In the days before surgery for debulking of my brain tumour a friend asked me how I was going to keep everyone updated on my progress. 18 months ago twitter was not so well known, but I knew of a friend who had done marvellous things with SMS text messages and a website, so I googled around and found twitter. It seemed the perfect that I could tell people to look at my twitter page, and then send texts from my hospital bed. I only tweeted when I had something significant to say, so the tweets provide what I hope people might find to be a useful chronology of one persons treatment from surgery to return to work over a 15 month period.
I'm now giving up on twitter and switching to blogging my progress here.
As for Skype, I found this an enormous help. Before Surgery I spent 90 mins on the phone very patiently explaining to my parents (early 70s) how to install skype on their laptop. A few days after surgery they were able to feel part of the caring process by skype-sitting me from 200 miles away. I turned on video chat, pointed it at the sofa and duly went to sleep. I came round every now and then and groaned a quick hello. It proved to be a very positive thing for me and for them, and meant that they did not feel the need to come and see us in those early days.
my tweets ===> (You have to read from the bottom up.)
3. initial results from neuro-psychology tests suggest problem is reduced attention rather than memory - that's far more manageable :)10:48 AM Aug 7th from web
4. Went for my first haircut in 7 months!8:45 AM Jul 3rd from Twitterrific
5. Went to see psychiatrist re memory problems - referred to psychologist for tests.8:44 AM Jul 3rd from Twitterrific
6. Saw neurosurgeon who explained accelerated forgetting caused by irradiation of hippocampus. At least there's a reason for memory problems.8:32 PM Jun 17th from Twitterrific
18. Made it up to 37 hours a week, but that's draining my energy. Still struggling with memory/ concentration. Feeling frustrated and a bit low.10:36 AM Jun 2nd from web
19. Energy levels now good - still struggling a bit with concentration / memory. Working 25 hours a week. Small patches left with no hair.9:12 AM Apr 28th from web
20. Just got wireless Internet in my new garden office! Now I can walk to work.5:32 PM Apr 27th from Twitterrific
21. Saw consultant. Recent scan was as good as could be hoped for.9:50 AM Mar 14th from txt
23. A look at todays scan showed no change which is as good as could be hoped. Will see Neurooncologist in 2 weeks for full feedback.11:13 PM Feb 26th from Twitterrific
24. MRI scan this morning to follow up radiotherapy.10:46 AM Feb 26th from txt
25. Watching the earliest signs of the grey shoots of recovery i.e. very fine fluffy hair beginning to grow in places. Working 20 hours a week.7:58 PM Feb 17th from Twitterrific
26. In the office!12:54 PM Jan 26th from web
27. Just starting a phased return to work. Ten hours this week, and planning to build up over the next couple of months.2:04 PM Jan 19th from web
28. Beginning to need a bit less sleep. Days are filled with low energy activities - putting on weight - hoping to get back to some work soon.2:35 PM Jan 6th from web
29. Back home after a pleasant Christmas with family. Energy levels beginning to improve.10:15 PM Dec 26th, 2008 from Twitterrific
30. All hair now removed - had to wait until scalp was less sensitive. Feels much better than the silly patches I had been left with.7:21 PM Dec 16th, 2008 from Twitterrific
31. Just slept the clock round - that's on top of a few hours napping yesterday. Looks like I'm back to "body in charge" mode.10:46 AM Dec 7th, 2008 from web
32. Home after last of the zaps! Glad it's all over. They say I'll continue to feel worse for a couple of weeks, then begin to improve.3:25 PM Dec 5th, 2008 from web
33. On the home straight; looking forward to Friday. Energy levels very low now. Knees don't seem to know how to take part in walking properly!7:03 PM Dec 1st, 2008 from web
34. Side effects really kicking in now - queezy, sleeping loads and balance is poor - small inclines feel like steep slopes. Just 7 more to go.5:31 PM Nov 26th, 2008 from web
35. been to hairdressers and had a number 4 clip - think I should have gone further - 3 circular bald patches look like a 3 ring circus :-)11:03 AM Nov 24th, 2008 from web
36. Two thirds through! Just 10 more treatments. Sleeping as much of the day as I can today so I have the energy to go out this evening.3:13 PM Nov 21st, 2008 from web
37. sleeping lots now. Song from The Offspring "I got the worst hangover ever" spinning in my head, but with "combover" substituted :) agggh!!!9:29 AM Nov 20th, 2008 from web
38. Of course it's really week 4. Feeling generally quite tired now.9:47 AM Nov 18th, 2008 from txt
39. Here we go. Week 3. More hair loss over the weekend, but not yet shave it off time.11:48 AM Nov 17th, 2008 from txt
40. 3 weeks down- 3 to go. Beginning to lose some hair, though not too noticeable yet.9:38 AM Nov 14th, 2008 from txt
41. @timbissett love the Obama picture5:18 PM Nov 10th, 2008 from Twitterrific in reply to timbissett
42. Week 3 begun. Soon be half way through! Scalp feeling very sensitive now and tiring easily.5:15 PM Nov 10th, 2008 from Twitterrific
44. (2 of 2) The irony is this is what I was researching 12 years ago :)
45. Starting week 2 and feeling OK. To elaborate on what a "zap" is, wikipedia says this http://tinyurl.com/stereo-c...11:09 PM Nov 3rd, 2008 from web
46. 3 zaps down, 27 to go. 1st effect seems to be thirst. They cut eye holes in my mask today which was much more pleasant.8:16 PM Oct 29th, 2008 from Twitterrific
47. Back home after my first zapping. This week Sally can take me and bring me back every day, so no wrestling with public transport!12:09 PM Oct 27th, 2008 from Twitterrific
48. Simulation over. Not too bad an experience.11:17 AM Oct 24th, 2008 from txt
49. Heading to southampton to check the treatment plan on a simulator.9:25 AM Oct 24th, 2008 from txt
50. I have to wait until next Friday before starting treatment. A frustrating time, but I should be beginning to feel better by Christmas.8:00 AM Oct 15th, 2008 from Twitterrific
51. looking forward to a quiet week with no hospital appointments - radiotherapy will start after they've done detailed beam angle planning8:13 AM Oct 6th, 2008 from web
52. Having had 10 or so mri scans, a ct scan is like a walk in the park. Now i'm finding how public transport will work out in the coming weeks.10:29 AM Oct 2nd, 2008 from txt
53. Mask fitted, now waiting for CT scan.9:17 AM Oct 2nd, 2008 from txt
55. Walking home from physio - a busy and exhausting day.6:06 PM Sep 30th, 2008 from txt
56. Back from hospital after having face cast made - a weird experience but not too uncomfortable.3:33 PM Sep 30th, 2008 from Twitterrific
58. off to see what my hairdresser thinks of the surgeon's handiwork -- I think she'll be impressed8:55 AM Sep 30th, 2008 from web
59. going for post-op follow-up with psychiatrist re coping with vision loss9:55 AM Sep 29th, 2008 from web
60. Heading back up to see the scouts. No rain overnight, but heavy dew might have caught them out.9:07 AM Sep 28th, 2008 from Twitterrific
61. Just checked our scouts into survival camp. Weather looks good for them sleeping in their shelters. I'd like to be staying with them :(12:16 PM Sep 27th, 2008 from Twitterrific
62. Radio it is -- Just got appointment for mask moulding for next Tuesday afternoon.5:28 PM Sep 26th, 2008 from Twitterrific
63. Had a better nights sleep. Fairly sure I'll take the radio option. Just off for MRI scan.8:11 AM Sep 25th, 2008 from Twitterrific
64. Feeling at a slightly low ebb today, didn't sleep last night.Couldn't stay +ve for ever, Think I need to make my decision and move on.4:55 PM Sep 24th, 2008 from web
65. Mulling over the pros and cons of radio vs chemo. Hard to choose. Must decide in next few days.10:06 PM Sep 23rd, 2008 from Twitterrific
66. Just been called for neuro oncology appointment later today.11:30 AM Sep 23rd, 2008 from Twitterrific
67. Vision and confidence improving. Will walk into town alone for 1st time today. MRI scan on Thursday will allow for next steps planning.9:51 AM Sep 22nd, 2008 from web
68. Just finished reading the book that 3 weeks ago I thought I might never finish :)6:19 PM Sep 18th, 2008 from web
69. be sure to read previous 5 updates in reverse order (up the page) to make sense of them7:19 AM Sep 13th, 2008 from web
70. Headline 4) Most likely next step is 6 weeks of radiotherapy in oct/nov time frame, but must see the neuro-oncologist to plan7:18 AM Sep 13th, 2008 from web
71. Headline 3) he's confident he got all of the worst tissue out7:17 AM Sep 13th, 2008 from web
72. headline 2) the all important central 10 degrees of vision is undamaged7:17 AM Sep 13th, 2008 from web
73. that makes driving some time in the future not an impossibility7:15 AM Sep 13th, 2008 from web
74. post-op consultation with neurosurgeon: headline 1) Loss of vision was less than expected (roughtly 25% of area in each eye, expected 50%)7:15 AM Sep 13th, 2008 from web
75. feeling clean - haven't been allowed to wash my hair until today9:53 AM Sep 10th, 2008 from web
76. Millie has come to live with us (11 weeks old kitten) http://tinyurl.com/5bkg3a9:04 AM Sep 10th, 2008 from web
77. Staples are out! (fairly pain free process) and so far no sagging of the forehead - RESULT!12:48 PM Sep 9th, 2008 from web
78. Just woken having slept the clock round. Averaging 16 hours sleep a day at the moment.12:08 PM Sep 6th, 2008 from web
79. both eyes see only the right field (in the mirror I currently look like a picasso portrait - nose and eyes jumbled and out of place)12:16 PM Sep 5th, 2008 from web
80. made it to the corner shop - vision is improving but surgery (as had been predicted) left me with a left hemianopia12:13 PM Sep 5th, 2008 from web
81. had a good nights sleep at home - including 7 hours without painkillers - phone calls and visitors welcome ;)7:33 AM Sep 5th, 2008 from web
82. having a beer at home :)6:59 PM Sep 4th, 2008 from web
83. just skyped my parents6:02 PM Sep 4th, 2008 from web
84. He's home! More news later.Sally3:35 PM Sep 4th, 2008 from web
85. Prospects look good for going home today. I'm expecting a frustrating wait not knowing what must happen next. That seems to be the norm.8:34 AM Sep 4th, 2008 from txt
86. Having my first bath since saturday5:07 PM Sep 3rd, 2008 from txt
89. Nick tells me i got the bonus 2 for 1 surgery deal and the wrinkles have gone from my forehead. Lets see if thats still true after the staples out at the end of the week ...5:08 AM Sep 3rd, 2008 from txt
90. Thank you for all the messages me good wishes and support. They have given me enormous strength to come through this in good spirit.5:02 AM Sep 3rd, 2008 from txt
91. Was great to see mike t. Enjoying chocolate before putting my head down for the night.8:25 PM Sep 2nd, 2008 from txt
92. Enjoying nigel kennedy on the radio. Bishop John just came to visit, which was very pleasant. Feeling good today. K5:35 PM Sep 2nd, 2008 from txt
93. Read a paragraph of a newspaper. Getting around a bit better now. Could handle a few visitors please.4:33 PM Sep 2nd, 2008 from txt
94. Managed a shave. Hoping to sleep now. Probably ailowed home thursday10:03 PM Sep 1st, 2008 from txt
95. Vision seems a bit better. Sent this message myself!1:50 AM Sep 1st, 2008 from txt
96. will is updating because i cant use my mobile. Doing ok but vision not great at the moment.10:30 AM Aug 31st, 2008 from web
97. Awake now... Will post more later...5:28 PM Aug 30th, 2008 from txt
98. On the ward now. Jelly and ice cream for supper! Op will last well into the afternoon. K7:08 PM Aug 29th, 2008 from txt
99. Packing my overnight bag before an early night -- we have to pack Nick off to Dublin for a rugby tour at 6am! I had planned to go too :(8:09 PM Aug 28th, 2008 from web
102. In the office for the last day before the operation.10:57 AM Aug 27th, 2008 from txt
104. Wow this is cool! Blogging at the bus stop! Im on holiday!5:25 PM Aug 13th, 2008 from txt
105. Testing this great facility3:59 PM Aug 13th, 2008 from txt
