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Dear Bladder Cancer Canada family:
Sincere appreciation for your prayers and support throughout Tim’s illness, and since his passing on April 8th. I have felt the comfort of your prayers and hugs and love. After a short visit back home to Wyoming, where my family and I held a private interment for Tim, I am back in Hamilton.
I cannot express the volume of gratitude I feel for this group. You have been a wonderful encouragement and support over the past 14 months. I thought about your virtual hugs while in the hospital. Tim declined very rapidly throughout the month of March and early April. I wanted you all to know that on his last night, the nurses pushed a hospital bed up beside Tim’s for me and we were able to endure the night together and enter the morning, with Tim’s last breaths, being both covered under the same quilt…the quilt that Bladder Cancer Canada had sent. It felt very meaningful and right that we were sheltered that way for our last hours together. Thank you again.
I have made the plans for Tim’s memorial service (below) and I ask that you think of me on that day and send virtual hugs as it will be a hard, but hopefully comforting day as well.
Much love to my BCC family!
TeresaThursday, April 17th at 2:00 pm.
Ancaster Christian Reformed Church
70 Garner Rd E, Ancaster (map)
Rev. Kelvin Honsinger officiating
Light refreshments and visitation will follow the service in the Fellowship Hall of the church.
Teresa Gravelle
13 West 4th Street
Hamilton, ON L9C 3L9Hi everyone. A further update…
On Sunday Tim had a seizure and I called the ambulance. He was taken to hospital. Later that day, a CAT scan confirmed our fears. The cancer had spread to the brain. It was shocking to everyone that the cancer could be so aggressive and grow and spread even during his most recent chemo treatments.
It was a long and rather horrifying day as we waited for results of the CAT scan, worried about brain bleed and swelling. An MRI was scheduled for Monday to further pinpoint the spots in the brain. The MRI confirmed 8 spots in the brain.
Another terrifying kind of day, wondering what to do, how to proceed. The radiation specialist finally met with us at the end of the day and spoke fairly hopefully about reducing the swelling and targeting the cancer through a series of 10 radiation treatments beginning Tuesday, March 11. There are concerns about nausea. Tim is lightheaded, has much dizziness and headaches. Nausea can occur and would not be good. He has much back pain from spending 30 hours on an emergency stretcher waiting for a hospital bed and room.
Depending on how Tim reacts to the radiation treatments, he could conceivably return home and continue to receive the treatments as an outpatient.
We are coping hour to hour. Today Tim was a bit worse, unable to do much more than just lie in bed and keep still to keep the head spins at a minimum, but at least the radiation is a bit easier to cope with than chemo. They have reduced his Fragmin shots to balance out the risk of brain bleeds. Tim hopes so much to be able to come home on the weekend…I am concerned about having him home without medical staff to jump on instant emergencies…I am not sure I am up to being solely responsible in case he seizes again or falls, but if they will let him come home, I will figure it out. I would love for him to have some time feeling a bit better, in his own comfortable environment, and enjoy a bit of normal.
We are praying and hoping hard that we will still get some time yet of feeling ok…we aren’t ready to say goodbye yet. But things just seem to be happening so fast.
I’ll take all the virtual hugs you can send!
TeresaThank you all for the kind words, prayers and hugs. Deeply appreciated!
Just thought I would update on Tim’s cystoscope, which was on Wednesday. Tim’s neo bladder is doing very well, looks good, solid installation. Dr. S was pleased with how everything appears “up in there”. I am so glad. A piece of good news. Tim can have some ‘normal’ still in that area. So far, mucous production is tolerable and he has figured out how to handle daytime hours with no issues. Night time? Well, that’s a whole fluid-y other matter, but we both agree that given how well the neo bladder is doing, no complaints. The Maytag washing machine has nothing better to do anyway! 🙂
Greg, you astound and humble me. What incredible spirit and strength of character and outlook you have! So glad things are going well. This post is inspirational and I know it will help many who read it. A beautifully optimistic, glass half full perspective (cause if it was full, it might leak! smile).
Thinking of you and praying for you, Monique. Strength and peace to you. Deepest sympathies from Tim and I.
TeresaCan’t even begin to imagine what they are going through, but keeping them both, and their loved ones, in our prayers….may he cross the finish line peacefully, surrounded by love, and may Monique be given otherworldly strength and comfort to endure and walk with him the steps toward that line.
From a caregiver’s point of view, admittedly very early on in the process of post-RC neobladder (Day 19), but 8 months post diagnosis MIBC for husband:
1. Stick to reputable websites for info, especially initially (BCC, Mayo Clinic) — you can lose your mind with worry if you start surfing the net indiscriminately. Better yet, try to wait for doctor and oncologist appointments to get information because each case is unique (still trying to drive this lesson home personally!). Do NOT try to determine prognoses via the internet.
2.OK this one is admittedly very weird, (maybe Kiowa can take it off in a random direction to deflect the awkwardness of it) but it truthfully had a big impact and we both wish we had known it before surgery….Yes, edema or swelling from fluid is common in the days following surgery and Yes, there can be a LOT of swelling, and YES….THAT swells up very very large sometimes. And Yes, by THAT I mean THOSE. And Yes by THOSE I mean the scrotum. And by very large I mean mature cantaloupe. Had to be said. We had no idea and it freaked us both out a lot. Also made walking difficult at a time when he was told to walk all the time. Oh AND….Yes…they do return to normal eventually and husbands (at least mine) do NOT want it immortalized on film. 🙂
3. Hope and a positive outlook are just as crucial as chemo and surgery. And for us, the prayers and practical support of family and friends can sometimes be the only things keeping you going–accept gratefully any and all offers of help, in whatever form.
TeresaMy hearts aches for you and Mike, Monique. Thank you for your brave post and for all that you two contribute. It’s not much, but may the thought that someone totally unknown to you personally is thinking about you, praying for you and pulling inspiration from you, bring you at least a smile on this day.
Gord’s GrouPees…that is just a stellar name. Way to go. We’ll be wishing everyone at the walk a successful day. Maybe you will hear us cheering you on from the 7th floor at St. Joe’s! A great day for you to celebrate.
There was also, at least for us, a trace of a denial phase…this isn’t as serious as it sounds, maybe we are overreacting, maybe there was a misdiagnosis…that sort of thing. It only lasted until the first biopsy results though.
Monique…seriously, that cracked me up! 🙂 Tim used to do the same elevator thing. He and I approached things much like you and Mike…Tim wants to do everything and process everything one day at time, fight it but stay focused and only bite off what needs to be dealt with right now, whereas I am the one doing research, and all those other things you mentioned, right down to creating alliances with admin assistants, etc (i thought I was the only one!) and creating med charts in MS Excel and trying to plan out every stage of his recovery. The challenge with us is that I am on mega-information upload and Tim is on mega-I-don’t-need-to-know that download so it can get frustrating between patient and caregiver.
Kiowa…I am going to have to get Tim to read your posts…you two have similar senses of humour.
hi everyone! and thanks so much for the words of encouragement and support – it really helps!
We are getting close now. We have gone through pre-op, a bit daunting for both of us to consider fully how involved this operation is, but more so for Tim. I have done a lot of research but he has clung steadfastly to “one day at a time”. Now he is aware of most of what to expect and it is freaking him out a little. The enterostomal nurse stopped her instruction after marking him up and telling him about the tubes and surgery. She said she could tell it was information over load for him and that we could talk about what needs to happen in recovery and for maintenance after the surgery is done. She was awfully nice.
Tomorrow Tim begins two days on clear fluids only. That makes tonight red meat night!! 🙂
Over the weekend I came down with a vicious head cold. We have been on tenterhooks (what the heck is a tenterhook, anyway? I bet KIOWA has a definition!) that Tim would catch it, thus delaying his surgery, but so far so good.I may pop on and off this site a lot over the next couple weeks – be sure to tell me if I am dominating the threads too much but it is so comforting to have a place where you can check in with the “been there, done that” crowd.
Hello – here is a voice from almost three months ago! I have just re-read my earlier posts, written shortly after Tim got his diagnosis…how much has transpired since then! A short time that feels like a lifetime. I thought I would post an update:
Tim has gotten through his chemo. At times, it was almost overwhelming, but he was so strong and determined – I was very proud of him. He finished in the middle of June and is gradually regaining some strength and getting over most of the side effects. Our oncologist was pleased with how he did and liked the CT scan results (growth had shrunk and so far new no growths showing up elsewhere). Follow up tests and a 2nd TURBT and biopsy gave us some hope too…the ‘shaving’ showed no signs of SCCB! They cautioned that doesn’t mean it isn’t elsewhere in the tumour, in the muscle or that the micrometastases are all killed off through his body, but I am taking it as a good sign. The shaving showed only transitional cell carcinoma. We met with our surgeon and Tim will have a radical cystectomy and neobladder on September 20th. Tim had his PICC line removed a couple weeks ago, it had developed an arm length clot 🙁 Tomorrow we will see Thrombosis to see if he can finally stop the daily injections of Fragmin, and move to a pill form. Sure hope so, his belly is completely green and blue and bruised.
Between the chemo and the appointments and working full time, I haven’t had much time to be online but I expect to be posting some questions soon as the surgery now feels very real and close. Tim is feeling some definite fear now about the entire procedure, though we know this is a ‘no choice’ kind of decision. It’s strange…he is entirely focused on the surgery and the recovery and what kind of diversion he ends up with (we are told we won’t know for sure it’s neo till it’s over)…while I can’t focus on anything beyond what the ‘margins’ will tell us about how far it has spread. Difference in genders, I suppose. I do worry about how I will handle everything related to his recovery, but I’ll offload that on the caregiver page! (watch out, Ieva, here I come!!) 🙂
Anyway – just wanted to catch you all up. Deeply appreciate any and all advice, notes of caution, heads up, encouragement, stories of hope…it will all help, as we continue this journey we started in February. Wishing we could have attended the conference but it was smack-dab in the middle of chemo. Was also hoping to participate in, or at least attend, the walk, but now will have surgery on the brain!
