Medical Details

Andrew E Lander Stow

Blood Pressure and Pulse
Date
Time
Systolic
Diastolic
Pulse
Ramipril Taken?
1/05/14
08.30
136
82
64
x
22.30
131
79
74
2/5/14
22.30
127
80
65
x
3/5/14
08.45
124
79
71
x
22.00
135
79
68
4/5/14
22.15
123
83
72
x
5/5/14
22.30
142
89
63
x
6/5/14
08.00
141
84
69
x
22.00
132
89
62
x
7/5/14
07.00
133
83
66
x
22.00
123
80
70
8/5/14
08.15
130
84
70
x
10.15
122
80
74
9/5/14
07.10
134
85
66
x
10/5/14
09.00
129
77
67
x
23.40
135
86
71
11/5/14
09.15
127
82
68
x
22.15
119
77
67
12/5/14
07.00
133
84
67
x
10.35
118
84
73
13/5/14
07.30
131
80
64
x
22.00
123
83
75
14/5/14
06.55
133
80
68
x
22.30
132
83
65
15/5/14
08.15
128
81
66
x
22.30
123
82
68
16/5/14
08.45
130
83
63
x
22.30
124
79
71
17/5/14
07.00
131
84
68
x
22.30
134
83
71
18/5/14
22.00
126
80
79
x
19/5/14
06.00
125
88
65
x
22.00
125
79
67
20/5/14
09.00
129
87
67
x
23.00
123
82
71
21/5/14
07.40
126
85
69
x
22.15
130
83
70
22/5/14
07.10
137
91
61
?x
22.45
145
90
68
23/5/14
05.30
138
86
71
x
22.40
140
88
70
24/5/14
08.00
145
90
66
5mg Ramipril
12.00
108
72
67
5mg too much then!
22.00
132
81
69
25/5/14
07.15
128
83
65
x
09.00
130
87
71
12.30
132
86
80
22.40
133
83
71
26/5/14
07.15
124
86
66
x
22.30
133
81
70
27/5/14
07.15
130
87
69
x
22.30
131
83
72
28/5/14
07.15
133
89
69
x
23.45
125
85
67
29/5/14
22.00
127
84
76
x
30/5/14
08.00
120
84
71
x
31/5/14
IN HOSPITAL WITH MILD INFECTION
3/6/14
23.30
131
94
77
x
4/6/14
07.30
124
87
87
x
 
23.30
134
87
70
5/6/14
07.45
122
83
76
x
22.30
129
86
73
6/6/14
08.00
134
89
70
x
22.30
121
84
83
7/6/14
07.00
128
88
74
x
8/6/14
22.00
135
86
91
x
10/6/14
17.09
111
82
98
x
22.00
125
89
74
11/6/14
07.15
133
90
74
x
22.50
149
87
76
12/6/14
08.00
135
89
79
x
13/6/14
07.52
145
94
73
x
14/6/14
22.45
128
84
79
x
15/6/14
08.00
124
89
78
x
23.01
130
83
72
16/6/14
06.30
126
82
76
x
I have reduced the readings so that it only shows 1 month instead of 2 months.

Notes regarding above table...

When I lost my rag with taking pills I was unhappy with, I stopped taking any pills for two days. This involved a journey to see Devon Doctors on Good Friday (18th April) and changing the Ranitidine for Omeprazole and Phenotoin for Keppra.

I stopped taking either Ranitidine or Omeprazole and haven't taken them at all.

The Keppra is 250mg and states that you should take a 250mg pill for 1 week and then increase to 500mg. I had a meeting with Dr Steve Kelley, the Oncologist Head Doc at Derriford Hospital, on Thursday 24th April, and he said that there is no reason to increase the Keppra to 500mg as he is not expecting me to have a fit. He also confirmed that the Dexamethasone - I'm taking 1 x 2mg at 6am and 12noon, total 4mg per day - can be increased if I lose words or decreased if I go a bit Hyper. Both of these pills will stop at the end of the Radio and Chemo Therapy.

I am expecting an appointment this week (28th April - 2nd May) to make a facemask and have a CT scan to check and set up the RadioTherapy 2 weeks later.

I am not taking any Ramipril but I would like to get the Eustachian Tube cleared up in my right ear. To that end I've reordered the Flixonase Nasule Drops at 400mcg.

1/5/14

Popped a vein in my left eye. Possibly due to aftershave balm input 2 days ago?

 

Sunday 4th May 2014

Loosing the will to sleep now! My sleep depravation is caused by too many factors and to that end I've stopped taking the Keppra Levetiracetam as Dr Kelly said I didn't need to increase it from 250 to 500 as it said on the packet as he didn't think I would "Fit". Stopping it completely seemed like a good option.

5th May

Still the 2.5hrs sleep and realised that it was my brain deciding to have a deep think at 2am for a few hours. Not that I mind this too much but I wish it would leave me alone sometimes and bugger off.

6th May

Oncology to have the facemask made - see HERE for laugh

I tried to get in touch with Tony Shute (our Neuro Oncology Nurse) but to no avail as he seemed to be out or busy or on hols. I need confirmation that I can reduce the dexamethasone. 2 x 2mg is too much and not allowing my brain to switch off. the Keppra Levetiracetam didn't touch me - it's supposed to knock one out from what I understand? The option of taking two 2mg steroids at 5am didn't work as it still fires me up for more than 24 hours. I need to drop the steroids to one per day and see if I get more sleep.

7th May

I slept from 11.30pm to 4am which is the best I've managed so far. No sleep during the day and a late night into bed but wide awake at 4. I'll try and get a chat with Tony Shute today.

Got a phone call from Tony this afternoon and he said it is OK to drop to one Dexamethasone until Radiotherapy time. This is good news but quickly followed by better news.....

Colin, from Oncology rang about an hour later...The initial appointment for the therapy is next Friday (9thMay) at 12 noon with 3 appointments..

1) Consultation withDr S Kelly

2) Start of treatment review

3) Onset verification

They should take approximately 90 mins.

Then the Radiotherapy kicks off at 09.10 on Monday 12th May. It will end on the 17th June...the day before I fly off for a 5 day break in Switzerland. Fantastic news and perhaps tonight I will get more than 4 hours sleep.

8th May 2014

Crap night and feel knackered this morning. I'll leave it at 1 Dexamethasone for another night.

9th May 2014

Whey hey! I slept from 22.30 to 03.15. Then I went back to sleep, almost straight away, until 06.05. Wow! I'll bet Dr Kelly tells me to boot it back up to 2 x "Dexo-I-hate-you" pills when I'm in Oncology at noon.

10th May 2014

He's told me to restart the Keppra but only one per day. I'll need more. I also have to watch/hear how I feel when the chemo and radio therapy starts on Monday as I may have to jam the dexamethasone up to two per day. It's on one at the moment though!

Woke up at 04.00 but managed to doze for several hours. Not really satisfactory but better than it was on 2 Dexamethasones.

11th May 2014

Wow! I'm back on the 1 Dex-I-hate-you and 1 Keppra. I slept until 6am, took the Dex and went back to sleep until 9am. Fabulous.

12th May 2014

Not such a good night but 10.30 to 4am then 5.30 to 7 so 7 hours of sleep. Radiotherapy and Chemo today.

13th May 2014

A good day with Radiotherapy. Over very quickly and moved on to Chemo drugs. Not nice and a slight cock up when I didn't get any food in me quick enough to stop my stomach playing up until food was consumed.

I take the Temozolomide - 150mg - 2hrs after food but 1 hour before Radiotherapy and food. Then I have 2 stomach settling drugs - Domperidone, the simple but weaker tummy drug & Ondansetron which causes constipation (should come with a warm spoon) and inhibits the effect of neuro-transmitting serotonin. I don't like the thought of either so I'll be getting the food right to combat the gut wobbles. I've done well so far so I hope to be able to carry it on.

I saw Dr Cope tonight and we spoke about sleep or extreme lack of it. He prescribed Temazepam and suggested I took one between 8pm and 10pm and it should work OK without leaving me stupid in the morning. Hahahahaha, I took one at 8.15pm and I was upstairs. I could hardly get downstairs and fell asleep in my chair almost instantly. Perhaps it will work OK. Luckily tomorrow is a 15:36 appointment so I will have time for a nice sleep in the morning. It's also Bus Day tomorrow as Brenda is picking the kids up at 15:15 so she cannot take me to the Hospital.

Sam is at home, even if the Hospital didn't quite get her drugs right and first Brenda went back to get them and then Richard went in to get what was missing!

I also have to wash my hair daily - I've had my head nearly shaved so the Aqueous Cream can penetrate the skull skin - and I have to use Simple (non-chemical) soap so the skin is dry and the radiotherapy can work.

All is going well at the moment and I am grateful for all the help that Dr Cope, at the Ivybridge Health Centre, and all of the people at Oncology have done for me. Thank you!

14th May 2014

Not so good...

Took the Temazepam at 20:40 whilst upstairs and nearly fell asleep 5 minutes later going downstairs! Took it at the same time as I took the Keppra Levetiracetam. Sat downstairs and almost instantly went to sleep...for 30 minutes!

Went to bed at 22:00 and hoped for the best but woke at 01:00. Dozed until 05:00 and then was just awake until getting up at 06:30. I would suggest that those pills don't work on me which would be confirmed by the fact that Paracetamol, Morphine and other pills don't work on me either.

Can I take two or possibly three?

15th May 2014

2 sleeping pills worked well. I took them at 22.45 and slept through to 04.00. Then I went off again until 07.00. YIPPEE! I feel a bit shell shocked this morning but I expect that'll wear off quite quickly.

16th May 2014

Only took the one sleeping pill last night as I went to bed. It worked until 03.00! Back to two again tonight but a lay-in in the morning as I don't have to go and be radiated on Sat and Sun.

19/5/14

2 sleeping pills sort of work unless I start thinking when I wake up. Sounds daft but that's what happens. The weekend was full of joy as I had to take the Chemo drugs and Anti-Biotics. Downside is that the 1 x 2mg Dex-I-hate-you pill (steroid) is sending me a bit hyper over the weekend. I will talk to someone today (bus driver, useless passenger on bus to Asda, but Doctor Kelly - sounds like a better idea) to see if I can drop the bloody nasty thing at the weekends. Perhaps the Radiotherapy needs the steroid to work?

I also need to sort out the prescription Dr Kelly gives me. I have my blood checked on a Thursday, Dr Kelly inpsects it to see if there's a change on Friday,but he has to write a prescription out on Friday so I have the chemo pill for Monday. If he wrote a script out for 8 days, then he could write the next prescription out on Monday at my medical check point day! Easier for him and less time for me to waste in the Pharmacy.

19th May 2014

Had a Medical Review with Dr Kelly today and all is very good. He cannot write a prescription for more than 7 days but he's written 4 x 7 days so I can pick the prescription up anytime on the week before. This speeds things up a lot.

BEST NEWS so far? The Dexamethasone has been reduced to 1mg instead of 2mg. Doesn't sound much but it may allow me to calm down and sleep. This starts tomorrow as I have already taken the 2mg one today...yah boo sucks!

He's very happy with my first week and all of my blood check has been good so the drugs stay as they are.

The hour between the Temozolomide and Radiotherapy is OK if it's longer but not if it's shorter than an hour. I don't know why but I'm a happy bunny about that as it doesn't make the taking of the Temo so "cast in stone".

22nd May 2014

It's been a hard few days.

Dr Kelly allowed the reduction of the Dexamethasone to 1mg per day instead of 2 last Monday (19th May). This isn't immediate and as I'd already taken the 2mg one on Monday morning it's taken 3 days to reduce the effects. Consequentially, the sleeping tablets are working slightly better and I got 6 hours sleep last night. Yipppppeeeee!

Downside...increase in blood pressure possibly due to decrease in Dexamethasone which has also allowed my pulse to drop. I will carry on checking pressure and pulse, twice per day, over the next weekend.

24th May 2014

Had a good nights sleep utilising 2 x sleeping pills and the reduction in Dexamethasone to 1mg since last Tuesday. Downside is that the recent readings from the Blood Pressure machine indicate that my blood pressure is increasing back to where it was pre-operation. I've taken 1 x 5mg of Ramipril this morning to see what happens tonight and tomorrow morning. Downside is that it's "all you can drug yourself weekend"! Chemo pills + Anti-biotics + Dexo-I-Hate-You and now + Ramipril. I need to jump up and down to see if I've started to rattle?

26th May 2014

The taking of ramipril didn't do so well as you can see from the result on the list above! Too little pressure plus feeling a bit crap all weekend. No more Ramipril until the pressure stays a lot higher for longer!

Had a 30 minute late radiotherapy today but it is a Bank Hols so I'm surprised they did it at all. All sorted and a slightly better day today once I could eat after the R/therapy. This is harder to do when the appointment is at lunchtime as the Chemotherapy pills have to be taken 2hrs ofter food and 1hr before the R/therapy. Unfortunately, that one hour is wheh I can eat but haven't worked out how to stuff a sandwich through my facemask!

Subway (Plympton) to the rescue once again. I inhaled a 12" Subway BMT....I've had quite a few Subways "Subs" but I always have the same one! BMT wins hands down.

The next 4 appointments are all pre-9am so food and a quiet day should be easy.

We have a visit tomorrow (27th May) with Julie Pugh at 1pm.

28th May 2014

We had a good meeting with Julie Pugh after an early Radiotherapy.

29th May 2014

An early Radiotherapy followed by a blood taking session as my next two days have been re-timed so instead of before 9am they are both after 4pm! I had to have my blood checked so I can get next weeks prescription before Lloyds Pharmacy shuts on Friday.

The we had the 10pm meeting with Miss Anne Moore - Super-Duper Surgeon - and she's declared that I'm all signed off unless the Oncology Dept say I need more hacking open with a spoon. This would be after Oncology give me a CT scan 3 months (approx) after my Radiotherapy stops - 17th June '14.

I've very pleased with what she did for me and she reckons that it looks good. I was pondering whether to go in with a bit of Ketchup dripping down behind my ear? I decided that would be slightly too cruel towards her. Shame, 'cos I would have laughed!

DRUGS...

I still haven't managed to find one that relieves my stomach. The Domperidone doesn't have any effect so I'm now going to live off fruit! Well, it won't be that wild but the fruit increase will help and I'm going to have to desist from Onion and Beans. Shame, Beans and Sausages as well as a nice fresh Subway Roll were my favourites. They'll be on hold until my stomach starts to work properly again. It's probably the Chemo drugs that are sorting it out. I will ask the wonderful Dr Kelly about it at the Medical Review which is at 09.50 on Monday.

 

3rd & 4th June 2014

Ooops! Every weekend I have to take 8 anti-biotic pills, 4 per day. On top of this I'm still taking the Dexomethasone (1mg), Temozolomide (150mg) and the Keppra anti fit pill (250mg).

Sunday I felt so tired I couldn't get out of bed and the Devon Doctor was called. He checked me over and realised that I wasn't well and I had a small rash on my arms. He decided that the Ambulance should be called and he arranged for me to go straight into Trushel Ward.

So, a CT scan carried out quite quickly and a visit from Dr S Kelly, Oncology Boss the following morning, who decided there had been a good job done in Radiotherapy and he wanted me to put the daily Dex pill needed to go back to 2mg BUT he wanted me to take 4mg on Monday!

So last night I had so much time to sleep but decided to only use 10 minutes - between 03.15 and 03.25!

I was told that I was going to have an MRI scan today........and at 14.43 I'm still waiting. I've told the Dr at Clearbrook Ward that I will be going home at 5pm. If the MRI people can't do a scan today then they can do it some other day.

The really was no need for an MRI scan and I managed to get away from the hospital at 5.05pm.

At home I had a good chat with Dr Cope who OK'd me to take 3 or 4 Temazepan sleeping pills and 3 worked well with a night time starting at midnight and finishing at 06.00. This allowed me to snooze for an hour. I will try for 4 tonight as I do not need an early start for radiotherapy on Thursday and Friday - 14:24 & 13:36 appointments.

I changed the tummy pills from the Domperignone to Ondansetron which is only 4MG but allows me to take 2 per day spead out. This seems to have a better effect but I will need to make sure the diet is fibre rich. Unfortunately Beans (love them) and onions (even nicer) are not a good fibrous use!

The only problem I have not been able to face is the slight burning to my ears from the radiotherapy. My left ear gets it worse and I think the answer will be to get Voltarol 12hr Emugel or something similar. Doctors will be asked about this today.

3 black circles showing hair loss from Radiotherapy

Still 4th June 2014....

Feeling good up until now (12.42) and happy that my stomach hasn't gone on holiday again. Went to see Lloyds Pharmacy at Derriford and they suggested that Voltarol Emugel wasn't what I should use but E45 (no, I don't seem to be alergic to Lanolin) which is only £2.29 a tube. BARGAIN. I've used it at 10.30am and 2 hours later it seems to be OK. It might be time for a little snooze now though!

6th June 2014

Monday night in Hospital = 10 mins of sleep

Tuesday night at home = 6 hours using 3 sleeping pills but no snooze in the afternoon 'cos my brain wouldn't stop.

Wednesday night = 4 hours with 4 pills and a crap night......Dex dropped to 1mg from the 2 that Dr Kelly insisted on.

Thursday night = 4 hours with 3 and then another taken at 04.45 so I slept until 07.45. Feel second-hand so I think 4 would have been better. Need more pills as I only have 1 left.

Bowels moving well...they go wherever I go. This probably isn't what the answer means. I need some form of laxitive which doesn't involve a drill and wire brush, a spoon, or a goat gobbler. I would suggest a drinkable or edible one. The weekend will get worse for my bowels as the Anti-biotics are in full force for Sat and Sun.

7th June 2014

Took one sleeping tablet - Zopiclone 7.5mg - and got 3 hours sleep. Took second one and got 3 hrs sleep. Tonight we try 2 pills and if that doesn't work..3!

Weekend

Shite time had by me. Saturday reasonably OK but surrounded by work for idiots. The Sunday turned into the day where I wish I could have missed out. No hunger, No thirst, No interest.

Monday 9th, saw Dr Kelly and he said it is because the chemotherapy can cause my lungs to something horrible and try to kill me. This increases my shallow breathing to 3 times faster than Brenda (I was usually ony 2/3rds Brenda's speed) and makes me feel DEAD tired.

Luckily, a very quiet day, with occassional fruit and drink, managed to wake me up after a six hour sleep and feeling like I'd been run over rather that I was actually "Road Kill".

Dr Kelly said that then Chemo crap would be finished next Tuesday so perhaps I may not need Anti-biotics after this next weekend?

Tuesday, feeling much better but realise that the Dex-crap-sh1te has to be 2mg over the weekend and I can drop it to 1mg on Tuesday to Frriday.

He's also suggested I take it whilst in Switzerland! BUM!

16th June 2014

Today's Radiotherapy has been moved from 08.48 to after 10.15. A problem at their end I believe.

To bring us all up to date...

My left ear is slightly burnt.

I've lost the hair just above my burnt ear

I moved the Anti-biotics to an ealier time...instead of 06:00 and 18:00 Sat followed by same times on Sunday. It became 18:00 Fri, 06:00 and 18:00 Saturday and 06:00 Sunday. This gave me a much better Sunday and Monday morning is peachy.

I increased the horrible Dexamethesone to 2mg for Sat n Sun which put me in a foul mood on Sat afternoon and Sunday. However, Monday I'm back to 1mg (2 x 500mcg) so I should be nicer to anyone from Tuesday onwards.

Slight downside. Because of the burnt ear I have been unable to lie on my left so my left "burnt" ear is now blocked as the normal wax has stayed put. I hope I can get it cleared out today.

I'm happy that both the left and right Eustachian tubes are free as I can suck and blow with my nose shut to decrease or increase both inner tubes. I need this opened up for the flight to Switzerland on Wednesday.

 
Radio Therapy timings HERE
 
 
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