Cold Turkey

I have been (chemo) drug free now for two days - just as I wrote that I realised how it might come across! so I thought I had better put in the "chemo" - and I thought I had better blog about it.

You will remember that I have one week in three without drugs, and this is it.

At the moment I feel a bit of a fraud - I am supposed to be going though chemo but actually I feel fine. I went to SJH last week for a one-off check up

I gave up on this post for a long time, but now I need to finish it as there is new stuff to tell. If you don't want to know the gruesome details then it is time to leave now.

We pick up the tale as I was at SJH for my check up. The took some more blood from me - they seem to do that at the drop of a hat - and went through a list of possible symptoms. They were pleased and slightly surprised that I did not have many problems. The pins and needles which lasted for two days with me seems to affect people for a couple of weeks normally, so I guess I got off lightly.

The second week of the drugs was fine and on into the drug free week. In fact I felt a bit of a fraud. People kept telling me how horrible these drugs were and I seemed to be sailing through without any particular problems. I was going to work in the morning and coming home in the afternoon and as often as not logging on during the afternoon and evening.

All of that came crashing down over the weekend though :-O

One of the possible symptoms is diarrhoea and there are strict instructions on when to call the hospital. If I have diarrhoea more than four times during the day or once overnight then I have to call the doctor, either the unit at SJH or the Western, depending on the time of day.

Well I went to bed at about 11pm on Friday but only managed to get in to bed at 1am. After that I was up as 2 am, 4 am and 6 am - suddenly I didn't feel such a fraud. I felt rotten. I had been up half the night and felt drained (literally).

I called the Western and they sent me to the Emergency GP at SJH. I was prescribed some Loperamide and told to rest. I kept having to run until about lunchtime, but then I was OK.

There were still rumblings throughout the day and apparently my stomach kept Helen awake during the night, but I was OK most of the night, until around 6.30am and then again at about 8.00. The registrar at the Western called just as I got out the shower and I was called in for observations on Sunday morning.

We dropped the kids of at church on Sunday and then threaded our way across the city. We parked in the special Chemo car park and were admitted to Ward 4.

More blood was duly taken and temperature and blood pressure, then I was shipped of for an X-ray. I was offered the option of being taken down to the x-ray in a wheelchair, but as I wasn't feeling too bad at that point we elected to walk. Sure enough It was the other side of the hospital. I did manage, but I was actually tired by the time we made it back to the ward.

We were left alone in our en suite luxury room. Helen dozed, trying to catch up on a bit of the sleep she needed. Her plans for this weekend were completely out the window - and her class were in full-time for the first time.

Eventually we needed to go and pick the kids up from church. We went out to the corridor and told the nurses that we had to go and they rushed off to get the doctor. Dr Storrie, the registrar who had seen me was waiting for the blood tests to come back from the lab.

Dr Storrie came out to see us and we explained the situation. She was just waiting for the last of the results to come back up and asked us to hang on for a minute, so we left anyway.

She did phone later that afternoon, to let me know that the results showed that I was dehydrated (which was not a surprise) but other than that I was fine.

She also phoned the next morning, just as we were getting up. I had been fine most of the night, but just at that moment I did feel the need to rush off.

Later than afternoon I got a call from the unit at SJH - news travels fast! They were tentatively allowing me to come in the next day, but the final decision would be made on the morning, by the visiting Western Consultant.

I had taken the day off work and was waiting at home the next day (this was Tuesday 2nd Sept).
Sure enough I had a call from the unit the next morning postponing the second cycle for a week. Since I was too ill to have chemo I decided to go into work.

It was a good call by the doctor, because that night (Tuesday) I was bad again.

I have to say since then there have been one or two incidents, but mostly I have been ok. I went to the GP today for the pre-chemo blood test that I have to have the day before my hospital chemo and I had a call from the SJH unit earlier this afternoon.

I am lined up for my second dose tomorrow, although it is likely to be slightly lower doses, both of the Ox drip and the Cap tablets. I am due at the hospital at 2 pm, for an afternoon session, which is not as convenient. I guess the moral of the story is to book early to avoid disappointment.

I will be taking my scarf and gloves again, so if you hear of any sightings of the Abominable Snowman in Livingston tomorrow, don't worry about it - it will just be me.

I promise not to leave it so long next time - I know there are some readers who find this almost as exciting as East Enders or Corrie (but I can't compete with Neighbours). When I read back this post (yes I do read it before I post) I see that the end does not really have anything much to do with turkeys at all!

keep smiling

Graham

Return of Count Dracula

I guess the headline from this week is that I am still here J

Actually that is not true – the headline from this week is that Dave and Libby (from Kings Church) got married. I just form a sub-plot of that, and that is the way it should be too, but more of that later.

So, anyway, the last time we met I had just survived my first dose of chemo. This was the Oxaliplatin drip, with the tingling fingers. I have to say that for that Tuesday afternoon I felt pretty grotty, and lay about on the settee feeling a bit sorry for myself. The next morning was my first dose of Capecitabine (maybe I did mention it last time). I don't think I had too many symptoms, after all. Obviously for the first couple of days I was taking some pretty powerful anti-sickness pills (although you wouldn't think so from the size of them). I was able to go to work every morning, although I do go home at lunchtime (and then log on remotely!) I have been getting tired in the afternoon and evening and my mouth does taste a bit goppy, kind of metallic – not quite bad enough to need more anti-sickness, but contributing to a general low-level grot (that is twice I have used the word grot or grotty and I will try not to repeat my self anymore).

As I mentioned, the highlight of the weekend was a trip down to Newcastle for the wedding of Dave Hill and Libby Cant. Dave works for Kings Church Edinburgh and is one of the nicest and most genuine blokes I know. Libby is just lovely and they couldn't be better for each other. Libby comes from Newcastle, so we went down there for the wedding. We decided to stay overnight and booked into a Travelodge. It wasn't posh, but then we only slept in the room.

We left at about 9.30 and I drove down the A1, listening to crackly Radio 5 Live and the coverage of the Beijing Olympics and the fantastic Super Saturday golden streak (four gold medals and a clutch of silver and bronze). We checked in to the hotel (six of us sneaking in to one room), switched on the telly and watched the reruns of the golds while we got changed.

The wedding was lovely. The church was nicely decorated and the service was really nice. Matthew Clifton-Brown prayed for the new couple and Dan Hudson spoke during the service.

After the service everyone went to the local Memorial Hall where there was some food – really nice, just as you get there without having to hang around for ages while the photos were taken. The speeches were not too long or boring – in fact they were very good, and I now have a lot to live up to! – but I suppose that I have several chances to get it right.

There was more delicious food as the evening carried on, with a Ceilidh band providing the music. I managed to have one pint, and danced twice – after that I was exhausted. We left at the end and made our way back to the hotel. We all crashed out and apart from Becky (who had to sleep on the floor in a sleeping bag) slept till morning. In the morning there were more golds in Beijing and breakfast with Errol and Michelle Minnot in the Little Chef. We left and started northwards. We stopped off at Holy Isle, which is one of my favourite places. It is so peaceful and tranquil. I have always fancied staying there, just to see what it is like when the tide is in and the island is cut off.

We spent an hour or so there before going back over to the mainland. We stopped just in the mainland side of the causeway as the tide was due to come in.

If you have never been there when the tide is coming in, it is worth while doing so. The sea comes in so fast – the sand is very flat and it is easy to get caught out on the sand – Claire and Angie almost managed it, and there were a couple of people further out!

There is also always one car trying to get across at the last minute, driving across the road as the tide comes in. Sure enough, one car came back with its wheels under the water – Errol has pictures. As they drove past the crowds on the road the driver and passengers looked very sheepish. J

The journey back to Edinburgh was uneventful and we got back just at teatime.

The Hospital had asked me to go in for a quick check-up a week after the first treatment. This is the only time they need to see me, just to make sure that I am not having any seriously adverse reaction to the drugs.

I went in on Tuesday, and they immediately stuck a needle in me and proceeded to take pints of blood from me. They went through a list of symptoms and checked that I was ok. They seemed surprised that I only had the pins and needles for 48 hours. Everything seems to be ok and they sent me home with a cup of tea – in fact they offer you a cup of tea as soon as you walk through the door, even before I had seen any of the medical staff – they did the same last week, so I guess that is the way they work down there.

There is a lovely lady called Agnes, who volunteers there every Tuesday. She is a member of East Calder Church and brings in home-made cakes and stuff for patients and staff – this is lovely and just shows how much people care.

So, after a week and a half of drugs, I am doing ok. I get tired in the afternoon, particularly if I push it during the morning. I am ok if I finish by lunch time, but one day this week I stayed on till around 2.30 and I felt it later that day.

This has taken me a long time to write – I stared it much earlier this week, and I apologise for the delay. I am slightly surprised but very pleased that people are reading this to keep up to date – it is quite humbling actually.

I will post another entry soon – about Helens first week at work as a teacher.

Thanks

Graham

First treatment

Yesterday was my first chemo treatment at SJH. Helen and I arrived at about 10.00 yesterday and went down to the chemo unit. Don't remember if I have desctibed the unit - small but perfectly formed.

The unit is buzzer controlled and leads in to a comfortable waiting area, with a tv, internet, small kitchen and settees. We arrived and were given a seat and a cup of tea while I completed more paperwork. I was also given some anti-sickness pills. After about 10 minutes we were called though to the treatment area, along with about four other patients. The patients get given comfortable seats and the partners (most people had brought partners to wait with them) get normal chairs.

I was hooked up to the drip and the first one they gave me was a glucose drip - not sure why, but there you go. That lasted about 10 minutes and them they hooked up the Ox (see previous posts for full details of Ox). That takes about two hours to drip through and finally they gave me another glucose drip to flush every last drop into my system.

They kept feeding us with cups of tea, so much so that I had to get up and go to the toilet half way though, as my bladder was about to burst. All the drip machines have batteries so it is just a matter of unplugging and wheeling the stand along the corridor.

While I sat with the drip my arm was wrapped up in an electric blanket - for the full two hours, a bit odd really - to keep me warm. As the drip dripped, it felt as if my arm was filling up. By the end of it my arm felt quite odd - stiff, slightly sore and very sensitive to the cold.

After the second glucose drip we were given a large bag of drugs to take home, including the Capecitabine (the other chemo drug) and three different anti sickness drugs.

For those of you who are interested I have Granisetron and Dexamethasone to take on the day I have the Ox drip, more Dexamethasone (different dosage) to take for the three days after the drip and Domperidone to take as and when.

I am on 2000mg of the capecitabine twice a day, four lovely peach coloured tablets (I am not sure that the colour has any effect, but there you go) to be taken just after a meal, twelve hours apart - they are quite strict about that. I have to have this tice a day for fourteen days for 8 cycles. Now that works out as 224 doses and I have had my first (not that I am counting).

We left the unit at about 1.15 and drove home. Helen suggested that I drive as she would not be around for any of the other treatments (she started work today - not a happy bunny), so I drove home very gingerly, but safely. I also was wearing a pair of ski gloves and a scarf, so I was looking a bit of a pillock, standing in the entrance of SJH getting my parking ticket wearing my ski jacket and gloves and a woolly scarf - the reason I was dressed like this is described below. For those of you that I see, I will probably be wearing this sort of get-up for the couple of days after the OX drip, every third week, wednesday to friday, whenever I go outside.

Touching things is odd. One of the main side effects of the Ox is the sensitivity to cold. If I touch almost anything colder than my body, even at ambient air temperature for more than a second or two I get pings and needles in my fingers and hands. The effects appear within about two or three seconds, but dissappear just as quickly after I let go. They say that I should not go into the fridge (I did sneak in for some mik to go in my tea though).

The effects are most noticable if I tough metal, although I have noticed it touching other things too. This, along with tiredness, was the main simptom that I felt yesterday. I am not as tired today and the pins and needles are not as bad today either. The reason for the scarf is that the drug affects the nerves - hence the pins and needles, and can affect the nerves in the throat - leading to the sensation of my throat closing up and wheezing. The fix for this is to keep warm - hence scarf and gloves - drink something warm - hence the three cups of tea at the hospital - and get out of the cold.

I had a dentists appointment today, and braved the outside world, walking down to the surgery. I took my scarf, but didn't need it. I was fine walking, although the weather today is not too bad (the sun is out!)

So that was my first chemo dose. I have to go back for a one-off appointment next week, for them to check that I have not had any drastic side efects, but that should be a five minute job and I am free now for three weeks - appart form the hundreds of pills I am taking every day.

I will try to keep you up to date as I go along.

God bless,

Graham

Twice as good

If one post is good, then obviously two posts is twice as good. The last post was a catchup, after the long silence (four whole days). This post is about tomorrow, the first day of my chemotherapy.

I am due at SJH at 10 am tomorrow for the first dose of Oxaliplatin. The drip generally takes about two hours to be administered, but I guess that we will be there longer. I am assuming that they will want to weigh me (again) and stuff before starting, and probably monitor me after the drip has finished.

The ward/centre/clinic at SJH is really nice. There is an entry area, with settees and internet access. Through into the next area, there are offices and the main treatment area, which is by default, more clinical. There are, however, comfortable seats for the patients. There are areas for relaxation therapy, some of which I might partake, but some I will not be using.

I will blog again tomorrow, and let you know how it all goes. The point of this blog is to document this treatment and reassure everyone about this, both friends as I go through the treatment and hopefully other fellow sufferers, both of colon cancer and possibly other forms of cancer.

Back tomorrow

Silence is golden

I have been away from my computer for four whole days – four days!

With our three older children away at Newday (they had a great time by the way) and one of our wonderful friends taking Katie away for us, we were left completely alone – I can't remember the last time we had three nights on our own – about sixteen and a half years ago I think. Anyway, we took the chance to slip away. We went to the Norton House Hotel, just outside the centre of Edinburgh. We spent the afternoon in the pool at the hotel. They had a very nice pool, along with a sauna and steam room. We had our meal at The Apartment in (doesn't have a website!?!) which was excellent although I thought the portions could be bigger.

I had Sea Bass with Saffron Roast Potatoes, with a rather nice chardonnay, followed by the cheese board. I am finding, as I get older, that I am choosing a sweet much less often and cheese more so. A piece of good cheese along with homemade oatcakes is much more satisfying.

We spent the next day in the pool again. It was good to swim again, although I suspect that I may have pulled a couple of muscles in my stomach. We had just left the pool and ordered lunch when we received a text from Becky saying that they would be back in twenty minutes – we were not expecting them to get back until that evening. We rushed our lunch (Helen burnt her mouth) and raced round the bypass to meet them, only to find that they were not due back for another hour – grrrrr – then they turned up two minutes later :-O

So now our house is full again, with the kids back from their various holiday excursions, and we are all – including Helen – are getting ready for school next week.

More soon….

I'm back

This post has details of the nasty side effects of the drugs I am due to get - if you are squeamish go here.....

Well we went along to St John's Hospital (which I will now shorten to SJH) Chemotherapy department this afternoon, for a meet and greet.


This was another session where they went through all the side effects of the two drugs I am due to get from next week - it is all starting to seem a bit scary........


I have just had a scan through my previous posts to see if I mentioned which drugs I get and I can see them (although maybe I just missed that bit). Anyway, here goes.

I am due to get a regime called Cap/Ox - short for Capecitebine and Oxaliplatin

I start off with Oxaliplatin, once every three weeks, at the chemo department at SJH where they put me on a drip for a couple of hours. They give you a hand leaflet detailing all the side effects. If you don't want to know the score, LOOK AWAY NOW (sorry)

The first one mentioned is diarrhoea - a bit ironic really. Next up Stomatitis or mouth sores and ulcers. Next, the ever popular Nausea and Vomiting (although they give me even more drugs to stop this one). There are dire warnings about infections and how I will be more susceptible to them - reduced blood count and all that. After this, the perennial Tiredness (it is not an excuse to get out of the hoovering, honest).

Finally (for this drug) the interesting one. Neuropathy. This drug affects the nerves (don't sneak up behind me) and this shows itself as numbness or tingling in the fingers and toes. this can be triggered by exposure to coldness and they recommend that I stay away from cold areas, chilled foods and cold drinks, to the extent that opening the fridge to get something out can trigger it. They suggest getting an oven glove to get things out of the fridge(!) and wearing a scarf and coat to avoid sudden gusts of wind, even next week!

It can also affect the nerves in the throat, causing a feeling of breathlessness and anxiety at not being able to breath properly. In fact, it does not affect the breathing in the slightest, but apparently it can feel that way. Scraping the car in winter may be fun and as for frozen peas (that was pea not pee, disgusting boy)..... This lasts for a few days after the treatment ends (so that will be a two or three days every three weeks).

So much for Ox.

Capecitebine is given as tablets every day for two weeks. based on my height/weight I will probably be on 4 - 5 tablets in the morning and the same in the evening - if you shake me I will probably rattle. So how does this one affect me?

Well there is diarrhoea, stomatitis, nausea and vomiting, higher risk of infections, tiredness (sound familiar?) The different one for this drug is Palmer/Planter Erythema, or red and sore patches n the palms and soles of the feet.

Oh yes, and I shouldn't become pregnant as there could be complications !?!

After that I get a week off before it all starts again. Apparently the effects are in the shape of a cosine graph (start at the top, go down in a graceful curve until about day ten when I start to fight off the symptoms and the curve starts to climb again) over the three week period (convenient really). I am not sure however that the graph ever gets as high as at the start.

The risk of infection is stressed a few times. If I get any sort of infection then it is a drop everything and run situation. I have programmed the numbers of the SJH department and the Western department into my phone in case of dire emergencies, so if I am with any of you and I start going blue and drooling at the mouth, grab my phone and call the hospital at once (OK, I am unlikely to turn blue and start drooling, but you get the idea - watch out for me :-) )

So that is it for the chemo drugs,, but they give me three, yes, three different anti-nausea drugs "just in case". And if none of them work I can call them and they will give me another one that they keep in reserve for stubborn patients.

OK that is enough for now. I am off to watch my symptoms DVD (oh yes, they gave me a DVD too).

Someone tell the others they can look back now.

visiting rights

Today is going to be an interesting day. I will blog again later probably, but I am visiting St John's Hospital to see the oncology department where I start my treatment next week. Today is an admin day, where they weigh and measure me to calculate the dosage exactly, along with all the admin surrounding it.

Today is also exam result day for Claire. The Scottish exams are much earlier than the English ones and consequently the results also come much earlier. We recieved a text at eight o'clock today with Claires results - she did fantastic (of course we always new she would :-)) This will open up loads of doors that actually seemed to be closing.

well done Clairie

Newday

The house is quiet at the moment as Claire, Beck and Andrew have all left for Newday 08 this morning. They have been looking forward to this since the day they got back from Newday 07, this time last year.

There are about 8 of the Kings Church Edinburgh Youth going along , with about the same number of students, either going with them or meeting them on site. They are joinging about six thousand other seenagers and students to spend a week worshiping and learning about God, along with gigs in the evening and loads of other cool stuff.

They traveled down in a rickety old minibus to Utoxeter race course where Newday is held every year. they left at about 9.00 this morning so they should be there by now, puting up their tents and living on potnoodles for the rest of the week.

Several years ago the ground where they were was flooded out and the weather foreast is looking a bit damp for the rest of this week, but I am sure it will not put them off and they will all have a great time.

cheers

Graham