Beginning
We are still waiting. Deb was diagnosed with the brain tumour on the 23 May. Here we are on the 24 July and still we have not started treatment. This is what has happened so far:
November 08: Deb started having headaches and feeling dizzy. As you would when you are 49, she thought it was something to do with the menopause. But in February this year she had a bad migraine with bars of light in her field of vision. Fortunately she went to the doctor about this. Our own GP was not available and instead she saw Dr Garbutt a doctor new to our practise. Although he did not think it was much he referred her to a neurologist; Dr G Mazibrada Good Hope Hospital, on 12 April 08. Dr M thought the headaches were due to stress but (and for this we must be very grateful) he did arrange for Deb to have a CT scan of her brain.
30 April 08: CT Scan at Good Hope. By 14 May still no results so Deb contacted Dr Mazibrada’s secretary by telephone. She said he hadn't looked at the scan yet but would see it the following day.
15 May 08: Received a message on our home answer machine from the MRI dept asking Deb to call to make an appointment. Also Deb spoke to Dr Mazibrada’s secretary who read a letter to her over the telephone informing her that there was 'a slight abnormality to the right hand side of my brain' and she needed to book for MRI.
20 May 08: MRI scan at Good Hope, 11:30am. That same day (after having been for the scan) received a letter received from Dr Mazibrada confirming CT scan indicated ‘slight abnormality on right hand side of brain’.
23 May 08: DEB'S 49TH BIRTHDAY. We had arranged to go away for the weekend walking the Yorkshire Dales but before we left we had a phone call from Dr M’s secretary asking Deb to report to A&E at Good Hope where a doctor briefed on her case and would carry out further tests. Attended A&E where no one knew anything about Deb’s case. Doctor at A&E (Dr Duckworth) thought Deb was presenting at A&E with headaches and talked about prescribing paracetamol. Eventually Dr Duckworth found Debs file and after much time returned to tell us that Deb had a brain tumour in right forebrain, size 6cm by 8 cm. She stated that Deb would initially be admitted to Good Hope but would later be transferred to the Queen Elizabeth Hospital, Birmingham who would carry out the treatment.
23 May 08: Deb admitted to Good Hope Emergency Assessment Unit. Eventually told by Dr D that there would be no transfer to QE. Neurosurgical team would meet on Tuesday 27 May at QE to discuss Deb’s case and we would be informed of the outcome on that day. Deb could not go home because she needed to be monitored in a place of safety and it would be easier to transfer from GH to QE. Children Sam and Kate informed who immediately made their way home. Deb was started on a steroid to remove swelling in the brain. The steroid is dexamethasone. The initial dose is 8 x 2 mg tablets.
24 May 08: Transferred to Good Hope Ward 10. Good support from staff nurses on Ward – Diane and Wendy. Deb had a chest X ray to ascertain whether the brain tumour was primary or a metastasis (secondary tumour) from a tumour elsewhere in the body. (Lung tumours are the most common source of metastasis to the brain). Unfortunately a woman on the ward was taken ill during the night and died and Deb had to sit in the day room during this period for the relatives to be with the deceased. This was a very distressing and disturbing experience for her.
25 May 08: Told by hospital staff Deb could not come home. (Typing this 2 months later, when treatment has still not started, not letting Deb return home seems even more ridiculous than it did at the time) We disobeyed the hospital instruction and come home anyway for breakfast. Returned in afternoon. (This action demonstrated my emotional state at the time. Never before in my life have I disobeyed an instruction given by a health care professional).
27 May 08: Meeting (pm) at QE to discuss Deb’s case. Dr Smith Consultant at Good Hope had ward round in morning. Charged junior doctor with her to: 1) Contact Dr Mazibrada and ensure that he visited Deb to explain situation (Dr M had clinic at GH that day) 2) Ring QE get results of case conference and tell Deb. Neither of theses things happened. At 16:15 asked junior doctor who was on the ward what was happening. She said she had been trying to get hold of neurosurgical department at QE for half an hour but the doctor was not answering her bleep. She said she would try again and come back to us. About 17:00 junior doctor said we would not be told today. She could not get hold of anyone. I asked for name of doctor she was calling and phone number. She told me his name was Dr Chima and she did not have his phone number – she was going through QE switchboard. Rang QE (01214721311) and was put through to on call neurosurgical registrar a Dr Kuruvath. He told me he was not involved in Deb’s case but he would find out what he could and ring me back in 10 minutes. He did. I asked if I could come over to QE and speak to him face to face. He agreed.
27 May 08: Saw Dr Kuruvath at QE Hospital Ward East Ground Floor A. He said he was pleased to be able to talk to me so he could reassure me about my wife’s treatment. He said there was an area of abnormality in the right frontal lobe. This was most probably a tumour but could be something else, for example an infection. Deb’s case had been discussed at the meeting; nothing was unsure and things were in hand. A biopsy would take place – most probably within a few days –which would be a small incision into the brain and the removal of a small amount of tissue. Before this happened we would be told exactly what was involved and the risks of the procedure. We would then have to wait 5 to 6 days for the results which would tell us what type of tumour and would enable QE to decided proper course of treatment. I asked about results of x ray. He did not know. (I don’t think he knew an X ray had been taken.) After biopsy Deb would be admitted to QE when a bed was available. Many people across West Midlands waiting to be admitted. (10 with tumours). Talked about location of tumour. Asked if Deb was right handed – therefore LHS of brain would be dominant. Frontal lobe not crucial to functioning. Some people with traumatic head injuries have part of frontal lobe removed and still function normally (???).
I said that he had promised to reassure me and so far he had not done that. What could he say to reassure me. He said. I should be positive because 1) We know about the tumour. Many people present with a fit or seizure or unconsciousness. We have found this tumour before Deb’s symptoms are severe. 2) The case had been reviewed and a plan was in place. QE was a centre of excellence for brain surgery and Deb was in good hands. He said that the neurosurgeon dealing with Deb’s case was Dr Andrew Kay. Fred Berki, the nurse specialist for brain tumours, would be contacting Dr Mazibrada’s team at GH and someone would be telling Deb tomorrow what was decided at the meeting. Returned to GH and passed on information to Deb and kids
28 May 08 Following my meeting with Dr Kuruvath, we expected the QE hospital to contact Dr Mazibrada at Good Hope 'first thing in the morning' and someone from his team to visit Deb and explain the outcome of the case conference. By midday this still had not happened. The nurses on the ward at Good Hope asked Dr Solani, Registrar to talk to us. He told us that no one from the QE had been in touch. We asked about the results of the scan and the chest X ray and he said he could show us. He took us to the nurses work station on the ward and brought up on the monitor the results of Deb's scan. The tumour looked very large and you could see where it had grown from the RHS of the forebrain and pushed into the LHS. The membrane separating the two halves of the brain was significantly displaced. Dr Solani explained that the white area we were looking at on the scan was not all tumour - some of it was natural structures within the brain. He also showed us the chest X ray. Thankfully it was clear confirming that the tumour was most probably a primary tumour. Soon after showing us the scans Dr Solani returned to say QE had contacted them. Arrangements had been made for us to see Mr Kay, Consultant Neurosurgeon at his clinic on Tuesday 3 June and Deb could be discharged.
03 June 08: Meeting with Mr Kay, Consultant Neurosurgeon, Queen Elizabeth Hospital. Mr Kay made the following comments on the results of the CT/MRI scans. He thought that most of the tumour was slow growing and had been there for a long time (a number of years). The tumour appears to be mainly benign but parts of it have recently changed to a malignant form. The malignant, more active areas can be seen during the injection of the dye during the scans. The active areas 'light up' with the dye. In Deb's tumour there are only small 'light spots'. The tumour did not 'glow in the dark' but only had small areas of increased activity. The active spots has meant that we have to move from just watching the tumour to treatment and a biopsy would have to be carried out to identify the type of tumour. He stated that the tumour was intrinsic to the brain i.e. had formed from a cell within the brain and because of its position 'surgery was not an attractive option'. Treatment would be by radio/chemotherapy. The biopsy would be carried out on 19 June 08 which is the earliest available date. The results from the biopsy have to go to the laboratory and be properly analysed so the results are not likely to be available until a further 2 weeks after the biopsy. He could give no information on the long term prognosis until the results of the biopsy were known. He suggested that Debs current dose of steroids be reduced to 2 x 2 mg tablets. Mr Kay thought that the tumour was a primary and it was extremely rare for brain tumours to spread to other parts of the body. For the biopsy a frame would be fixed to Deb's head and she would then be scanned within the frame to enable exact location for a stereotactic (= precise location of particular brain structures by 3-dimensional survey) biopsy. There were some risks associated with the biopsy but these were small. He thought that at present there were no MASS EFFECT from the tumour.
Deb and I were disappointed by the news that the tumour was not operable and had malignant active areas. We now have to wait 2 weeks for the biopsy and then a further 2 weeks before we get the results.
04 June 08: Dr Garbutt made a home visit to see Deb. He was very supportive and gave Deb scripts for steroids and sleeping tablets. He gave a positive spin to what Mr Kay had said. He will give me a sick note for 1 month giving 'Anxiety State' as the reason for being off work. I think that is just about right
