15 March 2010 - Appointment at QE Hospital

Deb walking along the Left Bank of the Seine during our long weekend in Paris

Visited QE on 15 March for blood tests and monthly appointment with oncologist. Saw Dr Sanghera. Blood test results were excellent (all within the normal range).

Chemotherapy

As discussed at last visit it was decided that Deb should stop taking the chemotherapy (temozolomide). Although we were expecting this it was still unsettling. Deb will no longer need to go to the Cancer Centre once a month and have blood tests. She will now only see Dr Sanghera once every 3 months after her MRI scan. She will no longer need to take her preventative antibiotic.

The stopping of chemotherapy seems such a big step. Isn't it this drug which has been holding the tumour in check all this time? I asked Dr Sanghera if this was good news or bad news. He said it is good news. A year ago, when the tumour looked as though it was progressing , things looked really bad. At that time Deb's prognosis was poor. But here we are a year later, Deb has done really well and is looking good. We should be positive. I still feel anxious. I couldn't get to sleep after the hospital visit. Dark thoughts about what the future holds.

Steroids

At the last visit Deb was on a dose of dexamethasone of 1 mg per day. Before we went to Paris she reduced to 0.5mg. This reduction caused her to have: 1) extreme fatigue and spend a lot of time in bed, 2) increased dizzy spells, 3) feeling of nausea for most of the day. She therefore went back up to 1mg and these symptoms largely disappeared. I read on the Internet that if you take dexamethasone for more than 2 weeks (Deb has been on it for nearly 2 years) it knocks out the body's own system for producing steroids. (The thyroid gland produces a natural steroid which is essential to ensure adequate activity levels in the body. 0.75 mg per day of dexamethasone is approximately equivalent to the level of steroid produced by the body.) To allow time for Deb's own glands to kick in it was agreed that she should try reducing her steroid dose more slowly. So she will reduce by 0.2mg per day every 10 days. We will monitor the position.

MRI scan of back

Dr Sanghera said he had seen the report on the scan of Deb's back and that everything was OK.

Next visit to QE is on 15 April for another MRI scan of Deb's head. We shall see Dr Sanghera the week after on the 26 April.

15 February 2010 - Appointment at QE Hospital

On 9 February Deb had her 8 MRI scan since completing her radiotherapy treatment. This was just under 2 months since her last scan on 14 December. The scan was originally arranged to look at Deb's back (the doctor had thought that Deb's back pain may be due to osteoporosis). When we got there we were told that they would also scan her brain. On the 15 February Deb had her blood test and we saw Dr Sanghera.

Scan result

The result was good. The grade IV part of the tumour was about the same size as at the last scan. We compared the latest scan with the scan from a year ago and the overall bulk of the tumour is definitely significantly reduced.

Chemotherapy

On the 9 Feb 2009, Dr Sanghera thought that Deb's tumour was starting to progress and her chemotherapy regime was changed. So Deb has been on continuous chemotherapy for exactly a year. (+ 4 months of monthly cycles). Dr Sanghera was concerned about the time that Deb has been taking the chemotherapy drug (temozolomide). Although Deb is tolerating the drug well, it will cause long term damage to the bone marrow and there will be a build up of other toxic effects. This may mean that Deb will not be able to take the drug later on when she really needs it. The control of the grade IV parts of the tumour and the reduction in overall size may not be due to the continuing action of the chemotherapy but could have been caused by the radiotherapy and the initial chemotherapy treatment. After a discussion it was agreed that Deb would continue with the chemotherapy for now but we will stop soon (Dr Sanghera does not want to go beyond 18 months with the treatment).

Steroids

Over the last month, Deb has reduced from 2mg per day to 1mg per day. She did have one or two headaches and has felt more dizzy but now seems to have settled down. With the agreement of the doctor she will now try to slowly reduce further to 0.5mg per day and maybe give them up completely.

Back scan

We did not get the results of the back scan. This will be looked at separately by a specialist in this area and a written report will be sent to us.

Flynn has gone - for good this time!

Bertie - on his own in Sutton Park






On 29 January, I had a phone call from the Dogs trust at Evesham (I had put Flynn on their waiting list) asking if I still wanted to rehome my dog. I was uncertain what to do and asked if I could have a few days to discuss it with the family. Over the weekend the dogs fought several times. Once when I was still in bed and Deb couldn't separate them. They both had blood on their coats. This made up our minds and Deb and I took Flynn to the Trust on 3 February. As we walked him down the long drive to the kennels he was jumping about without a care in the world. As we handed his lead over to the handler he was wagging his tail. As he was taken down to his kennel he looked back but still had no inkling he would not see us again. It felt so cruel but it was the right decision. Deb and I are happier, the cages are gone, we don't have to constantly close doors behind us or worry about what the dogs are doing. Bertie is happier; he gets all the attention, has the freedom of the house and doesn't have to worry about his ear being chewed off. And perhaps Flynn is happier. Perhaps. But I still feel I have let him down.

18 January 2010 - Appointment at QE Hospital

Sutton Park in the snow

Visited QE on 18th January for routine monthly appointment with oncologist. (Appointment was originally on 11th but was postponed for a week. Deb was therefore without chemotherapy for a week. When she queried this, she was told it did not matter if she missed a week! This sort of remark undermines your confidence in the treatment.) We saw Dr Petit again (Dr Sanghera's registrar). Dr Sanghera was on an 'induction course'. He's already been at the hospital for over a year and then has to go on a mandatory 3 week course to ensure he is fully informed of the hospital trust's policies.

Deb's blood test results were good and she was given another month's supply of chemotherapy.

Deb asked Dr Petit if she could further reduce her steroid dose. Dr Petit agreed that she could reduce to 1.5 mg (from 2 mg) for 2 weeks and if she felt OK could then reduce to 1.0 mg. If Deb starts to get any serious headaches she is to contact Fred or Claire and put the steroid dose back up. If this reduction is successful Deb may be referred to an endocrinologist to see if she can transfer from her current steroid (dexamethazone) to hydrocortisone. Hydrocortisone is not as effective as dexamethazone but is closer to the natural steroid produced by the body and may have less side effects.

Deb has been suffering from some acute back pain. The doctor was concerned this may be due to osteoporosis of bones in the spine and is to arrange for Deb to have an MRI scan of her back.

Also discussed severe gastric pain Deb gets from taking osteoporosis tablets. Deb had already discussed this with our GP said she should stop the treatment for a few weeks and has given her different medication to try and reduce the problem. Dr Petit said Deb should double the dose of her gastro-resistant medication (taken with the steroids) if the problem persists.

After seeing the doctor, we stayed at the hospital for a meeting of the West Midlands Brain Tumour Support group. This was our first meeting at the hospital and we did have a couple of new members turn up. Our guest speaker talked about laughter therapy. We had to stand in a circle and do various 'laughs'. This is supposed to make you feel better (I'd go along with that) and boost your immune system (a dubious claim if you ask me).

Flynn is back

Dogs in the park

Last time I wrote about Flynn, he was living a life of luxury with Brenda. That lasted about a week. Brenda found she was unable to look after him properly. She couldn't take him for walks and asked if we could take him back. On Flynn's return, the dogs fought even more. I couldn't even take them into the park without them attacking one another. Then, after about 2 weeks something changed. They settled down a bit. They still occasionally try to kill one another but in between life is nearly normal. Perhaps we will be able to keep both of them after all.

14 December 2009 - Appointment at QE Hospital

Christmas decorations made by Deb and me at our 'craft' session at St Giles Hospice - impressive eh?

On 13 December, Deb had her seventh MRI scan since her radiotherapy treatment. This was three months since her last scan on 17 September.

(Scan was carried out at 3:45 on a Sunday afternoon! - good to see the NHS is making full use of expensive equipment. Fred, the Macmillan nurse told me that the QE has the facility to carry out about 200 MRI scans per month but demand is now running at about 500 per month. We get high priority but it is still difficult to fit us in.)

We got the results at the QE on the following day. We did not see Dr Sanghera but his registrar Dr Petit. She was kind but was unfamiliar with Deb's history and was not as experienced in interpreting scans.

The scan result was good. The grade IV part of the tumour was approximately the same size as on the previous scan. The chemotherapy is still doing its work. This is now 11 months without significant progress of the tumour.

Deb's blood test results were also good and Deb continues with the chemotherapy.

For some reason Deb had not felt confidant about the results of this scan so we came out of the hospital very relieved.

Next scan in 3 months time.

MERRY CHRISTMAS TO ALL OF YOU OUT THERE. (Well the one or two who bother to read this)

11 December 2009 - New Kitchen is installed

Our new kitchen is completed

Well nearly. Still have to find homes for all the pots and pans, bottles and knives, brushes and cloths hidden in every room in the house. And decorate. And change the radiator. And change the light switch and one socket. And find out how to work the cooker. And fix the window sills. And....