Jumbled schedules and scanxiety

Dear all,

It's been a really insane past week for me. As if my scanxiety isn't enough to make me depressed and emotional, hiccups and constant changes between, different hospitals and even different departments within the same hospital just made me even more anxious and confused!

I gotta say I didn't even know how I managed to even keep my little bit of sanity and rationale to be the center point of coordination for these 2 different hospitals and various departments!

Our scans and tests schedules were all planned one month ago! Some were confirmed easily and some could only be confirmed the week before due to doctors schedules coming out on a weekly basis for some dept? I was actually truly impressed with the efficiency and coordination of the various departments in managing to not only put everything in a week (the way MSKCC does) but they also managed to schedule them at the time we wanted! It's unusual for them to plan everything day after day as it takes more coordination. Not sure if it's a first for them, but definitely a first for us in singapore.

This was how our initial schedule looked like:-

1) 17th July, Sat - Set plug at KKH @ 8:30am and Inject MIBG isotope at SGH @ 9:30am

2) 19th July, Mon - Day 1 MIBG scan at SGH @ 8am

3) 20th July, Tue - Day 2 MIBG scan at SGH @ 8am

4) 22nd July, Thur - Admission to KKH, injection of isotope @ 10am and Bone Scan @ 2pm

5) 23rd July, Fri - MRI @ 8am and Bone Marrow Biopsy @ 10am

Everything seemed good. My crazy week started sometime on Tuesday when KKH Bone scan called me up and said: " Mommy, we called you to inform you that Charmaine's bone scan on thurs has to be postponed to August. We don't have a date but we will call you back. "

I, already functioning at a retarded rate, said politely but anxiously: "Why? And no of course! Do you have any idea we are waiting for her scam results to plan our next course of treatment for Charmaine? As of her last scan in April, she was only stable, not clear! If she isn't clear now, for which we do not know until her scans next week, she cannot afford to have a lapse in treatment for so long! And it was our NY consultant who requested for the bone scan so I NEED her full set of scan results to send to NY. " Thankfully, I had a wonderful lady on the other end of the phone. She said SGH just informed them that there is no more isotope so we are postponing all our scans next week but I will see what I can do. " I hang up the phone thinking that : " Okay, I need backup plan now. Maybe I can call Dr Chui to find out if we can schedule one at Mt Elizabeth Hospital if worse case scenario. " Rosemary called me back less than am hr later, saying that there was a last min cancellation on Monday @ 10am. But Charmaine has a 2hrs MIBG scan @ SGH! She said if I don't take it, there will simply be nothing else they can do. Finally, we decided we would push for it and I will try to reach KKH by 11:30am for her injection which expires by 12noon. So, now it is going to be a massive day for Char but at least we have all our scans still!

Than came Thursday. Another lady from Bone Scan called me. Another shock. " Mommy, we are postponing Char Bone Scan on Mon to a later date in Aug. " I have no idea how I managed to stop myself from not screaming! I said you already cancelled me once and now yet again!?!?!? I explained to Rosemary before, thought it was all settled? This new lady, just answered flatly, " we don't have the isotope so we cannot do the scan. We are calling to rest to cancel as well. " I decided that there it would be futile if I continued the conversation with her. I said ok and immediately emailed Dr Aung, informed her of the situation and asked for her advice; do we have to go to the private hospital or do we not do the bone scan at all?

In the evening, Rosemary called me back, said there's been a miscommunication and that Charmaine's bone scan on Monday has already been specially arranged and will still proceed as planned. All I could do was just say "thank you". I'm simply exhausted.

Its not all. On Friday, MRI called me up. " Mommy, we need to reschedule Charmaine's MRI to MONDAY. " Just how would a normal person react under such circumstances I don't know, but me, being emotionally drained and brain half shut, I just answered matter of factly, "we already have 2 scans scheduled on Monday from 8am all the way till 4pm at least! In case you aren't aware, we also have another scan on Tuesday. " I asked if it was a request put up by Dr B, the anasethetist whom I specifically requested for to do the GA for Charmaine. She said YES. I'm honestly glad that they are all so accomodating and has arranged for Dr B to do the GA and I am willing to cooperate as far as possible just to have her do Charmaine's GA. But, I couldn't. She said she would check and get back to me again. Shortly later, she called and said we would keep to Friday schedule. O.K.A.Y. Sometime later, another call from MRI, changed to Wednesday. I said OK but Charmaine has a Bone Marrow Biopsy which has to be done after MRI because it needs to be under GA as well. She said she would call Ward 76 and inform them of the changes so that they can make arrangements.

The drama isn't over yet. In fact, the most challenging one is abt to come.
On Sat, just before we were abt to leave home at 7:30am, SGH MIBG dept called in a panic and said : " Mommy, DONT COME! The isotope didn't arrive in Singapore as planned! I will call you back again. " Frankly, I don't know if it was too early in the day and I was retarded in response or I've matured so much in the past week that I could actually calmly said OK and not panic the usual way I would have. I'm worried mad, I'm feeling helpless but I'm at their mercy literally. If they said no isotope, there's nothing more that can be done. Shortly later, they called me back, said the isotope is now in HK and shld arrive on Monday. Pls come for the injection on Monday. I said, " Charmaine has a bone scan scheduled on Monday after MIBG. " The nurse was shocked. She said Charmaine isn't supposed to have her bone scan on Monday as it would affect her Day 2 MIBG scan results even if there had been no delay in isotope. The bone scan would have interfered with the accuracy of the MIBG scan...

Great. I'm dismayed, disappointed and shocked! Now on top of mommy being the center point of coordination between these various depts and hospitals, am I supposed to even know the dos and donts of nuclear medicine and various types of scans. I did inform Bone Scan that Charmaine is doing a MIBG and yet, in all her niceness, she still arranged the Bone Scan after MIBG. I asked, " Shouldnt the Bone scan pple know? " She said yes they should know. Sigh... This is a huge system lapse that someone needs to get it right. The MIBG scan is a very specific scan used almost mainly on neuroblastoma hence I truly can understand the lack of knowledge in it for the other departments but still, it doesn't justify this mistake. The Registrar from SGH called me personally upon hearing this messy situation and said that the delay in isotope turned out to be a disguise and that if we had gone on as planned, the results of the MIBG would definitely be inaccurate. Should I be glad? I know I probably should be but I'm still caught in the middle of all these mess with all the scan dates jumbled up and I'm seemed to be the one expected to make all the decisions on my own!

I'm stressed, I'm mentally tired and yet I'm expected to be rational, be able to plan like a seasoned secretary and decide like a doctor and yet fear and worry for Charmaine as her mother. How I've survived my past week, I honestly have no idea. I answered the non stop phone calls coming in, I discussed with the doctors, nurses and admin staff without shedding a tear or being hysterical. I kept everything to myself. I was void of much emotions which translated into this perfect calmness. I spent the entire sat morning in a primary school open house, answering calls and trying to fix a problem with the doctors.

Amongst the many suggestions put up by SGH registrar,

1) Cancel and reschedule all other scans in KKH for MIBG scan at SGH (because MIBG is more impt and that we will need to wait at least another month if we reschedule MIBG scan)

2) They will try to switch next week's MIBG patient timing with Charmaine's instead so we delay a week only and keep the rest of the KKH scans. ( Mommy, is it ok with you? )

3) Keep bone scan on Monday, inject MIBG isotope on Tue, keep MRI and bone marrow on Thursday and add on MIBG scan after we finish our morning procedures at KKH. Do day 2 MIBG on Friday. ( Mommy, but do you think Charmaine can take 3 big procedures altogether on Thursday? Will it be too much? )

Oh god, you honestly is maximising my potential to my limits. I had to repeat myself all over again when I speak to each new person. I undertand the importance of MIBG scan but doctors ordered everything for a reason. They need a complete set to validate between the different tests to have a more reliable result. And what abt bone scan? I can't get any appt until August apparently. Everytime they ask me if it's okay, I just want to scream and cry. But I found strength somehow to not go crazy literally. I appreciate the doctor asking for my opinion and my feelings but I found it almost absurd for a doctor to ask for my decision in such a way. I'm depending on a doctor, the supposedly trained professional to help me in the care and treatment of my girl's life and advice me on what should be done and what is better but yet I found myself having to make these decisions myself. You have no idea how stressed I was. I told him that being a mother, if you ask me and if I had a choice, of course, I wouldn't want to put her through so many procedures, 2 under GA, 1 with sedation in one work day! But I know the importance and urgency of all these tests, and health, risk and interferences aside, from purely a time consideration, it seem doable based on my previous experience. More importantly, being the doctor, he should recommend based on all the health considerations, possible risk and whether if the different scans will interfere with each other...

And I told him in my really tired and drained mind, " You really should be discussing with Dr Aung instead. She being Charmaine's primary physician should be the one making the decision. If she feels that she is comfortable with doing MIBG one week later, I would. If she thought that the tests are too urgent and she wants to push ahead with having 3 procedures on Thursday, I would too because I trust her. "

It was so ridiculous that SGH is calling me to inform KKH to call SGH. I'm speechless really. I had already called KKH myself even before they asked and when I called Ward 76, my instincts told me that they probably only had our old schedule, the first one we planned a month ago. That was Saturday and yet they didn't record any of the changes we made from Tuesday to Friday. I could only sigh. Told them to record the changes and informed them of the delay in MIBG. I explained the complicated situation and told them to inform Dr Aung because it was already saturday afternoon, we had to solve it fast.

Finally, Dr K discussed with Dr Aung and Dr K called to inform me that Dr Aung has decided to go for option 3. I said okay once again and hoped that it will be the last time any hiccups happen and that we can complete all the scans and procedures smoothly and safely.

( The above para was typed this morning at 5am but I didn't get a chance to post it and here's what happened this morning... )

I finally broke down this morning.
We arrived earlier at KKH this morning because I knew that the isotope would expire by 12 noon and the bone scan pple did request for me to go earlier last week but we weren't able to as we were supposed to be having our MIBG scan at SGH instead. So anyway, we arrived before 9am at Ward 76, called Rosemary and told her what happened. She being as nice as ever, said she would call the radiographer and check if they can bring forth her timing. Returned my call barely 5 mins later to say we can go ahead and register and bring forth injection of isotope.

I was hoping that Ward 76 doctor would set the plug for Charmaine because they are more experienced but they told us to go down to level 1 bone scan dept where the nurses are very experienced too. So I said ok. When I went down to bone scan, told them we needed to leave the plug in her hand because she has numerous scans for the next few days. She said "No" and it's against their policy. I said we have gone back numerous times with a plug, asked to speak to a more senior staff because I was definitely not going to allow anyone to remove the plug and subject her to poking on a daily basis! She said no point and that I should go up and ask the Onco outpatient if they would set the plug instead. I was very upset. I asked nicely twice before she agreed to call the outpatient. I mean all she needed to do was just to make a phone call on our behalf. I'm alone with Charmaine in a stroller and a luggage. I went up to 7th floor, than sent down to 1st floor and now they are sending me up to 7th floor to check. I don't understand...
Evetually, we were sent up to 7th floor Outpatient for setting the plug. We waited and as the clock ticked by, I got more anxious. It was already 10am, no one seemed to bother abt us. I went up to a nurse and asked how much longer we had to wait. She said she doesn't know because there are 2-3 more patients ahead of us with long procedures that will take more than an hour! I explained the urgency, she smiled so sweetly but I was fuming mad and I wanted to cry so badly. Than she said, we cannot do anything abt it. I wasn't trying to be unreasonable or impatient but the only isotope that we had gotten after so much effort was going to expire at 12noon. We can't afford to wait and yet she could smile so nonchalently at my desperation. Where would I get someone else to simply set a plug??? I walked out of the room and all these days of stress just got into me. I started crying outside. At that moment, Nurse Linda and Nurse Nuru saw me, walked up to me and asked what happened. I explained that all I needed was a doctor to set a plug but why am I being kicked around like a ball?!?! And my isotope downstairs is expiring soon!!! They immediately ran to look for another Medical Officer Dr Khwan who is at the inpatient ward, and she agreed to help Charmaine. All it took was 15 mins from prep to finishing and yet why did they have to make a simple procedure so complicated?!?!?

Thank you SN Nuru and SN Linda and Dr Khwan! I was in so much distress and already at wits end. Thank you for not just following the policies blindly. You could have just ignored me and not bother but you didn't. Instead you went the extra miles to help me solve the problem. It is the only reason why I'm able to still breathe now.

Charmaine was tired and hungry. I woke up having a bad gastric at 5am, puked the whole morning and dragged myself to the hospital and nothing seems to turn out right...

Charmaine and I are at home now... We need to wait for at least 4hrs before we can have her bone scan. Tired and drained, with no place for Charmaine to rest comfortably, I decided to head home instead. We will return back to KKH at about 2:30pm for her scan @ 3:30pm. This is the first time Charmaine is going to do the 1hr scan without any sedation so please pray that she will be courageous and calm and will be able to complete the scan smoothly with no fears. I asked for her permission and she has decided for herself that she wants to try. I'm of course glad that she is willing to try but at the same time, I'm wondering if being awake is actually more traumatizing. At least to me, not knowing and not seeing is sometimes better because she wouldn't remember much of these machines and usually she doesn't even know what has happened, except that she had took a picture. Ignorance is bliss... But too much sedation isn't good for the body either... Nonetheless, since Charmaine has decided, I'm going to support her and help her go through it.

Thank you all for your prayers... I'm going to get ready to head out to KKH soon.

May everyone have a good week ahead.

Love,
Cyn mommy