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A spot of bother

I, Ian, am writing this blog post on behalf of Sheryl as she is having difficulty typing.  It has been a rough few weeks.

The lymphedema in Sheryl’s right arm and shoulder has continued to get worse.  We have been to the Saanich Peninsula ER twice for the pain that her swollen arm has caused.  The lymphatic fluid has broken through the skin on her arm.

She has been pulled off the Capecitabine by her oncologist.  We had to go to emergency at Royal Jubilee Hospital at 1:30 am on May  8th.  She was prescribed hydromorphone pills and hydromorphone injections to break through when the pain of her arm became too bad.  Sheryl’s oncologist advised that the she needed to come off the Capecitabine as it was no longer working. Her right lung has also been filling with lymphatic fluid. Sheryl, always the fighter, asked if there were any other possible treatment options that could be attempted.  There was one but the Oncologist did not recommend it.  The treatment would require Sheryl to attend a private injection clinic for one drug and the Cancer Agency for another. She did want to attempt this but needed to stay out of hospital in order to qualify.

At home Sheryl had lost a lot of mobility.  Her left arm needed to be dressed and cleaned at least twice a day.  A home care nurse was visiting every two days and Sheryl’s mother, Joyce, was a great help during this time helping to change the wound dressing and care for Sheryl.

On May 16th we had an appointment at the pain and symptom clinic at the cancer agency.  It was a busy day for Sheryl as we had to give her a pain injection then clean the wound on her arm, get dressed and in the vehicle down to the Cancer Agency.  Sheryl has been too weak to walk any distance for the last few days prior so we got a wheelchair to go into the Cancer Agency.  Once in the room Sheryl felt nauseous and then had great difficulty breathing and was hyperventilating.  I hit the emergency button and the fantastic staff at the Cancer Agency jumped into action to get Sheryl Oxygen and medications to stabilize her. She was then transferred to the ER at Royal Jubilee in a short 1 block ambulance ride.

On Tuesday Sheryl was transferred to palliative care a the hospice.  They are managing her pain and have adjusted the dosages to help Sheryl be able to be alert and present. She would love to see all her friends and family that have always been so important to her throughout her life.

Please wish her the best while Sheryl goes through this difficult time.

The week that wasn’t

Sooooo…….two weeks ago was either the worst week or second worst week I have had since I started this whole cancer adventure. It is in competition with my very first week of chemo.

During that very first week my fatigue was so bad I could stand up for only a couple of minutes at a time and there were periods that I didn’t have the energy to hold my head up.  Continue reading

2 steps forward, 1 step back

Or maybe 1 1/2 steps back, I’m really not sure.

My current pill schedule is 2 weeks on, 1 week off the Capecitabine and the Lapatinib I take daily.  I started my week off Capecitabine a week ago Friday – the 10th of March.  Everything seemed fine, but on Sunday or Monday I started to notice the lump at my neck was bothering me a little bit.  Up to that point I knew the lump was there, I could feel it and feel it pressing on my neck tendon but it wasn’t hugely disturbing.  The area started to

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Pain & Symptom Clinic take 2

I had my appointment with the other doctor in the Pain & Symptom Clinic a few days ago.  What a difference a doctor makes!  This other doctor was another older, white male but his disposition was the exact opposite of the 1st doc.

Oh wait, a cute cat pic.  When I left for my appointment this is what my bed looked like:

orchid-in-bed

 

Miss Orchid can be a cuddle bug.

 

 

 

 

 

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Yippee, Anti-Coagulants

This was going to be a quick post about the brain MRI results that I keep forgetting about.  Instead, while I was hanging out with Mom on Wednesday I received a call from the Pain and Symptom Clinic to reschedule my appointment I have next week to the other doctor (may he be a good one).  The nurse also told me she thinks that the referral to the Anti-Coagulation Clinic has finally gone through so I should get a call from them in the next couple of days.  Within minutes of hanging up the phone it rang again.  This time it was the Anti-Coagulation Clinic.

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Not quite puppies and kittens

I saw my oncologist last Thursday and I told her about my experience at the Pain and Symptom Clinic consult.  I started with the bit about not getting any medals.  Let’s just say she was a little stunned that a doctor would say that to anyone.  I suspect that she didn’t want to believe me but she knows me well enough to know I wouldn’t make something like that up.

I told her the rest and she said she would talk to the nurse that I knew that had been at the Continue reading

I’m not winning any trophies 😢

So this is the random post that is about an appointment I had yesterday.

Last time I saw my oncologist she was feeling bad about how quickly the TDM-1 failed me.  I’m not sure if I had posted this previously, but she told me that she has been disappointed in some of the results she has seen amongst her own patients that have been on TDM-1.  The patients that moved directly from Herceptin to TDM-1 after a treatment failure often had long-term success of 1-2 years.  Patients that switched from the Herceptin/Pertuzumab combo, the last combo I was on, my onc has only seen 1 patient of Continue reading