Start of a Tough Regime

So, on Wednesday I started another nine weeks of treatment.

The game plan has changed from

• Nine weeks of chemotherapy
• Six weeks break
• Surgery
• Ten weeks break
• Nine weeks of chemotherapy
• Eighteen weeks of just the trial drug

To

• Nine weeks of chemotherapy (completed)
• Five weeks break (completed)
• Nine weeks of chemotherapy including six weeks of radiotherapy (starting after the first three weeks)
• Reassessment to see if surgery is possible

My initial understanding about the latest cycle of treatment was that for the first three weeks I would have intravenous chemotherapy but for the 6 weeks of radiotherapy it would be tablet form only.  This was misunderstood by me and I will be receiving chemotherapy in all 3 of the 3 week cycles but only the carboplatin (no epirubicin) for the period that I will be having radiotherapy.

The heat that we have been experiencing this week (31-32 degrees Celsius) is magnifying the effects of the chemo in both the queasiness of it and the fatigue, so if the weather keeps up then things will be really tough by the time I get to radiotherapy.  I am counting on our British weather not being capable of such momentum and, although many would wish otherwise, I hope that I am right.

The uncertainty of whether I was still in a potentially curable position has been removed and that is of great relief, but it is a bit like "out of the frying pan and into fire".  The first few days of chemotherapy are particularly uncomfortable, so it is always good to try and stay focused on the wider prize, no matter how difficult that seems at the moment.

A couple of days and I will be through this malaise and in truth I would probably feel worse if I had a bad cold, so there isn't much to moan about.  It is good to have a moan now and again though.

Boogle's Birthday

My daughter was 9 on the same day as I went in for chemotherapy.  Not a great birthday present for her, but Kitten and I brokered the news in advance.

Boogle can't have too much to complain about though as she was spoilt with an iPod Nano and some lovely presents, vouchers and money from lots of generous people!  Her and Huffty also had a visit to "Build a Bear" after school on her birthday then there was the obligatory birthday party yesterday.

She has had a great time but, unfortunately, she is much more aware of my situation than Huffty is.  She thinks about it more, dwells on it more but does not communicate quite as openly as we might like on the subject.

The coincidence of my treatment and the day of her birthday was not the best timing especially as it made it impractical for me to attend her birthday party in a hot room with lots of school kids (not the best way to avoid picking up infection)

I have said before that I find there not to be such ready made activities to interact with my daughter as my son - simply because kicking a football around is enough to keep him more than happy.

Boogle loves music and her iPod was a timely gift.  She already has her own log on and personal area on the house PC, so I have created her own iTunes library so that she can manage all her own songs and downloads.  A simple activity to explain to her and continue to nurture a feeling of independence.

However, my trump card is related to DJing.  My decks have largely been idle since I finished DJing regularly but I know that both of the kids have been itching to get on them.  So, as part of Boogle's birthday present I created "Daddy DJ Vouchers" with each one entitling her to an hour's lesson.  This will give us some personal time, other than the ice-skating, and haul her in from the periphery; which is often where she prefers to be.

I am also organising some ice-skating lessons for her so that she does not lose the skills that she has already built up.  I dare say that I will join her on the ice but will let her have one-on-one lessons as I have taken her to a level where her youth will now quickly see our standards diverge.

A change of Scene

I was clear from chemotherapy by half past one this afternoon. 

There is no trial drug (bevacizumab) now and the change from cisplatin to carboplatin due to tinnitus on the last cycle has removed three hours from the process.

Chemotherapy isn't great but it is much easier to deal with certainty and implied progress than it is to deal with uncertainty or worse.

I am back in good spirits and that started from finding out last Friday that I would receive radical treatment.  I have since learned that radical is just another term for curative as a opposed to palliative but it is all good.

I haven't mentioned the weekend but it fits with the mood and on Saturday I went ice-skating with Boogle then later on Kitten and I got out for a night out on a River Boat disco down the Thames.

I treated myself to the most beer I have drunk all year (3 bottles of Peroni).  It was a good and relaxing night and virtually everyone came off the boat completely hammered.  I shan't make any named references but, of course, you know the people who are omnipresent :-)  Good spirits were the order of the day and it was fun to watch, especially as everyone had to catch the train home from Waterloo.  Many were incapable of recognising their stop on arrival and had to be cajoled off the train.  All good stuff.

The mood was fractious on Sunday which is indicative of moving from 5 weeks of freedom from treatment back into the sausage machine.  We moved back into chilled mode with a BBQ in the afternoon following an invite on Saturday night from the former "Worcester Park Beast" and his less fearsome good lady wife.  Needless to say the omnipresent Notoplip and Sushi were in close proximity at all times.

Demons Confronted

I have used the analogy for chemotherapy of the beast climbing a mountain and taking a drink at the lake - in the analogy the beast is me the drink is taken from the lake at the foot of the mountain.  The mountain pictured is Cadair Idris in Wales.  Each of the three previous chemotherapy cycles was imagined as a journey up a separate leg of a mountain range.  I make no apologies for using the picture for 4th time on the blog because it works for me on many different levels.

One of the myths of Cadair Idris is that if you sleep at the summit you wake up as either a madman or a poet.  It is about meeting with your demons and that is what the last week and a half has felt like.

If you look at this period I have gone from the expectation of surgery on 14th July to being back into chemotherapy and into radiotherapy with the possibility of curative surgery.  The overall shift is not so severe and may be helpful in ensuring cure.  Where the "demon" aspect comes in is that there has been a moving picture with the outlook veering between the potential of no possible cure to likely cure.  This has emanated from the Marsden but I am a great believer that your external reality is a realisation of your internal state.

There has been a shift and a short but tough emotional journey in this period, a bit like sleeping on the top of Cadair Idris and battling against a howling wind in pitch black to keep a tent in place.

I am through and those who are close to me and have also felt it are through and the sun is peering through after the darkest hour.

It is said that it is the darkest hour before dawn.  In Egyptian mythology it is the scarab (dung) beetle that pushes the dung ball (sun) through night into daylight ensuring its safe passage - I can assure you that I feel I have moved my fair share of sh*t over this period.  It goes with the terrain but it is character building!

Today and Tomorrow

Today's radiotherapy meeting well.

Whilst tthe oncology team suggested that cure from chemotherapy and radiotherapy was very unlikely due to the bulk and location of the tumour, radiotherapy clearly see it as a possiblity.

I will have six weeks of radiotherapy and it will be administerted five days a week.  This will take place after the initial intravenous and tablet based chemotherapy cycle of three weeks.  I will also take chemotherapy tablets every day  (capecitabine) whilst the radiotherapy is on-going.

I feel very good about getting back into treatment and the obvious aim is to get to a position where cure is possible.  Anything more is a bonus, anything less is a disaster.

It was suggested that I might be very tired by the end of the radiotherapy and that blood transfusions will be administered if by haemaglobin levels fall below 12.  At last count my haemaglobin levels were 14.3 which is in the normal male range between 14-16.   This should be put into perspective against my lows with anaemia at the beginning of the year of 7.5.

So, it is straight in to chemotherapy tomorrow; there is no peace for the wicked!

A tough period ahead but let's just say it would good to put this beast under pressure - I refer to the cancer, of course!

Today's Meeting - The Next Phase

A number of issues were cleared up by today's meeting.

Firstly, I will begin chemotherapy on Wednesday.

The chemotherapy cycle of three week will be followed by a course of radiotherapy.  During the course of radiotherapy I will continue to take chemotherapy tablets (capecitabine) but will not have any intravenous whilst the radiotherapy is on-going.  So, the treatments will not be concurrent, per se.  I will know more about the radiotherapy after tomorrow' s meeting.

Perhaps the most significant points to come out of today's meeting is that last week's CT scan did not show any major tumour growth since the scan on the 2nd June.  It was considered that the scan showed some growth but that it was somewhat subjective.  The reason that I will be receiving the additional treatment is because of the tumour markers (in the blood samples) and the anecdotal evidence I provided.

It goes to show that it is worth vocalising everything that is going on because if I had not mentioned the recent problems I have been having then I may have gone straight to theatre only for the cancer to return quickly.

It's not great that chemotherapy starts on my daughter's birthday, but "beggars can't be choosers".

Overall though, perhaps things aren't quite as bad as they were beginning to look.

Things Move up a Notch

In this afternoon’s meeting with the oncology team I will likely discover the reasoning behind my new treatment programme and more detail about it. I will probe gently to get an idea of the different strands of discussion that allowed the multi-disciplinary team meeting to come to their conclusions. I will have a clear idea of the new regime of chemotherapy and as to whether it will include the trial drug bevacizumab. I can then move on to tomorrow’s meeting with radiotherapy to discuss and learn about that treatment.

In some ways all of this is slightly irrelevant as, whilst acknowledging that the treatment is crucial to my recovery, I am also starting to feel that the only person who can pull me out of this disease is me. If my body is still willing then the treatment, the force of my will and the love and support that I am gratefully receiving will combine to release me from the disease.

The standard treatment has failed to get the cancer under control, so that makes me realise that the odds have moved considerably against me but I am acutely aware that it is the individual not the odds that is important ultimately.

Radical Therapy

I got a call from the Marsden this afternoon asking me to attend a radiotherapy appointment on Tuesday.  So I found out that it will be radical treatment in advance of my scheduled Monday meeting. The treatment will have the aim of still getting me to surgery and the ultimate aim of cure.

I will be receiving chemotherapy (to start next week) and radiotherapy to be scheduled.

The details will be sorted out next week.

So the best possible news that I could hope for.  I guess it is going to be tough but, given that the situation has become serious it is best to throw as much at the disease as possible. That is much better than the alternative of palliative care. Given that I am generally in pretty good fettle the conversation could have gone something like this if only palliative care had been offered (click on the play button below):

Keeping it Real

I had the CT Scan yesterday and it is now down to the Multi-Disciplinary Team meeting this afternoon to decide what they are going to do with me.

There has also been another letter giving a summary of Monday's appointment and it is stated that further treatment is either radical or palliative.  It is also stated that the situation is serious.

Whilst I can assess what the different parties have told me and the correspondence I have received the only true marker I have is my ability to eat and how I feel.

On the eating front things have deterorirated noticeably since chemotherapy finished, but are no worse than before chemotherapy.  The pragmatist would observe that isn't a good place to be after over two months of heavy toxic treatment designed to get the disease under control.

Of course that isn't the full picture.  The tumour that affects the eating is only part of the equation and it is the nodal disease (i.e. outside the oesophagus) that is just as important.

The best that I expect is to start over with either more of the same chemotherapy or a combination of radiotherapy and chemotherapy.

None of this holds any fear.  Any anxiety is founded in the possibily that the results of the scan show the disease to be too aggressive to cure and that treatment will be palliative (care not cure) from here on.

We will find out on Monday.

Meanwhile life continues as normal.  Off to the gym at lunchtime and ice-skating tomorrow with Italian Clan Man and Boogle.

Kitten Does Zumba?

I know it would be easy to assume that I am a lucky boy, but I believe that Zumba is a Latin dance based exercise class that is sweeping the country.

Back at the very beginining of the blog we discussed it because one of our esteemed customer contacts "Marmot" has been doing it for months.  Sam the Eagle and I were threatening to practice our moves on our desks at work so that we could get in the spirit of it at our next project meeting.  We would think we looked like Ricky Martin but we would probably look more like Ricky Gervais.

Shortly after, Sam the Eagle reported that Mrs Sam was a Zumba addict too.

Well now Kitten is getting in the Zumba way.  Shake Kitten Shake.

Oh, by the way, I had my CT Scan today.

Anyway as I was saying.....Swordfish likes Zumba, Zumba, Zumba

Think I could DJ one of these, plenty of Latin toons in the box.

"Senor, vodka con Fanta Limon y hielo, por favor para mi". Second thoughts I had better make that a "Zumo de manzana".