do testosterone checks. There is no reason why they should not, other practices do, but I'll leave it until I see the urologist in a couple of weeks.
The reason for the testosterone check is that the hormone treatment is meant to stop my body from producing testosterone so that it can't feed the cancer. The rise in PSA indicates that the cancer is active so either the hormone treatment has become less effective - testosterone is still being produced and feeding the cancer - and there is room for extra and or different hormone treatment or the cancer has learnt how to do without the testosterone. The testosterone test would give a big clue as to which of these is the case.
With regard to the reference to the oncologist, the GP was not sure as to whether he could refer me to the specific oncologist or just to the department. I said that if it were the latter to include in his letter that my preference is for the particular oncologist. I called the oncologists secretary later but got no answer. I called again the next day and left a message. She called back and was able to confirm that it would be in order for the GP to refer me directly to the oncologist. I passed this information on to the GP's secretary.
There is actually an oncologist from the Christie on the Multi Disciplinary Team at the local hospital. I have met him because he was the oncologist I was first referred to with my testicular cancer but he is primarily interested in radiotherapy and I am particularly keen to have someone with a specific interest in hormone therapy review my case and potentially take over my treatment. Now waiting for a letter from the Christie for an appointment.
There is better news on other health issues. I had an eye test on Monday and although I am slightly more long sighted my current reading glasses are still OK. Also the health of my eyes - the retina and lens- is very good. I also had a check-up with the dentist. No problems with my teeth either.
Now the snow has gone I'm managing to get in an hour or so of walking each day albeit with a bit of a limp and slightly slower. The important thing is I'm loading my skeleton and strengthens my bones. Important because the cancer and the hormone therapy both weaken the bones. That reminds me that one of the things I'll be asking the urologist for is bone strengthening medicine - bisphosphonates such as Zometa. Other chaps with bone metastasis say they have benefited a great deal from such medicines but it is a bit of a post code lottery as to whether they are prescribed. I'm hopeful that the bone pain will swing it.
Enough rambling for now. I won't leave such a gap before the next screed.
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