Went to the hospital today expecting to receive my latest dose of chemo but was told that my bilirubin was too high. Bilirubin is a component of the blood and if the liver is not functioning 100% more bilirubin is produced. It is also the blood component that causes jaundice. So chemo is postponed until next Tuesday as bilirubin prevents the chemo from doing its job properly.

The last 3 weeks have been pretty standard following the pattern of previous 3 week cycles with my up and down days

Off to Surrey for a few days tomorrow and then off to Norwich for Easter weekend.

Will report next Tuesady when I hope to have had the chemo if my bilirubin count is down.

Blood Cancer markers down

Saw the consultant on Tuesday and he came into the consulting room quite excited (as much as consultants get excited) saying "good news" and waving a piece of paper. He put the paper in front of me and asked me to look at it so I could share his excitement. There were just some numbers on the sheet so I asked him to explain and he told me I was looking at the numbers of cancer markers in my blood which showed a reduction of 5-10% over the various measurements since my last treatment on 6th Feb.

Up until then they had been showing a slow increase but to reduce by this amount is quite significant. It indicates that the cancer has probably stopped spreading and that the growth of the tumours have at least been arrested and they may even have shrunk. We won't know for definite until I have my next scan which will be approx a couple of weeks after the 4th course of treatment which is on 31st March.

I then went and sat in the comfortable treatment room chair for 4 hours while I was pumped full of the chemo drugs. During this time, I was served with tea, coffee and lunch and managed to watch a film on their portable DVD. The whole 4 hour period is actually quite pleasant.

The last 3 weeks

Medically

The last 3 weeks have followed the same pattern as the previous 3 weeks. I.e. I have 4/5 really good days immediately following treatment and while I am on the steroids. This is followed by 5/6 really grotty days as my blood count drops and I just feel totally lethargic both physically and mentally when just getting dressed is a huge effort. I then come out of that low period and feel OK until it is time for the next dose. The other thing that I have suffered from is trapped wind. This has been very uncomfortable and is a great relief for me when it shifts - the same relief may not be shared by those around me when it does shift

I still get very tired and apologise to the avid watchers of my website that updates are not made as soon after matches than they were in the past. This is because I am usually in bed by 9:30pm.

Socially

We've managed some trips away as well during the last few weeks while I was in the period following the "down" time. We went to Devon for a few days to visit our sister-in-law and her family. She runs a small holding and breeds goats. She has 27 goats, 4 geese, loads of chickens and 7 cats. You can imagine this kept us involved while we were there.

Following that we had a Kempster family gathering in Stratford on Avon when all 21 members (4 generations - I am the 2nd generation not the 1st for those that were wondering ) of my immediate family turned up to celebrate Christmas. We have decided that as we do not manage to get together at Christmas, being spread far and wide around the UK, we would have a gathering in February. This is instead of buying each other Christmas presents but of course a night and a meal in a hotel is a lot more expensive than buying presents. However, it is good to get to see everyone.

We then had 5 days in Rothesay on the Isle of Bute in Scotland. The scenery was magnificent, particularly as it was seen in all sorts of weather e.g. snow, sleet, hail, rain, cloud and sunshine. The snow on the mountains looking out of our hotel room window was particularly good. This was a super break with 6 great friends and we really enjoyed it. We will certainly be planning similar trips to fit in with my "up" times.

Next Treatment

The next course of treatment will be on 31st March and will be the last in this set of 4. After that I have the CT scan to see what has changed and then the docs will decide what happens after that. The consultant seemed to be expecting that I would have a further 12 weeks (4 lots) of IV chemo. However, we will wait and see what the scan shows.

I will report again on, or shortly after, my treatment on 31st March.

Had the 2nd lot of intravenous chemo yesterday and now know what to expect for the next 3 weeks as it will be very similar to my experience of the last 3 weeks since my 1st lot.

The IV Process

The actaul IV process is very simple and takes 4 hours to complete. First a canuala is put in the back of your hand. This is the bit of kit that the various drips are connected to so you don't have to keep being injected. The 1st hour you have 4 "preventitive drugs pumped into you. These are to counteract the side effects of the main chemo drug. e.g. sickness, diarhoea, tingling in the hands and feet etc. You then move onto the main event which takes 2 hours when the main chemo drug is pumped into you. Finally, you have two more preventitive drugs pumped in which takes a further 30 mins.

All this is done in a very comfortable environment. You sit in a reclining chair so you can lean back and go to sleep if you want. Tea, Coffee, biscuits and lunch (albeit sandwiches) are provided. There are portable DVD players available and a wide section of DVDs to choose from. Also books and radio. The other patients seem to be very sociable and often you just chat to them .

The Last 3 weeks

Following the 1st treatment and for the next 5 days or so, I felt great. Full appetite, less tired, wanting to do things. I was taking steroids during this period which counteracts the full initial effect of the chemo. It is also during this time that, as informed by the nursing staff, the tingling in the hands, feet and mouth took place. Nowhere near as severe as I had been told it could be but still noticeable. If my bare hands/feet touched or were exposed to anything cold, they tingled just like pins and needles. My actual hands/feet did not feel cold - just the tingling sensation. Simialrly with my mouth/throat. If I had a cold drink, I had to sip it rather than gulp it which I forgot to do on a few occasions and got the tingling sensation.

The 2nd 5/6 days, I felt absolutely crap. Totally lethargic both mentally and physically. It was hard work to get out of the chair to go to the loo. All I really wanted to do was sleep. I just felt rotten. The fact that I was constipated during this period just compounded it. I was told that I would feel low but I had not realised how low that would be. It is do with your blood count reducing and is the time where your immune system is reduced which means avoiding contact with people (not that I felt like it) as you may pick up an infection (even a cold) which the body may not be able  to deal with!

After these really grotty days, I began to feel better as I had been told that I would. Quite a remarkable change in my mental and physical state. i.e wanting to do things again, only my daily afternoon nap, appetite increasing. Almost back to normal.

So having experienced these last 3 weeks, I can expect a similar pattern over the next 3 weeks.

Diabetes

I have been confirmed as fully type 2 diabetic. This is being dealt with by my GP. He initially thought it could be controlled by diet and lifestyle but with the cancer complications, he decided this was not really an option so, after consultation with my oncologist, he has put me on a small daily dose of Gliclazide. A small dose means half a tablet. Now these tablets are only about 5mm in diameter and have a score mark down the middle. The score mark is there to make sure that the tablet breaks in half cleanly. However sometimes this does not work properly and you have a shattered tablet and have to work out how much is half. So fun and games every two days at the tablet breaking ceremony.

Next report

Unless anything out of the ordinary happens, I expect the next update to be about March 10th after I 've had my next IV treatment. Some of you may notice that this is longer than 3 weeks. This is because we are away around the UK between the 24th Feb and the 6th March.  

As suggested at the last meeting, the tumour on my liver has grown. However, the tumour in my bowel has stayed the same size.

To treat the liver tumour, I will be having a different chemo as well as the pills. This is Oxaliplatin and is given intravenously. It takes two hours and my first dose is on Friday and then every 3 weeks after that. It will be into the arm or back of the hand so I will not need a Hickman or Central line into the chest.

The pills remain the same but work with the IV stuff so I start taking the pills on Saturday for two weeks and then have a week off.

The main side effect of the new drug is feeling the cold which is likely to create dysaestesia (known to most of us as pins and needles). It is likely also that I won't be able to have cold drinks as they will make the back of my throat uncomfortable and may cause a throat spasm.

Seeing the diabetes specialist on Monday so will report on that then. 

Saw the consultant this morning and he tells me that my recent blood tests indicate I am slightly jaundiced.

He thinks this may be the tumour on my liver interfering with the liver's blood cleaning process so he is sending me for a CT scan to see if the tumour is misbehaving.

This scan will be in the next couple of weeks before I go back to see him on 14th Jan. In the meantime he has stopped my chemo pills and will reassess the dosage when he has the results of the scan.

So hopefully in these couple of weeks with no chemo, I will be able to stay awake longer

After a rest from the chemo pills to give my feet time to recover, I have now started again with them on a reduced dosage. I am now on 4 pills in the morning and 4 in the evening instead of 5.

I am also having to take 3 vitamin B6 pills 3 times a day. B6 is a vitamin that helps skin cells grow so are helping my feet get better as well.

We've managed to have several weekends away in  Liverpool, Buckinghamshire (for my brother's birthday) and Croydon (visiting our son and his family) and thoroughly enjoyed them all.

I've also been diagnosed with borderline diabetes. This is nothing to do with the cancer but is something people of my age and lifestyle seem to get. Because it's borderline, I am currently controlling it by diet (basically no sugar). However, I have to have a 3 monthly check up and if it worsens, I may have to take pills for that so increasing my daily pill count to more than the 17 that I am currently taking.

In myself, I am still feeling fine and we are looking forward to Christmas (with our sons and families) and New Year (with our friends).

Next update when there is more news. 

I received some very encouraging news from my doc this morning as he told me that the chemo has worked and both tumours, the primary one in my bowel and the secondary one on my liver, have shrunk.

I still have the sore feet and he has taken me off the chemo for the next two weeks until they recover.

The most surprising news that he gave me in astonishment is that I have lost the stent in my bowel. Apparently I am his first patient to have done this. I'm also astonished as I had no idea I had lost it. How you can pass an inch wide and 4 inch long object without realising is beyond me - but I have somehow managed it.  

The last 3 weeks have been good. I still feel tired but the sore feet and the constipation have gone.

The sore feet have turned into flaky feet as all the dead skin drops off and the new skin begins to grow. The hoover has been in full time use cleaning up bits of my feet which drop off all over the house - and particularly in bed.

Saw the doc again today and the blood tests show that the growth of the tumour is not slowing as much as he would like it to. This will be checked out at my 12 weekly scan which is due in 2 weeks time. If this confirms that the growth is not slowing then I will be on an extra chemo drug in adition to the Capecitibane. This is likely to be administered intravenously. However, the decision will not be made on that until my next appointment on 31st October.

Let's hope the next 3 weeks are as good as the last 3. Next report on 31st October. 

The last 3 weeks has been  a story of sore feet and constipation. Both of these are well known side effects of the chemo drug that I am taking. The sore feet were so bad for a few days that I could hardly walk.

When I was told about the sore feet being a side effect, I wondered why so posed the question. Apparently the fastest growing cells in a normal human body are those on the soles of your feet, the palms of your hands, and the inside of your mouth. When you think about it, this makes perfect sense as these are the cells that are being worn away the quickest. The chemo drug I am taking is designed to attack fast growing cancerous cells but it has difficulty deciding between fast growing cancerous cells and fast growing normal cells so it has a go at both - hence the sore feet. I can probably expect sore hands and sore mouth as well over the next 3 weeks.

I saw the doc this morning and he has given me some more pills to try and counteract the sore feet effect. I have to take 3 of these 3 times a day so together with my 10 chemo pills and my daily vitamin pill, I am now on 20 a day.

When I had the constipation, I was given a mild laxative which did not work, then a stronger one with the threat of if that did not work the district nurse was comimg round to give me an enema. I'm not sure whether it was the threat of an enema or the stronger laxative that got me going

My body is standing up well to the treatment so I have been prescribed the full dose again for the next 3 weeks. In myself, I am feeling fine apart from the continual tiredness but if that is all I have to put up with, I will be well pleased. In fact Anne and I have spent the last few days in London visiting our son and his family so we're trying to do as many "normal" things as possible.

Next report in 3 weeks time on 10th October when I will have completed 9 weeks of the 12 week course of chemo.

I have seen the doctor this morning after the first 3 weeks of the chemo course - 2 weeks of taking tablets and then a week off.

During the time I was taking the pills I felt very tired but in the last week I've felt nearly normal. Touchwood, no other side effects.

The doc was pleased with my progress and told me that the markers in my blood indicated a slight slowdown in growth of the cancer which is what he would expect after just 3 weeks. He also told me that I could relax my diet slightly although to be sensible in the way I do it. He also told me that I must still continue to exercise which means at least a walk round the block each day.

Start the next 2 week session of pill taking tomorrow and back to see the doc in 3 weeks time. Will report again then.

Well, I'm several days into the chemo now and, so far, (fingers crossed) no side effects except for feeling a bit tired.  I now find myself needing a nap mid afternoon.

I had the bowel stent fitted last Thursday. This is basically an inch wide tube in the bowel which allows waste product to get past the tumour which could otherwise block the bowel. I cannot feel this inside me as, so the doctor informed me, there are no nerve endings on the inner wall of the bowel. Plenty of nerves in the rest of the bowel but none on the inner wall.

Because of the stent, this has meant a change of diet and this is the thing that is taking the most getting used to. I am now on a low fibre diet which basically means no fruit or veg, only white bread and nothing made with non-white flour. I can, though,eat any meat or fish and any dairy products and tinned fruit. Any drink is OK providing it does not have bits of fruit or veg in it. This is taking some time to adapt to.

I report back to the doctor on 29th August so that he can check how I am doing. 

Saw the chemo man today and he is going to treat my condition in two ways.

Firstly, a 12 week course of chemotherapy. This will be in tablet form and I will take two a day (one after breakfast and one after evening meal) for 2 weeks and then have a week off. This 2 weeks on and 1 week off will be repeated for 12 weeks

Secondly by control of the diet. I am being put in touch with a dietician.

They will take a scan at the beginning of the treatment and a scan at the end of the 12 weeks to see how I am doing and adjust the dose/mixture accordingly at the end of 12 weeks.

There is likely to be some side effects - the most probable one will be feeling really tired. The drug I am being treated with is Capecitabane and more about it and its side effects can be found here.

http://www.cancerbackup.org.uk/Treatments/Chemotherapy/Individualdrugs/Capecitabine

Without chemo, my life expectancy would be 6 months. With it, I can expect 2-4 years and because of my relatively young age (58) and reasonably good general health, probably a bit longer.

Saw the man today for the results of my scans and as I expected, the cancer has spread too far for them to be able to  operate.

This means I will be going on a course of chemotherapy. Exactly how this will work  we won’t know until next Wednesday when I go to see the chemo expert – a guy called Kim Last. He will then outline what I can expect.

It is also likely that, as they are not going to operate, they will put a stent into my bowel so that the waste product can get past the tumour and out of my body.

I have spoken to my contact at the hospital today who tells me that the results of my two recent scans will be discussed at an MDT meeting on Friday 18th July. MDT is multi disciplinary team and is all the experts getting together to make a decision.

I should hear this decision about what course of treatment I can look forward to on Friday afternoon or evening.

The next post will be to let you know what that decision is.

The dates for my two scans have now been confirmed. I have an MRI scan on my liver on Wednesday 9th July in York and a PET scan on my abdomen in Hull on Friday 11th July.

The results of these should be available on Tuesday 15th July when,.hopefully, I should hear what course of treatment I can look forward to.

Saw the specialist today who wants to do another scan on me to check if the cancer has spread. This is a PET scan and can only be done in Hull or Leeds as York does not have the necessary equipment.

It is a radio nuclear scan where some dye is injected into a vein and then the blood glows a different colour in any "dodgy" parts and shows if the cancer has spread. Once the surgeon has these reults he can decide which parts of me he is going to cut away.

The scan will be sometime during the next 10 days.  

This is Tony Kempster's blog in which I, or my wife Anne, will try to keep you up to date ...   more »