7 September 2017 - Neurosciences Outpatients Department, QE Hospital

Saw Dr Sanghera, Consultant Clinical Oncologist.

Deb is having some respite from her chemotherapy treatment and her last treatment cycle finished on 29 July.

Today's visit followed Deb's MRI scan (No. 43) on Tuesday 22 August. The following matters were discussed:

1.     Great news!!! The tumours had remained the same size as at the last scan.So it appears the cancer has been stopped; at least for the time being. Deb will now stay off the chemo until there is any evidence of progression of the tumours.

2.     Dr Sanghera remains concerned about the effect of medication on Deb's brain. We compared the latest scan with the scan taken just after Deb's diagnosis (August 2008). You could see definite shrinkage of the brain including parts not affected by the tumour. I asked about the significance of the shrinkage but Dr Sanghera was unable to be specific as the brain would have shrunk naturally due to ageing. Deb will be referred to a Dr Shurman, a rehabilitation specialist, who will review her overall condition.

3.     On looking again at the 2008 scan both Deb and I were shocked at the size of the original tumour. (10cm by 8cm if I remember correctly). It seemed to fill half the head, squeezing the rest of the brain against the skull.

4.     Dr Sanghera reviewed Deb's current medication. He thought that she had been on the phenytoin (a drug to prevent seizures) for a long time and Deb has never had a fit. Deb had a blood test to measure current phenytoin levels prior to Dr Sanghera making a decision to gradually get Deb off the drug.

This was a good visit. We will see Dr Sanghera in 3 months time following another scan.

24 July 2017 - Cancer Centre, Old QEH, Birmingham

A short visit to the Cancer Centre this time. The Centre was quiet and there was no queuing  for the blood test or waiting to see the doctor. Deb's blood test results were OK and she started her 12th cycle of chemotherapy. After this cycle she will stop for a period. She is due to have another scan in August and we will see how things develop.

She has an appointment in August to see a physiotherapist who specialises in neurological issues and will see an audiologist in September re her balance problems.

Next visit will be to get the results of the August scan.

27 June 2017 - Cancer Centre, Old QEH, Birmingham

Deb on the quayside at the old harbour, La Rochelle

Deb has completed her 10th cycle of chemotherapy. Two more to go before she gets some respite. Over the last month her problems with balance, concentration have continued. We have been on two holidays this month; to La Rochelle and Stockholm. Both of these have involved some walking and occasionally Deb found this very difficult. In addition, Deb has now developed an intermittent tremor in her right hand. 

This time we saw Dr Sanghera and discussed the ongoing issues. He had said Deb's problems were not due to the tumours but had been caused by the effect of radiotherapy and other treatments on the brain. Deb's brain must be one of the most scanned in history. I asked Dr Sanghera if you could see on the scans any general changes to the brain. He said you could see some general shrinkage. 

Debs blood test results were good and she was prescribed her next cycle of Temozolomide. Next appointment in one months time.

30 May 2017 - Cancer centre, Old QEH, Birmingham

Deb shortly before her diagnosis in May 2008

Deb was diagnosed on 23 May 2008, so she has now lived with this tumour for 9 years. I cannot even begin to understand what this must do to you mentally. Your brain is you. The seat of all your thoughts and emotions. To have a tumour in there, always in there, always just waiting to grow and take over the very essence of you must be very frightening. And in an effort to stop the tumour you bombard your brain with very high levels of radiation and very toxic chemicals. Radiation and chemicals whose very job is to kill living cells within your brain. That must have an effect on you, the very thoughts and emotions that make up what you are.

OK, Deb has completed her 9th cycle of chemotherapy. For some time Deb has had a variety of symptoms which were low level and intermittent but lately have become more pronounced. These include: dizziness and she falls more often, when she walks she often has a tendency to shuffle rather than pick up her feet properly, she leans while walking and going down a slope will get faster and faster and be unable to stop herself, she lacks concentration and will often start something then leave it half way through to start something else, her handwriting is deteriorating. Deb has discussed these problems with our GP who says he believes they are tumour related (many are also symptoms of Parkinson's disease but he does not think Deb has this). Deb had sent a note to Claire (the Clinical Nurse Specialist) explaining her concerns. 

First we met Dr Sanghera's registrar who discussed the issues and did a variety of tests on Deb relating to balance and body strength. Deb had her blood tested and we then met Dr Sanghera who did more tests. One of these was Unterberger's stepping test (you hold your hands out in front of you, close your eyes and walk on the spot for a minute or two). Most people stay more or less where they are but Deb slowly rotated through more than 90 degrees without knowing it. This test measures the effectiveness of the vestibular system (in the ear) which gives us our sense of balance. Deb has therefore been referred to an audiologist for further testing. In Dr Sanghera's opinion the symptoms Deb is experiencing are not due to the tumours themselves but are a product of the radiation and chemotherapy treatments that Deb has had over the years. The cumulative effect of the treatments may have caused a general deterioration within the brain. We did discuss whether the current course of chemotherapy was causing the problems. It was felt that this was unlikely and it was agreed that treatment should continue. 

We return to the hospital in a months time.

2 May 2017 - Cancer Centre, Old QEH, Birmingham

Deb has now completed her 7th and 8th cycles of chemotherapy. There was no blog last month as I was away cycling in Mallorca when Deb visited the hospital. Deb had her MRI scan last week. (Scan was in a new privately run scanner located in a portacabin on the old QEH site. The new scanner has twice the power of the usual scanners - 3 Tesla - and is also used by Birmingham University for research). Deb was convinced that the tumours were doing something and approached this latest scan with some trepidation.

At this visit the Cancer centre was like the bad old days when we first started coming. Because of the Bank Holiday they had squeezed two days of clinics into one and the blood tests were taking a very long time. As a result we were at the hospital for two and a half hours. We saw Dr Sanghera who we hadn't seen for a few months. Deb needn't have worried everything was fine. The MRI result showed no change from the previous scan. The tumours were stable (that's what we need strong and stable tumours). Blood results were good and Deb was able to start on her new cycle of chemotherapy.

Next scan in 3 months time. Dr Sanghera did say that providing nothing changed Deb would have 12 cycles of the chemo and then she would then have  a rest for a while. So this current period of chemo is set to finish in August.

6 March 2017 - Cancer Centre, Old QEH, Birmingham

Deb has completed her 6th cycle of chemotherapy and had a MRI scan (her 41st - the radiographer said she had never met anyone who had had 41 scans before) last Wednesday.

Today we saw Dr Mead. This was a very positive meeting. Not just because of the results of the scan were good (when comparing the scan from 3 months ago with the scan taken last week it appeared that the tumour size was identical) but more because of Dr Mead's tone and attitude. She was confident that Deb's tumour was not of the normal type of aggressive glioblastoma but was more slow growing and  responding to treatment.The results of  Deb's blood tests were good. We discussed how Deb had been during the last cycle of chemotherapy (the usual sickness and tiredness during the week of chemotherapy but a rapid recovery afterwards) and it was agreed that the treatment would continue for a further 6 months.

So far everything seems to be progressing well. Deb will have her next scan in 3 months time.

6 February 2017 - Cancer Centre, Old QEH, Birmingham

Deb's 5th cycle of chemotherapy now complete. This time when taking the chemo she felt sicker and on one day was actually physically sick. She has also had some random symptoms which maybe related to the tumours or maybe not. These include sharp pains in one ear, weakness in her left leg and eczema on one arm.

We did not see a consultant today but Claire the Clinical Nurse Specialist. The results from Deb's blood test were good and she was prescribed her next course of chemotherapy.

We discussed why Deb's tumour was so slow growing compared to other glioblastomas. Tumours are named after the cell they developed from. Deb's tumour arose from a glial cell in the brain and is therefore called a glioma. Most gliomas have rapid growth, spread and recurrence but some are less aggressive. Apparently what is more important is not where the tumours first formed but what type of genetic mutation caused them to form. Deb may well have one of these lower grade gliomas and that is why she is doing so well.

Deb's next appointment will be in a month's time when she will have an MRI scan before seeing the consultant.

9 January 2017 - Cancer Centre, Old QEH, Birmingham

Debs last cycle (her fourth) of chemotherapy generally went OK . During the month she had one or two serious headaches, when she also felt sick and dizzy but for most of the time she has been well.

The meeting today was with Dr Mead, (Dr Sanghera's registrar who we last saw on the day we learnt that the tumour had returned.) To see the registrar is usually good news - it means your case is thought to be relatively straightforward -  and this time the visit was routine. We discussed Deb's headaches and Dr Mead said that if they got worse then Deb should contact Claire or Fred to arrange for an MRI scan to see what the tumour was doing. I asked if the report on Deb's scan from the Imaging Department had substantiated Dr Sanghera's initial findings from last month. Dr Mead confirmed that the report confirmed the tumour was stable and responding to treatment. Deb's blood results were good and Dr Mead prescribed another course of chemotherapy. Deb's dose of Temozolamide has increased slightly (from 365 to 370 mg per day); we presume because Deb has put on a bit of weight. We walked over to the outpatients pharmacy in the new QE and as we walked into the room Deb's name was called out.

I cannot emphasise enough how much cancer care has improved at the QE. 8 years ago all patients in a clinic were given the same appointment time and had to wait hours to see the consultant, the queues for blood tests were enormous and there was another one or two hour wait at the pharmacy to get your prescription. This waiting around has all gone. Today I took  a newspaper with me and never had a chance to even open it. There were only 2 patients in front of Deb to get blood tests, we saw the consultant within 10 minutes and our prescription was ready as we arrived at the pharmacy. The whole visit only took 3/4 quarters of an hour. The NHS is a great thing and Britain should be proud of it.

The next appointment will be in a month's time.