NHS vs Private, yet again

The fact that the second chemo cycle wouldn't have started until the the arm was healed properly and the clips (40 odd I think) are taken out means that we have had to slightly change the rest of the programme but as of now the pre chemo blood test is set for 11th April, and the 2nd chemo cycle is 13th.

The orthopaedic guy asked my GP to arrange a nurse appointment to remove the clips; 2 weeks after the op would have taken us to Thursday 5th April, a week before the chemo restarted, so I called the GP, they had the letter, and promptly told me they didn't have a single nurse appointment for at least 2 weeks from now. What a waste of time!

I called the Spencer wing. They said "What date is 2 weeks after the op?" "5th April" I said. "11 o'clock on the 5th then". Sorted . That is the difference between NHS and private. Now I would never say that the NHS shouldn't be there because as a system it is fantastic, but its unfortunate that over the years it's become such a lumbering great beast that nowadays its often difficult to serve the needs of the patients effectively due to lack of resource, top heavy bureaucracy and systems that often don't work correctly or fail on a regular basis. A good friend of ours who has worked most   of her life as a health professional told us the other day that for "major" illness such as stroke and cancer the overall care given by the NHS is hardly different to that of private medicine but for things like the pinning procedure I have just had there is a massive difference, and I am happy to have the option of the choice between one and the other. My eternal thanks again to Addison Lee for providing the BUPA cover as part of my employment and for their continued support.

An Interesting Discovery

Jen and I have always been avid researchers in respect of things we find interesting or which we need to know. When she had her stroke we learned a lot from the net about the causes, effects, symptoms and treatment pertaining to stroke and that enabled us to help her on her route back to normality over the several years since 2005.

One of the main things which has cropped up since the cancer diagnosis is this "low level" stuff: potassium and cortisol especially. Those who have worked with me over the years will attest to the amount of coffee I used to drink when at work. While I mostly drank tea at home my drink of choice at work was always coffee. Because I have been at home since the diagnosis for some reason I have virtually stopped drinking coffee, preferring tea as that's what Jen drinks during the day. I probably haven't drunk more than a dozen cups of coffee since February, which for me is unbelievable, as I would probably have drunk a dozen cups a day while at work. 

Some of the more noted effects of low cortisol is aching all over the body, low back pain, shaky hands, and various other effects that I can relate to. Another factor is sleep: sleep itself increases cortisol levels, but I am presently not sleeping well: two hours at most then wake for a while then doze again, but through the night my sleep is very interrupted.

There are some natural herbal remedies which one can take to help but while I am on the chemotherapy I am advised it's not a good idea to take too many other things which may suppress the effects of the chemo drugs (they have already told me to stop taking my daily cod liver oil, which of course helps joints, and co-enzyme Q10 which I was taking to counteract the muscle and joint ache effects of the statins prescribed for cholesterol. In fact for the moment I have chosen to not take the statins as my cholesterol is not raised to any extent anyway.

So I am going to try going back to drinking coffee during the day, to see whether there's any improvement. For those interested there's an article link below that also suggests other things which are good to help cortisol: grapefruit, and licorice neither of which I like! So for now lets see if returning to coffee drinking will help the aching muscles a bit.

Read the article here

Highs and Lows and God Knows What

Do you ever get that feeling the moment you meet someone that you think to yourself "I like this person"? We all make those first impression judgements often without realising we have. After the stress of the last couple of days it was important that the treatment plan and all the associated components that are part of that were rounded up and put in their respective places. Our meeting with the oncology consultant Mr Raman was that opportunity as well as my chance to be more involved at the business end as it were.

So off we went to Canterbury for the appointment at just after midday. Because of the ever present parking problems at these hospitals we had left in pretty good time but if you have ever driven into Canterbury on any weekday the traffic can be horrendous, and it was. Our appointment loomed 10 minutes away as we arrived at the hospital, and the oncology department is accessed from the main hospital entrance: most of the parking here is staff etc. but there are half a dozen disabled bays. Previously we have never been able to get one of these which means dropping Jen at the doors and finding a space in a public car park, the closest of which is about 5 minutes walk away. I drove to the main doors and wonder of wonders! there was a disabled bay free. No stress!

We parked, and unlike other parts of the hospital where we have been before it's a short walk inside to oncology. Five minutes wait and we are called in to see Raman, and I got that instant "I like you" thing (previously we saw one of his staff not him so until today we hadn't actually met him) going on.

We reviewed the operation, agreed that the next chemo cycle would commence 16th April, giving time to remove the staples from the arm (should be done next week at GP's) and because I have low cortisol that's been flagged up in (yet!) another blood test result we are going to arrange what is known as a Synachten test [click to read more] to establish what may be going on.  

All these lows and highs and god knows what's may well be caused by the fact that the original cancer has gone secondary into this neuro endocrine thing. Now, endocrine in medical terminology relates to hormones and stuff, and it's possible that the cancer is either producing it's own hormones or affecting production of mine. So until the chemo gets working over the next few cycles we wont know for sure but hopefully as the cancer gets beaten up by the chemo this might settle itself a bit. On that score time will tell.

So mr Raman has left me to arrange the synachten test which I will do and to ensure the staples get taken out of the arm so its nice to feel more involved. He did assure me that he was keeping an eye and in touch with the consultant for the arm operation, but having met him I feel much more relaxed and confident that there is a person in charge now who I am very comfortable with.

I have been getting very sore joints of late too, and Raman confirmed that was either the chemo or the low cortisol (could be one or both) but it's good to know there is a cause that we can identify and it's not something new that we don't know anything about.

Continuing the non-stressed thread of the hospital visit right opposite the door to the oncology department is the hospital restaurant for staff and patients and we stepped in there and had a very good lunch at a very reasonable price which rounded off the visit very well.

A New Look

Took a trip to see my mate Steve the barber this morning. Since last weekend, as you know, my hair has been coming out. Now I have always been a bit vain about my hair: it always had to be "just right" and since it went silver I have been especially proud of it. However, there was no way I was walking round with lumps of it falling out so off I trotted to Steve, who said that the best option was grade 1 all over, and that will fix it for the duration of the chemo.

For posterity then, here's the "new" me

Gotta keep smiling!

Spanner in the Works

Seems like everything is conspiring to put obstacles in the way. Furthermore it also seems that the person who should know that there is a spanner, that person being me, doesn't get told. So having got myself prepared for the second chemo cycle tomorrow the fact that I had had an operation last week leaving me with staples and stuff in my arm that won't get removed until next week sometime means no chemo because of the risk of infection while the operation wounds heal.

This of course is an eminently sensible course of action except that nobody actually thought to point it out to me, and as they say on the Simpsons: DOH

Just means that I now have to wait probably till 16th April for my next chemo dose. What really annoys me is the fact that everyone knows this is a sensible option, and everyone agrees that what should happen, but nobody thought to tell the most important person (in my opinion at least!) in all this which is me. Now when I heard this to say I was a little pissed is an understatement and this has now made me decide that as of now, anything to do with this treatment absolutely MUST come through both me and the oncology consultant. The management of the treatment should, in my view involve the patient, should it not? As of now if they don't consult with ME they will be in big trouble.

I have always been someone who likes to be in control and I think the last week , with the op on the arm and stuff I had kind of lost the control of the cancer stuff but this will put me back in control, which is a far better situation. We have a meeting with the oncology consultant on Thursday so we will set this all out then and ensure that everyone involved knows what is required.

Make over time

Today, literally, my hair started falling out. I have always been very proud of my hair and much as I do NOT want to lose it, I must accept this is going to happen and I don't want to walk around with lumps out my plan is that I go see my mate Steve the barber next week, get the hair cut down to a number 1 so at least I have control of it.

Will add a picture once done. Lets hope I don't look too much of a thug!

Day 3

When I awoke on Friday after a few hours it was still early and as I gathered my wits the immediate reaction is to feel the arm: Mr Smith had said there would be no bolts outside the skin: as my had hit the top of my right arm i could feel this inanimate lump "shit, there's a bloody great bold there" I thought. The arm was bandaged so i couldn't see anything, and at that moment the day staff nurse Sue came in. "There's a bloody bolt there" I said. "No there isn't, that's your arm but you can't feel it because of the nerve block!"

I suddenly remembered the last words the anaesthetist had said: he was going to give me a nerve block injection to numb the whole arm to stop the pain, and that's what it was, my arm but totally numb. The blocks last anything up to 12 or so hours.

Visits then ensued from the orthopaedic consultant who gave the all clear to go home, the anaesthetist did the same and the only concern is keeping the potassium up. Mr Smith has called in a physician and he is on the case: we see him Monday and he will sort that we hope, through changing my diuretics etc.

We will also start second cycle of chemo next week and have a review with the oncology team. One down, five to go!

Day 2

Thursday dawned bright and sunny and still with the plan to operate that evening, always subject of course to the potassium levels getting to where they should be. Midday was "nil by mouth" cut off but that meant I had what could only be described as a fantastic breakfast which was probably better than many hotels would serve|: cereals, full cooked, tea, toast marmalade. Brilliant!

Jen arrived about 10.30 and we sat enjoying each others company as we always do, just chatting, to the background whirring of the potassium pump! Still the levels weren't high enough and the medical staff were undecided. However there was no point in changing the timetable so the afternoon rolled along. Welcome visits too from friends and relatives, which helped a few hours go by, but as the deadline grew closer we still waited for a definite "yes", and 4pm, 5 pm came and went and even then the anaesthetist was not sure: the nursing staff were still saying they didn't know, they hadn't had the call to take me down to theatre, and still that pump kept whirring away. Finally, and bearing in mind that the planned time for the op was 6.30pm, we got the call at 6.10! Sue, the staff nurse who was brilliant all day  got me ready, and escorted me down to theatre. She was as relieved as I was I think as their efforts all day had been to get me there as much as I wanted to be there. She duly handed me over to the theatre staff and wished me luck. Again I cant say enough about how professional everyone was, and i reckon that at exactly 6.30 the anaesthetist said " in a moment you'll start to feel sleepy, and will wake up after the operation" and "pow" I was gone.

The consultant had originally said that the pinning would take about an hour, and Jen had left as i was taken to theatre. Turns out that the procedure was quote "a little more fiddly than we originally thought" which stretched the hour to over four! Jen of course is on the phone to the ward after one hour, and then no doubt many times after that as one became two became three and so on! Panic inevitably sets in and I guess credit here goes to Caroline, the night staff nurse who was taking those calls from her. Finally she called her back when i came up from recovery at some time after eleven.

My first recollection was at about midnight, but all things considered I felt ok, and was pretty alert, busting for a pee, and starving hungry. Caroline helped me out of bed, walked me the few steps to the toilet, and back, got me sat in the chair and stuck a cup of tea and a sandwich in front of me which I ate and then dozed in the chair, called Jen on the phone and dozed again, on and off over the next few hours. Caroline's attention and care overnight was brilliant, and I finally fell into a deeper and more relaxed sleep as it started to get light.

A Three Day Blur - Day 1

With the call on Wednesday saying come in early so they could try and raise the potassium level in my blood we arrived at the Spencer wing breathless, slightly unprepared and unsure at that moment whether the op would happen the next 72 hours really did become a blur of "will it, won't it?" that literally changed by the minute as the clock ticked by.

The problem arises because low potassium makes general anaesthetic very dangerous. At the time I was admitted on Wednesday there was no chance they were going to operate unless the potassium level was raised and the plan was simply to use either soluble tablets or an IV drip depending on the result of an initial blood test at that time. The level turned out to be lower than they thought so it was the drip option: started late afternoon and going through the evening with regular monitoring of the potassium levels along the way.

The Spencer wing is a separate building annexed to the main QEQM hospital and is designed in many ways like modern hotels: with individual rooms each en-suite with tv, wi-fi, and regular facilities like any roadside motel you'd happily stop off overnight at on a business or pleasure trip. What sets this apart from the main NHS is the relaxed but efficient atmosphere created by some of the most dedicated, professional and amazing staff I have ever encountered. Everyone from the Matron, Mary, through to the other senior nursing staff who were all very experienced (often 20 plus years) to the more junior staff what set these apart was the fact that you felt their work was still a vocation from which they still derived the utmost pleasure from doing: nothing was too much trouble, everything was carried out with a care and attention to detail and always done "now" rather than "in a minute" . Add to that a smile on faces that defined the delight they all got from doing work they obviously loved doing. Nursing staff are not enough though; and a ward relies on many ancillary and support workers: cleaners, caterers, porters, secretarial etc and without exception the same mindset was there in everyone. Every one was an absolute credit to the establishment. This is how it should be.

So Wednesday evening went by, with the potassium pump whirring away, and the IV bag due to be replaced at 2am (which it was, on the dot: another sign of the staff efficiency). Jen sat with me and we ordered dinner for her too, served with mine (chicken soup, followed by jacket potato with a variety of filling, ice cream and profiteroles for dessert. Never let it be said I don't treat her to a meal out from time to time)

Hotel? or Hospital?.

So I am sat here in a private room, with Tv and ensuite, staff who cant do enough forvme and they are pumping potassium into me on an intravenous pump. Theres about half of the first bag left and that should be done about 2am. The night staff will swap it at 2cand hopefully the morning will see my potassium level at a point where they are happy for the op to go ahead. I do hope so.

Jen stayed here all afternoon and we had dinner together in the room. Nice food too. She went home about 6.30 and while i know she would rather have stayed here i hope she gets a good nights sleep and of course she will be back in the morning.

I would like to mention here the firm for whom I work : Addison Lee. They pay for my Bupa cover, and have been so supportive right from the word go. In these days of hard headed business and dog eat dog I am eternally grateful to everyone at Addy Lee for their support and good wishes
For now I can only hope that the intravenous pump overnight does the trick, and that everybody agrees the op can go ahead as planned tomorrow evening.

More from me in the morning                                                                                            

Gimme Some Tummy

Yesterday we had a call from the hospital after my blood tests to say they had decided that my white blood cell count was too low. As a result of this the oncologists said I did need to have a short course of  G-CSF. So in we trundle to the Spencer wing at 5pm to have an injection: I am sat there holding out my left arm, like you do, and the nurse grins and says "Gimme some tummy!"

This particular injection is preferred to be given into soft tissue as it's absorbed far quicker that way and tummy is as good a place as any!

So with that done we are sat here this morning expecting to go back this evening for another injection and the phone rings:: hospital to say now they have decided my potassium levels are too low. I can't have a general anaesthetic with this low a potassium level. So now they want me in this afternoon to stay, to enable them to increase the potassium level either by tablets or IV drip so we can still have the operation tomorrow evening.

That completely screws all the plans for a nice unhurried admission at 4.30pm tomorrow and adds an extra night to the stay but rather than cancel or delay the op it's better i get in there today and they fix the potassium. I suppose I could just sit here and munch a ton of bananas which are good for potassium but its probably a bit hit and miss!

Still I have the G-CSF injection to look forward to later again and Staff Nurse Mary saying "Gimme some tummy!" again.

Silver Linings.

When Jen had her stroke over 6 years ago, we sometimes felt like the world was at an end; everything that needed doing from getting up and getting her dressed in the mornings to getting her to bed at night seemed to present an almost insurmountable and often frustrating challenge which, when faced from the perspective that we are all used to might well have led to despair and self-pity.

What we both learned from those times was that if you're prepared to sit down, examine the problem logically and apply what skills you have, often from a slightly lateral thinking  angle, you can pretty much do anything. We have always said that we wouldn't let her disability stop us doing things, and we certainly haven't. We work as a team. We don't think it's funny that even if we are out at a restaurant I will cut her food up; that if she needs help to get out of a chair I will help (the effective use of counterbalance etc that we have found to do this means she gets out of a seat as quickly as anyone) that sometimes you can't just dash out to the car to pop to the shops, but that you might need to take a few minutes more. Planning is important, but once you have practised those things a few times, and developed the team skills you both know what to do, and they become the norm.

This time we find that the person who may need the help in some situations is me, but the fact that we have done many of these things for the last 6 years has given us a head start.

There is one important other aspect too: we enjoy helping each other, we like being in each other's company and that mutual helping can be very rewarding too. I bet we can butter a slice of bread, or cook breakfast better than most right now who only have use of one hand each. Each little obstacle overcome is a triumph.

You must always look for those silver linings: we have a beautiful car as a result of her DLA benefit. Yes we would give it back right now if it meant her being as she used to be but in reality that's not happening so lets take it, and appreciate it as one of those silver linings. The most obvious one for us from my cancer is that we get to spend time in each other's company, just us. Since the day we met we haven't had that opportunity just because of work, family, kids etc. So this time together is good for us, and again while I would rather NOT have cancer, that isn't happening so we take the best from it and face ewhat problems it throws at us head on, together, always as a team.

We have found that the chemotherapy at the moment knocks me out totally by about 2pm: to the point where I have to go to bed for an hour or two, so any little jobs or errands that we have to do we do in the morning, they are done by that time (again we plan those things if we can) so I can rest and take that couple of hours to recharge.

Now here's a thing: I said in an earlier post I wanted to get the pictures of my x-rays to post here on the blog, but even though they are MY bones did you know that you have to fill in a huge form and apply to the NHS for copies! They then decide if you can have them, and supply them on a CD. That's all very well, but, yes you guessed it, you have to pay £25 for the privilege. I thought the whole idea of the NHS was it was free for the user at the point of delivery? Not so! A bit like the parking charges. I am pretty sure pregnant mums don't pay £25 for their ultrasounds of unborn babies do they? And these days everything is digital and saved onto hard drives because this last week I have seen at least 4 different people view my x-rays on computers in different locations at the hospital! Why somebody can't just send me an e-mail with the x-ray attached I have no idea!

Getting organised!

So the op to pin the humerus is now confirmed and authorised via BUPA. Mr Smith will do the operation on Thursday next week the 22nd March.. Now one of the most stressful things we have always maintained was the inability to park sensibly at any hospital these days, and QEQM is no exception. As I have already espoused several times in this blog the provision of sensible and easy to park spaces designed around the ability of patients and visitors should be something which many hospitals ought to address, but of course that won't happen because by doing that there is a loss of revenue: a report in 2010 suggested that some hospitals earned in excess of £1.5m per year simply from parking and clamping. Nice work if you can get it!

Today my MRSA test was being undertaken at the private Spencer Wing and they have their own car park, right outside the building. There is an automatic barrier, and once in you are required to obtain an exit code from the building reception to exit. Simple, stress free and efficient. We drove in, parked, walked straight into the building, did what we needed and left: no stress, no fear of being late,  and perhaps a model that could be utilised on a bigger scale by the main hospital to lessen the problems that many have to endure to park.

  

The 7th Cavalry aka BUPA

I am lucky, in that I have spent 30 years in the cab business in London, and that has enabled me to spend a lot of time learning to understand the accents of drivers whose communication skills were, at best, rubbish. Add to that the fact that that many of those drivers did not have English as their first language and I am often way ahead of many people when it comes to understanding at that level. In the NHS the  doctors that used to be called SHO's are now known as S2's. So, the S2 we dealt with on Friday at A and E was like that: both language and communication issues. He called me today, and we had what can only be described as a scary and frightening conversation, in that I had absolutely NO idea why he called me, and he was asking ME if I knew about G-CSF.  "was I taking it, etc etc" "Er no, I am the patient, I don't self prescribe..."

When asking him WHY he had called me there was no clear answer: not a surprising conclusion I guess.

Anyway, I had called BUPA this morning, and made contact with the private Spencer Wing at QEQM, and been referred to an arm specialist:: we just had a call from his secretary to invite us for a consultation at the Spencer wing at 5pm tonight.

Met the orthopaedic consultant: Mr. Smith, nice guy! and we saw the x-ray from Friday: total snap right through. So he is going to speak to the oncologists, work out the drug/medication requirements, book theatres and anaesthetists etc. with a view to pinning the bones next Monday evening. His secretary will confirm details tomorrow, and that will give us 10 days after the pinning before the next cycle of chemo.

I have to say I am much much more comfortable doing it through this guy than the NHS who have already screwed this totally and who are still procrastinating about when it will be done. Add to that the the consultant for the NHS is the guy who said it wouldn't break: don't think so matey! 

Follow the Blog

You can now follow the blog really easily just by signing up on the right of the page: add your e-mail and you get a mail each time a blog post is published! sinple as that!

Waiting Game

 I really don't believe how badly organised the NHS can be sometimes. Firstly, yesterday afternoon they were saying I would come in for this bone pinning today, then they called last night to say it would happen Monday.

Late this morning Jen takes a call saying come in Sunday; now this call was from "bed allocation" which she immediately queried because the call last night stated they don't have any theatre time this weekend. So, back goes the bed allocation lady to check and Lo and behold! no they don't have any available theatre time this weekend!

Although all this journey thus far has been undertaken via NHS I do have Bupa cover from work and I will call the private wing at QEQM on Monday to arrange the pinning operation under my Bupa cover. Have already spoken to Bupa and it shouldn't be a problem. That way we get done privately, probably quicker, and with the best care there is, allowing for the fact that the op has to be done after the commencement of my chemo, which creates some issues due to the impending loss off immune system.

This can be counteracted by the use of a drug known as G-CSF. This drug helps promote white blood cell production in cases of low immune response such as cancer patients. The oncology consultant says they should use that and it shouldn't  be too much of an issue

Information on G-CSF here

So that's the plan as of today, but of course we are subject to change at any time.

I should report that thus far I haven't had any noticeable side effects (as yet) so I am keeping fingers crossed, and certainly until I have the pinning operation: don't want to be having an operation while dealing with the chemo backlash. Worst way that can wait till afterwards as next chemo is scheduled for 28th March.

Breaking News! excuse the pun

Just had call from hospital: op will not be tomorrow they cant fit me in. So now we wait!

Disaster strikes!

All was seemingly well. Pain was no worse, and we had an arranged meeting with the Hospice Pain Management Consultant this morning. A good meeting, discussing issues concerns and making some fine tuning to the medication I was taking. Now when I had my fall the other evening, which wasn't really a fall, more just a roll where I lost my balance when I was down on my haunches in the kitchen and rolled onto my right arm there wasn't any real addition to the pain that was already there and I had managed to have a few hours actual sleep the last two nights.

What was noticeable was that the upper part of my right arm had swollen a little. The doc looked at it and suggested we get a precautionary x-ray to be on the safe side.

So, over to x-ray and total amazement when they said "It's fractured!"

Three days into chemo and a concoction of drugs about to destroy my immune system and they want to start pinning my humerus! Looks like I will have to be admitted in the morning for an operation to fix it. What a friggin' nightmare! What's really hacked us off is everyone involved telling us how careful we needed to be with the bone with one exception: the orthopaedic consultant who categorically said it wouldn't break. I am not happy right now! Jen is upset of course, and i have spent the afternoon trying to touch base with all the different teams to update them on the news of what has happened.

We await a call from the hospital in the morning!

Chemo effects, the first signs?

Woke this morning very full of aches and pains the reasons for which I know and will explain in a moment. More interesting though is perhaps the first of the signs of chemo side effects. Sore dry mouth, and ulcerated tongue.  These are listed as one of the side effects of this type of chemo. To see more information in detail about this  chemo click here.

So to the aches and pains. All my own fault! I bent down in the kitchen last night, too quickly, lost my balance and fell over straight onto my bad arm. Did I swear? Yes. However apart from a bruise and the awful pain which is going now after appropriate dosages of morphine no harm done. Just have to be a bit more careful that's all.

Even the Horse Said Neigh!

To avoid more time sat in the Hospital having drips going intio me over a period of hours, once the original chemo is added to the blood stream more can be done using tablets. So, I have 4 tabs to take today , and another 4 tomorrow which effectively complete the chemo session for this cycle. We often joke that a pill that's quite large is a "horse pill". Well in this case even horse said No! In fact what heactually said was "you must be ******* joking mate!, Am I supposed to eat them or stick them up my arse?""

I am about to take all four of these, with another 4 the same tomorrow.

Wish me luck!

Pain Pain more Pain!

After the chemo etc and a relaxing evening I couldn't getcomfortable in bed at all. After several abortive attempts to rest I must have dozed off about 3 or 3.30am, only to wake with a start at about 4.15 and the most excruciating pain in my right arm. I cannot explain how much this hurts: it makes onr feel sick, breathless, and disorientated. To add to the total mess of the situation, I have run out of my liquid morphine! It's on order from chemist and should be here later today, but thats not now!. Oramorph being liquid, acts fast and gets to the pain quickly.

Not sure what to do I called the Pain Management out of hours number: Talked to a staff nurse, appraised her of the situation: she asked me to call local GP service and explain referral from there. All done and have been advised to take some tramadol which I had in the house from couple of weeks ago. Pain Team will be in touch in the morning, to follow up. The arm is now stable, albeit painful, but better than 30 minutes ago, so looks like the tramadol worked.

A valuable lesson learned: Don't be afraid to use every available resource thats put in front of you, and if you take their advice they can help!.

First Chemotherapy Treatment

Today was a bit of a trip into the unknown: being pumped full of all kinds of weird and unnatural substances. What would the reaction be, would I feel sick, would there be some reaction I hadn't considered? Only time will tell.

Our heads had both got locked in with the appointment time, 3pm. WRONG! That was the time of the pre-assessment, and blissfully unaware that the real time was actually 11.30, until about 11.15 when for some unknown reason Jen turned over one of the many papers with appoitments for tests, scans, doctors, CTs, etc etc and there staring us in the face was 11.30: Panic!

Luckily the QEQM hospital is 10 minutes drive away. I called the Viking Day Unit, left a message that we were delayed by 15 minutes and would be there soon. Into the car, and off we go. Jen's driving so on arrival at the hospital she lets me out at the Day Centre to go park the car. As always, these appointments raise the stress levels, but what, as always, is the biggest stress inducer? Parking! Jen sat for 15 minutes where the few disabled spaces are: none available! She then decided to pay to park: found a space, and walked some 100 yards to get a ticket, remembering she walks with a stick, and to be honest that is NOT FAIR!  I hope someone from QEQM reads this!

Then, getting out the car her rucksack broke: stuff all under car: purse, money, phone. To her credit she collected it all up and got into the Day Unit then broke down in tears! No matter, she's a fighter, and her inner strength is her resolve and very few people know how strong that is. She soon recovered and we settled down to the business  of the chemotherapy. Three hours of anti-nausea drugs, then 2 different heavy metal compounds: etoposide, and carboplatin, which work together well against neuro-endocrine cancer. Three hours later we are done, and handed a supply of more chemo to take at home next few days, along with anti sickness pills and steroids.

Expect not much first few days, but possible sickness next week. Time will tell and of course and more of that here in due course.

Home and a cuppa, and a relaxing evening completing the day.

Nuclear Medicine

Today saw the final test before the commencement of chemotherapy tomorrow. This was what is called an EDTA test. This test is done over 5 hours or so to ascertain the kidney function of the body: basically a radioactive tracer is introduced into the body, and then over a series of blood tests taken over several hours the results will indicate the kidney's ability to remove these heavy toxic metallic compounds. Essentially chemotherapy is a controlled way of introducing very toxic substances into the body to fight the cancer. It's important to realise that while these substances can fight the cancer they can do all sorts of things to our bodies system and functions which we don't want either.

Not least of these is the destruction of the immune system, meaning that one becomes very susceptible to infection. Part of my daily routine will be to monitor my body temperature: one degree above normal and its on the phone whatever the time of day and into hospital for intravenous antibiotics. With luck it wont come to that!

So we arrived at Canterbury this morning before 9am and reported to the nuclear medicine department. Shown to a waiting area unlike any other waiting area I have seen in a hospital: large comfortable chairs, water machine, toilets, a short walk to the coffee shop, pleasant lighting and comfortable heating! I was soon called to have the first injection, and then we were free till 11am and the first of 3 blood tests. We walked to the coffee shop and had coffee and doughnuts (why not!?) then returned for the first test. Bang on time, and done in less than 5 minutes! 12.30 for the next test so wandered off, bought sandwiches and more coffee.

With the third test left to do at 2pm we got a call from the Viking Day Unit at Margate confirming the start of chemo tomorrow and an additional bit of news: further to a recommendation from the pain management team they are also organising some radiotherapy on my arm too. It seems that the radiotherapy can help with pain relief in bones so the consultant was happy to go with that.

Of course there's always a downside and that is the likelihood that i will become pretty sick over the next couple of weeks but, lets face it: you don't get something for nothing!

For those interested read more about Nuclear Medicine here
Viking Day Centre

Meet the Wife!

I did promise at the start of this record some insight into my wife, and while I am going to do that here what you need to know is that no words can ever express what I feel for her. But this will hopefully give you some idea..so here goes.

Jenny and I "met" for the first time back in 2001 in an internet chat room. I had been married previously for some 20 years, the last several of those unhappily, as, with many things of a long term nature like this we had simply grown apart. Enough said!

I was instantly drawn to this woman, just by what she said, as I hadnt seen her face, had no idea what she looked like or what her situation was but within the space of a few hours we seemed to have so much in common with each other.

So who is this mysterious internet head turner?

Quite simply she is my soulmate. We agree on pretty much everything, what we don't like works for both, as does what we like. we often know what the other would say in response to a question. We are genuinely happy in each other's company, and prefer to be with each other than not. We rarely argue, preferring to talk things out and pretty much always find a compromise that suits us both.

So this meeting on the internet inevitably led to an arrangement to meet in real life for the first time. I remember sitting in my car waiting for her to arrive at that meeting, and when she did, I watched her in the rear view mirror as she got out of her car and I said to myself "YYYYesssssss!". Whatever, our future was sealed at that moment.

Early 2002 saw us move in together, and that wonderful time of discovery, learning, surprises that come with a new partner. It just got better every day. I think I can honestly say that I had fallen in love for the first, and only time in my life. The next 3 years were the most amazing of my life and promised so much more: we planned stuff, sat up late into the night chatting, making love, uncovering little treasures about each other that we didn't know were there but which made us even more in love (and lust!) every day.

Every relationship has tough moments, and ours came at 9.30am on 25th November 2005 when Jenny had a massive stroke. Our whole world was changed in that fateful 5 seconds. No warning, no prior indication, no time to prepare, just "bang", take that !

I am not going to bore you with all the details but if you want to know more i recorded every day of that in a blog too. You can find it at The Road To Recovery

The result of all that was that Jenny is now disabled, left sided paralysis, and has spent 6 years being frustrated at being unable to do the simplest of things. however, what we are, is a team, and our strength came from the love and understanding, the care and belief that we can overcome pretty much any obstacle. This we have done, and it's that prior knowledge, seeing Jenny overcome the problems that were thrown at her every day by the stroke for the last six years that has made me completely confident in our (yes it's a joint exercise, hence the "our"; it was before, and it will be now) ability to overcome this cancer thing.

We are already finding solutions to the pain and mobility issues I have encountered, we share more intimacy in those moments than any other couple I know.

So what about the soppy bit you ask? Yes we married not long after she came out of hospital after the stroke, on 14th February 2006, and I love her more today than I did yesterday, but not as much as I will tomorrow. She is my rock, and I hope I am hers. Very few people are lucky enough to meet their one true love, that special person that fate decrees is the one who makes you complete, whole, and fulfilled. I am one of those, thanks to her.

Managing the pain

Last few days have been totally overshadowed by major pain issues. So much so that I had to cancel an MRI scan that was booked for Thursday morning. Wednesday evening it came to a head when it took nearly an hour to get into bed because every movement was sending excruciating pain to my right arm and shoulder.

Having got into bed and relaxed I went to sleep. 3 hours later and the morphine had worn off, I woke to even more pain: and every slightest movement resulted in waves of pain. I was stuck! and couldn't get off the bed or stop the pain.

Finally we had to call an ambulance, and the two paramedics who came were brilliant. Unable to physically lift me because of the pain, they administered Entonox, which within a few minutes had enabled them to lift me into a sitting position, and then get off the bed. Entonox is the good old old nitrous oxide and oxygen mixture often used in childbirth to manage pain. Worked for me!!! I wonder what all the fuss is about giving birth: with entonox on hand, as Aleksandr the Compare the Market meerkat would say "Simples!"

So, the rest of wednesday night spent sat in a chair not daring to go back to bed. Struggled through Thursday with a visit to the GP who changed some of the tablets I take but with little effect: and as the pain was still bad last night, I sat up in a chair the whole night.

Being tired is bad enough but being tired and in pain just compounds the whole thing. This morning, through the oncology nurse at the hospital we arranged a home visit from a member of the Pain Management Team. A quick review, and a new pain regime which is already in place which might take 48 hours to work fully, but I have a good feeling about this because they are experts, and are already offering all kinds of additional help and advice as well as out of hours numbers, and further suggestions regarding the overall treatment of the cancer based upon the fact that the biggest issue right now is the pain. They have pushed a new prescription request through to the GP and that will be sorted this evening so that it can start working over the weekend.

Thank goodness there are some people in the NHS who know their job, and that the comfort and well being of a patient is of pretty high importance in a treatment regime. Compare that to the receptionists at our local surgery and in fact there is no comparison!