Update 5 - 1st February 2008

Hi

As you all know Liz had a biopsy taken form her cancer last week to try and ascertain the exact type of cancer, in order that the Oncologist could prescribe the most appropriate course of chemotherapy.

The results came back late on Tuesday. Liz’s GP telephoned at 7.0pm to request a meeting, but also outlined the findings. Cancer was confirmed, but the exact type was unclear, although it strongly pointed to Bowel Cancer.

He also confirmed that the specialists treating her at DCH wanted to have a Colonoscopy carried out to try and ascertain the site of the primary cancer. The Colonoscopy was to be organised as quickly as possible.

After seeing the GP on Wednesday morning he said he thought the Colonoscopy would not be until week commencing 4th Feb as Liz’s stomach needed to be ‘prepared’ by way of a diet before the investigation.

We heard nothing during the day, but I chased my hospital contacts to provide us with a date.

Thursday morning we heard from the hospital that the first available date was 12th Feb. At this point I blew my top, and told them that it was totally unacceptable, particularly after all the previous delays. We told them that if Dorchester Hospital was unable to do it any sooner, then they should try all the surrounding hospitals such as Poole, Yeovil, Exeter or Taunton and as a last resort the local Nuffield Hospital as a private patient.

Our GP was by now also putting pressure on the Consultant, as was Tim (number two son), who coincidentally was working in Roehampton Hospital at the time. Tim managed to get the Consultant to investigate the possibility of having it done privately at the local Nuffield Hospital, but being paid for by the NHS Trust.

Eventually after an hour or two the pressure from all sides won through, and the Colonoscopy was confirmed for Wednesday 6th Feb at 9.30 am. For practical (diet) reasons it could not be done any earlier. Liz is now on the special diet.

Late yesterday afternoon we had our first appointment with the Oncologist who was extremely pleasant, talked very slowly, and explained in detail the current situation and the way forward.

He explained that the cancer had spread from the primary site, and that it was in-operable. However, he was fairly confident that it was Bowel cancer which he could treat with Chemotherapy, but unfortunately he could not completely cure it i.e. it will come back. His plan was to hopefully get Liz into remission using 2 x 9 week courses of Chemotherapy. Another CT scan would be done around the time when the chemotherapy was started (as a benchmark), and then another one taken at 9 weeks to check on progress. If necessary the treatment could be modified depending on the results so far.

The consultant also explained that there could be three different outcomes to the Colonoscopy.

1. The colonoscopy failed or could not be completed due to technical reasons (each persons bowel is shaped differently and may have extreme bends in it)
2. The site of the primary cancer is located in the bowel which is what is expected (Cancer then classified as Bowel Cancer)
3. No primary source is detected (Cancer then classified & treated as Unknown)

In 1 & 3 the chemotherapy treatment will be less accurate because they do not know the exact source, which is actually quite a common occurrence. The success rate is not generally as good as if they know the source.

The consultant knows that we have asked for a second opinion from the Royal Marsden Hospital in London, and confirmed that under the circumstances he would do the same. We expect to hear from the RM with their appraisal next week.

The consultant also made the point that because the cancer had spread, had been there for a number of months, and was only growing slowly, there was no desperate urgency to start the chemotherapy, as the outcome would be the same. If we wanted to take further advice or get further opinions, then that was not a problem. However, he made the point that bowel cancer was very well understood, as was the treatment, and this had also been confirmed in a telephone discussion with the Royal Marsden. They confirmed that the treatment nationally was pretty universal, and that the RM rarely disagreed with the local hospitals’ diagnosis and treatment.

At the moment the plan going forward is as follows:

1. Special diet for next 5 days
2. Colonoscopy at 9.30am on Wednesday 6th
3. Appointment with Oncologist again at 4.00pm on Thursday 7th to discuss results of colonoscopy, and explain in more detail about the chemotherapy
4. Chemotherapy course to commence week-commencing 11th Feb
5. CT scan done as benchmark week commencing 11th Feb

In the meantime I am being given some training to allow me to give Liz an injection in her stomach, every day for at least the next 5 months. This is in place of Warfarin which in Liz’s case cannot be used with the chemotherapy. At the moment we are making a 20 mile round trip to the doctor’s surgery every morning to have the injection as it is too difficult for the district nurse to come to us each day, and it would also keep us housebound until they came. It would also mean that we could not go away for the weekend or for a holiday. So Liz is going to have to allow me to make a pin cushion out of her stomach (not easy as she hates needles, injections or blood at any time!)

So I now have a syringe and an orange to play with over the weekend!

Liz is obviously very depressed and concerned about what lies ahead, but is generally much happier now that she can focus on treatment rather than investigation. It is now almost two months since she first went to her GP with chest/cough symptoms. She has already endured more than most people do in a lifetime.

From now on we are taking it a day at a time, and will need to re-assess our future, however long that might be.

As always thanks for you kind words of support, offers of help, flowers, plants, chocolates and cards they really are appreciated by Liz (and me!)

More plants and chocolates have just arrived whilst I have been writing this! You are so very kind.

Next update at the end of next week when colonoscopy done and chemotherapy plan in place.

Bye for now

Dick & Liz