day 3

Those damned hiccoughs continue. Thanks for the suggestions.

Rang the chemo unit and they said it wasn't usual. They suggested we got some chlorpromazine from the GP. This is a drug which can be taken as and when required up to a maximum of 3 per day. Only problem is that they make you feel dozy(well more so than normal in my case). On no account are they to be taken before driving which may or may not clip my wings with the Radio.

The dietitian rang as well. To be fair to the NHS we have been impressed that when someone says on the Unit they will follow something up they usually do. Anyway the message was clear. At this stage I am not to worry about losing weight. So all the things they tell you to avoid are on the agenda. Fancy me having to eat things like custard and rice pudding for medicinal purposes. I am due to go to the chemo unit tomorrow as a representative of Angel Radio to attend the opening of a new garden. The Dietitian will leave me some stuff to bring home.

So I trundle along to my GP Dr. Hudson who is a very nice man. He is a GP who seems genuinely interested in you the patient. He underlined the points made by the Dietitian. Milk Shakes and full cream milk are also on the recommended list. I was told I would need to keep my strength up for the operation.

Other changes include a warning that the drugs weaken the blood clotting mechanism. Having a heavy beard and a sensitive skin means I do cut myself a lot whilst shaving so we have invested in an electric shaver which will hopefully do the trick.

On a positive note I did my show today which involved me driving for the first time since Monday. My interviewee was a New Zealander called Paul McAthee who runs a tree climbing activity here on the Island. Details can be got by either entering http://www.goodleaf.co.uk/ or put tree climbing in your search engine. Anybody coming to the Island with a family might like to think about this as an activity. Fortunately the dreaded hiccs didn't start until after the interview but I had a dodgy 20 minutes fortunately with plenty of music to play.

Finally for now I must record how wonderful Ev is. She is looking after the shopping, cooking meals making sure I take the right pills at the right time. More than that however she is providing huge emotional support without which I really don't know what I should do.

Onward and upward.

Day 2

Wednesday 29 April

First of all a correction. On first blog I said Joya was a Macmillan Nurse. She is in fact an UpperGi(gastric intestinal) Nurse who is paid for by the Macmillan Trust.

Today was the first full day with all the pill taking. Main problem has been the hiccoughs which I have had virtually all day. The usual cures i.e. water, boiled sweets, holding breath is not working. If anyone has ideas about this I'll be grateful for the comments(so will Ev).

I did some work on the keyboard this morning. I had been warned against picking up things that were cold. This means I can't get stuff out of the fridge. What I had forgotten was that first thing in the morning the keys on the keyboard would be cold as well. I got this strange tingling feeling in both hands. Once we put the central heating on it was okay.

Ev went to see some friends but dropped me off at the Hospital Radio first. The drill with the show which lasts an hour is to time the music you have chosen. A rough rule of thumb is to select 14 tracks for the hour. However this week I have several longer tracks so I can only play 13 of them. Artists this week include Nina Simone, Bruce Springsteen, Enya, Tom Jones and Vic Damone. The programme that follows mine is pre recorded but it is automatically started by the computer which means I have what is called in the jargon a clock finish. All went okay apart from the wretched hiccs. If I am still doing this in the morning I shall ring the chemo unit and ask for advice.

We went back to Andreas for tea. It was one of her specialities Pasta with bacon and sauce known in the family as bacon splat. Just finished watching Man United/Arsenal a game so riveting I nodded off during the second half.

Got another nice card today this time from Phillip and Julie. We carry on. Only another 2 months to go. Off to Angel Radio tomorrow when guest will be a tree climber from New Zealand.

the treatment part 1

One thing you do learn very quickly is that there is an awful lot of hanging about.

We arrived at the Chemo Suite at 930 and other than an ECT nothing happened until nearer Lunchtime. It was a very busy day and we were told that Pharmacy could only do one lot of chemo at a time and that it had to be done in sterile conditions.

Anyway they opened up with some solution to flush the system and keep the vein open. The first time it missed but second was okay. I then had a red fluid pumped into me. They warned me as a result I would be peeing red for a period of a day or so.

The worst part though was a chemo fed into me by drip. I had to keep a heat pad on the arm. I had a slight burning sensation on the arm.

We were given a variety of pills some of which are to counteract unpleasant side effects such as sickness, soreness of the mouth and the runs, plus constipation(I know the two are incompatible). Thanks to Ev the correct doses are sorted.

Leaving hospital I was told I had to rap up like it was winter. With the temperature outside at 9 degrees I had to have a coat, hat and scarf. I looked like someone in mufti.

Got home. Lovely card from Ju, Jack and Lucy to add to the collection. Meal eaten, pills taken and feeling not bad thus far. Tomorrow I am scheduled to do hospital radio show. That will be the first test.

The word cancer

Hello

I've always held off having my own blog not least because I have never thought my life interesting enough to warrant it. Yes I do have some opinions on a variety of topics but then so have lots of others and I kid myself if I think my thoughts are more important than anyone else's.

What has changed is the discovery of a malignant tumour in my oesphogus. On 28 April I begin chemotherapy a not very pleasant thought but I have been tremendously heartened by the number of messages of support from all sorts of people. That is very humbling so a big thank you to you all. So this is intended to give you an idea of how treatment is progressing as well as some observations on how the NHS looks from the point of view of a patient.

To go back to the start of all this, whilst away in New Zealand I noticed I was having difficulty not so much in swallowing as digesting food. I started losing my apetite and it became apparent weight. Not that the latter was too much of a difficulty since my 5 feet 8 inch frame weighed in at 17 Stone(I'm down to 15/7 since you ask). Thus I was persuaded by wiser voices(alright Ev) to go to the Doctor.

Dr. Legg was very business like and said my case would be classified as urgent under NHS target rules. This was on Thursday 12 February. Sure enough I got a call from the Gastroscopy Department asking me to come in on 16 February. Unfortunately even with a sedation drug they couldn't do the test as apparently I fought with them trying to stop a tube being stuck down my throat.

Now at this point dear reader you would have thought a case referred to the Hospital as a priority would initially go to a person to monitor progress but no. Gastroscopy had achieved their target time of dealing within 3 weeks of a referral. So they sent the papers back to the GP Surgery. The fact that I had no idea what was wrong with me didn't really count. Nothing daunted the surgery referred me to x Ray for a Barium Swallow. This I had on 11 March.

The swallow showed up a bulge and some liquid which the Doctor told me could be an inflammation or it could be something a lot worse. He said I would need a Gastroscopy to determine what it was. It would be referred back to my GP. Yes the x Ray people had achieved their target.

It was at this point that I decided to rebel. Here I was 6 weeks on with the Hospital meeting their targets and I was no nearer finding out what was wrong. Thanks to the persistance of Polly the Health Centre Manager and our GP Dr. Hudson we got an appointment to see a Consultant on 18 March. He clearly suspected something was wrong and arranged for me to be given a Gastroscopy under General Anasthetic a week later.

This was done and it was confirmed I had a tumour. At the same time I had a Biopsy. The following day I had a CT Scan and a week later(1 April) I was referred to the Oncology Department at Southampton. We were also introduced to Joya who is a MacMillan Nurse whose job is to co ordinate things between the Island and Southampton. Unfortunately she was due to go on leave. Her opposite number in Southampton rang a week later to tell me the plan for me and indicated I would need to come to the town for a Pet Scan. Due to Easter I couldn't get this done until 17 April.

On 20 April got a call from the Hospital saying where are you? An appointment had been made for us to see the Oncologist at 2 PM. We had been sent a letter. That letter didn't turn up at the house until 22 April. We went straight to the Hospital on the Monday and met Dr. Caves who guided us through the process. We noted that under targets treatment has to start within 4 weeks of referral. Referral would be 1 April and treatment is to start on 28 April i.e. just within the time limit. The final piece of the jigsaw came when we were told that the Pet Scan showed no additional cancer cells had ben found.

From all of this you will gather that waiting and being referred hither and yon has proved to be very stressful. The key for us was that when the initial gastroscopy didn't work someone at the Hospital should have been co ordinating what was going on. In common with many other people I have found that once you get to the right folk in the right place you are okay, but the trouble is getting there.

So here we are as I write this on 27 April evening waiting for the chemotherapy to start at 930AM tomorrow. Today has been an education day. We were very impressed with the layout of the chemotherapy unit at St. Mary's. It's all easy chairs, bright colours etc. They also welcome spouses, relatives etc. to come along. What will happen is that I shall be given 2 drugs introvenously one after the other in a process that will take roughly 3 to 4 hours. I shall then be given a third drug which is in tablet form to be taken twice a day for 2 weeks. I then have a week off, then back to the hospital to repeat the process, then another 2 weeks of tablets, then a week off and then back again for a third cycle. All being well that process will finish at the end of June. I would then have another scan to see if the tumour has reduced. Having said that we were given a list of conditions which if any applied I would have to stop taking the tablets and that would delay the finish of the course.

Once the Chemo is finished and if tests are okay I shall have an operation. We are due to visit the Consultant in Southampton on 13 May to find out what is involved in that.

Thus far I have tried to be as positive as I can. My attitude has been and is one of this is curable unless and until somebody tells me it isn't.

Part of the idea of this blog is to say thank you to everyone for their support and partly to record how the process goes.

Thank you for your attention thus far.