Update on Leigh

14 years 2 months ago #29527 by Cynthia
Replied by Cynthia on topic Update on Leigh
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:
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 Society

Please Log in or Create an account to join the conversation.

14 years 2 months ago #29516 by GKLINE
Replied by GKLINE on topic Update on Leigh
Leigh, 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
=
New Man! [/size]

Please Log in or Create an account to join the conversation.

14 years 2 months ago #29514 by Leigh
Replied by Leigh on topic Update on Leigh
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 & Cisplatinum

Please Log in or Create an account to join the conversation.

14 years 2 months ago #29510 by sara.anne
Replied by sara.anne on topic Update on Leigh
So 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 Moderator

Please Log in or Create an account to join the conversation.

14 years 2 months ago #29508 by blb
Replied by blb on topic Update on Leigh
Leigh,
You have been in my thoughts and prayers - glad to see that you are back posting and feeling well. Take it easy!
Bobbi

Please Log in or Create an account to join the conversation.

14 years 2 months ago #29506 by Webs
Replied by Webs on topic Update on Leigh
Leigh,

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

Please Log in or Create an account to join the conversation.

Moderators: Cynthiaeddieksara.anne