Latest Update: 5:25pm

Sue is not going for surgery today. She has been switched to a different Doctor (Bailey), who has changed the game plan. He wants a biopsy before they decide to open her up.

It is expected to be CT Assisted biopsy and “should” be Tuesday or Wednesday but “most likely” Tuesday.

No explanation was given as to why Dr was switched but nurse did say this Dr is a bit more particular of how he wants things done.

We have arrived in London. Sue is being prepped for “on-call” surgery tomorrow. She should know sometime in the morning before lunch (on 27th) whether she’ll be going for surgery.

The Dr who visited us said she can’t say if they are doing the actual surgery tumor removal AND biopsy in one like they’ve been suggesting the past few days. They may still do only a biopsy with needle. They always prefer to have a biopsy first because it decreases risk in tumor removal if they know what they’re working on.

She said this information won’t even be decided til sometime in the morning, Dr’s arrive at 7am, figure out everything that needs to be done for the day, decide what proceedures they will do that day and who is going for them.

Sue had a good sleep last night. Managed to have a full bath yesterday too, feeling fresh and clean and happy about it (thanks Kelly & Erin!). Hips are bugging her a lot so far today, sadly the Hydromorphone doesn’t help much with that (doesn’t do much for muscle pain).

Had a visit from the family doctor again. No new news, she’s sticking with hopefully Monday on the London bed.

No results on bone scan yet but Doc says as soon as there is they will be sent immediately to her and she will update Sue. This is expected Monday morning.

As to what to expect for surgery: Dr says Sue will likely remain in London Hospital for a few days after surgery for some initial rehab.

If she needs more days beyond the first few in London she will likely be sent back to Woodstock Hospital for a few more but is expected it won’t be much more than a week before able to go home and continue a monitored recovery from there.

Update 7:40pm: We are in the transfer vehicle en route to London (Victoria), they got us a bed.

Update 8:50pm: In London (Victoria), Building B, 9th Floor, RM 216.

Sue had a good night last night, got some sleep, we’ve gotten better control of her pain med distribution now and she’s been given more flexibility on how often and what dosages she gets.

We were happy to see her family Dr come in for a visit around 10:45 this morning.

There’s no updates from the bone scan yet. Dr confirmed sue will definitely be getting surgical biopsy + removal of as much tumor as possible likely within a few days after we get the transfer to London. She also said that this procedure will most likely reduce her pain substantially.

Unfortunately she also informed us London still doesn’t have a bed for Sue and most likely won’t until Monday at this point. As such, this will likely be an uneventful weekend unless we hear results from bone scan tomorrow.

Family Dr says she will be back in for another visit tomorrow some time regardless of whether or not there is any more info to share.

Had bone scan part 1 this morning at 09:00 (20 min), part 2 around 12:00 and took 1 hour.

London confirmed 24 – 48 hours bed, move will be at moments notice but usually the know by noon each day if she’ll move.

London also said they wont be doing the CT Assisted Biopsy with needle, instead they will do surgery and get Biopsy as well as remove bits of tumor to relieve pressure on nerves; should happen sometime during next week (no date yet).

Some people have been asking size of tumor, we asked Dr today who said basically covering as well as inside of the L3 vertebrae, bone has been eaten away. They will possibly need to fuse some of this bone during surgery.

Bone scan results won’t likely be given to us until Monday.

UPDATE 1: A nurse told us this late afternoon that London is rammed and we might not get transferred until Monday.

Update 2: Some people have asked if she should be walking to the bathroom on her own (is it okay for her back). We asked Dr, who says yes 100% they WANT her to be, otherwise muscles will seize and sugery will be more difficult and recovery longer. She also said the surgery for the biopsy is routine and they know exactly what they’re doing/experienced.

Sue wanted me to add a footnote today: “fuck all this”

Assessment in London. The plan (hope) is to get a bed in London within 24 – 48hrs. Reinforced the idea that they are working under the assumption and making plans that there is still a primary source elsewhere and that they are trying to find it – they want to rule that out. Biopsy is ultimately going to be required in order to be certain though.

Not a good day, pain/discomfort for 70% of the day – they changed Hydromorphone to a time-release version, pain management has been very inconsistent throughout the day, not enough dosage.

Was a fairly good/comfortable day. New pain meds were working well until 9pm, very painful bowel movement, blood pressure hit 225/101 (a new record) from the pain.

Took Lorazepam + Hydromorphone, managed to get to sleep, awoke middle of night screaming in pain 🙁

If you are interested, here you can read the story of how this tumor kind of came out of nowhere.

November 10th, 2019: The first sign of any issue and all that was was simply some light lower-back pain which Sue brushed off for a while as something she did during exercise that day. Pulled a muscle maybe.

December 18th: Over the course of the previous month this back pain gradually got worse, she started to get pain in her hips while walking, down IT Bands and around greater trochanter. On Dec 18th we got in to the family doctor her perscribed Cyclobenzaprine which is an anti-muscle spasm medication.

At some point between the 18th & 23rd we took Sue to the walk in clinicm, Cyclobenzaprine hadn’t helped one bit. By around this time, Advils had become part of her regular diet. They called it muscular-skeletal, or “mechanical” pain, but nontheless he ordered a back X-ray which was done in Woodstock a couple days after and was completely clear/no indication of problem at this time.

December 23rd: Went to ER for further increased hip pain. Recieved a cortisol shot in right hip which seemed to help quite a bit for around 24 hours and then it all came back. We’ve been told it probably helped because there’s a freezing agent with the cortisol shots that only lasts for about that long. No additional drugs we perscribed.

December 29th: Went to ER again, pretty much same deal, everyone is thinking this is “Sciatica” which we eventually learned through our own research is not an actual diagnosis, but rather a symptom of something. It just means she has Sciatic Nerve pain from some unknown source and it usually resolved on it’s own if you manage the pain and do a bit of phyio exercises. This time we were sent home with Naproxen (Aleve) however she also mentioned Gabapentin might be useful. The next day we got our own perscription for Gabapentin from getmaple.ca

December 31st: Was able to get in a rush/urgent visit to family Doctor office but saw a fill-in Doctor. The fill in bumped the Gabapentin from 300mg per day to 1800mg, also thought it was Sciatica, possibly “Piraformis Syndrome”, a muscular issue in the butt cheaks. He also ordered blood work & the MRI. MRI was scheduled for February 19th!! Through some luck and the magic of friends, she was able to get this bumped up to Jan 17th (thank God!)

Fill-in Doc also sent her to physio-therapy. Up until this date she’s been unable to stand without a ton of pain in hips and burning down fronts of both thighs, but generally she was able to lay on the couch all day just fine, muscles all around hip area were constantly sore and tender.

January 2nd: First day of physio, walked in thinking this is the first step to getting better, walked out barely able to walk from that day on. Was bed-ridden at home, could no longer sit without massive pain, or even lay on couch. Had to switch to laying on pefectly flat/supportive massage table with a few pillows.

Spent two weeks in that position, had some people come to the house to give massages, chiropractor, naturopath, streches, etc, etc. Nothing help and a couple of them commented Sue’s pain was very unusual for standard “Sciatica” and that all her waste area is very inflamed.

January 13th: Burning pain in legs increased substantially.

January 14th: Managed to get Sue to the Family Doctor’s appointment, did a bunch of Sciatica tests and still working under the assumption it’s Sciatic related, however, she admitted there is very little else she can do for her right now until we get the MRI results.

January 17th: MRI.

January 19th: Family Doc calls with the bad news of spinal tumor + fracture. Ambulance is called and being admitted immediately to Woodstock. All Doctors we have seen have been working under the assumption and telling us the entire time that they believe there must be another primary source that the tumor game from because tumor’s exclusively on spines are quite rare. The plan is to get her to London ASAP but do the full round of as many scans as possible while at Woodstock. X-ray, CT Scan, MRI & Bone Scan all done by Friday.

From here on out we will have daily updates at least til we get some treatment started. Maybe switch to every few days or weekly once we get to recovery phase.