Wednesday, 21 July 2010
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.
Tuesday, 20 July 2010
20 July 2010 - QE Hospital
The day before Deb goes into the QE for her craniotomy. We visited the hospital today for Deb to have an MRI scan and have blood tests carried out prior to her surgery. The scan results will be used by the surgeon Mr Kay to pinpoint the precise area in the brain he needs to remove (computer assisted stereotactic surgery). Deb has to ring at noon tomorrow to see if there is a bed available. She will then be admitted and the operation carried out on Thursday.
As you can imagine we are all a bit tense. (No more than a bit tense - bloody worried I think just about covers it). But we have all been heartened by the love and support from all of our friends and family. If good wishes count for anything then Deb will sail through this operation.
Thank you all. As you know I do not believe in a divine power but I do have faith in Mr Kay. Here's hoping his years of training and practise, knowledge of medicine and the structures of the brain and the wealth of experience he has gained from carrying out similar operations are all used to good effect on Thursday. I will try to update the blog daily over the next week or so.
Chris
As you can imagine we are all a bit tense. (No more than a bit tense - bloody worried I think just about covers it). But we have all been heartened by the love and support from all of our friends and family. If good wishes count for anything then Deb will sail through this operation.
Thank you all. As you know I do not believe in a divine power but I do have faith in Mr Kay. Here's hoping his years of training and practise, knowledge of medicine and the structures of the brain and the wealth of experience he has gained from carrying out similar operations are all used to good effect on Thursday. I will try to update the blog daily over the next week or so.
Chris
16 July 2010 - Seafront, Scarborough
Deb and Sam on the day of his graduation from University of Hull at Scarborough
Tuesday, 29 June 2010
29th June 2010 - Meeting with Mr Kay, Neurosurgeon, QE Hospital
Mr Kay started by asking Deb what she understood the current position to be. Deb explained that she thought, following the review of her case at the Multidisciplinary Team Meeting last Tuesday, Mr Kay was to re-examine the MRI scans and make a decision as to whether surgery was an option. Mr Kay said that it wasn't quite like that. He would take us through the scans, describe what could be done and then Deb had to make the decision.
The Scan showed not only the grade IV parts of the tumour we had been looking at previously, but also some further high grade areas in other parts of the tumour (this was new information to us). Mr Kay showed us what part of the tumour he could remove and explained that he would insert Gliadel Wafers into the cavity left by the tumour. If we went ahead he would scan Deb next week and operate the week after. He said the decision needed to be made now. If no action was taken the tumour would look dramatically worse in a month or so and surgery would no longer be an option. He said this was a serious situation and options were limited. Deb was between "a rock and a hard place".
Mr Kay described the risks associated with Brain surgery. The tumour is close to major blood vessels and nerves and in the worst case Deb could lose speech, movement or bladder control (that's nothing new!!). He emphasised these risks were very low. He was not worried about the operation but more concerned about the effects of the Gliadel Wafers which could react with the brain. Also the wafers would be close to the ventricles in the brain which contain cerebral
fluid. If the chemotherapy leaked into this fluid it would be of concern.
The positive factors for carrying out the operation were that the tumour is in the non-dominant side of Deb's brain. Deb is young and has responded well to the Temozolomide and there are other chemotherapy treatments that could be used when the tumour re-occurs.
Mr Kay expects the operation to last about 4 hours if everything goes well. Deb would spend 5 days in hospital. She would have a scary haircut and a big scar. During the operation, and for a time afterwards her steroid dose would go up but hopefully this would be reduced back to her current level. In fact, the operation should improve the steroid position and Deb may be able to get off them altogether.
To reach the tumour Mr Kay would have to go through healthy parts of the brain but he did not consider this to be a problem.
Deb has seen Mr Kay twice before to discuss surgery. On both occasions he has said it was not a good option. I asked him what made it better now. He said that at the current time it was the
best way of dealing with tumour progression and was an effective method of delivering high doses of chemotherapy direct to the tumour site.
Deb has considered the position and decided to go ahead with the operation. The only drawback is that the proposed date clashes with Sam's graduation so Deb will discuss with Claire, Clinical Nurse Specialist if there are any issues with delaying it for a week.
The Scan showed not only the grade IV parts of the tumour we had been looking at previously, but also some further high grade areas in other parts of the tumour (this was new information to us). Mr Kay showed us what part of the tumour he could remove and explained that he would insert Gliadel Wafers into the cavity left by the tumour. If we went ahead he would scan Deb next week and operate the week after. He said the decision needed to be made now. If no action was taken the tumour would look dramatically worse in a month or so and surgery would no longer be an option. He said this was a serious situation and options were limited. Deb was between "a rock and a hard place".
Mr Kay described the risks associated with Brain surgery. The tumour is close to major blood vessels and nerves and in the worst case Deb could lose speech, movement or bladder control (that's nothing new!!). He emphasised these risks were very low. He was not worried about the operation but more concerned about the effects of the Gliadel Wafers which could react with the brain. Also the wafers would be close to the ventricles in the brain which contain cerebral
fluid. If the chemotherapy leaked into this fluid it would be of concern.
The positive factors for carrying out the operation were that the tumour is in the non-dominant side of Deb's brain. Deb is young and has responded well to the Temozolomide and there are other chemotherapy treatments that could be used when the tumour re-occurs.
Mr Kay expects the operation to last about 4 hours if everything goes well. Deb would spend 5 days in hospital. She would have a scary haircut and a big scar. During the operation, and for a time afterwards her steroid dose would go up but hopefully this would be reduced back to her current level. In fact, the operation should improve the steroid position and Deb may be able to get off them altogether.
To reach the tumour Mr Kay would have to go through healthy parts of the brain but he did not consider this to be a problem.
Deb has seen Mr Kay twice before to discuss surgery. On both occasions he has said it was not a good option. I asked him what made it better now. He said that at the current time it was the
best way of dealing with tumour progression and was an effective method of delivering high doses of chemotherapy direct to the tumour site.
Deb has considered the position and decided to go ahead with the operation. The only drawback is that the proposed date clashes with Sam's graduation so Deb will discuss with Claire, Clinical Nurse Specialist if there are any issues with delaying it for a week.
Tuesday, 22 June 2010
22 June 2010 - Phone call from Claire Goddard, Clinical Nurse Specialist
Claire called to discuss what was said at the MDT Meeting. The imagining results were reviewed. It was agreed that although the lower grade components of the tumour had remained the same size, there have been subtle changes to the higher grade areas of the tumour. The meeting had discussed surgery as an option for further treatment. Mr Kay, the Neurosurgeon we have seen previously, said he needed to study the scan results in detail to decide whether surgery was feasible. If so, he would remove as much of the tumour as he could and insert Gliadel Wafers in the part of the tumour he could not remove.
Wafer implants are a new way of giving chemotherapy for brain tumours. The wafer is made of gel that contains the chemotherapy drug. During brain surgery, the doctor places up to 8 wafers in the space where the tumour was. Over the next few days, the wafers slowly release a chemotherapy drug called carmustine (BCNU) into this area. The wafers dissolve within 2-3 weeks after being put in.
If Mr Kay says surgery is a possible option, Deb has to make the decision that she wants to proceed. Not an easy decision!!!!
Wafer implants are a new way of giving chemotherapy for brain tumours. The wafer is made of gel that contains the chemotherapy drug. During brain surgery, the doctor places up to 8 wafers in the space where the tumour was. Over the next few days, the wafers slowly release a chemotherapy drug called carmustine (BCNU) into this area. The wafers dissolve within 2-3 weeks after being put in.
If Mr Kay says surgery is a possible option, Deb has to make the decision that she wants to proceed. Not an easy decision!!!!
21 June 2010 - Appointment at Queen Elizabeth Hospital
Sorry I have not updated the blog for a while. Since the last post Deb has seen Dr Sanghera for a routine appointment (24th May) and has continued with the continuous chemotherapy. During this time Deb has had an increasing number of dizzy spells and bouts of feeling sick. She has also suffered from a number of headaches.
On the 18th June Deb had the 10th MRI scan of her tumour since her radiotherapy treatment.
The scan took place at the New Queen Elizabeth Hospital Birmingham. The new scanner was twice as powerful as the old scanner (3 tesla - a unit of magnetic flux density - instead of 1.5).
Deb saw Dr Sanghera and Claire Goddard (Clinical Nurse Specialist) on Monday 21st June at the 'old' QE to have blood tests and get the results of the scan. The results of the blood tests were good with all readings within the normal range. The results of the scan were not so good. The low grade parts of the tumour had stayed the same size but the higher grade elements (ie the white patches on the screen) had progressed. Dr Sanghera had measured the relevant parts of the tumour and although growth was slow it was still occurring. This news was disappointing as it meant that the tumour was not responding to the resumed chemotherapy treatment as hoped.
Dr Sanghera said Deb's case would be discussed at the Multidisciplinary Team Meeting tomorrow (Tuesday 22nd June) to get a second opinion on the scan findings and to consider further options including surgery and a change to the chemotherapy regime. (The most likely option is PCV which consists of 3 different drugs - Procarbazine/Lomustine(CCNU)/Vincristine. One of these drugs is delivered intravenously and all can have significant side effects including lower blood cell counts, feeling and being sick, flu like symptoms and CNS effects (ie depression, anxiety).
Claire is to ring tomorrow after the meeting to tell us what was discussed. If it is decided not to make a change, Deb is to continue with the temozolomide for a further month and Dr Sanghera prescribed more tablets. Next scan is due in 2 months time.
This meeting was different from previous meetings we have had with Dr Sanghera. Normally they are light-hearted and informal. This meeting was different; the tone was sombre and serious. This as much as what was said made us realise that the options are running out.
On the 18th June Deb had the 10th MRI scan of her tumour since her radiotherapy treatment.
The scan took place at the New Queen Elizabeth Hospital Birmingham. The new scanner was twice as powerful as the old scanner (3 tesla - a unit of magnetic flux density - instead of 1.5).
Deb saw Dr Sanghera and Claire Goddard (Clinical Nurse Specialist) on Monday 21st June at the 'old' QE to have blood tests and get the results of the scan. The results of the blood tests were good with all readings within the normal range. The results of the scan were not so good. The low grade parts of the tumour had stayed the same size but the higher grade elements (ie the white patches on the screen) had progressed. Dr Sanghera had measured the relevant parts of the tumour and although growth was slow it was still occurring. This news was disappointing as it meant that the tumour was not responding to the resumed chemotherapy treatment as hoped.
Dr Sanghera said Deb's case would be discussed at the Multidisciplinary Team Meeting tomorrow (Tuesday 22nd June) to get a second opinion on the scan findings and to consider further options including surgery and a change to the chemotherapy regime. (The most likely option is PCV which consists of 3 different drugs - Procarbazine/Lomustine(CCNU)/Vincristine. One of these drugs is delivered intravenously and all can have significant side effects including lower blood cell counts, feeling and being sick, flu like symptoms and CNS effects (ie depression, anxiety).
Claire is to ring tomorrow after the meeting to tell us what was discussed. If it is decided not to make a change, Deb is to continue with the temozolomide for a further month and Dr Sanghera prescribed more tablets. Next scan is due in 2 months time.
This meeting was different from previous meetings we have had with Dr Sanghera. Normally they are light-hearted and informal. This meeting was different; the tone was sombre and serious. This as much as what was said made us realise that the options are running out.
Monday, 26 April 2010
26 April 2010 - Appointment at QE Hospital
On 15 April, Deb had the 9th MRI scan of her tumour since her radiotherapy treatment. This was about 2 months since the last scan (9 February) and 6 weeks since Deb stopped her chemotherapy treatment. We again saw Dr Sanghera, Consultant Oncologist and Fred Berki, Clinical Nurse Specialist.
Scan Result
Dr Sanghera showed the result of the latest scan on the computer. The grade iv part of the tumour had definitely increased in size. It was difficult to judge by exactly how much the tumour had grown but you could definitely see that the bright, active part of the tumour was bigger. This was not good news. I asked about prognosis and Dr Sanghera said we should not worry about that yet. This result should not stop us doing anything we wanted to do. I think he meant it in a positive way. That although there had been a deterioration in the tumour we should not let that put us off doing anything we wanted to do. But to me it sounded like he was saying you should do it now because you might not get a chance to later. Fred could see I was concerned that things were worse than they were letting on and said that they would not hide anything from us and would tell if the news was really bad. At the moment the news was not really bad; just not good.
Deb and I both felt cast down by this news. (Deb had been so well lately, and with the reduction in her steroids she seemed to be slowly returning to something like her old self).
Chemotherapy
Because of the progression of the cancer, Dr Sanghera decided to put Deb back on to her chemotherapy (temozolomide). She will return to her previous regime of a continuous daily dose of 100mg. Deb had her blood tested and the results were good and the chemotherapy will start immediately.
Steroids
Over the last 6 weeks, Deb has reduced her steroid dosage from 1 mg per day of dexamethasone to 0.4 mg. It was agreed that Deb will stay on the current level and not reduce any further.
The next appointment to see Dr Sanghera is in one month on 24 May (the day after the second anniversary of Deb's diagnosis). Deb's next scan will be in 2 months time.
Scan Result
Dr Sanghera showed the result of the latest scan on the computer. The grade iv part of the tumour had definitely increased in size. It was difficult to judge by exactly how much the tumour had grown but you could definitely see that the bright, active part of the tumour was bigger. This was not good news. I asked about prognosis and Dr Sanghera said we should not worry about that yet. This result should not stop us doing anything we wanted to do. I think he meant it in a positive way. That although there had been a deterioration in the tumour we should not let that put us off doing anything we wanted to do. But to me it sounded like he was saying you should do it now because you might not get a chance to later. Fred could see I was concerned that things were worse than they were letting on and said that they would not hide anything from us and would tell if the news was really bad. At the moment the news was not really bad; just not good.
Deb and I both felt cast down by this news. (Deb had been so well lately, and with the reduction in her steroids she seemed to be slowly returning to something like her old self).
Chemotherapy
Because of the progression of the cancer, Dr Sanghera decided to put Deb back on to her chemotherapy (temozolomide). She will return to her previous regime of a continuous daily dose of 100mg. Deb had her blood tested and the results were good and the chemotherapy will start immediately.
Steroids
Over the last 6 weeks, Deb has reduced her steroid dosage from 1 mg per day of dexamethasone to 0.4 mg. It was agreed that Deb will stay on the current level and not reduce any further.
The next appointment to see Dr Sanghera is in one month on 24 May (the day after the second anniversary of Deb's diagnosis). Deb's next scan will be in 2 months time.
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