She's gone

For anyone reading this blog who has not read updates on our canberracollins blogspot, our dearest Mum has died. She went to be with the Lord on Tuesday 8th of April, 2008 - exactly 10 months after Dad.

The last months were up and down with new health problems and interventions to correct them, with some success. Overall, Mum’s respiratory function (cancer in both lungs and liver) continued to decline. In the last weeks, a huge clot developed on the right, somewhere in the vein below her heart and continued down her leg, cutting off the blood flow. The last two weeks she endured advancing tissue death (gangrene) and yet she was still so focussed on the people around her.

Mum had been ‘ready’ for at least 6 weeks, living each day so fully and with such peace. She had dealt with all her issues and was ‘free’. She stayed in that lovely way, despite her physical condition creating hell for her body. How she could be so interested in other people I don’t know, but she chose to be switched on, remain herself and somehow bear the impossible.

The medication in the last 2 weeks relieved her feeling of being short of breath, so she became insensitive to increasing respiratory difficulty. She was so glad that her breathing distress had gone, because the thought of ‘smothering’ as her lungs got worse was frightening. So the deterioration in lung function was fairly well tolerated.

She was prescribed increasing pain relief, but was reluctant to be ‘bombed out’ or become reduced in her thoughts or ability to communicate. So, she was fully still on the ball, (bit slurry speech) loving and gracious, when she finally went to sleep on the Monday night and then gently slipped away from us on Tuesday morning around 1045am. At home, surrounded by her family.

Her funeral was held on Monday 14th April, and I have put most of the messages up on our blogsite. Thank you for checking in here, Mum surely sent her love to everyone.

I think I will not use this blog anymore, so please look us up by clicking on the top link and saving it to your favourites.
Click here http://www.canberracollins.blogspot.com/

Updates on Collins blog

New entries continue - Please check my blog for updates on Mum
I am not able to both at present.

Please use link at top of page to Canberra Collins
www.canberracollins.blogspot.com

See you there....

Happy Birthday

Mum had a very full and happy birthday.

We had an appt with the specialist and he has ordered fro tomorrow more bloods and Xrays. Wondering if her poor kidneys are contributing to her weakness. Her scan a month ago indicated increase in size and number of lung lesions and a 'shadow' in the liver, most likely new spread (we were focussed on the blocked vessel at time).

Mum is losing breath and strength progressively and can now just potter around the house. Stairs are big trouble and getting going (shower, in/out bed or walk to car) causes her to puff and pant. She has trouble eating much more than a tiny serving at any meal, and can't drink fluids at the same time but waits until her fullness eases a little.

She had a nasty episode of 'visual disturbance' 10 days ago, and still don't know what that was. She is off the Dexa, and the top half swelling has gone down, thanks to unblocking the venacava vein. Now, though, it is possible to see the profile of lumps around her shoulders and neck (prob lymph nodes being reactive or affected by spread) She works hard at the breathing and is sore in the muscles. Just as the oedema in her head/shoulders was diminishing, her legs and lower abdo have been swelling for the first time, despite the pressure stockings.

How wonderful the discovery of letters under the house, mostly between Dad and Mum in the 1940's & 50's, but many others too. She was too unwell prior to the stent procedure to look at them but is now working through some with great joy and delight (there are 100s of letters up to 10+ pages). It gets better, on the trip out to her brother's farm (old family property in Golspie) last week, we discovered many more letters, and documents going back as far as 1916 WW1 and some between her parents. She is savouring and enjoying them. Need more time to continue her own recordings as well.

She had a precious afternoon with her long-term group (book study, friendship) and they treated her to a memorable ceremonial washing, annointing and communion - beautiful!

She squeezed in another trip yesterday to Goulburn to spend part of the day with 2 sisters and share together. She is encouraging them (you too) to record their life story - written or audio recording. She has had much satisfaction going through past memories and she is free of all the old baggage, wishing everybody would just open the doors to clean out their cupboards, so to speak.

Well, as Mum says every night,

"See you in the morning!" and hums a bar of "Morning has broken"

Love Beth

PS Thank you all for caring about Mum and us, practical help and staying in touch, etc..

Contact

Dear folks,
Thank you for all messages and kind thoughts. Isn't it wonderful to be able to catch up like this at any time of the day? It may not be personal daily communication, but at least this way you know something, because I truly could not keep up with all the contacts and the phone would be constantly off the hook.

Mum has spent time reading another blog (printed out) by a young fellow who is sharing his situation on a website (much prettier and more professional than ours, Hi Cam!) Anyway, she loves his style, guts and honesty and really relates to his latest blurb. Hope I can put this in, OK Cam?
http://www.thewalkbeside.com/2008/02/29/on-being-positive-hopeful-and-realistic/
or home www.thewalkbeside.com

Well, kind regards, sincerely, faithfully, warmest thoughts, fondly yours, yours truly, deeply, madly... (whatever signoff would be for you) ;~)
Love from Beth for Joan, Chris and families

29 Feb 08 - Waking up tomorrow

29 Feb 08
Well, despite the technical success of the procedure on Monday, Mum is still becoming increasingly weak and breathless. The doctors were delighted with having discovered the blocked vessel and corrected it, but we all realise that the masses have increased in number and size, and must be more responsible for her current condition. No doubt, this procedure was beneficial anyway.

We had hoped that relieving the venous congestion to her upper body would alleviate the limited breathing and heart strain. (She had a 2nd episode of chest pain on Wed PM) The visible swelling to her face, head, neck and shoulders has reduced and we assume that internal oedema is resolving too, so it is a real disappointment to accept that it might not be enough to improve her significantly (however temporary).

Mum was pleased with the specialist who was honest enough to say that quality is her main priority, not quantity. She would much rather a straight understanding.

We wanted this to be a quiet week of rest and recovery but it has been instead, full of activity and stimulation. The loo needed fixing 3 times (new seals and mechanism), shed fridges had to be emptied and swapped, the garage door broke (at ballistic speed), the microwave went bang (using Chrissy’s spare now), tradesmen bashed around doing some work booked in weeks ago, kids coming and going, Doctor visits, blood tests and urgent business taken care of.

Poor Chris has been on and off at work, very difficult trying to do everything she usually has to do and big medical stuff and be with Mum at home and for appointments. She did get some good news herself - saw the specialist who said her bone strength was now up in good range (first time in years) and her back fracture is slowly healing. The 6-month scan shows the beginning of healing from the outside edges toward the centre (like a cake cooking). The 2nd horse might have to come back, which is another real worry, expense and stress for her. Her cute puppy (unnamed) is a source of great delight and bother.

Tom has had some days off to be around for the children and many jobs we have needed help with. Couldn’t have got through without him. Steve was away at school camp Sunday-Wednesday and Leah is off next week Wed-Friday. Homework routine is shot as they have limited time, support or opportunity to get anything done at home where they can access the things they need, oh well. Somehow the pets are surviving. The chook lays her eggs in the rabbit burrow and the dog keeps them safe in his kennel till we remember to collect them. The budgies are all in the outside cage and our fish numbers are about 2, last check. One inside, one outside in the pond with the frog. Gilly dog is a patient old gentleman with the puppy when we puppysit her.

Through recent weeks and days, Mum has had much to say that is inspirational, encouraging and beautiful. She feels such love and is praising the Lord so often for the blessings in her life as she looks back over the years, as well as right now. She feels all her issues are dealt with and has no regrets, wouldn’t change even the bad stuff, because it created the person she is today. She reckons she’s the most loved and blessed lady in the world. She approaches each day with a bright attitude and feels fulfilled and at peace when she settles at night. She said she is content and will wake up tomorrow, either in her bed or in heaven.

Thank you for your loving thoughts and care; for not visiting when you’d like to and for coming when it was right anyway. For messages and calls (sorry, Mum has not been keen to talk on the phone this week).

Must sign off. Love to all and God bless you, ‘cos He’s sure blessed us!
Beth for Joan, Chris and families

27 Feb 08 - Slow going

Mum's still working very hard, puffing and gasping. We hoped her breathing would have improved but it's a struggle. I wonder if the lungs and heart are overloaded temporarily due to increased flow from above. We are hopeful soon the balance will equalise and there will be haemodynamic stability (gotta use a medical description here to save lots of waffle).

Thank you for loving thoughts, flowers and messages.

25 Feb 08 - Stricture opened

25Feb08

Dear All,

Mum sends her love and thanks for all your prayers and concern.

So far, so good!! Monday morning went well with the venagram (via the right groin) up into the Superior Vena Cava and found a tight restriction of blood flow. 95-99% obstructed. They were able to balloon stretch it out (unpleasant) to a degree but was very tight, possibly old scar tissue causing the stricture. So a stent was successfully introduced which has opened the vessel to more like 70%. Thank the Lord!! and clever doctors...

We were delayed leaving hospital this evening because of persistent bleeding at the site (due to warfarin) and Mum's BP was way up. But the signs are good and we are excited anticipating new opportunities with the free flow and improved circulation. It might take a little while for the oedema to settle. She's worn out and quiet, but happy!

We are so grateful for the wonderful way God made our bodies, especially when they work the way they were meant to.

Warmest regards,

Beth for Joan, Chris and our families

Heartache

Friday 22 Feb 08

Mum said she had a quiet and pleasant day pottering about, but had an episode of severe prolonged chest pain around midday. When I came in later in the afternoon and she told me, we went to see the Dr. and he believes it is cardiac pain. This is something new for Mum, but she has had a few brief twinges in recent days. She feels very calm and peaceful and obviously thinks that her heart may not carry her through a prolonged illness. She has been given a nitro medication to use if any further pain episodes come, but they will only help angina (by opening up the arterial blood flow), not prevent a dangerous arrhythmia.

We are in big trouble if Monday’s procedure does not result in a stent to relieve the pressure – this is still just a theory, because the CT did not demonstrate obstruction but all the clinical signs are there.

She is full of love and inspiration and feels a deep inner peace. She desires complete authenticity, as she too, is able to share her thoughts and feelings with honesty and grace. She sends her love to you all.

With love and blessings,

Beth for Joan and us all

Please keep and eye on my blog each time you check Mum's because I sometimes only update ours. Click on link at top of page.

or just click it here: http://www.canberracollins.blogspot.com/

Our Mum Joan - Feb 08

Thursday 21 Feb, 2008
Mum is struggling more recently with serious breathlessness and dizziness. Her face is puffy (especially her around her eyes), her neck and shoulders are swollen and on the inside there would be oedema inside her head/eyes and down her throat affecting her swallowing and restricting her breathing.

It sounds like she’s developed superior vena cava syndrome which is a restriction on the blood flow from the head/shoulders returning to the heart. Elevating the bed head has helped to reduce the facial/head oedema but apparently not in the chest.

The recent CT scan (Tuesday 12 Feb) was not helpful in viewing the vena cava so she is booked in Monday 26th Feb to have an angiogram (wire catheter into the vein) to assess the actual flow and with the possibility of a stent to hold open the vessel. This could relieve the restriction of blood flow immediately if it is confirmed that her venous return is impaired due to compression.
The other news from the CT scan is not good. Masses thought to be metastatic spread have now appeared in her liver. This is a serious complication, but we are grateful she is not symptomatic as yet.

She’s doing a fabulous job with continuing recordings about her life story. We have 100s of hours of taped memories and experiences. A couple of days ago we found hundreds of long letters (mostly from the 40s&50s) under the house, forgotten for over 35years. What treasure!! Many long letters and all the daily details and extraordinary events. War time, peace time, suitors, inlaws, coronation, family deaths, weddings and romantic letters (Mum and Dad). I tell you, there’s a book’s worth of dialogue in that lot, but we’d be a long time figuring out the order because they wrote so often that there is only the day of the week on most (not date, month, year!!) – which will make a fine diary of random days.

Well, Mum is not happy about all this getting old and sick stuff but she sure loves her time with people and is appreciating life. The light of her faith is burning brightly and she keeps saying it comes through her, not from her. Experience of love first came through Dad but most of all she feels God’ love and wisdom flow out through her.

We’d value your prayers and support, of course.
Life is so full and busy we hardly know what’s the most important job or activity for the day.

Chris is back at work (up to 5 hours now) and though the arm break is healing, her shoulder is still pretty frozen. Biggest concern, her spinal fracture was not showing any healing at 3 months, so a scan in the next weeks will indicate if it is just very slow, or if it’s going to be a non-resolving break that might need surgery for an implant. Having a mm crack will usually be not problem, but Chris’ bone has at least a 5mm gap for the new bone cells to jump across and form a new structure to ‘concrete’ around.

Her chestnut horse has gone with a professional eventing rider to take to shows with the aim of improving his condition and profile again and with the expectation of selling him in the competitive show circles. Old grey Jo is her ‘pet’ horse and he’s staying put. Chris, Mark and Michelle now have a cute bundle of energy in the form of a GRoodle puppy (Golden retriever x poodle). ‘Baby’ proofing the house again…

Mum’s dog Mitsy passed some pretty bluey/green doggy-doo last week probably from eating a rat bait (I’ve been at war with the critters in the shed, but can not imagine whare she might have got a bit?!) Anyway, she’s been on Vit K medicine and having blood tests in the middle of a lot of other things, but it looks like she’s just fine.

School’s back and it only seems like a minute ago since they started, and yet the hols went so fast I can not believe it! Steve’s still working at Dick Smith but is realising how hard it is to keep up with school work, and study now. Leah is thrilled to be a big year 6 and Benny is blitzing his work in year 3 (he went from yr1 to yr2 last year). I must show you his beaut story when I can bring it home … something about O sounding words where he tells us about "the goal in his soul to make mould" - Inspiring!

God bless you all,
Beth, for everyone in my family that agrees with me

Tomorrow, every day

Time ....
Well, time took on a whole new perspective.
And I don't like it.
Give it back, I want more.

Mum saw the Doc on Friday (8 Jan) and the pieces finally fell into place. At last it makes sense.
The renal doc was happy with her, the thoracic doc was happy with her, the oncologist (Tuesday!) was definite it was nothing to do with the cancer and said it was "slow progressing, see you in July". Even the GP, who has had weeks of repeat questions about Mum's puffy eyes and sore chest/back, and shortness of breath, cough, swallowing difficulty, ear popping and dizziness only just suggested possible reason for the mystery. He said it sounded like pressure on the SVC (superior vena cava).

He wants Mum to have another scan next week to confirm, but it sounds (to me) like she has superior vena cava syndrome, which is compression of the large vein (from head/shoulders into heart) due to a lesion obstructing blood flow. It causes oedema to head, neck, shoulders and all the symptoms of back-pressure of blood to those areas. So now she is suddenly (was gradually) becoming engorged above the heart. This is really scary.

I’ve elevated the bed head and the facial swelling is visibly better, but she has not slept well. The restriction in her swallowing and airway are unimproved.

We had a fabulous African American gospel choir visiting at church today (Sunday 10 Feb) from Newark, New Jersey. Mum came along with us and one of the team prayed for her. God is sovereign and in control, He can heal or He can cure, but one thing’s for sure, Mum is safe in His hands.

Why can't we make each minute and day really count, really value the people around us. I mean, it's not just Mum, anyone could be taken at anytime yet we think we have another tomorrow every day...

Some wonderful family recent photos and news on our Collins blogspot (click on link at the top)

Christmas message from Joan

Dear Family and friends,
Sending my love to you all at Christmastime. May you treasure the season with the ones you love.

Just a year ago Ron and I were sending Christmas cards with the news of Ron’s melanoma diagnosis. We enjoyed several good months playing lawn bowls, visiting relatives, trip to the coast and home/garden activities. In March my siblings (six of us) shared a luncheon to celebrate my 80th birthday and another day Chris/Beth and families organised a lovely lake cruise. Precious family times.

Late April, Ron became unwell with the cancer spread to the brain and 6 weeks later (8 June) he died – pain free, peacefully at home surrounded by our family. His faith was an inspiration and encouragement to us. We were upheld and supported by loving relatives and friends.

I was hospitalised just 10 days earlier and diagnosed with carcinoma affecting both lungs. I am still living at home, managing by myself and with lots of help from daughters and family. Breathlessness and fatigue affect my usual activities, but I’m still finding lots to be thankful about. Ron’s book, ‘Thereby Hangs a Tale’ was written with the help of a family friend and we printed it up early this year. I am currently recording my memoirs, which Beth hopes to turn into a book as well. I have recalled many wonderful times.

Three months ago (30 August) Chris came off her horse onto a steel barrier and received a badly broken arm and also spinal vertebrae (L3), but thankfully her nerves were not permanently damaged. She was in hospital for 2 weeks and allowed home with backbrace. After 12 weeks her bones are not strongly healed but she is back at work for 3-hour days and facing slow rehabilitation.

The grandchildren have been around frequently and are all growing well. Steve (14) is finishing year 8 and started his first casual job today at Dick Smith Electronics. Leah (11) is starting yr 6 next year and loves all birds and animals. Ruben (7) moved up to year 2 after the mid year break. Michelle (7) loves people, pets and horses, of course.

Through everything we are still grateful for all our wonderful blessings as a family. God bless you and yours,

Joan and family

15 November 2007

Beth here.

Mum is very breathless on and off, puffs and coughs a lot but is still able to manage nearly normal things.

Today she saw the chest specialist. The CT scan done this week is not a lot changed from the one in May whilst she was in hospital. We are happy to know that!!

He has also suggested that some coughing might be caused by reflux (acid wash up the oesophagus) and she can try a medication that will reduce the symptoms. Might help.

The GP is to follow up/refer regarding occasional resting dizzy spells, because he does not think that's related to the lungs. He's pleased she is staying active (relatively) and occupied.

Dad's sister Wilma and bro-in-law Reg were in Canberra staying for a bit over a week (golf comp). It was really great to spend some time with them - first time since Dad's funeral. Whilst they were here, we went together and laid Dad's ashes to rest at the cemetery in Gungahlin in a lovely family garden area. It was good and right. We all miss him.

Chris has almost reached the 3 month point since her accident. The arm is healing (long way till it's really strong, needs repeat Dr visits and physio) - amazing how the bone heals around the break and resculpts the misaligned portion (photo on my website, just click link at top of this page to canberracollins.blogspot.com). She's finally been given permission to drive and her spirits are much improved. Next week she sees the neuro team (for back fracture) and has more scans - it is expected that her brace will be off following that visit. More physio and freedom of movement (but scary) for Chris.

So, just now life is good and we are happy enough for that. Mum wants us all to live life while we are alive. Good advice.
God bless you all.
With our love.

1 October 2007 Progress

1 October, 2007

Don't forget to check the http://canberracollins.blogspot.com/ site for all the info, photos and xrays on Chris over the past month.

Chris is doing much better now. She can achieve many things we did not expect her to be able to yet. She needs help with daily showers (back and arm braces off, delicate process) and some help due to one handedness. Even this is improving and she can slip her hand out of the sling, which has resulted in less pain (finally moving it out of its frozen 90 degree prison) and she can use her forearm and fingers a little. The swelling has gone down dramatically now the muscles are mobilised a bit. In bed, she is again a flat spinal patient, but when the back brace is on (all day), she can get up and walk about very well. By the end of the day, her back is very painful, so she is still on painkillers, usually twice a day and once overnight. Obviously domestics are a problem and we are all helping.


Mum alternates between steady (Ok with breathlessness when physically active) and struggling (puffing and tiredness all day long). She improved a bit past couple of weeks, but is working hard again now, maybe a virus? No doubt, she is at the limit of lung tolerance and any challenge to her system (activity or illness) is a loss she can not compensate for.


I think the ‘numbness’ is wearing off and she is experiencing more of the grief and pain from losing Dad. Perhaps the concern about Chris and routine change has been significant. She really has been incredibly outwardly focussed and interested in everything around town/world. She is always saying, "I need to learn how to do that now" and "Tell me about …" and she has been telling wonderfully detailed stories for her memoirs that we are working on.

Another bit of news .…. During the mid year break we decided to return our children to their previous school, Emmaus Christian School in Dickson. Steve was commenced week 1 Term 3 and Ruben started in week 3. We feel as though we've come home, too. Leah is still at school in Florey (StJohn’s) because her yr 5 class Emmaus is at max numbers. We’re hoping she can start soon, at least by the new school year.

More info

I'm using our blog for Chris' further updates for a while, so please check out our website...
...see top of page for auto link.
http://canberracollins.blogspot.com
Beth

Chris in hospital

3 September 2007

Dear family and friends,
Thank you all for caring and supporting.

Chris is still in hospital, flat on her back with neck brace on, only being log rolled with 4 or 5 helpers.
When Chris is moved it is sore for her back but absolutely awful for her arm, which is still very unstable and the broken parts of the arm bone move painfully.
Whilst she remains flat, the spinal fracture is being correctly managed but it is all wrong for her arm. Only surgical pin/plate will be able to stabilise the break if she remains flat for long.

The spinal fracture will be treated with an LSO which is a back brace to hold her in correct position and then the plan will be to get her up. At that stage, when she is upright, a lot more scans and Xrays will be done on the neck and lower spine, and the arm position can be corrected. The brace will have to be worn for 12 weeks. The arm will need 8 weeks to heal.

She still has a neck collar on, not moving her head, and is still being treated as if her neck might be damaged, but the CT was OK on Thursday, so a series of extension and flexion scans will be done when she is upright, and then she should be cleared to move her head and shoulders.

After being in the neurosurgical high dependency unit we are more aware than ever what good news it is that Chris should not have permanent damage, as her spinal cord and arm nerves were spared. Currently, though, we are very concerned about preserving her arm from subsequent damage until it can be positioned correctly.

Mark, Michelle, Mum and I, as well as friend Cathy, are with Chris as much as possible. Mum is pretty well at the moment, affected like us all by the shock and consequences of this accident. Very happy that Chris should recover in the long run.

Love to all, each one.
Beth for the gang