10 December - At Home

Flowers from the floral tribute on Deb's coffin

I guess this will be my last blog post. It is only just over 3 weeks since Deb died but already we are now in a different world. Before everything seemed purposeful and permanent; now it seems I've set up temporary camp in my own home. 

Anyway I just wanted to thank everyone who attended the funeral and for all your kind donations to the Brain Tumour Charity. The amount collected so far:

          Cash at the funeral:                   £731.00

          Cheques:                                   £200.00

          Donations to JustGiving page  £569.79      

          TOTAL                                     £1500.79

Thanks to all of you who have been with me over the last 10 years. To those that I know and to those who I don't but have just dropped in to read  what I had to say. Thanks to you all.

THE END

27 November 2018 - At home

The funeral director's have now set up an obituary web page. It has a link if you wish to make a donation to the Brain Tumour Charity and details of the funeral. If you wish you can also upload your photos of Deb.

The link is:
Deb's Obituary Page

20/11/2018 - Home

Bert at the foot of Deb's bed

Today we were able to confirm the arrangements for Deb's funeral. We visited the funeral directors this morning, who were very helpful and put us at ease.

Deb's funeral will take place at: 

Sutton Coldfield Crematorium
Tamworth Road
Sutton Coldfield
West Midlands
B75 6LG

Website

The service will take place on Tuesday 04/12/18 from 1-2pm.

After the service a funeral reception will be held at:

The Royal Hotel
High Street
Sutton Coldfield
B72 1UD

Website

This will take place between 2:30 and 6pm.

Deb requested that people do not send flowers but instead make a donation to The Brain Tumour Charity. A donation page is to be set up by the funeral directors and I will post the link when it is available, a cash box for donations will also be available at the funeral.

Deb will be laid out at the funeral home next week and people are able to pay their respects at any time between 9-5, although we do not know the specific days yet and will update as soon as we do.

The funeral home is located at:

The Co-Operative Funeralcare
30 Boldmere Road
Sutton Coldfield
B73 5TD

Website

The funeral directors is a short walk from our house but parking near there can be difficult. Feel free to park with us and we will walk you down.

I will update with any further information as soon as I have it.

17 November 2018 - At HomeDeb

Deb in India shortly before the diagnosis of her brain tumour

Deb died at 20 minutes past midnight this morning.

As deaths go this was as good as we could ask for. Deb was at home, in no pain and surrounded by people who loved her and who she loved. In the days immediately before she died she was able to say goodbye to everyone and was grateful to be able to see all of her family. When Deb was diagnosed a decade ago we never imagined she would live this long and are grateful that she was with us as long as she was.

Around a week ago Deb began to deteriorate until she was bed ridden. During this period she became unable to feed herself, take tablets or anything orally. The carers began visiting four times a day to help take care of Deb and the district nurses began administering her medication via syringe drivers.

She was made comfortable and relaxed and it became obvious that the end was close. Last night her breathing became more laboured and eventually ceased. Sam, Kate and I were with her as she died and were able to say a final goodbye. District nurses came and verified Deb's death and the funeral directors arrived.

Throughout all of the posts I have written over the last 10 years you will see repeated mentions of various NHS staff. These staff have given us incredible support and guidance and we feel that Deb's treatment is a testament to the excellent service provided by the NHS. We were always treated with care and compassion and given the best support available.
I will update this blog with details of the funeral arrangements once we have organised them.

8 November 2018 - At home

Its not been a good week. On Monday we went to the QE to see Dr Sanghera. We had already cancelled the appointment once so that I could make arrangements with hospital transport to get Deb there. (A note for future reference: hospital transport is for the hale and hearty. If you are really ill don't use it. Get to the hospital some other way.)  The transport picked Deb up - she was in her own wheelchair - about 9.00 am for an appointment at 10.50. So we arrived at the hospital about an hour early. Dr Sanghera's clinic was running about 3/4 hour late. So we actually saw him at about 11.30. By this time Deb was getting very agitated both physically and mentally. After the meeting we then had to wait a further 2 hours before the transport arrived to take Deb home. This was too much time in a wheelchair for Deb and when she finally got home after five and a half hours she was exhausted.

The problem was compounded by the fact that Deb had started a bout of diarrhoea. Even if you are well diarrhoea can be very stressful; if you are seriously ill, cannot walk and wearing incontinence pads it is a nightmare. This lasted two or three days (and nights) but she now seems to be back on a even keel.

The visit with Dr Sanghera lasted about 10 minutes. We discussed how Deb had been following the radiotherapy, the steroid dose (it was decided to keep her on the same dose of 8 mg per day) and examined the back of her eyes. He said all of Debs symptoms could either be caused by the tumour or by the radiation form the radiotherapy and she still could improve.  Deb was due to have an MRI scan next week. This wasn't to be used as a guide to treatment - all treatment has now stopped - and was to be used a baseline for any further scans. Given the problems we had on Monday I have discussed the matter with the hospital and it has been agreed the scan is not necessary.

I think Deb has deteriorated slightly since my last post. She now has trouble gripping the fork in her left hand and I have to cut up her food. She is weaker and finds it increasingly more difficult to stand. I would say she now sleeps for more than 50% of the time.

Our application for NHS continuing healthcare is still slowly working its way through the system. We apparently have passed the first assessment and a second more detailed assessment is to take place next Thursday 15th. A multidisciplinary team meeting will take place at our house lasting about 2 hours. I have a 4 page form to fill in before the meeting. I have to provide appropriate seating for someone to take notes.

I am fit and well. A little tired at times. A little stressed at times. But I love my wife and will continue to take the best care of her I can.

24 October 2018 - At home

Deb and Kate at the dinner table

Sorry I haven't updated the blog sooner but there has been doesn't seem to have been enough time. Sam is home today and Kate is on her way so I have a little time to myself. (And I spend it writing this - quelle idiot - I should be outside walking the dog or sweeping up the leaves or something). Deb finished her radiotherapy on 12 October. The mask was still very tight for the last week but she managed to get through the last few sessions. On the last day the RT team gave Deb her mask as a farewell present. It now sits ominously in a corner of a spare bedroom. The RT left Deb very tired and even now nearly 2 weeks later she still sleeps for long periods during the day. It was a relief to finish the RT and not have to get up and out of the house early to make the trip  across Birmingham to the QE. However Deb was depressed after finishing the treatment. She felt that action was no longer being taken to stop the tumour. 

Some things that have happened since then:

1  Visit from NHS Occupational therapy/physiotherapy team. Their assessment was that Deb could eventually with assistance be able to get back up the stairs and have a shower. They arranged for grab rails and hand rails to be fitted to our stairs (all those holes drilled in our lovely walls!!) and fitted a rise and fall chair  in the bath to allow Deb to shower sitting down. The Physio has been visiting twice a week since then to get Deb to practice getting up and down the stairs. As yet she has not been successful and only managed 5 or 6 steps. 

2  The district nursing team are visiting twice a week. When Deb fell down the escalator she injured her leg. When the scab fell off  the wound looked a bit pussy so the district nurses have been coming in to change the dressing.

3   Visit from the community nurse from St Giles Hospice. She discussed what the hospice could provide (day respite care, overnight stay by carers to give me a break, palliative care). We need to contact them if we need any help. 

4  I have arranged for a a cleaner to come in once a week (Lucyna the cleaner). She is great and cleans most of the house (in particular both bathrooms) in 2 hours. 

5  Initially the Rapid Response team were visiting once a day to wash Deb. At first because of the radiotherapy this was at night but when that finished it was in the morning. This is a short term emergency service and after a week or two you have to replace it with your own arrangements. What they did was simple and straightforward; something I could easily do. And we could do it when we wanted (not wait around all morning) and without the disruption of strangers barging into your house and taking over (it was different carers every day). So they no longer come and I do the washing.

6 The District Nurse carried out a Continuing Health Care Assessment. If we score enough points on this it will mean that most of Deb's treatment including much of her social care needs will be deemed to medical and therefore paid for by the NHS. As I understand the system the initial assessment is carried out by the district nurse. If we get through that hoop we then have a further in depth assessment before the results are passed to a committee who make the final decision. The process should take about a month.

7  I have now moved to online shopping. A surprisingly relaxed way of getting your groceries. I should have done it before.

8  Last Monday I awoke at 6 am to find that Deb had tried to get out of bed on her own and fallen to the floor. I couldn't get her back up on my own and rang 999. The ambulance crew were very good and just lifted Deb back into bed. They spent another 1/2 hour checking her over to make sure she hadn't fallen because of a heart attack or a stroke and then another 1/2 hour filling in paperwork. 

9 Last week end I tried to get Deb into the car. We manged the transfer to the wheel chair, and to get over the steps by the front door (NHS physio is to provide ramps) but couldn't manage to get from the wheelchair into the car. This would mean that I could not get Deb to the hospital. Yesterday Deb was due to see Dr Sanghera. I therefore contacted the hospital and after discussion the appointment was cancelled. Deb's next visit to the hospital will now be for an MRI scan and we are still waiting for a date. 

That's all for now. Will try to update regularly.  

8 October 2018 - Room 11, Radiotherapy Department, Cancer Centre, Old QEH

Deb in her hospital bed in our back lounge

Deb started her fourth and final week of radiotherapy today. Sam came with us on the visit today. A side effect of the steroids is to cause Deb's face to swell up. The face mask that she has to wear to secure her to the table during RT has therefore become tighter and tighter. The RT staff have made some adjustments but they are limited in what they can do and still retain accurate positioning for the radiation treatment. Because of the tightness of the mask Deb felt she couldn't breath and again the treatment had to be stopped to give her time to recover.

We saw Dr Sanghera after RT treatment. He said that if the mask became too tight to carry on we could have another mask made. Deb said she only had 4 sessions of RT to go and she would try and finish them using the existing mask. We discussed how Deb had been over the past week. Following the increase in steroids last weekend Deb has not had any headaches or other significant effects from the tumour. However she continues to be very tired and weak. I guess she sleeps about 50% of the time. We are now living fully downstairs, although Deb did go upstairs once during the week to have a shower. We will see Dr Sanghera in 2 weeks time. Next MRI scan to take place in 4 to 6 weeks.

 It has been a busy week. Here are some of my notes:

2/10 - RT am. Visit from Emma District Nursing Team. Checked Deb - bed sores dry skin etc. Carried out assessment. Need: hospital bed, mobile commode, slide sheet, pads, personal care ( arrange for rapid response team to visit to wash Deb), will arrange assessment by OT and physio team. Phone call from Lindsey St Giles Hospice - visit next week for assessment.. Visit in evening from Rapid response team.

3/10 - RT am. Visit from RR team in evening - changed Deb and put her to bed - no wash.

4/10 - RT pm. Bed and other equipment delivered.Deb had shower in morning. RR team no wash. Cherry and Martin made dinner in evening.

5/10 - Visit from Liz and Chris. GP Dr Garbutt made house call - discussed end of live plan. Social services called will visit next week ( this lot will take over from RR team.). RT pm + Liz and Chris. All appointments next week in morning 8.45 or 9.  Visit from Occupational/Physio Therapy team. They thought with additional equipment Deb could get upstairs for showering. They will provide - bed levers, zimmer frame, perching stool, bath lift, handrail + grab rails. All should be installed by the end of the week. RR team. Sam home for weekend.

6/10 - Deb very tired. Most of day in bed. RR team

7/17 - Dinner provided by Jenny and Patrick. RR team

The radiotherapy is getting more and more difficult for Deb. The trip to the hospital itself is a bit of an ordeal. The tiredness caused by the treatment, and particularly the tightness of the mask are both significant issues for Deb. Still only 4  more sessions left and it is all over. Will post again soon

1 October 2018 - Room 11, Radiotherapy Department, Cancer Centre, Old QEH

The start of Deb's third week of radiotherapy. This last week has seen a further deterioration in Deb's condition. A week ago Deb managed to get into RT just using her walking stick. Now the only way I can  get her in is by wheelchair transfer from the car.

This is a copy of notes I made for the week:

24/9/18 - Headache am on first day reducing steroids to 6mg
25/9/18 - am: disturbance in field of vision RH eye.
26/9/18 - pm: unable to climb upstairs fell onto knees near top. Disturbance in field of vision LH eye.
27/9/18 - Headache am. Collapsed coming downstairs. First day of 4mg steroids.
28/9/18 - Headache am. Panic attack in RT machine. GP recommends increase of steroids back to 8mg per day.
29/9/18 - Bed moved downstairs.

After RT we saw Dr Sanghera. We discussed steroid dose and Debs continuing decline. He agreed steroid dose could remain at 8 mg and that radiotherapy would continue.

Because of the continuing problems with Deb's mobility, particularly going up and down stairs, we saw our GP, Dr Garbutt last Monday. he said he would arrange for the District Nurse team to visit this week and carry out an assessment and would also refer us to  St Giles Hospice who would provide advice and support. They never showed up. So I went back to the surgery on Friday. Dr Garbutt said he had made the referral, promised he would chase it up and they would visit early next week. Had phone calls today from District nurse team and St Giles. Clinical nurse specialist will be visiting tomorrow.

Last week we did have a visit from Ralsten Du'Quesnay, Birmingham City Council Speacialist Care Services, Occupational Therapy Assessor. He did say before he started the assessment that even if he did recommend something it could take up to a year to be delivered. Also he could only assess Deb as she was on that day. The fact that she is deteriorating week to week couldn't be taken into account and if things changed we would have to let him know and he would come in and revise his assessment. After looking all round the house and getting Deb to do some tasks (including going up stairs), he recommended downstairs living. But as we had a toilet downstairs and running water they would not provide anything additional. A waste of time. To be fair to him he was carrying out a social needs assessment and Deb's needs are healthcare related.

Lets see what the next week brings. I just want to thank all family and friends who have provided continuing support at this time. Its not just the physical support (feeding us, walking the dog, helping to move furniture) but in particular the emotional support. A caring voice at the end of the telephone or a friendly face calling in  for a chat or an offer of help from someone unexpected. Thank you all.

24 September 2018 - Room 11 Radiotherapy Department, Cancer Centre, QEH

The start of Deb's second week of radiotherapy. She has declined markedly over the last few weeks. In particular she has muscle weakness. This is more pronounced on her left side and in her upper legs. She has great difficulty getting up and down stairs, (after the escalator incident I get very worried about her falling), can not get out of the chair unaided, struggles getting in and out of bed and whenever sitting slumps to her left hand side. I do not think the decline is due to the radiotherapy but rather the tumour progression affecting the brain. (The tumour is in the RHS frontal lobe - the RHS of the brain controls the LHS of the body). Her cognitive function is also more impaired. (Deb doesn't know what day of the week it is, cannot do simple sums etc).

During the week, after discussion with Fred Berki, Deb's steroid dose was increased from 4 to 8 mg per day. This made her brighter and more alert but did little to improve her muscle weakness.

Today we struggled into RT, we took the wheelchair but in the end Deb thought she could walk with just the use of her stick and afterwards saw Dr Sanghera and Claire. This was the first time Dr Sanghera had seen Deb since her escalator fall and he was concerned to discover why that had happened. We discussed Deb's condition. Dr Sanghera said that one of the effects of increasing the steroid dose could be muscle weakness and suggested we slowly reduced the dose back to 4mg. Deb might be more tired but she may have better mobility (Deb is also showing some signs of face swelling (moon face) which is a side effect of steroid usage.) We will keep the steroid dose under review and may need to increase again if Deb starts having headaches or other symptoms caused by the tumour. We will see Dr S again in a week's time.

I have also contacted Birmingham City Council and arranged for them to carry out a social care assessment. Hopefully they will be coming later this week.

17 September 2018 - Room 11, Radiotherapy Department, Cancer Centre, QEH

Radiotherapy treatment room

Deb's first radiotherapy treatment was scheduled for 2 pm this afternoon. We first saw a senior technician who took us into a side room to explain what was going to happen. He said the whole process would only take about 5 minutes. Deb would first be scanned by a CT scanner (built into the machine) and the results would be compared to the scan used when preparing the mask to ensure Deb was accurately positioned on the table.The radiography would then be carried out to a preplanned schedule during which the head of the machine would rotate around Deb on the table. This would take 3 or 4 minutes.  

The equipment in the treatment room was ultra modern and looked liked something out of Star Trek. The room was bathed in a soft blue light and crisscrossed by bright green lasers to provide accurate positioning.I left then before they switched on the radiation beams.

Deb said she noticed no ill effects from the treatment but I suppose it is early days yet. We return tomorrow at 9.00 in the morning.

06 September 2018 - At Home

Deb in bed this morning showing off her black eye

Yesterday Deb and I were in Sutton Coldfield shopping. Whilst riding up the escalator in M&S Deb lost her balance and fell. She went head over heels before sliding face down on the moving escalator. We spent the rest of the day  at Good Hope Hospital A&E. Fortunately Deb did not break anything but suffered extensive cuts and bruising to her face, body and legs. We got home about 10.30 last night. This morning she is stiff and tired and has spent most of the day in bed. It was a shocking accident to witness and we are extremely lucky that she did not have any major injuries. We are going to use the lift in future.

30 August 2018 - Radiotherapy Department, Cancer Centre, Old QE Hospital

Deb having her mask made - the red lines are the laser to ensure accurate positioning on the table

Visit to the Cancer Centre to have the preliminary work carried out in order for Deb to have her radiotherapy. This included having a mask made to ensure her head is accurately located during RT and a CT scan (while Deb is in the mask) which is used by the consultant to pinpoint where to target the radiation.

Deb also had a further blood test. Her platelet count was about the same as last week. We discussed the results with Fred Berki, who came to see us while we were in the RT waiting area. Fred thought the results were OK but he would discuss them with Dr Sanghera to see if any further blood tests would be required.  

The mask of Deb's head is made in the Mould Room. With Deb lying on a replica of the table used in the RT, the technicians  first made a headrest out of a material which can be moulded when first mixed with water but then sets hard. To make the mask, they  put a flat screen of mesh material into a hot water bath to make it pliable  and then stretch it over Deb's head and clip it to the table as shown in the photo. Deb and the mask were accurately positioned using a pair of lasers. Deb then had to lie perfectly still for 15 minutes while the mask set hard.

Deb's first radiotherapy session is on 17 September. Complete treatment is 20 sessions over the next 4 weeks.

23 August 2018 - Neurosciences Outpatients Dept, QE Hospital

Deb with Kate's new dog

Meeting with Dr Sanghera (oncology consultant) and Fred Berki (CNS) to discuss future treatment for Deb's tumour. 

On Tuesday this week a multi disciplinary team (MDT) meeting had been held when Deb's case was considered. The main options discussed were surgery and radiotherapy. The opinion of Mr Kay, the Neurosurgeon, and the rest of the meeting was that surgery was not a good option and the best way forward was a course of radiotherapy. It was felt that because of the time that had elapsed since the last treatment the brain had had a chance to recover from the original radiotherapy and further treatment at a lower dose would be appropriate. Dr Sanghera considered that the radiotherapy was best carried out now while Deb was still relatively well and could withstand the treatment. He did stress the possible side effects - tiredness, hair loss, cognitive disruption - and made sure Deb was entirely happy with proceeding.

Deb agreed to this course of action and signed a consent form.

The next step is for Deb to visit the hospital next week to have a CT scan which is used to provide information to target the radiation accurately and to have a mask made of her head. The mask is used to restrain Deb's head during radiotherapy so the gamma rays are accurately targeted. The radiotherapy will likely start the following week i.e. the first week in September and will consist of 40 sessions over 4 weeks. The effects of the radiotherapy are cumulative and as treatment progresses Deb is likely to feel very tired which could continue for 2 or 3 weeks after treatment ends. We will be contacted with the exact dates in the near future.

Deb had another blood test and the platelet count was 59. This was a slight improvement on the previous count. Dr Sanghera thought that Deb did not need a blood transfusion but would monitor her platelet count again on her next visit to the hospital.

We also discussed how Deb was responding to the lower dose of steroids. Deb (and I) had noticed a deterioration in her since the reduction and it was agreed that the dose would be returned to the  previous level (4mg).

I have now known Dr Sanghera, Fred and Claire for 10 years. We have seen them approaching 150 times. They are friends as well as professional medical staff. At this visit they were both very kind and supportive. They are good people.

20 August 2018 - Cancer Centre, Old QE Hospital

Deb in her wheelchair on Brighton seafront

Visit to Cancer Centre for a meeting with Dr Sanghera. Also present Dr Allos (registrar) and Fred Berki (CNS).

Dr Sanghera explained that the latest scan results indicate that the chemotherapy is not proving very effective in stopping tumour growth. In addition the chemo was affecting Deb's blood cell production and in particular her platelet count was very low (normal range is 150 to 400. Deb's count today was 47. Below 30 action has to be taken to improve the count, usually by a blood transfusion.). Dr Sanghera therefore recommended that chemotherapy was stopped. 

He said we had various options: 

1) Do nothing and have another scan in one month's time. 

2) Have a second course of radiotherapy. This would be 20 sessions over 4 weeks at lower dose than  Deb's original radiotherapy. The first course of radiotherapy was given at the maximum dose it is thought the brain can tolerate and it is not common to give a second treatment. Dr S is recommending the treatment because it is 10 years since Deb was first treated, he thought she could tolerate the treatment and she would benefit from it.

The side effects from radiation to the head could include: hair loss in the area of the head that is being treated. tiredness, worsening of the brain tumour symptoms before they improve, sickness. There is also a risk of cognitive impairment. With a second treatment the risk of side effects is increased.

3) He could go back to Mr Kay and discuss surgery again.

He gave Deb a few days to go away and think about what she wanted to do and we are due to return to the hospital on Thursday 23 August. At that time Deb will also have a further blood test to see if the platelet count has improved. 

Deb was prescribed steroids (dexamethazone) at the last visit. In the time she has been taking them she has markedly improved. Her movement and posture has been better, her mental capacity and alertness has improved, she has slept less and ate more. Dr Sanghera explained this was a short term 'bounce' in improvement and as the tumour progressed higher doses of steroid would be required to keep the swelling around the tumour in check. In the mean time Deb will continue with the steroids although at a reduced dose (2mg a day instead of 4mg).

Deb has already decided she will proceed with the radiotherapy.

13 August 2018 - Cancer Centre, Old QE Hospital

Deb had her latest MRI scan (her 47th) on 21 July 2018. This scan was only 6 weeks after the previous scan. A shorter time period was decided upon to allow close monitoring of tumour growth. At the hospital we saw Dr Beshar Allos, registrar to Dr Sanghera who was on holiday.

Screen shots of Deb's scans are shown below. The MRI takes horizontal slices through the brain. The images are then shown reversed on the screen . So although Deb's tumour is in her RHS frontal lobe, it is shown on the left in the scans. In all cases the scan on the right of the picture is from 18 Feb 2018 and the latest scan (21 July) is on the left.

Photo1: Actual screen shot showing tumour growth. The white areas on the top LHS show where the tumour is actually growing.

Photo 2: Screen shot showing growth. I have marked where I think the tumour is. I may have got this wrong - a lot of the tumour is darker and not actually progressing at this time. But you can see growth over the last 6 months.

Photo 3: This is a screen shot of a different scan showing swelling around the tumour.

Photo 4: I have marked where I think the actual swelling is (fluid produced by the brain's reaction to the tumour). Again you can see that the amount of swelling has increased.

Dr Allos said that the radiologist's report on the latest scan indicated that there had been further tumour growth. This was less marked than the growth that had happened between the previous two scans. He said the changes were subtle and small and he said it was a difficult to decide whether to continue with the chemotherapy or change to another therapy (ie radiotherapy.).  Dr Allos thought that the decision as to how we should proceed should best be made by Dr Sanghera and suggested we did nothing for a week and returned next Monday when  Dr Sanghera would be back. We therefore made arrangements to return on 20 August at 12.50.

We discussed how Deb had been over the past couple of months. I read from my list. I thought there had been significant deterioration. In particular: Deb had more difficulty in walking; she now always used a stick. We have borrowed a wheelchair and use this for any distance over about 50 yards. She slumps to her left when sitting and this is more pronounced. Often she has trouble getting up and down stairs. Her writing is often illegible and she has had periods when she is not aware of what is going on. She has difficulty with some simple tasks. She sleeps a lot more etc etc.

Dr Allos thought these symptoms may be a result of the increased swelling in the brain caused by the tumour. Because the brain is encased within the skull any swelling will squeeze the brain within the cranium and could cause a variety of symptoms. He has put Deb back onto steroids (dexamethazone, 4mg per day) to see if this reduces the swelling and improves her condition.

2 July 2018 - Cancer Centre, Old QE Hospital

Deb having coffee at the Oasis Beach cafe, Weymouth, June 2018

On 21 June, Deb had another MRI scan (her 46th) to monitor what was happening with the tumour. The results of this scan were important as Deb has now completed two cycles of chemo and the scan would measure the effectiveness of the PCV chemotherapy regime. The visit today to the Cancer Centre was to get the results of this scan and also for Deb to have more blood tests before starting her 3rd cycle of chemo.

We saw Dr Allos, a doctor we have not seen before and briefly Dr Sanghera. We discussed how Deb had been during the last cycle of chemo. Her problems included severe constipation (this time they have given Deb some powerful laxatives to combat this), the deterioration in her balance and walking and her general muscle weakness.

We also discussed the scan. The radiologists report indicated that there had been some tumour growth. However Dr Sanghera and Dr Allos were of the opinion that if there were changes they were very subtle and growth is very slow. We looked at the scan and compared it with the scan 3 months ago. On some of the 'slices' the tumour did appear slightly larger but on others it seemed not to have changed. The decision was to continue with the PCV and to have another scan after 6 weeks (that's about the beginning of August). If that scan still shows tumour progression it will indicate that the chemo is not very effective and other treatment options will have to be considered - most likely more radiotherapy, 

I liked Dr Allos. He spoke simply and directly and answered all questions. Deb's blood tests results were ok and tomorrow we visit the chemotherapy unit  so she can start her third cycle of PCV.

22 May 2018 - Ward 621, Out-patients Oncology/Haematology Unit, QE Hospital

Deb and Kate in Monmouth 

Visit to start Deb'as second cycle of the PCV chemotherapy. Yesterday we saw Dr Sanghera at the Cancer Centre. Deb had her blood analysed and the results were within the normal range. Since the last visit to the hospital Deb has been largely in good health. She has had some headaches and tiredness but on the whole she has been well and positive about life. She enjoyed our weekend in a cottage in Monmouth with the children and their partners and the meal out with the women in her family to celebrate her birthday. 

The procedure at the hospital with the chemotherapy was the same as with the first cycle. Turn up at 2 pm wait 2 hours, answer a lot of questions and start the chemo at 4. After picking up the the other parts of the chemotherapy from the pharmacy we got home about 6. As yet Deb has not been sick and all is going well.

The Chemotherapy Unit was as chaotic as at the last visit. I think the trouble is that it is not managed. If it is the manager is not on site. Nobody sets the tone and as a result it is set by the nurses. It is great for them but it seems to me the Unit is lax and not focused on its task. 

Deb has to take the second part of the chemo tonight and then 10 days of the third part, all in tablet form. She will have another scan in a about a month's time before seeing Dr Sanghera and starting the next cycle.

23 April 2018 - Cancer Centre, Old QE Hospital

From 10 to 20 April, Deb completed her first course of the PCV chemotherapy. This was not as bad as expected but she was still sick a few times and very tired. This visit we saw Dr Sanghera and Claire, CNS. It was a short meeting for Dr Sanghera to review how Deb had got on. He said that she should not have to suffer being sick on this treatment and should take more anti sickness medication next time. Next visit to the hospital is on May 21 to see Dr Sanghera before Deb starts her next course of chemo on the 22nd.

10 April 2018 - Ward 621, Out-patients Oncology/Haematology Unit, QE Hospital

Deb having her Vincristine chemotherapy 

Visit to start Deb's chemotherapy. We got to the hospital at 1.15 for a 1.30 appointment. OK we then waited an hour or so but that's fine; there were a lot of people having chemotherapy. Deb was then called in to the unit and is prepared by the nurse - lots of questions, hands warmed up and cannula inserted. We spoke about what happened yesterday and that Deb is expecting to leave the hospital with some antibiotics. This worried the nurse who wandered off to see Mark the registrar who was consulted yesterday. They now decide to take more bloods from Deb (which were the same as yesterday) and decide that Deb needs a chest x ray. So we have to go down to the ground floor imaging department and wait 45 minutes for an x ray (the results are fine). By the time we get back to the chemo unit it is 4.30 and chemo can start. 

2 things annoyed me about this visit:

1) I know they have to be cautious but the registrar made a decision based on the information he had yesterday. Nothing has changed but he now decides he needs a chest x ray. Why couldn't he just make a decision and stick by it. He did look about 21 and had a distinct lack of facial hair.

2) I expected the nurses to be more focused on what they were doing The bag containing Deb's chemotherapy had a notice on it saying 'Fatal if not taken intravenously'. Despite this the nurse wandered off, had chats to friends, went off to do other jobs. I know they do this all day and every day but these are dangerous drugs. They sent us home with two more lots of chemotherapy. The nurse was decidedly woolly as to when to take everything - anti-sickness, chemotherapy, antibiotics, laxatives, more anti sickness. Come on NHS these drugs are cytotoxic.

9 April 2018 - Ward 621 Out-patients Oncology/Haematology Unit, QE Hospital

View from 6th floor QE Hospital

The visit today was for Deb to have a 'new patient' assessment prior to starting chemotherapy. Over the past few weeks, well actually since the start of the year, Deb has not been very well. She has had a cough which keeps her awake at night, has been very tired (perhaps because of the not sleeping with the cough), weak and her balance has not been good. Last week we went to the GP's surgery 3 times because they were worried Deb had some sort of infection. The GP thought that Deb should not start her chemotherapy. However when I rang the hospital they said Deb should come in for the assessment and a decision would be made then as to whether chemo should start.

We were seen by a chemotherapy nurse Megan. She told Deb what the PCV treatment involved and the possible side effects (that took about half an hour and included risk of infection, anaemia, feeling sick, tiredness, hair loss etc etc.). She took blood from Deb which was then tested. The test results were ok. Throughout the meeting Deb was coughing. Megan went to consult a doctor as to whether Deb should start the chemo the next day. The doctor said she should but he would prescribe some antibiotics which Deb should take if her temperature went up above 38 or she showed any other signs of infection (diarrhoea, vomiting etc.) So the PCV chemotherapy starts tomorrow. Each cycle lasts 42 days and Deb has been booked in for 6 cycles. The dates are shown below:

Date	Start Time	Treatment
Mon 09 Apr 18	15:00	PCV attenuated (v6)
Tue 10 Apr 18	13:30	PCV attenuated (v6)
Tue 22 May 18	14:00	PCV attenuated (v6)
Tue 03 Jul 18	12:45	PCV attenuated (v6)
Tue 14 Aug 18	12:00	PCV attenuated (v6)
Tue 25 Sep 18	12:00	PCV attenuated (v6)
Tue 06 Nov 18	12:00	PCV attenuated (v6)

To put it mildly, Deb is not looking forward to this treatment. It is not helped by the fact that she already feels unwell even before anything has started. But hopefully after 9 months without any treatment, the chemo will do something to slow tumour growth.

26 March 2018 - Cancer Centre, Old QE Hospital

Deb and I celebrating our 35th Wedding Anniversary

Following Deb's decision not to have surgery, we had a meeting today with Dr Sanghera. The new CNS, Will was also present.

We briefly discussed Deb's decision not to have the operation. Dr Sanghera said that in his opinion we should still consider intervention. Because the Temozolomide chemotherapy had not proved as effective as he would have liked last time, Dr Sanghera suggested Deb should have PCV. This is a more aggressive chemotherapy consisting of 3 different chemotherapy drugs: procarbazine (P), lomustine (C - also known as CCNU) and vincristine (V) given on a 6 week cycle. The vincristine is given intraveneously at the hospital with the other 2 drugs are in tablet form. Deb has had PCV before in 2010/11 . The dose this time will be slightly lower. Deb will have 2 cycles and then have an MRI scan to monitor the effectiveness of the treatment. We will see Dr Sanghera again after the first cycle to see how everything is progressing. We wait for an appointment from the chemotherapy centre which is likely to be some time next week.

24 March 2018 - UPDATE

Deb has made her decision about surgery. She has decided NOT to have the operation to debaulk  the tumour. I agree with this decision - just look at the charts on the last post.

I telephoned the QE yesterday afternoon and told Claire, CNS Neurology, of Deb's decision. Today the hospital rang back to confirm that Deb had an appointment with Dr Sanghera in the Cancer Centre, the old QE at 10.30 Monday morning (26th). Will post again after that meeting.

20 March 2018 - Meeting with Mr Kay, Neurosurgeon, QE Hospital

Queen Elizabeth Hospital Outpatients Dept.

This was a very bleak meeting with Mr Kay, Neurosurgeon and Claire, CNS. Mr Kay started by asking Deb what she understood the current position to be. She responded by explaining that following the last meeting with Dr Sanghera, we were here to discuss surgery as an option for treatment.  Mr Kay went on to discuss the risks of surgery. As for the first operation the tumour is close to the ventricles (which contain cerebral fluid) and other important structures in the brain and therefore all of the tumour could not be removed. Mr Kay stressed that because this was a second operation the postoperative risks were higher and these may include problems with the wound healing, a build up of fluid and inflammation of the brain (encephalitis) and a real risk of Deb not being mobile and spending her last months in hospital. He also said that the operation would not improve Deb's current condition, it would give in his words 'local disease control'. by that I think he means by removing some of the active tumour it will slow it down and give you a bit more time.

Chart showing possible outcomes from operation

Mr Kay drew a chart like this showing the possible outcomes from the operation.

Blue line - best outcome - Deb's condition remains as now for a time before declining.

Yellow line - no operation - Deb's condition gradually declines with time but she has a longer relatively good quality of life.

Red line - possible outcome from operation - Deb has post op complications and declines rapidly. Her life expectancy may be the same but her quality of life is poorer. 

Mr Kay said the decision was Deb's. He could not advise what to do. This was a decision where the positive and negative factors were equally balanced and it was up to Deb. I said that this was an impossible decision for Deb to make. I wanted more understanding of the benefits and downsides to make a pragmatic rational decision. Mr Kay said this was not a technical decision. It depended more on the type of person you were. Did you want more intervention and take the risk of possible complications or would you rather take the relatively good life you have now and run with it for as long as you can.

I said our decision is coloured by what happened last time. Deb had the operation followed by chemotherapy and 8 years of good quality life later is still here. Mr Kay said that Deb's longevity was not because of the operation and showed us this chart which we have seen before.

% of people who have survived with GBM v. survival time in months

The graph shows that 60 months (5 years ) after diagnosis only 2% of people with GBM are still alive. This graph only goes up to 5 years, Deb is off the scale. The reason for that is unknown it is a combination of the type of GBM Deb has and the way it has responded to chemo/radiotherapy. The operation just debaulked the tumour and did not effect growth rates.

Claire said we should go away and make the decision about surgery in the next few days. They will of course implement whatever decision Deb takes. If Deb does not go ahead with surgery there is still radiotherapy and/or chemotherapy to be considered. 

Below is a copy of Claire's notes about the meeting:

Tomorrow is my 70th birthday. I am glad we cancelled the party, I don't think we would have been much fun. Sam and Kate are here for the weekend. We will have a family discussion and Deb will decide what she will do. 

12 March 2018 - Cancer Centre, Old QE Hospital

Deb today after visit to hospital

Met with Dr Sanghera to discuss results of the scan Deb had on 23 February (her 45th) and possible future treatment.

We discussed how Deb had been feeling since the last appointment. Then Deb had decided to do nothing for 2 months as she was asymptomatic. It was felt that she could have a break for a couple of months feeling well before the treatment started. However for most of the time since Christmas Deb has been unwell. First she had the flu with a persistent cough and sickness. One night I woke up to find her limp and unresponsive in bed. The GP came out the next day and after tests said it was the flu and not the tumour. After feeling sick for weeks Deb then started to be sick. I mean being violently sick without warning. I mean just sitting up in bed and spewing all over the duvet cover. For about a week she could not eat anything without bringing it straight back up. The GP said this could be a bad infection or it could be due to the tumour and prescribed steroids (dexamethazone) to reduce any swelling in the brain.  Deb eventually managed to keep some of this down and the sickness gradually subsided. Throughout the 2 months Deb has been weak, often having difficulty getting up and down stairs and also very dizzy. (GP thought this may be due to her low blood pressure).

Dr Sanghera examined the backs of Deb's eyes (ok). We reviewed the latest scan. It is difficult to quantify but you could see significant signs of tumour progression. The tumour is located in apart of the brain (right frontal lobe) which can accommodate significant growth before symptoms are apparent but Dr Sanghera thought that the inability of Deb to deal with her infections, her increased dizziness and the sickness could all be due to the tumour. At the current rate of growth Dr Sanghera thought that without treatment Deb would experience significant symptoms in 3 to 6 months. These may be increasing headaches, dizziness and sickness.

Dr Sanghera thought that there were 4 options for treatment:

1.    Do nothing again and monitor tumour progress. Not really an option in my opinion.

2    Start chemotherapy (PCV). Dr Sanghera was not very enthusiastic about this option. If patients do not respond well to temozolomide ( and Deb hadn't this time) then typically they did not respond well to PCV (10 - 20% chance of slowing tumour growth).

3.    Surgery to remove mass from the tumour.

4.    Radiotherapy. As it is 10 years since Deb's last course of radiotherapy, this could be repeated. 

Dr Sanghera's view was that surgery may well be the best option. After that we could look at other options to deal with the remainder of the tumour, perhaps radiotherapy and/or chemotherapy.

As a next step we will discuss the surgery option with Mr Kay the brain surgeon and we wait for an appointment date. 

We were unsettled by the new direction. We had gone to the hospital expecting to start chemo and came out thinking about surgery. It is also disconcerting that last time we discussed surgery with Mr Kay he did not think it was appropriate as Deb was well. This time Dr Sanghera is saying surgery is appropriate because Deb is still well and could tolerate the operation better. We shall see what My Kay has to say.

15 January 2018 - Cancer Centre, Old QE Hospital, Birmingham

The visit today was to review Deb's treatment options following the multi-disciplinary team meeting on 9 January. Kate came with us to the meeting and we saw Dr Sanghera, consultant oncologist and Claire, Clinical Nurse Specialist.

Dr Sanghera gave feedback on the discussion at the MDT which mainly concerned whether surgery was appropriate at this time. The surgeon, Mr Kay, felt that, as Deb was still so well and essentially asymptomatic from the tumour, surgery, with all its concomitant dangers and possible side effects was an unnecessary risk at this time especially when there were no clear cut benefits to be derived from the operation. Surgery may well still be considered at a later time.

Dr Sanghera gave us 3 options:

1     Do nothing. Scan again in 2 months. Tumour growth does not appear to be rapid but we have limited data at present and a further scan would give us the opportunity to better judge exactly the pace of tumour development.

2     Resume chemotherapy with temozolomide and scan in 2 months. Although temozolomide did not prove very effective last time, Deb does tolerate the drug very well and it may have some effect in slowing tumour growth.

3 Start PCV chemotherapy immediately. This combination of drugs is more toxic than temozolomide and will have more significant effects on Deb's immune system and bone marrow.

After discussion, Deb chose the do nothing for 2 months option.

There is a risk that in waiting 2 months Deb will develop some symptoms from the tumour. These could be headaches, tiredness, nausea or dizziness.

We also discussed radiotherapy. Dr Sangera said this was still a possibility but it would be the treatment of last resort. RT is a very aggressive and causes damage to parts of the brain around the tumour.

So we do nothing and Deb will have another scan in 2 months from her last scan ie end of February.

9 January 2018 - BRIEF UPDATE

We were contacted this afternoon by Will (a clinical nurse specialist like Claire and Fred) following the MDT meeting. Deb's case was discussed but outcome of discussions not straightforward. Dr Sanghera wants Deb to go in either this week of early next week to discuss the options available to her. Dr Sanghera or his secretary will call us tomorrow to arrange a time. From what Will said it does not look like surgery is being considered. I don't know what other options there are other than more chemotherapy. Will update again when there is more news. 

4 January 2018 - Neurosciences Outpatients Department, QE Hospital

Today's visit was to review the results of Deb's MRI Scan on 30th December 2017 (her 44th)

THE SCAN RESULT WAS BAD NEWS!

The tumours had progressed.  The growth is slow but is happening,  We discussed three options with Dr Sanghera.

Option 1

Do nothing and have another scan in 2 months time.  Deb is well at the moment and tumour growth is slow and we could wait a couple of months before starting treatment.  During this time Deb could consider the course of action she wanted to follow.  However, we feel this just delays the decision and we will consider the other options now.

Option 2

Start Chemotherapy again. Dr Sanghera was particularly disappointed that the tumours had started to grow so soon after stopping Chemotherapy.  This demonstrated that the last course of chemo. was not as effective as when first used. The  new chemotherapy treatment would involve PCV.  Deb has had this previously.  PCV is a combination of 3 drugs, one of which is administered intravenously in hospital.  It is an older chemotherapy drug and more aggressive than Temozolomide.

Option 3

Surgery. Another brain operation to remove as much of the tumours as possible.

Deb's case will be discussed at the Multi-disciplinary Team Meeting (MDT) on Tuesday 9th, Dr Sanghera, Mr Kay (Surgeon) and the Radiologist will be present at the meeting.

The CNS Nurse will contact us on Tuesday afternoon to let us know the outcome of the meeting. I will post again then.

This was very disappointing news for us.  In the that past, Dr Sanghera has always given us the best advice and Deb will be guided by him.