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Thursday, 19 August 2010

Thanks

Thank you for alll the comments, texts, Facebook messages, cards and presents.

Well I got to 45, so now I am closer to 50 than I am to 40!

Today is one of those "pull yourself together days" but it is good to know that I have the two most powerful forces to help me - The will and love.

There have been more developments over the last day, but I will focus on getting myself down the hospital and getting back this evening.  Hopefully, I will feel much better after I have received the blood that someone has generously donated.

Cheers - Swordfish

Wednesday, 18 August 2010

Happy Birthday!

As I write, it is still Wednesday night but very nearly Thursday!

I have tried to stay up past midnight so I could post this blog first thing but old age has caught me and I really need to go to bed!

So, dear followers, friends and family, I ask you all to send your finest wishes, your love and kindest thoughts to my lovely, wonderful, funny, inspirational (and sometimes a little grumpy) husband and shout out loud

"HAPPY BIRTHDAY SWORDFISH!"

I love you x

Beyond the Statistics - The Big Picture

I am aware that there has been a lot of detail and a lot of statistics from me over the recent period and perhaps less concise imagery of how I am feeling. 

It is clear that the last period has taken me down somewhat, but down from what was a position of comfort.  It has been a rapidly changing and moving feast and what I have been trying to do is to "dig faster" than it can move.

Firstly, although there has been a deterioration I would not say that I look ill.  Certainly anyone who didn't know me would not be able to assume that I had a well advanced cancer.  The only sign would be a very tightly cropped haircut, but even that has had good colour during the latest phases of treatment and so just looks like a very tightly cropped haircut!  I do look pale but not unnervingly so.  I certainly do not look like Uncle Fester of the Adams family.

When I started the radiotherapy I was 11st 9lbs, that's about 74kg over the last couple of weeks I have lost about 7lbs (about 3kg) so I am now 11st 2lbs and 71kg.  This is at the bottom end of what I consider a healthy spectrum for me and it should be recognised that a lot of the weight I have lost is "good weight" i.e musculature from shoulders, arms, back and legs rather from where I would like i.e. the waistline.  That said, I do not look thin.

The important thing from here, weight wise, is that I get a grip of the downward trend and stick a bottom on it.  This is more difficult that it might seem as it would be easy to say "just eat more" but it is getting increasingly difficult to get the calories in.  This issue is worthy of a separate blog.

The biggest concern at the moment is energy levels, but these are likely to be at least partially addressed with tomorrow's blood transfusion.  The treatment also demands that I rest more now.

Just as important is what goes on in my head.  When there is a sudden deterioration it is not always obvious to the outside world but the fact that I have lost weight, have difficultly eating have problems with my ability to carry oxygen (haemoglobin), potentially have problems clotting my blood, have been suffering bouts of pain is a heady cocktail to get a grip of.  All of these have manifesting and obvious symptoms except the blood clotting issue.  So it becomes more important to deliver on a personal level and make the necessary adjustments to keep the spirits high.

I guess that further near-term blogs will be about what I am doing to keep on top of things.  Of course I am not alone in this process and actions such as deferring my chemotherapy are actions by the hospital that are recognition of the burden that my body is having to carry at the moment.  When I failed to get into theatre in July I told the hospital that I still wanted to follow a curative path, if possible, and that they should feel free to "smash me" if it was necessary.  Well, it seems that they have taken this on board!

Things may be tougher than they were but it is not as if I am in hospital bed-ridden.  After an early start, I have finished work for the morning and will be checking in for the afternoon.  In the meantime I shall be enjoying a bit of fresh air with Kitten.

Tuesday, 17 August 2010

Plus ça change, plus c'est la même chose

As the french proverb goes; "The more that things change the more that they stay the same".

These next few days promised to be very difficult for me and  I had begun to "steel myself".

Yesterday's appointment with the Canadian osteopath put me on a better footing in respect of my energy levels, but the prospect of radiotherapy each day, chemotherapy tomorrow and blood transfusion Thursday were a daunting prospect.

I feel as if the treatment has given me a good old-fashioned battering recently (quite appropriate for a fish, I suppose) and not just on a physical level.  Just entering the main foyer of the Marsden triggers nausea from the distinctive disinfected smell.  Every time I go in I immediately visualise a intravenous bag of chemo.  Then there is is the progressive eating dysfunction.

It is times like these where it is obvious that you have come to a crossroads and you have to raise your game mentally and stay strong.  By that I don't mean just attempting to "barrel through" but to remind yourself that no matter how difficult the situation becomes it is the "holy grail" of a clean bill of health that it is important.  There is no point in thinking about it when it is too later, rather it is better to create a positive framework in which the treatment can get full sight of the illness and target it.  This means attempting to calm irrational fears and mental triggers such as that described about the Marsden foyer

In some ways this is easier said than done, but then there are events.

Events are always fast moving and today's clinic pre-chemotherapy was no exception.

Last week I was advised that my platelet count was falling and would be monitored.  Platelets are responsible for clotting the blood and insufficient levels can lead to bleeding problems.  Today I was told that they had fallen below acceptable levels (42 actual vs 100 advised), so I will be finishing today and tomorrow's chemotherapy tablets but will then wait a week before being reviewed.  It is anticipated that the chemotherapy, both intravenous and tablet, will begin again next Tuesday.

The most significant issue is assuring the continuance of the radiotherapy and the doctors are happy to delay the intravenous chemotherapy so long as it is administered during the radiotherapy course i.e. the next three weeks.  However, it is important that I restart the tablets as soon as possible as they work well with the radiotherapy.

My haemoglobin levels have fallen further to 10.4 from 11, which means that I am considerably anaemic though nothing like my initial levels. Still, I am well below the level of 12 required for best results of the radiotherapy.

The combination of these factors i.e. eating difficulties, platelets and haemoglobin explain why I have being feeling listless, so I can just focus on Thursday's transfusion which should make be feel much better.  I might need a good book as I am up for six hours of it.   All in all the changes from the expected are keeping me on a steady pathway (hence the title).

I will be digging deep from here.  There is only three weeks of treatment left, plus the run-off from the radiotherapy and chemotherapy so I am determined to make it work no matter how uncomfortable.  It is as clear as daylight now that this effort includes large doses of rest.

Thank goodness for the home entertainment facilities, he says whilst nudging up the volume on the surround sound system!  What a great investment they were, eh Kitten?

All this probably sound like I have spent most of my day on my back but I've manage three hours at the hospital, three working and a couple taking Huffty to football (though the latter really is sitting on my backside and chatting). Perhaps too busy for a quiet day right now.

Monday, 16 August 2010

Things Feel Brighter

I am happy to say that things feel a lot brighter this evening.  The Canadian osteopath has given me a lift after the physical stress of the weekend and in return I am ceasing to refer to him as the "Mad Canadian".  On more than one occasion he has queried why I use the term, as he considers himself to be very grounded.  That is reason enough to persist, but as he is doing a good job for me I will be "nice".  I conjured the term as an expression of his diversity and also because the term "Mad Canadian" seems to be an oxymoron.

Thanks to him anyway in helping to get me back on track.

Being in good physical and mental shape is of importance when tackling the agenda of the next three days, which will probably be the toughest of my whole treatment program.

Once again there is a real convergence and I am no longer just able to "barrel" my way through.  I will be as focused as usual but the itinerary will be more difficult for me to handle with reduced physical capability.

Although I do look a bit pallid at the moment though not outright anaemic but my energy levels still leave plenty to be desired, but that isn't surprising.

I haven't done any Chi-Kung for the last days and this has been a stabilising force for me so I will be off into the back garden as soon as I finish scribing this.  I really will look like a nutter standing there still in the pitch dark with my shaved head.  Perhaps I should sell card board cut-outs of the image for people to place in their gardens at night?  It would keep both the burglars and the foxes away.

Needs must (When the Devil Rides)

"Needs must" is a well worn English idiom, but few use the full expression "Needs must when the devil rides".

To me its meaning is very simple i.e. when you don't have control over things you just do what you have to.  That explains a change in attitude to blood transfusions on my part.

I have never objected on any kind of logical premise but now that my energy levels are "on the floor" I will look at the receipt of someone elses blood on my birthday as a gift which is, of course, what it actually is. 

I've been for a gentle but lengthy treatment with the Mad Canadian osteopath this morning using cranial techniques to work on my energy levels as well as some manipulation to sort out the battering that my back took on Saturday night.   left the treatment feeling that my back was in a much better state and with an lighter feeling about me. The heaviness of the last few days had taken their toll a little

I have popped into work for the morning, as it is around the corner but have fiinished for the day and will be leaving shortly.  I will be taking the rest of the day easily and continuing the attempt to build my energy levels back up.

Yesterday's trip to Notoplip and Sushi's was a suitably relaxed affair and I was given plenty of space to chill out.  I was able tuck into a "roast" dinner (without the roasties) but with the meat an veg reduced.  All very nice and a happy birthday from everyone.  Although I felt like I had as much energy as a damp dish cloth there was the usual laughter and banter that surrounds us whenever we get together and that is great for the spirit.

There is the usual radiotherapy appointment today at 4:00pm but there begins a battery of appointments from tomorrow.

Sunday, 15 August 2010

It's not all Doom and Gloom

What I have been writing about over the last few have been unpalatable but significant events which accurately represent my recent treatment induced decline.  I very much doubt if the tone of the blog will change over the next week due to the amount of treatment coming my way, but there are more joyous occasions on horizon.

Whilst I tend to focus on each day as it comes there is a significant date in a couple of weeks as the first of my female cousins on my mother's side is going to have a baby.  Roxy, as she is known on here, is not only my cousin (my mother's sister's daughter) but she is also my goddaughter.  I wish her well over this last period of pregnancy and I can't wait to see the baby.  A special mention also to Crazy Cuz who is Gandalf's daughter (Gandalf being my mother's brother).  I believe that Crazy Cuz is due in October.

The kids will be going to North Wales to the "Outlaws" at the end of the week where they are sure to have a good time.  They will be staying for a week and Kitten will be driving them up there but will be returning the following day.  Cymraes will be coming to see us for the weekend, starting on Thursday.

Treatments will mean  that I will have to kick back though I will be in work tomorrow but will be sure to be taking things easier.

Oh What a Night!

Birthday celebrations today will be low key due to a bit of a torrid night last night.

Up until now I have still been able to get my chemotherapy tablets down.  Not any more!

I had three hours of utter agony last night, which I will spare the details.  Suffice to say that I said to to Kitten this morning that the pain must have been close to child birth.  She was quick with the response when she said "I think so, because you certainly made more noise than I did.  It is a good job we have to do the giving birth".

A fair point but perhaps an indication of the level of pain I was in.

I have persisted with taking the tablets whole until now because that is how they work best but, as of this morning, I am dissolving them for which there are lengthy instructions from the hospital.

So we have a tired Swordfish and Kitten but still in one piece and looking forward to a good but simple day.

It is a good job that I am seeing the Mad Canadian again tomorrow because the contractions that he tumour was giving courtesy of stuck tablets were having the antagonistic effect on my back and it was going into spasm from top to bottom.

That said I feel surprisingly OK today and in some ways Kitten got the worse end of the deal as, having dealt with me Huffty then persisted in waking up through the night.

Saturday, 14 August 2010

A Day of Rest

After taking Huffty to football this morning where I stood and sat down (hardly challenging but nevertheless tiring for me today), I have done nothing but lie on the settee, watch television and snooze.

To be honest it is long overdue even if I don't feel any better for it.

I'm continuing my treatment with the Mad Canadian on Monday and I will be making every effort to keep this little body charged.

Kitten  and I are getting to grips with the diet side of things, which is not particularly inspiring but still capable of variety.  The secret is to try and get as many "good calories" in with as little intake.  Undoubtedly, I will be using supplement drinks going forward and I have some of my own tricks up my sleeve.  When I used to do heavier weight training I used to make my own supplement drink from egg whites, skimmed milk powder, water and chopped up banana.  It was a supplement between meals, full of protein and carbohydrate but not to overdone of the fatty side.  It also benefited from added vitamins and minerals in the skimmed milk powder.

At the moment I am sitting down to some soup, to which Kitten has added minced garlic chicken.  She has had a food processor as a gift from her parents for the last two years and it is the first time she has used it. I get the feeling that it may be coming in for some heavy usage in the near term!

Meanwhile this resting malarkey can be taxing.  How much footie, old episodes of Top Gear and current episodes of Red Bull X-Fighters can a Swordfish watch?

Light and Shade

It is obvious from the tone of the blog this week that this period has been difficult.

There can be no surprises here being deep into the fifth cycle of chemotherapy and two and a half weeks into some heavy duty radiotherapy.

The radiotherapy was always likely to affect my physical condition, especially when in conjunction with chemotherapy, but I am a little surprised by how quickly it has impacted.

Eating is not only difficult now but it is painful too.  There is nothing that I can eat or drink in comfort.   There is constant pain in my chest and back and in any swallowing action in the oesophagus.  This pain is at perfectly tolerable level though.

Yesterday was a bad day because whilst at work I got into trouble just trying to swallow half a painkiller, so it is a good job that I had covered this base at my clinic appointment on Thursday.  Whilst I spent yesterday morning from 10 until 1 in a lot of discomfort I was at least able to pick up some  heavy duty soluble painkillers yesterday afternoon.

At this stage I don't want to take painkillers regularly.   I would rather do what I said that I was going to do and rest more and just take painkillers when necessary.  I can be my own worst enemy and have just put in another sizeable shift this week at work, but now even I recognise that it is time reign things in.

Whilst the week has been difficult, it has been so due most probably to the treatment, so there is no cause for concern.  Whilst I breezed though the first 3 cycles of chemotherapy on my way to a supposed operation date in July this is now much tougher but the spirits are still raised even though the energy levels may not be, courtesy of the anaemia and the effects of the programme.

Tomorrow we will have a gentle celebration of my forthcoming 45th bithday, so that should be good fun for the family and we expect to be joined by the Notoplip clan.  We are yet to finalise arrangements but, if the weather is good, I fancy something simple like a boat trip down the Thames and a walk down the riverside or some time in Richmond park having a stroll and a picnic.  We will see what the consensus is.

I have taken Huffty to football this morning whereas Kitten has taken Boogle ice-skating as I didn't feel up to it but even standing for a couple of hours  has left me a little drained.  It's time to pull the "man flu" mindset and get some service around here :-)

I'll probably get "lumped" for that last comment as Kitten looks after me well.  I still haven't put a duvet cover on!