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....

10 December 2009 - A new home for Flynn

Flynn packing his bags

We have found a new home for Flynn. Brenda, a friend of Deb's from the Sutton Cancer Centre, has taken him. I took him round to her house on Thursday. It was very sad but Brenda rang on Friday to say Flynn had slept on her bed, had taken over her place on the sofa and was enjoying the cordon bleu dog food she had bought him. Our house is now much calmer. The dog cages and muzzles have been put away. The walks in the park are not the same. Bertie stays by my side whereas Flynn was always more adventurous. Perhaps our paths will cross again one day.

HELP - NEW HOME WANTED FOR A GOOD DOG

Flynn, a good Jack Russell

When Bertie and Flynn reached puberty they started to fight with one another. Real fighting. To the death type fighting. We have tried an animal behaviourist - no good. Flynn has been neutered in an effort to establish him in a more submissive role. All to no avail.

Our only resort now is to re-home one of the dogs. We have decided that Flynn will be the one to go. We would like him to go to a good home. So before we take him to a Dog Trust Re-homing Centre we wondered if anyone knows anyone who would like a good dog. He is 11 months old and used to a family environment. He has been injected, wormed, chipped and neutered. He is warm and friendly (if a little yappy) and loves walks in the park. FREE to a good home!!!

16 November 2009 - Appointment at QE Hospital

Visit to QE for blood test and to see Dr Sanghera, Consultant Oncologist.

Blood tests were OK and another month's chemotherapy prescribed. Dr Sanghera asked how Deb had been and she mentioned that lately she had been feeling more breathless which she had attributed to putting on more weight. The doctor did an oxygen saturation test and found this was a little low (reading was 94, normal level about 97). He was concerned that the breathlessness and lower then expected oxygen levels may be due to a clot in the lung (blood clots are a possible side effect from the chemotherapy). As a precautionary measure the doctor thought that Deb should have a CT scan of the lungs to rule out the possibility of a clot in the lungs. Deb was admitted onto a ward at 12.00 but didn't have her scan until 5.30. It was too late to get the results that day and the hospital (as a precautionary measure) gave Deb a blood thinning agent and wanted to keep her in overnight. Deb remembered the last time she was in hospital overnight when she had come out the following day with Noro virus and decided she wanted to go home (She had to sign forms saying that she had discharged herself against medical advice). We returned the following day - the scan was fine, there was no clot. But because she had been given a blood thinning agent (as a precautionary measure) she had to have another blood test to make sure her blood was the right consistency before she could come home.

In brief - everything remains the same. Chemotherapy continues.

Deb will have a further MRI scan in about a month's time. Next consultant's appointment: 14 December.

Reduction in steroids to 2mg per day still going well. I think Deb is sleeping a bit better and is less 'jittery'.