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!)