21st September 2010 - Meeting with Dr Sanghera, Neurosciences Outpatients Department, QE Hospital

DEFINITELY NOT GOOD NEWS!!

Saw Dr Sanghera to discuss the results of the last scan and possible future treatment. After discussing how Deb had been feeling since the operation we looked at the scans (still not understanding exactly what we're looking at). It is clear that the operation has reduced the overall size of the tumour but the Grade IV active parts are continuing to progress. The Gliadel Wafers inserted into the tumour during the operation have controlled tumour growth to some extent, and in this respect the operation was a success. However, the continuing growth of the tumour means we need to consider what can be done now.

Dr Sanghera thought that the best option was a course of PCV Chemotherapy (a combination of three drugs; Procarbazine, Lomustine (which is also known as CCNU)and Vincristine).

PCV chemotherapy is given to Deb as a day patient. Treatment involves an injection of vincristine (a colourless fluid) that takes about 5-10 mins to administer, a lomustine capsule (1 tablet), and procarbazine capsules which are taken daily for 10 days. After this course there is a rest period with no treatment for 32 days. This means that one cycle of PCV lasts for 6 weeks.

PCV is more aggressive than the the course of temozolomide chemotherapy that Deb had before and she is likely to experience more severe side effects. The most common being lowered resistance to infection, nausea, bruising, bleeding, anaemia, tiredness and feeling weak, numbness or tingling in hands/feet.

Dr Sanghera emphasised that PCV only had a 20-40% chance of effectiveness. Deb is well at the moment and he is reluctant to prescribe PCV if it makes her feel very ill with a chance that it might not be having much effect.

After discussing the issue Dr Sanghera gave Deb a week to go away and think about whether she wanted to go ahead with PCV or not. We have a further appointment with Dr Sanghera at the Cancer Centre next Monday.

After this meeting we met with Fred, (Macmillan Specialist Oncologist Nurse)he was more positive than Dr Sanghera about the chemotherapy. He said that people who responded well to Temozolomide also responded well to PCV. Deb had defied the odds to be so well for so long.

He did make us appreciate that we are now entering the final stages of Deb's illness. The decisions we have to make now are in regards to Deb's quality of life. Although no-one can put timescales on things, it seems likely that Deb has months rather than years.

14th September 2010 - Meeting with Mr Kay, Neurosurgeon, QE Hospital

Deb's craniectomy was on 22 July and she was discharged from hospital on 25th July. Since then she has been good. Her feelings of nausea have gone and her bouts of dizziness have largely disappeared. She has not had any severe headaches. There have been difficulties with getting booked in for an MRI scan but eventually this took place on 9th September at the 'old' QE, 7 weeks after the operation.

On 14th September we saw Mr Kay, the Surgeon. He examined the scar and asked about Deb's health. We then had a look at the latest scan. The tumour still occupied about the same amount of space (or maybe seemed a bit larger) and there seemed to be more "active" areas. Mr Kay explained that he had removed tissue from the middle of the tumour and this space was still there but now full of water. He also showed us a version of the scan which showed up the oedema in the brain. This has greatly reduced since the operation. I asked whether the amount of active areas on the scan (ie high grade tumour) could be taken as an indication of the effectiveness of the gliadel wafers. Mr Kay said "we should not focus on the scan but on Deb's health which is very good". He explained that Deb would have been in a worse place if she had not had the operation. The operation had brought her some time before a decline in her health sets in.

I think Mr Kay thought I was being critical of his work (I wasn't, I was just trying to establish exactly what we were looking at on the scan) and he reiterated that he had removed as much of the tumour as he could but would not go near any major blood vessels in the brain or the ventricles containing CSF (Cerebral Spinal Fluid).

He did say that there was a possibility that the operation could be repeated if the circumstances warranted it e.g. if Deb had problems because of a localised development within the tumour he might be able to remove it. He also said that during the operation they had considered inserting a shunt to drain off CSF but the tumour had not closed up the connection to the ventricles and they had decided that a shunt was not needed.

He finished by saying "I know I haven't answered all of your questions but you should concentrate on the fact that Deb is in good health and to look forward to Christmas". He said he would not need to see Deb again but the need for surgery would be kept under review at MDT meetings.

I came out feeling dissatisfied. Was it good or bad news? The scan looked worse than pre-op with more active areas but Mr Kay did not want to talk about the scan and said we should concentrate on Deb's health. We see Dr Sanghera, Oncologist, next Tuesday 21st September and hopefully he will let us know more.

11 August 2010 - Update

8 August 2010 - Deb showing off her scar (2 weeks after the operation)

Sorry I have not posted a blog for a while. I changed my broadband provider (a big mistake) and have not been able to access the Internet for 2 weeks.

On 2 August, Deb had her scalp clips removed (about 30 of them) by a nurse at the GP practice. This process looked very painful to a mere onlooker (the nurse used a tool just like a staple remover) but Deb said it wasn't too bad. The wound looked good; no redness or swelling and healing well.

Deb has rung the Clinical Nurse Specialists (Fred and Claire) on the last two Wednesdays. It has been agreed that she will now see both Mr Kay (surgeon) and Dr Sanghera (oncologist) on the same day; 31st August (Mr Kay first). Before then Deb will have an MRI scan (date to be confirmed).

Deb has continued the reduction in her steroid dose. She is now on 8mg per day. She will reduce to 6mg and then 4mg in the next two weeks. She will then stay on 4mg until we see Dr Sanghera. The steroids have caused their usual side effects. In particular Deb's face has swollen up, she is more jittery and anxious and is not sleeping so well.

As far as we can tell, Deb has not had any side effects from the gliadel wafers. I think, apart from the steroid side effects, her health has improved. Since the operation she has not had any dizzy spells, no nausea and less headaches. We are anxious to see the post op MRI scan and hope it confirms that the chemotherapy from the gliadel wafers has had a significant effect on the tumour.

28 July 2010 - Update

Deb is doing really well. She has been tired and has rested both morning and afternoon. But apart from that seems to be exactly as she was before the operation. (To give an example: she has started to worry about buying and sending birthday cards. I must admit that birthday cards do not figure high on my list of priorities even when I am well but surely they would be among the first thing you would stop thinking about if feeling poorly.)

Fred Berki, Clinical Nurse Specialist Neuro Oncology, following a conversation with Dr Sanghera, Consultant Oncologist, rang to discuss Deb's treatment post operation.

1 Deb will now not see Dr Sanghera on Monday 2 August. Fred sees little point in seeing Dr Sanghera so soon. An appointment will be made for 6 weeks time.

2 Deb will have an MRI scan in 4 weeks. This will provide a baseline picture of the situation post operation.

3. The reduction in dosage for steroids given by the ward is too rapid a drop. Deb should decrease her current dose of 12mg per day by 2mg each week until she reaches a dose of 4mg per day. Deb should stay on the dose of 4 mg until advised by Dr Sanghera. The slower reduction is in case of brain swelling following the insertion of gliadel wafers.

4. Deb or I should ring Fred or Claire each week (Wednesday, midday) to keep them advised of Deb's progress.

5. Deb needs to keep a watch on the wound if there is any swelling, redness or soreness she is to contact the hospital ward direct.

6. Deb should not have any direct side effects from the gliadel wafers (they contain a chemotherapy drug called carmustine) but the wafers can cause some swelling or infection inside the brain. Hence the need for a slow steroid reduction.

25 July 2010 - At home

Deb at home today after her discharge from hospital


Yesterday Deb saw a Dr Roberts who confirmed she would be discharged today (Sunday). The nurses removed the large bandage to leave a smaller dressing just covering her head wound. The discharge letter was written and signed so all that had to be done today was to pick up her medication and leave.

I arrived about 11:30 but although all medication had been obtained from the pharmacy, we still had to wait an hour and a half for a doctor to sign the labels on the medicine to say it was correct. Why is it so difficult to get out of hospital? You would think they would want the bed available as soon as possible. I understand that some responsible person has to check that the drugs are correct before they are issued but you would think that a staff nurse or somebody on the ward could do that.

Deb is still on 16mg of dexamethazone per day. Over the next few days this dose will be reduced to 2mg per day (12mg for 3 days, 8mg for 3 days, 4mg for 3 days). Deb has also been prescribed the anti-convulsant drug Phenytoin to be taken each day before going to bed. All other medication continues as before.

Her scalp clips are due to come out 10 days after the operation. (They sent her home with a special tool to do this - something like an office staple remover). The GP practice could do the removal but as we are at the hospital on Monday 2 August to see Dr Sanghera, Deb will go back to the ward and the nurses there will do it.

Mr Kay will see Deb as an outpatient in 6 weeks time.

It was good to have Deb home again. She slept most of the afternoon and has promised that she will take it easy for the next week or two. She says she does not have a headache but the hospital have given her some extra strength codeine as well as paracetamol and told her to take these regularly.

Time for us all to rest and recover I think. My love to friends and family that have sent messages of support over the last week. Thank you all.

23 July 2010 - QE Hospital

Deb with her bandage - today - 24 hours after her operation - taken with Sam's IPhone

I went to see Deb this afternoon (Kate also turned up having been given the afternoon off work ) and then during the evening visiting with Sam & Kate. All Deb's tubes have been removed including the catheter. She had got up and has been walking to the toilet.

Mr Kay had visited and was pleased with her progress. He told her if everything went well she would be discharged on Sunday. Fred, Clinical Nurse Specialist had also been to see her. He said they would let things settle down for a week and arrange for Doctor Sanghera, Oncologist, to see Deb in his clinic on 2 August. Deb had been wrong about her new dosage of steroid; she is in fact having 4mg, 4 times a day ie 16mg in total. This was the same amount they started her on when she was first diagnosed. This high level will only carry on for a short while and will be reviewed at the appointments with Dr Sanghera. Fred is hopeful she may be able to get off them altogether.

Tomorrow the nurses on the ward will change her bandage. the new one will be a lot smaller. She is very red in the face but her temperature is normal. This is a side effect from the steroids.

Deb said her head felt more compressed but her headache was not as bad. The nurses had stopped giving her morphine and she was now only on paracetamol. She did feel very tired. She has not slept much for 2 days. It is not helped by the man in the next bed continuously talking to himself. If possible they will move Deb to a quieter ward tonight.

She looks good doesn't she?

22 July 2010 - QE Hospital (Evening)

The hospital called at about 3:30pm to say that Deb was out of theatre and everything had gone well. Sam, Kate and I arrived at the hospital about 4:00. Deb was sitting up in bed looking very well. She was not in the Critical Care Unit but back on Ward East Lower B in an observation unit. She had a large bandage round her head and was being given oxygen from a tube to her nose but was sitting up smiling. She was coherent and apart from some confusion over the length of time she had been in surgery (about 5.5 hours) was talking sense. She had been fitted with a catheter but all of the other lines had been removed (they had not used the central line into her jugular.)

While we were there Mr Kay, the surgeon came in. He emphasised how well the operation had gone. He had removed as much of the tumour as he could and inserted the gliadel wafers. He wanted Deb to get up tomorrow and thought she may be able to go home after 2 or 3 days. She should see her GP about getting the staples removed from her head.

Deb was given some oral morphine for a headache. We left after about an hour so she could sleep. I plan to call in after work tomorrow morning.

I feel very relieved. This is really good outcome. Mr Kay may feel that the operation was routine but to be awake and smiling after 5 hours on a table with someone cutting lumps out of your brain seems marvellous to me.