Accident

I was so pleased about my walk on Wednesday but life isn't all plain-sailing as I found out that night. I had been asleep about an hour when I woke up and became aware I was lying in a puddle. Yes, it was a real puddle rather than just a damp patch. So it was a strip the bed type puddle and kept us awake doing it including, of course, the time it took me to change my bag.

It had leaked from the side of the bag which, I think had over-filled because there was a twist in the pipe to the night bag.

This was my first overnight accident since coming home some six weeks ago and the first time I have wet the bed since I was a child apart, of course, from those incidents in hospital which their damned fault, not mine.

At least I am pretty sure I know why it happened so I'll be more vigilant in future.

These Boots Are Made For Walking!

And that's exactly what they did this morning.

I walked the mile to the Village, did my shopping and then pulled the buggy back. OK, I was starting to flag a bit for the last couple of hundred yards but I did it.

Luckily the snow and ice had all gone, of course, because I wouldn't have dared risk a fall had it still been slippery out there but it was a fine, mild morning and I enjoyed the walk. It was good to do that walk without being in pain and wondering whether or not I could get home before my bladder let me down.

Today I went out with a leg bag attached and despite my concerns it showed no sign of coming adrift as I walked. My only problem was that wearing jogging pants there was no way of adequately securing them and I had that uneasy feeling that they were gradually coming down but of course that was just in my head. However I really must see if I can get into any of my jeans now that my stomach is a lot less tender than it was.

Some Good, Some Bad

yesterday, Tuesday, was to discover the results of the recent CT scan on my lungs assessing the size of that "indeterminate" nodule that was discovered accidentally in September.

I have learnt to expect bad news so it was with increasing anxiety that I sat waiting for the consultant to see me and it was a long wait. I grew more and more angry as the time passed and I was finally seen an hour and three quarters after my appointment time. I made my displeasure known and said that keeping patients hanging about like that without a word of explanation or apology was utterly unacceptable. I don't think they even grasped why I was so angry so ingrained in NHS psyche is the attitude that, although doctor must not be kept waiting, the patient can be kept waiting as long as suits the doctor.

Anyway, to the more important issue. That damned nodule has grown. It was 11mmx11mm and three months later is now 12mmx12mm. My immediate reaction is that must be within the margin of error of the equipment and Dr. B. did not argue with that statement. Thinking about it since I am even more persuaded that it could be such as, of course, owing to my recent surgery my muscular structure around my abdomen is very different from what it was in September and the incision came right up to my ribs. The position of the lower lobe of my lung as I lay on the CT scan bed could easily have been different from what it was three months earlier.

Of course in another three months if there is another increase in size however small then it can't be ignored. Dr. B's view was that this "creeper" as he described it, would grow more rapidly at some point next year.

We talked treatment options. There is a new radiotherapy option which, instead of giving about 20 low-powered zaps gives 3 or 4 high-powered zaps. There is also a surgical option, possibly using keyhole techniques which Dr B said was more certain in that it removed the suspect tissue completely from the body and allowed it to be examined microscopicly whereas with radiotherapy it's still in the body and you are guessing as to its exact nature.

I gather it's too small to bother doing a biopsy first.

At least, even if it does grow, it has been picked up early so there is a very good chance that the treatment will be successful.

The NHS Strikes Back

After yesterday's brilliant performance when everything ran like a well-oiled machine the NHS returned to normal today - with a vengeance.

Ann and I arrived on time for my 10:30 appointment but after a few minutes one of the nurses told us that as there were only three doctors running the clinic they were running an hour behind. That turned out to be a rather optimistic estimate as it was noon before I was called in.

The actual consultation with Mr. C took only a few minutes. He was very happy with the way the wound was healing and although he said they had found some traces of cancer outside the bladder in the other tissues they had removed there was no need to panic.

It was agreed that CT scans should be coordinated between urology and lung departments and that my next urology appointment would be in about six months. In the meantime he wanted to arrange for some kidney function tests which involve a radioactive isotope being injected into me. I think this may be the same test that was carried out before my chemotherapy last year.

Then he said he wanted me to have a blood sample taken. This meant going downstairs and waiting in yet another queue for about half an hour. Why wasn't this done whilst I was sitting around twiddling my thumbs for an hour and a half upstairs? Does the NHS really not give a damn for the patients?

So it was about 1:30 before we got home, hungry and thirsty since we had had nothing to eat or drink since breakfast at about 7:00.

CT Scan

Another day, another scan.

Well, sometimes it feels like that.

Just in case you've forgotten, during the checks before my bladder was removed three nodules were found in my lungs and a PET scan showed that one was in an "indeterminate" state and had to be watched. Today was the first of the three-monthly checks to make sure that damned thing isn't growing.

It seems such a minor thing compared to the state of my bladder but one thing I have learned is that cancer can come back and bite you on the bum just when your are least expecting it so I'm not assuming anything before I see the lung consultant for the results of this morning's scan on December 21st.

The scan went off remarkably smoothly and I was back home within an hour of leaving. I arrived five minutes early, I was called in a couple of minutes early and as soon as I stripped to the waist I was on the couch and the machine was running. The scan itself took less than five minutes and by the time I got back to the hospital's main entrance my cab was drawing up.

If I were a superstitious person I would think that such an easy day today can herald only bad news later.

And tomorrow is the follow up appointment after my surgery. They will have the results of the microscopic examination of the edges of the tissues they removed. I hope there is no bad news from that examination and I worry what the next step is if the news is bad.

More tomorrow.

Shopping

Today was for replacing my wardrobe, or at least those bits of it which included trousers with a 34" waist. My younger son said he would come with me and we decided to avoid our massive local shopping centre as it would be packed with Christmas shoppers and opted instead to head for a local town centere, Altrincham, where I had heard there was a branch of Greenwoods, a traditional men's outfitters.

My reasoning was that I would need some advice and maybe a man who knew how to use a tape measure to get something suitable. If all else failed they could always do me a made to measure deal but as it turned out that wasn't necessary.

I am now the proud possessor of a suit and two pairs of slacks each with a high waist clear of my stoma and with a 40" waist. Ann has bought me a couple of pairs of smart braces so I'm now fully equipped.

The best thing about this outing was that I was away from home and the bathroom wearing a legbag and I didn't give it one thought through all that time. This has been a great psychological step forward.

Also when I got home I found that my court rota for next year had arrived by e-mail. I had said not to schedule any dates for January but Jan has done that. Since the first date is January 13th I am pretty sure I will be ready and eager to get back.

This has been a good day & I hope the rest of the week is as good. I have a CT scan to monitor those damned nodules in my lung on Thursday 9th and a urology appointment to follow up my surgery on Friday 10th. Let's hope for good news.

Trousers

This sounds pretty trivial but I suspect it's going to be a bit of an expensive issue for me. So far since coming home I've been waring jogging pants as they are loose-fitting and haven't put any pressure on my poor wounded stomach but clearly I am going to have to wear some smarter trousers sooner or later.

I have always worn trousers with a pretty tight waist as I feel most comfortable in such but I doubt if I will be able to from now on. The stoma is just at the wrong height to make that simple. It's just too high to allow the whole thing to be just below the top of my trousers and if the trousers pinch just below the stoma then they will constrict the bag and are likely to lead to embarrassing leaks.

I have been advised that I may have to stop wearing a belt to support my trousers and instead use braces. I remember braces from when I was a little boy and I hated them back then so I am not happy that they are my future. How stupid will I look in a summer shirt, no jacket and damned braces???

The other thing is, of course, that I may have to replace all my current wardrobe by trousers with a size larger round the waist and that could cost time and money.

Out And About

Today I had my longest expedition. I had previously taken a short walk of some 200 yards and had made a trip by cab to our village shops about a mile away but today I was more adventurous.

I took a cab into Sale, bought some fish, walked about a quarter of a mile to the bank to withdraw some cash, walked about a hundred yards to my bus stop, waited (standing up) for about five minutes and then caught the bus to the nearest stop to home. Finally I walked the couple of hundred yards home.

I was exhausted but I felt a sense of triumph and this trip has given me great confidence.

It's In The Bag!

This is a bit out of sequence but I think it's time I explained how one manages without a bladder. Two tubes normally connect your kidneys to your bladder, one on each side. When the bladder is removed these ureters connect to a urinary diversion instead which is made from a short section cut out of your bowel and pushed out through your abdomen to emerge a few inches to the right of your navel.

There is no storage device in this arrangement to replace the storage capacity of the bladder so the steady dribble of urine from the kidneys is collected in a urostomy/stoma bag attached to your skin over the "stoma" which looks a bit like a small raspberry. This bag fits neatly over the stoma and has quite a large surround of adhesive material to hold it in place. This bag can be emptied through a drain in the bottom plugged either by a bung or a tap according to the patient's choice.

This bag holds about 300ml which isn't much more than half a pint so needs emptying quite frequently but there is a way of increasing storage capacity by use of a "leg bag". Leg bags come in a few variations but the ones I use fit to the inside of my calf and are attached by two strips of velcro which hold it firmly against my leg. A tube connects to the drain on the stoma bag. The two bags together give me about 1 litre or about 1.75 pints of storage capacity which is quite useful if you are going to be away from a bathroom for several hours.

There is a third type of bag called a "night bag". This one sits on a stand beside your bed and is again connected by a pipe to the drain of the stoma bag. I forget exactly how much this one holds but it is pretty large and I reckon would probably handle a night in the pub quite well.

The hard thing to understand is that you never feel the need to go to the bathroom so you have to get in the habit of checking that your bag or bags are not too full fairly frequently. The large night bag is important as otherwise it's quite likely you would sleep past the time when the stoma bag filled up and you finished up lying in a pool of urine - an uncomfortable and embarrassing experience.

The leg and night bags can be used for a week before disposing of them but the stoma bag is best changed every two days. The rule here is that you will not be discharged from hospital until the "stoma nurse" is satisfied that you can change your bag.

The first step is to remove the old bag which is stuck to your skin quite firmly and removing it can be somewhat uncomfortable though I am told that after a time the skin toughens up and you hardly feel it. Next you use a wipe to wash the skin so as to remove all the remnants of the adhesive from the old bag and then dry the skin well with another wipe and finally a tissue. Remember that while you are doing this the stoma can discharge some urine so speed is quite important as is having something to clear up any escaping drops of urine.

Next you peel the backing off the new bag and place the hole that has been cut in it over the stoma then press down the adhesive so it sticks to your skin. The trick is to start pushing it down near the stoma itself so as to prevent any uring getting under the adhesive and then press down the outer edges. It appears that a better job is done if you then keep rubbing and pressing the bag with your warm hand to get some heat into the adhesive so it holds more firmly. I reckon that the change takes me about ten minutes though no doubt I will get faster with practice.

I have to admit to a few disasters some of which were not entirely my fault. The first accident was in hospital when the nurses were fitting my bags for me and emptying them, too. A physiotherapist had turned up to take me for a short walk and neither he nor I thought to check how full my leg bag was. So we set off along the corridor, off the ward and up a flight of stairs. He was pleased with my progress and as we set off back downstairs the full bag was putting me off balance and felt very awkward. We had just got back on the level again when the damned bag came off my leg and somehow I was trailing a stream of urine behind me as we headed back to my room. I was thoroughly disgusted and that was the first pair of pyjamas ruined that day. The lesson is always to empty your bag before going for a walk.

At home I disconnect my leg bag at night and connect a night bag directly to my stoma bag so gravity does its job without any fuss and all the urine drains smootly into the night bag. In hospital they were worried about a leg bag not being connected overnight and insisted on my using all three bags with the night bag connected to my leg bag. This just did not work for me for one reason or another and twice during the night I found myself lying in a pool of urine. In that one 24-hour period I got through 4 pairs of pyjamas.

After that I did not go to bed at night but just sat in my chair. This was not ideal but I simply could not get comfortable norcould I relax in that bed with the only plumbing arrangement they would allow. Since I came home I have not had one overnight mishap though I have had a couple during the day. Thank heavens for modern automatic washer-dryers!

I had changed my bag on the Monday just before leaving hospital and that one should have lasted until Wednesday however at about 11pm on Tuesday I became aware that I was leaking and that I would have to change bags. This was to be my first bag change at home and unsupervised and I was tired and had drunk a couple of stiff whiskies so the timing was not ideal. However I did the change and got into my pyjamas but decided not to go to bed for about an hour just to make sure that everything was secure. It wasn't as half an hour later I had wet pyjamas and had to do yet another bag change. This one did last me until Thursday morning when I had a visit from a stoma nurse who gave me some very useful hints on how to maximise the adhesive qualities of the bag. Sadly that bag too lasted only some 36 hours before leaking and I had begun to wonder if, in my case, I would need to change my bag every day. In fact since then I have obviously improved my technique and have had no leaks and the last two bags have easily lasted two days.

I think I can do this!

Coming Round

As I came round in the recovery area my first thought was that there was no pain. You have no idea what a huge relief that was. I felt quite good, all things considered, though the oxygen mask over my nose and mouth was a damned nuisance as it was very noisy and made hearing what was said to me difficult.

It seemed as though I had wires and tubes sticking out all over my body. There was a central line into my neck, another line in my hand, a drain for the operation wound and, of course, a bag to hold my urine draining into a larger vessel beside the bed.

was soon being wheeled down to the high dependency unit where patients spend up to two days until they are fit enough to return to the ward.

My wife had tried ringing the ward to find out how I was but without any success and finally my elder son took over and got through to the HDU where the nurse in charge said I was already fit enough to return to the ward as soon as a bed was available and asked him if he would like to talk to me. So I was quite amazed when a phone was thrust into my hand & I was able to talk to Ian. Later he said he was amazed at how bright I sounded and I actually did feel really good.

Shortly afterwards they exchange the oxygen mask for a pair of small tubes which fitted into my nostrils and that for me was a far more satisfactory system of delivering the oxygen.

The HDU was very relaxed with beds being well spaced compared to a standard ward and staff always in calling distance. It was a pretty pleasant environment.

The next day, Wednesday, I was helped out of bed and into a chair. That was not without problems as my right leg was numb from the epidural and collapsed under me. When the time came for me to get back into bed several hours later they used a sling to move me.

While I was out of bed my wife and son turned up to visit and I think they were both surprised to see me looking and sounding so well. Granted my temperature was slightly elevated and my blood oxygen a bit low unless I was using oxygen but I felt pretty good.

They had allowed me to take small sips of water immediately I came round and by Wednesday afternoon they said they needed to get some calories into me and gave me a very sweet apple flavoured drink to sip. Sadly that gave me terrible indigestion and I had a lot of reflux that night. I was reluctant to try it again the next day.

They were worried about my not eating so decided to feed me through a drip for a couple of days. Sadly the central line which had been fitted before I came round was not suitable for this so it had to be replaced. This procedure took about half an hour and although not painful was uncomfortable and tiring. When my visitors came that evening I was pretty washed out.

Late on Thursday night my old room on the ward was available & I moved out of the HDU and back to it.

Pain Control

As I said in my previous posting, I chose an epidural as my preferred method of pain control. It worked very well. I was completely pain free from the moment I came round after the operation until the epidural was removed on the following Sunday lunchtime.

Every few hours the nurses would check the area in which the pain was being control. This was done using a spray of very cold water. To begin with they would spray it on my hand so I could feel what it was really like then they would spray different parts of my body from my thigh up to my rib cage on both the right and left hand side of my body. I had to tell them how it felt. Where the anaesthetic was at its strongest I could feel absolutely nothing but where it was weak I could feel the spray. in some places it felt cool in other places where there was no pain control it felt very cold indeed.
The epidural can stay in place for five days so on the Sunday after my operation it had to be removed. I had been told that if I was still in pain after this withdrawal I could have pain control using a patient control morphine pump. To begin with there was no pain but after about an hour it increased and I asked for the patient controlled morphine pump. This was at about midday. It was then that things started to go wrong.

On Sundays the NHS seems to work on emergencies only basis. Doctors are thin on the ground and if they are required they take some time to turn up. The first thing that went wrong was that the line into my vein that would be used for the morphine collapsed and had to be replaced. It took ages for a pleasant but very young doctor to turn up to do it and he made a total pig's ear. When a little later a nurse came along to test it was faulty and he had to come back and do it again. Even when that was ready for the morphine that device itself was not available. It was now early evening and the only people with keys to the storeroom were three security guards and the duty manager. All these four people seem to be in the accident and emergency department involved in some sort of crisis and were inaccessible to my nurses. In addition two other nurses from the ward had been called away so they were short staffed. As the evening wore on the pain was getting worse and worse and I was getting quite desperate as to how it was to be control. Eventually they got the key to the storeroom and brought a pump to the ward but there was some incompatibility with the equipment on the ward so it was useless. Eventually they had to beg borrow or steal one from the emergency department. It was finally set up about midnight. I think there were lots of other little steps along the way but as the pain got worse they all sort of merged into one terrible experience. The trouble is, as one nurse explain ,that once the pain really gets a whole whatever they do is likely to be fairly ineffective as they are playing catch up.

Once the device was setup and I could administer a small dose of morphine myself every five minutes I could begin to get in control. It took about an hour before the pain became bearable again. After that I had very few problems. During the day on Monday I rarely press the little button to give me a shot of morphine and overnight on the Monday I used it only once. I was very happy for them to take it away on the Tuesday as I was quite convinced I didn't need it.

From then on pain control was limited to oral over the counter medicines such as paracetamol. And that was quite sufficient. Even now: I'll take the occasional tablet of pain killer when I ache a little bit.

The moral of this story is, I suppose, that nobody undergoing this operation should worry about the pain. However make sure that when the epidural is withdrawn the morphine pump is already available in case you need it. And of course don't let them do that on a Sunday.

Preparing For Surgery

My surgery were scheduled to take place on October 26 and I went into hospital on Sunday the 24. I had a light lunch at home before going to the hospital but that was my last food for several days.

Possibly the most unpleasnt part of the whole thing was the effects of the nuclear-strength laxatives they gave me to "clean out" my system so they could use a short section of my bowel to construct my urinary diversion. The first dose ofPicolax was on the Sunday aternoon and that was bad enough but the second dose on the Monday was just plain horrible. I sat on the toilet for about half an hour with water pouring out of me and leaving me dizzy, sweating like a pig and shiverig all at the same time. It was a thoroughly nasty experience.

I was encouraged to drink plenty of fluids throughout Monday until the early hours of Tuesday mourning. In fact it had been suggested by the anaesthetist at I should receive hydration via a drip during Monday night but instead of that I agreed that the night nurse would wake me up every hour and I would drink a glass of water.

He and I had also discussed what sort of pain rrelief I should use. He said he had very good results from epidurals in recent years. It appears that they are very effective in about 80% of cases and he prefers them because there are fewer complications post surgery than there are with the more traditional morphine base pays relief systems. He advised me to choose an epidral but said that a patient-controlled morphine system would immediately be available to me if the epidural proved ineffective in my case. I decided to accept his advice.

I pointed out to him that I am a terrible coward an that I regretted the fact that they don't give you a "pre-op" these days so that by the time you go upstairs you are as high as a kite. He promised that he would give me a shot of something that would take all my worries away and in the event he was as good as his word.

So at about 8 o'clock on Tuesday I was ready and they whelled my off to the operating suite.

A Bad Bag Day

This post is a little out of sequence as it refers to the day after my return home but I think it may be of interest so I'll pump it out.

I had fitted a new bag under supervision from the specialist stoma nurse just before being released from hospital on Monday and that bag should have been OK until Wednesday but late on Tuesday evening I noticed a bit of seepage around one edge of the bag. I was reluctant to try my first bag change at home so late at night and after a couple of stiff drinks but I really didn't think it would stay intact through the night so I pulled myself together and fitted a new bag. I had the sense to stay up for a while afterwards to make sure it was functioning properly and I was right to do so as about half an hour later that bag too was leaking a little.

So once more I dragged my tired brain into life and changed the bag again before collapsing into bed at about 1am. Luckily I had made a better job of it this time and it lasted through the night.

I was visited by my support stoma nurse on Wednesday lunchtime and I spotted that that damned bag was in trouble too but in many ways I was glad of that as it gave her a chance to watch me as I changed the bag and to pick up any things I was doing wrong.

Actually she did give me a couple of pointers about getting the most out of the adhesive that holds the bag to my skin and 24 hours later as I write this the bag I fitted then is still very secure.

Hopefully I have learned some useful lessons.

Going In, Surgery, Coming Home

It's done and I'm back home!!!

I can't follow the obvious pattern of making a post for each day as I wasn't in a position to take notes and by now some of the separate days have merged together in my memory so what I'll do is post stuff bit by bit over the next few days hitting a theme each time.

Today I'll give a general schedule of events and try to fill in details as we go on.

I went into hospital on October 24th, a Sunday, which was a day early but I was told that that would give me the best chance of a single room but much more about that later. Surgery was on Tuesday October 26th and I spent a couple of days in a high dependency unit until there was a bed available back on the ward so I didn't get back to my old room until late the Thursday evening. That would be October 28th, just in time for my birthday on the Friday.

The epidural pain-management system was disconnected on the Sunday, october 31st and I used a morphine based system until the Tuesday morning after which ordinary OTC tablets were quite adequate to control the pain.

Around the middle of that week they set me up with a leg bag so I could start to move around more freely and on friday November 5th I had my first lesson in bag-changing. I did my own bag changes over the weekend and on Monday 8th I demonstrated my skills to the specialist stoma nurse who sanctioned my release into the real world.


My son brought me home on Monday afternoon & I am already feeling so much better.
Since I came home I have been managing my bag, making mistakes but improving my overall fitness as I move around the house. I still get tired pretty easily but I know I'm on the way up again even though I am sure it will take a while.

I think that will do for today as I can feel myself tiring so more tomorrow.

Off We Go

As arranged by Fiona I rang Ward F3 this morning just after 10 and they tell me they have a bet. Christopher is going to give me a lift in there this afternoon so this will be my last entry here until I come home hopefully not too far in the future. I'm not looking forward to the next week I'll be pleased when it comes to the following weekend but it has to be so signing off now.

Any Day Now

It's Friday evening but this will probably be my last chance to write anything here before I go into hospital on Sunday. I'm amazed how very kind everybody is being. A Our next door neighbour has offered to give Ann lifts to the hospital when she wants to visit me; the people in the local shops have offered to deliver stuff if I'm not up to going there myself. It's really quite amazing how kind people can be.

Until the last few days I regarded this operation some sort of ending to my normal life and thought that it would leave me in a diminished state. The discomfort of the last couple of weeks caused by this cystitis has actually change my mind a bit. I now think of it as a new beginning with an end to all the pain and discomfort. I won't say I'm o looking o forward to it because that would be wrong but at least I'm looking on it as something which will lead to a positive outcome.

So this is goodbye for a few weeks.

The Preoperative Checks

Today I went to Whittington Hospital for my preoperative check. Ann came along as well because she needed to have her hearing aid serviced at the audiology department.

My appointment was for 1:30 and I was seen on time which is a very pleasant surprise with the NHS. There was an awful lot of form filling of course as they reviewed my general medical history and my current health but that wasn't too bad at all. Ann joined nurse Fiona and I and we had a long discussion about the operation and my after-care. I think Ann had most of her questions answered. I'm still horrified by the prospect of what I'm going to have to go through but I know there's no choice.

There was the usual blood samples urine samples ECG and smears taken to check for MRSA. Altogether it took about two hours.

The letter had said I would be admitted to hospital on Monday, 25 October but as you are aware having a single room is very important to me and Fiona said that I would have a much better chance of that if I was prepared to go in on the Sunday. While I don't like the idea of an extra day in hospital but on the other hand to get a single room it is probably worth it. So I have to ring the ward at 10 o'clock on Sunday morning to check that there is a bed available and if there is then I will go in at two o'clock.

Luckily my cystitis hasn't been quite so bad today otherwise I would have struggled to be in the taxi long enough to get there but as it turned out everything was okay.

Some Dates for My Diary

The letter from the hospital turned up the other day. I go into hospital on the Monday which is 25 October and the operation will take place on the Tuesday the 26th. In the meantime I have to go to Whittington Hospital for my preoperative checks tomorrow that's the 18th of October.Ann's friend Jill will come to stay with her on Saturday the 24th.

Things are getting close and I'll be glad when it's all over. I seem to be having a bad dose of cystitis at the moment and I'm very sore indeed. The surgery may be bad but at least this sort of pain w we'll N

A Date At Last!

At last I have a date for my operation. I have the preoperative check on October the 18th then I go into hospital for the surgery on the 26th. That probably means that they w will actually operate on the 27th or 28 and I'll be coming out of intensive care on my birthday, the 29th. Well okay I'd rather not do that but I want this operation ot the site just have to put up with it.

Mostly Good News

This morning Ann and I went to Wythenshawe hospital to see Dr. Bootan to find out the results of the PET scan I had at the Christie last week. We got there about a quarter of an hour early and of course we were seen about a quarter hour late. Still that wasn't too bad. After all this is the NHS.

When I found that Dr. Bootan was accompanied by a Macmillan nurse I was concerned. For those who don't know Macmillan nurses give support and advice counselling to people suffering from cancer and their families. That sounded like bad news that she was there. Anyway he examined me sounded my chest got me to do the usual D deep breathing exercises then went to read through the report on the PET scan.

Actually thinks look pretty good. There are three nodules in my lungs two of them are completely inactive and inert whereas the third one shows a little and very little activity. This however is not sufficient to cause any sort of panic. They will do nothing about it but they will monitor it. I need to go back and have another CT scan and another consultation in December. Until then we can concentrate on getting my bladder sorted out.

PET scan

Today was the day for my PET scan. That meant I could have nothing to eat or drink other than water until the process was complete. I had eaten some crisps before I went o bed last night but that didn't stop me feeling pretty hungry this morning. The prohibition was not to eat or drink for six hours before the scan. Luckily my appointment was for 9:30. I would have hated it had it been made for late morning or even worse in the afternoon.

I had thought that the prohibition was so that nothing I ate or drank could interfere with the scan but that turned out not to be the case. The process uses a radioactive glucose as a tracer within your system. It's important that your blood sugar level be very low so that your body is forced to absorb the radioactive glucose that they inject into you fairly quickly and comprehensively. You learn something new every day. I think they have special procedures for the diabetics.

I arrived a good quarter hour early at the main reception desk and they called a porter to guide me through to the radioactive isotope department. I waited and waited but nobody came. I was getting anxious as my appointment time was approaching when a lady came and asked for the same department. I asked if she minded if I walked along with her and she agreed. So I got there on time.

I was called in pretty much straight away and after the usual form filling and explanation of what was going to happen I was taken into a waiting room where a blood sample was taken to check my sugar level and then I was injected with the radioactive glucose.

Once that was done I was left to listen to my talking book for an hour until my body had fully absorbed the glucose. But it was very very comfortable, a recliner in fact, and I was encouraged to doze off but it was a little early in the day even for me to go to sleep.

When the hour was over I was taken through to the scanning room. The process took about 20 minutes that was painless and quiet. In fact I actually did doze off for a few minutes while the scanner was running.

While I waited for them to check that everything had worked okay they provided me with a sandwich and a very large mug of coffee for which I was very grateful.

They ordered me a taxi and I was home around midday.

Since then I have eaten and drunk a lot more and have more than made up for my missing breakfast.

Dates For my diary

On Thursday, September 16th at 9.30 I have to be at the Christie for the PET scan. The following Tuesday, that's the 21st, I have to see Dr. B at Wythenshawe in the Northwest London apartment.

For those who have never heard of a caps PET scan here's a clue


http://www.cancerhelp.org.uk/about-cancer/tests/pet-scan


I am not allowed to have anything to eat and only water to drink for six hours before I have a scan. I gather they will inject me with some mildly radioactive substance so that it shows up all the details when the scan is done. It said there are no after-effects so I hope they're right. Anyway it'll be good to get the results on the 21st because the one thing I need now is some certainty. I am sick of "maybe this" or "maybe that".

Even if the worst is true and the nodules are cancerous at least they have found them early and hopefully early enough so that they can deal with them.

More Confusion

So today at just before eleven I was sitting waiting for my appointment when my mobile rang. "Hello, I'm Dr. B's secretary at Wythenshawe hospital. I'm ringing to tell you an appointment has been made for you to see Dr. B next Thursday at 1.30."

I was baffled and asked what it was about. It appeared that I had been referred to Dr. B by Dr. C, Mr R's registrar but the secretary knew no more than that.

Nurse Fiona heard my side of the call and quickly ushered me in to see Dr. C who explained what it was about and apologised that his colleague, Dr. B had been so quick off the mark. It appears that my CT scan the other week showed everything in my bladder and kidneys was as expected but that something had been spotted in my lungs which required investigation. The CT scan had spotted two small nodules towards the base of my left lung and one in my right lung. At this stage their nature was unknown and a PET scan was needed to show what they are. Dr. B, it appears is the lung cancer consultant. this does not mean that these damned things *are* malignant, of course, but that possibility does exist and they need to find out what they're dealing with and how to treat it.

There is currently no date for this PET scan and I don't think there is much point in talking to Dr. B until he has the results so we have something concrete to discuss.

I suppose if the worst comes to pass it's even more surgery but we're a long way off that I reckon. I don't have a cough or chest pains or any shortness of breath so I reckon that even if these things are malignant they are probably at an early stage and maybe more chemo or radiotherapy can kill them.

Oh, and it looks as if I can have a single room when I do have my surgery which is now delayed, of course.

Another Appointment

Mr. R's secretary rang me yesterday and I have an appointment for Friday morning. Hopefully I will get a date for my surgery.

I don't know why but the call filled me with dread. I suddenly had visions of his telling me that the cancer had spread to both kidneys and that there was now nothing he could do and that I had maybe six months. Even though I knew that that was utterly unreasonable the fear lasted all day. I suppose it's because I was so confident last time and had my hopes rudely shattered and now I think all the news is always going to be bad.

I also had an e-mail from nurse Fiona saying a single room may be a possibility at Wythenshawe so we'll have to discuss that on Friday, too.

The Final Scan?

eOn Friday I had another scan, CT this time. In all I had to spend about 2 hours at Wythenshawe drinking water, passing it, being scanned once, being injectd witha dye which is opaque to X-rays, having an IV dripping the same stuff intome and then a final set of pictures.

The dye I gather does affect some people so they kept me for about 20 minutes after the scan to make sure I wasn't having an adverse reaction before I could get a cab home. Although I didn't have a bad reaction to it I was very tired yesterday falling asleep if I sat down for a few minutes. Mind you, as Ann always reminds me, it doesn't take a lot to put me to sleep.

Today I'm much better.

Better News

Fiona has managed to bring forward the CT scan to Friday 20th August which is much better. Hopefully I can still have the surgery in September.

Had she not been able to arrange an earlier date I would have tried to arrange the scan privately. I doubt if it would have cost too much.

I just wish I could afford to have the whole thing done privately but no chance.

Delayed

I was out and about on Friday when I received a phone call from Fiona M, the nurse, telling me that Mr. R had seen the MRI scan results but wanted a CT scan of my kidneys before operating and that I would get a letter from him explaining this and also I should get an appointment for the scan which she wanted done pretty urgently so as not to delay surgery. Well, yesterday, Saturday, I had both the letter from Mr R and an appointment for the new scan but not until September 16th which seems far too far away. I want to be having the surgery by then. Anyway, I've sent Fiona an e-mail telling her this as she requested & I'll probably ring her tomorrow as well. If she can't get that date brought forward I'll seriously think about having it done privately. I can't afford the surgery privately, of course, but the scan shouldn't be too expensive.

A Matter Of Confidence

Last Thursday we had a visit from a “stoma nurse”. If you’re wondering what on earth a “stoma” is, it’s also known as a “urinary diversion”. When your bladder is removed they use a section of the small bowel to form an alternative way for urine to leave your body. They connect the tubes from your kidneys to one end of it and bring the other end to the surface of your stomach near your navel where it sits proud and a bag can be placed over it to collect the urine.

Exciting stuff!

I’m going to have to learn to manage one of those bags, to change it, to empty it and so on before they’ll let me out of hospital and then when I get home I’ll be on my own except, of course, for Ann.

The nurse was actually very good. I already knew quite a bit of what she told us from Stephen but Ann found it interesting and she is now much less worried about how we will cope.

We discussed the unpleasant inevitability that I will make mistakes and the damned thing will leak in bed or into my clothes in the early days because there’s no doubt it will happen until I really become expert but that will happen.

The most important thing seems to be to gain confidence as the very prospect of having a leak in a public place is so embarrassing many people simply go into virtual seclusion so worried are they.

Enough of that for now though no doubt there will be more later.

On Friday I went for another MRI scan and now we just await the results and hopefully a date for the surgery.

I now want it as soon as possible. If it’s going to happen then let’s just get it over with.

A Different World

Yesterday morning I woke up happy and cheerful thinking that I would soon officially be able to put the nightmare of cancer behind me. I was slowly regaining my energy, the bladder irritation caused by the cystoscopy was fading and I had learned to manage the occasional flare up of discomfort and inflammation that was making walking around so uncomfortable. Also my nocturnal trips to the bathroom had reduced to only two or, at most, three a night.

In brief, everything was looking good. As I waited for my cab to take me to the hospital for my appointment the sun was out and it was a lovely warm morning but without the humidity that has plagued us quite a bit this last couple of weeks. My thoughts were on how I was going to enjoy telling friends and family how I was clear and that the rest of my life lay in front of me.

This morning I woke up feeling like a tired and defeated old man.

I suspect that my sleep last night was not very restful though I certainly had been asleep but today, if I sit in one spot too long, I drift off to sleep. I keep having to rewind the book I’m listening to as I’ve dozed off and missed a few minutes.

I did my usual shopping trip to the Village this morning but my feet were dragging and I didn’t enjoy it even though it was a lovely Summer morning and it took far longer than it usually does. I expected everybody to feel so sorry for my bad news but of course nobody was since nobody knew and they probably thought I looked damned miserable because I had drunk too much last night. So I felt let down that nobody in the whole world cared which is totally unreasonable of course.

I don’t have much appetite either. Yesterday evening I forced half my dinner down and threw the rest away which is pretty unusual for me. This morning I wasn’t hungry but I forced down a light breakfast and, later, some lunch.

So, as you can tell, I am feeling thoroughly sorry for myself but that can’t be allowed to last. I certainly can’t spend the next few months feeling as I did this morning with that huge dark void filling my head and the weight of the universe on my shoulders and adding at least a hundred years to my age. This afternoon I have cheered up a bit. Maybe I needed those naps to make up for poor quality sleep last night and maybe the improved mood won’t last but for now I at least had the energy to bore you with this bit of self-indulgent whingeing.

What A Bummer!

On June 1st I had my check up, a cystoscopy. The next day a member of the medical team said he had seen nothing that screamed “cancer” at him but naturally they needed to see the results of the examination of the biopsy samples to be sure. I was encouraged that they were not treating the analysis as urgent and I was greatly cheered.

OK, that procedure set off a load of irritation in my urinary system again and I was up five or six times during the night and swallowing a lot of pain killers but I was damned optimistic.

A couple of weeks ago Mr R’s secretary rang me to give me an appointment date to get the results and as that date was a couple of weeks ahead I was further reassured. After all, this is cancer and if there was a problem they would want to act quickly.

This morning I attended for that appointment feeling very confident though of course I knew there was always the chance of bad news and it was bad news that turned up.

There is still cancer in the lining of my bladder. OK, it’s nothing like the huge tumour that was there last year and there is no immediate danger but it can’t be left unattended.

We talked through various options or, at least, I looked at possible ways of avoiding surgery, but all other options closed off one by one. Dr. W. from the Christie had been involved in the discussions and had said chemo and radiation had done all they could.
There was a possible treatment using a diluted TB vaccine applied directly to the interior of my bladder in what sounded like a rather unpleasant procedure to be repeated once a week for about six weeks but even that would only delay not avoid surgery so I am left with the stark choice of radical surgery to remove my bladder, my prostate and a few other bits and pieces or letting cancer run its course.

Much as the prospect of major surgery and pissing into a stoma bag for the rest of my life is deeply unattractive the prospect of the rest of my life being quite short and painful is even less attractive so surgery it will be.
There is, it appears, no rush and Mr R wants to see the results of an MRI scan first to help guide his hand so surgery is likely to be in September.

I remember saying and possibly writing last year that I wanted to go to sleep until Christmas when it was all over. Well, I’m saying it again now.

Roll on Christmas when hopefully this will be all over.

My Three Month Check

At last, my three-month review!

Well, it’s actually been seven months but never mind that for now as it is just good that it’s finally happened.

Over the months I have had some symptoms and have worried a great deal about them. Were they the return of my tumor or the result of tissue damage caused by radiation? At one point I thought I might have a bladder infection and took a urine sample to my GP for analysis. There was no sign of a bacterial problem but both my red and white cell counts were a little high. I queried that with her as I had been told that an elevated white cell count was a marker for cancer but she reassured me. This sample had a very slightly elevated level something like 21 when normal is 17 whereas last year my white cell count was in the thousands. I sighed with relief and as she had suggested that I just had some inflammation in my urinary tract I took ibuprofen for a week and that seemed to be effective.

Anyway I went into Wythenshawe on Monday in preparation for the procedure on Tuesday June 1st and I was pleasantly surprised about how good the unit was. I was well-briefed and my concerns and worries were answered with sensitivity. I was given a choice of a general or an epidural and opted for the former as when somebody is doing horrible things to a very sensitive and important bit of my anatomy I’d rather know nothing about it.

Mr. R, the surgeon consultant in charge I had met last year and had found him rather intimidating but not this time. We had a very useful conversation in which he explained what he was looking for and confirmed what my GP had said about inflammation being as a result of damage done by the radiotherapy.

When I came round one of the team explained to me that they had found some redness (not unexpected) and a thicker than normal wall on one side of the bladder which they had “shaved) and taken some samples for examination. As a result I was once more stuck in overnight as they had to fit a catheter which is what I had been dreading given the burning agony I suffered last year as one was removed from my very sore and painful urethra.

When it came time to remove it they were excellent giving me some strong pain-killers first and using an analgesic cream all over the sensitive member. It was uncomfortable but certainly not as dreadful as last time.

Naturally they will not let you out until they are sure your bladder is working and you are passing water adequately and there we hit problems. They usually get you to urinate into a bottle so they can measure the output and compare it to what you have drunk. The first two bottles had a bare dribble in them and then when I needed to go again there was nobody about so I had no bottle. So my first two real pees went unmeasured and they just didn’t believe me and insisted on doing an ultrasound scan of my bladder to see how much it contained. During the procedure they had measured my bladder capacity and ascertained it to be about 300ml. This ultrasound scan showed my bladder contained 300ml of urine and that, they said, was not safe and they said I should not leave until they were sure I was emptying my bladder at least as fast as my kidneys were filling it.

ReluctantlyI hung around trying to pee into their bottles but urination was uncomfortable and I wasn’t having too much success. I drank a lot and managed 100ml and a nurse, J, ran the scan again getting a first reading of 175ml and a second reading of 240. they said that was still not good enough & I was getting a bit angry. At about 8pm I managed another bottle of 100ml and J did the scan again. This time he got a reading of 400ml which, as I pointed out, was utterly ridiculous given that my bladder capacity was only 300ml and I had just peed 100ml. He re-booted the scanner and did it again getting readings of 300ml and 340ml. At that point I suggested he should chuck the scanner in the bin as the sort of variations he was getting meant that you really couldn’t rely on anything it said. I also questioned the other nurse’s reading of 300ml earlier in the day as I reckoned that was also likely to have been only one of several highly variable scores. J advised me to drink some hot water as a way of loosening up the tissues, wait until I was really bursting then use a bottle again. I did that and just after 9pm managed a further 150ml. At that point I left the hospital as I reckoned I trusted my own knowledge of the way my bladder works more than I trusted their damned scanner.

So I’m home and feeling a bit sore but very relieved it’s over.

I won’t hear from them for about three weeks as the biopsy analysis isn’t thought of as urgent which of itself is reassuring and the doctor of the team that I spoke too said there was certainly nothing they saw that screamed “cancer” to him.

Neglect

It’s been a long time since I added anything and I’m feeling a bit guilty about that.

There are a couple of reasons for my neglect the first being that in some respects nothing of significance has happened. As I understood it my first check using a cystscope should have been tree months after my final radiotherapy session in early November but so far that check hasn’t taken place. The second reason for neglecting this place has been that I didn’t want it to just be a day-by-day description of symptoms and worries.

In the last few weeks I have heard that a friend in Arizona is suffering from terminal lung cancer and has only a few months to live and so far I have not managed to talk to him which makes me so sad. A vigorous person with a busy life is now resigned to his approaching end and is taking it far better than I think I could.

Anyway back to my check up. Towards the end of February when I felt the check was several weeks overdue I started to chase it up. As you know, my opinion of the Christie hospital is that it is a superb place, head and shoulders above the rest of the NHS, and I think I wrote of my concerns that after the conclusion of my radiotherapy I would be returned to the “bog standard” NHS for my care. I didn’t even know for sure which hospital was now responsible so I rang Dr. W’s secretary to find that out. She said it was Mr R at Wythenshawe and agreed to contact his secretary on my behalf. After all, if a cock up had occuredI reckon two people inside the system can remedy that more easily without either getting defensive about it. She rang me back and told me all was in hand.

I gave it another ten days or sobut had still not heard anything from Wythenshawe so I rang Mr. R’s secretary myself. She said my check was due in May, six months after the end of treatment. I queried this as I am damned sure I was told that it should be carried out three months after the end of treatment and she assured me all was OK.

In a way I am relieved as I am not looking forward to this procedure but, on the other hand, I do want to know one way or another what the outcome from last year’s treatments has been.

This is especially true as I am still getting symptoms which may be long-term side effects of the punishing chemo and radiotherapies or may be an indication that the cancer is growing again. Most of the time I persuade myself that it’s the former but there is always a nagging doubt at the back of my mind especially this week when I had a really uncomfortable flare-up of painful urination, a very sensitive penis and I was constantly so damned tired.

It’s passing now, thank goodness, so my confidence is rising again but a couple of days ago I was pretty frightened as all the old symptoms seemed to be returning.

Anyway to end on a positive note Spring appears to have arrived and some warm sunshine will cheer everybody up after the coldest Winter for about thirty years.

I Am Just So Lucky

I am just so lucky!

Over the last couple of months I’ve made periodic attempts to ring Stephen on his mobile but without any success. I had left it for a while as I didn’t want to intrude into his problems but I respect him and Yvonne, his wife, a great deal and as the weeks passed with no word from him Ann and I have been increasingly worried.

I rang just now and after a long time a young woman, Stephen’s daughter as it turned out, answered and when I asked for Stephen handed the phone to Yvonne.

Stephen died about three weeks ago, just before Christmas. There is nothing more to say except to repeat that I am just so damned lucky and learning of his death makes me feel just a bit guilty for that luck.