Yesterday John drove me to Gent for my follow up with the Radiotherapy doctor. It has now been nearly a month since my treatment ended and everything seems to be going to plan.
Weaning off the steroids is the aim now and next week begins the tapering again….it will be ok this time!!
As the radiotherapy continues to work for up to three months I may be a baldy for some time…although I do feel bristles of hair growing back…..
So I have now been handed over to the Oncology department in the hands of Prof, Rottey my specialist in Urinary and Head and Neck cancers so I am in really great hands.
My next hospital trip will be in early March for a CT scan of my thorax and abdominal area and the results of these tests a few days later. This of course is to check that the original bladder cancer has not taken up home anywhere else.
These appointments are getting harder and harder as basically I am waiting for those words Leigh don’t worry the scans are clear. The other option is not an option and will only mean we will do our best for you to extend and delay the inevitable as much as possible.
Psychologically it is a strain and I do have moments that I am scared and those moments are occurring more often. Being at home alone all day has a part to play in my mental health at the moment and I crave other sights and sounds.
The treatment path has been difficult however I am feeling stronger these days so feel motivated from that to strum up positive thoughts and energy.
Getting away with John and friends next week will be wonderful and have been so looking forward to it for ages. I have been scared that I may spoil proceedings with my health and have to back out….but no I will be ok….I will have enough energy…and I will have a wonderful time enjoying the warm sunshine sitting in the shade or swinging in a hammock sipping long cool drinks and checking out the eye candy.
Saturday 20 February 2010
Wednesday 17 February 2010
Shrove Tuesday
Time to hit the indoor cycle today to shed off the calories from Shrove Tuesday!!
I made some lovely jam and pure chocolate filled pancakes for desert last night and they were delicious.
It has been some time that I have flipped some pancakes and everyone of them turned out perfect…I have not lost my touch.
The heating man paid a visit also yesterday for a maintenance check-up, the pressure bar was nearly touching 0 and the boiler has been gurgling and banging for a few days. After a clean out with a vacuum cleaner and a good drink of water it sprung into action and warmed up the house….so now I am warm and cosy again…
Winter is winter this year and night times are well under 0, the cats just have no intention of going out to play. They cry to be let out…I open the door…they take once sniff of the cold air and come running back in. They are all very happy the radiators are up and running once more.
Ok time to do some chores…poop scooping …how lovely!!
I made some lovely jam and pure chocolate filled pancakes for desert last night and they were delicious.
It has been some time that I have flipped some pancakes and everyone of them turned out perfect…I have not lost my touch.
The heating man paid a visit also yesterday for a maintenance check-up, the pressure bar was nearly touching 0 and the boiler has been gurgling and banging for a few days. After a clean out with a vacuum cleaner and a good drink of water it sprung into action and warmed up the house….so now I am warm and cosy again…
Winter is winter this year and night times are well under 0, the cats just have no intention of going out to play. They cry to be let out…I open the door…they take once sniff of the cold air and come running back in. They are all very happy the radiators are up and running once more.
Ok time to do some chores…poop scooping …how lovely!!
Tuesday 16 February 2010
Hanging south
Weaning off the steroids has not gone to plan and a week of hobbling around and constant dizzy spells have forced me to give in and step up the dosage once more.
I reduced the level to 20 mg and thought if I just bite my way through my body would have adapted. Unfortunately this has not been the case and I am back to 40 mg a day.
My walking has improved and my brain feels calm once more…the feeling of it rolling around in my head at any slight movement was not a pleasant experience.
I did get warned by the Radiologist that this may happen and a step back maybe necessary…obviously the therapy is still active in my brain creating swelling.
Of course this has pissed me off a great deal and the puffy face and eyes are here to stay a little while longer.
The steroids really are my stabilizers and allow me to function and I could not walk with ought them.
I have been drenched in pessimism for my future this past week and it was no great place to be. Trying to find the bright side and rekindle positive thoughts has not come easy to me recently.
On top of this I have had a few episodes of high sugar levels and have now been given an insulin pen for when the levels are above 12. My doctor has warned me that in 1% of patients this can become permanent…whoopee, another ailment to add to the list.
Friday I have my Radiology appointment and will find out the deal with the steroids…if and when I can start to wean off again.
I am going to cross over to my normally optimistic self if only to boost my psychological well-being.
So as you can read I have had a blue week in the doldrums although I am heading to the middle east for some winter sun and relaxation next week. This will be a very well desrved break for John and I ..especially John as he needs a good rest. With lots of warm sunshine and snorkelling, searching for Nemo amongst the coral reafs.
I will be layed out on a sun bed or hammock sipping a cocktail or two and taking a dip in the pool each day to try to tighten out my flabby body….amazing what 4 months not going to the gym can do….everything and I mean everything is hanging south…
So my total sunblock for my head and neck is already packed…and I am counting the days to take off……
I reduced the level to 20 mg and thought if I just bite my way through my body would have adapted. Unfortunately this has not been the case and I am back to 40 mg a day.
My walking has improved and my brain feels calm once more…the feeling of it rolling around in my head at any slight movement was not a pleasant experience.
I did get warned by the Radiologist that this may happen and a step back maybe necessary…obviously the therapy is still active in my brain creating swelling.
Of course this has pissed me off a great deal and the puffy face and eyes are here to stay a little while longer.
The steroids really are my stabilizers and allow me to function and I could not walk with ought them.
I have been drenched in pessimism for my future this past week and it was no great place to be. Trying to find the bright side and rekindle positive thoughts has not come easy to me recently.
On top of this I have had a few episodes of high sugar levels and have now been given an insulin pen for when the levels are above 12. My doctor has warned me that in 1% of patients this can become permanent…whoopee, another ailment to add to the list.
Friday I have my Radiology appointment and will find out the deal with the steroids…if and when I can start to wean off again.
I am going to cross over to my normally optimistic self if only to boost my psychological well-being.
So as you can read I have had a blue week in the doldrums although I am heading to the middle east for some winter sun and relaxation next week. This will be a very well desrved break for John and I ..especially John as he needs a good rest. With lots of warm sunshine and snorkelling, searching for Nemo amongst the coral reafs.
I will be layed out on a sun bed or hammock sipping a cocktail or two and taking a dip in the pool each day to try to tighten out my flabby body….amazing what 4 months not going to the gym can do….everything and I mean everything is hanging south…
So my total sunblock for my head and neck is already packed…and I am counting the days to take off……
Monday 8 February 2010
Trying to run before I can walk
Since my last appointment with my Neurologist my vision and coordination have put me off from typing.
My vision becomes double after around ten minutes and a small email or message takes me that amount of time. My fingers hit the wrong keys and I am constantly correcting mistakes…
Walking is also becoming a problem and I find I have to grab the nearest support for balance.
The weaning off of the steroids is in full flow now and I am down from 64mg Medrol to 20mg and boy do I feel the difference. The steroids have really helped me function over the last few months.
I really hope that the fluid in my brain absorbs quickly and all balance and coordination return to normal ASAP.
My Neurologist tried to explain to me that I had to learn to walk before I could run again…Leigh being Leigh thought that everything would just return to normal far sooner and that I could reintegrate back to work.
The radiotherapy continues to work even though the treatment has finished and will continue for the next few months. Luckily for me the only visible signs of the treatment were hair loss and dry skin on my scalp and for head. Physically I have to have rest between exertion and a few naps now and again.
The advice I have to follow is to remain home for a further three months until my next MRI scan. In that time I am banned from driving because of a risk of epilepsy due to the fluid in pockets of the brain.
I can however get back to the gym which I am happy about and can have gentle walks on the tread mill or ride a bike and lift the lightest weights. Build up my strength gradually and to listen to my body and not push things.
Reading just is not an option at the moment and makes me feel sick after a while so I am becoming hooked to daytime soaps…..
Have to try desperately not to fall into a dip though and stimulate myself in other ways….
My vision becomes double after around ten minutes and a small email or message takes me that amount of time. My fingers hit the wrong keys and I am constantly correcting mistakes…
Walking is also becoming a problem and I find I have to grab the nearest support for balance.
The weaning off of the steroids is in full flow now and I am down from 64mg Medrol to 20mg and boy do I feel the difference. The steroids have really helped me function over the last few months.
I really hope that the fluid in my brain absorbs quickly and all balance and coordination return to normal ASAP.
My Neurologist tried to explain to me that I had to learn to walk before I could run again…Leigh being Leigh thought that everything would just return to normal far sooner and that I could reintegrate back to work.
The radiotherapy continues to work even though the treatment has finished and will continue for the next few months. Luckily for me the only visible signs of the treatment were hair loss and dry skin on my scalp and for head. Physically I have to have rest between exertion and a few naps now and again.
The advice I have to follow is to remain home for a further three months until my next MRI scan. In that time I am banned from driving because of a risk of epilepsy due to the fluid in pockets of the brain.
I can however get back to the gym which I am happy about and can have gentle walks on the tread mill or ride a bike and lift the lightest weights. Build up my strength gradually and to listen to my body and not push things.
Reading just is not an option at the moment and makes me feel sick after a while so I am becoming hooked to daytime soaps…..
Have to try desperately not to fall into a dip though and stimulate myself in other ways….
Thursday 4 February 2010
MRI scans before and after
Top image is the after op and the image below before op.
The removal of the tumour has created a space which is filled with fluid and will over 6-12 mths absorb naturally in the body.
At the back of the neck at the entry point I also have a fluid build up....this is due to the removal of a piece of scull and the healing process from gaining access to the Cerebellum which they had to split.
The removal of the tumour has created a space which is filled with fluid and will over 6-12 mths absorb naturally in the body.
At the back of the neck at the entry point I also have a fluid build up....this is due to the removal of a piece of scull and the healing process from gaining access to the Cerebellum which they had to split.
Wednesday 3 February 2010
Great News!!
Great news!!
My MRI scan was all clear and the operation a success.
More to come later…..now time to celebrate and crack open a bottle!!
xxxleigh
My MRI scan was all clear and the operation a success.
More to come later…..now time to celebrate and crack open a bottle!!
xxxleigh
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