Went to work again this morning and that seemed to be alright. It does ease my worry being able to work a little bit. I think also it’s easy to think that I have to be around all the time when at the moment I don’t. I think I might also start seeing some clients on Monday morning if I can get some guaranteed respite time.
This afternoon I picked up the towels I bought on an online auction and got Mum’s medication. Changed beds, did washing, fed cats etc.
My Mum has just done something that has infuriated me. To give you some background – for as long as I can remember she has always/frequently had a selection of things for me to read when I’ve gone to her house. For as long as I can remember I’ve always declined to read them, and at times explicitly asked her not to do this. She has always struggled to accept this, and thinks I’m ignorant for not wanting to read these things. She has just handed me, or tried to hand me an article on Richard Pratt out of today’s Age with his mottos for life or something (he’s something of a womanizing company mogul in Melbourne) and told me to read it, “go on it won’t take long it’s even in big print”. I said no that I didn’t want to, to which she variously replied, you’ve never wanted to read anything I’ve given you (true) and your loss (I doubt). There are a couple of things this has made me feel. Absolutely disrespected, that she is not able to respect a very basic thing that I don’t want to do. Also as I was fuming and thinking about replies to her, reasons to give for not wanting to read it, I realized that I have a tendency to come up with fantastic reasons why I can’t do things and largely I think this has been because she has often put me in positions where I’ve had to do this to justify myself, because a simple no is not good enough. I feel really upset that even now when she is so unwell she doesn’t get this. It's likely I suppose that she'll never get it.
My partner's parents are back tonight, he's thinking of different things to do at the weekend.
Thursday, March 15, 2007
Day 4, 15.3.7
Long day today. Saw the oncologist. Realised that I’d been keeping the whole “cancer” thing at arm’s length, but seeing him brought it right back into perspective: Mum is not just unwell, recovering from something, she has a terminal disease. Because the primary is in the bowel there is a gentle, tablet form of chemo she can try if she wants. The main side effect is likely to be fatigue, but because she’s older the side effects might be quite difficult. He’s given us a week to consider it. He says that it's entirely up to Mum and he'll totally understand if she chooses not to have treatment. He also talked about radiotherapy for the tumour in the bowel - this tumour could become a problem and cause an obstruction, but he'll wait 'til next week to talk about this further.
The hospital rang to say they'd found Mum's wedding ring. She lost this on the day of the diagnosis. They found it in the shower. My brother went to the hospital to get it.
We went to the solicitors to get a copy of Dad's will and then I posted all the paperwork I've been gathering to my friend who's a solicitor. We're trying to put Mum and Dad's affairs in order before either of them die, trying to work out how to structure their finances - the house and their shares.
Finally, we went to Mum's house, our old family home. I think it was very melancholic for Mum to see it, and realise that so much of the things that she has collected over her life just don't matter anymore. She got together a few personal items, and then we came home. It was a hot day as well so it wiped her out a bit.
Later I spoke with my sister in law about her coming over to stay with Mum while I'm at work. She can come every second week, and we said to start from next week but it might be better the week after when/if Mum starts Chemo.
Mum seems inclined to start Chemo - give it a go and see what happens.
The hospital rang to say they'd found Mum's wedding ring. She lost this on the day of the diagnosis. They found it in the shower. My brother went to the hospital to get it.
We went to the solicitors to get a copy of Dad's will and then I posted all the paperwork I've been gathering to my friend who's a solicitor. We're trying to put Mum and Dad's affairs in order before either of them die, trying to work out how to structure their finances - the house and their shares.
Finally, we went to Mum's house, our old family home. I think it was very melancholic for Mum to see it, and realise that so much of the things that she has collected over her life just don't matter anymore. She got together a few personal items, and then we came home. It was a hot day as well so it wiped her out a bit.
Later I spoke with my sister in law about her coming over to stay with Mum while I'm at work. She can come every second week, and we said to start from next week but it might be better the week after when/if Mum starts Chemo.
Mum seems inclined to start Chemo - give it a go and see what happens.
Day 3, 14.3.7
I went to work this morning. While it felt a bit odd to be doing this, something that is quite normal, it also felt like a good thing to do, as much to know that there’s some money coming in as anything. Got Mum set before we went, medication, breakfast, food for the day, and left with some trepidation. Work was fine, rescheduled appointments I’d missed last week, one phone call, two files reviewed. Home this afternoon – Mum coped quite well, ate up everything there was, watched tv and read. The landscapers have finished for the week, they’ll be back next week. Spoke with Safety Link to organize Mum’s personal alarm, spoke with my brother who was insistent that his wife also be put down as a contact even though she’s 2 hours away. Bought Metamucil, thermometer, and copied the title for the house and Mum and Dad’s Deed Poll certificates. All in all a busy day. I’m very tired today as I didn’t sleep well last night, I often don’t on Tuesday nights, but was also awake listening to Mum cough. I was worried because she’s had pain in her back on the right side and thought it could be pneumonia developing, but she says that pain is easier today. She’s taking one-two lots of panamax between the oxycontin slow release. Tomorrow is oncologist day.
Day 2, 13.3.7
A busy day today. I remain fixated on Mum eating as much as possible, so today have made pumpkin soup which went down a treat. I’ve also tempted her with apple juice, grapes, a banana sprinkled with sugar (the sugar was her idea!), leftover bolognaise for lunch, and a high fibre cereal with fruit for breakfast. Her appetite is really no problem at the moment!
I’ve made loads of phone calls: to the solicitor to get a copy of Dad’s will and the title of the house, to Dad’s nursing home to explain to the family liaison officer what’s happening with Mum, to the palliative care people to refer Mum to them, to MEPACS – a service which provides personal alarms to people, to the GP to check that she was ok working with someone who needed palliative care, and to make an appointment.
(Just got interrupted, the cat did a big stinky shit about a metre away from me and I had to move it or die!).
We went to see the GP. She was very good, she’s someone I’ve worked with for a long time and knows my partner and I. Mum’s having pain in her back on the right side opposite her liver. She had pneumonia about four years ago and her chest sounded crackly which could be a left over from this. The GP wants us to get this checked by the oncologist on Thursday. She also thinks a bone scan will be necessary to see if the cancer has gotten into her bones. The appointment just about wiped Mum out. Mum is pretty deaf and so hearing people takes some effort, ok if you’re well, tiring if you’ve got terminal cancer. The GP said that constipation is going to become a problem because of the medication Mum is taking, so Coloxyl & Senna and Metamucil daily is non-negotiable.
When I got home after running around getting the meds, returning something for the computer, buying an antenna for Mum’s tv, and collecting Mum’s Tattslotto winnings ($45) the palliative care referral person called. She was sensational. I was able to tell her that I’m doing a lot of this alone because my brother is a long way away, and we don’t have any other relatives in Australia, and I’m flying blind. Also that I’m concerned that Mum is experiencing more pain than she should be. She explained the difference in the two types of oxycontin tablets Mum has – one is a slow release and the other is a quick release, so if she’s getting breakthrough pain take the quick release, and/or panamax. If this doesn’t touch it give her more 20-30 minutes later and keep doing this until the pain is controlled. Apparently there’s no limit with palliative care, you keep administering the medication until the pain is controlled. I have to keep a record of what pain killers Mum is taking as this will help to indicate whether the slow release medication has to be increased, ie if she’s taking a lot extra then she might need to have more of the slow release. She said she’d call again after our appointment with the oncologist. Apparently he’s pretty good as oncologists go. It seems they will take Mum on as a client of their service which I was relieved to hear.
Mum told me today that she has asked the Anglican minister who visited her in hospital to preside at her funeral, and she’s told Suzanne what music she wants. Of course I teared up at this point, but was relieved that Mum has organized this. Suzanne was very nice and funerals where the minister has never met the person are just horrible.
The plan is for me to go to work tomorrow, just for four hours. I don’t know how this will go, either in terms of Mum being here on her own or me being able to concentrate but I’ll give it a go.
The landscaper started today, they’ve excavated a lot ready for the pavers. They’ll be here tomorrow as well, and then three days next week.
Dinner is lamb chops that I’ve marinated in wine, lemon, olive oil and rosemary, probably with a little salad and some sweet potato.
Things to remember to do:
Neverfail
Print Carer’s allowance form & health professional form
Oncologist – Mum’s pain, pain in left back, bone scan
Call Karl tomorrow
Do mail redirection
Copy title of house
Get copy of Dad’s will
Contact the minister
Appointment with GP next week
I’ve made loads of phone calls: to the solicitor to get a copy of Dad’s will and the title of the house, to Dad’s nursing home to explain to the family liaison officer what’s happening with Mum, to the palliative care people to refer Mum to them, to MEPACS – a service which provides personal alarms to people, to the GP to check that she was ok working with someone who needed palliative care, and to make an appointment.
(Just got interrupted, the cat did a big stinky shit about a metre away from me and I had to move it or die!).
We went to see the GP. She was very good, she’s someone I’ve worked with for a long time and knows my partner and I. Mum’s having pain in her back on the right side opposite her liver. She had pneumonia about four years ago and her chest sounded crackly which could be a left over from this. The GP wants us to get this checked by the oncologist on Thursday. She also thinks a bone scan will be necessary to see if the cancer has gotten into her bones. The appointment just about wiped Mum out. Mum is pretty deaf and so hearing people takes some effort, ok if you’re well, tiring if you’ve got terminal cancer. The GP said that constipation is going to become a problem because of the medication Mum is taking, so Coloxyl & Senna and Metamucil daily is non-negotiable.
When I got home after running around getting the meds, returning something for the computer, buying an antenna for Mum’s tv, and collecting Mum’s Tattslotto winnings ($45) the palliative care referral person called. She was sensational. I was able to tell her that I’m doing a lot of this alone because my brother is a long way away, and we don’t have any other relatives in Australia, and I’m flying blind. Also that I’m concerned that Mum is experiencing more pain than she should be. She explained the difference in the two types of oxycontin tablets Mum has – one is a slow release and the other is a quick release, so if she’s getting breakthrough pain take the quick release, and/or panamax. If this doesn’t touch it give her more 20-30 minutes later and keep doing this until the pain is controlled. Apparently there’s no limit with palliative care, you keep administering the medication until the pain is controlled. I have to keep a record of what pain killers Mum is taking as this will help to indicate whether the slow release medication has to be increased, ie if she’s taking a lot extra then she might need to have more of the slow release. She said she’d call again after our appointment with the oncologist. Apparently he’s pretty good as oncologists go. It seems they will take Mum on as a client of their service which I was relieved to hear.
Mum told me today that she has asked the Anglican minister who visited her in hospital to preside at her funeral, and she’s told Suzanne what music she wants. Of course I teared up at this point, but was relieved that Mum has organized this. Suzanne was very nice and funerals where the minister has never met the person are just horrible.
The plan is for me to go to work tomorrow, just for four hours. I don’t know how this will go, either in terms of Mum being here on her own or me being able to concentrate but I’ll give it a go.
The landscaper started today, they’ve excavated a lot ready for the pavers. They’ll be here tomorrow as well, and then three days next week.
Dinner is lamb chops that I’ve marinated in wine, lemon, olive oil and rosemary, probably with a little salad and some sweet potato.
Things to remember to do:
Neverfail
Print Carer’s allowance form & health professional form
Oncologist – Mum’s pain, pain in left back, bone scan
Call Karl tomorrow
Do mail redirection
Copy title of house
Get copy of Dad’s will
Contact the minister
Appointment with GP next week
Day 1, 12.3.7
My partner's prents went to Tasmania today for four nights. They're visiting from the UK (good timing, huh!). They got themselves packed and I took them to the airport about 1030am. Mum got up and was sitting quietly really for most of the day. She had a good breakfast, Crunchola with fresh blueberries and tinned fruit. My friend and I were talking last week about the importance of her eating, and that the problems often start when they stop eating and lose weight. I have bought a selection of treats to tempt her with! I made minestrone from scratch for lunch, which was delicious, and for dinner I made bolognaise sauce which we had with gnocchi. She also had fruit puree mid afternoon, and a little left over canned soup and toast mid morning. For dessert she had weight watchers Berry Surprise icecream! She reported a good bowel movement midday!
Mum had some pain today, about 11am. This worried me. I’m not good with pain, or other bodily “things”. My Mum was a nurse and when I was young I worried a great deal because I thought I also had to be a nurse and I didn’t want to be. Vomiting, pain, urine, faeces, etc., are just not things that I cope well with and I’m wondering how much of this I’m going to have to deal with. I also tend to catastrophise pain, think that it’s a sign that things are absolutely dreadful. The way we dealt with it was by giving her panadol. She’s having oxycontin twice a day and anti-nausea stuff because she reacts badly to morphine. Mum slept this afternoon.
Today I also managed to go to Schots to change an antique Chinese cabinet we’d bought yesterday that was too big for the alcove, and then picked my partner up from work at 5pm. It’s good for me to get out and do things because I think I mistakenly think that I have to be around her all the time, babysitting her, but she tells me I don’t need to. Tonight I’ve spoken to friend Karl, and also to my brother and his wife. I’m tired now so I think I’ll go to bed. I’m reading The Poisonwood Bible which is quite a good book and also reading Jonestown by Chris Masters.
Mum had some pain today, about 11am. This worried me. I’m not good with pain, or other bodily “things”. My Mum was a nurse and when I was young I worried a great deal because I thought I also had to be a nurse and I didn’t want to be. Vomiting, pain, urine, faeces, etc., are just not things that I cope well with and I’m wondering how much of this I’m going to have to deal with. I also tend to catastrophise pain, think that it’s a sign that things are absolutely dreadful. The way we dealt with it was by giving her panadol. She’s having oxycontin twice a day and anti-nausea stuff because she reacts badly to morphine. Mum slept this afternoon.
Today I also managed to go to Schots to change an antique Chinese cabinet we’d bought yesterday that was too big for the alcove, and then picked my partner up from work at 5pm. It’s good for me to get out and do things because I think I mistakenly think that I have to be around her all the time, babysitting her, but she tells me I don’t need to. Tonight I’ve spoken to friend Karl, and also to my brother and his wife. I’m tired now so I think I’ll go to bed. I’m reading The Poisonwood Bible which is quite a good book and also reading Jonestown by Chris Masters.
CANCER
Prologue: On March 7th 2007 my Mum was diagnosed with cancer, but not a cancer that can be beaten because of the secondary that has seriously affected her liver, and because of her age (she’s 80).
Mum had really been ok until about 10 days ago. A bit tired maybe, and she has since told us that she’d had night sweats for about two weeks, and also changes in her bowel for about six months, more diarrhoea than was normal. But nothing dramatic, no blood in the stools, no vomiting, just general low grade changes. Then about 10 days ago she had pain down her right side and my brother took her to ED. They diagnosed constipation and sent her home, but told her to follow up with her GP as her liver function test was abnormal. The next morning she rang me because the pain had returned. We spent the day in ED while they did further tests and a scan of her liver, and then told us that her liver didn’t look normal and she needed to be admitted so this could be investigated further. We weren’t thinking it was cancer though.
Initially when she was in hospital we were thinking cirrhosis, she’s not a big drinker but we knew that you could get cirrhosis in other ways. I was berating her about her diet that is high protein, high fat and low fibre, and not what a liver likes. My Mum has had difficulty with allergies for a long time, and this has dramatically affected her decisions about what she eats, consequently she’s eaten this strange diet which I was sure had caused some adverse affect to her liver. At this stage we were still feeling pretty positive that she had something that could be beaten or managed.
Then the consultant came to see us on the second day. He told us that in his opinion the scan indicated that her liver was badly affected by cancer, and that this was a secondary cancer. He thought the primary was either in her bowel or breast. The first step he said was to do a liver biopsy and this would confirm the cancer diagnosis and the type of cells would indicate where the primary could be. He said that the liver biopsy was done under local anaesthetic guided by ultrasound but really my Mum’s liver was so badly affected that he could go in anywhere and they would be sure to get cells. He wasn’t talking about a liver with suspicious spots, he was talking about a liver that was riddled with cancer.
The biopsy was done on Monday, the tests came late on Wednesday. A particularly bad sign, I thought, was the Anglican minister who attended twice on Wednesday the second time just before we got the news. The news was bad. The diagnosis was confirmed. My Mum has cancer of the liver and the cells indicated that the primary was either in her bowel, stomach or pancreas. The registrar was very patient with us explaining what this all meant, but making no bones about the fact that it was terminal. He wouldn’t be drawn on the question of time. What he did want us to consider was whether we went looking for the primary? It seemed at this point that we had a choice – she could have a gastroscopy/colonoscopy or not. But there were good reasons to go ahead with these scopes: 1. It would indicate whether the primary was likely to cause problems in the future, ie cause a blockage or obstruction, or bleeding, and 2. if it was bowel cancer it would be important for my brother and I to know because there is some hereditary risk. We decided to go ahead. My Mum was prep’d for the colonoscopy on Thursday ready to have it done on Friday.
I asked her consultant to refer us to an Oncologist and we saw him Thursday night. He was a young Chinese Australian. He told us that yes my Mum’s condition is terminal, but that depending on where the primary cancer was there could be some treatment options. My brother and I perked up at this. If the primary was in her pancreas there really wouldn’t be any options, and the end would be quick and nasty, three months at the most. If the primary was in her bowel there could be some gentle chemo options. Basically if we didn’t do anything with a primary in her bowel she would have 3-6 months, with some gentle chemo it might extend her life a little – in someone younger than her it could buy them 2-2.5 years, but not for an 80 year old. He was hesitant to put a figure on it, I was left with some hope but not a lot. I think my brother decided she’d be around for another 18 months – 2 years. He thought this was somewhat funny as we’d decided that on discharge Mum would move in with me and my long suffering partner Guy, and that suddenly this was looking like a more extended stay!
Anyway, the colonoscopy and gastroscopy found a large tumour in her bowel. We’re to see the oncologist this Thursday to find out what this means, what treatment there might be.
Saturday we went to my Mum’s and got things for her to move into our house, her bed, some occasional tables, her tv, and brought them back to set up a room for her. I took her Spode dinner set that I’ve always wanted but suddenly don’t want anymore. My brother took some things. It seems astounding that we accumulate things, possessions and property, through our life that finally mean nothing. Will the salvos come and get the furniture, or will they think it’s too old and worn out for them? Should we put it out for the hard rubbish collection in April? How will that feel, putting out things that my Mum and Dad accumulated, worked hard for, on the nature strip. This is all very unknown territory for me, and very very difficult at times.
Sunday my Mum was discharged from hospital. I brought her home to her room that we’d set up. It looks very nice, we have a house that we’ve been renovating. The floors are polished, the walls are white, we have plantation shutters on the window, it looks very pleasant. I forgot to mention that in the midst of all this my parents in law arrived for a visit from the UK. They brought Mum beautiful pink roses and hydrangeas. There’s a sofa in her room so she can sit in peace and quiet.
A couple of extra points:
- my father has dementia, he has had this for about 6-7 years and has been in a nursing home for maybe 2-3 years. He is in the final stages of dementia and no longer knows who I am. My Mum has been going into the nursing home 4-5 days per week to make sure that he eats lunch because he’s inclined not to want to eat, so for the last 10 days no one has done this, apart from my brother and I when I visited for my Dad’s 82nd birthday on the day the consultant gave us his provisional diagnosis.
- we don’t have any family in Australia, my father is Polish and when repatriated from the farm he was a slave labourer on in Germany during the war went straight to England. He met and married my Mum there in 1962 and they emigrated to Australia in 1963. I have taken some time off work to look after Mum.
Mum had really been ok until about 10 days ago. A bit tired maybe, and she has since told us that she’d had night sweats for about two weeks, and also changes in her bowel for about six months, more diarrhoea than was normal. But nothing dramatic, no blood in the stools, no vomiting, just general low grade changes. Then about 10 days ago she had pain down her right side and my brother took her to ED. They diagnosed constipation and sent her home, but told her to follow up with her GP as her liver function test was abnormal. The next morning she rang me because the pain had returned. We spent the day in ED while they did further tests and a scan of her liver, and then told us that her liver didn’t look normal and she needed to be admitted so this could be investigated further. We weren’t thinking it was cancer though.
Initially when she was in hospital we were thinking cirrhosis, she’s not a big drinker but we knew that you could get cirrhosis in other ways. I was berating her about her diet that is high protein, high fat and low fibre, and not what a liver likes. My Mum has had difficulty with allergies for a long time, and this has dramatically affected her decisions about what she eats, consequently she’s eaten this strange diet which I was sure had caused some adverse affect to her liver. At this stage we were still feeling pretty positive that she had something that could be beaten or managed.
Then the consultant came to see us on the second day. He told us that in his opinion the scan indicated that her liver was badly affected by cancer, and that this was a secondary cancer. He thought the primary was either in her bowel or breast. The first step he said was to do a liver biopsy and this would confirm the cancer diagnosis and the type of cells would indicate where the primary could be. He said that the liver biopsy was done under local anaesthetic guided by ultrasound but really my Mum’s liver was so badly affected that he could go in anywhere and they would be sure to get cells. He wasn’t talking about a liver with suspicious spots, he was talking about a liver that was riddled with cancer.
The biopsy was done on Monday, the tests came late on Wednesday. A particularly bad sign, I thought, was the Anglican minister who attended twice on Wednesday the second time just before we got the news. The news was bad. The diagnosis was confirmed. My Mum has cancer of the liver and the cells indicated that the primary was either in her bowel, stomach or pancreas. The registrar was very patient with us explaining what this all meant, but making no bones about the fact that it was terminal. He wouldn’t be drawn on the question of time. What he did want us to consider was whether we went looking for the primary? It seemed at this point that we had a choice – she could have a gastroscopy/colonoscopy or not. But there were good reasons to go ahead with these scopes: 1. It would indicate whether the primary was likely to cause problems in the future, ie cause a blockage or obstruction, or bleeding, and 2. if it was bowel cancer it would be important for my brother and I to know because there is some hereditary risk. We decided to go ahead. My Mum was prep’d for the colonoscopy on Thursday ready to have it done on Friday.
I asked her consultant to refer us to an Oncologist and we saw him Thursday night. He was a young Chinese Australian. He told us that yes my Mum’s condition is terminal, but that depending on where the primary cancer was there could be some treatment options. My brother and I perked up at this. If the primary was in her pancreas there really wouldn’t be any options, and the end would be quick and nasty, three months at the most. If the primary was in her bowel there could be some gentle chemo options. Basically if we didn’t do anything with a primary in her bowel she would have 3-6 months, with some gentle chemo it might extend her life a little – in someone younger than her it could buy them 2-2.5 years, but not for an 80 year old. He was hesitant to put a figure on it, I was left with some hope but not a lot. I think my brother decided she’d be around for another 18 months – 2 years. He thought this was somewhat funny as we’d decided that on discharge Mum would move in with me and my long suffering partner Guy, and that suddenly this was looking like a more extended stay!
Anyway, the colonoscopy and gastroscopy found a large tumour in her bowel. We’re to see the oncologist this Thursday to find out what this means, what treatment there might be.
Saturday we went to my Mum’s and got things for her to move into our house, her bed, some occasional tables, her tv, and brought them back to set up a room for her. I took her Spode dinner set that I’ve always wanted but suddenly don’t want anymore. My brother took some things. It seems astounding that we accumulate things, possessions and property, through our life that finally mean nothing. Will the salvos come and get the furniture, or will they think it’s too old and worn out for them? Should we put it out for the hard rubbish collection in April? How will that feel, putting out things that my Mum and Dad accumulated, worked hard for, on the nature strip. This is all very unknown territory for me, and very very difficult at times.
Sunday my Mum was discharged from hospital. I brought her home to her room that we’d set up. It looks very nice, we have a house that we’ve been renovating. The floors are polished, the walls are white, we have plantation shutters on the window, it looks very pleasant. I forgot to mention that in the midst of all this my parents in law arrived for a visit from the UK. They brought Mum beautiful pink roses and hydrangeas. There’s a sofa in her room so she can sit in peace and quiet.
A couple of extra points:
- my father has dementia, he has had this for about 6-7 years and has been in a nursing home for maybe 2-3 years. He is in the final stages of dementia and no longer knows who I am. My Mum has been going into the nursing home 4-5 days per week to make sure that he eats lunch because he’s inclined not to want to eat, so for the last 10 days no one has done this, apart from my brother and I when I visited for my Dad’s 82nd birthday on the day the consultant gave us his provisional diagnosis.
- we don’t have any family in Australia, my father is Polish and when repatriated from the farm he was a slave labourer on in Germany during the war went straight to England. He met and married my Mum there in 1962 and they emigrated to Australia in 1963. I have taken some time off work to look after Mum.
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