R.I..P

Paul passed away today after almost a year fighting a battle he could never win. He was with his family, us all laughing and joking until the end. We know he'd appreciated all your love and comments on here,  carry on writing them as we would love to read them and hear your memories, funny, sad, serious whatever. We do ask though that all are good, happy, fun memories, as we want to celebrate his life not mourn his death. Lots of Love, Jenny, Sarah and Hannah xx

WONT BE BEATEN!!

There have been a number of mentions that I should keep people updated as to my progress with regards to the cancer. The last post was too dark and really didn't give the correct information as to both my attitude and my position. This will not beat me and as of today I am fighting the cancer in such a way that is different from how it appeared previously.

We have seen the medical team and the physio and have a regime to try and strengthen both my legs and increase my general well-being. This should enable me to get out of the bed within a certain amount of time, although we don't quite know how long this will be. What I will say again is this will not beat me.

Allied to that, Jen is my rock and it is only with her that I can do this. I thank her tremendously because without her this would not be happening. I love her more than anything. Thank you Jen. 

a bastard.

cancer is a bastard.

it suddenly creeps up on you like a puddle of water rolling across the floor that you haven't seen.
Even worse when someone tells you it has spread and is terminal you think "Oh shit! what now?
Not much left"

Suddenly there are alarming thoughts that take over the whole mind.

Legal, Stupid, silly, ridiculous thoughts, why me? what next, don't even go there, how the fuck does one type straight, how do you think clearly and so on etc etc

Just a very quick post for those who have been following Paul's blog.
After an almighty effort to get down to Cornwall to see his Mother ans Sister and the tremendous effort to get both himself and me (Jen) home, he has taken very ill and has been admitted to the hospital, the prognosis is not good, i'll not be lying to anyone , however now is the time to enjoy every day as it come and to not hang ones head so with that in mind , if anyone who knows Paul wishes to see him please leave a comment and contact here and i will try to find a way.
Jen

Oncology-schmology. The best laid plans, and all that.

So here was the plan: Canterbury hospital at 12.45 Thursday, review treatment going forward, grab some lunch, and drive to Cornwall for a few days with mum and sister. Simples! Errrrrr nope!

For a couple of weeks before this appointment my hand had been swelling and the moment we walked into the oncologist's consultation his eyes went to the hand and he was focused on that. "We need to do a doppler scan to see if the cause of the swelling is some kind of blockage. We can do that straight away. Nurse will arrange that"

This is now 1pm and she comes back: earliest doppler was 3pm. So that was a wasted 2 hours at the start of the afternoon. We eat lunch, and wander down to the Deep Vein Thrombosis department to get the doppler sorted, which involves booking in here, then somewhere else, then back to the original place etc etc but finally the doppler gets done and they decide that there's a partial blockage way up at the top of the arm near the collar bone which may be causing reduced blood flow down the arm and hand resulting in the swelling. Because of this they can't let me go!

Now they must do a blood test, and wait for results!

We wait, and potassium is low, haemoglobin is low, white count is high, and the blockage needs addressing. None of these will wait, and Cornwall looks like it may be receding into the distance. Upshot is we have to start taking Clexane. Clexane thins the blood allowing better flow, and is self-administered via an injection in the fatty part of the tummy which nurse duly shows me how to do, and that's all good.

We depart Canterbury around 6pm for Cornwall and of course it's all stress and getting tired, bank holiday weekend, crap traffic on the M25 and M4. No chance of getting to mum's that evening we book into a Travel Lodge at Reading (Jen is more than relieved by that idea because driving like that was not a good plan)

Friday morning we drive West and get to mum's late afternoon, with me totally knackered having run the gauntlet of hospital, tiredness, stress, holiday traffic, bad weather and more. I have to admit I cannot do the "jump in the car and drive to Cornwall" thing any more. That will need to be planned in advance for sure!

Plans are being made for the return on Thursday as I have to attend hospital Friday and Monday for further tests. Oncology are wanting to see me in 8 weeks, and we have decided that we will push these people in a more forecful and pro-active way to ensure that all the issues that keep coming up are not glossed over "till next time"

Up and Down

Seems that while I sleep and my arm remains motionless it swells. That means waking up two or three times a night in pain. Once i get up and start moving,have a shower etc within an hour or two the soreness subsides. So it's a bit of a catch22. Jens regime to keep the baseline of pain relief set is working well so thats good.  By spreading out the tabs better it seems to have stopped a lot of the profuse sweating that was a real nuisance. She is very good at coming up with plans like that and doesn't often get them wrong so I am grateful to her.

As mentioned before the next big date is 23rd August when we see the oncology consultant again to review whats going on and see where we go moving forward.

More of that when its done.

Damn Swollen Arm!

While the surgery to pin the fractured bone from March seems to have healed brilliantly the lesion in the bone seems to be causing problems on and off. Basically if the arm isn't kept active, and it doesn't stay in a slightly elevated position especially when I sleep the arm, and especially the hand around the knuckles becomes very swollen and uncomfortable.

It's difficult to be pro-active about this because while you're asleep there is not a lot of control regards the position of the arm relative to the body; even if you start off in the right place it's all too easy for the arm to move while asleep. However it's something that I will just need to persevere with.

Allied to that the radiotherapy affected my hand in that the palm and tips of the fingers became sore to the touch rather like a burn (which I guess that's what it was).

We were prescribed a course of pyridoxine which I am still taking and that seems to help but again, as with a lot of these things its a slow process. What I have also been doing is treating the hand with aqueous cream that certainly moisturises the skin rapidly, and promotes an easing of the tightness and soreness of the skin, and cools the hand too. Aqueous cream is a simple thing but often these are effective, and it certainly seems to help.

Read about pyridoxine here

With reference to the weight loss that has been ongoing for some time i am now down to about 18 stones which means I have lost about 60 pounds. While I can afford to lose it I don't need it to continue and it does seem to be settling out now. What it has meant is that all my clothes like trousers, and shirts don't fit! A couple of months ago I bought a pair of trousers with a 50inch waist that fitted me at the time. We were going out the other day and when I went to put them on they were way to big in the waist again. I have just ordered a pair of 46inch trousers!

A Shoulder is Good!

I haven't written much lately: the radiotherapy which lasted 2 weeks was a boring traipse of 10 days every day to Canterbury for a 10 minute treatment that held no surprises.

Since then I have to admit I have had more than a couple of bad days, more emotional than physical, although I am feeling better today. Jen is a rock and maintains an attitude that rubs off on me for which I am both thankful and grateful for. When you're feeling crap it's amazing what a good attitude next to you does!

Yesterday was a good example: all I seemed to want to do was sleep, and that has to be hugely frustrating for her but I am thankful that her calm demeanour meant I came through that sleepy time and we ended up awake together, watching TV through the evening.

It's difficult sometimes when you become emotional about nothing in particular, and you can't seem to control that, or understand why you feel that way: for me I just want to cry without quite understanding what causes it, or starts it off. It's important to have a shoulder to lean on when that happens and I know Jen gets frustrated too but at the same time she is not afraid to put her arms round me and offer the comfort I need when I feel like that. Thank you darling, it's much appreciated even though it doesn't always seem like it at the time!

We have a wait now for the next appointment with the consultant in a few weeks time and we see where treatment goes from there.

Radiotherapy:

So I am 4 days into the 10 days of radiotherapy, and some of the the effects have been expected, and some have not. Very little effect from the first couple of days, but Wednesday found some real nasty aches and pains in the arm which I hadn't expected, and when we went for Wednesday's treatment it was a real struggle to lay on the table of the the Linear Accelerator machine: it's solid, and mighty uncomfortable. Added to that for some reason the radiographers could not seem to get me lined up correctly that day and had to keep adjusting my position prior to the treatment: this took about 20 minutes and became exceedingly uncomfortable. By the the time the first treatment was done on the arm I was in agony, and then they had to manoeuvre me to the position for the neck irradiation which did not help either!

To help the pain relief knowing it's coming, as I have explained through this blog many times, is to take liquid morphine (oramorph) which is fast acting against breakthrough pain. I took oramorph as we arrived at the hospital but that wasn't early enough. Having endured the pain in the treatment as we walked out of the hospital the bloody pain subsided!

Plan for Thursday: take the the oramorph "en-route" which we did today and the pain, which today was less than yesterday anyway, was already subsiding as we arrived. Add to that the "setting up" prior to the actual treatment is rather hit and miss because it all depends on exactly where you end up laying on the the table: today took about 5 minutes and the whole process including the treatment took about 20 minutes.

So with Friday left this week and a rest over the weekend allied to the treatment next week being only on one spot (the neck) it shouldn't be so bad.

As always we wait and see!

Two Weeks of What Next

So tomo yrrow starts the 10 days of radiotherapy and a bit of a step into the unknown. Preparation last week included creating a method for accurately lining up the treatment machine so that it "fires" the x-rays at exactly the same spot each day. Compared to normal photographic x-rays these are quite high powered as they are designed to remove the cancer cells rather than simply photograph them.

This is done by using the scans from the CT machine and then "marking" the relevant areas using permanent tattoos; they are simply small dots on the skin but are in fact identical to the tattoos we get in tattoo parlours. I have 4 marks: just below the centre of the neck under the chin, one at the base of the sternum, and one at the shoulder, with the fourth at the elbow of the right arm. They enable the technicians to align the machines exactly each time to ensure the correct area is being bombarded.

There are 2 areas of "attack" in this treatment: first is the lesion in the arm itself which is quite swollen and prominent just now, and also pretty painful too. With luck the radiotherapy will reduce the size of the tumour and relieve some of the pain, but we are warned that initially the pain can increase before it gets better.

Second is a suspect area of soft tissue around the 1st thoracic vertebrae. They have noticed something there and feel its worth the treatment so better safe than sorry I say!

This treatment will last over ten  days from this Monday, until Friday 6th July with a break on the middle weekend. After that of course we will review the progress and see what effects there are and from then further decisions can be made moving forward about the course and choice of treatment in the future.

One question which has come up in our minds relates to the original bladder cancer which of course was where this all started back before Christmas. The arm which was caused by the secondary metastasing of the cancer has been the big focus for 3 months with really nothing happening with the bladder cancer. We have made a mental note to ask the consultant about that  when we see him next so at least we know if we should bear that in mind or whether the previous treatment has dealt with it.

For now it's into the radiotherapy tomorrow at Canterbury every day for 2 weeks and see how that goes.
  

Radiotherapy

Consultant has decided that the arm and some soft tissue suspect areas on my neck may help if treated with radiotherapy. So the chemo , as reported earler has finished for now after 4 cycles instead of 6, as it was totally knocking out my immune system. Chemo is a whole body treatment and the drugs affect every part of you whereas radiotherapy is location specific: they are going to hit the lesion in my arm and some spots on the neck where they think there are some suspect areas.

Doc gave me some leaflets about radio therapy, and again it amazes me that everything you get is done via Macmillan Cancer Trust. What on earth would the NHS do in regards to cancer treatment and support without Macmillan? Very little I suspect!

Radiotherapy Information from Macmillan

Information on Side Effects of Radiotherapy

Looks like I am in for more tiredness, and some other odd side effects but if I am lucky they won't be too bad. Of course, side effects are simply that: whatever the treatment throws at you you have to deal with it, and I am under no illusions that you have to accept those all as part of the illness, and whatever it throws at me I will manage.

Looks like there may be an increase in pain before it gets better, so might be another consultation with the pain management group if that's the case, we shall see how it goes on that score.

As an aside here I would like to thank everyone who has sent their messages and best wishes especially of course family and for the support that makes such a difference to keeping me focused daily on managing, and dealing with the cancer. Every message, and every comment makes a huge difference. Thanks to everyone.

Marking Time

A quiet week really: since we have managed to re-establish that pain threshold baseline in a better place, the arm has been less troublesome, and added to my careful choices about what I actually do with it, I have been pretty pleased with the results.

There's not much happening on the treatment front till the 25th June: that's when 2 weeks of daily radiotherapy begins: though next week we have an appointment for the "preparation" for radiotherapy, whatever that actually means. Unfortunately the radiotherapy is scheduled to be done at Canterbury, rather than Margate which is a longer journey but all things considered Canterbury is not that far. Only takes about 30 or 40 minutes to get there so it could be a lot worse. I have heard of people who travel 2 hours each way for radiotherapy daily so mustn't complain!

One of the most annoying parts of the medication side of things is just how rubbish the doctor's surgery are at understanding the patient's need to get medication in a timely manner. The basic idea is that if you need a repeat prescription you call/contact the surgery and request the drugs you need. Now, doing this with, say, 3 or 4 days supply of drugs left should be ample you would have thought? In our case, the surgery doesn't even seem to look at a repeat request for about 48 hours, and then it might take another 24 hours to actually write and sign the prescription. In this age of modern communication, they insist that all requests are made in writing but are unable to accept requests via e-mail, and the form on the surgery website is disabled! When I enquired about this with a receptionist the other day she actually put the phone down on me. Frankly, doctor's surgery receptionists are so far up their own non-clinical ass thinking they know what you want that they rather lose sight of their responsibility to the patient and that they are there to provide a service where the patient is the most important part of the whole thing! Go to NHS websites and one of the biggest things they always say is that patients should always be treated with care and dignity among all sorts of other superlatives: hmmmm, I wish someone would point that out to the receptionists at our surgery.

Lessening the Pain

Last few days has seen an increase in the pain in my upper arm: now it isn't anything continuously so bad that i am climbing the walls, but it has been on and off getting me down. A conversation I had with Andrew Thorne of the Pain Management Group some time back suggested that it was always possible to increase the dose of morphine or gabapentin to compensate for this.

I have currently been taking 60mg morphine along with other meds so a couple of days ago decided to increase that to 90mg. As well as that the regime is based on doses of the morphine and gabapentin and paracetamol in various combinations at 8am, midday, 4pm and 8pm. What wasn't covered was the time between 8pm and 8 am. Seemed a bit silly because when you sleep, and are immobile for several hours, on waking up thats a time when the arm really hurts.

Anyway, to counteract that I have added a couple of doses through the night to keep the baseline topped up, as I tend to wake up every couple of hours anyway. Added to that I have the liquid morphine which can be used to counteract sudden breakthrough pain if all else fails: and last couple of days the arm has not troubled me very much at all. I have also been very conscious to be pro-active regards not over stressing the arm, or using it too much as that often promotes pain: lift something too heavy or pull too hard on a shirt sleeve and 15 minutes later, pain.

Yesterday and today as a result of the better regime I have woken with little or no pain and I have to say that I feel pretty good today. Long may it continue

aches and pains

Getting Blood

While I am looking forward to the next stage with the 4th chemo cycle being followed by radiotherapy on the arm etc, I have been having some ups and down with pain in my upper arm.

I think most of it is settling and stuff after the operation, which I imagine because of the cancer lesion will take some time as it has to grow round the pin, and the screws that hold it in place, as well as the lesion itself.

Mr Smith the consultant who did the pinning has said he is happy with the results and  doesn't need to see me any more which is good news!

Today it's final Chemo, and we are waiting for the radiotherapy schedule: means daily travelling to Canterbury for a 10 minute appointment but that's where they do it so no choice. With luck it will only be 5 sessions, but that may extend to 12 depending on their case meeting this week. We should know soon what the plan is.

I must say that the Viking Day Unit is brilliant: the environment, the staff, and the whole ambience makes for the best treatment one could wish for.

One funny moment from last week: when they did the blood transfusion they gave me 2 units of blood, and they bring the blood from the fridge in a red box which we likened to Dracula's Lunch Box! Picture below, as well as a couple more from Viking.

Dracula's Lunchbox!

Staff Nurse Carrie

Happy Chappie!

The meeting with Mr Raman, the oncology consultant went well. We have come up with a new plan based on a couple of things. Firstly, there had been a concern, which I have been a little loathe to mention too much which was that there were a couple of "spots" that had appeared on a previous scan on my liver. Of course the liver is a vital organ and we wouldn't want stuff happening there, however the scan from last week seems to have shown that these spots have now gone: this means that the 3 cycles of chemotherapy thus far have done the job we had hoped for.

Furthermore, as we have now got to increase my white blood cell count on Friday meaning that Chemo cycle 4 is postponed till next week, Mr Raman has decided that four cycles will at this time be enough. So, this week we do the transfusion, along with a dose of G-csf to promote white blood cell increase, and next week we revert to cycle 4 of the Chemo. The new plan is that after cycle 4 we will try some radiotherapy on the arm lesion. This will not only target that lesion specifically but should also help with management of the pain that comes from the arm.

Radiotherapy is slightly different: looks like the arm will be 5 doses of radiotherapy on a daily basis Monday to Friday in about 3 weeks time. There is also a question about some soft tissue problem in my neck area they will discuss at their case meeting next week, and if they decide that's an issue the radiotherapy may extend to a couple of weeks daily on the neck again to target a specific area. I am not so sure about the neck, because I think the soft tissue damage was caused after the fracture when i was wearing a sling for a number of weeks and am only now getting to be able to straighten my neck properly; we shall see what happens on that score.

All in all though, I have to say, a good result thus far, and I am a "Happy Chappie"!

Chemo Cycle 4 Postponed

Went to the hospital this morning for the regular blood test and assessment prior to the Chemo dose scheduled for Friday. As reported I haven't had any bad reactions to the chemo at all really, other than losing my hair. However somewhere in the recent past in the lead up to the chemo we were told that after about three cycles the immune system is totally shot to pieces.

Sitting here at home and the phone goes, it's Viking Day Unit saying that the blood test results show that my white cell count is at rock bottom, and they are delaying my chemo on Friday but I need to go in anyway to have a blood transfusion to up the white cell count.

Seems its not unusual, as while we were in Viking waiting for the assessment this morning we were chatting to another guy who had exactly the same issue and they delayed his chemo for a week because his white cell count was low.

It's disappointing but I have to accept that its all part of the process.

Just waiting...

It's been a funny week or so. One day the arm (which seems to have been the focus of everything this past month or so) is OK, and seems to be improving, and then the next day its painful again and the "lump" that I presume is the cancer lesion along with the new bone and tissue growth that's there since the op seems to have a mind of it's own and kind of moves around: one day its on the side, then its on the back of the arm. I am sure it's not quite as bad as that but that's kind of how it feels.

Now last week was pretty quiet except that I finally got my redundancy from Addison Lee. They have been absolutely fantastic, and have supported me brilliantly. I am not going to go into details but suffice to say they did far more than they needed to and i am forever grateful to everyone there for the support and help they have provided.

Next step as I enter the world of benefits is to sort out everything that we can get in such a way that there is no "gap" in the finances. I think we have started that in good time and with the help of our Macmillan benefits advisor we have today begun that process. More on that as it happens.

This week I will be half way through my chemotherapy treatment and as I have said before, I can consider my self, thus far, very lucky in that i have had very few bad effects of the chemo. Tomorrow (Wednesday) we have the usual blood tests and assessment prior to chemotherapy cycle 4 along with an X-ray of the arm, and a review meeting with with the consultant following the arm operation.

Thursday sees an appointment with Mr Raman the oncology consultant, and we should get results of a CT scan which he asked for and which I had last week: hopefully there won't be anything too bad on the scan! Friday and it's the 4th chemo dose at Viking day centre in the morning.

All in all I have to say that apart from some tiredness and loss of weight I really don't feel too bad and life goes on in a pretty relaxed way and I can only hope that's how it continues.

Fitful Sleep, and a Positive Outlook

Nights seem to be hard work at the moment. We tend to be in bed at reasonable hours, and I get off to sleep OK. The worst thing is when you wake up, think you have had several hours sleep, look at the clock only to find its an hour, or even less! Several episodes like that make the nights long, drawn out and pretty frustrating. Jen tends to sleep quite lightly, so if I wake, and sit up, or get a drink, she will wake too. Makes for long drawn out nights where you end up waiting for the morning to come round. On top of that of course it means you're not getting the benefit of a good night's sleep which right now is pretty important.

Over the last week my arm has been quite painful but certainly nothing that I can't deal with and I guess the dynamic nature of both the cancer, and the chemo, along with the recovery from the pinning of the fractured bone will all be contributing to some possible pain as the whole thing continues doing whatever it's doing in there.

On a positive note, the lump in my arm seems to have become far less obtrusive this last few days. It's still there of course, and I do still get some pain with it, and still struggling with use of the hand due to the radial nerve pressure but the fingers seem to be moving better, and there seems to be a slightly improved range of movement overall. Of course there is no scientific basis for this but perhaps the chemo is having an effect on the lesion in the humerus?

I have today had another CT scan, which will enable Mr Raman to have a comparison with the original one I had way back in January: we are seeing him next week so should have results by then. At this point we are approaching half way through the 6 cycles of chemotherapy so while there's still a way to go on the planned course, one might hope that there could be some effect.

From my perspective I can only stay with a positive mindset, and not allow negative thoughts to come to the fore. This cancer will not beat me, and that is the simple fact of it.

Up and Down

There are some odd things that happen as a result of the chemo. Of course the tiredness hits daily, and that will not go away, but here's an odd one: after about a week, my voice goes husky!  Noticed it before but didn't make the connection, then again this last couple of days voice went all husky again!, after the chemo last Friday. Very odd!. Lets see how it goes next cycle .

Have also been getting a lot of pain in the arm again: I think the lesion is either moving a bit, or being affected by the chemo. The pain meds help but it does get you down a bit, and there's not much that can be done, bearing in mind that the bones that were pinned are growing back, and still creating pressure on the radial nerve, which of course creates pain.

I suppose it's one of those moments where I have to accept that this goes with the illness, and that it's a part of the process. In all honesty, it's not unbearable so I can live with it till it reaches some sort of conclusion.

Cycle three begins

Yesterday the chemo third cycle started with an uneventful visit to the Viking Day Centre.  All went according to expectations and we were home by lunchtime.

Of course the reaction tends to be delayed a few days anyway so nothing untoward at this time. Must have slept awkwardly last night as my arm is painful: taken the regular pain meds so hopefully they will kick in soon and help. I guess a lot of it is the fact that as there is a tumour there it's likely to be dynamic for a while: as the tumour and the the op settle bearing in mind that the chemo should work on the tumour.

As well as all that it's 3 days of additional tablets related to the Chemo dose, including 4 a day of those damn "horse tablets" again. Honestly how they keep a straight face when they give you these and say take 4!

Oh well here goes lol!

An interesting statistic

Had our meeting with Mr Raman, the oncology consultant this morning. Pretty pleasing stuff: he's happy with progress thus far, and there seems to be nothing unexpected happening of any real concern to him at this time. He has decided to have another CT scan to assess what, if anything, else may be going on, so we will wait for that.

I addressed the issue of the weight loss and at this time he said there's not too much to worry about, and we will simply keep an eye on it. The consensus seems to be that you are undergoing chemotherapy, along with fighting cancer, and so expect resources to be used up, and to get tired. Everybody we talk to seems to be of the opinion that I "can afford to lose some weight anyway" so I guess I will accept that I was, and still am a fat old bastard, and just you wait till I have lost another couple of stone...pahhhh.

On a more serious note he did throw an interesting statistic at us: Neuro Endocrine cancer, over previous experience responds very well to this regime of chemotherapy in "something like 85 to 90% of cases" which I have to say gives me great cause for optimism: this statistic, and my absolute mindset that I will not be beaten by it says give up now cancer, you will never beat me!

The English Way

Ever since the "days of the Raj" the English way of dealing with pretty much anything has always been "Let's have a cup of tea". We here at "Chez Knox" are very much subscribers to that long standing tradition. So remembering that sleep at the moment tends to be a little broken, with times often where we are both awake at 2, 3, or 4am, and often we say "shall we have a cuppa?" which means coming downstairs and making tea. Not always a good idea when you're half asleep, and unsteady on your feet to be walking downstairs, and even less so trying to carry two cups of tea back up.

First inspired idea from Jen: Get a kettle!. Easily done, and about £7 in Tesco. Simples!

Of course then you still have to get milk etc upstairs but the real problem is if it stands too long it can go off. And of course if you take enough to make more than just the morning cuppa you might end up wasting milk, and still not getting the tea when you actually want it.

Insiration number 2: She goes online and buys a mini fridge! Perfect. So now the mini fridge and the kettle are in the spare bedroom, water supply in a large container, and milk in pint cartons in the fridge. Job done!

This fridge, which cost less than £30 even has a power lead that can run off a car power point so it can be taken on long journeys with cold drinks: Nice one wifey!

Weight loss

Had my blood test and assessment for chemo cycle 3 this morning. As always they go through a set list of questions to ensure all is as it should be, along with the obligatory weight check. Now, on 16th Jan I was 142kg. Today, 125.4kg.

This is under 20 stones, and I can't remember the last time I was under 20! However, although I can afford to lose weight they have suggested we mention this tomorrow to Mr. Raman as we have a review with him at Kent and Canterbury Hospital just to see what he thinks. They will likely weigh me tomorrow anyway so we shall see what he says. Of course we are only a third way through the chemo treatment so if the cancer is causing this loss right now there is plenty of opportunity for it to be slowed as the chemo continues and hopefully the tumour reduces in size etc.

On a more abstract note, as promised, a couple of pictures of the new plants etc in the garden which certainly brighten the place up!

New Flowers

Flower Power!

One of the most important things which has to happen throughout the treatment is to find ways to relax. As the Summer is coming we decided that to be able to sit in the garden amongst some nice planted pots and stuff would certainly help over the next few months. Now our garden is basically a lawn, about 60 feet long and the width of the house. With Jen as she is and me the same right now we invited Jen's sister and brother in law over as they have a beautiful garden.

We had gone to the garden centre, (the prices are enough to make you ill) and bought some stepping stones and pots of various sizes along with a selection of various flowers. These stones were then set into the lawn to allow the pots to stand and create a display: as a starting point for what we hope will  be a nice place to sit and relax in the summer (if there is one of course!) and which we can add to over time. We hope to add a water feature, as there's nothing as soothing as the sound of running water, and some outdoor lights along with a table and seating. If the weather allows we might be able to eat al fresco.


I won't even try to list the flowers we bought because I am not a gardening person and I am still trying to get over how little one gets foe the money, but if the garden becomes a good relaxation place then of course it's worth it. (Pictures to follow, if it stops raining!)   

Sleeping Beauty

This last few  days have been pretty unremarkable in that again (touch wood) I have had very little reaction to the chemo, and am already looking forward to the end of next week and the start of cycle 3.

Last weekend I did have a couple of times when I felt rather nauseous and while the effect didn't last that long it was a little disconcerting. However I do have a supply of anti-sickness tablets from the chemo team which seemed to have done the trick.

This week I seem to be forever falling asleep! Again, it's something different, as previously I was hitting a sort of wall in the afternoons but this week all I need to do is sit down, and I am asleep!

As I had previously been told the chemo effects can change along the way and this would seem to be one of those effects. So while I hope there are no worse effects to come, whatever will be , will be.

Settled

A week since the start of chemotherapy cycle 2. To be honest, very little after effects thus far to speak of, which is good. Having seen the orthopaedic consultant a couple of days ago, and the fact he is pleased with the pinning operation healing process I really am pretty much sorted right now.

Only issue is the ache from the radial nerve etc, and with luck, as the chemo progresses, I would expect the lesion in the bone to reduce (that's the ultimate plan of course) and reduce that pressure on the nerve.

I did have one bad night in the week and sat for several hours on the side of the bed till the morning, and at that point I was going through a bit of a !why Me?" time. I think it's inevitable that there will be some emotion, and it is not good to bottle it up: that morning, I sat on the bed and cried, for ages, for no apparent reason, other than a "Why Me?". The close and intimate connection which I have with Jen of course means that those kinds of emotions will spill over to her so for an hour we sat and blubbered together.

We have of course experienced these emotions with Jen before, and even noqw she still gets the frustration from her stroke, but the difference at the moment is that the stroke is "finished" in that the damage is done, and it's finite: we know what she can and can't do, and that's very well defined for us. With the cancer right now it's far more dynamic, and so what is always in the back of my mind is the question "Where next?".

At the moment there are no other indications so I try to dismiss that possibility for now and we work to deal with what we know about, which is the bladder and the arm. Anything else we will overcome as required!

I only have one thing to add, a little picture I found on the the net this week which I attach below.

The Pin

So we had a review with the orthopaedic consultant yesterday. In terms of the fix he's happy that its settling down well enough. There is some regrowth of bone that seems to be putting pressure on part of the radial nerve which is what essentially controls all of the movement of the wrist and fingers so it's a bit of a struggle to do anything dexterous right now. I managed to take a pic from his screen of the pin which as you see runs top to bottom of the humerus, while the fracture is still there.

Because the cancer is at the centre of the bone we have to let the chemo work to hopefully reduce the size of the lesion which will lessen, we hope, the pressure on the nerve. At that time, and if the chemo does it's job then we are hoping to see some increased use of the hand again. That of course will be a good indication that the chemo is at least stopping the cancer from increasing, but that's very much a "time will tell" thing.

The pin, as you see goes whole length so it certainly has stabilised the arm, and the next time we see him the consultant has said bring a pen drive and he will download the whole set of x rays from start to finish which I can then put here.

For now though :

Not such a good weekend

Having had the chemo on Friday, and knowing from before that any effects will take a few days at least to come to the fore we settled down for a quiet weekend. Unfortunately it didn't work out quite that way. For some time I have had a lump that's fairly hard, under the skin around the site of the pinning op. This lump may well be a part of the post-operative recovery as all the bits that were disturbed by the pinning settle down. However there seems to be a pressure on the radial nerve that runs down through the arm to the hand and it has been causing a very persistent ache all through the arm, and creating pins and needles and numbness in my right hand. Added to that the radial nerve is used to control all those dexterous movements we make with our fingers and so my hand is pretty much useless right now.

Because the pain is nerve pain we have increased the dose I take of gabapentin which is specific to nerve pain, but I have spent the last two nights struggling to lay comfortably, or to get much sleep at all.

We did get a call from the orthopaedic consultant's secretary who said he isn't overly concerned about the swelling but we are going to get a fresh x-ray before the review on Wednesday just to be safe.

This week we are having the Short Synachten test as well to ascertain if there is any ongoing cortisol problem. Other than that it's a bit of a waiting game for any effects from the chemo. I guess I just need to accept that tiredness, aches and pains and feeling unwell along the way are part of the next few months for me and I had better come to terms with that.

From the sublime to the ridiculous

Sometimes it's quite surprising how others see us and especially those who know us well. Jen has always said she liked my hair since it was cut short, and over the last couple of weeks a thin layer has grown back. She has this thing about rubbing the top of my head and going off into waves of ecstasy at the feel of the hair on my head!

So the other evening I was likened to a "little soft downy chick" as she stroked the the top of my head, eyes rolling and all cooey like. Then came the sting in the tail. "or maybe.. just maybe Uncle Fester!"

So how on earth does one get compared in the same breath to a cute little chicken, and a character from the bloody Adams Family I ask you?

Part of the Fester thing is because at the moment due to the operation and persistent use of the sling I tend to lean my head forward making my neck look shorter and causing me to look downwards.

So ...

little chicken or Uncle Fester?

who knows.

And so it goes...more toxic waste

We arrived at 10 at Viking Unit to have the chemo, and wonder of wonders there was a disabled space just outside so that was good! As before it was a simple process which involves consecutive intravenous administering of the toxic waste ,, err chemo drugs!

Basically they start with anti nausea drugs, then steroids, then the two chemo drugs carboplatin, and etoposide. Between each they flush you out with saline, and all this is done through a cannula which allows each drug tube to be switched on and off and is administered by a clever pump. All pretty painless really and the whole thing was completed in 3 hours. We also have a supply of anti sickness pills for the next few days, and 2 days worth of chemo horse tablets (remember those?) to take on Saturday and Sunday.

If I am lucky I won't have any more adverse reaction than I had to cycle 1 which wasn't much at all, but I am not holding my breath as they do say that reactions can change each time. Mind you, as I have said before, I will take whatever it needs to beat this cancer crap and nausea and sickness certainly won't stop me.

With all that toxic waste in me we may well save on lighting as I am sure I will be glowing in the dark for the next few nights!

Let's see how it goes.

"Seconds away...Round Two"

I have likened this treatment to a kind of boxing match: it goes in phases rather like the rounds in a bout, in this case its 6 x 3 week rounds. All the top boxers will always tell you that they need a great team in their corner and I would like to say that I have the best team I could wish for: from my wife Jen, and the girls, as well as the rest of my family for all their love and understanding, even thus far when I have been nothing short of a right old grump!. Add to that all my friends on the net whose messages have given me so much strength so far, and to the people at Addison Lee who have been very supportive and very understanding right from the start. I know it won't be the last time I say this but thank you all for that support: It means a lot.

Among all the tidying up at home and getting things organised here its back to the serious business of focussing on the fight  from Friday. Was at the Viking Day Unit this morning for blood tests and pre-assessment and all seems to be OK so it's 10.00am Friday for the start of cycle 2.

Jen also had a call from the Spencer wing this afternoon and they are organising the Short Synachten test to check cortisol levels, and reported also that the blood test this morning gave a perfectly acceptable potassium level so hopefully all that is settling down and there won't be any obstacles to get in the way of the chemotherapy drugs doing their job over the next couple of months.

I do hope that the firs chemo cycle didn't spoil me regards the after effects and reaction, because everyone is quite surprised just how little reaction I did have: but come what may I will take whatever the treatment throws at me and whether it's good or bad I intend to see it through and to stay on top of the cancer and its effects.

One of the important things that happens all through this treatment is monitoring of those effects, and as we have already seen, things like blood tests. Another indicator they always use is weight: now when I was first diagnosed my weight was some 142 kg which equates to 22 Stone 5lb. Today when I was weighed I topped the scales at 129.3 kg (20 stone 5lb) so that's 2 stone gone in a couple of months. Rapid weight loss is not always a good sign, but the chemo nurse at Viking Day Centre said it wasnt anything to worry about at the moment but they will monitor it.

With the new haircur, and new physique I might need a whole new wardrobe soon.

Clips, Cleaning and Chemo

Haven't blogged for a couple of days as we have been on a mad spring clean and among all that we moved the pc's which meant switching them all off. Basically it came about because our eldest has just got a new flat so was moving out. We took the chance to have a major spring clean and thanks to both the girls, and their respective boyfriends who have all chipped in we have redesigned our lounge, and we are very pleased with the results.

Had my clips all taken out on Thursday: the op seems to have healed very well so there should be no problems with any infection worries heading for the second chemo cycle next Friday. So although the second cycle got delayed it only seems like we lost a couple of weeks.

Considering the major trauma that is involved in pinning the bone there are little post operative problems other than an underlying ache that is removed by use of the morphine tablets which I have for pain management so as long as I continue to use those its perfectly manageable.

So there's a picture of the operation site after removal of the the clips. Pretty neat work I think?

There are 2 other incisions lower down on the inside of my arm just above the elbow. One of those clips was weeping a little so it has been dressed but again that should be off tomorrow and the dressing was only a precaution anyway. All told I think there were about 40 clips over the four incision sites.

We will get Easter weekend out of the way and then next week we are heading for blood tests on Wednesday and all being well the chemo on Friday.

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! 

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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.