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.

22 July 2010 - QE Hospital (Morning)

As I write this -2:15pm on Thursday 22 August - Deb is still in theatre. I have just rung the Critical Care Unit to see if she was back from surgery and was told no and to ring back in a couple of hours. I need something to do to fill the time.

I arrived at the hospital at about 08:15 this morning. During the night she had seen the SHO (I guy called Lawrence who went to school with Adam Darcy. I don't know what's worse the fact that he is the same age as our son or that he is a friend of Adam's). He arranged for the cross matching of blood. In the morning, before I arrived Deb had seen the Registrar and had signed another consent form. On the form under the heading 'Name of Procedure' it said 'brain lab guided craniectomy and debaulking of SOL (?) + insertion of gliadel wafers'. He had told Deb that they hope to remove about 90% of the tumour. Under the heading 'Risks' the form said 'infection, hemorrhage, stroke, wound breakdown, CSF leak, failure of insertion of gliadel wafers.'

Deb had been given a dose of 4mg of steroids (dexamethazone; her previous dose was 0.4mg) and given 4 anti-epileptic tablets. While I was there the anaesthetist for the operation arrived. She seemed thorough and was concerned that Deb was taking beta blockers to prevent heart palpitations. She said they would have to contact Good Hope Hospital to establish what the heart problem was before they could operate. She also said: 1) Deb will go into the Critical Care Unit after the operation. 2) Deb will have a catheter inserted so she would not have to get up for the toilet after the operation. 3)They would put a special line into her arm to continuously measure her blood pressure (there can be severe swings of blood pressure during brain surgery) 4) They would probably put a line into the jugular vein in her neck to monitor blood fluids. 5) That when Deb wakes up she will feel serious pressure pain in her head (for this they will give her morphine) and 'moderate' pain from the skull wound.

We also met a nurse who introduced herself as the first person Deb would see when see came round. Deb had another ECG (we guess this was because they had not been able to get any sense out of Good Hope and they just wanted to check before starting the operation). At about 10:10 they took her into theatre. I kissed her and said I would see her later and watched as she was pushed through double doors with a notice saying 'no public admittance past this point'.

Will write more later.

21 July 2010 - QE Hospital

OK not much to tell. Deb rang the hospital at 12 and was told she didn't need to come in until 7.30 pm. So we had another afternoon at home - walked the dog in the park, had a pizza - that sort of thing. Deb was admitted to the hospital in the evening. She is in Ward East Lower B, in a four bedded room. Not a good view - brick walls and air conditioning units. As usual for hospital it seemed very hot and stuffy. A nurse filled in the forms, took her blood pressure, temperature etc. The Senior House Officer will be round later to see Deb and maybe take some blood to cross match for the operation tomorrow. I will return to the hospital in the morning so I am there when Mr Kay sees Deb about 08:30 tomorrow. Deb was looking good when I left, drinking a cup of tea.