Some updates from developments today:
- The date for Marika's Celebration of Life will be Saturday October 18th; it will take place at Goward House from 2pm to 5pm. http://www.gowardhouse.com/ The space has a limited capacity, and so we will be asking all those wishing to attend to RSVP at marika.ainley@shaw.ca We will fill you in on other details as they evolve.
- An obituary was posted on the Concordia University website at http://news.concordia.ca/notices/013438.shtml . As the page notes, a fuller obituary will be published in the October 9 issue of the Concordia Journal.
- We are awaiting pictures to be sent of the flags flown at half-mast at UNBC in Prince George - you can send them to mark@markainley.com . Thanks to Helen and the others who took them! We will be posting them here when they arrive.
- We'd also like to thank everyone for their generosity in showing their sympathy, and ask that in lieu of flowers donations can be made to Victoria Hospice Society, 1952 Bay Street, Victoria, V8R 1J8 http://www.victoriahospice.org/
Tuesday, September 30, 2008
Sunday, September 28, 2008
Serene Sunday
Quality family time continued over the weekend. David, Vicky, and Mark spent sunny time in some of Mum's favourite Victoria locations - Olive Olio's cafe (which is a great suntrap), Cattle Point, the Chinese Cemetary, and Willow's Beach.
We also went to Goward House to see the show that Studio Madrona, Mum's painting group, has dedicated to her. We were of course quite teary as we walked in to see a huge picture of Mum on the back wall announcing the dedication. All of her paintings had been placed together in a room to the side of the main exhibit hall, along with an easel featuring her bio. We sat with a couple of her friends who were visiting Goward House at the time and had a lovely chat.
For more information on the show, click here: http://www.gowardhouse.com/ArtShow2008-10.html
Click on the picture on the top left of the page to open up a page devoted to Mum, with her bio. Or click here: http://www.gowardhouse.com/ArtShowFile2008-10/Memorial.html
Inquiries are underway for the preparation of the Celebration of Life that we will hold in her honour. Stay tuned here for details shortly.
Also, we were informed via the blog that the flag will fly at half-mast for Marika at UNBC. If someone local could take a picture for us, we'd appreciate it.
Her obituary for the newspapers is being finalized and we will also be posting it here. We have decided upon suggesting that donations in her memory be made to Victoria Hospice at the Royal Jubilee Hospital in Victoria http://www.victoriahospice.org/
We also went to Goward House to see the show that Studio Madrona, Mum's painting group, has dedicated to her. We were of course quite teary as we walked in to see a huge picture of Mum on the back wall announcing the dedication. All of her paintings had been placed together in a room to the side of the main exhibit hall, along with an easel featuring her bio. We sat with a couple of her friends who were visiting Goward House at the time and had a lovely chat.
For more information on the show, click here: http://www.gowardhouse.com/ArtShow2008-10.html
Click on the picture on the top left of the page to open up a page devoted to Mum, with her bio. Or click here: http://www.gowardhouse.com/ArtShowFile2008-10/Memorial.html
Inquiries are underway for the preparation of the Celebration of Life that we will hold in her honour. Stay tuned here for details shortly.
Also, we were informed via the blog that the flag will fly at half-mast for Marika at UNBC. If someone local could take a picture for us, we'd appreciate it.
Her obituary for the newspapers is being finalized and we will also be posting it here. We have decided upon suggesting that donations in her memory be made to Victoria Hospice at the Royal Jubilee Hospital in Victoria http://www.victoriahospice.org/
Friday Review
For those who would like to know more about Marika's quite beautiful passing over, please read. If you feel that it will be upsetting to you, wait for the next posting that will cover more practical things. We are starting to surface and will slowly be taking phone calls, though it may take us time to return messages.
On Friday, Marika's breathing was quite pronounced - one might say she was snoring. She was completely unconscious, eyes not opening at all. Her breathing was quite rapid, and our dear Doctor Wilde from Hebden Bridge came in and said that she was very peaceful and that with these changes she couldn't continue much longer. This true gentleman's serene and compassionate bedside manner made it easier for us to take the news.
At about a quarter to five pm, we all got the feeling that we wanted no visitors. We put a sign on the door to that effect and pulled the door to. Mum's breathing was changing a lot, getting shallower but still fast. Her feet got quite cold, and her hands were losing their warmth. Vicky, Dad, and Mark got closer to the bed and were all holding a hand, or touching her face. At 5:30, the phone rang - not exactly what we wanted... but it was Gyongyi on the line from Montreal, and we then realized how perfect this was. We told her the time was close, and held the phone up to Mum's ear so she could hear her sister speak to her; we then told Gyongyi to stay on the line and we put the phone on Mum's chest. Marika then took a few more spaced breaths and then simply stopped.
There was an unreal quality to the fact that what had happened had happened. Gyongyi's magnificent timing made it all seem so perfectly planned - she had raced home with the urgent feeling that she needed to call as soon as possible. Gyongyi and Marika's mother had saved them in the war by instinctively knowing to leave a building that was to about be bombed. Demonstrating more of that intuition, Dad had earlier in the week made a comment that 'no one can tell us it will happen at 5:24 on a Friday' - it in fact happened at 5:34 on Friday.
We had a good few cries and stayed with her for a period before we alerted the staff, who were very compassionate and supportive, telling us to take as much time as we wanted. We stayed for a bit but then decided to do what was inevitable and start cleaning the room, removing the dozens of cards and the pieces of Mum's art that had set the tone for her space.
For the past few days, I could not reconcile myself that the body in front of me was my mother - she did not have her character or her lifeforce in it. I still gave her a goodbye kiss, as we all did, but felt that virtual hugs would be more abundant and forthcoming.
She was unbelievably tough to hang on as long as she did - everyone who knew her knows she was a tough cookie. But when it was time to let go, she did, surrounded by her immediate family. We are so sad to have her leave us but so grateful that her suffering doesn't need to go on, and that in fact at the end she was not suffering. She had been in far more pain when fighting the symptoms of the chemo - what landed her in hospital to begin with - and she recovered amazingly well from that process. Her bravery there was particularly noticeable - the symptoms were so horrific that I doubted whether I could have dealt with it with a fraction of her grace and fortitude.
Thank you all for being part of the journey. We have all appreciated your comments and good wishes, your contributions and kindness.
On Friday, Marika's breathing was quite pronounced - one might say she was snoring. She was completely unconscious, eyes not opening at all. Her breathing was quite rapid, and our dear Doctor Wilde from Hebden Bridge came in and said that she was very peaceful and that with these changes she couldn't continue much longer. This true gentleman's serene and compassionate bedside manner made it easier for us to take the news.
At about a quarter to five pm, we all got the feeling that we wanted no visitors. We put a sign on the door to that effect and pulled the door to. Mum's breathing was changing a lot, getting shallower but still fast. Her feet got quite cold, and her hands were losing their warmth. Vicky, Dad, and Mark got closer to the bed and were all holding a hand, or touching her face. At 5:30, the phone rang - not exactly what we wanted... but it was Gyongyi on the line from Montreal, and we then realized how perfect this was. We told her the time was close, and held the phone up to Mum's ear so she could hear her sister speak to her; we then told Gyongyi to stay on the line and we put the phone on Mum's chest. Marika then took a few more spaced breaths and then simply stopped.
There was an unreal quality to the fact that what had happened had happened. Gyongyi's magnificent timing made it all seem so perfectly planned - she had raced home with the urgent feeling that she needed to call as soon as possible. Gyongyi and Marika's mother had saved them in the war by instinctively knowing to leave a building that was to about be bombed. Demonstrating more of that intuition, Dad had earlier in the week made a comment that 'no one can tell us it will happen at 5:24 on a Friday' - it in fact happened at 5:34 on Friday.
We had a good few cries and stayed with her for a period before we alerted the staff, who were very compassionate and supportive, telling us to take as much time as we wanted. We stayed for a bit but then decided to do what was inevitable and start cleaning the room, removing the dozens of cards and the pieces of Mum's art that had set the tone for her space.
For the past few days, I could not reconcile myself that the body in front of me was my mother - she did not have her character or her lifeforce in it. I still gave her a goodbye kiss, as we all did, but felt that virtual hugs would be more abundant and forthcoming.
She was unbelievably tough to hang on as long as she did - everyone who knew her knows she was a tough cookie. But when it was time to let go, she did, surrounded by her immediate family. We are so sad to have her leave us but so grateful that her suffering doesn't need to go on, and that in fact at the end she was not suffering. She had been in far more pain when fighting the symptoms of the chemo - what landed her in hospital to begin with - and she recovered amazingly well from that process. Her bravery there was particularly noticeable - the symptoms were so horrific that I doubted whether I could have dealt with it with a fraction of her grace and fortitude.
Thank you all for being part of the journey. We have all appreciated your comments and good wishes, your contributions and kindness.
Friday, September 26, 2008
Marika Veronika Gosztonyi Ainley
December 4, 1937 - September 26, 2008
Marika peacefully took her last breath at 5:34 pm, surrounded by loved ones: her husband David, daughter Vicky, and son Mark, with her sister Gyongyi on a phone that was lying on her chest.
We are only taking phone calls from family at this time.
More to be posted in the coming days. Thank you for your love, support, and contributions.
Thursday, September 25, 2008
Thursday
Mum was asleep the whole day today - her eyes did not open. She is looking very restful. Her heart is working overtime as various body functions shut down, but the result is that her cheeks have a warm glow, and she was looking very peaceful in bed. She was more unsettled a few days ago, as she waking frequently and occasionally calling out, as well as coughing.
We followed the suggestions of a number of people who have worked in palliative care by speaking with Mum individually to give her our blessings to move on; often people in this process can hold on for their family's sake. We first read some farewell messages that had been privately emailed and posted on the blog, and then each had some moments with her.
A nurse told us that with her current breathing pattern and other conditions, we were likely looking at 24 to 48 hours.
We apologize that we will not be able to call all of her many friends to personally inform them when she has passed, and know that it will doubtless be upsetting to read of it online. We know that it is coming, and simply wish for her to have a peaceful transition - it will be harder for those of us left behind.
At dinner tonight we talked about how quickly the change took place. Mark was visiting 4 weeks ago tonight, the day that Mum had the chemo treatment that would send her to hospital a few days later. That she managed to bounce back from that to be able to speak and spend quality time with us was a blessing, just as it was a blessing to have her in our lives to begin with. The kind words and support of her friends and family around the world throughout this process is evidence of how much she means to all of us, and we are grateful to all of you. Mum herself acknowledged how in this process she came to realize how much love she had around her.
We followed the suggestions of a number of people who have worked in palliative care by speaking with Mum individually to give her our blessings to move on; often people in this process can hold on for their family's sake. We first read some farewell messages that had been privately emailed and posted on the blog, and then each had some moments with her.
A nurse told us that with her current breathing pattern and other conditions, we were likely looking at 24 to 48 hours.
We apologize that we will not be able to call all of her many friends to personally inform them when she has passed, and know that it will doubtless be upsetting to read of it online. We know that it is coming, and simply wish for her to have a peaceful transition - it will be harder for those of us left behind.
At dinner tonight we talked about how quickly the change took place. Mark was visiting 4 weeks ago tonight, the day that Mum had the chemo treatment that would send her to hospital a few days later. That she managed to bounce back from that to be able to speak and spend quality time with us was a blessing, just as it was a blessing to have her in our lives to begin with. The kind words and support of her friends and family around the world throughout this process is evidence of how much she means to all of us, and we are grateful to all of you. Mum herself acknowledged how in this process she came to realize how much love she had around her.
Wednesday, September 24, 2008
Wednesday
Mum had a mostly sleepy day today - some activity like yesterday, but not as much. She still has strength in her and is at times able to move herself, but she is mostly quite still. The degree of changes since last week is just unbelievable. One nurse said some people can go to these extremes in one day, but it is still such a shift.
Julian Rowan visited today with his wife and had a few moments with her, but she was less responsive than yesterday. He was so pleased about the gift of the ashtray that had suddenly shown up, and of course so sorry to see Mum in this state.
Plans are underway to dedicate the upcoming Studio Madrona exhibit at Goward House to Mum. As Marsha wrote, "Hopefully this positive emphasis will resonate with her. Maureen and Alice (curators of this show) are planning to hang all of your mother's pieces together. As you know, her work is powerful, not only in content and message, but also in style. When shown together, the spirit of her works will fill that space of Goward House." This means a lot to all of us, as Mum's art was really such an important part of how she has expressed herself in recent years, and her friendship with the group at Goward House has been a key element in her life in Victoria.
Among the few words Mum stated when she was in rough shape a few days after the chemo treatment was "Celebration of life...Goward House...", and she made it clear that she wanted not a traditional memorial service but a celebration of her life to be held at Goward House. Her friend Gerry Dirks had been celebrated in a similar way after his recent passing, and she was clear this was how she wanted to be remembered - you know Mum, she loves celebrations and parties and a positive focus! Until the family arranges that celebration - she hasn't passed yet, after all - the art exhibition starting soon will be a wonderful way to honour her. Details of the exhibition will be posted here shortly.
Julian Rowan visited today with his wife and had a few moments with her, but she was less responsive than yesterday. He was so pleased about the gift of the ashtray that had suddenly shown up, and of course so sorry to see Mum in this state.
Plans are underway to dedicate the upcoming Studio Madrona exhibit at Goward House to Mum. As Marsha wrote, "Hopefully this positive emphasis will resonate with her. Maureen and Alice (curators of this show) are planning to hang all of your mother's pieces together. As you know, her work is powerful, not only in content and message, but also in style. When shown together, the spirit of her works will fill that space of Goward House." This means a lot to all of us, as Mum's art was really such an important part of how she has expressed herself in recent years, and her friendship with the group at Goward House has been a key element in her life in Victoria.
Among the few words Mum stated when she was in rough shape a few days after the chemo treatment was "Celebration of life...Goward House...", and she made it clear that she wanted not a traditional memorial service but a celebration of her life to be held at Goward House. Her friend Gerry Dirks had been celebrated in a similar way after his recent passing, and she was clear this was how she wanted to be remembered - you know Mum, she loves celebrations and parties and a positive focus! Until the family arranges that celebration - she hasn't passed yet, after all - the art exhibition starting soon will be a wonderful way to honour her. Details of the exhibition will be posted here shortly.
Tuesday, September 23, 2008
Tuesday night
Mum continued to be more active today than yesterday. She would wake more and clear her throat. She actually managed to turn herself onto her side when we weren't in the room - she's got more strength than she shows. "She's still keeping us on our toes and still running the show," the cheery nurse said. (The staff truly are exceptional.) Vicky arrived and the pampering continued.
And another Rowan connection today - the wife of Rowan's son Julian came in... the same day Mum had been gifted with a hand-carved ashtray made by Rowan?!? What kind of incredible timing is this? Mum's face lit up again, much as it had when she saw Joanne's face this morning. It seems that older memories are triggering a very strong response from her; I mumbled something in Hungarian (which I cannot speak, other than a few words) and she responded quickly.
Mum is so tough that she continues to fight, and it is challenging to see her in this state. She is not comfortable per se, but clearly as comfortable as circumstances can allow. I am grateful that my memories of her are so powerful that these will supersede her last days.
I had a lucid dream experience with Mum in the early hours of Tuesday - I awoke in their apartment (but in the dream, as real as it felt) to find her, Dad, and Vicky all there. She was in good health, looking around, and energized. It was wonderful to sense her presence so fully. I had told her the previous day that she could always find a way to communicate with me, and I think she did.
The nurse called at 10pm Tuesday night at our request, and said she was resting well. The doctor said they are checked regularly, and when no family is present the nurses often sit with the patients for periods of time. She is being well looked after.
And another Rowan connection today - the wife of Rowan's son Julian came in... the same day Mum had been gifted with a hand-carved ashtray made by Rowan?!? What kind of incredible timing is this? Mum's face lit up again, much as it had when she saw Joanne's face this morning. It seems that older memories are triggering a very strong response from her; I mumbled something in Hungarian (which I cannot speak, other than a few words) and she responded quickly.
Mum is so tough that she continues to fight, and it is challenging to see her in this state. She is not comfortable per se, but clearly as comfortable as circumstances can allow. I am grateful that my memories of her are so powerful that these will supersede her last days.
I had a lucid dream experience with Mum in the early hours of Tuesday - I awoke in their apartment (but in the dream, as real as it felt) to find her, Dad, and Vicky all there. She was in good health, looking around, and energized. It was wonderful to sense her presence so fully. I had told her the previous day that she could always find a way to communicate with me, and I think she did.
The nurse called at 10pm Tuesday night at our request, and said she was resting well. The doctor said they are checked regularly, and when no family is present the nurses often sit with the patients for periods of time. She is being well looked after.
Tuesday Midday
Mum was much more responsive this morning - she was opening her eyes and we got glimmers of recognition. She is showing some moments of strength in her weakness, with a tight grip of the hand or the occasional attempt to sit up. When her friend Joanne from Prince George showed up, however, her face lit up and she smiled - very happy to see a friendly face from a while back! This was the first glimpse of her peronsality that had shown up for a while. Another came when she was lying with one finger above her lip: I said, "You're looking pensive", and she did a hand-swat while raising her eyebrows. There is more of her present than we can realize, and we are making an effort to continue to speak as if she hears everything, because we think she does.
Some of the synchronicity has been incredible. A lovely fellow emailed Mum just yesterday to say he had an ashtray that had been made by William Rowan (whose biography Mum wrote) that he wanted to give to her. We had a quick email exchange and he dropped it off at the hospice for us today - he was of course upset that she is as poorly as she is, but happy to have made the connection with us. Apparently he had taken over Rowan's office and he had left him his ashtray and pipe - and now they are in Mum's room! Thanks, George!
Vicky will be here this afternoon; Mark is still undecided about heading back to Vancouver for his dental surgery Wednesday morning to fix a tooth that started disintegrating a couple of weeks ago (it all happens at once, doesn't it).
Some of the synchronicity has been incredible. A lovely fellow emailed Mum just yesterday to say he had an ashtray that had been made by William Rowan (whose biography Mum wrote) that he wanted to give to her. We had a quick email exchange and he dropped it off at the hospice for us today - he was of course upset that she is as poorly as she is, but happy to have made the connection with us. Apparently he had taken over Rowan's office and he had left him his ashtray and pipe - and now they are in Mum's room! Thanks, George!
Vicky will be here this afternoon; Mark is still undecided about heading back to Vancouver for his dental surgery Wednesday morning to fix a tooth that started disintegrating a couple of weeks ago (it all happens at once, doesn't it).
Monday, September 22, 2008
Monday Afternoon
It is incredible how quickly things change. I was last here on Thursday morning; Mum was quite chatty Wednesday, and getting more tired on Thursday. Today, a mere 4 days later, she is really a shadow of herself. She is looking gaunt and is simply resting. She occasionally stirs, and she did open her eyes, but it is unclear how much is was aware of where she was or what is going on. We had been told that she would simply get more tired and sleep more and more, and that this is a peaceful way to go - we didn't think it would happen this quickly and suddenly, though.
I had a chance to speak with her alone, knowing that she can hear even if there are no external signs of that. My friend Naomi had given me three gemstones to give Mum, related to Love, Emotions, and Communication. Mum had the velvet bag in her hand as I spoke with her. It's now on her pillow, her stuffed platypus and orca lying beside her body as she rests.
I've been told by people who have been through the same thing to remember her as she was and not as she is, and I certainly do have in mind more how I knew her and not this frail body - Marika was always more than who she was physically. It is difficult, however, not to see that vibrant lifeforce radiating as strongly.
The doctors here are really wonderful. That British fella from Hebden Bridge is in this week and was spending some time chatting with Dad, and I really have not seen Dad that lively and all in some time. It is very helpful to have someone here who raises his spirits, as he is certainly having a very challenging time.
Thank you all for your lovely messages - they are so very much appreciated.
I had a chance to speak with her alone, knowing that she can hear even if there are no external signs of that. My friend Naomi had given me three gemstones to give Mum, related to Love, Emotions, and Communication. Mum had the velvet bag in her hand as I spoke with her. It's now on her pillow, her stuffed platypus and orca lying beside her body as she rests.
I've been told by people who have been through the same thing to remember her as she was and not as she is, and I certainly do have in mind more how I knew her and not this frail body - Marika was always more than who she was physically. It is difficult, however, not to see that vibrant lifeforce radiating as strongly.
The doctors here are really wonderful. That British fella from Hebden Bridge is in this week and was spending some time chatting with Dad, and I really have not seen Dad that lively and all in some time. It is very helpful to have someone here who raises his spirits, as he is certainly having a very challenging time.
Thank you all for your lovely messages - they are so very much appreciated.
Sunday, September 21, 2008
Sunday September 21
Unfortunately, Mum's condition did not shift with the change in medication. She continues to be sleeping much of the time, occasionally waking but not for long. She is still doing her best, but the current scenario indicates what the doctors said would be happening as her body started to shut down. We are sorry to report that things are not looking good at the moment.
Mark will be heading to Victoria on Monday, and Vicky on Tuesday; Mark is scheduled to be in Vancouver to have dental surgery and teach on Wednesday, but that may change.
We are naturally very upset that Mum's continued valiant fight is not making the progress we had hoped to give her more time.
Please feel free to send comments to the family here; we will aim to verbally deliver messages to Marika, as we know she can hear us. We will read out bits of messages as we can.
And we will continue to keep you updated, and thank you for your thoughts and wishes.
Mark will be heading to Victoria on Monday, and Vicky on Tuesday; Mark is scheduled to be in Vancouver to have dental surgery and teach on Wednesday, but that may change.
We are naturally very upset that Mum's continued valiant fight is not making the progress we had hoped to give her more time.
Please feel free to send comments to the family here; we will aim to verbally deliver messages to Marika, as we know she can hear us. We will read out bits of messages as we can.
And we will continue to keep you updated, and thank you for your thoughts and wishes.
Saturday, September 20, 2008
Friday/Saturday
Friday and Saturday were quiet days for Mum. She was not speaking much - not really able to focus enough on it at times, which raised some concerns. A nurse finally pointed out today that a switch in pain medication might make her a bit more alert, and reviewed the case with a doctor and got the switch approved. This, of course, raises the question as to why it took so many days for this to cross someone's mind (and it's certainly not the first shortcoming in the very well-intentioned care that we've recognized). By Sunday we should know if there has been improvement.
While Mum has been resting a lot and fairly quiet when awake, she is good at using her arms to point out what she wants and needs when lacking the strength to speak. Her long-time friend and colleague Barbara is visiting from Montreal, and has been regaling Mum with stories so that she could lay back and be caught up on things without having to participate as actively.
Fingers are crossed that Mum will be able to be more awake and talkative, as we all know her and expect her to be.
While Mum has been resting a lot and fairly quiet when awake, she is good at using her arms to point out what she wants and needs when lacking the strength to speak. Her long-time friend and colleague Barbara is visiting from Montreal, and has been regaling Mum with stories so that she could lay back and be caught up on things without having to participate as actively.
Fingers are crossed that Mum will be able to be more awake and talkative, as we all know her and expect her to be.
Friday, September 19, 2008
Thursday in a nutshell
Quick update on yesterday - I had a quick visit with Mum before heading back to Vancouver and she was quite tired. She wasn't as chatty but of course still affectionate.
She got some great energy healing from Marilyn, and really slept most of the day. She is still giving her orders but a bit less verbally. Vicky and Dad of course spent lots of time with her - Vicky is still great at giving her the spa treatments!
She had some pain on her left side, and we suspect it might be the feeding tube - that is being looked into today.
Rest, rest, rest...it's what she needs at the moment.
She got some great energy healing from Marilyn, and really slept most of the day. She is still giving her orders but a bit less verbally. Vicky and Dad of course spent lots of time with her - Vicky is still great at giving her the spa treatments!
She had some pain on her left side, and we suspect it might be the feeding tube - that is being looked into today.
Rest, rest, rest...it's what she needs at the moment.
Wednesday, September 17, 2008
Wednesday
It was great to see Mum today - definitely a way better day than yesterday, much to everyone's relief. She continues to be very affectionate, and chatty about a number of things - art, friends and family, various things. Her energy levels do vary, though, and she needs to close her eyes and rest quite frequently. She is always concerned about those who are with her, shooing us out of the room while she rests lest we be bored - when I said we're not bored, she said "Quality, not quantity," and shut her eyes to rest.
There is in some way much more quality too - her throat is infinitely better and swallowing is no problem, which enables her to get her medicine down, as well as occasional chunks of ice cream and healthier drinks that I've provided. Vicky and I have some reservations about what they are continuing to pass off in the name of food and will be raising those concerns tomorrow (Vicky is here until the weekend, keeping up the manicures and pedicures, and more!).
Mum did some physio today - she sat up and did some resistance exercises to get some muscle tone back (her muscles have for obvious reasons very much atrophied). She was quite gung-ho and wanted to do some more but the physiotherapists wanted to make sure not to tire her out too much.
I brought Mum a stuffed Orca doll from BC Ferries - incredibly soft, much more so than the pillowcases at the hospital (not exactly 350 threadcount). She was happy to have a companion for the little platypus doll who also shares space in her bed when he doesn't get mysteriously relocated (he was hiding under the bed today). The nurses have commented that they never know what they'll find in her bed - a cell phone, platypus, make-up mirror...
The cards continue to arrive in hoardes and we're almost running out of room on the wall opposite her bed (as seen in the picture in an earlier post) so we'll have to start decorating other walls too, it seems. She is enjoying those and her paintings - she asked if I could bring her some rocks, noting that there must be some in the car. I told her there would definitely be some in the car, along with sand, sticks, mud-caked boots, crumpled tissue, half-packets of Halls, and squished boxes of band-aids. She laughed louder than she's been able to in ages.
I'll be flying back to Vancouver Thursday morning but will drop by to visit before leaving town - she seems to be in good shape in the mornings.
There is in some way much more quality too - her throat is infinitely better and swallowing is no problem, which enables her to get her medicine down, as well as occasional chunks of ice cream and healthier drinks that I've provided. Vicky and I have some reservations about what they are continuing to pass off in the name of food and will be raising those concerns tomorrow (Vicky is here until the weekend, keeping up the manicures and pedicures, and more!).
Mum did some physio today - she sat up and did some resistance exercises to get some muscle tone back (her muscles have for obvious reasons very much atrophied). She was quite gung-ho and wanted to do some more but the physiotherapists wanted to make sure not to tire her out too much.
I brought Mum a stuffed Orca doll from BC Ferries - incredibly soft, much more so than the pillowcases at the hospital (not exactly 350 threadcount). She was happy to have a companion for the little platypus doll who also shares space in her bed when he doesn't get mysteriously relocated (he was hiding under the bed today). The nurses have commented that they never know what they'll find in her bed - a cell phone, platypus, make-up mirror...
The cards continue to arrive in hoardes and we're almost running out of room on the wall opposite her bed (as seen in the picture in an earlier post) so we'll have to start decorating other walls too, it seems. She is enjoying those and her paintings - she asked if I could bring her some rocks, noting that there must be some in the car. I told her there would definitely be some in the car, along with sand, sticks, mud-caked boots, crumpled tissue, half-packets of Halls, and squished boxes of band-aids. She laughed louder than she's been able to in ages.
I'll be flying back to Vancouver Thursday morning but will drop by to visit before leaving town - she seems to be in good shape in the mornings.
Wednesday Wake-up
Mum made an early-morning phone call with some requests, so she's back in action! She was sounding chipper and with-it, so clearly the rest was something she needed. We are going to encourage her to continue to take the time she needs so that she can have the quality of awareness and energy she seems to be enjoying so far today. She was so enthusiastic to hear that I would be there in a few hours and I'm looking forward to seeing her.
More later.
More later.
Tuesday, September 16, 2008
Tuesday update
Mum had a very restful day - she had had a rather restless night. For some reason she hasn't been given a sleeping aid the past couple of nights. We didn't think that it would need to be requested but apparently so. As a result of this, and possibly also the tiredness that was said to be a side-effect of the radiation, she spent a lot of the day sleeping. There is of course concern that it is her health that is shifting, but it seems likely that with her medication, radiation, lack of sleep, and adjusting to getting food, her body needs a good rest.
She had a few surprise visitors over the past few days, which thrilled her no end, but it seems that she does not have the energy she thinks she does and she tires very quickly. It is really difficult to find a balance between having the stimulation that her mind desires and the rest that her body needs. As much as she enjoys seeing everyone, we are not encouraging visiting at the moment while she recovers some more strength and so we can see just what factors are impacting her energy levels. More visits from out-of-town have been planned and that might be all she can handle at the moment, as much as we'd all like it to be otherwise.
You can see photos below of the room - the area with the cards around the TV is directly opposite her bed (and her Feng Shui consultant son would like the area tidied up a bit!). The lit painting is in the window opposite the door, to the right of Mum's bed, and the three paintings are on the wall to the left of Mum's bed, immediately as one enters the room. They definitely give the room a personal touch!
She had a few surprise visitors over the past few days, which thrilled her no end, but it seems that she does not have the energy she thinks she does and she tires very quickly. It is really difficult to find a balance between having the stimulation that her mind desires and the rest that her body needs. As much as she enjoys seeing everyone, we are not encouraging visiting at the moment while she recovers some more strength and so we can see just what factors are impacting her energy levels. More visits from out-of-town have been planned and that might be all she can handle at the moment, as much as we'd all like it to be otherwise.
You can see photos below of the room - the area with the cards around the TV is directly opposite her bed (and her Feng Shui consultant son would like the area tidied up a bit!). The lit painting is in the window opposite the door, to the right of Mum's bed, and the three paintings are on the wall to the left of Mum's bed, immediately as one enters the room. They definitely give the room a personal touch!
Monday, September 15, 2008
Monday Report
Mum didn't sleep that well last night - her IV machine (did Romans call them Four Machines?) was beeping and the staff didn't respond super-quickly to it. She was also a little tired from her radiation treatment today. Some good news is that her hair has stopped falling out not because there is no more to fall out - presumably the ill effects of the previous chemo have slowed down now.
Mum's tastebuds were ticked with the delight of being able to not only taste but *swallow* today! She's still just having a little bit, but she loved the ice cream and coffee (on ice) that she had today. She tasted a bit of tofu but needed a bit of coffee mixed with it to give it some flavour. There is still some residual blistering on her tongue but her lips are much better and she is so happy at being able to swallow. She is also getting food through her tube so she is definitely more nourished.
She continues to be happy at the paintings in her space, including a watercolour given by Dorothy, and also the funny books that have been gifted by friends. Cards continue to arrive too, and blog comments printed or read over the phone.
Photos of the room to come soon!
Mum's tastebuds were ticked with the delight of being able to not only taste but *swallow* today! She's still just having a little bit, but she loved the ice cream and coffee (on ice) that she had today. She tasted a bit of tofu but needed a bit of coffee mixed with it to give it some flavour. There is still some residual blistering on her tongue but her lips are much better and she is so happy at being able to swallow. She is also getting food through her tube so she is definitely more nourished.
She continues to be happy at the paintings in her space, including a watercolour given by Dorothy, and also the funny books that have been gifted by friends. Cards continue to arrive too, and blog comments printed or read over the phone.
Photos of the room to come soon!
Sunday recap
A quick summary of Sunday - Mum started getting some food via her tube (no word on whether it was mashed Yorkshire Pud or Wiener Schnitzel) and was drinking some of the Aloe Juice that I brought her. She was sounding strong and clear already before this. This lack of food has been a good detox, and if anything has come out of it, it's very clear, soft skin!
More paintings have arrived to decorate the last remaining wall, and the cards continue to arrive and are all being put on the walls.
Sunday night was a family get-together watching New Tricks - the room has a much larger TV than that swing-around hospital one from last week.
More news to follow...
More paintings have arrived to decorate the last remaining wall, and the cards continue to arrive and are all being put on the walls.
Sunday night was a family get-together watching New Tricks - the room has a much larger TV than that swing-around hospital one from last week.
More news to follow...
Sunday, September 14, 2008
Saturday Post
It is challenging for me (Mark) to be away on the weekend but with lots of work it was unavoidable.
Mum had the feeding tube put in - unfortunately the hospital's schedule continues to be approximate at best. They told the family she was about to go in, so they all left, and then they were delayed again so she was alone in her room for a bit before they figured it out and went to visit again until she actually did leave. The procedure went well and the tube appears to be pretty unobtrusive. The earliest they can feed her is 24 hours after the tube was put in, so you can bet that we will be watching the clock and making sure that she gets some nourishment as soon as possible! Here's hoping they have liquid Yorkshire Pudding and Wiener Schnitzel, and no Jello!
Mum's voice was sounding stronger and she was even more lucid - amazing considering the medication they are giving her, her state of hunger, and her overall condition. She is making really interesting observations and her sense of humour is more paprika-like than ever. Could it be the morphine? Whatever the reason, we're enjoying it!
The weather continues to be exceptionally clear and sunny, which certainly helps keep one's mood up - the sunlight comes through one of Mum's paintings Robin Hood's Bay in North Yorkshire which has been placed in one of the window frames, and it just creates a glow in the room.
Gyongyi was flying out early Sunday so had her last visit on Saturday evening after a dinner with the family and a close friend. Vicky was sleeping over in the room on Saturday and will pass along updates later.
Mum had the feeding tube put in - unfortunately the hospital's schedule continues to be approximate at best. They told the family she was about to go in, so they all left, and then they were delayed again so she was alone in her room for a bit before they figured it out and went to visit again until she actually did leave. The procedure went well and the tube appears to be pretty unobtrusive. The earliest they can feed her is 24 hours after the tube was put in, so you can bet that we will be watching the clock and making sure that she gets some nourishment as soon as possible! Here's hoping they have liquid Yorkshire Pudding and Wiener Schnitzel, and no Jello!
Mum's voice was sounding stronger and she was even more lucid - amazing considering the medication they are giving her, her state of hunger, and her overall condition. She is making really interesting observations and her sense of humour is more paprika-like than ever. Could it be the morphine? Whatever the reason, we're enjoying it!
The weather continues to be exceptionally clear and sunny, which certainly helps keep one's mood up - the sunlight comes through one of Mum's paintings Robin Hood's Bay in North Yorkshire which has been placed in one of the window frames, and it just creates a glow in the room.
Gyongyi was flying out early Sunday so had her last visit on Saturday evening after a dinner with the family and a close friend. Vicky was sleeping over in the room on Saturday and will pass along updates later.
Friday, September 12, 2008
Please Post With Both First And Last Names
Mum has SO many friends that there is some overlap with the names - even if it seems a bit formal to put both names, please do so we can tell her whose comments we are reading before she has to use clues from the comments to put things together!
TGIF 2
Lots of time spent with Mum today. Vicky stayed overnight and both slept well, and Mum was awake and energized quite early on. She was going to be taken to have not only her radiation but also to have an ultrasound to make sure she was able to have a feeding tube put in, so Dad and I delayed our arrival.
She was in good spirits when she was wheeled back into her room - they have some interesting contraption set up from the ceiling that she holds onto to get into bed. Looks like a trapeze kind of thing, so we wonder if she'll be applying to Cirque du Soleil.
The throat is still really bad and she didn't get much more down today - it is incredible to think that she hasn't had anything substantial to eat for probably ten days now. Unfortunately, the procedure to install the tube had to be postponed until Saturday because the Emergency Room got backed up with some pretty serious stuff.
It is also unfortunate that more of her hair is starting to fall out - and just after Gyongyi had done such a great job of styling it. She is still looking great, though - not that much has come out - and she has a wig prepared if more comes. But since there is only one more radiation treatment to go, she might still not lose it all.
Mum was delighted to see pictures of her friends at art events and giving toasts, and the guest book from the last exhibition was photocopied and hand delivered today, so she got to feel a bit more participative.
One of her doctors is a lovely aging gentleman who said to Dad yesterday, 'Where are you from, young man?" (they're about the same age)... turns out the doc is from Hebden Bridge, not far from where Dad grew up and where his cousin's daughter lives! Today when the doctor visited he stuck around for about 20 minutes and the two of them were swapping stories and dropping place names - definitely perked Dad up, and all of us, in fact. The staff have really been extraordinarily attentive and kind, but to find someone cut from the same cloth was an extra treat.
I will really have to start writing down some of the hilarious lines Mum is coming out with, because some of them really have been classics. Her sense of humour is there and comes out sometimes when we least expect it.
We brought in some more artwork and by Saturday she should hopefully have the pieces she wants in Feng Shui-friendly placement. Vicky will have to oversee that as I've had to come back to Vancouver because of some work commitments.
Gyongyi has been so touched and appreciative of the strong friendships Mum has been able to count on. "We should all be so lucky to have such great friends!" The cards, the calls, and the consideration shown by so many really has been extraordinary... thank you all for being there for her and for all of us.
She was in good spirits when she was wheeled back into her room - they have some interesting contraption set up from the ceiling that she holds onto to get into bed. Looks like a trapeze kind of thing, so we wonder if she'll be applying to Cirque du Soleil.
The throat is still really bad and she didn't get much more down today - it is incredible to think that she hasn't had anything substantial to eat for probably ten days now. Unfortunately, the procedure to install the tube had to be postponed until Saturday because the Emergency Room got backed up with some pretty serious stuff.
It is also unfortunate that more of her hair is starting to fall out - and just after Gyongyi had done such a great job of styling it. She is still looking great, though - not that much has come out - and she has a wig prepared if more comes. But since there is only one more radiation treatment to go, she might still not lose it all.
Mum was delighted to see pictures of her friends at art events and giving toasts, and the guest book from the last exhibition was photocopied and hand delivered today, so she got to feel a bit more participative.
One of her doctors is a lovely aging gentleman who said to Dad yesterday, 'Where are you from, young man?" (they're about the same age)... turns out the doc is from Hebden Bridge, not far from where Dad grew up and where his cousin's daughter lives! Today when the doctor visited he stuck around for about 20 minutes and the two of them were swapping stories and dropping place names - definitely perked Dad up, and all of us, in fact. The staff have really been extraordinarily attentive and kind, but to find someone cut from the same cloth was an extra treat.
I will really have to start writing down some of the hilarious lines Mum is coming out with, because some of them really have been classics. Her sense of humour is there and comes out sometimes when we least expect it.
We brought in some more artwork and by Saturday she should hopefully have the pieces she wants in Feng Shui-friendly placement. Vicky will have to oversee that as I've had to come back to Vancouver because of some work commitments.
Gyongyi has been so touched and appreciative of the strong friendships Mum has been able to count on. "We should all be so lucky to have such great friends!" The cards, the calls, and the consideration shown by so many really has been extraordinary... thank you all for being there for her and for all of us.
Toast to Marika
Some great pictures of Mum's friends toasting her at a recent art event
And Mum's two-part painting at that event
And Mum's two-part painting at that event
Thursday, September 11, 2008
Culinary Conundrum
We paid an evening visit to Mum and she had only been able to eat a bit. No wonder - the food they are bringing her is absolute rubbish. There was a strawberry mousse and a tomato-cream soup. Considering she isn't great with lactose and she has heaps of sores in her mouth, I don't know how they are thinking she will be able to eat this. And the answer is - they aren't thinking. The system is in place and unless conscious attention is drawn to it, diet is not considered.
We spoke with the staff and they were 100% in agreement that what she was brought was inconsistent with what she needs and they made a note to have a dietician visit on Friday so we can work at getting her things she can absorb that will be helpful. The staff are absolutely amazing - when they say they will check back in ten minutes, they are back in ten minutes; they are very considerate and helpful. There are angels working in this field, for sure.
But this demonstrates the fact that the squeeky wheel gets the grease. What about those who don't have family members or friends to complain on their behalf, or those who don't think to question things that the establishment should be aware of. The disconnect within the system is sad to witness and experience, especially when lives are at stake.
I've brought Mum some Aloe Juice with various supplements to help heal her internally and it was going down with ease. I'll be on the lookout for some healthy high-protein supplements in the hopes of getting her better nourished.
We spoke with the staff and they were 100% in agreement that what she was brought was inconsistent with what she needs and they made a note to have a dietician visit on Friday so we can work at getting her things she can absorb that will be helpful. The staff are absolutely amazing - when they say they will check back in ten minutes, they are back in ten minutes; they are very considerate and helpful. There are angels working in this field, for sure.
But this demonstrates the fact that the squeeky wheel gets the grease. What about those who don't have family members or friends to complain on their behalf, or those who don't think to question things that the establishment should be aware of. The disconnect within the system is sad to witness and experience, especially when lives are at stake.
I've brought Mum some Aloe Juice with various supplements to help heal her internally and it was going down with ease. I'll be on the lookout for some healthy high-protein supplements in the hopes of getting her better nourished.
Thursday September 11
Vicky and I arrived today shortly after Robi left. Mum is able to sit upright and was looking very with it. She'd done her eyebrows and put on her lipstick, and Gyongyi cut her hair, so she was definitely styling.
Unfortunately she isn't able to get much food down. She did manage to finish a whole serving of Jello with some ice-cream, which is a big step, but she needs much more nutrition to get her body's strength up and to help her heal from the chemo. The sores in her mouth are still quite intense - I was really surprised to see how much is still there and can't imagine how much pain she must have been in earlier if that is what is still there. She's a tough cookie!
The new room will require some shifts in artwork to get the energy flowing better - I refuse to let Feng Shui considerations be overlooked! There is a huge TV opposite her that she was not thrilled about, although with an attached DVD player she now has the chance to watch some movies. That area is surrounded by many cards and photos that have been sent by friends and relatives. We will go through her artwork tonight and take some more when we have an evening visit after dinner.
A half-dozen cards arrived in the mail today, so she will be thrilled to have those too (we will take them to her so that she can enjoy them when she has more focus and energy).
We're hoping she continues to gain her strength and ability to eat - there is certainly no lack of desire on her part! As long as her body can cooperate...
Unfortunately she isn't able to get much food down. She did manage to finish a whole serving of Jello with some ice-cream, which is a big step, but she needs much more nutrition to get her body's strength up and to help her heal from the chemo. The sores in her mouth are still quite intense - I was really surprised to see how much is still there and can't imagine how much pain she must have been in earlier if that is what is still there. She's a tough cookie!
The new room will require some shifts in artwork to get the energy flowing better - I refuse to let Feng Shui considerations be overlooked! There is a huge TV opposite her that she was not thrilled about, although with an attached DVD player she now has the chance to watch some movies. That area is surrounded by many cards and photos that have been sent by friends and relatives. We will go through her artwork tonight and take some more when we have an evening visit after dinner.
A half-dozen cards arrived in the mail today, so she will be thrilled to have those too (we will take them to her so that she can enjoy them when she has more focus and energy).
We're hoping she continues to gain her strength and ability to eat - there is certainly no lack of desire on her part! As long as her body can cooperate...
Wednesday, September 10, 2008
Movin' on up
Mum got moved into a room upstairs in the hospital today - don't have all the details yet but apparently the room is not yet done up to her specifications...her Feng Shui Consultant son needs to get in and work his magic, which will happen on Thursday.
Her voice was stronger again today and her cousin Robi arrived from Toronto - so there were three Hungarians in the room! If anything would get her voice working again, it would be that!
There was good news that the chemo session, for all the harm that it did, actually might have improved some of the liver functions for now, according to recent blood tests. That said, she will not have another such treatment as it would quite literally kill her - this last time was close enough (her reaction really was very, very bad). She had her second radiation treatment today to help hold back the impact of the cancerous cerebro-spinal fluid - three more of those to go.
A friend of mine was saying today that her mother had the same thing in her spinal fluid and that it didn't impact her the way the doctors had expected. It is always difficult to know how much of a doctor's expert opinion to take seriously because each person and their healing process is so different, so their diagnosis can often be nothing more than an educated guess - and guesses can be wrong. Here is hoping that she continues to defy the odds.
Her voice was stronger again today and her cousin Robi arrived from Toronto - so there were three Hungarians in the room! If anything would get her voice working again, it would be that!
There was good news that the chemo session, for all the harm that it did, actually might have improved some of the liver functions for now, according to recent blood tests. That said, she will not have another such treatment as it would quite literally kill her - this last time was close enough (her reaction really was very, very bad). She had her second radiation treatment today to help hold back the impact of the cancerous cerebro-spinal fluid - three more of those to go.
A friend of mine was saying today that her mother had the same thing in her spinal fluid and that it didn't impact her the way the doctors had expected. It is always difficult to know how much of a doctor's expert opinion to take seriously because each person and their healing process is so different, so their diagnosis can often be nothing more than an educated guess - and guesses can be wrong. Here is hoping that she continues to defy the odds.
Professor Emerita: The Stander
On the stage
Dr. Jacqueline Holler presents her
to the audience
saying the name
Gosztonyi
with Hungarian emphasis
carefully cradling the word that speaks
Marika's family history
a melody of syllables and sounds
fall into one another the way a mountain stream makes music on stones
she talks about Marika's worldwide reputation as a
renowned scholar of Science
reads a list of her publications,
appointments, accomplishments
the list is long
Marika Gosztonyi Ainley stands beside the podium
a woman with red hair in a red dress
before an audience of
seven hundred graduating students
more than a thousand parents, grandparents, siblings, children, friends
fifty distinguished guests
one hundred members of the faculty and
a spectacular array of honourees and dignitaries
she stands there
head high
beautifully composed, quiet
she doesn't flinch, nor smile, she simply stands
radiating certainty
listening
confident in the deep value of a life of dedicated work
calmly receptive to the honours bestowed upon her
(c) Jacqueline Baldwin, 05:27:05
Dr. Jacqueline Holler presents her
to the audience
saying the name
Gosztonyi
with Hungarian emphasis
carefully cradling the word that speaks
Marika's family history
a melody of syllables and sounds
fall into one another the way a mountain stream makes music on stones
she talks about Marika's worldwide reputation as a
renowned scholar of Science
reads a list of her publications,
appointments, accomplishments
the list is long
Marika Gosztonyi Ainley stands beside the podium
a woman with red hair in a red dress
before an audience of
seven hundred graduating students
more than a thousand parents, grandparents, siblings, children, friends
fifty distinguished guests
one hundred members of the faculty and
a spectacular array of honourees and dignitaries
she stands there
head high
beautifully composed, quiet
she doesn't flinch, nor smile, she simply stands
radiating certainty
listening
confident in the deep value of a life of dedicated work
calmly receptive to the honours bestowed upon her
(c) Jacqueline Baldwin, 05:27:05
Tuesday, September 9, 2008
Another post about posting
Some of the procedures for posting notes have become a bit clearer to me as time goes on here.
If you are reading the blog as one long page - that is, not clicking on the individual titles in the menu on the right - then you must click the Comments word underneath the posting. There might be a number which may or may not be grammatically correct, like '1 comments' - click there, not the envelope next to that word.
If you are clicking on each individual title, the comments will automatically show underneath the update. Underneath the final comment, it says 'Post a comment' - click that.
In both cases, another page will open up showing the comments on the left and a space to 'Leave your comment' on the upper right. Once you have typed your message in that box, scroll to the lower right of the page. It is easiest to choose one of the two lower choices: Name/URL or Anonymous. Click whichever you prefer; if Name, please enter your FIRST AND LAST names (no URL or web address necessary - it's optional), and if Anonymous please be certain to sign your full name at the end of your typed comment so Mum will know who your message is from...she knows many people with the same name, and initials won't be much help.
I hope this helps, and thanks again for showing your deep friendship and affection for Mum with your kind words.
If you are reading the blog as one long page - that is, not clicking on the individual titles in the menu on the right - then you must click the Comments word underneath the posting. There might be a number which may or may not be grammatically correct, like '1 comments' - click there, not the envelope next to that word.
If you are clicking on each individual title, the comments will automatically show underneath the update. Underneath the final comment, it says 'Post a comment' - click that.
In both cases, another page will open up showing the comments on the left and a space to 'Leave your comment' on the upper right. Once you have typed your message in that box, scroll to the lower right of the page. It is easiest to choose one of the two lower choices: Name/URL or Anonymous. Click whichever you prefer; if Name, please enter your FIRST AND LAST names (no URL or web address necessary - it's optional), and if Anonymous please be certain to sign your full name at the end of your typed comment so Mum will know who your message is from...she knows many people with the same name, and initials won't be much help.
I hope this helps, and thanks again for showing your deep friendship and affection for Mum with your kind words.
Tuesday September 9
Mum's voice is doing much better today - there was the strength that we had heard earlier in the week before the soreness came back with a vengeance. She has a new slurpy toy, the kind of suction thing that dentists use to pull out your saliva, so that is helping her remove some of the buildup without taxing her throat so much. As a result, she is speaking more clearly - and putting her voice to good use, as Dad wryly noted. Gyongyi is still there and taking wonderful care of her, and her cousin Robby will be visiting from Toronto on Wednesday.
She did have her first radiation treatment this morning - the doctors are quite certain this will help improve her quality of life by holding back the impact of the malignancy in her spinal fluid. No side effects yet, and they are certainly not expected to be anywhere as strong as those of the chemo she underwent over 10 days ago that she is still recovering from.
It is challenging for Vicky and me to be so far away for a couple of days - we had always stated that Victoria was close enough but far enough, but at the moment it's too far. We are looking forward to being able to visit on Thursday. We did read her the newer blog comments over the phone since Dad's technophobia might supersede that of some of the supposedly technologically challenged folks on this site, and she was very happy to hear them.
She did have her first radiation treatment this morning - the doctors are quite certain this will help improve her quality of life by holding back the impact of the malignancy in her spinal fluid. No side effects yet, and they are certainly not expected to be anywhere as strong as those of the chemo she underwent over 10 days ago that she is still recovering from.
It is challenging for Vicky and me to be so far away for a couple of days - we had always stated that Victoria was close enough but far enough, but at the moment it's too far. We are looking forward to being able to visit on Thursday. We did read her the newer blog comments over the phone since Dad's technophobia might supersede that of some of the supposedly technologically challenged folks on this site, and she was very happy to hear them.
Monday, September 8, 2008
Monday September 8
It was a busy day today - lots of visiting on different shifts as Marika's sister Gyongyi (say that ten times fast) arrived from Montreal. Mum continued to have a bad throat and is having trouble keeping things down. The very kind lady next door continued her words of support, stating that she was the same way a week ago and giving advice how to swallow Jello more painlessly (if such a thing could be possible - they do overdo it in hospitals, no?).
Gyongyi has years of experience in hospitals and set about getting the room wonderfully organized and cleaned. She was showering totally loving care on her sister and it was much appreciated. Lots of Hungarian flowing in the room, too, a nice nostalgic sound for Vicky and me (and maybe for Dad, though the verdict is still out on that one). Mum got more of the spa treatment - nails, eyelashes, and eyebrows. Lips, alas, have to wait until some of the swelling from the treatment goes down.
Mum will be starting a five-treatment series of radiation on Tuesday morning. This will be to focus on lessening the effects of the cells in the cerebro-spinal fluid, hopefully preventing them from latching on to parts of the brain and inhibiting whatever related functions are associated with that area. Fortunately the side effects from the radiation are far more minimal than those from the chemo - the nausea should be well controlled by some medication they will give her, and the tiredness that often goes with this is already present and will likely not be exacerbated. We're all hoping Mum will be back to her lively self once this throat challenge is overcome.
Good news is that her white blood cell count is much higher and that is helping her to heal more quickly. The MRSA is still present but we are waiting for tests that could mean that visitors don't need to wear masks - they will still need to suit up in the super-stylish yellow disposable gowns that we've been sporting.
Mum continues to be thrilled by your comments, and her room is starting to fill up with drawings from kids and cards from friends.
Gyongyi has years of experience in hospitals and set about getting the room wonderfully organized and cleaned. She was showering totally loving care on her sister and it was much appreciated. Lots of Hungarian flowing in the room, too, a nice nostalgic sound for Vicky and me (and maybe for Dad, though the verdict is still out on that one). Mum got more of the spa treatment - nails, eyelashes, and eyebrows. Lips, alas, have to wait until some of the swelling from the treatment goes down.
Mum will be starting a five-treatment series of radiation on Tuesday morning. This will be to focus on lessening the effects of the cells in the cerebro-spinal fluid, hopefully preventing them from latching on to parts of the brain and inhibiting whatever related functions are associated with that area. Fortunately the side effects from the radiation are far more minimal than those from the chemo - the nausea should be well controlled by some medication they will give her, and the tiredness that often goes with this is already present and will likely not be exacerbated. We're all hoping Mum will be back to her lively self once this throat challenge is overcome.
Good news is that her white blood cell count is much higher and that is helping her to heal more quickly. The MRSA is still present but we are waiting for tests that could mean that visitors don't need to wear masks - they will still need to suit up in the super-stylish yellow disposable gowns that we've been sporting.
Mum continues to be thrilled by your comments, and her room is starting to fill up with drawings from kids and cards from friends.
Sunday, September 7, 2008
Sunday Evening
Mum's throat continued to hurt today. This afternoon we had a lovely visit in shifts, though. She got the television in her room activated, now that she has enough energy and waking hours to pay attention to it, so we made a date to go back to watch one of her favourite programs together at 9pm, a British police show called New Tricks.
She was not fully able to stay awake throughout the program, but enjoyed having it on in the background and we taped it at home for future reference. Unfortunately her throat is still giving her big problems - it seems that the skin inside is regenerating and so there is a lot of irritation. She has been given more medicine to help accellerate the process while also soothing the area.
This afternoon, just before I went in, the lady in the next room called me in and asked about what treatment Mum had had. She said that she recognized the kind of cough as what she herself had gone through after some chemo and stated that the 10-day mark where Mum is made sense - and this lady was sounding much stronger and clearer. "Everything that you're hearing is from the chemo," she said, "and she'll get through that." It was very encouraging. She also piped up in support when the nurse was at the door sarcastically announcing the arrival of more Jello, which Mum hasn't been wanting to eat. "It goes down easy on the throat," called out the neighbour. Nice to know she has someone next door looking out for her!!
Mum is still loving all your comments and is buoyed by your thoughts and wishes, as are we all.
She was not fully able to stay awake throughout the program, but enjoyed having it on in the background and we taped it at home for future reference. Unfortunately her throat is still giving her big problems - it seems that the skin inside is regenerating and so there is a lot of irritation. She has been given more medicine to help accellerate the process while also soothing the area.
This afternoon, just before I went in, the lady in the next room called me in and asked about what treatment Mum had had. She said that she recognized the kind of cough as what she herself had gone through after some chemo and stated that the 10-day mark where Mum is made sense - and this lady was sounding much stronger and clearer. "Everything that you're hearing is from the chemo," she said, "and she'll get through that." It was very encouraging. She also piped up in support when the nurse was at the door sarcastically announcing the arrival of more Jello, which Mum hasn't been wanting to eat. "It goes down easy on the throat," called out the neighbour. Nice to know she has someone next door looking out for her!!
Mum is still loving all your comments and is buoyed by your thoughts and wishes, as are we all.
Slower Sunday
Mum was a bit slower today - her throat was hurting her a bit more. We're not sure if it was the Scotch, coffee, or conversation that did it. She was still perking up at times, and Vicky once again put some make-up on her. She was excited to hear we had been to the exhibit yesterday, and that we had dropped off another painting for another exhibit.
She has made a couple of phone calls from her cell phone there, mostly to her sister and some overseas relatives. We also called the birdline and she was tempted to report that there was a baked turkey at the hospital. Her sense of humour is very keen these days, and she is appreciating everyone's comments and thoughts - we are sharing them each visit.
On lunch break now and returning shortly...
She has made a couple of phone calls from her cell phone there, mostly to her sister and some overseas relatives. We also called the birdline and she was tempted to report that there was a baked turkey at the hospital. Her sense of humour is very keen these days, and she is appreciating everyone's comments and thoughts - we are sharing them each visit.
On lunch break now and returning shortly...
Saturday, September 6, 2008
What an improvement!
Your stated wishes, and ours, have been coming true. Mum showed huge signs of improvement when we saw her today. First off, she was wearing her glasses, despite being on her side in bed. She had her voice almost fully back, so she wasn't just whispering - what a relief to be able to communicate more clearly and to hear her character coming through more strongly!
And she certainly did come through loud and clear. She had a few words about her evening nurse ('Why do they always come disturb you just after you've fallen asleep?') [though all the other nurses we've met have been great] and had us draw up a huge list of things to bring in (including make-up and her sketch-book) and errands to run. The coffee no doubt perked her up (we gave it to her on ice), and she had a few more requests for edible items. Her digestive tract is still messed up inside, but her mouth is healing very well and so we hope she'll be able to start taking more food and drink before long. She's still wanting the scotch she asked for yesterday, but since it is quite harsh we may just give her a homeopathic dose diluted in water.
She was happy to see pictures of the art exhibit that she has some paintings in, and to get some cards. Please feel free to send cards and we'll take them in. We're going to do up the room while she's there - we asked about hammering in a few nails and putting more pictures on the walls. The cards will make a lovely addition too. She was also delighted to read the comments you wrote (and she was able to read them, rather than having me read them to her).
The address to send to is
Marika Ainley
304-1106 Glenora Place
Victoria, BC
V8P 2C3
We're on a lunch break before going back for another visit. Will update again later. Marilyn's soup and Mario's gelato are on her menu for this afternoon...
And she certainly did come through loud and clear. She had a few words about her evening nurse ('Why do they always come disturb you just after you've fallen asleep?') [though all the other nurses we've met have been great] and had us draw up a huge list of things to bring in (including make-up and her sketch-book) and errands to run. The coffee no doubt perked her up (we gave it to her on ice), and she had a few more requests for edible items. Her digestive tract is still messed up inside, but her mouth is healing very well and so we hope she'll be able to start taking more food and drink before long. She's still wanting the scotch she asked for yesterday, but since it is quite harsh we may just give her a homeopathic dose diluted in water.
She was happy to see pictures of the art exhibit that she has some paintings in, and to get some cards. Please feel free to send cards and we'll take them in. We're going to do up the room while she's there - we asked about hammering in a few nails and putting more pictures on the walls. The cards will make a lovely addition too. She was also delighted to read the comments you wrote (and she was able to read them, rather than having me read them to her).
The address to send to is
Marika Ainley
304-1106 Glenora Place
Victoria, BC
V8P 2C3
We're on a lunch break before going back for another visit. Will update again later. Marilyn's soup and Mario's gelato are on her menu for this afternoon...
Saturday morning
We phoned the hospital to check in, and apparently Mum requested a strong, black coffee. Yesterday we had joked about bringing in a scotch. (The nurse winked and told us to go ahead; unfortunately, Mum's mouth and throat haven't healed enough for that to be a good idea.) Yesterday she had a taste of some chocolate ice cream that she requested. Unfortunately she still isn't able to take much orally.
One espresso coming up, though...
One espresso coming up, though...
Friday, September 5, 2008
How To Post Comments
Happy to say that I seem to have sorted out the bug that was preventing people from posting comments without registering - sorry for the confusion. You should be able to click the Comments button that has a number in front of it, and then enter a name or remain anonymous when posting a comment - without registering for a google email account (as cool as their system is).
Thanks for reading and participating - the comments do mean a lot to all of us.
Thanks for reading and participating - the comments do mean a lot to all of us.
TGIF
We had a great visit with Mum this afternoon. She had been a little groggy in the morning again, but still affectionate and occasionally communicative. This afternoon she was livelier and more responsive - please keep in mind that this is all relative, in the context of being really quite drugged out and exhausted. But it was so lovely to see her smiling, and she was reaching for us lots, so we had some great hugs and kisses. Unfortunately kisses have to be behind the masks and gloves that we have to wear because she still has an MRSA (medication-resistant infection).
Her day nurse was wonderful today - very lively and caring. She encouraged us to continue doing up the room as much as we wanted - this after we took down the one tiny painting opposite Mum's bed and replaced it with one of Mum's own giant paintings. We also had a small CD player with mini-speakers in the background that were playing some classical music in the background (she requested some jazz for tomorrow).
We have been doing two visits a day because she has been so tired and even more so after our visits, but she was more energized today so we will have another visit after she rests while we have our dinner.
I have been sharing your messages and she appreciates them so much - please keep them coming, and thanks for being in touch.
Her day nurse was wonderful today - very lively and caring. She encouraged us to continue doing up the room as much as we wanted - this after we took down the one tiny painting opposite Mum's bed and replaced it with one of Mum's own giant paintings. We also had a small CD player with mini-speakers in the background that were playing some classical music in the background (she requested some jazz for tomorrow).
We have been doing two visits a day because she has been so tired and even more so after our visits, but she was more energized today so we will have another visit after she rests while we have our dinner.
I have been sharing your messages and she appreciates them so much - please keep them coming, and thanks for being in touch.
One month ago...
This photo of Marika and David was taken on their Alaska cruise one month ago today.
We are so glad that they were able to go on this trip and have such a great time.
Thursday, September 4, 2008
Evening update - September 4
The first post was written before we saw Marika on Thursday morning. She was still in Emergency - a really dark room in isolation, no windows...not good for our outdoors-loving birder. (That said, the staff were amazing.) She was not very responsive this morning, being quite drugged out. The nurse did say that she had made excellent improvement on the thrush (not the bird variety) that had been plaguing her mouth and throat.
Vicky arrived midday and when we went to the hospital, Mum had been moved to the Cancer Hospice. She has her own room, and it has a window from which you can see trees and sky. She lit up when Vicky walked in, and was able to communicate despite her overall grogginess. She asked about world events and what was going on in our lives. "I'm in a right pickle," she stated - clearly her sense of humour is still working despite all the medication. Vicky virtually gave her a spa treatment, spraying her face with a water-spray bottle the nurses had given us, applying lotion to her back, hands, and feet...she could have been a Florence Nightingale if she hadn't gone into the wine business. It didn't take long for mum to get quite tired, though, but she was fortunately more lucid than in the past couple of days.
When face-to-face with someone in this state, it is hard to imagine someone getting better, but this is apparently what the old days of chemo were like, and that's where this treatment took her. Unfortunately, the overall prognosis is still not good - the cancer has spread, though right now the main challenge seems to be the tough physical state she's in from the treatment one week ago.
Feel free to leave us messages on this page by clicking the 'comments' button below this posting, not the email button. Emails sent to Marika might occasionally be checked but this is the best way to reach us all. We very much appreciate your concern and best wishes.
Vicky arrived midday and when we went to the hospital, Mum had been moved to the Cancer Hospice. She has her own room, and it has a window from which you can see trees and sky. She lit up when Vicky walked in, and was able to communicate despite her overall grogginess. She asked about world events and what was going on in our lives. "I'm in a right pickle," she stated - clearly her sense of humour is still working despite all the medication. Vicky virtually gave her a spa treatment, spraying her face with a water-spray bottle the nurses had given us, applying lotion to her back, hands, and feet...she could have been a Florence Nightingale if she hadn't gone into the wine business. It didn't take long for mum to get quite tired, though, but she was fortunately more lucid than in the past couple of days.
When face-to-face with someone in this state, it is hard to imagine someone getting better, but this is apparently what the old days of chemo were like, and that's where this treatment took her. Unfortunately, the overall prognosis is still not good - the cancer has spread, though right now the main challenge seems to be the tough physical state she's in from the treatment one week ago.
Feel free to leave us messages on this page by clicking the 'comments' button below this posting, not the email button. Emails sent to Marika might occasionally be checked but this is the best way to reach us all. We very much appreciate your concern and best wishes.
Marika's Process - September 4, 2008
We are starting this blog as a way for Marika's many friends to be in touch and updated as she goes through her healing process. Because of her vast social network, it will simply not be possible for her family to field all the caring phone calls and repeat the same updates; hopefully this blog can provide a way for her community to feel in the loop and updated.
The past week has been very tough as she has gone through a strong reaction to a new chemo, as well as to the pain-control medication. She is currently in hospital in isolation to build up her immunity system, and is only taking family visitors. Though she is heavily medicated, she is still aware and able to communicate bits of information - she asked for a library book to be returned and her email checked, and to have her hair brushed.
Her main oncologist is excellent, as are the nurses at Emergency, so she is in good hands. David is of course very upset and concerned, and Mark is presently in Victoria as well, and Vicky will be arriving today.
We appreciate your thoughts and wishes - feel free to share them here and we will communicate your hellos to Marika.
The past week has been very tough as she has gone through a strong reaction to a new chemo, as well as to the pain-control medication. She is currently in hospital in isolation to build up her immunity system, and is only taking family visitors. Though she is heavily medicated, she is still aware and able to communicate bits of information - she asked for a library book to be returned and her email checked, and to have her hair brushed.
Her main oncologist is excellent, as are the nurses at Emergency, so she is in good hands. David is of course very upset and concerned, and Mark is presently in Victoria as well, and Vicky will be arriving today.
We appreciate your thoughts and wishes - feel free to share them here and we will communicate your hellos to Marika.
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