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.