bunnysan's perspective

What a nightmare!

2010-09-11T15:16:00.000+01:00

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.

Busy week

2010-08-29T14:54:00.000+01:00

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.

Dependancy

2010-08-21T15:55:00.000+01:00

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.

New routines

2010-08-16T15:14:00.003+01:00

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.

Home at last

2010-08-12T15:38:00.002+01:00

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.

SCC again!

2010-07-17T14:05:00.002+01:00

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.

Ooops

2010-07-11T16:37:00.001+01:00

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

2010-07-11T15:44:00.002+01:00

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.

It's all happening!

2010-05-30T22:05:00.004+01:00

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.

More progress

2010-05-22T22:02:00.003+01:00

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.

More Hormone Treatment

2010-05-04T20:39:00.002+01:00

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.

Anaemia

2010-04-26T21:30:00.003+01:00

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.

PSA up again

2010-04-15T20:01:00.002+01:00

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.

Tiredness

2010-04-11T18:40:00.003+01:00

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.

Home again

2010-04-03T11:32:00.004+01:00

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.

Operation needed.

2010-03-25T17:28:00.002Z

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.

Ouch

2010-03-24T16:03:00.002Z

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?

Progress and a blockage

2010-03-06T11:08:00.003Z

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.

More treatment.

2010-02-15T20:49:00.003Z

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.

hey unc, any updates?

2010-01-30T10:56:00.002Z

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.

Back to normal

2009-12-04T16:25:00.002Z

Let's start with the fainting fits mentioned in the previous post. I had a CT scan of my head on 18th November and saw the neurologist about it and the faints yesterday. After a chat and a physical examination he told me he believed I had just been having faints rather than fainting fits. The impact of this is that he says I can now drive again and come off the medication over the next week. I do, however, have to advise the DVLA of the blackouts but can tell them he says I am fit to drive.

I had a Prostap injection last Monday and a PSA test. The results of the test were a raised PSA level of 30.1. As I suspected, the rise is almost certainly because the test was done too soon after the TURP procedure (only 32 days). I will make sure I have another PSA test before I see the Urologist in January.

Today I had my latest check up following my testicular cancer. Usual blood test, X-ray and physical examination. Progress is as expected and my next check up will be in six months instead of the four months it has been.

Good news and something to think about

2009-11-01T23:07:00.003Z

Well the TURP operation on Thursday was completely successful. I was expecting it to be done under general anaesthetic, and could have insisted on doing so, but the anaesthetist preferred to go for an injection in my back to numb me from the waist done backed up with a tranquilliser to keep me calm. The latter worked so well that I was asleep within seconds of entering the theatre and don't remember much until being transferred from the trolley back to my hospital bed.

The catheter fitted after the operation was a special one that fed saline solution into my bladder as well as draining fluid from the bladder into a bag. The purpose of this was to flush any debris out. Towards the end of Friday fluid was flowing clear of blood and the flow rate of the saline solution was reduced. Then, in the evening, the saline feed was removed altogether. This meant that moving around was a lot easier because I only had to carry the bag with me and didn't need to push a drip stand around too.

On Saturday morning the catheter was removed altogether. Any peeing had to be into bottles so that the volume produced could be assessed. I found I could pee, with a good flow, and the volume was satisfactory. If it hadn't been for what else happened on the Friday afternoon I would have been free to go home Saturday evening.

So what did happen? I was sitting in the chair next to the bed doing a crossword puzzle when I first felt hot and then felt nauseous. I recognised these signs as being a precursor to fainting so I pressed the call button for a nurse and sat back. The next thing I new as I came to was that there were six or seven nurses and a doctor round the bed. I recognised the initial signs because they had occurred four or five times before over the last two or three years. I hadn't taken much notice of them because I had felt fine within half an hour or so.

The medics took a very different view. I was given various physical tests to confirm that I was in control of my facial muscles and had strength in my arms, legs, hands and feet. My reflexes were also checked including reaction to light shined into my eyes. I was given an ECG. Apart from the latter most of the tests were repeated by different doctors and nurses over the next couple of days. I was told by a doctor that one fainting fit might be a one-off. Two meant a 50% chance of more and three a 100% chance of more - I'd had more than three. I have been referred to the neurological out patients' clinic for assessment which will include a CT scan of my head. For the time being I must not drive.

The doctor wanted me to stay in hospital Sunday night with a view to having the scan on Monday. As there was no guarantee that there would be a slot on Monday and I was concerned about how well my wife would cope with me away for another night I insisted that I should go home. This was agreed to but not without a couple of hitches. First I had the oral agreement that I could go but the doctor had not documented this. Second, I had been given tablets to take to prevent a re-occurrence and a label needed to be put on the packet by the pharmacy. In the end I don't know if the doctor signed the discharge form or whatever and the box of pills hadn't returned from the pharmacy after a couple of hours so my son took me home with me agreeing that the tablets would be collected later. Well my son phoned the ward three times during the afternoon and the tablets never got back to the ward so I will not be taking one tonight. I'll call them mid morning tomorow to see when I can go and collect them.

Re-bore planned

2009-10-09T21:02:00.003+01:00

Last Monday I 'phoned the consultant's secretary to see if the results of the biopsy were available. The message on the answer phone listed the hours that she worked - just three days in the week. On Tuesday I got through and learnt that the biopsies were clear and the multidisciplinary team would be discussing them on the following Thursday. I asked about the catheter. She said she could book me into the consultant's clinic but he might prefer that I go to the day ward again. She'd check with him and send me a letter with appointment details.

On Thursday afternoon I had a call from the secretary asking if I could attend the consultant's clinic the following day. I said I could and I was booked in for 09:30. Friday morning I drove to the hospital to attend the clinic. I saw the consultant before 10:00. He told me that he reckoned that the best thing for me would be a TURP (Transurethral resection of the prostate) - a sort of re-bore of the passage the urethra takes through the prostate. I was half expecting this and had contemplated that it might become necessary even before the problems caused, or rather worsened, by the biopsy procedure because my flow was becoming rather thin. As I was happy to proceed he checked when the operation could be done (29th October), arranged for a sister to go through the consent procedure with me and then sent me to the pre-evaluation suite.

I left the consultation with a leaflet about the TURP and my copy of the consent form and a package containing my notes. I handed the package to the receptionist at the pre-evaluation suite and was told they were booked up for the rest of the morning but I could be seen in the afternoon or early next week. I settled for Monday afternoon. I'll be in the hospital for two or three days for the TURP. I'll have a catheter again after the operation until my urine runs clear then I'll be allowed to go home without it. There is more information about TURP here http://hcd2.bupa.co.uk/fact_sheets/html/turp.html

A week or two back I had a letter from the consultants at the Christie Hospital who are monitoring me following my treatment for testicular cancer. The letter was to invite me to take part in a clinical study of potential genetic influences in testicular cancer. I've agreed to this as it only involves providing some blood and answering some questions. I've filled in the initial form and sent it to the research coordinator and now await the request for my blood sample. I suspect it will be taken at my next appointment at the Christie in early December.

Over the couple of weeks before the TURP I intend to be a bit more active despite the catheter. That probably means a couple of short to medium walks per day and maybe some resistance exercises at the gym. I may even try a cycle ride.

A blockage

2009-09-23T20:20:00.001+01:00

I had passed a lot of blood during the day Monday but my water was clear in the evening and Tuesday morning. I'd not had much exercise these last two or three weeks so I walked into the village to do a bit of shopping and back again - about a two mile round trip. It was after this that when I opened the "flip flow" valve on the catheter that no real fluid was passed and what did do contained clotty blood. This happened twice. So I changed the "flip flow" valve for a leg bag so that my bladder could drain all the time even if the flow was nearly non existent. Added to this twice urine blood mixture was forced pass the catheter. So I called the urology nurse who advised me to go to see my GP (who would only be able to tell me how full my bladder was) or go to A&E.

So I spent a couple of hours of late afternoon / early evening in A&E. My catheter seemed to be blocked and there was plenty of blood in what had come through earlier. After taking blood samples and doing the usual blood pressure and temperature checks A doctor from the urology department came to see me. Wouldn't you just know it, the catheter bag had filled! We decided that, rather than replace the catheter, the one already in would be flushed. A clot of blood came out on the first flush but nothing more on the next two. All seems to be OK now - no more blood and bag filling nicely. I hope it stays that way.

Many thanks to my mate and his wife from down the road who drove me to and from the hospital and waited around with me whilst I was there.

Still OK today (Wednesday).

I think I know what caused the problem. I had strapped the catheter pipe to my thigh to keep it tidy but I think the walking pushed the pipe in and out a little. Probably just a couple of millimetres but enough to irritate my penis (walking was uncomfortable) and cause the catheter balloon to chaff my bladder. Needless to say the pipe is no longer strapped although it would probably be OK to do so provided that enough flexibility was allowed above it.

A Disappointment

2009-09-19T15:32:00.002+01:00

Yesterday, Friday, I went to the hospital to have the catheter removed. This was done with no problem and I just had to hang around and make sure I could pee before going home. So I was plied with tea and water to encourage the process. The first couple of attempts just produced a dribble with some blood. The next was a bit more encouraging - enough to slosh around in the measuring bottle - but still pretty pathetic. After lunch of a salad sandwich, more tea and water, the next attempts at peeing were more productive and were clear of blood but it was clear that I was taking in more liquid than I was passing out. The nurse said she'd give my bladder a scan after my next attempt to see how much fluid was being retained in my bladder. The scan showed that there was about 300ml still there.

It was decided to give it a bit longer before deciding what to do next. I had another cup of tea and went for a walk out of on hospital entrance around the block and back to the other entrance. The next pee was still less than 100ml.

Decision time. I could go home and hope it improves. The down side to this option was that if it didn't improve and I began to get discomfort due to the build up of urine in my bladder I'd have to go to A&E to get it sorted because the day case ward would be closed. So far there had been no discomfort despite more liquid intake that output. The second choice was intermittent self catheterisation. This would allow me to go home with some catheters and to use one maybe twice a day to stop my bladder getting over full. The third option was a permanent catheter like the one that had been removed that morning although I could have a "flip flow" valve (like a tap) instead of a leg bag.

I was very tempted just to go home and hope for the best but decided to give self catheterisation a try. The nurse explained what was involved gave me a catheter and left me to give it a go. Holding the tube (a normal sized one) in the proper way there was no way I could manage to even get it started. I discussed my failed attempt with the nurse. She told me that it would be all right to hold the tube near to the end to be inserted if that would help. She got me a smaller (narrower) sized catheter and offered to be around whilst I tried to insert it. This time I got it started and it was well in before it hit some sort of obstruction and refused to go further. The same thing had happened last week when two nurses failed to insert a catheter.

Now it was only the third option left. The nurse went off to get a normal catheter which she managed to insert with no trouble. A bag was attached initially so that my bladder could be drained then a "flip flow" valve was put in its place. The nurse had also brought along a bag containing some reusable night bags, a spare "flip flow" valve, a couple of leg bags, and a leg strap to keep the leg bag tube close to my thigh. She also contacted the company that supplies these items. They will contact my GP for a prescription, deliver extra spares on Tuesday and when ever I contact them for more (the one prescription is enough no repeats needed). She also put in a request for an urgent appointment with my Urology Consultant so that something can be done about the problem.

So, rather than being rid of the catheter as I had hoped, I'm lumbered with it indefinitely. There being no point in going along to the hospital each week, having the catheter removed, trying to pee, failing, and going home with another catheter. Especially if the problem has been brought on by various tools and tubes being poked into my bladder and something in the pipes, possibly the prostate, swelling up in protest and restricting the flow. I'm not inclined to allow any further internal investigations though. I'd rather stick to using the catheter for a couple of months whilst any potential inflammation settles down. I don't want any more prodding about causing more inflammation.

A curious thing with the catheter is that even though my bladder is emptied into a bag or via the "flip flow" valve, every now and again the system tries to pee normally and manages to squeeze a small amount of fluid out past the tube. Most of the time it is just a drop or two but occasionally it is enough to be potentially embarrassing. It is easier to manage with the "flip flow" valve because using the valve upon the warning signs usually pre-empts this happening. Even so, I'm using incontinence pads in case it happens whilst I'm out and about just in case.

What a nightmare

2009-09-11T17:30:00.004+01:00

It should have been a straightforward procedure - Rigid cystoscopy and bladder biopsy. I understood it was to be done as a day case so didn't take any overnight things to the hospital at the appointed time of noon on Wednesday. The admittance notes had me down for overnight. Anyway I was taken to the ward and an allocated bed. All the admittance procedures went smoothly enough and I changed into a hospital gown.

At about 14:20 I was led downstairs to the surgery reception and fitted out with heart monitor and blood pressure cuff. A few minutes later wheeled into the anaesthesia room where a cannular was inserted into the back of my left hand. Pretty much the next thing I knew I was in the recovery room and ready to be taken back to the ward. The good news is that the surgeon could see nothing amiss in my bladder but took four random biopsies for testing anyway.

I had told the surgeon that I was keen to get back home the same day, and accordingly he had not fitted a catheter so that if I had no trouble peeing I'd be allowed home. Unfortunately I did have trouble peeing. This was almost certainly down to the damage done to the end of my penis by the cystoscope. Apparently I have the tightest entry the surgeon had come across and the skin on the inside of my penis had been torn and probably bruised too. After two or three hours of not being able to pee a catheter was inserted to allow my bladder to drain. So an overnight stay anyway.

The next morning the catheter was removed. I still couldn't pee though. After a couple of hours a short catheter was inserted on the basis that the obstruction to the flow seemed to be in the penis rather than the bladder. This was unsuccessful. So an attempt by a couple of nurses to insert a normal catheter was made - unsuccessfully. So a call was made for one of the doctors to come and do the job. An hour or two later a reminder call was put through. After about seven hours of desperately needing to pee and failing and getting pain in my penis with each attempt I was getting pretty distressed. The nurses, bless them, saw this and, I think made it pretty clear to the doctor that he was needed urgently.

Well, the doctor came, and not without some difficulty, managed to inset a catheter. What a relief - physically and emotionally. The down side was that I'd have to stay another night in the hospital, but all things being well I'd be able to go home the next day with the catheter still in place attached to a bag strapped to my leg.

I had a good night and the catheter worked well and this morning the doctor agreed that I could go home with the catheter fitted and keep it in place for a week. After the week I am to have it removed and to see if I can pee without it. Getting the OK to go and actually getting away are not the same thing. I pointed out that I had an appointment at the health centre this afternoon for my next Prostap injection and I really did not want to miss it. I think this concentrated their minds and by 14:00 the paper work was done, an appointment booked for next Friday to remove the catheter and a supply over overnight bags and a spare day bag provided with instructions on their use.

Matthew, my eldest son, picked me up from the hospital and took me home. He also agreed to drive me down to the health centre for my appointment. Just as we were about to leave I got a call from Smile about suspected fraudulent use of my credit card. We decided to sort that out on our return. I had the Prostap injection but didn't bother with the PSA test - the nurse confirmed my thoughts that all the mucking about around my prostate would produce artificially high readings. I'll get that done in a month or six weeks time.

So for the next week I'll be living with a catheter and bag. I don't think I'll go to the gym next week nor doing any cycling. Walking is OK but a bit strange at the moment. It is good to be home and more or less back to normal though.

A call back to Smile confirmed that someone had been using my card on an on-line betting site. So the card is stopped until they send me a new one. They told me not to worry about the fraudulent transactions (about £700 worth), they will be removed from my account as the fraud department handles the matter. Just an inconvenience but an unwelcome one.

Ain't life fun?

Wonky bladder?

2009-08-01T15:14:00.003+01:00

At each of my check ups at the Urology Clinic for my prostate problem I have given a sample of urine and each time the cytology has found suspicious cells unconnected with the prostate. After the second such sample I underwent a flexible cystoscopy examination and a CT Urogram neither found anything untoward. Now that the latest cytology has found suspicious cells, the Urologist wants me to have a rigid cystoscopy examination and bladder biopsy. Thankfully these will be done under general anaesthetic as a day case at the hospital – a rigid cystoscope up the water works sound most uncomfortable. I should get an appointment letter sometime in the next week or so.

The situation is then that the testicular cancer is in remission (next check-up early December), the advanced prostate cancer is under control (next check-up January) and bladder cancer (I presume) is under investigation. If the series continues, I suppose it will be the kidneys next. :)) As is to be expected this has my wife back in worry mode and to be honest, it has me a bit disconcerted too. Life's too short to let it get me down though.

Check-up

2009-07-24T15:17:00.003+01:00

I saw one of the registrars this morning. They are basically happy with the way the treatment is going and are happy that the PSA count is down to 1.1 – in the normal range. I asked about bone density checks (the hormone treatment I am on thins the bones) and was told that they don't do such tests until there are symptoms such as bone pain and that won't happen until I've been on the treatment for many years. The same applies to bone strengthening treatments (such as Zometa). I asked about their policy regarding stage three clinical trials. The multi disciplinary team discusses the patients suitability for such trials and offer them at the start of treatment. I said I was interested in the Stampede trial and the Alpharadin trial if I fit the criteria. I do understand why I might not fit the trial protocols – Stampede because of recent testicular cancer and Alpharadin because of spread to lymph nodes – but I want them to know that I am interested. Finally I asked that I be copied with any correspondence with my GP.

I had to provide a urine sample for cytology tests. The samples given on previous visits had suspicious cells in them but further investigations had found nothing. The suspicious cells are unrelated to the prostate cancer but could point to problems with my bladder or kidneys. If anything suspicious is found in the sample this time, I will be called in for another cystoscopy examination (camera poked through the tubes), this time under general anaesthetic as a day case patient. I should know within a fortnight whether this will be necessary. Otherwise my next appointment will be in six months time.

Out of limbo

2009-06-19T19:59:00.003+01:00

On the 17th June, just before my second prostap injection I had another PSA test. This afternoon I 'phoned the health centre to get the results. The PSA count is down to 1.1. I am relieved that the PSA count is low. Reason said it would be but there was always a nagging doubt. Now looking forward to the count to go sub-zero. I'm putting some questions together for when I next see the Urologist at the end of July. I hope he is not pushed for time!

Limbo and a welcome visit

2009-04-23T16:26:00.002+01:00

I'm halfway through the period from my first Prostap injection to the next one in mid June. I'm really impatient to find out if the treatment is working but won't really know until I get the results of the next PSA test which will be taken at the same session that I get the next Prostap injection. It is frustrating because I don't see much change in my symptoms. At least not as much as I would have hoped. I still need to get up three times a night and often need two attempts to empty my bladder. I also get the same, low level, discomfort in my lower back.

Just after Easter my parents, brother, other brother's widow and her son came up to visit. This took a bit of organising and increased my wife's stress levels somewhat. She coped with the stress by taking charge of what would happen here. I'd not noticed this coping strategy before, but I'm sure it is not new to her. In the past I would have matched her assertiveness with assertiveness of my own but the treatment had an effect and I just didn't have the energy to put my own case forward. On the Easter Monday, things came to a head with me feeling bullied [this is the nearest I can get to describing my feelings at the time but it is not absolutely accurate]. My wife could tell I was not my usual self and insisted I tell what was wrong. This was difficult because I didn't really have the right words and I knew that if I actually started talking about it I was going to be tearful. She insisted and I told her, between sobs, that I felt bullied. That I knew that she was not bullying me but that this was the best I could describe the feelings. This occurred mid morning and it was not until late evening that I began to feel better.

In the event things went very well. My parents travelled up bu coach to join my brother, nephew and sister in law in Milton Keynes where they had been staying with my niece and her family over Easter and they drove up here Tuesday afternoon. They had an evening meal with my youngest son and his fiancée and stayed in the Travel Lodge over night. On Wednesday morning they came over and, once my youngest son arrived we went into the village for a coffee (to give my wife some quiet time to herself). My elder son was to join us there but he turned up late and missed us. Then back home for a light lunch. Youngest son skipped this but elder son joined us. We had a pleasant time together and, I hope, my parents left less worried about me than when they arrived.

They all left late afternoon to drive the 280 or so miles back to Ramsgate and they were home by 22:30 despite an incident in Leek where a van shot out from the oncoming traffic, clipped their wing mirror and smashed into the following car. The incident involved police, ambulance, fire brigade and an air ambulance. This added about a half an hour to their journey time.

A small milestone

2009-04-08T16:07:00.007+01:00

Monday I finished the course of Cyproterone Acetate tablets so now my treatment is just the Prostap. The only side effect I noticed from the tablets was some breathlessness. Hopefully, now they are finished, this will cease. There is also some potential for side effects from the Prostap. There are a couple that appear to be affecting me. The first is loss of sex drive and erectile dysfunction. This is not a big deal for me or my wife, fortunately. The other side effect is diarrhoea but this may be down more to my changed diet rather than to the treatment. Again, it is not a problem because it is not the sort of diarrhoea associated with food poisoning or a stomach bug where one dares not stray far from a lavatory. Rather it is just that when I move my bowels the stools are very loose.

Also on Monday I finished reading Professor Jane Plant's book Prostate Cancer: Understand, Prevent and Overcome. This is where the change of diet comes in. Mostly I am very sceptical of diets that claim to prevent disease or give one big health benefits. I've been of the opinion that a balanced diet is enough along with not consuming more calories than are burnt off. However, Jane Plant appears to have researched the subject of her book very thoroughly and has references to peer reviewed scientific research to back up her reasoning and conclusions. This is enough to persuade me that it is worth following her advice, even though, for me, it is too late to prevent prostate cancer.

I have also been perusing another of her books written jointly with Gill Tidey: The Plant Programme; recipes for fighting breast and prostate cancer. The diet is based largely on Chinese diets because in China (except in some cities where western diets are becoming more popular) prostate and breast cancer is practically non-existent. Dairy products are not used in China and animal protein is a very small amount of the total diet. The authors propose a scoring system for types of food ranging from 0 to 10. Those with active cancer (like me) should have a score of no more than 4 for any meal and no more than 15-20 for a day, averaged out over a week to allow for treats. Those on a prevention or maintenance programme should have only one meal a day scoring more than 5 and a total score per day of 30-35 averaged out over a week. The scores are as follows:

Fresh fruit and vegetable juices and salads	0
Soya "milk" and "yoghurt", nuts, dried fruits, uncooked grains and bean curd (tofu)	1
Mixed cooked and raw vegatables and fruit	2
Cooked vegatables, fruit, grains and cooked dried pulses	3
Canned beans, vegatables, Soya "cream"	4
Dominantly vegatables with eggs	5
Dominantly vegetables, with chicken, duck, fish, and seafood	6
Dominantly vegetables, with lamb, pork, rabbit, venison	7
Dominantly egg	8
Dominantly chicken, duck, fish, and seafood	9
Dominantly lamb, pork, rabbit, venison	10

The Plant Programme has a large number of recipe suggestions organised under meal types, breakfast, snacks, main meals. There is also advice about eating away from home. So far I am finding it quite easy to 15 points per day, especially averaged over the week.

Both books are well worth a read and should be readily available for purchase from the usual sources as well as for loan from your local library.

Some good news

2009-03-27T21:38:00.004Z

It's been an interesting eight days. Last Friday I had a CT Urogram at Stepping Hill Hospital, a CT scan of my urinary tract. The appointment letter said I should drink water one hour before the appointment. I did this but emptied my bladder just before I cycled to the hospital. Once there I was asked to change into one of those split-back gowns and presented with about a litre of water to drink. Before the scan I was injected with stuff to highlight the area of interest and some other stuff to make my kidneys work faster. After the scan, I'd barely got dressed when my bladder demanded to be emptied. A few minutes later and the same demand. I cycled home with my bladder demanding to be emptied again. This continued with, thankfully, longer periods between the demands for the next couple of hours.

Last Tuesday I had the first of my hormone injections (prostap) at the local health centre. Next one due 16th June and I'll get my PSA checked at the same time.

This morning was the appointment for the Flexible Cystoscopy at Stepping Hill Hospital Urology clinic. I'm getting blasé about strangers fiddling about with my private parts now. The procedure was painless but not without some discomfort. It is quite fascinating to see the inside of ones plumbing. The camera was not attached all of the time though because the doctor could see better and manipulate the gubbings better without it. There was nothing obviously wrong with my bladder. Good oh! The CT Urogram did not show up anything either. At least, not concerning the bladder. It did show that the prostate cancer has spread to some abdominal lymph nodes as well as my bones. I don't think this is a big deal because there will be no change in treatment and the treatment will be just as effective against the cancer in the lymph nodes as in the bones and prostate itself. My next check up will be in four months and my urine will be checked out again then.

Following the procedure I was advised to drink plenty of water to help prevent any chance of an infection and to expect some blood in my urine for a couple of days. If I suspect I have an infection (temperature, feverishness) I'm to see my GP. The first few times I emptied my bladder there was some discomfort and plenty of blood. By late afternoon the discomfort has gone but there are still some traces of blood.

This afternoon it was over to the Christie Hospital for my regular check up regarding the testicular cancer which is [in remission] cured. Usual procedure: provide some blood for tests, physical examination and chest X-ray. I took the opportunity to tell the doctor about the prostate cancer. Next check up in four months.

So, hopefully, there will be nothing to report on the cancer front until I get my next PSA results at the end of June.

Taking stock

2009-03-14T20:31:00.001Z

As can be expected I have needed to have a bit a rethink about what is important. Feedback on the forums on the Prostate Cancer Charity suggest that it is important too. First off I wanted to be informed. I want to know what I can expect from prostate cancer and the treatment of it. The Prostate Cancer Charity website has been invaluable. It has what it calls The Toolkit which contains fact sheets covering Diagnosis, Treatment and Lifestyle. A couple of these were given to me in the information pack provided by the hospital and I've printed off several more and have started to read through them.

The other important aspect of the Prostate Cancer Charity web site is the Message Board. There are many long term members of this forum who have been living with protate cancer for years. What stands out about them is their cheerfulness, optimism, determination not to give in to their condition and their encouragement to new members most of whom will be newly diagnosed. These fellows have taken control of their lives. I don't know whether there is any scientific evidence to back this up, but it seems to me that being positive and taking control makes a big difference to ones prognosis, even when the initial clinical signs are not at all encouraging. This has given me a big fillip.

I'm a born optimist and am generally cheerful so what I am working on is taking control. Firstly with regards to diet. The general concensus seems to be that a dairy free diet that avoids red meats and is low in fat and sugar is the way to go. The dairy free part is going to be the hardest aspect for me. I love cheese and butter but I'm sure I can adapt. Replacing meat with fish will be no hardship.

Exercise is also important especially keeping the bones strong because the hormone therapy can lead to osteoporosis. I will be walking in the fresh air as often as possible. This will load the skeleton and be good for vitamin D. On sunny and bright days anyway. I'll also get some resistance exercises in the gym and do a bit of cycling.

From a practical point of view I am sorting things out so that, some distant time in the future, my wife will be able to get on with things with the least hassel possible. This will be an ongoing project.

The cytology tests of the second urine sample I gave proved suspicious so I will be having an internal examination of my urinary tract later this month. I will also be having a CT scan of the urinary tract. The CT scan is OK but I can't say I'm looking forward to the other.

Test results

2009-03-09T15:23:00.002Z

Just back from the urology clinic at the hospital and the news is not good. Prostate cancer is confirmed and what is more it has started to spread to my bones. This means that it can't be cured just controlled for a period. For those that like numbers, the PSA test from my first hospital visit was 79.9 (up from the 57) and the Gleesen number 9, with 80% of the prostate affected both sides.

My treatment starts today with hormone therapy by pills. This will last 28 days. A week or two into this treatment I will start the long term hormone treatment delivered by injections each 12 weeks. The purpose of the treatment is to knock back the testosterone produced by my body which feeds the cancer. The treatment should be effective for one or two years until the cancer adapts to lack of testosterone and starts growing and spreading again. The doctor said that there are further treatments available once this happens but didn't say what they were.

There are likely to be side effects from the hormone treatment. My libido will be reduced; I'll probably put on weight around my belly; I may get hot flushes; I may develop breasts; I'll likely easily tire.

To add to that lot there were traces of blood in the urine sample I provided at the first hospital visit. This was unexpected and may indicate problems with my bladder or kidneys but there was no evidence of this in the MRI scan. So I provided another sample today as a double check. If there is evidence of blood in my urine again I'll need to undergo an internal examination of my urinary tract including bladder and kidneys.

So what happens next? I'll peruse the various booklets provided by the nurse and see if there are any changes to my diet and life style that will help to control the cancer. I'll have a good clear out. My wife has been urging me to do that for years and it will be one less worry for her. I'll complete my "what to do when I'm dead (or very ill)" file so that my sons can support her when I'm gone. Not that I have any intention of going any time soon. I'll see if I can persuade her to learn how to use a computer - it will be of great benefit for her. Apart from these things I'll just get on with life.

MRI Scan

2009-03-02T15:12:00.001Z

I had a bit of a panic this morning. The letter advising me of my MRI scan appointment asked me to confirm the appointment as soon as possible and I'd forgotten to do so. Thus, ten minutes before I had planned to leave for the appointment I was hanging on the 'phone listening to a message thanking me for calling and telling me I'd be put through to someone as soon as they were available. I was getting twitchier by the minute. At last I did get through and the appointment was confirmed. Whew! So off I set on my bike.

When I got to the scanning department, a BUPA facility set up in the hospital that provides services to the NHS as well as private patients, I was asked to fill in a questionnaire designed to check whether I have any metal in my body or had any recent medical procedures that need to be taken into account. I was able to reply "No" to all of them.

When they were ready for me I had to strip to underwear and socks and put on a disposable gown, again to ensure no stray metal. The radiologist went through the questionnaire with me again and then we were off. I'd been told these scanners are noisy but I was not quite expecting the intensity of the noise. This despite wearing headphones playing a local radio station. The radio was in audible whilst the scanner was active. Probably a bit like being in a thick walled metal box with demented smiths hammering on the outside with the sound of miss-tuned radios added for good measure. Fortunately the procedure only lasted about 25 minutes with the longest spell being about 15 minutes.

I'm looking forward to seeing the consultant again to get the results of the various tests. I'll be disappointed if it is later than next week.

Prostate Cancer Awareness Month

2009-02-23T22:41:00.002Z

March 2009 is Prostate Cancer Awareness Month. Learn more about it at prostate -cancer.org.uk

Prostate ultrasound scan and biopsy

2009-02-23T16:53:00.002Z

Well that is another check out of the way. It didn't hurt though there was some discomfort. This is how it went.

First Emma one of the nurses explained what was to be done and who would be there whilst it was done. She explained the potential risks, what would be done to mitigate them and what to do if I suspect I have an infection. She also checked whether I had various conditions that they'd need to take account of. I am to expect some blood in my urine and stools for up to a few weeks but probably only for a day or two.

The main risk is that infection could get into my blood stream through the site of the biopsy. The symptoms to look out for are those akin to flu - feverishness, aches, feeling unwell - if I do get these I'm to go straight to A&E because I'll need intravenous antibiotics. The mitigating actions are preemptive antibiotics, the first of which she gave me. She also gave me tablets to take tonight and tomorrow. I then had an hour to spend whilst the antibiotics took effect before the actual treatment. I went off to have a black coffee and a scone.

The hospital is testing out new machines to do the ultrasound scan and biopsy because the existing ones, though serviceable, are getting a bit old. I was asked if I minded being treated with the machine under test. I was happy to agree, not least because the machine is a better one. It did mean that there was a representative of the machines makers present, but what ho, if there was going to be two doctors and two nurses another woman would make little difference.

The ultra sound scan and biopsy is actually a single procedure - the scan helps the doctor position the tool to take the samples. I had to get changed into one of those daft gowns that are open at the back. Makes sense for this procedure though. The doctor explained the procedure again and gave me another chance to ask any questions. Then I had to lie on the bed on my left side with my knees up to my chest. A pillow supported my head. The two nurses were on the other side of the bed, the way I faced, their main purpose seemed to be to engage me in conversation to take my mind off of what was happening in my back passage. They did it well.

The doctor first examined my prostate with a finger before inserting the tool and injecting a local anaesthetic. I felt the tool being inserted but not the injection. I think that the lubricating gel they use has some anaesthetic properties itself. There was some discomfort as the tool was moved about inside me and some of the biopsy snips made me jump a bit but there was no pain. Then the tool was withdrawn and I was allowed to lie on my back for a while whilst the information about expecting blood and what to do if I suspect an infection were repeated. It was also emphasised that if I have any worries over the next few days I can ring the clinic, or if out of working hours, the urology ward. Then it was get dressed an go home. I was given some tissues to put in my underwear to soak up any potential bleeding.

The results should be available to the consultant in a week or so. I'll get a call from the clinic to make an appointment to see the consultant when he has the results. My friend, who has recently been through all this, gave me a lift home and suggested some questions to ask when I next see the consultant about the results. When I got home I found that the postman had delivered a letter from the hospital detailing my appointment for the MRI scan which will be next Monday morning. It is pleasing to see the urgency being applied to get things sorted. Actions are happening in days rather than weeks.

What's it all about?

2009-02-20T16:42:00.003Z

It looks like things are going to get interesting for me and I want my friends and family to have an easily accessible way to find out how things are going.

Two years ago I had worries about one of my testicles but I didn't take immediate action. I was lucky. I had testicular cancer (seminoma) and it had spread to two or three lymph nodes. An operation removed the offending article and chemotherapy sorted out the lymph nodes. Since November 2007 I have been clear.

A few weeks ago I noticed changes to the way and the frequency I was passing urine. No waiting around this time. My GP examined my prostate and arrange for a PSA test. When I saw him again to get the results he told me that the count was high (57) and that he had referred me to the Urology Department at the local hospital.

My appointment at the hospital was yesterday. The consultant there examined me again and confirmed that it looks very much like prostrate cancer. He put things in train for me to have an ultrasound scan and biopsy of my prostrate gland, a bone scan and an MRI scan. I also provided more blood for another PSA test and checks of my kidney function and blood calcium.

No hanging around. The ultrasound scan and biopsy is scheduled for Monday morning. I've just got back from the bone scan and the MRI scan will be done within a few weeks. I'll have another meeting with the consultant once he has the results of the biopsy in a week or ten days from Monday.

I reckon this is a fine example of the NHS working well, just as it did two years ago. I'm optimistic that the problem has been found early this time and that the prognosis is good.