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'.

13 November 2009 - Getting up to date

Our cottage at North Huish, Devon

Another fine day on the beach at Burgh Island, Devon

I know, I know. I haven't posted a blog for a couple of months. Its our new kitchen - its taken over my life. Do we need a separate oven and hob? What type of sink? What are the disadvantages of solid wood worktops? Where do I source the fridge/freezer? Its never ending. But it is all coming together and next week it will be fitted - anyway that's the plan

In brief, to bring you up to date:

1. 2-9 October - Holiday in a cottage at Horth Huish, Devon. (Awful weather. Cottage good. Overall 6.5 out of 10)

2. 12-17 October - Wall between kitchen and dining room knocked down, downstairs loo extended to form utility room - all preparation for the new kitchen.

3. 19 October - Deb's monthly trip to QE Hospital to have blood tested and see consultant. Saw Dr J Sheriff, Senior Registrar not Dr Sanghera. It was agreed that Deb could try again to reduce steroids from dose of 3 mg per day to 2 mg. This has proved a success. Deb had 2 weeks of alternating days of 2 and 3 mg and then moved permanently onto 2 mg. She has not had any severe headaches or other symptoms as with previous reductions in steroid levels. If she continues to be OK on this dose she may try for a further reduction in the new year. Blood test results were good and Deb is prescribed chemotherapy and preventative antibiotics for a further month.

4. 26 October - Further meeting with Dr Mheera Shah, Psychologist. Most of her patients have had cancer and are recovering. So they have a goal, an end point. For instance a woman with breast cancer may have had her breast removed and Dr Shah would work with her to get her to accept this and feel good about her body again. With Deb it is different. She is not going to get better. This disease is permanent. So all our chats with Mheera are about strategies to make life a bit better. Still we both come out feeling it has been a useful experience, so it must be doing some good.

5. 2 November - Took over an allotment with Patrick my friend down the road. Have started to dig it over. Had our first harvest -potatoes left by the previous owner. Now looking for about 4 tonnes of good manure.

6. 10 November - In a bid to stop the dogs killing one another, took Flynn to the vet's to be castrated. Afterwards, he (can I still call him 'he'?) looked forlorn and sorry for himself. A red sore looking empty sack where his balls used to be. Up to date (one week later) this has not worked. Dogs are still at each others throats.

7. 11-12 November - Visited Sam in Scarborough. As part of his degree course he had designed and installed an installation in Scarborough Museum. A touch screen enabled you to access information on various exhibits - charms used in witchcraft. He wrote the software, added the pictures and sounds. Saw Sam's lecturer who was impressed with what he had achieved.

26 September 2009 - Macmillan Coffee Morning

Another great effort at our coffee morning to raise money fro Macmillan Cancer Support. Not quite as many people as last year but we still raised a lot of money for a very good cause.

Thank you everyone.

21 September 2009 - Appointment at QE Hospital

Deb had her sixth MRI scan since the radiotherapy treatment on 17 September. Visit to QE on the 21 was to discuss the results of the scan with Dr Sanghera. Sam and Kate both came to the hospital with us.

MRI Scan

This was more good news. The grade iv part of the tumour was still stable and the total bulk of the tumour again appeared to be slightly reduced in size. Deb is obviously continuing to respond well to the continuous chemotherapy. It is now 8 months without significant progression of the tumour.

Blood tests

The blood analysis machine was not working so Debs blood samples had to be sent to the lab and we did not get the results while we were at the QE. However Dr Sanghera had looked at Deb's blood test results from last month and said that the lymphocyte count (a type of white blood cell that fights infection) was slightly low. He was concerned that Deb may be susceptible to a type of pneumonia (pneumocyctosis) and has prescribed a preventative antibiotic which Deb will have to take twice a day, three times a week. When we did get the blood test results Deb's lymphocyte count was higher than expected (not good news could be due to an infection) but we are continuing with the antibiotics.

(Pneumocystis pneumonia (PCP) or pneumocystosis is a form of pneumonia, caused by the yeast-like fungus Pneumocystis jirovecii. This pathogen is specific to humans. It has not been shown to infect other animals, while other species of Pneumocystis that parasitize other animals (all of which are mammals) have not been shown to infect humans.[1]
Pneumocystis is commonly found in the lungs of healthy people, but being a source of opportunistic infection it can cause a lung infection in people with a weakened immune system. Pneumocystis pneumonia is especially seen in people with cancer, HIV/AIDS and the use of medications that affect the immune system.)

Other health related issues

Deb and I have started a six week course in exercise and relaxation at St Giles Hospice, Sutton Coldfield. The exercise is all done sitting down but all muscle groups are worked. It is good although I cannot shake off the feeling when I am sat on a chair waving my arms about that I am in a old people's home and the bingo will be brought out next. For the relaxation we are trying a different technique each week. Last week was sensing each part of your body and then letting go. This week was a visualisation technique. You are on a beach, the sand is golden, the warmth of the sun etc etc... The plan is that Deb and I are going to find some time to do this everyday. We haven't quite managed it yet.

We have also seen the psychologist at the QE. She is helping us to come to terms with what has happened. We have had two sessions so far. We have talked about how Deb was diagnosed, her treatment since then, our feelings and emotions. Our aim is to improve the quality of the time we have left. It is good to talk to someone in a structured way but no one can make the tumour go away. Perhaps we can learn to come to terms with our situation.

8 September 2009 - Appointment with neurosurgeon, QE hospital

When Deb was first diagnosed, following her biopsy we saw Mr Kay, the Neurosurgeon and discussed surgery. He advised that surgery was not the best option. Since then Deb's case has been raised several times at the QE multi-disciplinary team meetings and each time the surgical option has been reviewed. As a year has now passed and we have had number of MRI scans Deb and I asked if we could meet Mr Kay to review the position with regard to surgery.

We met Mr Kay on 8 September. He started by asking what could he do for us. Deb was slow to respond so I started to speak and he shut me up and said he wanted to hear directly from the patient. This was good. Deb said that we had discussed surgery a number of times with Dr Sanghera but it had been ruled out and we both thought it would be useful to speak directly to Mr Kay.

We started by looking at a scan from May 2008 ie when Deb was first diagnosed. Mr Kay showed us the total size of the tumour, the Grade IV abnormality (where the biopsy was taken from) and the oedema (fluid) in the brain around the tumour site. He then showed us the last scan (from July 2009). On screen he measured the bulk of the complete tumour and showed that over the period of Deb's treatment the tumour had reduced in size by 10%. (He said 10% may not seem like much but in volume terms it was a lot. I did some calculations and using the formula for the volume of a sphere worked out that if the diameter reduces by 10% the volume reduces by 27%). He showed us the differences in the grade IV abnormality. In 2008 it showed up all white on the scan where the contrast medium was used (indicating a large blood supply to this area and lots of growth). In 2009, although the area was about the same size the centre was now completely dark showing necrotic cells with a lighter edge. He also compared the level of oedema between 2008 and 2009; again this had significantly reduced.This was all good news showing Deb was responding very well to the treatment.

Mr Kay then showed us the part of the tumour he could remove by surgery. This was about 40 to 50 % of the tumour located on the right hand side of the brain and included the grade IV abnormality. He said at this time there was little advantage in carrying out surgery. As we have been told before he said that there were abnormal cells all around the tumour and removing this one area would not improve Deb's prognosis. The removal of some bulk may improve fluid flow within the brain and allow a reduction in steroid dose. But if this did happen the reduction would only be minor and Deb would still have to take daily steroids and would have the same side effects. Mr Kay considered the operation to remove this part of the tumour to be relatively low risk but any brain surgery is potentially hazardous to the patient. He quoted the examples of Seve Ballesteros and Senator Kennedy, both who nearly died during surgery on their tumours.

Some brain tumours can develop 'cysts'. These can develop very quickly and cause local swelling. Or the tumour itself might start to progress more rapidly. Under these conditions surgery may well be appropriate.These issues would be kept under review and if at any time in the future conditions changed, the surgical option would be reviewed.

I said that throughout Deb's treatment we had concentrated on the grade IV abnormality. The biopsy sample was taken from there and after each subsequent scan this is the area we have concentrated on. I asked that as this was the area of most concern wouldn't removing it at this time, while Deb was still well, 'buy us some more time'. Mr Kay said that because Deb was so well and obviously responding well to treatment it was not the right time to operate. If the tumour progresses or Deb deteriorates then at that time we should reconsider surgery.

Mr Kay ended the meeting by saying he didn't propose to call us in again but he would see us at any time if there was an issue we wanted to discuss with him.

This was a good and positive meeting. I thought that if anybody had to operate on my brain I would choose Mr Kay.

Some photos from August

31 August - View from top of Spinnaker Tower, Portsmouth :taken by Tom Hams during our stay with Andy and Steve and Becky and Tom (and Katie) in Lee on the Solent

9 August - Zoe and Lizzie on the train to Lydney during our stay at Whitemead in the Forest of Dean

24 August 2009 - Appointment at QE Hospital

Sorry I am late with this post. Deb had her usual monthly appointment with the oncologist on 24 August. Dr Sanghera was on holiday so we saw his registrar (I didn't catch her name). She had obviously been told to just mind the desk and don't change anything unless you have to. We therefore rushed through the appointment in a few minutes. I don't think she even lifted her head to look at us. She asked how Deb had been (She had been good), she looked at the blood results (these were good) and she wrote out a prescription for more chemotherapy. That was that. Nothing much to report. She did say Deb would have another scan towards the end of September.

27 July 2009 - Appointment at QE Hospital

Deb had her fifth MRI scan since the radiotherapy treatment yesterday on 26 July. Today's visit to the QE was to see Dr Sanghera and get the results.

MRI Scan

MRI scan was carried out on a Sunday - yes a Sunday. Its good to see the NHS making full use of expensive resources. Today we got the results of the scan and it was more good news. The scan showed that the active part of the tumour (the grade IV part) was still stable and was slightly smaller in size than 2 months ago. This is now 6 months without any significant progression of the disease. The low grade part of the tumour was also slightly smaller than at the last scan. Dr Sanghera was pleased with the progress and following Deb's good blood test results prescribed another month of continuous chemotherapy.

Results of Multi Disciplinary Team Meeting

At the last appointment with Dr Sanghera we had again discussed whether surgery was appropriate and this option had been discussed at an MDT meeting. Mr Kay, the neurosurgeon, said he could remove the active part of the tumour (or at least the active bit we can see on the scan).The opinion of the team was that surgery would not improve Deb's prognosis but may have some benefits in reducing the mass effect from the tumour and oedema (fluid around the tumour) There are risks from surgery and the balance of opinion thought that while Deb was responding well to the temozolomide treatment surgery was not the best option. However Deb and I are to have a meeting with Mr Kay to discuss the issue.

Steroids

Following the last appointment with Dr Sanghera, Deb dropped her steroid dose from 3 mg per day to 2 mg. After 10 days to 2 weeks she found she was suffering from increasing dizziness and after discussion with the clinical nurse specialist went back up to 3 mg. This seems to be about the right level for her. I asked if oedema could be seen on the scan (the tumour creates lots of fluid in the brain) and if so could we use the scan to monitor the effectiveness of the steroid dose. Dr Sanghera showed us another view of the scan which clearly showed the oedema around the mass of the tumour but Deb's symptoms are a more reliable way of deciding what dose of steroids is appropriate.

Drug trials

Following discussion of drug trials at the Conference we raised this with Dr Sanghera. The only trial currently ongoing that could have been relevant is the 'Regal' study (which is using a new drug cediramib with lomustine) but this is used when a tumour has returned after initial treatment and not appropriate for Deb.

Chemotherapy

I asked how long Deb could continue on the chemotherapy? Dr Sanghera said Deb was tolerating the drug well and we would continue with the continuous dose until it was obvious it was no longer effective. In the long term (12 - 18 months) chemotherapy can have adverse effects on the bone marrow and we may have to stop the treatment if this becomes a factor.

Everything continues as before. Next appointment we may see a Dr Sheriff as Dr Sanghera is away. Next MRI scan is due in 2 months but a longer period (3 months) between scans may be considered if tumour continues to remain stable.

19 July 2009 - Deb and sisters at the Race for Life, Hereford Racecourse

7 - 8 July 2009 Brain Tumour UK Annual Conference

On 7-8 July Deb and I attended the Brain Tumour UK Annual Conference held in association with University Hospital Birmingham. The conference which took place at the Abbey Hotel and Country Club, Redditch, was aimed at brain tumour sufferers, their families and friends. I don't intend to write in detail about the conference programme - if you want to find out more the conference presentations will be on the Brain Tumour UK website in a few weeks (http://www.braintumouruk.org.uk/index.htm). The conference included sessions on the

• identification of tumours (it is often difficult to identify the grade and type of tumour from the biopsy. In a recent study a number of neuropathologists were asked to identify tumours from a set of samples. There was only agreement in 52% of the cases. This is a difficult and complex area and the results are very subjective. However Deb's tumour, the GBM IV, is easy to identify, and not one where there is doubt.)
• current NHS treatment (the current standards are defined in the NICE guidance on Cancer Services - Improving Outcomes for People with Brain and Other CNS Tumours. See http://www.nice.org.uk/nicemedia/pdf/CSG_brain_manual.pdf. This guidance requires specialist clinics to be set up, decisions on treatment to be made by a multi-disciplinary team and the use of Specialist Clinical Oncology Nurses. Deb's treatment is fully in line with the guidance but according to others at the conference there are variations in practice across the country.)
• sessions on the latest research into brain tumour treatment, chemotherapy drugs and clinical trials currently ongoing.

It was along and tiring 2 days but well worth it. Some of the things I liked about the conference:

1 The concept of a conference which allows patients and carers to get together with professional staff in a non-medical environment and talk informally about the disease is an excellent idea. When you see your consultant at hospital they are always running late and don't have time to discuss general issues. You could do this at the conference. And because you are not talking specifically about you it is a good venue to discuss sensitive issues like palliative care and end of life planning. If other types of cancer and serious illness don't have these types of conferences - they should.

2 The speakers at the conference concentrated on the scientific method. Drugs and technologies which have been proved by peer-reviewed scientifically based research to improve outcomes. I like this. Not a foot rubbing, crystal gazing herbalist in sight. When I was at school I remember kids with braces on their legs because of the effects of polio, I was seriously ill with whooping cough, my mother nearly died from diphtheria. All diseases which have been eradicated by the application of science. Now we seem to want whatever is new - irrespective of what it costs or whether it has been through clinical trials. The attitude is: if it is available I should have it. And of course the drug companies encourage this. Its wrong. We must stick with rigorous scientific methods of evaluation for new treatments.

3 I learnt a lot from the sessions on new developments in chemotherapy for treatment of brain tumours. Research is being carried out into the molecular basis of cancer and has shown how the chromosomes in a glioma cancer cell are damaged and mutated. New treatments will target the pathways within each cell that allow the disease to take hold. In the future people with brain tumours will have their DNA analysed and will then be provided with a drug designed specifically for their tumour. The stuff of miracles.

29 June 2009 - Appointment at QE Hospital

Visit to the QE on 29 June for blood test and to see Dr Sanghera. We discussed the following issues:



Deb's progress over the last month



In recent days Deb has not felt so good. Her headaches have been more painful and of longer duration. She has been more dizzy and has felt sick. The dizziness was of some concern because this was of the type she experienced before treatment started and we were concerned it might be due to the mass effect from the tumour. Although Deb has been doing a lot. This is Deb's diary for the last week:



Wednesday - Visit to Steve and Carole in Bristol

Thursday - Trip with Sutton Cancer group to theatre in Lichfield - Deb said she laughed a lot - just what she needs

Friday - Cherry's birthday party (great curry Martin - got home about 11:30 pm)

Saturday - Dinner at Nicky and Neil's (Sam's Jenni's parents)(They live in 30 acres of countryside in Warwickshire and have the most beautiful herd - 25 animals - of alpaca. )
Got home about 11:45 pm.


On Sunday Deb was supposed to be doing the Race for Life at Sandwell Valley but not surprisingly she did not feel up to it and spent most of the day resting. I'm going to have to take more control of her diary and book in some rest days.



Chemotherapy



The blood test was OK. The red blood cell count was a little below the normal range but Dr Sanghera was happy and prescribed another month of chemotherapy. Dr Sanghera explained that the 'standard' treatment with temozolomide in the UK is for a six month period. (The research shows it is effective for 6 months and after that some researchers think the cells become resistant and the drug has less effect.) However in the USA a continuous regime is normally used. This is why it is only approved by NICE for a six month period. Following the combined chemo/radiotherapy Deb has so far been taking temozolomide first in a monthly cycle for 4 months and then, following the poor scan result, on a continuous daily basis for a further 4 months. This is at variance to the 'standard' treatment. Dr Sanghera is of the opinion that the continuous regime is more effective and we will carry on with this until there is evidence to the contrary. The applications for providing the drug have not been questioned and funding does not seem to be an issue.



Steroids



Dr Sanghera was keen to ensure Deb had a good quality of life. We discussed the following side effects from steroid use that cause Deb distress:



Frequency of micturation - Deb has to pee a lot. Sometimes this is difficult to control and we have to be conscious of ensuring toilets are close to hand when we go out. Dr S thought we should be able to do something about this. First we have to rule out diabetes and thyroid malfunction (both rare side effects from steroid use). Deb was tested for this 3 months ago but we have arranged with our GP to have a further test. If these are negative Dr Sanghera will arrange for Deb to see an endrinocologist who hopefully will be able to sort this out.





Weight gain - over the past year, since starting the steroids, Deb has put on 2 stone in weight. This is very depressing for her. We discussed the options but these are limited. There are alternatives to dexamethasone (Deb's current steroid) but these may not be as effective and could have similar side effects. As a first option we are going to try reducing her daily dose from 3 mg to 2 mg. If this causes Deb problems we will know after 3 days and have to return to the current dose.



Surgery - Dr S is to discuss Deb's case with Mr Kay the neurosurgeon at the meeting tomorrow. They will review surgery to see if there are any suitable options for reducing the bulk of the tumour (and therefore steroid dose). We will discuss at our next meeting with Dr S.

MRI Scan

An appointment has been made for another MRI scan at the end of July.


Next week we are attending the Brain Tumour UK Patient and Carer Conference at the Abbey Hotel Golf and Country Club. Dont worry I will take full and copious notes so you wont miss a thing.

Some photos taken in June 2009

2 June 2009 - Flight of 21 locks at Hatton, Grand Union Canal (opened 1799)




4 June 2009 - Deb's 50th birthday present arrives

4 June 2009 - the dogs in Sutton Park - click on the photo - the dogs are the 2 white dots in the distance

18 June 2009 - Deb and Lizzie try out her birthday present

1 June 2009 - Appointment at QE Hospital - MORE GOOD NEWS

Deb had her fourth MRI scan since the radiotherapy treatment on 22 May. Today's visit to the QE was to see Dr Sanghera and get the results. It was more good news. The scan showed that the active part of the tumour (the grade IV part) was stable and had not got any bigger since the last scan. This is now 4 months without any significant progression of the disease. The scan also showed that the large mass of the low grade part of the tumour was considerably smaller than at the last scan. Dr Sanghera was pleased with the progress and following Deb's good blood test results (WBC - 10.5, RBC 4.16, PLT 207) prescribed another month of continuous chemotherapy.

MRI Scan

We looked at the scan at length. The grade IV part is on the right hand side of the tumour which is in the right frontal lobe of the brain. Although we had discussed it before I asked Dr Sanghera what that specific part of the brain did. He explained it controlled emotions and behaviour. I asked how the brain was being affected by the tumour and he said the main problem was the mass effect i.e. the volume of the tumour would put pressure on adjacent parts of the brain.

I asked how the low grade part of the tumour had shrunk. My understanding was that the chemotherapy attacks the active parts of the tumour by disrupting cell division. The low grade parts should not therefore be significantly affected. Dr Sanghera said the chemotherapy affected the genetic make up of the tumour cells and sometimes low grade tumours could also be affected. (I'm still none the wiser. Ill look it up on the Internet and ask him again next time we see him.)

When we saw Mr Kay, the surgeon, when Deb was first diagnosed, he said that brain surgery might be reconsidered if the tumour shrunk considerably during treatment. Given the shrinkage observed on the scan I asked if we should now be reconsidering surgery. It was decided that while Deb was stable we would not pursue surgery but this would be reconsidered if there was any deterioration.

Steroids

Both the frequency and duration (but not the severity) of Deb's headaches have increased in recent weeks. Deb has also been feeling more tired and is resting for longer during the day. Dr Sanghera asked Deb how was her quality of life now compared with six months ago - better, worse or about the same. Deb said 'about the same'. We discussed increasing the steroid dose but decided to leave it at its current level (3 mg per day)


Next MRI scan due in 2 months time.

27 May 2009 - Deb's daily drug list

This is Deb's current medication:

1 1 x omeprazone capsule (20mg) - reduces amount of acid produced in stomach. Relieves & prevents heartburn and ulcers.

2 2 x dexamethasone tablets (3mg) - synthetic steroids for treating swelling on the brain.

3 1 x bisopronol fumerate tablet (5mg) - beta blocker - slows the heart rate and reduces blood pressure (to prevent palpitations)

4 1 x alendronic acid tablet (70mg - once per week) - bisphosphonate - prevnets loss and helps to rebuild bone (osteoporosis).

5 2 x calcichew D3forte tablets (500mg) - combination of calcium and vitamin D to keep bones healthy (osteoporosis)

6 1 x temozolomide capsule (100mg) - chemotherapy treatment for brain tumour

7 Paracetamol as required.

23 May 2009 - Deb's 50th Birthday Party

Deb's birthday toast ( approximately - some I don't remember so well)

"We are here today to celebrate Deb's 50th birthday. During 29 of those 50 years Deb has lived with me and during that time we have had 2 children, 3 houses and 11 cars. Generally we have enjoyed our time together. We have enjoyed bringing up our children (the early years at least), our walking, we have had some great holidays together and we enjoy our football. 20 years ago last month we moved into this house. That was a really good move for us. We have had good times here and made some great friends. So today should be a time of celebration but unfortunately on this day last year instead of driving up to North Yorkshire for a walking holiday we were sat in A&E at Good Hope Hospital being told that Deb had a brain tumour. This event has cast a long shadow over the past year and has turned what should have been a joyous occasion into one tinged with sadness.

When I first met Deb I was attracted to her energy, enthusiasm and life force. Despite the events of the past year it seems to me that these qualities remain largely undiminished. So if anybody deserves a happy birthday it is Deb. So please raise your glasses and join with me in wishing Deb a happy 50th birthday."

15 - 18 May 2009 - Deb and the Tattersall women have a weekend in Instow, North Devon

Deb and her sisters and her sisters-in-law and their female children had a long weekend in a house in Instow, Devon to celebrate Deb's and Julie's birthdays.

Outside the house at Instow
The karaoke evening






Deb and Julie combined birthday cake - 90 candles

8 May 2009 - Update on things medical

Tumour:

Saw Dr Sanghera at QE on 5 May 2009. This was a tiring day. We had a long wait for the blood test, then a long wait for the results. Because of the bank holiday, the clinic was in the Neurosciences outpatient department and not the Cancer Centre. When we got there the waiting room was full and there was another long delay. Appointment was at 10:00 am but saw Dr Sanghera at about 1:00 pm.


Blood test results were good. (WBC = 10.0; RBC = 4.12 [slightly low]; PLT 347). Chemotherapy to be continued on a daily basis for another month. Next MRI scan on 22 May and next appointment with Dr Sanghera on 1 June.


We discussed the fact that the first anniversary of diagnosis of the tumour would be on the 23 May. The statistics for glioblastomas state that the average length of time between diagnosis and relapse is about 15 months. So the anniversary brings mixed feelings: it is good that Deb has been relatively well without effects from the tumour for a whole year but you also worry that time is marching on. Dr Sanghera re-empasised that everyone was different, that an average is only an average and that he was pleased with Deb's progress so far. We discussed Deb's headaches. He told her not to put up with the pain (Deb has a reluctance to take more tablets) and not to hesitate to take paracetamol. If the headaches get worse we could put up the steroid dose but Deb does not want this. I raised the issue of new treatments. I had read on the internet that new treatment therapies for glioblastoma such as Avastin and CPT-11 had shown promising results in trials. Dr S was aware of these. The QE is in the process of obtaining a license to trial Avastin and it is possible that this may be available to Deb if there is a relapse of the tumour.

Osteoporosis:

Deb has been experiencing some back pain and because one of the side effects from the steroids can be osteoporosis our GP arranged a bone density scan. Deb had the scan on 6 May at Good Hope and we got the results from the GP on 19 May. These found that Deb was osteoporotic. The scan result was 2.6 (anyone with a result of more than 2 is deemed to be at risk from osteoporosis). The doctor has put Deb on biphosphonate tablets (one per week) and calcium tablets.

Cardiology:

Following Deb's ECGs taken during a palpitation, we saw the cardiologist ( Dr Shui Hao) at Good Hope on 8 May. We discussed whether the beta blockers were working. Deb has had further palpitations but these have been mild and of short duration. Deb's heart rate is already slow and the doctor was reluctant to increase the dose. If the palpitations continue we may have to change the medication (or have a small operation!). Deb is to return to Good Hope on the 3 June for an ultrasound scan of the heart and wear a 24 hour monitor before any further decisions are made. All this is a bit of a pain. It has nothing to do with the tumour, is not life threatening and something Deb has lived with for 20 years. Is it really worth all this effort?

25 April - 1 May: Holiday in Anglesey

Telford's suspension bridge linking Anglesey to the mainland

The landscape behind the village of Penysarn, Angelsey

Parys mountain on Anglesey was rich in copper and heavily mined in the 18th and 19th centuries (it provided the copper for the hull of HMS Victory). It was once the biggest man made hole in Europe. Now just an eyesore. The building on top of the hill is the remains of an old windmill used for pumping water from the mine workings. The cottage where we stayed in Penysarn had great views of this.

Newborough Beach, Anglesey

The best place in Anglesey - fantastic crescent of sand with the mountains of Snowdonia behind.


Anglesey would not be in my list of top places to visit. Nowhere to eat out, nowhere to buy anything decent to eat in, uninteresting scenery, plenty of birds - stay on the A5 and catch the ferry to Dublin.

April 2009 - Pictures

20 April - Cherry tree in back garden in full bloom

A very good year for cherry blossom -the weight has bent the branches towards the ground

20 April - Dogs with their chew

14 April - Dogs in the sea

Visited Kay and Mike for the weekend and went to Tenby for the day. The dogs first taste of the sea.

(Isnt it funny the things you remember - or perhaps more significantly the things you forget. I cannot remember the first time I saw the sea. You would think a momentous event like that would be seared into your brain for life. )

12 April 2009 - The First Anniversary

On 12 April 2008 Deb and I visited Good Hope Hospital, Sutton Coldfield. Deb had been to our GP with headaches and he had referred her to Dr Mazibrada a neurologist. He sent her for a precautionary CT scan when the tumour was first diagnosed.

6 April 2009 - Appointment at QE Hospital - AT LAST GOOD NEWS

6 April - Garden Frederick Road - Before the hospital
visit

Deb had her third MRI scan since the radiotherapy on 30 March. This visit was to find out the result. A stressful time especially after the poor result of the last scan. Deb has been on edge all last week. If that was possible, the difficulty she has staying asleep has got worse. Sam and Kate came with us to the hospital. We all expected bad news and further tumour progression. However we were all proved wrong. For the first time since Deb was first diagnosed; a doctor actually gave us good news. The grade IV parts of the tumour had not got any bigger. This is great news. Either the tumour has stabilised following the radiotherapy or the change in the chemotherapy regime to a continuous dose is having an effect and slowing the growth.

Deb had another blood test and the results were OK. The red blood cell count was a little lower than normal but not enough to affect the chemotherapy and Dr Sanghera confirmed we would continue with the daily dose as before. He also confirmed that the liver results were not a problem. He has also suggested that the GP does the next set of bloods in 2 weeks time. I liked the fact that he said this. It means he feels more relaxed about Deb and is happy not to see her for a month. This means we can relax too. Go and see friends or book a week away perhaps.

Next scan arranged for 2 months time. Lets hope things stay as they are. In this case no news really is good news.

4 April 2009 - Zoe and Elizabeth's visit to Grandad and Deb

4 April - Ash End House Farm, Nr Tamworth - Zoe and Elizabeth get to stroke the chicks

1 April 2009 - Visit to Church House Barn

Liz and Chris' barn conversion - Richard's Castle, near Ludlow Shropshire

If you fancy a great holiday break staying in the Annex - I can recommend the walk up around the church and up to the common or along the Mortimer Trail into Ludlow - go to the website:

http://www.churchhousebarnludlow.co.uk/

or contact

Chris & Liz Smith

Church House Barn, Richards Castle, Nr. Ludlow, Shropshire SY8 4ET

Tel: 01584 831160

27 March 2009 - Unfastening the ties that bind

27 March - HSE Offices, 1 Hagley Road, Birmingham - last day

10 March - Drinking Glen Garioch from my quaich

10 March - My team in Aberdeen took me out for a meal at the Silver Darling (the Aberdeen equivalent of the Fat Duck I guess) and presented me with a quaich - a Scottish friendship cup for drinking whisky. This was all totally unexpected. I felt very emotional that people who I have only worked with for about 18 months (and remotely managed so our relationship was not a close as it should have been and neglected because of what's happened to Deb) should have bothered to do this. I asked them why they felt I had been a good manager and they said they liked me because 'I followed procedures'. Well that's that then; 35 years of honing skills and knowledge and I have just about learnt 'to follow procedures' Hah.

19 March - My team at Bootle (well most of them) took me out for a drink at lunch time and gave me two books about the offshore oil industry by Paul Carter : Don't Tell Mum I Work on the Rigs She Thinks I'm a Piano Player in a Whorehouse and This is not a Drill Just Another Glorious day in the Oilfield. I didn't ask them if they thought I was a good manager. Eddie had already told me he thought I was a waste of space cause all I did was follow procedures.

26 March - My farewell presentation in Aberdeen. My boss said a few kind words. I had said I did not want a gift and asked for contributions to Brain Tumour UK. The whip round had raised £186 - excellent.

27 March - My last day in the Birmingham Office. At lunch time went out to the Apres Bar with friends who I had worked with throughout my career in HSE. Deb, Kate and Jason also came. A sad, nostalgic occasion. Now I was leaving I realised how big a part of me work was. But there is now the future. A blank canvas to be filled with clear bold strokes of colour.

23 March 2009 - Appointment at QE Hospital, Cancer Centre

25 March - Back garden Frederick Road - Deb and I with the dogs

23 March - Appointment with Dr Sanghera. Interim appointment to carry out blood tests.

Blood Tests

Deb is now on continuous chemotherapy. Remember this is a drug which targets all cells that are growing rapidly, not just tumour cells but also the bone marrow and the lining of the gut and lots more. So blood tests are now on a fortnightly basis to ensure that despite the effects of the chemotherapy Deb's has enough white blood cells to fight infection and platelets to stop the flow of blood should she start to bleed. Also this time Dr Sanghera had asked for tests to assess liver and kidney function. Unfortunately the blood analysis machine was not working and the tests had to be sent to the main hospital lab. This created a two hour delay and we left before the results were available. Rang Fred the next day to get results. He said bloods were OK but liver test was raised. This can be a problem - the chemotherapy drug is metabolised by the liver. Fred consulted Dr Sanghera who agreed we could continue with the temozolomide but we would monitor the liver function at future tests.

Clinical symptoms

Deb has been having a lot of back pain and has felt some weakness in her left side - particularly when going up and down stairs. . Dr Sanghera examined her and said the effects were not due to the tumour. The steroids can cause osteoporosis and he suggested a bone density scan. Deb is still feeling low since the poor result of the last scan. We have not heard from the psychologist attached to the Cancer Centre and Fred agreed to chase this up.

21 March 2009 - Zoe's Birthday Party

21 March - Abingdon - Zoe riding her bike (pink) - almost

21 March - Abingdon -Zoe blowing out the candles on her cake at her 5th birthday party

9 March 2009 - Appointment at QE Cancer Centre

27 February - Deb beside the River Dove, Peak District, Derbyshire

Today we had a further appointment with Dr Sanghera. He was very relaxed and talked to us as though we were friends not just a patient. Deb has now completed 4 weeks of the continuous chemotherapy regime. She has tolerated the drug well and has not needed to take any of the anti nauseant medicine. We discussed the following issues:

1 Blood test

Deb's blood test results were again very good (WBC - 13.1; RBC - 4.28, Platelets - 358)It was agreed that the continuous chemotherapy would continue.

2 MRI Scan

The results of the last scan were not very good. At the appointment when we discussed the results (on 9 Febrauary) Dr Sanghera had said that it looked as though the tumour had not responded to treatment. However at the following case conference when the scans were studied by neurologists and radiographers, it was decided that Dr Sanghera had been a bit pessimistic. Dr Sanghera had rung us following the case conference to discuss what the meeting had decided. I was still not clear as to why the others at the meeting had been more optimistic than Dr Sanghera (After all Deb and I had seen the scan and the tumour was bigger) so I asked him to explain again why the results were more positive than he thought. He said that the science of reading brain tumour scans was still in its infancy. Doctors are not exactly sure what they are looking at and are continuing to learn how to interpret the results. There may be continuing pseudo progression affects. For a Grade IV tumour that was not responding to treatment you would expect more growth than Deb had, so it appeared that the radio/chemotherapy had slowed growth to some extent and was having an effect.

Deb had got a date through for her next scan (Sunday 15 March). Dr Sanghera thought that this was a bit too soon and it was agreed that the next scan should be deferred until the beginning of April.

3 Emotional State

We have all been down since the last scan result. Deb's sleep is not very good with her waking up between 4 and 5 every morning. We all seem to be sitting around just waiting for something to happen. For example: Following her palpitation Deb came out of Good Hope hospital on Saturday 14 February. 2 days later she is downstairs in the morning when she calls up to say she feels unwell I go downstairs and while we are sat on the bottom of the stairs Deb faints, She faints again later and had 48 hours of sickness and diarrhea. We assume that the fainting is due to the tumour and decide to take no action but continue to monitor the situation. It wasn't until on the Wednesday morning, when I got up at 5:30 in the morning and fainted in the bathroom and had the same symptoms as Deb for 48 hours that we realised that Deb's illness was nothing to do with the tumour at all but due to a norovirus infection we had picked up at Good Hope Hospital. (They have since closed two wards at Good Hope because of this). This state of continuously waiting for something to happen is not good. Dr Sanghera and Fred agreed that we should have some help with this and Deb (and maybe the whole family) should be referred to the psychologist at the Cancer Centre.

4 Next Appointment

In 2 weeks time at QE for further blood tests

13 February 2009 - A night in hospital

As some of you know Deb has suffered from palpitations for many years. Usually she has one or two episodes a year which last about one to two hours. While having a palpitation Deb's pulse goes up to 190 beats per minute and her blood pressure drops. Around Christmas Deb had 3 episodes in quick succession and we mentioned this to the oncologist in case it was related to the tumour treatment. He said not but that the condition should be treated. Our GP referred Deb to a cardiologist who we saw on 6 February at our local hospital (Good Hope). He said he could not do much until we had identified what type of arrhythmia it was. However we discussed various options including taking pills to stop it happening (Deb was not keen on more pills) or having a recoding device implanted under the skin that could be activated when an attack occurred. In the end we settled on getting to our GP/hospital as soon as a palpitation started and putting Deb onto an ECG.

At about 04:30 pm on Friday 13th ( Liz was visiting us) Deb had a palpitation. We went to our GP's surgery and the nurse put Deb directly onto an ECG. This confirmed that Deb was suffering from a type of arrhythmia called supraventricular tachycardia (SVT). The rapid beating of the heart during SVT can make the heart a less effective pump so that the cardiac output is decreased and the blood pressure drops. The following symptoms are typical with a rapid pulse of 150-250 beats per minute: pounding chest, shortness of breath, rapid breathing and dizziness.

The GP referred us to Good Hope with a letter so they would see Deb straight away. This worked. They put Deb in an intensive care cubicle and hooked her up to various monitors. They all started bleeping and flashing alarms. Her pulse rate was about 200 beats per min and was 'extremely tachy'. The doctor tried to stop the attack by getting Deb to blow into a syringe and by manipulating her vagus nerve in her neck Neither of these procedures worked. She was then given an intravenous injection of adenosine. This drug causes transient heart block. Before putting it in the doctor warned Deb she would have a feeling of 'impending doom' while the drug worked. This proved successful and her pulse rate returned to normal.

However they did insist on keeping Deb in overnight for observation. She was eventually discharged about midday on the Saturday. They have prescribed beta blockers which she takes daily and which will hopefully prevent a further attack.

Dog Pictures + Zoe and her snowman

No reason - I just like the pictures

I need to lose weight - update

START WEIGHT (05/01/09) = 13 st 4 lbs
TARGET WEIGHT = 12 st 4 lbs
CURRENT WEIGHT(16/02/09) = 12 st 9 lbs

I have lost 9 lbs in 6 weeks. This is remarkable given my recent lapses with roast dinners and Indian takeaways. These are the foods which I must stop eating if I am to achieve my target weight: peanuts, wine gums, roast potatoes and poppadoms.

16 February - Retirement from HSE

Today I submitted my formal notice of retirement. I am supposed to give 3 months notice but we have agreed a shorter time and my provisional retirement date is 31 March 2009.

I have been with HSE for 36 years and I have really enjoyed the variety of my work. I have been on the top of Humber Bridge and into the sewers of Birmingham. I have been in operating theatres and TV studios. I have been inside the double-skinned bottom of a ship under construction and the torpedo tubes of a submarine in dry dock. I have seen a rainbow inside a power station cooling tower and thrown up with the odour of rotting flesh in a fish meal factory. I have been on a helicopter to an oil rig 50 miles north of the Shetland Isles. And next month it all ends.

I have a list of things I can do in retirement. But I welcome any suggestions.

9 February 2009 - Results of 2nd MRI scan

Deb holding the new additions to our family - Flynn is on the left and Bertie on the right.

Today we went to the QE hospital and saw Dr Sanghera to discuss the results of Deb's second MRI scan since she had radiotherapy treatment. This second scan, taken on the 29 January, was compared to the baseline scan taken in November.

The results were not good. The latest scan showed that the active parts of the tumour had not responded to treatment and had significantly increased in size. This is real tumour growth and not pseudo-progression due to radiation effects.

We discussed various issues with Dr Sanghera:

1 Chemotherapy Deb's chemotherapy regime will change. Instead of a monthly cycle of 5 days chemo followed by 23 days off, she will now be given a lower dose of the chemotherapy drug (temozolomide) on a continuous basis. The new dose will be 100 mg per day (previous dose 380 mg per day during treatment).

2 Steroids As discussed in the blogpost on 12 January, following the last visit to the hospital Deb reduced her steroid dose to 1.0 mg per day. After a few days she found she started to have persistent headaches. After consulting the Macmillan nurse (Fred) it was agreed she should increase her dose to 3 mg per day. This increase did cure the headaches. Dr Sanghera thought the headaches may have been due to tumour growth and suggested Deb remain at a dose of 3 mg per day.

3 Blood tests Deb's blood test results today were good (WBC 12.5, RBC 4.2, Platelets 227). It was agreed that continuous chemotherapy would start today.

4 MRI Scan The next MRI scan is scheduled for 2 months time when the effect of the change in the chemotherapy regime will be assessed.

5 Surgery I asked again if surgery could be considered. Dr Sangera did not think that surgery would be a viable option but it would be discussed at the case conference meeting which will take place tomorrow.

6 Appointments Deb's next appointment at the hospital will be in 2 weeks time to have further tests to review the effect of the continuous chemotherapy on the blood.

I asked about Deb's prognosis given the scan results. Dr Sanghera did not know. He said we should concentrate on the positives ( doctors must be taught this phrase at med school. It was what the doctor said to me when I first went to the QE to talk about Deb's diagnosis and subsequently at every meeting when they have had to communicate bad news ). The positives are: 1) By scanning the change in the tumour has been caught early and the treatment can be adjusted 2) Some people have responded well to the continuous chemotherapy treatment and it may bring the tumour under control 3) If the continuous temozolomide treatment does not work there are other drugs that can be tried (this is most likely to be a combination of 3 drugs called PCV).

Can I ask family and friends not to call. Deb and I do not feel like talking about this right now. Deb will call you at some time over the next few days. Thanks.

Fund raising in Wales

Darren, Deb and Karen with signed football shirts

On Saturday 31 January, Deb and I travelled to Llantwit Major in South Wales. Darren (who is the son of Julie - Deb's niece) had organised a fund raising event in his local rugby club. It was a great night. The place was packed (Darren had sold 160 tickets). I made a short speech saying why we were there. The highlight of the evening was an auction of signed football and rugby shirts. The shirts, including those signed by the first team squads at Chelsea, Arsenal and other major premiership clubs (and Nottingham Forest and the Wales Grand Slam winning team of 2008) went for enormous amounts of money - between £200 and £300 each. There were also other prizes auctioned (including a sailing holiday on the Isle of Wight, a signed book by David Campese) and a raffle. In total over £4000 was raised. The money will be split between Brain Tumour UK (a charity which gives support to brain tumour sufferers their family and friends) and our local brain tumour support group. After the auction a local band played - who were really good - they started with a cover of the Kinks 'You Really Got Me': excellent). All the Tattersall clan were there and Deb had a great night out. Thanks to Darren who made all this happen.

12 January 2009 - 4th Cycle of Chemotherapy

Following last week's low platelet count we returned to the hospital today for further blood test. Results:

White blood cells - 9.1 K/uL (reference range 4.1 - 10.9)
Red blood cells - 4.0M/uL (reference range 4.2 - 6.3)
Platelets - 308 K/uL (reference range 140 - 440)

An excellent result. We did not see Dr Sanghera (the clinic was very busy) but saw his registrar instead. He prescribed the chemotherapy at the same dose as for the previous cycle (380 mg per day).

We also discussed Deb's steroid dose. It was agreed that she would drop from the current dose of 1.5 mg to 1.0 mg per day. We tried this before and went back up to 1.5 when Deb started to get more severe headaches. We will see how it goes.

Deb has received an appointment for a further MRI scan. This will take place at the Edgbaston Hospital ( a private hospital near the QE) on 29 January. We are not sure if this is the spectroscopy MRI scan or the next routine scan.

I need to lose weight!

START WEIGHT = 13 st 4 lbs
TARGET WEIGHT = 12 st 4 lbs
CURRENT WEIGHT = 13 st 1 lbs

A good start - 3 lbs in the first week. But we all know this is the easy part. Will power is strong (apart from the cheese).

5 January 2009 - Appointment at Queen Elizabeth Hospital

5 January 2009 - Deb sat on bed with a cup of tea and a Welsh cake

Today was supposed to be the start of Deb's fourth cycle of chemotherapy. We went to the QE and Deb had her usual blood test. The important results were:

White blood cells - 13.6 K/uL (reference range 4.1 - 10.9)

Red blood cells - 3.98 M/uL (reference range 4.2 - 6.3)

Platelets - 97 K/uL (reference range 140 - 440)

When we saw Dr Sanghera he was particularly concerned with the platelet count (platelets are tiny cells in the blood that help it to clot. They are made in the bone marrow and usually survive for only 7 - 10 days). The chemotherapy drug is designed to attack cells that are dividing quickly and therefore can have side effects on the short lived cells in the blood. It is recommended that chemotherapy is deferred if platelet levels fall below 100. Dr Sanghera therefore decided to delay the next cycle of chemotherapy for one week and we return to the hospital next Monday for a further blood test. He was concerned that we need to ensure that Deb's chemotherapy dose is appropriate and is not having too severe an effect on her body. To continue with the chemo now may reduce the platelet count even further and lead to significant problems. Fred (Macmillan nurse) said we should not be downhearted at this. It was routine and frequently happened.

We also discussed Deb's palpitations (or arrhythmia as Dr Sanghera called them). During an episode which lasts about 1.5 to 2 hours Deb's heart rate rises to between 185 - 190 per minute and her blood pressure drops to a figure that cannot be measured on our monitor. Deb has had these palpitations for a long time but before diagnosis of the tumour they happened once or twice a year. Now they seem to be happening once or twice a month. (She had one on the evening of our party - just as people were leaving). Dr Sanghera said these were not related to the tumour or the treatment but did need to be treated and we should go to see our GP.

3 January 2009 - Open House at the Eatons

Some pictures of family and friends at our house on the 3 January.

The purpose of the day was for Deb and myself to say thank you to everyone who has given us support over the last year. Not just practical help but more importantly emotional support and friendship at a difficult time. This is a gift beyond value. We are truly luckly to have so many family and friends who care.

Thanks to you all.

I need to lose weight!

This picture taken on New Year's Eve tells the story. Years of idleness and binge eating have taken their toll and I need to lose weight fast.

I toyed with the idea of taking a proprietary slimming compound - just vitamins and essential nutrients in a milkshake - but I have been convinced this is too drastic. So I will lose weight by taking the simple step of eating less and exercising more. If this does not work I may have to resort to the vitamins and water diet.

In a determined attempt to make me say no to that second bowl of pasta, I have decided to broadcast my weight loss on the blog. You can all share in my successes and failures as month by month I strive for a slimmer fitter me. My aim is to lose a stone in weight. I start today.

START WEIGHT = 13 st 4 lbs

TARGET WEIGHT = 12 st 4 lbs

CURRENT WEIGHT = 13 st 4 lbs