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Update on Leigh
Leigh asked me to keep the forum updated on his progress. This from his partner John.
Dear all,
Leigh’s operation went very well without any problems/complications.
He is in IC but het is awake and okay.We do have to wait for results now which can take up to 10 days
pat
Cynthia replied 15 years, 1 month ago 14 Members · 26 Replies -
26 Replies
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Pat asked me to post this update from Leigh,
Hello everyone,
I am so happy to of made it home for the Christmas holidays with my family and have had a relaxing time being pampered.
It is time for me to take a back seat for a while and recover from the operation which for me is really hard to do. During the preparation of the Christmas dinner I was eager to get involved but was banished from the kitchen.
Doctor’s orders are to have two complete weeks of rest and then slowly build up my walking and activities.
It has been confirmed that the tumour was a metastasis from the original bladder cancer from two years ago. The neurologist surgeon was very happy that they were able to remove the entire tumour. The plan of action now is to have preventative radiotherapy to zap any microscopic cancer cells that might be hanging around.
Starting tomorrow they will make a mask for me that will be necessary when they start full brain radiotherapy on the 8th of January. Treatment will be 10-15min sessions for 10 days in total with a few days rest in between.
Possible side effects from the treatment can be hair loss, tiredness, itchy scalp and nausea.
I have been banned from driving again for 6 weeks which is when I have an MRI scan and neurology appointment to check the progress of the radiotherapy.
I am so very thankful that the tumour was operable and that I have no further metastasis in my body which is very positive. My oncologist has said that because of this they are still aiming for curative rather than palliative treatment.
This will be my last update and for those that are interested to follow my journey through treatment I welcome you to follow my blog. I started a blog two years ago when I was diagnosed with bladder cancer which helped me greatly to express my feelings.
The initial diagnosis is the start of the blog and I will be starting to blog once more shortly a kind of part two to the journey. The link to my blog is:
http://bladdercancerjourney.blogspot.com/I would like to thank you all from my heart for all your kind words of support, messages, texts, cards and flowers I really appreciated them all. I would like to wish you all peace, love and good health in 2010.
Kind Regards
Leigh
Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer SocietyLeigh, it is good to hear from you and I send on my best wishes for recovery and continued clear tissue reports. You are an inspriation to all of us. My best kharma feelings go out to you. My wife says “if you really pray about it, it will come true”
George
Light a man a fire and he is warm for an evening.
Light a man ON fire and he’s warm forever.08/08/08…RC neo bladder
09/09/09…New Hip
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New Man! [/size]Hello everyone,
Mike I know exactly what you mean…I was hoping for a new primary…sounds weird too right!!
Thanks so much everyone for your well wishes…
Just to add…my main concern before surgery was my neo…I pre – warned my Oncologist, Neuro surgeons, and Nurses all about my neo and that with a catheter they would need to check outflow and flush and remove mucus if necessary.
When I was wheeled down to the OR just before they put me to sleep I sat up and got the attention of the staff that were present and said that I had a neo bladder and whoever would be responsible for the catheter to check for outflow and flush and remove mucus if necessary, I assumed they understood me.
My surgery was five hours and the last phase I became very hypertensive and thankfully someone in the team checked the catheter and realized I had very little outflow of urine in the bag. They flushed and the dam gushed open and one and half litres of urine came out….not sure how much my poor old neo could have held up for before exploding……
I remember the surgical team that passed me on to IC telling the IC team about it when they handed me over.
I felt I had done enough to explain before hand but constant reminding is necessary.
Maybe it would be a good idea to get the stoma nurse involved to communicate with OR staff when any surgery is planned…
xxxleigh
Leigh, 39
Dx July 2007
TURBT July 2007
RC/Neobladder ,Studer Pouch, September 2007
Erasmus Centrum Rotterdam
TNM Classification: pT4 N2 Mo
4 cycles aduvant chemo Gemzar & CisplatinumSo glad that you are home and that the news is as good as it is!! Let’s hope that the New Year is a great one for you.
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum ModeratorLeigh,
You have been in my thoughts and prayers – glad to see that you are back posting and feeling well. Take it easy!
BobbiLeigh,
I am so glad you are home and enjoyed the holidays. I hope this new phase of treatment goes smoothly for you. Wishing strength and healing your way.
Char
GuestDecember 31, 2009 at 11:32 pmWelcome home Leigh……so happy to hear you have such a great team of surgeons on your side and i’m betting with your positive energy you will indeed beat this thing into submission.
Much love coming your way!!
PatLeigh,
So glad you are home and doing well. Hope you have a very good New Year and have lots of positive things to report. Don’t overdo things,
Vi
Dx 10/5 Non Invasive PapillaryLeigh,
Glad to have you back and posting again!
So sorry to hear that it was mets and not something separate. That sounds wierd to say but I think you know what I mean.
I hope that the radiotherapy works and nothing else shows up!
Rest and be well!
Mike
Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results….distant mets
2/2014 ct result…spread to liver, kidneys, and lymph system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.Hello everyone,
I am soooooo happy to be home and finding my feet again.
Thank you Pat so very much for posting the updates I really appreciate it….
Thank you dear friends for your lovely messages of support and kind words…they have meant a lot to me.
Getting home for Christmas was the best gift of all being around my family and friends..I feel very grateful for that.
The operation was five hours and the two neuro surgeons that took turns to get out the tumour are happy with what they removed.
They could see during surgery that it was a metastasis because of its form and this was later confirmed by pathology.
My first night in intensive care went really well and once my blood pressure was stable they moved me to high care.
My first night in high care was very intense as they wake you every two hours for observation tests and you just grab sleep in between.
On th second morning in neuro high care they wanted me to try to sit up and danggle my legs but my head was not having any of it and I became dizzy and woozzy and threw up breakfast.
I promised myself later that day to play with the electric controls raising my head rest higher each time to get over that woozzy feeling.
The next morning the same nurse said come on Leigh lets try again after your breakfast and I said ok….fine but first help get me out of bed to the chair and table and then I will have breakfast….I was too scared I would be dizzy again and throw up…it worked and I had the best breakfast ever….watching the snow flakes fall at the window ledge….
On the Monday they shipped me off to the regular neuro ward and at last I could sleep the night through with no observations during the night.
They released me Wednesday afternoon and boy was I happy to get home..
The care I received at the UZ GENT in Belgium was top notch and I apppreciated the amazing care I received from the doctors and nurses and all the other staff members keeping the ball rolling.
The instructions from the nuro surgeon are to rest for two weeks and get pampered and then slowly build up my walking and then at six weeks I can get back to my normal activities.
My oncologist said in most cases with a metastasis other areas are effected and this would then deemed to be terminal.
This is not the case with me and are still aiming at curative intent care.
My Ct scans of my body and bone scans were clear so the plan of action now is to have preventative full brain radiotherapy for 10 days. 5 days on two days off 5 days on…with each session being 10-15 min.
On the 4th Jan they will make my mask and on the 8th Jan they will start treatment. Side effects could be itchy scalp, hair loss, tiredness, no motivation, forgetfulness.
At the beginning of Feb they will do a new MRI….this will also be my check up with the neuro surgeon.
My regular CT scans have come back from 6 monthly checks to 3 montly scans to keep a close eye on me. To be honest I am happy they have…
My balance and coordination problems will improve with time along with my double vision…feels like I have drunk a bottle of gin or something :silly: :lol:
So I am back at home :cheer: enjoying the holidays getting ready to see the new year in with family and friends and boy do I feel blessed.
I hope that the holidays have been special for you all and I want to wish you all a very peaceful, healthy and happy new year!!
Chat again in 2010
Peace to all….
xxxLeigh
Leigh, 39
Dx July 2007
TURBT July 2007
RC/Neobladder ,Studer Pouch, September 2007
Erasmus Centrum Rotterdam
TNM Classification: pT4 N2 Mo
4 cycles aduvant chemo Gemzar & CisplatinumDear Leigh , I think of how you encouraged me when I first was on here and the times that have been hard since, you always had a kind word. You are in my prayers and I hope it won’t be long before you are able to go for walks and get to feel the sun shine on you face to lift your spirits. God bless , Rocky
Get through this Leigh. My best wishes for a speeedy recovery and can’t wait to hear from you. But I’ll wait till you are ready.
George
Light a man a fire and he is warm for an evening.
Light a man ON fire and he’s warm forever.08/08/08…RC neo bladder
09/09/09…New Hip
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New Man! [/size]GuestDecember 29, 2009 at 7:28 pmLeigh!
So glad to hear you are home and on the mend. I did wave at you as we passed through Schipol Airport this morning on our way back home from Bahrain.
((Hugs))
Betsy Mae
Thank you for keeping us updated and it will be great when he is feeling well enough to get online.
Leigh,
I hope you have a great Christmas and am so thankful you can be home for that.Speedy recovery and Merry Christmas,
Vi
Dx 10/5 Non Invasive PapillarySign In to reply.
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