Monday, September 14, 2015

Gratitude

Dear Life,
Today I'm grateful for sunshine, friendship, casseroles, caring people with warm hearts and prayers reaching out across the globe.
Marlene

On Saturday morning we went off to the Fairgrounds to help set up for the Fall Fair which is starting this coming week. I was ordered to sit and be quiet. Hmf! But it was nice to see all my friends. Working the Fall Fair is like meeting family.

Hubby was doing the heavy lifting and sorting, I wiped down plastic and drank coffee. Oh and showed those who wanted to see, the staples in my head. Always something to do, right?

Sunday we ventured out to Church - me wearing the pink pirate's hat from Jan (see post) and large earrings to complete the look. Really don't want people to get sick when they see my head at this stage, although it is a very neat and tidy wound. The support and outpouring of love made us feel humbled and overwhelmed.

We are embarrassed but Rev. Lloyd sat us down in hospital last week and told us to allow people to help, to reach out, and to embrace us. Thank you, everyone, for every greeting, every smile, every casserole or loaf promised, for driving and looking after us during this time. We sincerely appreciate every gesture and email.

PICTURE FUN - The twins
Joe is my champion, my brother, my twin, my friend. Picture below was taken at church the Sunday before my surgery on Tuesday -- we didn't know how bald I'd be after surgery and we needed to have a record! Front view with wide smiles, as you can see. Below that is the one from yesterday ...


Back views of our heads a week later. Who looks best? Yes, I know no warning on the staples this time, but it is clean and no blood and only the partial wound! Staples will be taken out on Friday, ten days after surgery. There is very little pain and I've only taken ordinary Tylenols two or three times a day since surgery. 



(Full wound taken on surgery day is on this post if you are curious. LINK

Today I'm by myself for the first time in days! Friends will pick me up for a coffee date and we'll have fun and laughter in the sunshine for an hour or two before the old bones would have to be rested on bed again. Seems the body will take a while to shake off the effects of the anaesthetic and the surgery, but there is a heap of improvement already, for sure. 

Arno is ready for his surgery on Wednesday. I think he just wants to get it over now so that we can carry on with our lives. 

My brother André was finally discharged today after his surgery last Wednesday! I have pictures of his wound, but haven't asked permission to use them. There is still some bleeding and yesterday two blood clots came out but at least he was set free and would be able to sleep in a quiet bed now. He still has to take it easy for a week as the internal wounds heal. 

Arno's brother Chris in Australia, who had cataract surgery on Sept. 3, says he can see colours so much clearer now. Although the eye is still a bit scratchy, it feels a lot better to be able than to see through a haze as the other eye still does. That one will be done in a few days. 


UPDATED AFTER MEETING WITH FRIENDS

What joy to be with friends, to be out in the sunshine, to share coffee, cookies and stories and to know a week ago the surgery was still on the schedule. What amazing lives we live! I am always referred back to the poem often contributed as being written by Walt Whitman, but it was really Angela Morgan. 
[Shared on this blog in 2011: Such An Age As This ]

Sue picked me up and friend Anne B. met us at Fortinos to share conversation and catch up. We had to pose for a picture, right? Marilyn did the honours this time.

With Anne

Anne with her smile and blonde hair, and me with the pink pirate's hat and silver earrings. 

Marilyn brought a gift of her homemade scones, which are a particular favourite of mine --- only have to have brain surgery to convince her to make me some, hehehe! So we had to go hunt for clotted cream, which has been sold out for months lately. 

Ran into Sheila and we had to smile for a picture of course!

Such joy to have so many friends, to run into familiar faces, to be happy to see each other and to feel the warmth and care holding us up. 

With Sheila

GUESS WHAT???
Today, for the first time since about May, there was Clotted Cream in Fortino's!! 

I just had lunch of fresh scones, strawberry jam and clotted cream, added some rooibos tea --- now to rest and enjoy life!!


Thank you, Marilyn, for this gift; thank you all my friends for your love. There's more, many more to thank, and you know who you are and what you are busy arranging. 

Clotted cream
....."Due to its high saturated fat content, the regular consumption of clotted cream is usually thought to be bad for health, though some dairy fat in the diet is considered beneficial. ..."    
and I want to believe!!  LOL
https://en.wikipedia.org/wiki/Clotted_cream


grat·i·tude
ˈɡradəˌt(y)o͞od/
noun
  1. the quality of being thankful; readiness to show appreciation for and to return kindness.


Friday, September 11, 2015

What a hat!

To be home in my own bed, with my own pillow, the cats and quiet - what a bonus! And no, Anne, nobody pooped the bed last night --- but the one cat apparently pooped on the porch this morning and made Arno very upset since there was clean cat litter and scooped boxes as always for him! LOL
For the cat, that is. Not for Hubby. You asked!

Getting home yesterday afternoon, I was sent straight to bed. Started reading some emails and fell fast asleep. Guess I was more tired than I thought I was and sitting up in the car for the drive home was probably exhausting too. 

Had a good sleep for most of the night, caught up with brother Andre at around 4 am our time this morning and saw his wound as well. He has a longer cut but I have more staples, so there! He has 17 and I have 25 .... He is still on soft food and must take a lot of fluid to help flush out the bladder. He'll probably still be in hospital until Sunday. 

Friend Sue picked me up this morning and we went for breakfast at our favourite little shop nearby. Yes, I was wearing a scarf to stop people from throwing up if they looked at my head! The place was full but we managed to find a table. Before we went out, I chatted with various friends and mentioned to one friend where we'd be, not thinking anything of it. 

Next moment, 3/4 through our breakfast, Sue said, "Here comes a woman with hats ..." 
I thought, no, it can't be, but it was! Jan, my crazy, artistic friend who is a whizz with sewing anything you can dream of, had popped in covered in pink feathers and carrying two hats!

The tables were all full but she plonked a hat on my head and we had a good laugh with everyone around us! They were all staring and I whipped off the scarf so she could pop down a hat on my bald pate. She said she was going to make me something to wear after surgery, but didn't expect me to be out so soon and clearly took the idea too seriously!

So what do you think? Sue took pictures with the cell phone.
Pics on the right was when Jan first came in, standing in the middle of the restaurant with the windows behind us. The big one was when the people next to us left and Sue ordered us to pose properly for the camera. As you can tell, we were both very bored with ourselves. LOL


Jan, you are a gem! She had also bought a pink sort of pirate's style soft fabric hat, you can see over her hand, which was then put on under the hat for the last picture. I guess I'll have to get some bright pink stuff to borrow and wear during the upcoming Fall Fair to go with the funky hat!

I am so blessed to have all these people in my life --- THANK YOU!




Thursday, September 10, 2015

Night at the hospital

Posting from home!

Apologies about no blog update yesterday. Didn't think anyone wanted to know anything after the fact of the completed surgery but caught flack from Janie (fortunately not a shoe flung to the head this time from her!) Trying to do a blog post from the iPad is - well - interesting to say the least.

So here goes. Updating you through the two nights and today spent at hospital. The end of this post will carry a warning so anyone squeamish can avoid scrolling past the "safe" stuff.

Yesterday (Sept. 9) was interesting after very little sleep during the night following surgery. My alarms and monitors kept going off since stuff attached to all four limbs and blood draining tube coming out back of the head out of the incision.

I tried sleeping, then playing games on the iPad, doze a bit, chat a bit - technology helped to pass the night, for sure!

Around 1:00 am during Tuesday night, which is 7 am Wednesday morning in South Africa, I phoned my dad to wish my brother success with his own surgery.  Complicated bladder procedure.  He was just getting changed so couldn't talk to him but good to set my dad's mind at ease about me so he could concentrate on the next child in surgery!

The ICU room was fabulous.  My night nurse, Catherine, a jewel. Within minutes of coming on duty, she had sorted out my blood collecting container from the wound by pinning it to the front of my surgical gown - it kept slipping off my shoulder and tugging the draining tube inside the wound.  Sort of like a mini-suction tube like you have at the dentist. Pinned to the gown, it magically didn't move and pull!

She didn't want to smile for a picture, though. But gave me a hug when she went off duty the next morning. Truly a sweetheart.

Catherine helped me brush my teeth in bed, since I couldn't get up yet.  Towels and dishes, water and wash cloths were brought.  Such a little thing, but makes such a difference I how you feel.  In the previous blog post you could see my liquid meal. Catherine went hunting for apple sauce to add to the bounty.  She came back with six little packets she had "stolen" from somewhere.  Just a little more substantial than lemon jello and cranberry juice! I snacked on those during the night.

7:41 am, Sept 9, 2015 (less than 24 hours after start of surgery): 
Surgeon came by to visit, took one look and stood smiling like a proud papa at the foot of the bed.  Guess that's a good sign! He also removed the head draining tube which was a huge relief.

Biska wanted to know if the wound was covered or not, so I took a picture.  Then Fi reckoned it was covered to protect my brain from zombies! My nurse, Jerry (who used to be a lumberjack in a previous life), told me to go look at YouTube to find how to avoid a Zombie Apocalypse. Such good and supportive friends, dragging new people into the void, right? Lol 

8:50 am, Sept 9, 2015 (24 hours after start of surgery): 
I have COFFEE! and it tastes good, not like the muck served up at Brampton Civic Hospital.  If Trillium can serve "real" coffee to patients, why can't Brampton? Same county and all that. 
Catheter removed and monitors off. Finger thingy to measure blood oxygen off. Yay! That thing bugged me squeezing my finger all night long.
Catheter was removed and Nurse Jerry said I should want to go to the washroom to drain my bladder in about four hours. Nope! My body, as usual, had its own ideas. Less than half an hour later he helped me stand and I went potty all by meself. Twice in one hour. Still swollen enough not to be able to get rings back on. 
Bat comments: I'm astounded! God is awesome!
She reckoned I deserved a sucker. Friend Bev came by with a Fortinos Cranberry-oatmeal cookie as prize. And another Timmies coffee. Hubby had already brought one earlier that morning when he stopped by. 

Green prayer shawl made by friend Sue H. kept me company in bed.

The DVT pump cuffs from ankle to thigh on each leg
around 7 pm, Sept 9, 2015 (31 hours after end of surgery): 
Walked with Arno through the hospital to the Timmies at the Main Entrance to visit with Jaco and Chelsea since my new room had barely enough space for two beds, never mind visitors. By then the wound dressing had come off and I had 25 staples and a very funky new hairdo on display. (Picture will be at the end of this post, so if you don't want to see, don't scroll pass a clear warning I'll insert!) 

Biska: Was your bum hanging out your green gown at least?
Hmf!

Answer: No! As soon as I was upright during the morning after surgery, I went to wash myself from forehead to tail and dressed in my own pink pjs. Nurse came by to help me wash --- and stood in the door with hands on hips, smiling and frowning at my attire. But she couldn't have been too mad. Called me "sunshine" and came by to visit in the new room. 

Between 1 am and 3:30 am, morning of Sept. 10:
My new roommate was noisy and complaining from the start when I got to the new room at 7 pm. Every time my nurse came in to do the paperwork to get me checked into the new ward, roomie would set up a wailing and demand for attention. Nurse would look at me apologetically and go over to her side. That's when hubby and I left the room to leave them to it, visiting with the kids elsewhere. Roomie was waiting for surgery but we couldn't understand why she was kept in a room instead of down in pre-op. 

Finally by 11 pm I had my last meds, put in my foam earplugs and donned eye mask to try and sleep. It worked - for about two hours when nurse shook me awake to give another pill. After that, sleeping was a joke, what with roomie kicking up a fuss as soon as her family walked in the room, setting off her IV alarm with her antics and then not pressing the bell to get the nurse to quiet the thing again. Piercing through the ear plugs. They kept telling her it was a sensitive thing and not to carry on so, but she would have none of that. 

I kicked up Netflix and put in the earbuds to watch Lilo and Stitch and not try to antagonize Morpheus! Then roomie  pooped the bed. Poor nurse had to clean up while I could pull my head under the sheet. By 3 am they bumped and moved my bed to get hers out to go to operating theatre. 

Sleep came after that, until once again I woke to bed being pulled and moved around to get her back in the room after surgery. She was on a morphine pump and I could hear the thing going constantly, again with the IV alarm going off every few minutes. 

By 5 am I slept again, only to be shaken awake again at 6 am for a pill and taking of vitals. A really good nap to about 6:45 am was enough to make me feel a little more human again. 

** Rant over ***

7 am, Sept. 10 (47 hours after start of surgery):
Took my trusty and beloved small Norwex cloth into the teeny tiny bathroom and started wiping some of the hard, dried blood out of the front part of my hair. Amazed at how much came out and how much better I felt after that! 

Breakfast arrived shortly after, and now knowing that the coffee was good, asked if there was maybe an extra cup around meant for a patient who was discharged. Roomie, probably trying to make up for the night, offered hers since she wasn't going to drink it. So I returned the favour by sharing lotion with her for her feet and a bendy straw I had brought from home. 

About 9 am, Sept 10:
Surgeon stopped in, smiled broadly and said he's "telling other doctors about me" - not sure what, since I was really trying to behave and not be difficult! He said he is leaving it up to Arno and I to decide what to do, going home today or staying until Friday morning. And I finally got him to smile for a picture with me after begging since before surgery! Thanked him for relieving the pressure in my head that felt like a tight helmet for the last few years. My head certainly felt lighter, after son Theo asked me to pay attention to that. 

Around 11 am, Sept 10:
Friend Rouxline came by after merrily driving down to the Lakeshore instead of turning on Queensway. LOL She had a goody bag in hand, but took one smell in my room and we departed to Timmies again to visit and have a steeped tea. Friends Carolyn and Bill called to say they are dropping by and joined us, her with a container of her 99-year old dad's homemade date squares which I love, and a container of more goodies. I thought I was going to go on my blubber during this surgery ... no such luck! 

After Carolyn and Bill walked me back to my room, knowing Arno was on the way, I enjoyed lunch - which was again too much to finish. I had the cauliflower soup, fruit and salad and left the pasta for Arno.

Told the nurses I'd vacant the bed and go sleep at home for the night. They started the discharge process, I waited for another friend to drop by --- thanks, Alexa! Took only about three years and a brain operation to see you again .... and then we were on the way home.

Peace and quiet, a nap on my own bed, cats saying hello, rooibos tea and Theo's homemade buttermilk rusks -- life is good!

From brain surgery to home in about 55 hours - not bad, I'd say. And not at all what was expected. Thought I'd be out of commission for days. Prayer at work.

MRI to be taken in about 6 weeks and back to the surgeon for checkup after that.

THANK YOU for all the messages, care, thoughts, prayers, emails, calls and interest from all over! I'm truly humbled and buoyed up by many people.

Now we concentrate on preparing Arno for his surgery on Sept. 16.

Oh and brother Andre came through his surgery, originally in a lot of pain, but now under control. He was still on bed rest and liquid diet when I talked to him earlier today. But sounded in good spirits and on the way back to health now that it was all over.

Thanks for all the thoughts surrounding him too!

WARNING
Picture of wound with staples showing will follow below.  
Stop scrolling now if you don't want to see. I'll post small and those who want to see details, can click to enlarge. 

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Still scrolling? Okay, here's a "safe" picture of the pink pjs and green prayer shawl. But below that is the staples. 


Front view

Back view with 25 staples and funky hairdo
The black marks and yellow-green bruises are where the prongs were stuck into the skin to hold the head absolutely still during the drilling and sawing process, as well as the surgery itself. 

Staples come out next week, about ten days after surgery. I got a special staple remover! My usual doctor will remove them. 

Good night, sweet friends!


Tuesday, September 08, 2015

UPDATED: Brain Surgery Day

 Marlene: Writing this post on Monday evening, and setting to go live at 6 am our time on Tuesday, September 8. At that time, we should be at the hospital. So no, Valerie, I'm not posting from the operating table!  :-) Technology is!

We had a joyful Monday as we got to spend time with both sets of kids. What a privilege! We had a photo shoot in Gage park, using the magnificent plants and flowers to play with backgrounds. Below is a quick collage of just a few shots.

Tripod, remote shutter release, various stops and poses and patient subjects.


Afterwards, we stopped at T by Daniel  and had the man himself serve us with his usual exuberance!
Thank you to so many people for love and care, messages and calls, concern and prayers. We can never thank you enough.

Off to bed now --- and Jenni will take over, posting a few times during the day as she gets updates from Arno. Remember to hit Refresh / reload if you come back later for updates!



Jenn (11.30am): Marlene and Arno made it to the hospital at 6am and were processed through very quickly by hospital staff. Arno sent this pic at a bit before 8am saying that they had an estimated 3 to 4 hour operation ahead and when I last followed up around 11.15am, it was still a work in progress.


12:30pm: Marlene is out of surgery. The doctors say that they were successful in removing most of the growth and preliminary analysis shows it to be benign. She will be kept in recover for a couple of hours and then moved to the after-surgery critical care area so that the staff can monitor her.

1:30pm: Arno sent a couple of pics of Marlene coming to with her head bandaging slightly visible in the second photo (the surgeons shaved a piece off near the top of her head ... very punk rock!). He says she is a bit groggy but is talking and seems to be doing okay.


5:00pm: Marlene is on her way to the critical care area. As you can see, she's already on the phone and checking in on people.



6:20pm: Marlene sent me a collage of what she sees from her bed right now with all of the cables and tubes hooked up to her. Says her head is a bit sore but mostly okay, and that her hair feels the weirdest right now! All stiff from the operation. She will be staying in this room until tomorrow afternoon and then should be moved to a shared room at that point. (TW: picture below includes a shot of the bandages, which are a bit bloody)


7:00pm: No coffee, but Marlene gets a liquid dinner (not that kind of liquid dinner...)



Brain Surgery Day

Writing this post on Monday evening, and setting to go live at 6 am our time on Tuesday, September 8. At that time, we should be at the hospital. So no, Valerie, I'm not posting from the operating table!  :-) Technology is!

We had a joyful Monday as we got to spend time with both sets of kids. What a privilege! We had a photo shoot in Gage park, using the magnificent plants and flowers to play with backgrounds. Below is a quick collage of just a few shots.

Tripod, remote shutter release, various stops and poses and patient subjects.


Afterwards, we stopped at T by Daniel  and had the man himself serve us with his usual exuberance!

Thank you to so many people for love and care, messages and calls, concern and prayers. We can never thank you enough.

Off to bed now --- and Jenni will take over, posting a few times during the day as she gets updates from Arno. Remember to hit Refresh / reload if you come back later for updates!








Saturday, September 05, 2015

Broken or not?


Hello, friends,
The previous post was password protected because we needed to get the news to friends and family first. We are facing a rather interesting September.

Two surgeries are over already! Our little kitten, Chewy, had to be neutered on Sept. 2. All went well and he is none the worse for wear.

Arno's brother in Australia had to have cataract surgery on Sept. 3. The eye is still a little scratchy, but we have full hope that all will be clear very soon. The second eye will be done later this month.
My brother in South Africa will have complicated surgery on September 9.

My surgery on Sept. 8, as posted before --- also the day our schools start again after the long summer holidays! We have to make sure we get to the hospital early enough.
[Jenni will post updates during the day to this blog. To see if there is anything new if you come back to the same post, hit F5 on your keyboard, or just refresh / reload your browser.]



Added to this busy schedule is that Arno needs more surgery, two months after his first surgery. He will be in another hospital 8 days after mine, on Sept. 16. Wonderful friends are driving to take him to the hospital, maybe visit or bring items, since I would be out of commission and can of course not drive yet.


HISTORY OF THE LUMP
  • Sept 2, 2014: I notice the lump on the left side of Arno's neck. 
  • Saw our doctor who ordered an ultrasound. 
  • Ultrasound found a lump of 7 cm on the thyroid, as well as two nodules on the right side. 
  • Try to schedule a biopsy --- finally managed to get one at the end of November 2014
  • By the way, we were told several times that a thyroid nodule or lump (quite common) is biopsied when it gets to 2 cm or about 1 inch. 
  • We were told the biopsy was clear, no cancer. So - we had to wait for surgery. 
  • Several months went by and after about five months of no surgery date, we called the doctor's office again. One of the (rather unfriendly) women said it "would take another year". 
  • That was unacceptable, so we made another appointment to see the doctor. 
  • His comment: "Why do I see you in my office and not on my operating table?" When we told him what the women said, he went with us to order them that surgery must happen by August at the latest. 
  • On June 14, I had my collapse and spent four days in hospital. During that time, he got the call that his surgery would be in July. 
  • On July 15, the left side of his thyroid was removed. We had to wait for pathology results. 
  • A month went by --- no results. I was told to keep calling the office, since they might not call us. Five weeks - no results back yet. That was after we were told originally that results would be back as early as ten days after surgery. 
  • Almost six weeks after the surgery, the results were finally back and we arranged to see the surgeon again. I quote: The removed lump was 7.5 cm in size. Of that, 6 cm is cancer.
  • When the surgeon delivered this verdict, I told him that his biopsy in November came back clear - no cancer. Did he put the needle in the tiny part where there was no cancer? 
  • Then surgery was suddenly scheduled to happen immediately, within three weeks. When I said I have brain surgery on Sept. 8, the surgeon let fly a rather strong exclamation. 
  • Is our health system broken? You tell me.  
  • Arno will have a full thyroidectomy --- a year after the lump was first noticed. 
Thank you to everyone who cares, who prays, who sent messages or cards, offered help, driving, cooking, fun and joy! We love you, we appreciate you and we are being held up by you. 

Thursday, August 13, 2015

Personal Favours


This post is a bit different, and more difficult to start than I thought it would be. It is quite personal. Wow! A personal post on a blog? Imagine that! I must the the first to have ever done that!! (Tongue firmly in cheek.)

A dear friend of mine, and known also to many Africammers who might read this blog, has a very special grandson. Young Nate didn't grow properly, and although his shining brown eyes follow the action of his older brother and friends while they play, he is too fragile to run and join in. He frequently gets sick. Tests found that he suffers from a rare genetic disease, called Fanconi Anemia. FA is an inherited disease that can lead to bone marrow failure and cancer. It is so rare that only about a dozen families in Canada are affected.

He would need a bone marrow transplant, but nobody in his family is a match. The transplant will not cure FA, but will give Nate a chance at a more normal life. The family is reaching out to ask people to register to be swabbed for a possible match. You could be the OneMatch that saves someones life. Perhaps you are not a match for Nate, but maybe you might be for someone else who is also looking for a donor.

Living too far away? You don't have to physically go to the clinic to be swabbed; you could also register online to have a kit sent to your home.

Please see the poster with Nate's picture (click to enlarge) for the clinic hours and address.

 If you have young children, nephews and nieces or grandchildren, perhaps purchasing a new story book might be up your alley and you are still helping! Part of the author's income will be donated to the FA Research fund in Canada.
Teddy Bear Stories by Tom Germann


No Kindle? No worries!
Remember you don't need a Kindle to read - the free Kindle app on Amazon can be used to read Kindle format books on your phone, tablet or computer. I love mine, especially because I now always have a book in my pocket.

To learn even more about young Nate and this rare disease, a Powerpoint Slideshow was prepared by the family.  I converted it to FLV and uploaded to YouTube to make it easier to view. No sound, but read the text, it only takes a minute. 




THANK YOU for reading, sharing and perhaps getting swabbed!


BLOOD DONATION

Since I'm asking favours -- told you this was a very personal post! 
Maybe you have seen this blog before, maybe not. On an earlier post I mentioned that I haven't been able to get permission for my adult sons, both blood donors for almost a decade, to donate blood to be used during my upcoming brain surgery. (Read Surgery update - scroll down a bit to the second paragraph under the heading "Meningioma")

Today I found that there is a special program where friends and strangers can donate blood in honour or remembrance of someone.

So this is my request: Since I would need about 2 litres of blood (4 pints) during my surgery next month, would a few people reading here be willing to go out to donate back to the pool, please? When you do, you can mention your intentions to the person tending to you, and you will be given a special card to mail if you wish to do that. Of course anonymous donations work too!

Thank you from the bottom of my heart for replenishing the pool, in honour of a friend or loved one. (If you can't donate blood due to previous illness or disease, there is a program to donate blood for research. LINK )

Donate blood in honour of someone: Program link

Thank you for reading and sharing this post. Links are below; just click the one(s) you wish to use.


Monday, August 10, 2015

Surgery updates

Thyroid

Less than a month after his partial thyroidectomy, hubby already played softball again! The healing is amazing.
Below is a combination picture - taken less than 24 hours apart. The first one was taken shortly after surgery. Tape measure is around his neck to check for any swelling.
The next day, the tape measure was gone and he looked a little bit more "there"! The draining tube was removed about 24 hours after surgery and only left a small scab.

A week later, we had to go in for the stitches to be removed. Since it was only a single stitch, sort of like a blanket stitch (new to us!) I hardly had time to get the camera in place for a picture! He said it was more trouble to have the steri strips being pulled off than for the stitch to be removed.

The surgeon was happy with the result after seven days. We are still waiting for the pathology results of the removed half of the thyroid, though. I was hoping to have that ready and was holding off on this update for that reason.

Picture to the right was taken a week and one day after surgery, only hours after the stitch was removed.

Thank you for all the messages of concern and offers of help!

Meningioma


If you read a previous entry on this blog, you would know that I was diagnosed with a brain tumour, called a meningioma. My surgery is still scheduled for September 8 at Trillium hospital. By all accounts, their neurological department is excellent. (And it seems they have better coffee than Brampton Civic, which will be a plus! But I'm packing my rooibos teabags anyway.)

Realized last week I might need blood transfusion for my surgery. My sons have been blood donors for about 8 years, and I can use both their groups. I am A+; so is younger son and elder son is O+.  Called to ask if they can donate blood to be used for me, found out I would need about 2 litres during surgery. So that is in the works.

Blood Services Canada said  a parent can donate blood to be used for a child's surgery, but an adult child can't donate blood for a parent's surgery. Silly and makes utterly no sense! Now the surgeon's office is trying to let me know how we can go about using the boys' blood. Voicemail was garbled , though. I said if it is too much trouble, I'd just ask my sons and a few friends to go donate blood, which means the general pool gets replenished.

Oh yes, and the hair! So may people asked if I will have to shave my head. The surgeon said they'll shave what they need, but I decided to have fun with it. So did the hairdresser. She created a funky, spiky hairstyle, which will be cut once more before surgery and go quite a bit shorter. Another friend is making me a very bright hat so that people don't have to get sick when they look at me after surgery!

Here is a picture with a friend on the city plaza while we were enjoying the Farmer's Market. I'm the one on the right .... What do you think?

I'm still playing with it and learning how to do different things with the spikes. Part of it is adding some colour, using cream eye shadow. It works, and washes out with shampoo.

As for symptoms - headaches, fatigue (especially while working on the computer) and sometimes an unexplained twitch of the leg or arm might all have to do with the mushroom I'm growing in my head.

A very interesting year for us, indeed! 
Thank you to friends and family near and far, who carry us in thought and prayer. 

Wednesday, July 15, 2015

One surgery down!

(Posted from iPad so annoyed with limitations.  Forgive mistakes! Please hit F5 or update to see any edits) 

Thank you so much to many people all over the world for messages and care, prayer circles and more after the previous two posts on this blog.  We appreciate each one and stand amazed at the concern of friends and strangers.

Arno had his surgery today.  All went well.  I spoke to the surgeon afterwards and he was pleased with the outcome.

Only the left side of the thyroid was removed, which is good news indeed.  The right side was left and will be tested in about six weeks.  If enough hormones are manufactured, he won't have to go on medication.

The part that was removed, will be tested and the results will be back in about ten days.  If it is clear (no cancer) a second surgery to remove the rest of the thyroid won't be necessary.

The stitches will be removed in a week and the wound checked.  There is currently a drain to remove any fluid.  He is staying the night because of the C-pap machine (sleep apnea) and should be discharged by lunchtime tomorrow if the doctor is satisfied. Then he has to take it easy for a few days.  No lifting things, no driving, no stress, rest, etc.

For those who might not know, the thyroid is like a butterfly around the throat. See image below.


From Thyroid Gland



Arno's incision today with draining tube in place.


Tuesday, July 07, 2015

Consultation with the Neurosurgeon

Hello, everyone!

First of all, thank you for all of the calls and messages wishing Marlene well today! They have not gone unnoticed but she figured it would be easier to do a big post so that everyone could get an update at the same time.

Marlene and Arno went to the Queensway hospital this afternoon to finally have a neurosurgeon review her MRIs and give his opinion on what her next steps should be.  After a bit of a wait while he took a look at her scans, he was to the point and up front with the situation. An MRI from back in 2008 did not show any signs of the growth, meaning that this is a much more recent development but due to its location on Marlene's brain, there is some risk in removal (continued or increased seizures if the tumor cannot be removed in its entirety). She asked the doctor what he would recommend if it was someone close to him and he confirmed that he would still advise removal over leaving the mass to most likely grow further and possibly cause more problems down the road.

At this time, there is an appointment made for Sept 8th for surgery, but updates will be provided between now and then if it requires rescheduling.

Thanks again for everyone's well wishes! We will continue to update this blog as we get more news/developments, but please feel free to leave comments for Marlene and Arno during this process.


Friday, July 03, 2015

Mah Mushroom

People who visit this blog might have noticed the lack of regular posts the last few months. I stepped back from the activism to get help for Lyme patients, but thank the Lyme community humbly for a tribute they posted. A lot of things have been happening these last months, and this July, many of those might finally come to a head. I'll try to summarize in a succinct way! There are a few headings here below; skip or read at your own discretion, please.  :-)

The bruising

For more than a year now, weird, large, very sore black bruises have been appearing on my legs without any trauma.
I've once again been referred for many tests, including oncology / hematology. Blood taken - 18 vials on Halloween (how's that for irony! LOL) and then referred to the McMaster University Medical Centre in Hamilton for yet more tests. Twelve vials the first time and ten vials a month later. They are sure it is vasculitis, probably a complication of my Rheumatoid Arthritis (RA) but my rheumatologist doesn't agree. Those tests and visits kept me busy with no real answers, so I called it quits. I'm happy. Forget a diagnosis and I'll just deal with the bruises. And no, hubby didn't beat me up or kick me back at night when my Restless Leg kicks in! (Pun definitely intended.)

The boob

In April I had a mammogram as part of the Ontario screening program and was called back a week later for an ultrasound. There were "things" found in my left breast and I have to go back in October to have that checked out again. No worries, though, I wasn't going to post a picture of THAT!

The lump

In September last year, while on vacation, I noticed a large lump on the left of Arno's throat. We were out of the country but managed to see a doctor who called in a second opinion. Back in Canada, ultrasound confirmed a 7 cm (2.75 inch) nodule on his thyroid, and two more nodules on the right side.
 A needle biopsy found no cancer. The surgeon said the lump has to come out, though, and because it is so big, cancer is not completely excluded through the biopsy. However, even if it is cancer, it is very slow growing and should not be life-threatening. We have now been waiting nine months for a surgery date.

The collapse

In the middle of June, while we were busy making a batch of antipasto to have on hand for the summer, I felt weird. This was around 5 pm on Sunday night, June 14. While walking upstairs to collect laundry, I suddenly couldn't see, the stairs were jumping all over the place in my vision, I felt very confused and sort of out of it. My left side felt as if it was under water and had to be dragged along. On the landing I was even more confused, forgetting where I was going. I walked to the bathroom but had "forgotten" I had a left side and walked smack-dab and left boob first into the door jamb, rattling the house. Arno thought I had fallen down but I kept calling to him I couldn't see. I turned around, minus laundry, and tried going back downstairs - no, I don't know why! Told you I was confused! Almost fell off the stairs several times because I just couldn't focus. Back in the kitchen I felt like a padlock was hooked into my left cheek, pulling my whole face down. I tried to talk to Arno but he couldn't make out what I was saying, since my speech was slurred.

He made me sit on the floor while he finished bottling the sauce, where I looked up the symptoms for a stroke or mini-stroke (TIA). He drove me to Emergency where we were processed very quickly and into a room with ECG within half an hour. Two doctors gave him heck for not calling an ambulance - which would have taken me to the Stroke Centre. We didn't even know it existed.

The next test was a CT scan, which found a mass in the brain. Then an ultrasound of the neck veins. Around 11 pm yet another doctor came by and mentioned a few possible diagnoses. They were going to keep me for an MRI. Arno went home, and I spent most of the night on a cot in the busy ER, then a few hours in a corner of a hallway near the nurses' station in the Neuro ward.

An MRI confirmed a brain tumour called a Meningioma. I just dubbed it Mah Mushroom. Growing quietly in the dark. Yes, I had symptoms over the last few months but have mostly ignored them. I am even using a bath chair and handle, borrowed from a friend a few months ago because I felt unstable while taking a shower. A few times the headaches reduced me to tears. A feeling of a vice screwed tightly around my head has been ongoing for several months, as well as visual disturbances. I think my blocked left ear might also have something to do with it.

A Neurologist came by around 10 pm on the Monday evening. He spent a long time and said I have to be put on anti-convulsants to avoid seizures. What I had was not a stroke, but a seizure due to pressure on the brain. I was in hospital for four days, and the seizures continued on the left side until the meds kicked in by the Tuesday evening.

After just a week, my old bod went into its usual shenanigans and rejected the meds. I had hives, spots, galloping heartbeat, headache, sweats and shakes. So of course the meds had to be changed - or live with the seizures, which was not an option according to the doctor. I've now been on new meds a week, and so far, so good.

The tumour is near mid center membrane in brain, on top of the head, so might involve some of the large veins, possibly the bone of the falx and other things.

On July 7 I have an appointment with a neurosurgeon who will talk about the following steps, surgery or not, when and where.

I had to return my driver's license and am grounded until such a time as my doctor deems it would be safe to drive again. It might be several months, up to a year. But I have AMAZING friends who all swooped in and offered to drive me / us to and from hospital, to and from appointments, shopping, church and the like. How blessed are we???

Oh and guess what?? While I was in hospital, Arno finally got the call! His surgery is on July 15. What an interesting month for us!

Not knowing how things might progress over the next few days or weeks, I've set up a ......

Guest Author

Jenni - She's family, she is articulate and she is an artist. But most importantly, she said "yes" when I asked if she'd take on the job! When / if I have surgery, I might be out of it for a day or two. Friends (bless them!) and family want to be kept updated, hence asking Jenni to do the honours. The posts might be graphic, might include pictures, might sometimes be meant only for family and close friends. In that case, a post might be password protected for a while. Lots of "mights", I know, but guess that is where we are at this particular time.

Please check out Jenni's artwork! She has a website, a Tumblr account, Instagram and a deviantArt account. Her Bio is on The Caffeinated Rose Bride, with other links at the bottom of that post.
Jenni - as I see her (copyright Jenni)
The way she says she is! (copyright Jenni)

If you are still reading, take a break for bravery!
But thank you for caring. See you on the flip side.  :-)


Saturday, March 28, 2015

Liberals turn their back on Lyme Disease



If anyone is still reading this blog, I'll just quote two pieces of correspondence here and leave you to make your own assumptions, draw your own conclusions, and realize that the fight of Lyme Disease Patients in Canada is far from over.

In 2013, shortly after Kathleen Wynne became the new premier of Ontario, I wrote to her to implore her to take the unfair treatment (or non-treatment) of Lyme Disease patients into consideration.

In April 2013 I received the following email, and I quote without ANY changes other than adding the date:

4/4/13:  Thank you for taking the time to send your online message regarding Lyme disease. I appreciate hearing about your experience and have noted your concerns.
The happiness and health of Ontario residents must be enshrined. That is why our government will continue to build the strongest and most innovative health care system in the world, so that hospitals and research institutions keep setting international standards and saving innumerable lives.
Thank you again for contacting me. Please accept my best wishes.

Kathleen Wynne
Premier of Ontario  
Kathleen Wynne

Yet, this morning, this message appeared in my Inbox:

 wrote on March 28, 2015:

As many of you will know, I, along with many members of both the PC and NDP parties, have been attempting to address the serious health concerns in our system, especially with regards to Lyme Disease diagnosis and treatment. One of these attempts is Bill 27, Toby Barrett's private members bill, which was passed by all parties during Second Reading on November 20 2014. 
It saddens me to inform you that our attempts have been dealt a grave blow this week in Committee. 
Toby Barrett's Bill 27 was scheduled to have public hearings and consideration beginning April 28th and be completed in May. All committee members agreed to this on February 18, and it was also agreed that after these hearings the bill would then proceed for Third Reading. You can read the text of the agreement at the bottom of this email. 
On March 24th the Liberal members of the Committee, under the direction of  Premier Wynne and her House Leader, Yasir Naqvi, ordered the Liberal members of the committee to strike down the Feb 18 agreement. 
As it now stands, Bill 27 will probably never be called for Third and Final Reading without a significant change in the Liberal's hearts. 
I encourage you, your family, and your friends to help change these Liberal hearts by emailing and phoning the following people and expressing your views on how the Liberals are frustrating and obstructing all members of the Legislative Assembly. 
The Premier Kathleen Wynne can be reached at 416-325-1941or premier@ontario.ca

Hon. Yasir Naqvi,  Government House Leader can be reached at 613-722-6414or ynaqvi.mpp@liberal.ola.org
Minster of Health Eric Hoskins can be reached at 416-656-0943or  ehoskins.mpp@liberal.ola.org
Best regards,

Randy Hillier

P.S. As always, you can keep up to date with me on Facebook and Twitter.
Full Text of the Agreement:

That, prior to commencing consideration of Bills 12, 27 and 42, the Standing Committee on the Legislative Assembly, for a three-week period initially, to be reviewed after two weeks, conduct a review of the petition procedures currently in use at the Legislative Assembly of Ontario and the use of e-petitions in other jurisdictions; and
That the committee produce a report on the advantages and disadvantages of integrating e-petitions into the assembly’s existing petition procedures and recommend whether e-petitions should be implemented and, if so, which would be the best practical model; and
That, in order to assist the committee’s review, the Clerk and Deputy Clerk of the Legislative Assembly of Ontario be invited to appear before the committee, the table research office be instructed to provide background information on e-petitions and the committee hear from any other witnesses it deems relevant.
Following that, the committee will be looking at two weeks of Bill 12, three weeks of Bill 27 and two weeks of Bill 42.

Saturday, March 21, 2015

NO Brampton Lyme Awareness day planned for 2015

Today, March 21, was the first time anyone had asked about a possible Lyme Awareness Day in Brampton for 2015. It seems everyone is either busy with their own events, or dealing with other issues in their own lives.

My apologies. We are dealing with several health and business issues and there just is no energy left to arrange a formal Awareness Day this year.

I was thinking of maybe just doing a drop-in picnic or get-together informally in the park. I have T-shirts left from last year if that works for anyone. Possible dates available at this point to work with or arrange something low-key: May 2, May 9 or May 30, 2015.

Please check with your local town or city about any Lyme events, or arrange something yourself! All I did was go to the city to ask about a possible park, or you could ask a school or sports club for a venue. And then use friends, church members or family members with their own ideas to put together something that works for YOU.

From the onset, my personal mission has been to bring awareness and to get doctors to think about the human behind suffering patients. So much awareness was raised in the last years, and the law passed in Canada is proof of that!

THANK YOU, to all my friends and family who stood behind me and worked so hard to bring that dream to fruition. Now the lawmakers are on the bandwagon - let's hope and pray we get a Canadian Lyme Disease Act in place very soon! LINK


Blessings on your journey to health.


Friday, December 12, 2014

Senate Unanimously Passes Federal Framework on Lyme Disease Act


PRESS RELEASE  12 December 2014

Canadian Senate Unanimously Passes Elizabeth May’s Federal Framework on 
Lyme Disease Act 

OTTAWA - Elizabeth May’s Private Member’s Bill, C-442, the Federal Framework on Lyme Disease Act, was passed unanimously at third reading by the Senate the morning of Friday, December 12. The bill now awaits Royal Assent by the Governor General for it to become law.

Elizabeth May, O.C., M.P.

“I am so thankful to my colleagues in the Senate, especially the bill’s sponsor Senator Janis Johnson, for passing C-442,” said Elizabeth May, Leader of the Green Party of Canada and MP for Saanich-Gulf Islands. “This victory belongs to all Canadians coping with Lyme disease and their loved ones. This bill never would have been passed into law without their advocacy and willingness to tell their stories.”
First introduced in June 2012, Bill C-442 was passed unanimously with multi-partisan support in the House of Commons in June 2014.  It will establish a framework for collaboration between the federal, provincial and territorial Health Ministers, representatives of the medical community, and patients’ groups to promote greater awareness and prevention of Lyme disease, to address the challenges of timely diagnosis and treatment, and to push for further research.

“The hard work of Minister of Health, Rona Ambrose and the entire Lyme community were instrumental in making this bill a reality. I am also grateful to Senator Kelvin Olgilvie, Chair of the Standing Senate Committee on Social Affairs, Science and Technology, who helped to move C-442 through the committee process, after it was delayed by the shooting on October 22,” added Ms. May.

“C-442 is now the first piece of Green Party legislation in Canadian history,” stated Bruce Hyer, Deputy Leader of the Green Party of Canada and MP for Thunder Bay – Superior North.  “I am proud of the way Elizabeth was able to work across party lines to pass the first Green Party bill. The passage of this bill will make such a tangible difference for those dealing with Lyme disease.”

Although it is rare for private member’s bills to be passed through both the House and Senate, Bill C-442 has received multi-partisan support from Senators and Parliamentarians, in addition to the Canadian Medical Association, the College of Family Physicians of Canada, and the Canadian Lyme Disease Foundation.

“Now that the bill has passed, I look forward to working with all relevant interest groups and governments, under the guidance of Health Minister Ambrose, for the national conference to develop the federal framework to deal with this dreadful illness,” concluded Elizabeth May.

http://elizabethmaymp.ca/
-30-

Thursday, December 11, 2014

Lyme Disease before Canadian Senate December 12


Advisory
Elizabeth May's Lyme Disease Legislation Expected to Move to Third Reading in Senate Tomorrow
OTTAWA  –  The Senate is expected to take up Elizabeth May's Private Member's Bill C-442, the Federal Framework on Lyme Disease Act, at third reading tomorrow
The Senate Standing Committee on Social Affairs, Science and Technology unanimously referred the unamended bill to the Senate on December 10.

Third reading is the final stage of a bill's passage through the Senate. If the bill passes third reading, it will await Royal Assent, at which point it will become law.

Date: Friday, December 12, 2014
Time: Between 9:00 AM and 1:00 PM EST
Location: Senate, Ottawa ON
Please note that the meeting is subject to change. Further details will be provided as they become available.
To access a live audio stream of the Senate debate, please visit:

Earlier news ---

Bill C-442 is carried in the Senate:
Listen to testimony of December 3rd, 2014 as posted on CanLyme's website
Elizabeth May, MP  (begins after intro)
Jim Wilson, CanLyme  (starts at 56:18 on time-bar)
Dr. William Bowie, AMMI,  (starts at 1:03:55 on time-bar)


Other stories to read:

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