I intend to focus on some of the seriously unthinking things people have said to me since the beginning of this. Since I had another ripper occur just the other day, i thought I better get it down before I forget - Chemo brain" is real, and I will forget so here 'tis.
Last week I had occasion to pick up a significant quantity of drugs from the pharmacy in the hospital I attend weekly for treatment. Since I have no hair, wear a bandanna, and hobble about on crutches, not to mention the type of drugs I was collecting, I think most people would have no trouble picking me as a cancer patient! Further since amongst these drugs there were 12 boxes of methadone, a trained pharmacist should, have no trouble surmising that my condition was also terminal. APPARENTLY NOT - since as she was toting up the cost she asked me how long I had been sick for? When I replied 4 years she said "Goodness it does drag on doesn't it" to which I was thankfully quick enough to pick my jaw up off the floor in time to respond "I bloody hope so" by which time the transaction was over, I left quickly, but with an unkind picture in my head of her going into the back room, and banging her head repeatedly into a door frame, screaming nooooooooooooooooooooooooo.
Ya gotta laugh!
Tuesday, May 27, 2008
Sunday, May 25, 2008
For this post I'm going to cheat a little, I few months ago I wrote a very small intro as to how a "fun with cancer" type book/essay whatever might sound. I'm going to whack that in below and then see if I can't continue to write in that vein as I progress -
Some potential names, although I think they are all bloody lame:
"Breast Cancer for Beginners"
"Breast cancer for the non navel gazers"
"Breast cancer – between the lines"
"When boobs go bad"
A few days after my diagnosis, Louise rang and said
“Just thought I should ring and say Oh Fuck” and so began my journey. My journey, are you kidding? My roller coaster ride with the grim reaper riding shotgun is more like it!
But this isn’t so much about me, but about what I have figured out through the highs and lows of modern breast cancer treatment, and by this I mean treatment in every sense of the word. Treatment by doctors sure, and also treatment by friends, family, partners, psychologists, complementary therapists, nurses, volunteers, taxi drivers, small children and total strangers.
If you have recently been diagnosed with breast cancer you are still in shock, expect this to last in its totally frantic stage for 2 weeks to a month. (You may feel like taking up smoking) In fact if you are still in that stage then you certainly aren’t reading this, because you have forgotten how to read. That will come back, but you will only be able to read little bits at a time, and then only the most simplistic of material. In fact you will be spending so much time in doctor’s waiting rooms that you will become an expert on Brittany Spears children, and Angelina Jolie’s tats. Don’t say that isn’t a HUGE plus for this whole cancer caper. How many t's in Brittany ?? I'm sure it should be two, which means it's probably one! I don't think her mother has ever been caught being intelligent!
But back to the main game, if you are still figuring out how you are going to fit this whole treatment business into your already jam packed schedule, stop it at once.
You have cancer, life as you know it just stopped, it may come back, but it may not, that is the honest reality. Don’t put yourself under more stress trying to hold onto what was. That was your BC (before cancer) life, no one can give you any idea what your after cancer life may be like, but it won’t be the same as your BC life that is certain.
Some potential names, although I think they are all bloody lame:
"Breast Cancer for Beginners"
"Breast cancer for the non navel gazers"
"Breast cancer – between the lines"
"When boobs go bad"
A few days after my diagnosis, Louise rang and said
“Just thought I should ring and say Oh Fuck” and so began my journey. My journey, are you kidding? My roller coaster ride with the grim reaper riding shotgun is more like it!
But this isn’t so much about me, but about what I have figured out through the highs and lows of modern breast cancer treatment, and by this I mean treatment in every sense of the word. Treatment by doctors sure, and also treatment by friends, family, partners, psychologists, complementary therapists, nurses, volunteers, taxi drivers, small children and total strangers.
If you have recently been diagnosed with breast cancer you are still in shock, expect this to last in its totally frantic stage for 2 weeks to a month. (You may feel like taking up smoking) In fact if you are still in that stage then you certainly aren’t reading this, because you have forgotten how to read. That will come back, but you will only be able to read little bits at a time, and then only the most simplistic of material. In fact you will be spending so much time in doctor’s waiting rooms that you will become an expert on Brittany Spears children, and Angelina Jolie’s tats. Don’t say that isn’t a HUGE plus for this whole cancer caper. How many t's in Brittany ?? I'm sure it should be two, which means it's probably one! I don't think her mother has ever been caught being intelligent!
But back to the main game, if you are still figuring out how you are going to fit this whole treatment business into your already jam packed schedule, stop it at once.
You have cancer, life as you know it just stopped, it may come back, but it may not, that is the honest reality. Don’t put yourself under more stress trying to hold onto what was. That was your BC (before cancer) life, no one can give you any idea what your after cancer life may be like, but it won’t be the same as your BC life that is certain.
So here is something of a start, some of the areas that I want to talk about in the future include:
- Tips from other people
Wanting to introduce you to others with cancer
Wigs
Eyebrows and eyelashes (snowflakes wont stay on my nose and eyelashes)
Hot flushes
Constipation and diarrhoea
Asking for help
Statistics and lies
You are not your doctor’s new best friend
The nurses do this stuff all day every day
Nurses will usually give it to you straight – so be prepared
Have someone with you – you wont remember squat
Are you going to die
When are you going to die
They really don’t know that much
They are just following a formula
They only answer exactly what you have asked, never go further
They wont speculate
They will tell you, you are going to die if you develop secondaries
If you develop secondaries you probably are going to die – they don’t know when
Anything new you read in the paper about breast cancer your doctor has probably known about for 5 years at least
People sending you clippings from the paper about new cancer treatments – for prostate cancer etc
Oncologists tend to be upbeat – i.e. they encourage you to believe all will be well, until they have proof positive that it won’t. Because they are human they put off giving you bad news until it can’t be avoided.
They don’t give you lots of tests when you have secondaries, because they know its coming back and they want you to have as long as possible between tests to relax. If you absolutely have to know the moment it starts up again then demand more frequent tests – lots of stuff is about not wanting to worry you – but that should be your decision
Would a Dr treat their own family members differently – probably yes
Its probably better to have a grim doctor because at least when they smile you know its for real
Complimentary therapies
You simply can’t do them all – lets make a list shall we???
Luck
Thursday, May 22, 2008
A Quick thought
I have just had a visit from the phlebotomist (the professional blood takers of the medical world) as I need my 'bloods done' because I'm having a transfusion on Sunday in the hope that I may feel a bit more energised. Anyway I digress, she asked me a question in the course of our general chit chat undertaken, as she undertook to find a vein. It was a question I have been asked many times before and usually by people who are, like her, relative strangers, but often somehow linked to the medical world. After asking me a bit about my condition, and having realised that I was in the 'going to cark it' basket she said;
"and how does your family feel about this" I ask you ? What sort of a question is this? What is one supposed to say "oh well they have all hated me for years, and I think they are quite chuffed actually, and naturally the kids are thrilled to be getting their hands on a bit of inheritance money much earlier than they had anticipated" or perhaps " well its completely fucked up their lives, my mother is on the verge of a nervous breakdown, my father has been rendered speechless, my partner is talking about coming with me and my children have failed every exam for the past four years, and are in constant therapy"Hells bells Why ask me how they feel? As if I don't feel shitty enough, lets rub it in that I'm making my entire family feel shitty as well. So there we have it, tip 1. -
Don't ask a terminally ill person how their family feels about it!
Tip 1.1 And obviously, don't ask them how they feel about it! How do you think they feel you goose!
"and how does your family feel about this" I ask you ? What sort of a question is this? What is one supposed to say "oh well they have all hated me for years, and I think they are quite chuffed actually, and naturally the kids are thrilled to be getting their hands on a bit of inheritance money much earlier than they had anticipated" or perhaps " well its completely fucked up their lives, my mother is on the verge of a nervous breakdown, my father has been rendered speechless, my partner is talking about coming with me and my children have failed every exam for the past four years, and are in constant therapy"Hells bells Why ask me how they feel? As if I don't feel shitty enough, lets rub it in that I'm making my entire family feel shitty as well. So there we have it, tip 1. -
Don't ask a terminally ill person how their family feels about it!
Tip 1.1 And obviously, don't ask them how they feel about it! How do you think they feel you goose!
Wednesday, May 21, 2008
A Little Background
Before I really get going on this I should use this arena to bring together some other pieces I have written at various times over the past 4 years. In general they are letters sent to all my friends to keep them up to date with what is going on. I was born and raised in Perth W.A. spent time in London on a couple of occasions, and then moved to Sydney N.S.W. for what turned out to be the bulk of my adult life. I now live in Brisbane because we had to move somewhere cheaper and we also wanted to locate somewhere that was reasonable for our combined 6 kids living on the eastern seaboard of the country. So far most of them seem to be gravitating towards us. So I have friends spread around the country with a smattering overseas - the 2 emails below were written when I had just moved to Queensland i.e. I moved up in December 2005 after living the previous 12 months in Levick St. Cremorne that my Mum and Dad had moved into because I had been sick on chemo and my daughter Polly was doing her HSC that year. The year before I had been having my first lot of chemo, the radiation and the surgery, my girlfriend had dropped her whole life to be with me through that - and help with the kids. Fortunately I hadn't be as unwell as I was for the first half of 2005 when they belted me with more chemo and herceptin. All I remember doing was just lying in bed in a sort of semi catatonic state, I was worried I wouldn't get to the end of the year and to my daughter's 18th! Amazing really. Guess what I found out ? Doctors really do say "Get your affairs in order" that's when you know that you are well and truly fucked!
Anyway here we are Dec 9Th 2005 embarking on my new and golden life with Ali as long as it lasts, not very long it seems - below:
January 2006
SOOOOOOOOOOOOO CANCER SUCKS Firstly, I'm ok for now, although I have got very little use of my legs,as some of you might know I have been having some problems for a few months - but tended to blame ongoing neuropathy - and was busy moving/ Christmasing etc - progression was really quite slow until just before Christmas. Met my new oncologist (Dr Geoff Beadle for any of you guys with connections) - just before Christmas - I had had a great CT scan on liver and abdomen just before leaving Sydney so thought I was in the clear and meeting him was hopefully just introductory as a new patient. He asked me why I was limping I blamed the recent first Pilates lesson - but told him my legs had been becoming numb for some time - He was clearly perplexed by myrange of fairly non specific symptoms and asked if I had ever had a brain MRI - I knew at once that this should have occurred to me also - (the herceptin I'm on holds the cancer at bay in the rest of my body - but due to the bodies natural "brain barrier thingie" it can't protect Brain and spine) However he said that symptomatic brain cancer progresses extremely quickly (a matter of days apparently) and mine clearly, was not behaving in thi way. He said he would see me for a scheduled visit on the 10th of Jan - and we would have the scan done regardless. Off I went Christmas just about upon us - much to do! Legs getting only incrementally worse so buoyed up with brain cancer knowledge we blundered on - Had lovely Chrissie - all the family and kids etc - But had kids staying etc til the 31st - had, the only two nights we have had alone in the house without some kids on the 1st and 2nd of Jan - but now pain was getting very bad - had two shit nights and Ali had me ring the doctor to bring forward the scan - By now symptoms much more specific -urinary problems - pain in different places - worse at night. Typically got myself on the net and did my own research - I figured out quickly that my problems seemed to be more likely to be spinal cord - and it had to be a tumour of some type! By this time I couldn't get off the bed at night - and was having big problems even getting to my feet after going to the loo - was well and truly using the cane all the time - but still driving - I should not have been - very irresponsible of me. Doctor's receptionist had arranged brain MRI for next morning (Wednesday) but I told her I think I needed the spine done as well - doctor agreed and being a longer procedure - couldn't have it done 'til Thursday at 5.30pm - Spent over 1 1/2 hours in the MRI tunnel - stock still - head clamped in place amidst deafening noise of the machine. They stuck some head phones on me to drone out the noise but even Jimmy Barnes wasn't up to the task!! very spooky place, thank God I'm not claustrophobic - it must be impossible for some people to manage! Results due Friday pm - I should call after 2 - I wasn't too bad, I reall knew what I had I was just a matter of what/where/how much and what might be able to be done. I have to say at that stage I was thinking he may come back and say it’s just everywhere brain/spine etc and your totally fucked! He finally rang me about 4pm - by that stage I had had 2 very large glasses of white wine - when I told him that, he suggested I have 2 more and to meet him in hospital within he next 2 hours - He would meet me there with a neurosurgeon and a radiation oncologist - holy crap was I that sick??. Dr Beadle explained that I did indeed have a spinal tumour - only the one, and nothing in the brain - (I was relieved at this) Problem was my tumour was apparently most unusually encased wholly within the spinal column. reckons he has only had one other patient with it - being unusual with cancer is also not a good thing - you want to be bog standard to have the best chance! He was initially really concerned that my condition could get very bad very fast - already losing bladder and now only just walking - He wanted to start treatment immediately. Poor Ali - Friday night getting me to hospital - drama - Went to Wesley Private Hospital - so far all the services - help etc have been fantastic - function of a smaller market I guess - feeling much more confident about my treatment here it has to be said. In hospital saw Oncologist he did look grim it has to be said - I think I may well have been a bit pissed at this stage - Ali took over- Gave me general run down about my condition - without frightening me too much - said he did feel only thing would be radiation. Neurosurgeon and radiation oncologist all trooped in to see me and all agreed - Even as a lay person I can see that you can't open a spinal column and start cutting out bits of tumour - he said he would on cause more damage, and chemo doesn't work (brain barrier thingie again) . He did say that he didn't think this tumour in itself will be fatal - guess he expects more - anyway I was quite encouraged by this - haven't got time to cark it at the moment - - They started my radiation treatment on the Saturday morning - my new radiation oncologist and two technicians had to come in on Saturday and Sunday in their weekend clobber to open the whole department just to treat me - Either fantastic service or I was in deep shit!! Haven't decided which yet! Time will tell. Spent 4 days in hospital - really needed to be there - Finally hit me that my muscles weren't playing up - I was indeed paralyzed - which I might add is not the uniform painless sensation we like to think it is. Tumour is at V12 and L1 seems very involved as right leg is far worse than left. I have had a bit of improvement with the bladder function I suspect from the drugs they have given me to reduce the oedema around the tumour and take some of the pressure off the nerves in my spine - was having great trouble peeing and this was bloody uncomfortable - but whilst probably not perfect now, I seem to be in control again and that's a relief. Legs the same, but no worse I don't think - doctor has admitted since, that on Friday evening he though> we might have a spiraling disaster on our hands - hence the rush to get me stable. They let me go home on Wednesday afternoon after radiation and my regular 3 weekly herceptin infusion that was due. Spent the day inundated with help/health professionals - Physio - advice - new crutches to help me get up, training, and apparently its off to hydrotherapy soon. Saw a Buddhist pastoral care dude - sweet man - I think Ali wants to get them involved for both of us. Also a fabulous counsellor - who said I can just call her direct for all the services and she will organise everything. Got home 3.00pm Wednesday from hospital (Forgot to mention - redoubtable Miss Polly has driven up and has been great ferrying me around and looking after me when Ali has to work - she is the most capable 18 year old you could ever meet! am so proud of her) By 5.00pm had occupational therapist at the house assessing what we needed - and we needed lots - bars/rails elevated bed/ new wheelchair/ raised toilet seat - completely modified shower - Its a bloody learning curve it has to be said!! But everything has now been put in place as of this morning - and I am sitting here in my new infinitely more comfortable brand new $1000.00 wheelchair - appropriately its purple - and I can probably have my first proper shower since I came home from hospital. Some bloke has turned up from the government this morning about in home assistance etc - really is lots of help available. Will have to organise cleaners etc otherwise Ali will kill herself trying to do everything. My radiation oncologist seems confident that I should get some improvement in mobility - and obviously thinks progression has ceased for the time being. I know you are all thinking of me - I feel pretty good all things considered - I do get pretty bad pain at night - but the panadeine fortes usually do the trick - Its just learning to let others help you all the time is difficult - and I won't say I haven't had a couple of tantrums - And I'm bloody well having a fare slug of wine in the evenings - indeed fell out of wheelchair pissed on Thursday night, forgot to lock off the wheels before I tried to pick something up - took about 3 people to get me back in - tres embarrassing. Overall this is not good news in terms of longevity but am still determined to eak it out as long as I can. Ali is a saint working, nursing, dressing me she is probably under the most strain of anyone - And in all this we are having the house painted!!!!!!!!!Ali's birthday on Sunday 22nd - trying to figure out something nice - if you want to help me then the best thing you could do would be support her - I know you all will Life goes on my darlings - I know this goes on forever but I thought I could get it all down in one and bring everyone up to speed - not something we like to recount over and over again. Thinking of you all - Big loves to kids /husbands families Sorry to be stuffing up yet another new year L
Email 2
Hi all,Firstly thanks for all your fab emails and good wishes - I think I must be very lucky to have so many great friends - I'm a little behind on replying to all individually, but I will get to it!Friday morning here, Tom is visiting, but has gone off to the gym (typically) so thought I might write a brief update!Illness is a bloody busy business - seems to be no end of things that have to be attended to - certainly, I have understandably, developed a sense of urgency about getting things organised. Poor Ali, last weekend told her we had to get a new car so off we went and bought one - New Peugeot 307 wagon -excellent car for us, should be delivered in about 2 weeks. Its an automatic so at least my automotively challenged children (they both only drive automatics) will be able drive when they come up to visit. Have discussed things with Tom and Polly - I want them to continue with their studies and their lives as normally as possible - I really think its best they remain in Sydney, at least for a while - Tom only has six months to go to complete his undergrad degree, and Polly has just enrolled in Medical Science at Sydney Uni. Getting to Brisbane from Sydney is much like catching a bus these days, and I hope they will just jump on the plane whenever they feel like coming to say hi!! The last thing I want is for them to think they have to come and look at me all day!!OK had let this go over the weekend - Monday morning here - Had great weekend - but still adjusting to my level of disability - Taking someone out in a wheelchair is a major undertaking - plus I'm pretty bloody heavy to push all over the place -I can walk a bit - especially with the use of crutches - can also teeter about abit on my own if I hang onto walls/furniture etc - But I get tired quite quickly, this may just being the residual effects of the radiation treatment! Hope so!Still spend most of the time sitting in wheelchair - and getting a bloody sore bum! by the evening I feel like I have been sitting on concrete for about 4 days, and just have to get horizontal - this is typically symptomatic of spinal tumours - so have been making pathetic jokes around 'pain in the arse' theme.Have finished my 10 radiation treatments, oncologist has told me that it will be up to two weeks after treatment that we will see the extent of any improvement in function - that 2 weeks is up on Thursday - certainly my right leg has improved - in hospital I literally couldn't raise it off the bed - but can lift it about 2-3 feet now - and am walking much more steadily with the crutches - some is probably technique, but certainly there has been a slight improvement in the legs. Bladder and other organs behaving better - but have cut down on nearly every medication - I think it’s the drugs that cause the most probs. Generally the pain is less - I have just been taking regular panadol to deal with it. So it seems that the function that I have now may be as good as it gets - Drs said that function would return only in areas where tumour hadn't actually damaged the nerves - once damaged that’s it, apparently. So it would seem that I have a fair bit of permanent damage - but I think it could be worse - the fact that I can actually get to my feet makes all the difference in the world to my independence.According to my very sweet radiation oncologist I can expect this lot of radiation to hold my tumour for 6 to 12 months - they have kept some extra radiation doses up their sleeve, so they can hit it again - but only once more! However she said that most likely more tumours will pop up either in brain or spine within that time frame - so I'm to have regular MRIs and they will zap them with radiation as they appear! Bit like putting out spot fires it seems to me! Doctors incredibly pissed off that this tumour has got to the stage it has - I think its safe to say that oncologists take pride in keeping patients as well as possible before they die!!!!!!!! It’s odd really.s'pose the most difficult thing to deal with is the fact that you just don't know what might happen next - I still have liver mets, although they are under control via 'herceptin' but realistically this could stop working at any time - and the liver tumours will come roaring back.Overall my mood is pretty good all things considered - I've had a couple of years to comes to grips with all this stuff - and I realise I simply don't have time to be depressed - have to be happy so I can enjoy my life - so that is the objective. Very easy to be happy in our lovely new house with Ali, and I have become an online shopping demon - since that’s the one thing I can't do (get down to the shops) Ok enough of me ~! I'm bored so you must be doubly so!Oh one interesting thing - my radiation oncologist has asked me to come and give a talk to the hospital radiation staff on motivation/teamwork or something like that - very flattering really - not totally useless yet!!Once again my dear friends could you please forward this onto any mutual friends - my address book still not updated completely.Am feeling generally normal from the waist up - still eating, drinking and having fun -love to all as ever Lisa
Anyway here we are Dec 9Th 2005 embarking on my new and golden life with Ali as long as it lasts, not very long it seems - below:
January 2006
SOOOOOOOOOOOOO CANCER SUCKS Firstly, I'm ok for now, although I have got very little use of my legs,as some of you might know I have been having some problems for a few months - but tended to blame ongoing neuropathy - and was busy moving/ Christmasing etc - progression was really quite slow until just before Christmas. Met my new oncologist (Dr Geoff Beadle for any of you guys with connections) - just before Christmas - I had had a great CT scan on liver and abdomen just before leaving Sydney so thought I was in the clear and meeting him was hopefully just introductory as a new patient. He asked me why I was limping I blamed the recent first Pilates lesson - but told him my legs had been becoming numb for some time - He was clearly perplexed by myrange of fairly non specific symptoms and asked if I had ever had a brain MRI - I knew at once that this should have occurred to me also - (the herceptin I'm on holds the cancer at bay in the rest of my body - but due to the bodies natural "brain barrier thingie" it can't protect Brain and spine) However he said that symptomatic brain cancer progresses extremely quickly (a matter of days apparently) and mine clearly, was not behaving in thi way. He said he would see me for a scheduled visit on the 10th of Jan - and we would have the scan done regardless. Off I went Christmas just about upon us - much to do! Legs getting only incrementally worse so buoyed up with brain cancer knowledge we blundered on - Had lovely Chrissie - all the family and kids etc - But had kids staying etc til the 31st - had, the only two nights we have had alone in the house without some kids on the 1st and 2nd of Jan - but now pain was getting very bad - had two shit nights and Ali had me ring the doctor to bring forward the scan - By now symptoms much more specific -urinary problems - pain in different places - worse at night. Typically got myself on the net and did my own research - I figured out quickly that my problems seemed to be more likely to be spinal cord - and it had to be a tumour of some type! By this time I couldn't get off the bed at night - and was having big problems even getting to my feet after going to the loo - was well and truly using the cane all the time - but still driving - I should not have been - very irresponsible of me. Doctor's receptionist had arranged brain MRI for next morning (Wednesday) but I told her I think I needed the spine done as well - doctor agreed and being a longer procedure - couldn't have it done 'til Thursday at 5.30pm - Spent over 1 1/2 hours in the MRI tunnel - stock still - head clamped in place amidst deafening noise of the machine. They stuck some head phones on me to drone out the noise but even Jimmy Barnes wasn't up to the task!! very spooky place, thank God I'm not claustrophobic - it must be impossible for some people to manage! Results due Friday pm - I should call after 2 - I wasn't too bad, I reall knew what I had I was just a matter of what/where/how much and what might be able to be done. I have to say at that stage I was thinking he may come back and say it’s just everywhere brain/spine etc and your totally fucked! He finally rang me about 4pm - by that stage I had had 2 very large glasses of white wine - when I told him that, he suggested I have 2 more and to meet him in hospital within he next 2 hours - He would meet me there with a neurosurgeon and a radiation oncologist - holy crap was I that sick??. Dr Beadle explained that I did indeed have a spinal tumour - only the one, and nothing in the brain - (I was relieved at this) Problem was my tumour was apparently most unusually encased wholly within the spinal column. reckons he has only had one other patient with it - being unusual with cancer is also not a good thing - you want to be bog standard to have the best chance! He was initially really concerned that my condition could get very bad very fast - already losing bladder and now only just walking - He wanted to start treatment immediately. Poor Ali - Friday night getting me to hospital - drama - Went to Wesley Private Hospital - so far all the services - help etc have been fantastic - function of a smaller market I guess - feeling much more confident about my treatment here it has to be said. In hospital saw Oncologist he did look grim it has to be said - I think I may well have been a bit pissed at this stage - Ali took over- Gave me general run down about my condition - without frightening me too much - said he did feel only thing would be radiation. Neurosurgeon and radiation oncologist all trooped in to see me and all agreed - Even as a lay person I can see that you can't open a spinal column and start cutting out bits of tumour - he said he would on cause more damage, and chemo doesn't work (brain barrier thingie again) . He did say that he didn't think this tumour in itself will be fatal - guess he expects more - anyway I was quite encouraged by this - haven't got time to cark it at the moment - - They started my radiation treatment on the Saturday morning - my new radiation oncologist and two technicians had to come in on Saturday and Sunday in their weekend clobber to open the whole department just to treat me - Either fantastic service or I was in deep shit!! Haven't decided which yet! Time will tell. Spent 4 days in hospital - really needed to be there - Finally hit me that my muscles weren't playing up - I was indeed paralyzed - which I might add is not the uniform painless sensation we like to think it is. Tumour is at V12 and L1 seems very involved as right leg is far worse than left. I have had a bit of improvement with the bladder function I suspect from the drugs they have given me to reduce the oedema around the tumour and take some of the pressure off the nerves in my spine - was having great trouble peeing and this was bloody uncomfortable - but whilst probably not perfect now, I seem to be in control again and that's a relief. Legs the same, but no worse I don't think - doctor has admitted since, that on Friday evening he though> we might have a spiraling disaster on our hands - hence the rush to get me stable. They let me go home on Wednesday afternoon after radiation and my regular 3 weekly herceptin infusion that was due. Spent the day inundated with help/health professionals - Physio - advice - new crutches to help me get up, training, and apparently its off to hydrotherapy soon. Saw a Buddhist pastoral care dude - sweet man - I think Ali wants to get them involved for both of us. Also a fabulous counsellor - who said I can just call her direct for all the services and she will organise everything. Got home 3.00pm Wednesday from hospital (Forgot to mention - redoubtable Miss Polly has driven up and has been great ferrying me around and looking after me when Ali has to work - she is the most capable 18 year old you could ever meet! am so proud of her) By 5.00pm had occupational therapist at the house assessing what we needed - and we needed lots - bars/rails elevated bed/ new wheelchair/ raised toilet seat - completely modified shower - Its a bloody learning curve it has to be said!! But everything has now been put in place as of this morning - and I am sitting here in my new infinitely more comfortable brand new $1000.00 wheelchair - appropriately its purple - and I can probably have my first proper shower since I came home from hospital. Some bloke has turned up from the government this morning about in home assistance etc - really is lots of help available. Will have to organise cleaners etc otherwise Ali will kill herself trying to do everything. My radiation oncologist seems confident that I should get some improvement in mobility - and obviously thinks progression has ceased for the time being. I know you are all thinking of me - I feel pretty good all things considered - I do get pretty bad pain at night - but the panadeine fortes usually do the trick - Its just learning to let others help you all the time is difficult - and I won't say I haven't had a couple of tantrums - And I'm bloody well having a fare slug of wine in the evenings - indeed fell out of wheelchair pissed on Thursday night, forgot to lock off the wheels before I tried to pick something up - took about 3 people to get me back in - tres embarrassing. Overall this is not good news in terms of longevity but am still determined to eak it out as long as I can. Ali is a saint working, nursing, dressing me she is probably under the most strain of anyone - And in all this we are having the house painted!!!!!!!!!Ali's birthday on Sunday 22nd - trying to figure out something nice - if you want to help me then the best thing you could do would be support her - I know you all will Life goes on my darlings - I know this goes on forever but I thought I could get it all down in one and bring everyone up to speed - not something we like to recount over and over again. Thinking of you all - Big loves to kids /husbands families Sorry to be stuffing up yet another new year L
Email 2
Hi all,Firstly thanks for all your fab emails and good wishes - I think I must be very lucky to have so many great friends - I'm a little behind on replying to all individually, but I will get to it!Friday morning here, Tom is visiting, but has gone off to the gym (typically) so thought I might write a brief update!Illness is a bloody busy business - seems to be no end of things that have to be attended to - certainly, I have understandably, developed a sense of urgency about getting things organised. Poor Ali, last weekend told her we had to get a new car so off we went and bought one - New Peugeot 307 wagon -excellent car for us, should be delivered in about 2 weeks. Its an automatic so at least my automotively challenged children (they both only drive automatics) will be able drive when they come up to visit. Have discussed things with Tom and Polly - I want them to continue with their studies and their lives as normally as possible - I really think its best they remain in Sydney, at least for a while - Tom only has six months to go to complete his undergrad degree, and Polly has just enrolled in Medical Science at Sydney Uni. Getting to Brisbane from Sydney is much like catching a bus these days, and I hope they will just jump on the plane whenever they feel like coming to say hi!! The last thing I want is for them to think they have to come and look at me all day!!OK had let this go over the weekend - Monday morning here - Had great weekend - but still adjusting to my level of disability - Taking someone out in a wheelchair is a major undertaking - plus I'm pretty bloody heavy to push all over the place -I can walk a bit - especially with the use of crutches - can also teeter about abit on my own if I hang onto walls/furniture etc - But I get tired quite quickly, this may just being the residual effects of the radiation treatment! Hope so!Still spend most of the time sitting in wheelchair - and getting a bloody sore bum! by the evening I feel like I have been sitting on concrete for about 4 days, and just have to get horizontal - this is typically symptomatic of spinal tumours - so have been making pathetic jokes around 'pain in the arse' theme.Have finished my 10 radiation treatments, oncologist has told me that it will be up to two weeks after treatment that we will see the extent of any improvement in function - that 2 weeks is up on Thursday - certainly my right leg has improved - in hospital I literally couldn't raise it off the bed - but can lift it about 2-3 feet now - and am walking much more steadily with the crutches - some is probably technique, but certainly there has been a slight improvement in the legs. Bladder and other organs behaving better - but have cut down on nearly every medication - I think it’s the drugs that cause the most probs. Generally the pain is less - I have just been taking regular panadol to deal with it. So it seems that the function that I have now may be as good as it gets - Drs said that function would return only in areas where tumour hadn't actually damaged the nerves - once damaged that’s it, apparently. So it would seem that I have a fair bit of permanent damage - but I think it could be worse - the fact that I can actually get to my feet makes all the difference in the world to my independence.According to my very sweet radiation oncologist I can expect this lot of radiation to hold my tumour for 6 to 12 months - they have kept some extra radiation doses up their sleeve, so they can hit it again - but only once more! However she said that most likely more tumours will pop up either in brain or spine within that time frame - so I'm to have regular MRIs and they will zap them with radiation as they appear! Bit like putting out spot fires it seems to me! Doctors incredibly pissed off that this tumour has got to the stage it has - I think its safe to say that oncologists take pride in keeping patients as well as possible before they die!!!!!!!! It’s odd really.s'pose the most difficult thing to deal with is the fact that you just don't know what might happen next - I still have liver mets, although they are under control via 'herceptin' but realistically this could stop working at any time - and the liver tumours will come roaring back.Overall my mood is pretty good all things considered - I've had a couple of years to comes to grips with all this stuff - and I realise I simply don't have time to be depressed - have to be happy so I can enjoy my life - so that is the objective. Very easy to be happy in our lovely new house with Ali, and I have become an online shopping demon - since that’s the one thing I can't do (get down to the shops) Ok enough of me ~! I'm bored so you must be doubly so!Oh one interesting thing - my radiation oncologist has asked me to come and give a talk to the hospital radiation staff on motivation/teamwork or something like that - very flattering really - not totally useless yet!!Once again my dear friends could you please forward this onto any mutual friends - my address book still not updated completely.Am feeling generally normal from the waist up - still eating, drinking and having fun -love to all as ever Lisa
beginings of Blog
Well this is just a getting started effort - My idea being to write some hopefully useful and amusing words to those of us that live with this disease, those that live around it, and those that look the other way when they clock that the person in the bandanna is not a hairy biker!
Also I want it to be a resource for my friends to keep tabs on me and my health. I can't help imagining myself with an acquaintance who has a terminal disease - I would shit myself if I hadn't called for six months because I would be concerned that they might have become very sick in the interim, or worse pegged out! What a shitty friend I would feel, so best not to call at all, and just wait for the jungle drums to bring news. With this they can check before calling, just to be on the safe side. Watdayathink ? Ok idea??
Now I'm going to practice with pictures
It doesn't work, ok yes it does, thats enough for one night I'm feeling a bit too tired to really let rip on what can indeed be at times pretty damn funny. But more of that another time - 'til later
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