Reasons to be cheerful - Part One.

Since the last entry I have had two nights of waking more often but nothing like as bad as before and the second was last night so that might have been anxiety about today's chemo session. I'm still rarely needing to resort to pain control during the day. I do take a slow release ibuprofen in the evening most days as the discomfort creeps up during the day.

My oncology appointment was with a Practice Nurse and he was very thorough. I came out feeling that things were looking good. The only slight concern was that where the cannula was inserted the skin turned purple after about ten days, felt hot and then began to itch for a day or so. It's still a bit red but apart from that it's not causing any problems.

So I turned up for 9:00 am today (11th April) and was called in at 9:15. This time I was taken into a communal room with six or seven stations.

As I was first in I got to choose where to sit, then it was the poke around looking for a working vein game.

Three different members of staff had a go this time and the ninth attempt was successful. There was more talk about a PICC and more refusal from yours truly. What was amusing is that we were all apologising to each other; me for having difficult to find veins and the staff for failing to make a connection. When I finally left I suggested that they have a look for when I'm back next and book some leave.

After an hour of stabbing away at likely places on both hands, following sessions of me sitting with my hands in bowls of very hot water, I asked for a time-out and went for a wander around outside for twenty minutes.

It may have done the trick, or it was that the next staff member struck lucky because she only made two attempts and the second struck gold.

Plugged in and ready to go.

It turns out that my regime of not consuming fluids to get some control over my bladder isn't helping. Being properly hydrated will make finding a vein near the necessary valve (to avoid back-flow) should make things easier. So I have to balance the digging around with the likelihood of wetting myself!

So by about 11:00 am I was hooked-up and sluiced through with saline solution, then two doses of preparatory steroids before the chemotherapy gloop. 

It's possible to sit and watch the readout displaying the delivery but it's a bit like clock watching so I plug-in my iPod and get stuck into my book.

At one point I put my book down, closed my eyes and got lost in the music. I was surprised to be prodded by a concerned staff member because she noticed tears streaming down my cheeks. She was worried that I was in trouble. I'm so used to Wagner moving me to tears that I hadn't noticed. Poor girl was probably more concerned that someone could be moved by Lohengrin than relieved to find that I was in fact okay!

So in due course I was sluiced out finally with another saline solution and about to be sent on my way when I remembered to ask if the PSA result was available.

You may recall that in February the PSA was up to 741. As of last Wednesday it was 178. That it has fallen wasn't a huge surprise, things have been good (relatively speaking) lately and I knew that there must have been an improvement but I hadn't dreamed of hoping for such a dramatic fall in the score.

It remains to be seen if the rate drops as far as quickly in future but I'll be happy if it just keeps going down. If further falls mean that I regain more bladder control, I'll be very happy. What the long-term treatment will be is anyone's guess, I just have to wait and see if the secondary tumours are also being affected by the chemo. The fact that I rarely notice the pain in my hip and femur could be another reason to be cheerful but best not jump to too many conclusions. Only further full body X-Ray will show and I anticipate that it won't be done until or if the PSA continues to fall.

To celebrate I went for lunch before my taste buds disappear again in the next few hours. It will be interesting to see if the side effects become cumulative as can happen. Whatever happens in that respect, feeling this good is not something that I'd anticipated so I'll not moan about the side effects.

My next session is at 2.30: pm on Friday 2nd May, preceded by another blood sample and oncology check-up on the 29th and 30th of April respectively. I'll update this with a general synopsis before then.

Second Chemo

It's been over a week since my second session. I wanted to let things settle down before updating this.

In the week before the session I had to provide a blood sample and following that, a consultation to discuss how I was affected by the chemotherapy. The blood sample showed that things were okay to go ahead with the next session. This will be repeated before each new session.

This time, the process itself was easier, knowing what to expect helped and it only took two attempts to find a vein this time. Obviously, this time there was no need to go through all the possible side-effects but there was still a need to keep me under observation in case of an allergic reaction. Apparently, the risk of reaction passes with the second session so next time I won't have to be kept under obs in future.

There was a little discomfort when the chemo jollop was going in. It was solved by a hot blanket applied to my hand. Apparently it's caused by the fact that the chemo solution has to be stored chilled and the temperature difference is what causes the discomfort.

I took my iPod and sat reading for the two hours or so that the session took. I felt no real effects for several hours and then it was mainly tiredness that struck. Within twenty-four hours I felt washed out and my taste buds once again disappeared entirely.

The tiredness was exacerbated by my inability to sleep more than an hour at most. The bladder issues have been going on for a long time now and the pain was becoming worse. On top of that, the need to urinate was becoming more insistent and urgent. It just seemed a vicious circle, the more my sleep was interrupted, the more tired I became, the more pain when urinating, the less I was able to get back to sleep and it has to be said, the less inclined I felt to go back to sleep because I knew that I'd wake in an hour at best for it all to start again.

The loss of taste was pretty unpleasant again. At one point I thought that perhaps some spicy food would be an answer. I had a curry delivered and it smelt wonderful. Alas it tasted of nothing and I gave up after three mouthfuls.

Oddly, I found myself fantasising about food.

I've been disinclined to get too hopeful when things started to improve around five days after the session because so far improvements have often been short-lived. However, since Wednesday, there's been a massive change for the better. It began that night, I woke once and that after four hours. It was my bladder that woke me but without the degree of pain and discomfort. It wasn't without discomfort but it took a lot less time to feel able to go back to sleep. What's more, I did go straight back to sleep and for another uninterrupted three hours.

Knowing that in the past, this sort of improvement didn't last more than a couple of days at best, I've been reluctant to get too enthusiastic. Well now I feel able to report that things have steadily improved day-on-day and night-on-night come to that. I haven't woken more than once since. Emptying my bladder isn't normal but it's largely pain free, still some discomfort at times but not so that it wakes me so fully. The urgency is still there but the period between needing to urinate is getting longer.

I don't know if it's the accumulated loss of sleep but since Wednesday, I've slept and slept. It's not that I feel as tired or weary as I was, more that I just want to sleep. Between sleeping I feel pretty perky but then suddenly, after a few hours I can sleep instantly and no matter how long or often I sleep during the day, I still sleep at night and wake up feeling nearly refreshed. My sense of taste has been returning steadily too.

I haven't felt this good since I don't know when. If the price of each chemo session is a week or so of feeling rough and total loss of taste followed by this level of improvement, I'll be happy with that. If it gets better with each session, that would be a huge bonus.

I'm due another dose of the hormone blocker on the 2nd of April, provide another pre-session blood sample on the 8th, an oncology consultation on the 9th and chemo number three on Friday 11th.

First Chemotherapy

It's been a few days since I submitted to my first chemo session. I thought that I'd leave it before detailing the experience to allow things to settle.

On the 28th February, I presented myself at the allotted time and place. There was an hour delay but eventually I was taken into a treatment room, seated and taken through the procedure in some detail and the all the possible side-effects. These were not news as I'd read and re-read the information given to me when I first signed the necessary paperwork. It was still good to hear the details and to be able to get clarification where required.

Although the information states that the chemo takes about an hour, this doesn't take account of the other parts of the procedure.

Initially the problem is a perennial one for me, finding a vein, or at least a suitable one. After three different members of staff, two sessions with my hands in bowls of hot water and at least five attempts to get the drip to work, a suitable connection was made on the back of my right hand.

First off was a saline solution. This took about 20 minutes to be pumped in. Next, a large syringe of a steroid was manually pumped in and then the chemo solution was hooked-up. The chemo itself is what takes about an hour to be pumped in. In my case I had an extra ten minutes to fully empty the bag. After that a second saline drip was administered.

The actual experience wasn't uncomfortable, it was just a bit strange to be hooked-up to a machine that was whirring and pumping.

At one point when searching for a vein, it was discussed that it might be better to send me away and return at some stage to fit a PICC (Peripherally Inserted Central Catheter). This would be in an upper arm and allow the connection to be made and re-made over the chemo course.

I wasn't happy to do this because it needs regular, weekly cleaning at the oncology department and much messing about with dressings etc. I'm happy to let the staff dig away for a vein.

In addition to the three-day course of steroids I have to take (on the day before, the day of the chemo and the day after), I was given a supply of more top-up pills to take between sessions. I was also given something to counter sickness or vomiting (not used so far).

So how's it been?

Well I can say that so far even the most common side-effect, tingling fingertips and toes, have not manifest. The only noticeable effects are that my appetite has disappeared along with my taste buds. It's not a total loss, it's more like eating food in its wrapper. There's a hint of flavour but my tongue and mouth feels as though it's coated in plastic. There's also a strange, slightly unpleasant taste in my mouth the whole time. All this adds to the lack of interest in eating.

It's still early days. Some of the other side-effects may appear, the loss of taste may dissipate. I have an appointment with my oncologist on the 18th of March. This, if my memory serves me correctly (there was a lot of information to assimilate) is a review of the treatment. I think that it was mentioned that the dose of chemo might be reduced if the side-effects were particularly strong. I don't know if the reverse is true.

There's also a blood test to do before the next chemo session which is set for 21st March.

I've invested in a digital thermometer to monitor my temperature. I've been given a temperature above which I must call oncology in normal hours or dial the emergency number at any other time. This is because the chemo weakens the immune system and what would normally not be much of an issue can become quite complicated.

Well that's the nuts & bolts of the procedure. I'm not feeling much different, not that I expected to suddenly feel better at this stage. It may be a temporary thing but I've found that I need recourse to the pain killers a bit less frequently. Sleep is still the most obvious issue or lack of it to be precise. The chemo can disrupt sleep but my main problem is still the need to pee at very short notice and sometimes as frequently as every fifteen minutes. That's the extreme. Usually it's hourly and it wakes me almost on the dot.

I'll admit to finding it pretty dispiriting. Nights are becoming something I approach with a little dread. The main reason why I've opted to take the chemo route is that I'm hoping that a few sessions might just start to offer some relief in this aspect. I really hope so.

Well That Explains It!

In the past few weeks I've been needing to resort to the pain killers more frequently, sometimes every two hours, more often every three.

Last week I supplied a blood sample in time for my scheduled oncology appointment. The result explains why I've needed the increase in pain killers. It also explains why urinating has become steadily more of an issue both in frequency and discomfort.

Today I was told my current PSA score. It has jumped up significantly. As of the latest test it's 740 (seven hundred and forty). Quite a jump and fits with how things have been lately.

I have decided to start chemotherapy and I have a date for the first session, 28th February. So I've collected my first prescription of steroid tablets that I have to take the day before, on the day and the day after. They are to boost my immune system which is likely to take a hit from the chemotherapy.

Still, there is some good news. When I gave the blood sample my pulse rate and blood pressure were checked and both are very healthy (apparently). Having given a blood sample recently I didn't have to give one today (presumably to check for anything that might interfere with the chemo) but I did have to have my nose swabbed for MRSA. I offered my handkerchief as an alternative to the swab but it was declined.

From what I know so far, the chemo sessions will last an hour and be delivered intravenously. The stuff in question is called Docetaxel (Taxotere), Here's what Cancer Research UK say about it:

http://www.cancerresearchuk.org/cancer-help/about-cancer/treatment/cancer-drugs/docetaxel

I only have the first appointment, so I anticipate that after each session, depending upon there being no problems (it seems that a reaction to the stuff is possible), I'll be given the next appointment and another prescription for the steroids. It's likely to be three weeks between sessions as it takes about that length of time to fully recover. That, like the list of possible side-effects, is probably the worst case scenario.

Interesting to find that the stuff was first developed from Yew tree needles.

Reading up has helped me to understand the process. In simple terms, cancer cells all go through a dormant phase. It's when in this phase that the chemo is supposed to kill the cancer cells or at least neutralise them. As not all the cancer cells are in the same phase of this dormancy/growth cycle, the treatment is spread over a long enough period to try and catch them all at some time while they're having a kip.

Time will tell as they say.

More Drugs

I thought that I'd update everyone on how the new regime has been working.

The cocktail of codeine, paracetamol and ibuprofen was nothing short of revelatory, at first. I say "at first" because after a couple of days it was apparent that there was a shortfall in the efficacy. In fact it sort of highlighted another issue.

The problem was that the dose I was given meant that I had four occasions per twenty-four hour period when I was to swallow the cocktail. The dosage was based upon an assumption that my waking hours would follow a fairly normal pattern. Four doses would probably provide enough relief during fourteen to sixteen waking hours following a normal period of sleep. The problem is that my sleep patterns are not normal.

As I've mentioned, my bladder wakes me regularly. These days it's become routine that no matter what time I go to bed at night or how tired I may be, I will be woken at hourly intervals needing to pee at least three times. I may then get as much as two hours further if I'm lucky but more often, owing to the time that it takes to get started let alone accomplish the mission, after the third visit I'm so awake that it's just not possible to return to the land of Nod.

It isn't just being awake, it's that the pain that accompanies urinating in these circumstances isn't dulled by the cocktail. It doesn't just end when I've finished peeing either. So when I've had a few hours sleep, by the third of fourth visit I'm no longer sleepy enough to block out the discomfort and return to sleep.

I usually get up, plug-in my iPod, slip my earphones on, sit with a book and listen to music for a couple of hours. At some stage after waking I need to take the painkillers for the other sources of discomfort. I'd then, later in the day, find that my ration of pills is not fully covering the need.

Well, last week when I had my scheduled hormone blocker injection, the GP practice nurse (Karen) asked how things were going as usual especially with regard to the added codeine and paracetamol. I outlined all the above and she said that I should speak to the doctor. She mentioned that he'd just recently completed further training in pain management and was now the leading GP in the area on the subject.

I've since seen him and as a result my prescription has been increased to cover my waking hours. He explained in some detail how the various painkillers I'm taking work. Codeine and paracetamol both work by blocking the pain receptors in the brain. The brufen does too but also works as an anti-inflammatory which is useful in combating the pain from the secondary cancers in particular.

He said that the pain I'm getting in the region of the perineum which extends through the urethra and it has to be mentioned (sorry for those who don't like anything scatalogical) to the rectum too, is of a different nature and needs a different pain control method.

I asked if the neural pain killers would be affected by the patient's mental condition, stress, depression or tiredness. The answer was yes and that's why he wanted to work on the other pain because left alone it would probably reduce the efficacy of the pain killers.

He has prescribed Gabapentin (Neurontin)  http://en.wikipedia.org/wiki/Gabapentin

If you read the above link you'll find that it has been found to combat neuropathic pain associated with cancer.

It's now been twenty-four hours since I started on the new cocktail of 400mg Ibuprofen, 500mg paracetamol, 30mg codeine and 100mg Neurontin. Just before bed I substitute the 400mg Ibuprofen for the 800mg brufen retard that lasts most of the night. I've been taking this combination for only a day so far so I'm loathe to say that it's the answer but this is the first time for many months that I can remember feeling relatively pain free. Dr Campbell said that the Neurontin might not work, that I can safely raise the dose if there was no obvious relief but as I write, it seems to be doing the job. It is nice to know that if I need to I can take more.

I can report that on the minimum dose the constant discomfort in the region of the primary cancer is reduced significantly and so far (last night) urinating wasn't as uncomfortable as it has recently been but it's still not pain free.

A return appointment has been made for the 27th January to discuss and review the pain management regime.

We also discussed the chemotherapy option. I'll have made up my mind whether to go ahead with it by next month when I'm due back at the oncology department.

Fingers-crossed, this uplifting feeling I have of being in less discomfort will last. I'll admit to becoming a bit low in spirit in the past few months from time to time. Today has been the first since I can remember that I haven't been given a sharp reminder by Charlie that he's lurking.

Cocktails

It's a bit scary how easily one can become accustomed to something, how it's possible to become habituated to discomfort even pain.

On Boxing Day I had the opportunity to speak to a family member who gave me some very helpful advice. The nub of this was that there's no need to be in pain.

I've taken her advice and spoken to my doctor. His advice and recommendation was exactly what I was told on Boxing Day. He's prescribed codeine which I take with paracetamol and the high dose ibuprofen. It's been a few days now and this cocktail has relieved me of about 80% of the discomfort I'd become accustomed to. The added bonus is that I'm taking less ibuprofen as a result.

So far the relief has given me bit of a boost, it's nice to be without the constant background pain but as with everything there is a price. I do feel giddy at times and suffer from a little nausea occasionally. So far the other known side effects, constipation and drowsiness, haven't made themselves known.

So now it's been a week on this cocktail, I've just today renewed my prescriptions and I can report that the benefits have tailed-off slightly. The codeine is prescribed as four a day and I've been taking a paracetamol and an ibuprofen at the same time. For the first few days this worked very well but now I'm finding that to spread the dose over the waking hours means that I have a shortfall of an hour or so between taking them. I think that I will shorten the time between the ibuprofen again and see what that does. It will mean getting back to near the maximum recommended dosage.

I'm due another hormone injection in two days (8th Jan) and will make an appointment for another PSA blood sample to be taken a few days before my next oncology appointment on the 11th of February. Between now and then I'll give Chemotherapy more thought, I anticipate that it will be offered again at that appointment.

It will be interesting to see what a boost of the hormone blocker does. When it was working well it was accompanied by the hot flushes. Since then, the flushes have tailed off. They still occur but not as frequently and not as bad. I guess that their occurrence means that it is working to some degree?

The additional pain relief unfortunately does nothing for the need to urinate frequently nor does it seem to relieve the pain that accompanies it. I'll mention that when I see the oncologist next month.

How are you?

"How're you doing?" "You okay?

These are understandably the most common questions that I'm presented with. I'm not insensitive or callous enough to misunderstand the urge to ask these sort of questions but I do find it quite difficult to give anything but platitudinous, apparently dismissive answers.

This entry will serve as an update and to try and explain why I may appear withdrawn at times and why I'm sometimes reluctant to be social.

The physical effects of the primary tumour are that I feel as though I have a couple of pounds of lead sat in my pelvis. This sensation of mass is permanent (it is an exaggeration but that is the sensation), it makes sitting, walking, driving and standing a little uncomfortable. The only real relief from it is gained laying down.

Apart from the discomfort, the main effect is on my bladder, I'm back to square one. Actually it's worse than it was when I first presented with the symptoms. Now it ranges from uncomfortable to painful when passing water, occasionally very painful (usually every trip to the toilet in the night is in this category). The urge to pee can be immediate, little or no warning and with reduced ability to hold back. In the night it's what wakes me almost hourly now and because it's at the point where the urge finally penetrates my sleep, by the time I'm awake the need to pee is so great that it can be very painful indeed. The delay makes things worse both in terms of the discomfort and the duration (it's like wringing a damp cloth in terms of flow).

Quite regularly I feel a spasm that begins somewhere at the pit of my stomach, a bolt of sharp, stabbing discomfort that travels either along my urethra or to the perineum. It can make me twitch or jerk spasmodically and because it comes without warning it's difficult to suppress.

The secondary cancer in my hip and femur sometimes ache. This isn't that bad. It's a sort of dull background ache that is mostly masked by the pain control I'm using. At worst it can wake me at night (not often so far) or make it difficult to sit still.

It seems to be the case that the worst of it is first thing in the morning and then from mid-evening until I can get to sleep. I don't know why precisely. My theory is that by the morning my overnight pain control has worn off and it takes a while for the next dose to get to work. By the evening it's probably a cumulative effect of the day's activity and the weariness that builds as the day goes on.

I'm reluctant to share these periods with anyone because it's not easy to hide the effects. I'm aware that people are conscious of the condition, I'm oddly embarrassed by it but more importantly for me I dislike the obvious discomfort of others who wish to do or say something yet know there's nothing they can do. I find their frustration harder to deal with than my own discomfort.

Then there's the mental effects. To be honest these aren't too bad. I'm not given to self pity and I still don't feel hard done by. Depression isn't an issue. I suppose the knowledge that what future I have is truncated throws me back onto my stock of memories a little more often than I used to but it isn't with any sense of lost opportunities or (many) regrets.

In the New Year I have an appointment for the next hormone injection and to arrange the next blood sample for a PSA test before the February oncology appointment. I intend discussing what the next step in pain management is because I'm close to the limit (sometimes at the limit) of what is the safe dosage of my current pain killer.

I hope that this won't put anyone off from asking me to be sociable, that's not the intent. Rather, I just wanted to explain why I may at times be reluctant to spend as much time with you as I once may have done or would really prefer now.

Oh yes, happy solstice everyone. Wassail!