22 May 2018 - Ward 621, Out-patients Oncology/Haematology Unit, QE Hospital

Deb and Kate in Monmouth 

Visit to start Deb'as second cycle of the PCV chemotherapy. Yesterday we saw Dr Sanghera at the Cancer Centre. Deb had her blood analysed and the results were within the normal range. Since the last visit to the hospital Deb has been largely in good health. She has had some headaches and tiredness but on the whole she has been well and positive about life. She enjoyed our weekend in a cottage in Monmouth with the children and their partners and the meal out with the women in her family to celebrate her birthday. 

The procedure at the hospital with the chemotherapy was the same as with the first cycle. Turn up at 2 pm wait 2 hours, answer a lot of questions and start the chemo at 4. After picking up the the other parts of the chemotherapy from the pharmacy we got home about 6. As yet Deb has not been sick and all is going well.

The Chemotherapy Unit was as chaotic as at the last visit. I think the trouble is that it is not managed. If it is the manager is not on site. Nobody sets the tone and as a result it is set by the nurses. It is great for them but it seems to me the Unit is lax and not focused on its task. 

Deb has to take the second part of the chemo tonight and then 10 days of the third part, all in tablet form. She will have another scan in a about a month's time before seeing Dr Sanghera and starting the next cycle.

23 April 2018 - Cancer Centre, Old QE Hospital

From 10 to 20 April, Deb completed her first course of the PCV chemotherapy. This was not as bad as expected but she was still sick a few times and very tired. This visit we saw Dr Sanghera and Claire, CNS. It was a short meeting for Dr Sanghera to review how Deb had got on. He said that she should not have to suffer being sick on this treatment and should take more anti sickness medication next time. Next visit to the hospital is on May 21 to see Dr Sanghera before Deb starts her next course of chemo on the 22nd.

10 April 2018 - Ward 621, Out-patients Oncology/Haematology Unit, QE Hospital

Deb having her Vincristine chemotherapy 

Visit to start Deb's chemotherapy. We got to the hospital at 1.15 for a 1.30 appointment. OK we then waited an hour or so but that's fine; there were a lot of people having chemotherapy. Deb was then called in to the unit and is prepared by the nurse - lots of questions, hands warmed up and cannula inserted. We spoke about what happened yesterday and that Deb is expecting to leave the hospital with some antibiotics. This worried the nurse who wandered off to see Mark the registrar who was consulted yesterday. They now decide to take more bloods from Deb (which were the same as yesterday) and decide that Deb needs a chest x ray. So we have to go down to the ground floor imaging department and wait 45 minutes for an x ray (the results are fine). By the time we get back to the chemo unit it is 4.30 and chemo can start. 

2 things annoyed me about this visit:

1) I know they have to be cautious but the registrar made a decision based on the information he had yesterday. Nothing has changed but he now decides he needs a chest x ray. Why couldn't he just make a decision and stick by it. He did look about 21 and had a distinct lack of facial hair.

2) I expected the nurses to be more focused on what they were doing The bag containing Deb's chemotherapy had a notice on it saying 'Fatal if not taken intravenously'. Despite this the nurse wandered off, had chats to friends, went off to do other jobs. I know they do this all day and every day but these are dangerous drugs. They sent us home with two more lots of chemotherapy. The nurse was decidedly woolly as to when to take everything - anti-sickness, chemotherapy, antibiotics, laxatives, more anti sickness. Come on NHS these drugs are cytotoxic.

9 April 2018 - Ward 621 Out-patients Oncology/Haematology Unit, QE Hospital

View from 6th floor QE Hospital

The visit today was for Deb to have a 'new patient' assessment prior to starting chemotherapy. Over the past few weeks, well actually since the start of the year, Deb has not been very well. She has had a cough which keeps her awake at night, has been very tired (perhaps because of the not sleeping with the cough), weak and her balance has not been good. Last week we went to the GP's surgery 3 times because they were worried Deb had some sort of infection. The GP thought that Deb should not start her chemotherapy. However when I rang the hospital they said Deb should come in for the assessment and a decision would be made then as to whether chemo should start.

We were seen by a chemotherapy nurse Megan. She told Deb what the PCV treatment involved and the possible side effects (that took about half an hour and included risk of infection, anaemia, feeling sick, tiredness, hair loss etc etc.). She took blood from Deb which was then tested. The test results were ok. Throughout the meeting Deb was coughing. Megan went to consult a doctor as to whether Deb should start the chemo the next day. The doctor said she should but he would prescribe some antibiotics which Deb should take if her temperature went up above 38 or she showed any other signs of infection (diarrhoea, vomiting etc.) So the PCV chemotherapy starts tomorrow. Each cycle lasts 42 days and Deb has been booked in for 6 cycles. The dates are shown below:

Date	Start Time	Treatment
Mon 09 Apr 18	15:00	PCV attenuated (v6)
Tue 10 Apr 18	13:30	PCV attenuated (v6)
Tue 22 May 18	14:00	PCV attenuated (v6)
Tue 03 Jul 18	12:45	PCV attenuated (v6)
Tue 14 Aug 18	12:00	PCV attenuated (v6)
Tue 25 Sep 18	12:00	PCV attenuated (v6)
Tue 06 Nov 18	12:00	PCV attenuated (v6)

To put it mildly, Deb is not looking forward to this treatment. It is not helped by the fact that she already feels unwell even before anything has started. But hopefully after 9 months without any treatment, the chemo will do something to slow tumour growth.

26 March 2018 - Cancer Centre, Old QE Hospital

Deb and I celebrating our 35th Wedding Anniversary

Following Deb's decision not to have surgery, we had a meeting today with Dr Sanghera. The new CNS, Will was also present.

We briefly discussed Deb's decision not to have the operation. Dr Sanghera said that in his opinion we should still consider intervention. Because the Temozolomide chemotherapy had not proved as effective as he would have liked last time, Dr Sanghera suggested Deb should have PCV. This is a more aggressive chemotherapy consisting of 3 different chemotherapy drugs: procarbazine (P), lomustine (C - also known as CCNU) and vincristine (V) given on a 6 week cycle. The vincristine is given intraveneously at the hospital with the other 2 drugs are in tablet form. Deb has had PCV before in 2010/11 . The dose this time will be slightly lower. Deb will have 2 cycles and then have an MRI scan to monitor the effectiveness of the treatment. We will see Dr Sanghera again after the first cycle to see how everything is progressing. We wait for an appointment from the chemotherapy centre which is likely to be some time next week.

24 March 2018 - UPDATE

Deb has made her decision about surgery. She has decided NOT to have the operation to debaulk  the tumour. I agree with this decision - just look at the charts on the last post.

I telephoned the QE yesterday afternoon and told Claire, CNS Neurology, of Deb's decision. Today the hospital rang back to confirm that Deb had an appointment with Dr Sanghera in the Cancer Centre, the old QE at 10.30 Monday morning (26th). Will post again after that meeting.

20 March 2018 - Meeting with Mr Kay, Neurosurgeon, QE Hospital

Queen Elizabeth Hospital Outpatients Dept.

This was a very bleak meeting with Mr Kay, Neurosurgeon and Claire, CNS. Mr Kay started by asking Deb what she understood the current position to be. She responded by explaining that following the last meeting with Dr Sanghera, we were here to discuss surgery as an option for treatment.  Mr Kay went on to discuss the risks of surgery. As for the first operation the tumour is close to the ventricles (which contain cerebral fluid) and other important structures in the brain and therefore all of the tumour could not be removed. Mr Kay stressed that because this was a second operation the postoperative risks were higher and these may include problems with the wound healing, a build up of fluid and inflammation of the brain (encephalitis) and a real risk of Deb not being mobile and spending her last months in hospital. He also said that the operation would not improve Deb's current condition, it would give in his words 'local disease control'. by that I think he means by removing some of the active tumour it will slow it down and give you a bit more time.

Chart showing possible outcomes from operation

Mr Kay drew a chart like this showing the possible outcomes from the operation.

Blue line - best outcome - Deb's condition remains as now for a time before declining.

Yellow line - no operation - Deb's condition gradually declines with time but she has a longer relatively good quality of life.

Red line - possible outcome from operation - Deb has post op complications and declines rapidly. Her life expectancy may be the same but her quality of life is poorer. 

Mr Kay said the decision was Deb's. He could not advise what to do. This was a decision where the positive and negative factors were equally balanced and it was up to Deb. I said that this was an impossible decision for Deb to make. I wanted more understanding of the benefits and downsides to make a pragmatic rational decision. Mr Kay said this was not a technical decision. It depended more on the type of person you were. Did you want more intervention and take the risk of possible complications or would you rather take the relatively good life you have now and run with it for as long as you can.

I said our decision is coloured by what happened last time. Deb had the operation followed by chemotherapy and 8 years of good quality life later is still here. Mr Kay said that Deb's longevity was not because of the operation and showed us this chart which we have seen before.

% of people who have survived with GBM v. survival time in months

The graph shows that 60 months (5 years ) after diagnosis only 2% of people with GBM are still alive. This graph only goes up to 5 years, Deb is off the scale. The reason for that is unknown it is a combination of the type of GBM Deb has and the way it has responded to chemo/radiotherapy. The operation just debaulked the tumour and did not effect growth rates.

Claire said we should go away and make the decision about surgery in the next few days. They will of course implement whatever decision Deb takes. If Deb does not go ahead with surgery there is still radiotherapy and/or chemotherapy to be considered. 

Below is a copy of Claire's notes about the meeting:

Tomorrow is my 70th birthday. I am glad we cancelled the party, I don't think we would have been much fun. Sam and Kate are here for the weekend. We will have a family discussion and Deb will decide what she will do.