Sunday 28 September 2008


Thank you from Deb and Chris

The coffee morning was a great success. I think everyone enjoyed themselves and the event not only raised lots of money for Macmillan Cancer Support but also enabled old friends to meet and chat. Over 60 people came along. Donations are still trickling in and the total has risen past £750. With Gift Aid that will put the total raised to over £1000. Well done to all who came.

I found the occasion strangely moving. How can a room full of people, many of whom I hardly know, (Deb knows them all of course) all drinking coffee and eating cakes, get you so emotional? I think it was the feeling of good will and support from your friends family and neighbours. Everyone was there because they knew Deb and cared about her. It is the fashion to mock UK culture. But I am glad I live in a society which still makes health care available on the basis of need rather than on the basis of who can pay and where we still care enough about our neighbour to give support in a difficult time.

Thanks to you all

Deb and I now are off to Aldeburgh on the Suffolk coast for a few days. Rest and recuperation and Adnams beer and fish and chips.

Tuesday 23 September 2008

Tuesday 16 September 2008

15 September 2008 - End of combined radio/chemotherapy treatment


Deb's radiotherapy mask and empty bottles of the chemotherapy drug







6 weeks of combined radio/chemotherapy now complete. That's the end of the combined treatment: 30 fractions of radiotherapy - 40 doses of chemotherapy.







We knew the affects of the radiotherapy were cumulative and Deb continues to feel very dizzy and tired. Her skin has also changed colour in places and she has suffered from rashes where her clothes make contact with her skin. Her hair has now started to seriously recede and she is wearing a headscarf when she goes out. We have also had a couple of days (well nights really) when we both have been a bit low. Most articles on glioblastomas mention life expectancy and this news is not good. We expect to be at the top end of any frequency distribution; for all the reasons we know about - Deb's age, fitness, lack of symptoms before diagnosis, positive attitude - and modern drugs do work wonders. Even so; one gets frightened at times. There is a scene in Ghostbusters where they go into an apartment that is haunted and open a fridge door in the kitchen. The fridge in fact provides a gateway to Hell and instead of seeing milk and cheese there is a view of terrifying ghouls and monsters. Our life can be like that - an innocuous remark or thought can open the fridge door and send you spiralling into panic. Deb is still keeping off the sleeping pills and has developed some sort of sleeping routine. We now go to bed about midnight and Deb will wake up about 5. It still doesn't seem enough to me but Deb seems to have got used to it.



On Friday 12 September, Deb had her sixth and final (at least for this part of the treatment)blood test. The results were again OK. Throughout the radiotherapy Deb's bloods have remained relatively normal.



On Monday 15 September Deb had her final review with Dr Chan. We discussed:



  • Blood test results.

  • Dizziness: Because Deb has continued to feel dizzy, the radiotherapists arranged for her to have her blood pressure taken. Apparently the radiation can effect the blood vessels in the brain causing the walls to become weakened, this can lead to blood rapidly leaving the head when you stand up causing lack of glucose in the brain and dizziness. When measured Deb's blood pressure was high (something like 175/90). The consensus at the review was that this was probably treatment related. During the review they tested Deb's blood pressure again; once when she was lying down and then again immediately after she had got up. This was fine. Not a lot of difference between the readings and at the top end of the normal range. We will check her BP ourselves over the next few weeks just to make sure things are OK. If top figure greater than 160 we are to let Fred know. If bottom figure consistently higher than 90 contact GP. The steroids can also effect sugar levels in the blood (diabetes is another side effect) so we will get our GP to check this. The dizziness concerns me. One of the original symptoms of the tumour was dizziness; how can we be sure this is not the tumour returning? Clare (the Macmillan Nurse) said that the effects of the radiotherapy are cumulative; it will carry on having an effect for some weeks after the treatment has finished. It will take about 6 weeks to get over it. If the dizziness persists and or gets worse we will contact the hospital. They will arrange for a scan. They would not be looking specifically at the tumour but to see if anything else had happened in the brain (stroke etc) - if a problem they can give medication to help.

  • Steroids; because of dizziness, we increased dose from 4 to 6 mg per day. Dr Chan advised we should reduce back to 4. Deb will continue at this level until her chemotherapy cycles start in 4 weeks time.

Next appointment made for 13 October. On that day Deb will have a blood test and then see the consultant. If results of blood test are OK then we will be given a prescription for 5 days of the chemotherapy drugs. The dose during the monotherapy will be higher than the combined therapy - it is likely to be something like 200mg (combined therapy dose was 135mg). Dosage is worked out on surface area of the body (which is why they needed to know Deb's height and weight before prescribing).


After the review Deb and I had a long talk with Fred Berki. I had a number of questions (10) to ask and as the doctor had to attend a meeting Fred agreed to answer them. It was good to talk to Fred. I felt reassured. Most of what we talked about I have already covered but two of his answers are given below:


Q1 What will be the procedure we follow over the 6 cycles of chemotherapy?

A1 The first cycle will start on 13 October. Before each cycle Deb will have a blood test and see the doctor who will make a decision as to whether the chemotherapy can proceed. If the blood test results are poor we may delay the onset of the chemotherapy by a week or so until they improve. If blood tests are OK you will be given a prescription for that months drugs. The trust has given funding for the temozolomide for 6 months. If at the end of those 6 months Deb is OK then a further application for funding will be made to allow Deb to continue to take the drug. She may well be on the monthly cycle course of chemotherapy treatment indefinitely.


Q2 When will Deb have another scan? My understanding is that the 'hot spots' seen in the earlier scans were due to increased blood flow in the area of the active part of the tumour. If the radiotherapy has 'killed' the tumour cells then the 'hot spots' will not be there.


A2 Nobody knows why but the radiotherapy actually makes the tumour look worse. If we scanned now it would actually look as though the tumour size had increased, even though this is not the case.The effect of the RT continues after the cessation of treatment for a period of about 6 weeks. The hospital will take a scan in 6 - 8 weeks time. This will then be used as a baseline for further scans to detect any changes in the tumour.


On Friday 12 September, Deb and I attended the inaugural meeting of the West Midlands Brain Cancer Support Group which took place in Birmingham Central Library. The group was set up by Ann Atkins whose daughter Iona aged 6 has a brain tumour and Jean Tomlinson, a brain tumour patient. Brain Tumour UK, a charity provided some help in getting the group off the ground and Macmillan provided a facilitator who led the discussion. We agreed who the group was for, what we wanted from it, some of the main tasks and who was going to do it. (Deb volunteered to help out with the organisation). It was good to talk to the other brain tumour patients and carers (about 12 people attended). Harry and Nicky Tempest were there. Harry was diagnosed with a GBM tumour like Deb in November 2006. He has been on temozolomide ever since and has now had about 18 cycles. The next meeting is on 17 October.


So we now start a period without radio/chemotherapy. Hopefully Deb will improve as the effects of the treatment wear off. We have booked a cottage for a holiday, 29 September - 3 October in Aldeburgh, Suffolk. I have already begun to think about what books I will take.


Love to you all Chris





Tuesday 9 September 2008

8 September 2008 - End of fifth week of combined radio/chemotherapy treatment






Deb on 7 September after 5 weeks of treatment - taking her 135mg of temozolomide



5 weeks of combined radio/chemotherapy now complete.





Deb now very tired from radiotherapy. Sleeping pills were just not working so Deb stopped taking them. Deb now sleeps for about the same time each night - 4 or 5 hours - but without the pills wakes up feeling much more alert. She has decided not to take the pills for a few nights and see how things go. Hopefully she will get into a good natural sleep pattern.

Friday 5 September, Deb had her fifth blood test and the results were again good. The red blood cell count was slightly down but not enough to cause concern.

Deb had her weekly review with Dr Chan on Monday 8 September. I was again unable to attend. ( I was giving a presentation at the HSE's Offshore Divisional Conference on the findings from the explosion at BP Texas City oil refinery and the implications for the UK offshore oil industry). Thanks once again to Kate Waltho who took Deb to the hospital and had to wait several hours until the doctor could be seen.

Next Monday 15 September will be Deb's last fraction of radiotherapy treatment. We will see the doctor for the final review. At that time we will be given a date in four weeks when Deb will need to return to the hospital for a further blood test and if that is clear we will start the first cycle of the monotherapy ie just chemotherapy on its own.

Deb had arranged through the occupational therapy department at Slade Road that she would have massage and acupuncture sessions on Friday 5 September at 2 pm. At 1.30 the physiotherapist who was going to give the treatment rung Deb at home to say that she had read her notes and did not think it was suitable for Deb's type of tumour. Deb brought this up with the consultant on Monday. He could not understand why massage or acupuncture could not be given. Fred Berki is going to contact the OH department to discuss the issue.

It is a relief to be heading into the final week. The guidance mentions that patients often feel a bit depressed when radiotherapy finishes. They no longer have a sense of attacking the tumour; of actually doing something to fight the disease. Deb may well feel the same. If she is well enough we will try and get away for a week. A short break by the seaside would be nice.

Monday 1 September 2008

1 September 2008 - End of fourth week of combined radio/chemotherapy treatment


Deb (with Carol and Steve) on 3 September after 4 weeks of treatment

4 weeks of combined radio/chemotherapy treatment now complete.

No real change from last week. Deb continues to lose her hair and to feel tired. Although we did manage a short walk in Sutton Park on Saturday.

The new sleeping pills prescribed by Dr Garbett last week are not working so well. (Deb only got a couple of hours sleep last night). We will contact the doctor again and meanwhile revert back to the Zoplicone.

On Friday 29 August Deb had her fourth blood test. The white blood cell count was slightly raised and the phlebotomist suggested Deb speak to her doctor about it. After speaking to Fred Berki we again went to see Dr Garbett on Friday evening. He was not concerned with the blood test results but gave Deb some penicillin as a precautionary measure. He also suggested taking all of the steroids in the morning to try and improve the sleeping.

Deb had her weekly review with the consultant at the QEH today. I was unable to be present (I had to travel up to Flint in North Wales to attend a Speed Awareness Course - the result of being caught on a speed camera in Northrop on the 22 May doing 36 mph in a 30 mph area. I found the course very worthwhile. Did you know that if you hit someone at 20 mph they have a 5% chance of being killed, at 30 mph its a 45% chance, at 40 mph its an 80% chance? In other words a small change in speed can have a dramatic effect on the outcome.)

Many thanks to Kate Waltho who took Deb to the hospital. And all the other friends and family who have helped out over previous weeks:-

06/08/08 - Kate Eaton
13/08/08 - Cherry Thomas
15/08/08 - Liz Smith
18/08/08 - Andy Hams (I still went but Andy did give moral support)
21/08/08 - Cherry Thomas
28/08/08 - Jacqui Talbot
29/08/08 - Liz Smith

At the review Deb saw Dr Chan. It appears we are now his patient rather than under Professor Jones. Although there was another long wait, Deb said the meeting was very relaxed and not rushed like previous times. (Must have been because I wasn't there).
Dr Chan said:
1) The blood test results were fine and he did not know why our GP had but us on the penicillin. He said Deb looked really well. He was pleased that she still had a healthy appetite, was not sick and was keeping positive.
2) Deb could now reduce her steroids from 6mg per day to 4mg per day. Deb's face was swollen today and the radiotherapy mask was tight and had left clear imprints on her skin. He hopes the reduction in steroids will reduce the swelling and also help with the sleep.
3) At the end of the radiotherapy Deb would have a four week break from treatment. During this time we should do normal things. Take it easy and rest.

Deb continues to be in good spirits. Only two weeks to go!!