P.1 DAN'S 2 X "BIG C" DIARY ( Cancer & Chemo FYI ) I HAVE A STRANGE WAY OF WRITING, WHICH SOME PEOPLE CAN'T IDENTIFY WITH. SORRY ABOUT THAT - - I SUPPOSE I'M A BIT LIKE MARMITE This is a sort of "Diary" of events during my time with Prostate Cancer. I got the "brilliant" idea of putting it down in writing, and sending to all and sundry, and anybody who might be interested. My reasoning is that Cancer hasn't been brought out in the open enough, and if I can do my little effort to bring this to the attention of people who don't know about it - - I might even save a life. (For the sake of argument, if I use such terms as "normal" - it refers to my physical status, so that I don't have to highlight it every time with reference to my mental status - - - lol) (Once again, my rubbish memory has let me down. I have been thinking I had Prostate Cancer since 2002. Weelll - - maybe so, but it was diagnosed in March 2004) This is all History, so I'll try to make a brief update, to fill the story in. On the Telly one day in early 2004, I was watching something about Prostate Cancer. I had been at sea for 40 years, and had absolutely NO idea what a Prostate was - - Seamen have to be healthy - - otherwise they get put ashore, so I didn't have the remotest CLUE about it. On my next routine Pensioners Blood Test, I asked the Nurse if it included the Prostate, and she mumbled something about it not being included. Having sensed embarrassment, I told her of the TV item, and requested the relevant Blood Test. This was arranged, and the prognosis was Positive. Numerous appointments followed at the Royal Berkshire Hospital Cancer Centre, and Hormone Treatment and Radiotherapy were arranged. It was found that the Cancer had actually broken through the surface of the Prostate, and had therefore become "critical", because it's only a hop, skip and a jump to the Spine - - which generally means certain death, from what I have been able to deduce. (A LOT of people die of Prostate Cancer). SIT UP AND LISTEN MEN - - PROSTATE CANCER CANNOT BE FELT OR SENSED IN ANY WAY - - I HAVE - - TO THIS DAY - - NEVER HAD ANY "SENSATIONS" THAT I HAVE PROSTATE CANCER. GET IT CHECKED - - OR GO THROUGH WHAT I HAVE EXPERIENCED, - - OR WORSE - - GET CARRIED OUT FEET FIRST. THERE'S NO NICE WAY TO PUT IT. For those who don't know, the Prostate is a small - sort-of doughnut-shaped item with Urine and Sperm tubes running through the middle of it, from what I have understood. Until 2010. - - - The routine blood test had suddenly shot up to 30 (I think it was), and 3 months later up in the upper 60's. I'm glad I'm not of a nervous disposition, because earlier this year, the Doctor (not just "any old Doctor" - believe me) told me that the only alternative was to start a course of Chemo. As I have never had any dealings with other people who have experienced Chemo treatment, and genuinely thought it was because it was the "end of the line", I was wondering "how long I had". People such as Jade Goody and others rather strengthened this belief. Since this "Chemo thing" started, others have spoken to me - - who are still alive after treatment some years previously, so there is hope after all. With this in mind, and my bright and bubbly personality (SHURRRRRUP) - - - I am now soldiering on, with a brighter outlook. 22/5/12 "Day one" of Chemo treatment, starting at the Royal Berkshire Hospital at 09.30 I walked to the Hospital from work after Night Shift - less than 10 minutes - and after "due process", I went, with some trepidation, into the Ward - lined by patients undergoing Chemo treatment in comfortable chairs. I had previously been given a paper, explaining the treatment, side effects, contacts, and whatever else relevant to Pre-Chemo Treatment. I have to point out here, that I have never even MET anybody who has had Chemo, so from 09.30 that morning - - everything was un "unknown", and after the lengthy talk with the Clinical Nurse Specialist, I was going around with a "what happens next" constantly in my mind. COINCIDENTALLY - I had just finished Night Shift, - it was the first day of a heatwave, - I hadn't adjusted the Storage Heaters in the flat, - and I had just had Chemo treatment. Every day after that, I was anticipating Lethargy, Nausea, Suicidal Tendencies (from the Steroids) - and whatever else Chemo Treatment could throw at me. NOBODY was more surprised than me that I got up every morning, in a good mood, and pottering around like there was no tomorrow (possibly an inappropriate metaphor, under the circumstances). 29/5/12 2nd week, start of "critical period" DAY 1 Got home at 08.00, still feeling fine, but suddenly got a brilliant idea :- I rummaged around in the shed and among my junk, and came up with a sheet of plywood, some H.D. Industrial grade Castors, and set about making a Platform that I could mount the Exercise Bike on. 4 hours later, I had the job complete - - in the Lounge in front of the Pooter, and ready to "roll". 15 minutes later, I had test-run my device, which I have called "Skypicle", and taken a Skype "Profile" picture of myself on the phenomenon, - - and sent an SMS to daughter Karin - - on Skype. How about that ? I had solved a couple of problems, told my daughter, - was drenched in sweat from the physical effort, - - - but still feeling absolutely fine. (Slightly worried in case I might have overdone the physical effort on my first day in the critical period). That was by about 12.15. As alcohol had not been banned, and lots of liquids recommended, I had murdered 3 cans of Fosters by that time - - - while working, may I add - - (no break times during my own working hours). For the rest of the day, with no sleep after the Night Watch, and the physical effort, - - I was pretty well knocked out, and spent a lot of the time nodding off while trying to watch telly. I took my Temperature, just in case, but it was below average, rather than above. DAY 2 On the topic of Procrastination, I have some daunting tidying tasks ahead of me, and just hoping that some strength and willpower will allow me to achieve - - at least some of them. 2/6/12 into the middle of the MOST critical period - - day 12 (between 10 & 14 days) Five days have shot past, with absolutely NO physical effects being felt at all. I have been generally more cheerful than I have been for a long time, and no noticeable drop in energy. I have been pottering about, trying not to exert too much effort, but at the same time, keeping up some kind of motion in order to avoid falling into the lethargy trap. Obviously, a lot of this is due to the supplemental Steroids that they supplied (I'm thinking of applying for a permanent Prescription Renewal for them - - lol) < If anybody took that last comment seriously - - they just don't know me >. However, I have been trying to keep myself germ-free as much as possible, by spraying Dettol Aerosol Disinfectant around the flat, on doorhandles, or things that I touch frequently - (and for those of you with a dirty mind - I'm Sterile from Hormone treatment, so it only has one purpose - - peeing) - washing hands frequently, - using Hand Gel frequently - - - and using it as a good excuse not to do any dusting, in case I disturb some dormant germs. << While writing this, I had to dash off to the loo - - - but got there about a teaspoonful too late - - - (one of the "side effects")>> Dan's 2 x Big C Diary - PART 2 I got these response the same day I "Posted" the above "Diary" 1) awh good luck to u dan,i only wish my brother ,could have had chemo.it was too late after,hede been to a well man clinic at his drs surgary,and sent for tests it was found hede got prostate problems,he had the tests and it came back,sadly saying things were bad to say the least,that was in the may, he was given just six months,he passed away in the nov,so i hope you carry on as you are dan,with wishful thinking and clear mind.ill pray for you often.and look forward to your next part of your diary,,keep up the good work, m. xx 2) ps through my previous life, i know a lot of people who have had chemo and are fine now, but they all complained about how awful the chemo was, so i loved to hear your story. 3) I hope you don't mind me contacting you after K. forwarded your diary to me. 15/6/12 I have now completed 14 days from the Primary Treatment Day, which includes the last 4 VERY CRITICAL days when the White Corpuscles have been reduced to the danger point, and any scratch or germ could become an Emergency. It was this particular time when I had to be prepared to dial 999 and get myself to A& E for urgent Antibiotic treatment. I have to carry a small "ID" card to gain priority for this kind of event, - even in the A & E waiting room. That status was very scary, and was emphasised several times before I started the treatment, both verbaly and in writing. As it was a completely new, and unknown experience for me, I took heed, and a very good friend on the Internet backed this up (Thanks Bill). I have been very diligent with keeping hands, work surfaces, handles and whatever else clean, and even a tiny scratch, I have immediately wiped with disinfectant and applied "Spray Bandage". "Paranoid" you will be thinking. YEP, I've had so many warnings that I didn't see any point in being Macho. I would rather be healthy, than slink through A & E past people with all kinds of complaints, just because I didn't bother to take care. I'm not a coward, but "Macho" is for the birds - it gains nothing. At this point, there are many of you that don't know me personally, or even closely, so I suppose a Profile is in order. The Owner of the Hotel and the General Manager have been UNUSUALLY understanding, and have bent over backwards to help me get through this, and my colleagues have also been surprisingly supportive. I honestly didn't realise that I was appreciated. They ALL deserve a "mention" - (but not by name). {I am making a point of keeping names out of it as much as possible - - but don't ask - - I really don't know why - - it's just "me"}. BUT WAIT - The Specialist Nurses, Doctors and relevant Hospital staff at the Royal Berkshire Hospital have been EXCEPTIONALLY attentive and understanding, and I have included them in this Mailing List as "Feedback", - and possibly they can use it to give some hope to other Cancer sufferers. And still on the early afternoon of 5/6/12 I have got so far, feeling in extremely good form, which I attreibute to the Steroids, and unharmed, which I attribute to taking exteme care with cleanliness, keeping in motion to avoid Lethargy, and - - most of all - - keeping a POSITIVE outlook. I should imagine that less fortunate people with ill health due to Cancer, and generally feeling poorly, - - would not be so positive in their outlook. This in turn would lead to despondency, self pity, - - and according to the Steroid Instructions - - possible suicide tendencies. I hate to boast, (lol) but I have been bright and cheerful throughout the treatment so far. Today is the last day of the Queen's Jubilee, and in spite of being fit, I simply cannot understand how the Queen and the Duke have managed to remain upright through all those hours. I couldn't do it. Dan's 2 x Big C Diary - Part 3 20th June 2012 There's not really very much to tell now, I have continued as before, and have not suffered any of the Side Effects. The Duke of Edinborough at 91 survived time in hospital and came out with a smile and one of his retorts. Thanks to an extremely understanding and caring G.M. - time off was arranged for - - what I call - - the "critical period" - - when the White Corpuscles get destroyed, and the recovery period when they get replaced. Then came the approach to the second course of Chemo. I took my Blood Test as required, and on the day, I turned up, rather expecting a fairly quick interview with the Doctor, to decide my fitness to proceed with the Treatment, and then a fairly quick half-hour session with the actual Chemo. Well anyway, right at the beginning of all this, I was under the impression that the first 2 courses would be the worst, and would also be a deciding factor on how I would handle the rest of the treatment - - "ish". Coincidentally, just after the second treatment, like with the first, we suddenly had a mini heatwave, and I had a busy day yesterday with cycling to the bike shop to get it fixed after all the wet weather causing damage, + quite a bit of pottering around at home - - and then tackling the hedge-trimming which was badly in need of attention, before the bad weather turned up. I have to admit, as I sat out in that lovely sunshine with a can of Fosters (consume lots of liquids, they said), I was extremely glad I had succeeded in completing the task, but I was definitely feeling somewhat "washed out", and I had not enjoyed my hedge-trimming as much as I usually do. (I take pride in my military precision when it comes to getting the job done properly). That left me wondering - - was it the sudden warmer weather, or the forecast Lethargy ? Or the combination of those 2 things, and the fact that I am now 80. So, for the sake of argument, let's just say that I'm not succumbing to the Lethargy yet - - - weeeeellll maybe just a teeensy bit. SO - - life has continued uneventfully with regard to the Chemo, but the weather managed to get into the electrics of the bike, and cause problems, and then, a week ago last Tuesday, it was peeeeeeeeing down, I had a huge lorry passing me and a high kerb - - leaving me just space for my little bike - - - with NO opportunity to avoid the missing Drain Cover and sharp edges - - which burst my tyre - - "out in the middle of nowhere". I couldn't get through to the bike shop, even after several attempts, - - standing on the side of the road, with all kinds of heavy traffic rumbling and splashing past. The only alternative was to call "5 Star Cars" and request a People Carrier that could hold a big bicycle. Trying to convey this to the Cab Co. in pouring rain, with the roar of traffic - - - took about half an hour before a little guy eventually turned up with a small People Carrier. I have to hand it to him, he got stuck in, and tried everything to help me load the bike into a space that was never intended for the purpose, meanwhile getting wet and dirty. We drove off with part of the bike out the back, and me hanging on from the passenger seat, but it started slipping, - - so more juggling and rearranging, and resulted in getting me home with no further incidents. So - - during that wet spell, I had spent £ 90 to get picked up by the bike shop and electrics repaired, and then a second time for the Cab to get me home. But wait, - - then I had to buy a new Inner Tube, and cycle over to the bike shop to get the bent rim replaced. Another £ 90 because the tyres needed replacing anyway. Now you are thinking - - - "so what the hell has all this got to do with Cancer and Chemotherapy ?" Nothing and everything - - I haven't had time to think of the Chemo. And you're also thinking that £ 180 is a lot to spend on a bike. I rest my case - - - see you in the next report, Part 4. Dan's 2 x Big C Diary - Part 4 7th July 2012 It's 2 weeks since my last report, roughly, - - but time has absolutely flown by, so that it seems much longer than that. There is now no doubt in my mind that keeping fit has a huge amount of influence on how it goes with the Chemotherapy. The long list of Side Effects, and expected reactions to the Therapy, have not had any effect on me. I had my third course of Chemo on Friday 6th July (yesterday even) and cycled home from the Hospital - - having gone there from night duty at the Hotel. Interestingly, when coming to the end of each Chemo treatment, they also administer an Anti-Nausea. I was also issued some Anti-Nausea pills on "day one", but have not even opened the packet. I experienced some form of indigestion for about half an hour while cycling to work on the first week - - I think it was, but have not had the slightest stomach discomfort since then. I also take an indigestion tablet with my Steroid tablets, and - - again, - - I haven't experienced any discomfort from that either. I have also been issued with an "Emergency Card" which gives me priority on 999 calls, access to A & E -------- and is a bit frightening, to be honest, - so this is constantly at the back of the mind. IF my temperature exceeds 38'C, I have to take immediate action, but I understand one would be feeling very "poorly" by that time. When I started the course, I was checking my temperature at frequent intervals, because it was unknown territory, but up to now I haven't even exceeded 37'C (The "norm" I believe). The people in the know, are now telling me that I seem to be making all the right moves. However, I have to admit that I'm a bit of a fanatic about eating the right things - - - I am well in excess of my "5-a-day", and most of it raw fruit and veg _ _ _ tomato, cucumber, carrot, banana, pear (5-a-day) are my staples, but I also add some onion, garlic, occasional mango, cherries, Cantaloupe & a bit of lemon zest. With a daily peach Yogurt too. I don't go for potatoes, and only use salt when I occasionally eat eggs. There is absolutely NOTHING wrong with my appetite ! :-) Time has flown by this time, because the Housing Association fitted new Double Glazing, - - - so I had to clear space by each window for them to work, - - and when the work was done - - - - I had to try to find the things that I had stowed away in every available nook and cranny. I had also had to dismantle all the curtains and blinds, - - and blackout blinds (for sleeping in daylight), and I am still in the process of putting them back up again. Only about 4 more months to go, but it seems to be passing quickly, because I'm constantly thinking about when the next treatment will be, and when the "critical stage" will be - - - and before I know it - - I am already on the next course. (I just had a horrible thought, - - - by the time I finish the course of treatment, it will almost be my 81st - - - - I'm getting old at top speed.) BUMMER :-( That's it for part 4 DAN'S 2 X "BIG C" DIARY - PART 5 19/7/12 And now, - getting to the end of the second week of the third Course, which is the end of the "critical period" for this time. I had a bit of a scare this time. An Ingrown Toenail that has had minor infection for quite a long time, decided to give me trouble during the first week. As there were only 4 days till the "critical period", I decided to go to A & E in the morning. (as advised in case of any sign of infection). I walked to the A & E from the Hotel, and arrived at 07.15 in the early morning. Seeing that the Waiting Room was virtually empty, I thought it would be "a piece of cake". There was one guy stretched out asleep on a set of seats, with a woman nearby, who turned out to be his partner, and another old bloke - - - - THREE people in the Waiting Room. At that time of the morning - - at The Royal Berkshire Hospital, I have found that things generally go fairly quickly, and expected to be away within the half hour. I had presented my Chemo Documents as directed, but pointed out that it wasn't strictly "urgent", as I only had an infection in my toe. I finished 2 or 3 Sudoku puzzles, found out that the sleeping bloke had been there since 05.00, was entirely alone in the Waiting Room on several occasions, but the same people came back to wait too. I was seen by a Nurse to take particulars of my complaint (standard procedure in the A & E) and waited some more. Just before 09.00 (the "sleeping bloke" was still waiting after 4 hours), I went in and was attended to by a young man in a dark blue uniform, who took a casual look at my swollen toe, and went away. Assuming that he had gone to the Doctor on duty, I put my sock & shoe on and waited a few minutes, ready to go to another Cubicle - - or something. (I found out later that he was a Charge Nurse). The Charge Nurse returned with an ordinary Plaster, and a Prescription, with instructions to go to the Hospital Pharmacy. Rather flummoxed that there would be no Doctor, to at least look and squeeze my toe a bit, and go through the motions of being interested - - I was being directed out of A & E. After about 15 or 20 minutes in the Pharmacy Waiting Room, I left the Hospital 2 hours and 15 minutes after entering - - with a Sticky Plaster and a course of Antibiotics. I wrote a letter to the Hospital Feedback. During my 2¼ hours at the Hospital, I had not seen ANY of the staff in any hurry, - as if there was any kind of urgency. The "sleeping bloke" left the Pharmacy about 5 minutes before me, so I mentioned that he had apparently been waiting 4½ hours - - during which time there was absolutely NO evidence of any emergencies in progress. While I had been inside the treatment area, I had seen numerous Staff moving about, but not ONE of them in any kind of a hurry. It beggars the question why such an enormously long wait is necessary when the waiting room is empty. This is SOOOOOOOOO unlike the rest of the Hospital, and would tend to give them a bad name, which belies the rest of the Hospital efficiency. (The Pathology Dept. can clear 10 or 15 Blood Tests in under a half hour - even during the busier times). If I had an inkling that it would take so long, - I would have gone out of my way and gone to the "Walk-In Centre" in town, but had chosen not to do so in case any kind of "procedure" might be necessary on my toe. Well anyway, I am now nearing the end of the course of Antibiotics. BUT - - - - this morning, my middle toe on the other foot was hurting a bit. I set about trimming the nails, and particularly around the newly infected one. BUT - - with my belly getting in the way, I couldn't see exactly what I was doing, and found that I had snipped a couple of chunks out of 2 other toes. The one was bleeding badly, - - - so - - about 2 hours later, with blood on the carpet, and swabs in the bin, I managed to dress FOUR toes, - 2 infected, and 2 injured. WHAT A CLUTZ ? Hopefully the new White Corpuscles will take over when the Antibiotics are finished tomorrow morning. Fingers crossed. Bottom line - - I am now past the third "critical period", and apart from the self-inflicted injuries to my toes, I have sailed through the "critical period" again without any noticeable effects. FOR THE MEN OUT THERE :- If you don't get a Blood Test - - you might become a Statistic. Personally - - I didn't really NEED this Chemotherapy That's it for this time Dan's 2 x Big C Diary part 5a (EXTRA) Some recent comments 2) HELLO DAN. TY FOR YOUR REPORTS. IT SEEMS AS IF YOU ARE DOING VERY WELL. 3) aww dan , glad your keeping your chin up hun, i think your very brave, my mum went thro chemo last year. liking your diaries, bloody a&e is a joke!!! 4) yes keep thinking positive love.. your being brave discussing this , hopefully it will give other hope,ive known this with family.so know what you've been through, take care m x 5) have read your diary and found it very insteresting.. To be honest, I'm not feeling particularly brave , because I haven't suffered any pain from the Prostate (only from the treatment). It was because I was completely ignorant about Prostate Cancer, and it was only a sheer stroke of luck that I watched a program on Telly, which virtually saved my life. If I had known about it earlier, and all the information that goes with it, I probably would have had it surgically removed - - and done with it. The SOLE intention of my Diary is to inform anybody and everybody "out there" to go and get a check-up, because Cancer is a silent killer. I don't know ANYTHING about other Cancers, but I'm guessing they are just as stealthy - - - TILL IT IS TOO LATE ! What I haven't mentioned earlier, is that the Hormone Treatment that goes with it, neutralises the Male Hormones. It is a bit embarrassing telling this part of it, but after 8 years - - I am now TOTALLY STERILE. I have survived 2 wives, so there's no great loss for me at my age, but I would suggest that any Male Readers, or Wives/Partners that care, - - - - should take this piece of information seriously. My "tackle" has had absolutely NO purpose for several years now - - other than to go to the Loo. OK - - - - so NOW I'm being brave - - telling family, friends, Joe Blogg, and any enemies I may have along the line, - - that I am basically a Eunuch. But nobody else tells you about these things, so now I'm sticking my neck out (I haven't got anything else to "stick out" any longer). On the other hand - - any of you readers who are aware of Cancer treatment, may have guessed this bit of information. There will probably be others who find this "jaw-dropping". And other Cancer sufferers will be cursing me, for having "let the cat out of the bag". Bottom line - - - get a check-up. NOBODY "needs" this. Dan's 2 x Big C Diary part 6 I am now in the middle of the "Critical Period" of the 4th course of Chemo. I had been labouring under the impression that I was going to get 9 courses, but on my last visit to the Cancer Centre (I was lucky to get the "top man" in that Department this time), he told me that I was only getting 6 courses. (end of story - - as they say). Therefore I will be finished September, rather than November. At this moment in time I don't know my latest PSA results, so I have absolutely NO idea whether the Chemo is having the desired effect, because the last reading was only a slight drop. Time is absolutely flying by because I am constantly thinking about the next appointment, the next treatment, the next "Critical Period", and what I should be doing, - - and what I shouldn't be doing. Once again, my continued cycling and working is surprising everybody, and is against all expectations. I have been told by several people in the Cancer Centre, a couple of friends on the Internet, and my cousin, that I would be feeling the effects of the treatment, and feeling weaker and more lethargic as the treatment progressed. As they speak from experience, I am not doubting their word, - but I'm feeling incredibly lucky that I am the exception to the rule. My apologies to my readers if this "Diary" seems a bit disjointed and hopping about like a randy rabbit, but my notoriously bad memory recalls things at the oddest times, and then I have to write them down before I forget them again. There is one very important thing I have forgotten to mention, because I have got so used to living with it, that I don't consciously think of it - unless reminded. SLEEP To recap (listen up lads) Prostate Cancer involves both Sex deprivation and sleep deprivation - - both of which can be extremely disruptive to the smooth workings of a relationship. I can only speak from my own experience, but if I had my time again, I would have tried my utmost to have the Prostate removed surgically, but as I was completlely ignorant about Prostate Cancer due to having been at sea for 40 years and out of touch, and the fact that I was already 72 years old at the time, I didn't argue the point when they put me on Radiotherapy and Hormone Treatment. If I had known what I know now, I was sufficiently fit to cope with Surgery, but as I was only a number on the Hospital Records - - aged 72 - - they probably thought it wasn't worth wasting time and hospital beds - - and gave me the Radiotherapy. (please don't take my word for it, but that is the conclusion I have come to after talking to other Prostate patients.) Ironically, they predicted that I probably wouldn't be able to continue cycling after the first week of Radiotherapy, when in actual fact, I completed the complete course of 6 weeks (equipment breakdowns occurred) of cycling to the hospital for treatment, and cycling to work for my night shifts during the entire treatment. The womenfolk are always rattling on about blokes not listening, not reading instructions, not paying attention, and generally giving us a bit of a bad reputation. I am surviving beyond all expectations, because I have been doing ALL of the above. Cancer is a scary thing - - - - Chemotherapy is even MORE scary - - when you have the constant thought at the back of your mind - - will I walk out of this - - or be carried feet first. On that thought - - I don't know what my most recent PSA reading is, and the Head Doctor in the Cancer Centre has said that my treatment stops on 6 courses - - - full stop. He changed the subject when I asked if i would be carried out feet first. DAN'S 2 X "BIG C" DIARY - PART 7 The good news is, that my PSA has dropped from 63 to 16. Again, - - I have been told that I will be feeling more effects as the treatment progresses. Until about 10 days ago-ish, I thought I was the exception to the rule, because, physically I have been feeling absolutely hale and hearty - - in a good mood most of the time, and no apparent debilitating symptoms. In fact, apart from some very minor Side Effects, which have been under control, like runny nose (I have a runny nose anyway, since before the Chemo), and have been prescribed Ceterizine to combat that. A very healthy diet of raw fruit and veg has kept the Stomach under control. BUT - - - something which I thought was entirely unrelated, was very sore Thumbnails, which I attributed to using them on my new BlackBerry Mobile Phone - - with a tiny little Keyboard (roughly 2 weeks ago). I started using other means to "hit" the Keys, such as pencil-ends, or other suitably sized implements. However, the Thumbnails weren't getting any better, which I attributed to age taking longer to heal. UNTIL some days ago, while I was trimming my Toenails, and digging the Clippers under the nail and taking a good grip - - the discoloured Toenail pulled right off. At this point, I should point out that I have had some pus under several toenails, which I attributed to them being Ingrown, and very hard to trim with my age and large Belly. (This didn't strike me as particularly unusual, until I noticed that the Nails had gone a sort of grey-ish colour). VERY VERY slowly, and unnoticeably, the Toenails had each been changing colour, and now I am having to "dress" some of them that are discharging from under the Nail. Before Treatment started, I received a Macmillan Cancer Support Information Sheet. It told of some possible Side Effects. These Side Effects will affect some, and not others, and I understand this is a very unknown topic, so that answers basically depend on whether they show up - - or not. What I have been trying to do is to highlight the disadvantages of both Cancer and Chemotherapy - - - and the wisdom of going for regular Blood Tests in order to catch any Cancer at the earliest possible time. I have "laid it on the line", with the unpleasant bits that are involved, and some very personal details to show that I'm not "making it up". I'm sorry if it got boring, but I don't want to leave any doubt in anybody's mind, that Ta-ra for this time. (16 pages so far) Watch this space, as they say. Take care, Cheers, Dan
Unfortunately, I KNOW there are some people out there in "Internet Land, who like to impart misery and misinformation - - and will say that I'm fishing for sympathy. All I can say is - - read it, and judge for yourself. Personally, I really don't give a Flying Fig about those small minded people. (If I DID - I wouldn't have written this !)
Frankly, I still haven't got an inkling what it is actually THERE for. I don't dwell on things that might prey on my mind. Part of the testing and diagnosing, requires the Doctor to stick his finger where the sun don't shine - - so we won't go there, - - but it is also the access for the Biopsy, - which takes a few very uncomfortable snatches of samples from the Prostate for diagnosis, - - rather like pistol shots, - - and waiting for the next one will strike fear into the bravest. (Like waiting for the other shoe to drop, but including pain)As P.2 I said, Radiotherapy and Hormone Treatment was arranged, - - a month of daily Radiotherapy (working days only) and ongoing Hormone tablets. I asked if I would be able to cycle during the Radiotherapy, and the Doctor guessed I might not feel like it after about a week. - - - Well - - 6 weeks later, due to occasional breakdowns of the equipment, I was still cycling the 16 mile return trip to the Hospital. And that was BEFORE I got myself an electric booster motor on my bike. At 72, I was pretty damned fit from doing Maintenance work at a Hotel I had been working at. This fitness was also achieved from not having renewed my Driving Licence - - with no Public Transport available in that area.
Memory fails me as to when the treatment took effect enough to get me a very good reading on the PSA Blood Test (Prostate Specific Analysis) - - somewhere around the "normal" region of 5 to 7, but it must have been about 2005. From then on, I was "in remission" with excellent PSA readings.
I was recently informed that the "Norm" is 5 to 7, but PSA readings can go up in the 1000's, (Please don't quote me on this, because I am not in a position to quote facts).
Anyway, my readings were still very high, AND CLIMBING, so I was put on Hormones again, and then backed up with a second Hormone when I wasn't reacting. These readings are taken 3-monthly in order to get a reasonable picture, so it took a while before it was deduced that the double Hormone treatment wasn't bringing the readings down.
WHAT I WAS UNAWARE OF WAS THAT SURGERY WAS AN ALTERNATIVE, BUT IT HAD BEEN DEDUCED THAT MY AGE DIDN'T WARRANT IT, WHEN IN ACTUAL FACT I WAS SUFFICIENTLY FIT TO COPE WITH IT. AFTER RADIOTHERAPY, THE CONSULTANT SURGEON WASN'T PREPARED TO EVEN CONTEMPLATE IT ! (burn scars on all the vital organs in that area). You might try to imagine my feelings of regret at my ignorance of the possibilites. MEN - - YOU MIGHT HAVE THOSE POSSIBILITIES !
I was then given a VERY lengthy explanation of just about every aspect of procedures, and everything even remotely related to it, with EMPHASIS on the dangers of infection during the "critical" periods of the treatment. During this time my daughter turned up, as arranged, to get into the picture too. I won't say that time flew by, but it didn't drag either, because the Clinical Nurse Specialist was very thorough, and knew her job very well. Eventually they wheeled the necessary device over to me and inserted a needle into the back of my hand, and "fed" a blue liquid into me for about 20 minutes. I was then given Steroid tablets and anti-nausea tablets, and a sort of "Diary" Record Book to cover the duration of my treatment.
I think my daughter and I left the Hospital around 11.00, and had a very pleasant lunch at The Old Bell - on the "Patio" out in the beautiful sunshine.
I was pretty well knocked out for 2 days - - sleeping in the Lounger most of the time, and too tired to drag myself to bed, a lot of the time. When I eventually got those things equalised, I found out that I wasn't suffering side effects from the Chemo after all.
I was out watering the Pot Plants (quite a few) catching up on Laundry and Dishwashing, trying to get some of my "stuff" in order, and generally making use of every day - - - still wondering when it would "hit me".
I felt completely normal during the night shift, - in fact in good shape, which I attribute to the Steroids.
I have the Exercise Bike, which I was going to use to watch telly, while cycling, - but then it hit me that I could put it to better use by rigging it up so that I could pedal while Skyping friends and relatives.
(Sadly - at this moment in time - that amounts to 2 people)
I don't remember the contents of any of the TV programs, and as I was on the Recliner - - I wasn't getting "proper" sleep. The longer I left it - - the less I achieved. Even my determination to have a much-needed shower after a snack - went by the board, and I just crashed at 00.15, with the reassuring thought that I would be changing the bedsheets in the morning anyway.
Still feeling absolutely fine. Trying to adjust my mindset to disinfect anything and everything I had touched, or would be likely to touch. YOU HAVE NO IDEA how difficult it is to think of EVERY single thing that one touches in the course of a normal day - - door handles, cup handles, light switches (spray disinfectant is not encouraged on electrical fittings), tooth brush, tap handles, Remotes, Phone & Mobile, money - - the list goes on. Being the master of Procrastination - I have an immense list of things to disinfect - - - - which are outstanding at this moment in time..
Have just read it through and wanted to say thank you for writing it all down. I will attempt to get N. (my very stubborn husband) to read it too. because , as you say, most blokes just go through life thinking "it won't happen to me" or "it'll go away". Usually manifested in the form of STOP NAGGING.
Anyway, keep up the diary and your positive outlook. Maybe we'll meet you one day.
Let's just say that I take very good care of myself.
I'm an 80 year old Male. I have continued in employment, because I was abroad for so long without paying UK Tax, that I now only get a quarter of the National Pension. While abroad, my Driving Licence also expired, and as a Pensioner with a notoriously bad memory - I was fairly sure I couldn't pass the Highway Code. I bought a second hand bike for about £ 32.oo, and got used to cycling in rural areas with few buses, and where Taxi's were not an option for daily use. I have worked in Hotels since January 1996, and having lived an extremely flexible lifestyle since I was only 4 (FOUR), I had a variety of jobs, such as Kitchen Porter, Maintenance Man, Night Receptionist, and lately Night Porter (another step down). All of which were a comedown from having been a Marine Chief Engineer Officer with 40 years at sea. At this point in time I am still employed as a Night Porter with a 16 Mile return trip every night with my El power-assisted bicycle. It is well known that I am very fit for my age - - because of this "history". And, more importantly, it has stood me in very good stead to deal with this new Chemotherapy.
I still HAVEN'T GOT A CLUE about Cancers, or how it affects others mentally or physically, but in my case, I cannot emphasise enough that - - if it wasn't for the Blood Test - - I would not have known I have Prostate Cancer - - it's a stealthy killer, WITH NO PHYSICAL SYMPTOMS ! (until it's too late)
That rather puts me to shame.
During that time, I was a lot more careful about scratches, or anything that could get infected, but kept up activity, and "normal" life as much as possible.
So - - during the "first course" of Chemo, I sailed through, rather wondering what all the fuss was about, - BUT - - keeping in mind that there's no smoke without fire, and that I could easily catch something if I wasn't careful.
That was not to be - - - 3½ hours later I eventually got out with daughter Karin (who had turned up for moral support, and the possibility of a snack at the Pub before running me home), - - so there was no Pub visit, as I needed to have a nap before going to work that night.
During treatment this time, I was told that I would probably feel a gradual decline in energy over the course of treatment, and the intimation that I would not be able to handle it so well as time went on, - - backed up by the reassurance that SOME people sail through without any problems. I made a mental note to put myself in the second category.
Kudos to that guy - - he had really done his best, and got me home, in spite of being "rather wet". Under THOSE circumstances, I arranged a "sizeable" tip (don't even ask !), but let's just say it was the same as the Cab Fare.
Some would call that 100 % I suppose (PMSL).
Good - - - innit ?
Nah - - a car or Public Transport would have cost me many times more, and I've got virtually "puncture proof" tyres to see me through for some time to come. Compared to frequent punctures previously - - in the middle of the night, and out on country lanes with no people or lighting - - it's money well spent.
As I can't cook, I have to make use of frozen "Ready Meals", which invariably contain a very high average of potatoes (to make up the bulk), so it's yet another one of the "5-a-day", making it more than 10-a-day, but I often scrape a lot of the mashed potato off the top - - - and bin it.
A well-kept secret is that I also take Supplements - Vit. B & C, Zinc & Cod Liver Oil capsules.
It seems to be having the desired effect.
Therefore there has been no shortage of activity in my off times.
So much for the hazards of infections during Chemo !
B I G M I S T A K E
With care and the Medication, the toe has settled down quite well and is regaining a normal colour and shape. And I am also on the last day of the "critical period", which has passed as uneventfully as before, in spite of the toe infection. (I had been standing by in case it went wrong).
I found it had the same problem as the big toe - - infection under the nail.
This is the daft bit - - - because of my belly, which I just can't get rid of, - - I hadn't been looking after my toenails, because I get completely breathless due to the Diaphragm pressing up against my Lungs. All my toenails needed trimming.
Don't forget that I am going through all this because I didn't know about getting Blood Tests regularly to diagnose Prostate Cancer.
I cannot emphasise enough, that I have never felt ANY symptoms WHATSOEVER.
~~~~~ YOU CANNOT FEEL THAT YOU HAVE PROSTATE CANCER ! ~~~~~
And another significant thing - - I am in exceedingly good health.
The "average" person on Chemotherapy has a VERY much worse time than I'm having. The list of "Side Effects" is very long - - - and SCARY !
After some Feedback about my Diary (see below) I thought I might as well jump in at the deep end.
1) nice to know your doing so well dan,, keep up the good work,your an insperation,to others who may be in the same position.keep up the good work. m x
GOOD FOR YOU EATING SENSIBLY. I THINK ASDA DO SOME READY MEALS WITHOUT
POTATOES.KEEP UP THE GOOD WORK DAN. MY PRAYERS ARE WITH YOU AS IM SURE MANY MORE ARE. TAKE CARE . LOVE FROM B XXXXXX
Although your age is catching up but you are looking great.. If I do not email to you doesn't mean I totally forget about you.. I miss you a lot "papa".. Wish you are here. Think positive to stay healthy and strong.
(From a niece-in-law in Singapore)
When I see a pretty girl/woman now - - - - that's all that I see - - - a pretty girl/woman.
A one-day-old-bunny-rabbit is more threatening than I am.
The only consolation - - if I ever get falsely accused of rape - - - somebody is going to look awfully stupid.
As I have previously mentioned, the Radiotherapy in 2004 had zapped all the organs in the lower regions, - - Bladder, Bowel and all that other nasty stuff.
As a result - the "waterworks" - as they so delicately call it - has got scar tissue, which apparently distorts the normal workings of the Bladder.
I have NOT had a whole nights sleep since 2004 !
Roughly every 2 hours during the "night", I have to toddle out to the loo to relieve my Bladder. ("night" being during the day as I work night shift).
Under normal circumstances, the "2 hour window" is almost precise, and can be within a few minutes. At other times, it is down to 1 hour, - - while at other times, I consider myself lucky if I achieve sleep for 3 hours. I have even managed 4 hours on very rare occasions, but to my great surprise, I managed 5 hours for the FIRST time since 2004 just a few nights ago, which I can only assume has something to do with the strange workings of the Chemo treatment.
GO AND GET A P.S.A. BLOOD TEST ! ! !
("Treatment" was supposed to be the 5 working days for 4 weeks).
I'll stop here - - see you in the next episode (I have to complete the course)
This is a long one !
Now THAT is good news, but beggars the question - - will it drop to the "norm" of 5 by the time I undergo my 6th and final treatment, - - - or what ?
I think we can safely conclude that I will not yet be carried out feet first, because the Chemo is definitely having a VERY positive effect on the Cancer.
And equally - - VERY VERY slowly, some of my Fingernails have been getting tender, and some are now also changing colour, and although my Thumbnails are not as painful as they were, I am having great trouble opening Penknives, Yogurt Covers, or sealed items that require even slight pressure on the Fingers/Thumbs. (Believe me, being Wimpish, just isn't my "thing").
And you are wondering what the hell this has to do with anything, which is precisely my thinking too - - - until it eventually dawned on me - - - Nails and Hair are made of the same thing. Hair loss is part of Chemotherapy.
Admittedly I'm not on the strongest form of treatment, but "some" hair loss is to be expected. Unfortunately, I haven't seen any mention of Nail loss, so I feel I can be forgiven for taking so long to put 2 and 2 together. Now I'm wondering whether the Roots of the Nails will continue to die, or whether they will recover once my last treatment has run its time in about 5 or 6 weeks - - if I haven't already lost the Roots by then. (My Toenails aren't looking very reassuring).
I hope I'm not breaking any rules by listing them briefly, but my intentions are for the good :-
1) Lowered resistance to Infection
Due to White Blood Cells being reduced and recovered in 3-week cycles.
This is, apparently, the most dangerous part of the treatment, and involves feeling unwell, and running high temperatures.
I've been getting infections, and on my second course of Antibotics "as we speak", but - - "touch wood" my temperature has remained well within the safety level.
2) Bruising or bleeding
Similarly - reduction of Platelets which help to clot the blood.
For some bizarre reason, I have had a lot of this on my Forearms, and a bit on the backs of my Hands - - but not noticeably elsewhere.
I have also just found out that the surface of the Skin is made up of Keratin of the same stuff as Nails and Hair, and healing is proving to be a bit of a problem on minor scratches etc.
3) Anaemia
Reduction of red Blood cells
Fortunately, this one doesn't seem to have had any noticeable effect on me, except - possibly - breathlessness - - which is also attributable to my big Belly.
4) Discoloured Urine
Temporary green/blue up to 24 hours after treatment (The Medication Mitoxantrone is a dark blue colour injected in the back of my hand).
Have only noticed it once.
5) Feeling sick/vomiting
Also lasting about 24 hours after treatment.
On conclusion of the treatment, they inject an anti-nausea chemical, and I haven't had even the slightest symptoms. I was also given a bottle of some Anti-Nausea to take home with me, which I have never needed to take out of the box.
6) Tiredness and feeling weak
Allow plenty of rest.
This has been a bit of a puzzle to me, because, apart from job-related tiredness, I haven't noticed anything unusual - - in fact, I have been attrributing this lack of tiredness to the Steroids, which they issue to me after each treatment - for 21 days - the length of time till the next course.
I have been taking things VERY gently, but have been pottering about in the garden, and carrying out normal things indoors.
At this point I must add that the Chemo has made me VERY VERY sensitive to Heatwaves, which we've had several of during my treatment. Any exertion over 23'C tends to hit me HARD and find myself moving slower & slower, and head for a chair as soon as it is available - - preferably with a Fan or open Window nearby. Therefore I'm contradicting the previous Paragraph, - - but only when it's over 23'C.
7) Sore Mouth and Ulcers
Oral Hygiene is essential.
Fortunately I have only had slight problems, and some due to sharp Tooth-Fillings. I'm a regular user of Listerine.
8) Taste changes
(I have been told that the food can have a sort of "metallic" taste)
Erm - - - I have had a wicked appetite, and have been thoroughly enjoying my food - - too much - - I have even been Snacking, which is not normal for me, often wishing I had more variety in the Fridge or Cupboard.
9) Diarrhoea
'nuff said.
10) Hair loss (NOT baldness with Mitoxantrone)
Apparently rare, and resumes after conclusion of treatment.
This is the one that seems to have affected me most, and I'm a bit peeved that Nail loss hasn't been mentioned.
11) Liver temporarily affected
Returns to normal at end of treatment.
Apparently unlikely to cause any harm, but, forgive my ignorance, I can't remember from my school-days - what it is the Liver does anyway.
12) Damage to the heart
Not likely to cause problems on "normal" treatment, and is monitored throughout the treatment.
13) Whites of the eyes
VERY rare light blue tint, and vanishes after treatment.
14) Pain and discolouration at injection site.
So far no pain, but slight bluish tint under the skin.
15) Risk of Blood Clots (Thrombosis)
Cancer can increase Blood Clots, the Chemo can add to the risk.
Personally I am on both Aspirin and Simvastatin for thinning the Blood and for Cholesterol, and - - "touch wood" - - have not had symptoms so far.
16) Other Medications
Before start of treatment, a list of ALL Medications, including "over-the-counter" has to be supplied to the Doctor.
Apparently all mine were compatible.
17) Fertility (LISTEN UP LADS)
Important to discuss fertility with the Doctor before treatment.
N/A in my case.
18) Contraception
Family planning is NOT advisable, it can affect the child, and is on-going for some time after treatment.
CATCHING IT IN TIME, MEANS YOU DON'T HAVE TO UNDERGO THE CHEMOTHERAPY - - (to the best of my knowledge).
IT CAN HAPPEN TO YOU ! ! !
And Chemo applies equally - - if not MORE SO to women.
