Miracle... there is no such a thing!

[peanutz]

Bad news. My partner had a scan last Friday and the result is not good. His second tumour in the front left temporal lobe has grown from 2x2cm in early June to 2.?? x 4.6 x 4.1 cm even though the original tumour site looks good... a bit of a mixed bag. The doctor has decided to continue with Avastin and add Carboplatin to it for the next 2 doses before we decide whether Avastin works or not. Here comes the only good news we receive today, Roche has changed their policies after we pay for 2 doses so we do not have to pay anymore. How convenient after I questioned the amount of Avastin that the doctor prescribed being a bit lower than it should be due to lacking of proper weight check and adjusting the amount of drug to suits the weight prior to the infusion. My partner was 100kgs back in March when the doctor weighed him last and so he prescribed 1000mg of Avastin (10mg/kg) but he has since put on weight due to Dex and was around 120kgs when we made a decision to go with Avastin so he should have received 1200mg. I did mention about my partner's weight increase to the doctor but he took no notice. I also questioned the pharmacist at chemo day unit when I learnt that he would get only 1000mg which was odd but nothing was done about that. I'm so frustrated with our medical system. The other day I rang up an oncology nurse to find out who arranges all this appointments for the oncologist and the scan because we initially had an appointment for MRI on Tuesday (tomorrow) while the appointment with our oncologist is for Monday (today) which doesn't make sense. I really hated it when she said "Smart girl, good on you that you figure it out it doesn't make sense. Now ring the MRI department and reschedule it to be earlier.". I'm not asking for a compliment all I need is someone telling me what has to be done and I can arrange it all myself instead of them stuff it up and need me to figure it out that they stuff things up. Another stupid thing is we were given a number of registrar on call to call in case there is some issues. I called the registrar over the weekend due to my partner being sick but the response I received was "You've got the wrong number. (mmm... sorry they put me through to you.) I'm a registrar for stroke. I don't know anything about Avastin. I don't know your partner. If not urgent, wait until Monday; otherwise, go to Emergency." hang up.... I guess it's something I have to get used to and as the doctor said it could be all over in 2-3 months time. All I know is they can't fix the damn thing, how could they know how long someone is going to live for!?

[SILLY]

Sorry you are having such a bad time dealing with mix-ups and mistakes on top of the cancer . As for being told it could be all over in 2 - 3 months ,the doctor is trying to give you an idea of when . I doubt he is sure ,just estimating to help you to be prepared in some way . It must be so difficult .

[sarah]

Hi Peanutz, I hear your frustration too, I truly do. Like SILLY said I am sorry also. I remember going thro the same things - and it made me crazy with stress and frustration, and also made it really apparent that, the system is not what it portrays itself as. I get your frustration and utter dismay when you got the "wrong number" - I imagine you were furious with frustration. What I can say from my experience is that it is typical. I remember starving with no food and unable to wash myself, alone in a large house, there was no help anywhere that I could find. Yet, there were ads seemingly everywhere the media could dispense, giving me - and everyone else - the impression that there was help everywhere. Again, different story when you in it. I think the other thing that might be going on with you (with me also at (all) the times), is incredible trauma and high-stress. I think it's important not to underestimate what effect this traumatising experience will have on your interpretation of the world around you, and how you cope with it's imperfections - e.g.: your adrenaline and cortisol (amongst many other hormones etc) is running very, very high right now and it is likely putting your system "under the pump" - not to mention the emotional/spiritual distress. All in all what you get is a looped feedback system that may need some external/third-party (objective) force to guide you, i.e., you may be so close that you are getting stress overload, and exhausted. Poor love. We understand, we've all been through it, or similar, it's why we're here. So of course, I am suggesting counselling for someone to support you and your partner - or even, just you - through this. The more external support you alone get at this time, the more you can efficiently and effectively support your partner right now too. That is of course depending on if you can fit the time in amongst everything else. Which I understand might seem impossible. Often is the case that counselling and support stuff gets put off till after, after we are through the survival mode. which I completely understand too. It's all very complex. At least you can do is keep in touch on the forum and keep reaching out - well done for doing just that (personally I have a habit of isolating). Anyhow, these are just my thoughts and experiences, I share that they may be of help, or at least that you might feel less alone in your experience right now. I wish you all the best. Sarah

[rarsie]

Hi peanutz, We live in a 3,000 population country town in S.W. Queensland and we have so much support from our Coordinator which our public doctor arranged for us as I had been having problems like you with the city hospitals with f...ing the MRI s and braintumor clinic appointments. Now all I do is send my Coordinator an email for what ever needs doing and bang.. it is done. Are you recieving any kind of Pallitive care from a team CRY, SCREAM BUT LET YOU BE HEARD you need assistance Hope it comes soon Sandra

[tatsoi]

oh , I can hear your pain and frustration. i hope you find some support through all this...and spend more beautiful times with your husband. things can change so quickly it seems... please be good to yourself x

[The_Rowan]

I am so sorry to hear about all the mix ups the medico's have been putting you through. Unfortunately, this does happen more frequently than we would all like. I have been very fortunate with the quality of my suite of medico's, however, back in the 80's my family lost my mother to breast cancer. The specialist she was seeing made a monumental f$@& up because he had two patient with the same first initial and surname...my mother, Glenda N and another lady Gwenda N. Gwenda surcomed to her condition and they archived my mothers file by mistake. I won't go on with the details, but when my mother got really sick again, we asked her oncologist how much time we had. We were told a minimum of 6 months....Mum lost her battle two weeks later. Any prediction of how much time a loved one may have left is only a best guess. Sometimes they get it pretty close, other times they are way off the mark. Just make the most of every day, and never put off anything because you think they are just having a bad day. Hang in there Peanutz

[peanutz]

Hi Sarah - thanks for this. I don't know about counselling, not sure how it works. I know I need to talk to someone, more like my friends but they aren't always available and I'm not good at initiate the talk so I whinge/rant/or whatever they call it on this site 😛 The bad thing is I don't get the feedback and hug right away which I sometimes need. People told me not to put a smile on my face and act like everything is fine all the time. Well, I don't if they hit the right spot or I'm drunk which I learn and try not to drink too much when people around. I couldn't believe I was crying with my partner's brother's wife whom I met 5 times in the past 11 years. Anyway, I'll get my friend to come over to have a chat a bit more.

[peanutz]

Hi Sandra - who's this co-ordinator?? a nurse? social worker? Our big old butch nurse who acts like a doctor and appears to be the one who coordinate thing is hopeless. I think she might have mentioned something along the line that she's the coordinator. She's the one who said good on you smart girl to me. I tried calling social worker at the hospital but none was available at the time, left a message but never heard back. I'm getting a palliative care nurse to come in for assessment on Monday. Hope they aren't hopeless and waste my time. Now looking back to the past year, when Dennis was part of the clinical trial, the doctor and nurse apologised if we found them too attentive and looked after him too well. We wondered what they talked about. We know the schedule, when to come to the hospital, what it's for, who we'll meet, what they will do, how long it will take even though sometimes we have to wait a bit for our appointment. Everything was organised. They checked his heart, his weight, etc. They were quite attentive and looked after us very well until they discovered the second tumour that keeps growing and kick us out of the program. It's probably not that bad but still. Take care Sandra.

[peanutz]

Hi The Rowan - your story reminds me of my partner's mum. I think her toe was amputated when it should be another patient's. Shocking health system! Early on, I hope we got the wrong scan but I don't think we did. 😞

[rarsie]

Hi Peanutz The coordinator is a RN at our local hospital she volunteers her time, lovely girl and when she is off work then the nurse educator takes over. We are very lucky, we also have a coordinator at our Chemo hospital in Toowoomba but she is no where like the local one. Start jumping up and down Sandra

[peanutz]

Hi Sandra, You must be lucky to find a nice nurse then. We aren't lucky or the hospital we go to is hopeless, no one seems to care. :( Nat

[sarah]

Hi Peanuts, you're not alone in your despair, there seems to be a lot of people that I come across these days who express the same feelings, ie, that people more and more just don't care. Some people on the other hand don't experience this. I'm still trying to figure out the discrepancy - maybe people are just too busy these days and stressed with morgages and car loans. I sometimes ponder that people in the medical industry get plain sick and tired of being faced with pathetic sick people all the time (mind you, it's not all of them). Don't stop leaning and expressing your 'stuff' on this site, it's here to support you and your partner. You need all the support you can get in this time. Sarah.