Preparing to get my house in order this pass week has been a great strain on my partner and family and friends. (me too of course but kept that secret)
They have all rallied around to get things rolling for me.
Getting home care registered and set up when the time comes so that just a phone call is required. They will be available 24/7 when necessary which is a great relief.
The funeral directors have paid a visit and me being a total control freak at the momment have all that set up ready to role. Of course my family found it devastating to talk about as our European culture hides everything and anything to do with dying. Lots of tears and sadness...which in a way was a cleansing for us all. Designing my own passing announcement cards and thank you letters wws pretty weird but satisfying at the same time.
I guess I have just blocked the emotions .....should really be more sensitive to my family's emotions more....just got to get it organized though so that they have nothing to do later.
So desperately trying to make it a celebration of my life instead of a somber affair....how do you do that right when loved ones are taken away.....hmmmm
Finances have been a nightmare....writing letter after letter...insurances...pensions....changing names on documents...Getting letters on original documents from doctors to prove that I am now a terminal cancer patient etc....well I am pleased to announce it is all done and dusted....a week of help and support and now I can relax....so too can my family and close friends.....I know they are happy about that....no more pressure for them....well you know hat I mean..no added work from me...
One great thing came out of this last weeks trauma of planning is that most of them have now set up there own funeral insurances and packages........
Ok...I had my rambling head on....could not sleep....xanax calming tablet kicking in now....03:16 in the morning here in Holland...time to get some nods in noddy land.....big day in the morning.....setting up a second opinion ...
Love and peace to all...xxxleigh
Sunday 28 March 2010
Metrotrexate
Metrotrexate seems to be a possibily that can be given orally, intravenously or injected directly into the spine. Seems to have a delaying effect on the cancer growth.
Seems that I am clutching at anything passing me by....but hey ....now I feel well enough and have energy to research a little. If I can get a few months or longer out of this with little side effects it really is worth it to me for the time with my family and friends.
I had my port placed in on Saturday and although it is still giving me a bit of gip when I move my arm or stretch it is ready and willling to go when needed.
I had it done under local injection and the procedure took just 30 mins....The initial pain of having the numbing injections under my left shoulder pain passes quickly and the procedure zoomed away.
Just had to have an xray after wards to check that no puncture had occured on the lung which I am sure I would have known about....but got the all clear. After a sandwich and cup of coffee I was sent home packing.
My home care is just to shower as normal and change the dressing each day for three days and then to air it out to the world.
I have no real pain ...just discomfort when in bed and rolling over to turn sides....
Paracetomol is more than enough to take off the edge....it feels much bettter already. Just feels like a small mobile inserted into my left chest.....please dont call me....not sure how to answer it yet...did not get instructions....lol
xxxleigh
Seems that I am clutching at anything passing me by....but hey ....now I feel well enough and have energy to research a little. If I can get a few months or longer out of this with little side effects it really is worth it to me for the time with my family and friends.
I had my port placed in on Saturday and although it is still giving me a bit of gip when I move my arm or stretch it is ready and willling to go when needed.
I had it done under local injection and the procedure took just 30 mins....The initial pain of having the numbing injections under my left shoulder pain passes quickly and the procedure zoomed away.
Just had to have an xray after wards to check that no puncture had occured on the lung which I am sure I would have known about....but got the all clear. After a sandwich and cup of coffee I was sent home packing.
My home care is just to shower as normal and change the dressing each day for three days and then to air it out to the world.
I have no real pain ...just discomfort when in bed and rolling over to turn sides....
Paracetomol is more than enough to take off the edge....it feels much bettter already. Just feels like a small mobile inserted into my left chest.....please dont call me....not sure how to answer it yet...did not get instructions....lol
xxxleigh
SPINAL FLUID METS
I am looking for options that can help with:
SPINAL FLUID METASTASES
If there are cancer cells in the spinal fluid and there is no brain tumor....(removed just before Christmas),treatment will usually consist of a total dose of 2400 cGy,Radiotheraphy (which I can no longer have as full dose given in Jan 2010.) [Intrathecal drug administration into the spinal fluid seems to be a possibility. An Ommaya reservoir or a ventricular access device may be used to delivery the drug into a ventricle. This is called intraventricular delivery. The drug then circulates from the ventricle throughout the spinal fluid.] chemotherapy. Just finding chemo's that can enter the protective membrane of the brain and fluid that have had some positive effect. And of course finding an Oncologist willling to do it.
xxx leigh
SPINAL FLUID METASTASES
If there are cancer cells in the spinal fluid and there is no brain tumor....(removed just before Christmas),treatment will usually consist of a total dose of 2400 cGy,Radiotheraphy (which I can no longer have as full dose given in Jan 2010.) [Intrathecal drug administration into the spinal fluid seems to be a possibility. An Ommaya reservoir or a ventricular access device may be used to delivery the drug into a ventricle. This is called intraventricular delivery. The drug then circulates from the ventricle throughout the spinal fluid.] chemotherapy. Just finding chemo's that can enter the protective membrane of the brain and fluid that have had some positive effect. And of course finding an Oncologist willling to do it.
xxx leigh
http://bladdercancersupport.org
Thank you everyone for your kind words of love and support...they truley mean the world to me through these trying times.
I am amazed at the family of friends we have at this site. Recently I have recieved many personal emails from members and guests from this forum. It is wonderful the team of love and support we have at this bladder cancer network.
I understood that we have members and guests that take more of a reading and listening approach to this site....but I am truely inspired by the love and support recently recieved by these wonderful angels enveloping us with positive vibes and support from a small distance. And although you choose not to post but gain your valuable inspiration like many of us here.....I thank you.
We are not alone in our struggles and I thank you wonderful people caring for us with your presence in this cyber world of bladder cancer support.
Love, peace xxx leigh
I am amazed at the family of friends we have at this site. Recently I have recieved many personal emails from members and guests from this forum. It is wonderful the team of love and support we have at this bladder cancer network.
I understood that we have members and guests that take more of a reading and listening approach to this site....but I am truely inspired by the love and support recently recieved by these wonderful angels enveloping us with positive vibes and support from a small distance. And although you choose not to post but gain your valuable inspiration like many of us here.....I thank you.
We are not alone in our struggles and I thank you wonderful people caring for us with your presence in this cyber world of bladder cancer support.
Love, peace xxx leigh
Wednesday 24 March 2010
Busy few days
John and I have had a really busy week so far sorting finances and organizing services for the funeral etc.
As I am sure you can imagine it has been a very trying few days. Luckily my Sister and Auntie came over for a few days to help us. So much to organize and could have not done all those things alone. Thank you so much guys....xxxxx
Monday morning we had the home help nurse, setting up everything for us for when the time comes, so that is now in place and we just need to give them a call. They will be available 24/7 when necessary.
Monday evening the funeral director paid a visit and now all is set up for the that day too.....weird evening though...choosing a coffin , flowers and type of service etc....It is now organized and another thing off my mind thankfully.
Yesterday I had an appointment with the local surgeon at my local hospital De Honte Terneuzen to have a porto cat installed in my chest on Friday afternoon. This will help the nurses in the future if I cannot hold down my medicine and they can just inject directly into the box sitting under my chest. It is usually used for admin of chemo and taking blood etc.
I have chosen to go for a local anaesthethic and the procedure is roughly 30 min and after a coule of hours I can go home.
Chat another time with more news when poss....
Oh so far my reasearch has uncovered that maybe a drug called Methotrexate could possibly help and slow down progression of the disease within the spinal fluid...
Anyone interested in doing reasearch please do any help appreciated......
xxxleigh
As I am sure you can imagine it has been a very trying few days. Luckily my Sister and Auntie came over for a few days to help us. So much to organize and could have not done all those things alone. Thank you so much guys....xxxxx
Monday morning we had the home help nurse, setting up everything for us for when the time comes, so that is now in place and we just need to give them a call. They will be available 24/7 when necessary.
Monday evening the funeral director paid a visit and now all is set up for the that day too.....weird evening though...choosing a coffin , flowers and type of service etc....It is now organized and another thing off my mind thankfully.
Yesterday I had an appointment with the local surgeon at my local hospital De Honte Terneuzen to have a porto cat installed in my chest on Friday afternoon. This will help the nurses in the future if I cannot hold down my medicine and they can just inject directly into the box sitting under my chest. It is usually used for admin of chemo and taking blood etc.
I have chosen to go for a local anaesthethic and the procedure is roughly 30 min and after a coule of hours I can go home.
Chat another time with more news when poss....
Oh so far my reasearch has uncovered that maybe a drug called Methotrexate could possibly help and slow down progression of the disease within the spinal fluid...
Anyone interested in doing reasearch please do any help appreciated......
xxxleigh
Update
Hello Everyone,
As some of you know already the last few weeks have been difficult with sickness for me. I have been in and out of the hospital with sickness and vomiting.
A few days ago I had a lumbar puncture and the results came through Friday just gone. The news was not what anyone would want to hear but hey it is my deal of the deck and I have to deal with it . Hopefully with all your love and support along the way.
My Oncologist has confirmed that they found bladder cancer cells in my brain fluid in my spine that circulate into the brain and lumbar area. This is a very rare condition and effects 1% of people.
What can they do? Well my Oncologist in Belgium has no options for me because the three options they have unfortunately have given no positive results on extension of life.
Option one:
Chemo...no positive results as cannot enter protective membrane in brain.
Option 2:
Radiotherapy, I have already had in January to no effect.
Option:3
Inject chemo directly into spine....no positive results for patients whom have had that option.
If the next two weeks go fine I may have months if not then it could be weeks before I die.
I am still full off energy and want to try for a second opinion to give myself the feeling I have done all I can to fight this to the end.
I know this will be a shock to many and nothing anyone can say can really help....I just have to find a place for it somehow myself.
Please do however keep your kind words of love and support coming I really appreciate them.
If you would like to be in touch, please send an email because it will be far better than getting lots of calls and text messages at home. John can print out the emails and I can read them. If I do have the energy I will reply...if I can and have the energy I will reply.
Could I ask you all to send me your home addresses so that when the end happens John can send a card to you.
For now I send you all my love and best wishes.....
Leigh Walker
Graafjansdijk b, 141
4554LC Westdorpe
Zeeland Holland
leigh@zeelandnet.nl
As some of you know already the last few weeks have been difficult with sickness for me. I have been in and out of the hospital with sickness and vomiting.
A few days ago I had a lumbar puncture and the results came through Friday just gone. The news was not what anyone would want to hear but hey it is my deal of the deck and I have to deal with it . Hopefully with all your love and support along the way.
My Oncologist has confirmed that they found bladder cancer cells in my brain fluid in my spine that circulate into the brain and lumbar area. This is a very rare condition and effects 1% of people.
What can they do? Well my Oncologist in Belgium has no options for me because the three options they have unfortunately have given no positive results on extension of life.
Option one:
Chemo...no positive results as cannot enter protective membrane in brain.
Option 2:
Radiotherapy, I have already had in January to no effect.
Option:3
Inject chemo directly into spine....no positive results for patients whom have had that option.
If the next two weeks go fine I may have months if not then it could be weeks before I die.
I am still full off energy and want to try for a second opinion to give myself the feeling I have done all I can to fight this to the end.
I know this will be a shock to many and nothing anyone can say can really help....I just have to find a place for it somehow myself.
Please do however keep your kind words of love and support coming I really appreciate them.
If you would like to be in touch, please send an email because it will be far better than getting lots of calls and text messages at home. John can print out the emails and I can read them. If I do have the energy I will reply...if I can and have the energy I will reply.
Could I ask you all to send me your home addresses so that when the end happens John can send a card to you.
For now I send you all my love and best wishes.....
Leigh Walker
Graafjansdijk b, 141
4554LC Westdorpe
Zeeland Holland
leigh@zeelandnet.nl
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