20 August 2018 - Cancer Centre, Old QE Hospital

Deb in her wheelchair on Brighton seafront

Visit to Cancer Centre for a meeting with Dr Sanghera. Also present Dr Allos (registrar) and Fred Berki (CNS).

Dr Sanghera explained that the latest scan results indicate that the chemotherapy is not proving very effective in stopping tumour growth. In addition the chemo was affecting Deb's blood cell production and in particular her platelet count was very low (normal range is 150 to 400. Deb's count today was 47. Below 30 action has to be taken to improve the count, usually by a blood transfusion.). Dr Sanghera therefore recommended that chemotherapy was stopped. 

He said we had various options: 

1) Do nothing and have another scan in one month's time. 

2) Have a second course of radiotherapy. This would be 20 sessions over 4 weeks at lower dose than  Deb's original radiotherapy. The first course of radiotherapy was given at the maximum dose it is thought the brain can tolerate and it is not common to give a second treatment. Dr S is recommending the treatment because it is 10 years since Deb was first treated, he thought she could tolerate the treatment and she would benefit from it.

The side effects from radiation to the head could include: hair loss in the area of the head that is being treated. tiredness, worsening of the brain tumour symptoms before they improve, sickness. There is also a risk of cognitive impairment. With a second treatment the risk of side effects is increased.

3) He could go back to Mr Kay and discuss surgery again.

He gave Deb a few days to go away and think about what she wanted to do and we are due to return to the hospital on Thursday 23 August. At that time Deb will also have a further blood test to see if the platelet count has improved. 

Deb was prescribed steroids (dexamethazone) at the last visit. In the time she has been taking them she has markedly improved. Her movement and posture has been better, her mental capacity and alertness has improved, she has slept less and ate more. Dr Sanghera explained this was a short term 'bounce' in improvement and as the tumour progressed higher doses of steroid would be required to keep the swelling around the tumour in check. In the mean time Deb will continue with the steroids although at a reduced dose (2mg a day instead of 4mg).

Deb has already decided she will proceed with the radiotherapy.

13 August 2018 - Cancer Centre, Old QE Hospital

Deb had her latest MRI scan (her 47th) on 21 July 2018. This scan was only 6 weeks after the previous scan. A shorter time period was decided upon to allow close monitoring of tumour growth. At the hospital we saw Dr Beshar Allos, registrar to Dr Sanghera who was on holiday.

Screen shots of Deb's scans are shown below. The MRI takes horizontal slices through the brain. The images are then shown reversed on the screen . So although Deb's tumour is in her RHS frontal lobe, it is shown on the left in the scans. In all cases the scan on the right of the picture is from 18 Feb 2018 and the latest scan (21 July) is on the left.

Photo1: Actual screen shot showing tumour growth. The white areas on the top LHS show where the tumour is actually growing.

Photo 2: Screen shot showing growth. I have marked where I think the tumour is. I may have got this wrong - a lot of the tumour is darker and not actually progressing at this time. But you can see growth over the last 6 months.

Photo 3: This is a screen shot of a different scan showing swelling around the tumour.

Photo 4: I have marked where I think the actual swelling is (fluid produced by the brain's reaction to the tumour). Again you can see that the amount of swelling has increased.

Dr Allos said that the radiologist's report on the latest scan indicated that there had been further tumour growth. This was less marked than the growth that had happened between the previous two scans. He said the changes were subtle and small and he said it was a difficult to decide whether to continue with the chemotherapy or change to another therapy (ie radiotherapy.).  Dr Allos thought that the decision as to how we should proceed should best be made by Dr Sanghera and suggested we did nothing for a week and returned next Monday when  Dr Sanghera would be back. We therefore made arrangements to return on 20 August at 12.50.

We discussed how Deb had been over the past couple of months. I read from my list. I thought there had been significant deterioration. In particular: Deb had more difficulty in walking; she now always used a stick. We have borrowed a wheelchair and use this for any distance over about 50 yards. She slumps to her left when sitting and this is more pronounced. Often she has trouble getting up and down stairs. Her writing is often illegible and she has had periods when she is not aware of what is going on. She has difficulty with some simple tasks. She sleeps a lot more etc etc.

Dr Allos thought these symptoms may be a result of the increased swelling in the brain caused by the tumour. Because the brain is encased within the skull any swelling will squeeze the brain within the cranium and could cause a variety of symptoms. He has put Deb back onto steroids (dexamethazone, 4mg per day) to see if this reduces the swelling and improves her condition.

2 July 2018 - Cancer Centre, Old QE Hospital

Deb having coffee at the Oasis Beach cafe, Weymouth, June 2018

On 21 June, Deb had another MRI scan (her 46th) to monitor what was happening with the tumour. The results of this scan were important as Deb has now completed two cycles of chemo and the scan would measure the effectiveness of the PCV chemotherapy regime. The visit today to the Cancer Centre was to get the results of this scan and also for Deb to have more blood tests before starting her 3rd cycle of chemo.

We saw Dr Allos, a doctor we have not seen before and briefly Dr Sanghera. We discussed how Deb had been during the last cycle of chemo. Her problems included severe constipation (this time they have given Deb some powerful laxatives to combat this), the deterioration in her balance and walking and her general muscle weakness.

We also discussed the scan. The radiologists report indicated that there had been some tumour growth. However Dr Sanghera and Dr Allos were of the opinion that if there were changes they were very subtle and growth is very slow. We looked at the scan and compared it with the scan 3 months ago. On some of the 'slices' the tumour did appear slightly larger but on others it seemed not to have changed. The decision was to continue with the PCV and to have another scan after 6 weeks (that's about the beginning of August). If that scan still shows tumour progression it will indicate that the chemo is not very effective and other treatment options will have to be considered - most likely more radiotherapy, 

I liked Dr Allos. He spoke simply and directly and answered all questions. Deb's blood tests results were ok and tomorrow we visit the chemotherapy unit  so she can start her third cycle of PCV.

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.