Hospital

Thanks,
Things are very busy for mum, going from one test to the next and teams of doctors in/out. Indications are that things should progress slowishly, but she is very symptomatic - a mass close to the airway must be causing more trouble than it's size would indicate.
Dad is very weak and really quiet. We will try to get him into hospital again tomorrow, it was too much for him today. He stayed with sister Wilma and Reg, bless them.
Warmest regards
Beth

Shock news

Wednesday 30 May
Mum has been recovering well from the urinary tract infection and renal specialist was almost ready to let her home. She has been very breathless and has had spasmodic dry cough for a few weeks, then worse whilst she was sick. As it was no better with the treatment that was helping the infection, we made a fuss and the Dr agreed to check everything was OK with her chest before sending her home.
A CT scan has discovered several masses in her lungs and nodules on both sides. It is possible this cancer is from the first one when she had the right upper lobe of the lung removed 3 years ago, not certain without bipsy. She is undergoing many tests and is being review by various medical teams.
Dad is shattered (us all) and he is very quiet, sleeping a lot and tragically distressed when awake. Please pray for this awful blow to be softened by God’s grace and blessing.
I have been staying at Mum/Dad's overnight since last weekend. Chris has been off this week.
Love
Beth, for Ron, Joan, Chris and families

Joan in hospital - improving

Monday night 28 May 07

Better today. Mum is definitely on the improve. Dr is optimistic that infection has not affected the kidneys and she should recover without complications. She might be discharged as early as Tuesday. Dad, Chris and I spent a few hours in with her today whilst we were there for Dad's treatment. We’re in the hospital again tomorrow for Dad’s radiotherapy (4th of 5) at 11:15am.

Dad’s sister Wilma and Reg have come down from Hawks Nest, staying for a couple of days.
We’ve had some bathroom and toilet modifications done, repairs, various equipment hire and currently awaiting wheelchair ramp. It’s a juggle.
Dad is having trouble coping with his problems, frustration and worries especially about Mum. Tough going.

We appreciate the love and prayers,
Beth

Mum in hospital

Sunday night - Monday am 12.20
Mum has been sick this weekend. She has now been admitted to the Canberra hospital (Woden) at 8pm tonight for a serious kidney infection. Mum’s kidneys are very big with large orange sized cysts and they usually function well. We actually had a gold star run through Casualty and she was seen, assessed, tests and review in rapid order. The specialist (Carney) who looks after her for polycystic kidneys has accepted her under his care, even though he’s not ‘on’. We only saw the GP (for other stuff) on Friday afternoon and were due to see Carney on Monday (tomorrow, oops, today). Dad is due over there at the hospital for 3rd radiotherapy tomorrow/Monday at 1130.

Dad is distressed. He has been so worried about her, that we were keeping something from him, and now she’s ‘new’ sick, he’s not reassured. I have been staying overnight as he needs full assistance. Chris has been here till just now. Tom has taken tonight’s night duty off.
Please pray for Mum’s full and rapid recovery, and release from hospital as soon as possible. And for peace, assuage Dad’s distress.
With Love,
Beth

Day 2 Radiotherapy

Friday
Not doing well today. Dad's legs are very much weaker, especially the right which is paralised with foot drop. They are suddenly becoming quite swollen. His right hand is playing up and not well behaved today. This morning he was really slow and needed help with everything all day, he is not able to walk without complete assistance. Yesterday he could barely manage with the wheely walker.

I don't think he could hear a word I said today (squeaky voice for 3rd day) and did not seem to understand much of new discussions, but he knew we were up at radiotherapy and that we needed to buy biscuits. He's been very tired, quiet and slept all day, mostly on the lounge.

This could be partly because of the side effects of radiotherapy, though he was very bright last night (seemed like he'd gained a week).
People say there are good days and bad days.
We are very blessed, and thank God for all the time we are together.

Wise words

"If you get to thinkin' you're a person of some influence,

try orderin' somebody else's dog around."

"Yesterday is history, tomorrow is a mystery.
Today is a gift, that is why it is called

The Present."

24 May 2007

Dear Beloved (Hi Maria)
Today went pretty well. It was Dad’s first day to receive radiotherapy treatment. Plan is for 5 days, whole brain, low dose with low risk of unpleasant side effects, except maybe hair loss. He had no problems with it and was keen to go into Civic afterwards to personally thank the RSL advocate who assisted with the applications to Dept Veterans affairs regarding the Melanoma. They were both very moved – Dad, because he was so grateful to have a positive decision so quickly and Arthur, because many claims are denied so he was happy to see Dad’s positive result and that he personally came in to see him.

Getting into the car was difficult, but at the hospital I was able to aquire various helps. The equipment loan service has provided us with a wheelchair, wheely walker and shower chair. So after the tricky bit of helping Dad in/out of the car to the wheelchair, we are now pretty mobile and outings seem a lot less daunting. Most importantly, he can use the wheely to get around the house in more safety. The legs are very weak and the right one is basically paralised, with a foot drop that drags, gets in the way and trips him up.

The home care team have been out and activated all kinds of services and consults, phew! Occupational therapy, Veterans assessment, physiotherapy, care assist, domestic help, modifications, etc….

Mum is feeling better and happy the tummy problems are settled. Will be even happier when I stop giving her anticoagulant needles, when the warfarin is back up to therapeutic strength. She’s still in trouble with a shoulder injury that happened over a month ago and still limits her abilities and disturbs sleep. She’s coping with so much, doing all the things to help Dad and the things he would usually have done. Chris and I are helping lots, but she’s the one on duty at 3am when Dad’s up crashing around the hall or fiddling with his CPAP (sleep apnoea) machine.

Chris and Mark have their new (old) car and for a good price too. She’s taking days off work, depends what she has on at work and what Mum/Dad have on, too. It’s a strain for her. I think Mark’s Dad goes back into hospital next week for an operation.

The girls are the healthy kids. Michelle and Leah faithfully trotting off to school, but Ruben and Steve have been home sick with coughs and asthma – cold weather hit suddenly. I am speaking with a polyphonic, ultrasonic, modulating voice of persisting laryngitis or something like that. No throat, nose head problems, but speech is wacky/squeaky.

With thanks, each one of you, for loving thoughts and prayers and actions.
As I’ve said before: we appreciate those who ring, and those who don’t, those who visit and those who don’t. Everybody pray, and thank the Lord for His blessings and mercy.
With warmest thoughts and love,
Beth

Mon 21 May 2007

Mum's endoscopy went very well (if you can say that about such a thing…) The results explained a lot and relieved many concerns. No current stomach ulcers, but diverticular disease responsible for the recurrent acute abdominal pains. Nothing of sinister nature. Few more days of needles, back onto the warfarin, and back to normal diet.

Poor Dad, chose to stay home but was down and out all day, and suspicious we were concealing problems until Mum returned. Chris was off work, popped into hospital to see Mum, but mostly stayed with Dad.

We received formal notification today that Dad’s Vets Affairs claim (for the melanoma) has been accepted. He is very happy about that. He will be eligible for some extra assistance and allowances and is pleased to know ‘Mum will be taken care of.’
In the next couple of days, Palliative care will be out to see how they help us take care of Dad at home and provide some advice and resources.

Our thanks for your love, and prayers. Mum said today she must be covered in prayer because she was so calm.
With love,
Beth, etc

Snooze

Dear all,
Dad’s losing mobility and must walk with one person when he’s not in the house. From room to room he potters around holding himself along the walls, but does not want help or an aid. The right leg lets him down, dragging constantly and the left is affected now, too. It annoys him badly and he gets mad as! He’s great at sitting up to the table and plopping on the lounge, and test drives all the chairs in the lounge room from time to time. He plays a bit with the TV and video, but not really watching.

Dad is eating well and sleeping a lot of the time. He has a few bright hours in the mornings, then sleeps on/off until he goes to bed for afternoon nap (till dinner) then has after dinner nap till bedtime. We are truly grateful he is so comfortable, despite the distress of losing mobility and abilities.

We went to have his new hearing aid moulds put in, and they tested his hearing. The aids are working at optimal level, but the processing and understanding of speech in the brain is causing him difficulty understanding.

He is due to attend radiotherapy on Thurs (24 May), Fri, Mon, Tues, Wed this week and next. Only 5 days, low dose, whole brain treatment. The aim is to reduce the size of the melanomas in the brain and alleviate the symptoms for a while. He may lose his hair (Tom and Steve want to shave if he does) but we are assured that side effects will be otherwise minimal. It make take a while for any benefit, ??days or more??

Some really wonderful news: All of us very relieved and grateful, tears again… Dad’s melanoma was assessed by Veterans affairs and they phoned the other evening to say it would be recognised as war related. (Skin Specialist wrote terrific supporting letter). This means he will be recognised as extremely disabled and later Mum will be taken care of by Vets Affairs (medical and financial assistance).

Mum has had a gruelling weekend of needles, dietary preparation, fluids and purging for the miserable joy of a hospital day case endoscopy tomorrow (21 May) Late lunch will be sweet for her. She’d started to feel a bit better and anticipate a cuppa before this business, so will be very happy to have a real cup of tea afterwards (it’s been about 2 weeks . . . ) Chris is off work tomorrow too.

It’s very difficult for Mum (+us) as Dad drifts. One day he’ll be up, coat on, ready to go, taptap! at 730am (for a 930 appointment) and the next he’s still trying to get organised and wash as we run late for something else. Not his style at all! He won’t let anyone push him, and is very reluctant to let anyone help. Finding the misplaced teeth and hearing aids is an entertaining way to spend some time. Working the sleep apnoea CPAP machine (when he’s fiddled with the settings in the night) has been another steep learning curve, because he’s always done that himself, too.

Chris and Mark are still on the hunt for a sound car, a small Toyota Corolla sedan. After deciding to buy one last week, a REVS check turned up a financial encumbrance (going back 9 years, could have been a lot of money then) so that’s another one to pass up. Tom and I had bought a 7 seater wagon (Inga the Swedish blonde…) which is great also for running Mum and Dad. Chris and Mark have had our old car to use, but they don’t want to buy the Seca hatch off us. So, still looking. Must be frustrating.

With thanks for all the loving thoughts, messages and prayers.

Beth for Tom, Steve, Leah, Ruben
Ron, Joan
Chris, Mark, Michelle

Holding their own

Dad and Mum are managing at home, with lots of support and help. Mum is better than last week, tummy pains settling and gastritis improved a bit. She is not as breathless as last weekend. Maybe antibiotics helped, if it was a respiratory infection. So she's getting around a lot better. We saw the Doc today and organised an endoscopy next Monday (21st). Not happy to have to face that just now, but possibly better than any other date we could guess at in the future. All the hassles with stopping warfarin and going onto anticoagulant needles between now and then, and nasty purge prep over the weekend. Blood tests, etc. A couple of Mum's sisters popped in today, too.

Dad is holding his own, just. He's fiercely independent and walks very carefully around the house but is at high risk of a crash. His right leg is very weak or 'dead' he calls it. Pressure from the brain lesion on the left, presumably, as he denies bone pain.
Mother's day was not a good day for him. He was very disconnected and muddled. But, overall, he's not a lot worse over the past week, though had earlier been deteriorating so rapidly it was alarming. He is relieved that his business instructions are taken care of and is happy when we're about. Gets pretty grumpy and irritable, but is also very loving and appreciative. Mornings are usually better for him. He sleeps a lot the rest of the day.

Mother's Day
Off to hospital appointment tomorrow (wed) to be fitted for head thingy in preparation for radiotherapy starting next Thurs (24th May)

I try and take phone off hook for afternoon rest if they're not out.

What's happening now...

Hello dear friends and family,
Beth here again – on behalf of Mum and Dad and Chris.
Thank you for your love and support. We appreciate prayers more than you can know and know God’s grace and presence rests on us, even in these rough, tough times.
Actually, Dad’s not very doing well. These 2 weeks have brought almost daily changes. The cancer is obviously developing. No pain, thank you Lord!
He is still developing more symptoms from the melanoma lesions now in the brain. He is frustrated by the word block and would likely use some bad words about that, if they would just make themselves available. On the other hand, he has come up with some pretty original words of his own, although they usually make some kind of sense (like: murwix for Dr. Mark Hurwitz. Like: ambassaderry for Embassy) And of course, the one word he can never get out is melanoma, as hard as he tries. But he is still able to pretty much say what he wants, even though deafness (hearing is probably affected also) also contributes to communication difficulties.
Whilst earlier, Dad was focussed but words came out wrong, now there are distinct episodes of confusion. But mostly, he’s on the track, it’s just that he loses concentration and has to catch up again, or he does not hear well enough. We’ve had a few conversations in which he’s talking about one thing, and we’re talking about another thing and neither of us have any idea what the other is going on about. Results in tears, anger or laughter . . . then, oh yeah, someone ‘gets’ it - hopefully.
Other effects of the brain lesions: He is missing chunks of vision, and probably has difficulty processing what he does see. Writing is almost impossible, although he is pretty good with his signature. The legs are letting him down sometimes, not being exactly where they need to be, so he has tripped hard a couple of times, without falling, fortunately. And he is becoming wobbly and tottery.
It’s probably the steroids to reduce brain swelling that are making him get the munchies, so food snacks are welcome.
He is coughing up a lot of secretions and puffs/gasps a lot when he walking around, or doing things. It is great he is able to actively cough to clear his chest. We will be in trouble if he becomes immobilised.
Dad saw the radiation oncologist today, Wed 9 May, for an opinion on brain radiation. We had all pretty much resolved not to go down that line, not wanting to make things worse or endure nasty side effects, recurrent trips to hospital, for maybe minimal benefits. However, the specialist explained that the radiation to the whole head (for multiple lesions) does not have significant side effects (hair loss only) and in the low dose/5day course has good effect in alleviating symptoms caused by the brain tumours. No extra time, but hopefully better quality. So we are happy to accept the radiation therapy but is does not start for another 3 weeks. It seems a long time away, considering the ground Dad’s losing at the current rate. He sees the medical oncologist again next week.
With or without this option, there is still the possibility of convulsions or a bleed, but no way of predicting this.
Mum has been out of action, really unwell over the past week. Actually, on Saturday 5/5 we were stuck in casualty for hours and tried to figure out how to get them both seen. Dad had broken off his eyetooth but the root was sharp and above the gum – should have seen emergency dentist. Did not think it could be reattached but because of his condition I was concerned that it could become septic. Always happens Friday night! In the end, Mum came home on antibiotics and antispasmodics (gut pain ?diverticulitis) and Dad had is tooth sealed over (and next tooth needed filling, too), as it was too risky at this stage to try extraction ('cos he's on Dexamethasone). Mum is off to the gut specialist next week and the renal physician (for the massive polycystic kidneys) week after.

Chris has had an awful couple of weeks, desperately concerned for Dad and Mum but torn in many directions and having things go wrong. A car accident (dratted insurance has dropped from expected $3300 down to under $2000!) and a lost mobile phone (very expensive to replace, so ring her and tell her how great is to talk to her on her new phone). Working full time, her own recently diagnosed coeliac disease (no gluten please!) and Michelle with medical problems. Then there’s her husband Mark’s parents. Big worries here. Mr Sawa was admitted to hospital and he is carer for Mrs Sawa, who needs full assistance. His story was looking grim for a while but he got himself let out. They are both desperate to stay at home, even though they have both been rated by aged care assessment for needing nursing home care. So they are very dependant and needs lots of help too. Poor Chrissy, has so many responsibilities and commitments. It’s overwhelming.

It has been sad to be reorganising the finances and assets and Vets affairs claim – I never wanted to take responsibility there. It has involved some gruelling days for Mum and Dad as we went from one thing to the next to streamline their affairs - Appointments and interviews and traipsing about. It has been an emotional as well as physical, not to mention mental strain for all. I am so really proud of how well they have planned and provided, as well as having a pretty good system for keeping files, etc. I am not business savvy, but between us we have probably made one average sort of team for the job. I am inspired to work out a better system at home now.
Well, there it is! Some more details to put you in the picture. We have so much to be grateful for and feel such love and appreciation to have this time. There is no sense of despair or defeat. But we still pray for mercy and wellness, and time, more time together. We all feel God is in control and trust in Him.
Love and blessings to all,
Beth for Ron, Joan and Chris (and our families)

Julie and May pop in

Hey, look who dropped in with good ol' Goulburn Bryant's pies for lunch... Joan's sister May and daughter Julie.

We've had lovely visits and messages, and are grateful for those that come in and those who don't. And for those who call, and those who don't. And for your consideration and care, whether we see you or not.

Thank you everyone for the love you're sending, and prayers especially.

Visit up North

On 30 April, Beth took Ron and Joan up to visit his sister Wilma and Reg and their family.
It was a precious time of sharing and recollecting. What a lovely time. How blessed are we with so much love!




















And funny to know age is no barrier to sibling squabbles . . .