So today was a little frustrating. I think we’ve touched on the point that the days leading up to Tom’s scans are really a special kind of hell full of fear and doubt. This weekend we had planned a little getaway for my bday and I thought it would be the perfect distraction before his scan and results next week. Tom texted me at work today and said that the doctors (not Dr. J) were all going on vacation and they had to move out his appointment another 3 weeks! I went into a meeting and stewed for an hour and a half and when I got out I called the doctor’s office and let them know that was completely unacceptable and also what an incredibly crappy thing that was to do to two people living with a glioblastoma diagnosis. We scheduled that appointment three months ago and I’m sure the doctor didn’t wake up today and decide to take it off but have known of their vacation for sometime and the schedulers are just now getting around to rescheduling people. I pointed out that if the tumor is back this time around, waiting another three weeks will really set us behind and really impede Tom’s chances of good outcome in the event of a recurrence. This was also a big deal for us this time moving from scans every two months to every three months. So we got in the week they get back (later in the week) and Tom will still have the actual scan next week but we will have to wait for another week for the results. I feel good going into this scan. Tom is doing great, but today’s experience really brings me to the point of this whole post. We made this blog and facebook page for several purposes:
1) to keep our friends and family up to date on Tom’s status
2) to provide hope and ideas to other tumor fighters
3) to provide support for the caregivers
4) to raise money for brain tumor research and patient support
One of the biggest lessons we have learned is that the patient and caregiver have to advocate for the patient at all times. Doctors and schedulers are busy. Yeah they may care if you live or die, but they are also busy humans trying to deal with probably more patients than they should on little sleep. At the end of the day, the quality of care we get is up to us and we can never be complacent. I’m glad Tom’s doctors are taking vacations and taking care of themselves, but this could have been planned and communicated a lot better. Waiting an extra three weeks while the most aggressive tumor currently classified is potentially multiplying like crazy in his head is not an acceptable outcome. If we had listened to the first doctor we saw at the beginning of this journey and just taken a wait and see approach, Tom likely wouldn’t be here today. We advocated for Tom and got a second opinion. We research as much as we can and ask questions and I physically block the door if all our questions are not answered so the doctor can’t escape. I’m there to take notes for him and support him when the questions get too hard to ask or the news is too heavy to absorb. I research other programs and doctors in the event that we don’t feel he is getting the care he deserves. This tumor is not ever going to catch us flat footed and we refuse to be complacent even now, while times are good.