😧 How long for this kind of life do I have? N: I hope you will have another 20 years... at least D: Don't be silly, you know what my question is. What did the people say I will live for? N: Oh.. ok 9-18 months. So based on what they told us, you have 5 months to go. You'd better prove them wrong. D: I believe I have at least 6 times 1 month. N: Isn't it easier to say 6 months? D: I guess so.... LOL Let's see how we have travelled so far.... 4 August 2011 MRI - brain tumour found 8 August 2011 SURGERY 11 August 2011 Confirmed GBM, we were told we had 9-18 months on average. 29 August 2011 - STARTED CHEMO-RADIOTHERAPY 9 November 2011 (3 months) Scan - Unclear, residual from radiotherapy, brain swelling 17 November 2011 - STARTED TEMODAR CYCLE 11 January 2012 (5 months) Scan - good, no regrowth 7 March 2012 (7 months) Scan - discovered the regrowth, we were given: - 2-3 months if he does nothing - 6-9 months depends on chemo and response 10 April 2012 - STARTED CLINICAL TRIAL 10 May 2012 (9 months or 2 months after recurrent) Scan - second tumour found, original tumour site looked better. 6 June 2012 (10 months or 3 months after recurrent) Scan - second tumour had grown bigger, original tumour site appeared to be stable. 29 June 2012 - STARTED AVASTIN 3 August 2012 (12 months or 5 months after recurrent) Scan - second tumour had grown bigger, original tumour site looked good. 10 August 2012 - STARTED AVASTIN + CARBOPLATIN 17 September 2012 (13 months or 6 months after recurrent) Scan - second tumour is now twice the size within 6 weeks, original tumour site is fine. No more chemo. Radiotherapy and surgery aren't an option. ... View more

OK, so I have initiated palliative care for my partner who has continued to refuse support from palliative care team even during the first meeting for assessment. Well, in a way I don't blame him. He's more active (not staying in bed the whole time) in the past few days even though his speech can be good sometimes and bad sometimes. First impression with the palliative care nurse -- not good! This person was late for 45 minutes! We received a call at 8:45 a.m. asking when the appointment is and so I told her "Now, right now. 8:45 a.m.". The response I received was "oops, I'm running a bit late, will be there shortly." The meeting was .... , not sure exactly what I get out of it apart from a 24 hours number that I can call if there is any problem. The folder I receive has something to do with bowel movement record, from my poor memory. mmmmm we aren't at that stage yet, I think, even though we had a few accidents. Then, we had a meeting with the oncologist who made us wait for 1:30 hr. I asked if we could see him at another hospital where we used to see him and we could see him at 5 p.m. with very little wait time which suits me perfectly. He asked "is this appointment time inconvenient for you?". Errr.. hello... 11 a.m.!? If you are on time, it's probably alright but you keep us wait every time. I can't go to work in the morning and come back for this appointment. It doesn't make sense to go to work afterwards neither. After all the waiting which made the whole thing finished nearly 1 p.m., by the time I get to work it's nearly time to pack up and go home. What world are these people living in? One thing I note about the oncologist at this appointment. He seemed to be quite happy. I think the fact that he could see my partner in a better shape than 3 weeks ago made him happy and optimistic. But... shouldn't he be optimistic the whole time? If he's not going to be optimistic, he shouldn't he make us feel worse by looking so unhappy and pessimistic when he saw my partner wasn't well a few weeks ago. My partner wasn't happy to see his doctor all doomy and gloomy when he wasn't well. He felt everyone had written him off. It's just not right. He's fighting this disease and he needs to see that his doctor supports him in this battle. I hope he doesn't think I fail him by initiating the palliative care. ... View more