September 26, 2014 at 5:42 pm #1005
I know I have been on here before but so many changes, I was diagnosed terminal, aggresive, 90 percent active, went through 2 bouts of chemo that nearly killed me, but got through, I did a documentary and got 2 meet professors in Dublin on June 6 th, they sent me back down to cork Dr to get octretide scan, which came out good I am treatable, but since then it’s blood works, 24 hour urine and nearly October I am still well in good health, but stress of waiting is killing me, has anyone gone to rotterdam, is this the case of back and forward for months, is there not just a list of bloods needed, tests needed, I am feeling like a lab rat, will I make it there, could it have been treated at an earlier stage, letting it grow week by week month by month, would they not want previous scans to compare, yesterday they asked for it, I feel my time is running out of chances, I know God is telling me fight holding me up on my down days, my cancer is not acting as it should, I should be sick, would it not be good to be observed for future cases, not just left sitting month after month after month, anyone else in my shoes, anyone else been abroad and had to wait this long, is this the only way waiting and knowing ones cancer is growing, please any info will be helpful, I am just at my wits end, jackieOctober 1, 2014 at 2:28 pm #1006
Hi Jackie, it is so worrying and stressful to be waiting for tests and results. I am waiting for a date to travel to Rotterdam under the government purchase fund for a scan and treatment, as there were no tumors showed up in the octreotide scan that I had done in Jan.
I do hope things will work out for you and you will have all the answers soon.
All the best
MaryOctober 1, 2014 at 2:35 pm #1007
Thanks so much for your info, guess waiting months is the normal. Just been reading about getting tumours when at smaller stage is better, I know mine grow very fast from scans so know my chances are lessening, guess why its diagnosed terminal you die
waiting,lolOctober 1, 2014 at 3:30 pm #1008
Oh Jackie, I’m so sorry to hear that your diagnoses is terminal it must be so hard on you. Yes, there is a lot of waiting for tests, scans and appointments which can be so frustrating.October 1, 2014 at 5:57 pm #1009
Honestly I did not think I was terminal, I am surprising drs as am doing so well, I am in great health, and the oncology told me months, it’s not acting as it should lol, biypt like myself not normal, my hope was meeting dublin professors fabulous drs in June and they took a chance with me and gave me octreotide scan, and results I am treatable, it’s just the wait to get there is unreal, world shortage of tracer for scan, drs in rotterdam asking for tests and scans every coup,e of weeks, that I am going to try and change, if they had some standard list instead of back and forth looking for different stuff, I am going to see if my td can do something for us in ireland, and make getting there faster, as time is so important to get treatment, I still won’t go nowhere as I think God says nope your not finished your fight lol. So I will keep trying and think my main job is to make a difference for people yet to come, and show drs worst scenario of our cancer is not so, we all deserve a chance of these octreotide scans when chemo does nothing, we may have a rare cancer but we are a rare breed us irish lol
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