January 2010
Hi Cindy,
Welcome to the forum.
I'm a survivor of Merkel Cell Carcinoma. It will be eight years in February 2010, since I was diagnosed with MCC.
Cindy, if you could give me more information on your MCC & what area you live. I will do my best to help you in anyway. I do correspond with MCC sufferers & their carers.
I'm an Advocate for The Cancer Council.
Merkel
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January 2010
Hi Andrea,
We all need to unload, that's what this site is all about. Support from others who have been there.
I'm sorry for loss of your son, & what your going through with your daughter. Were here to support you and your daughter.
Take care, Merkel
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December 2009
Hi Mrs Elton,
I lost my husband to cancer last August. I had all necessary paper work in order. See a solicitor to organise all the necessary paper work you need, ready for your husband to sign & carry it with you. When he's able to discuss matters with you, have him sign the papers with medical staff as witnesses to his signature.
As far as being an organ donor. I don't think cancer patience are accepted?
Since losing my husband in August I haven't been on this site for a while. I would like to wish everyone a Merry & Safe Christmas. Merkel
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Hi All,
Is there anyone out there who has Multiple Myeloma or can help me with information. I need some information for a friend of mine.
Merkel
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September 2009
Hi Wazzy,
I wrote to you privately before. My husband had a neobladder reconstructed four & a half years ago. A friend of his had the same procedure two years earlier & is ten years older then Wazza. It's nearly seven years for Wazza friend and he's in great shape, no recurrence. Wazza was 57 when he had his operation, unfortunately Wazza developed another tumour four years later and passed away in August.
Wazza's neobladder was constructed from his small bowel. Surgeons took 42cm of his small bowel to design his new bladder. Which worked well. I will give you some information on Wazza's journey.
As the neobladder is made of small bowel material it will produce mucus. The mucus is what can block your neobladder. If this ever happens go straight to a hospital and be catheterised to release the pressure. To break down the mucus, drink Cystitis Relief for urinary infections. You can buy it over the counter at any chemist, it's in powder form, mix it with water and drink it twice a day to keep your bladder clear of mucus. Forget the cranberry juice. Wazza never had any infections.
To void properly Wazza would go to the toilet & sit down, then to push the mucus through he would bear down. Away from home he would stand at the urinal and void, when we returned home he would sit on the toilet to void the mucus properly, he would do this two or three times a day.
When we first arrived home from hospital after the neobladder operation. At night Wazza would set the alarm every two hours to get up to void, eventually he only had to set the alarm every four hours to get up and void. He would watch what he drank at night, didn't drink much after 7:30pm to keep his fluids down at night. The reason you have to set the alarm to void is, you won't have the same sense of feeling that you want to go to the toilet you have now, you have to gauge your fluid intake & void around every two hours or so, depending on your fluid intake.
If your ever ill at anytime & have to stay in bed, this is where your neobladder often blocks, because your not voiding your mucus. This has happened to Wazza several times. You really have to educate yourself on your neobladder. There's not many people around with neobladders & the medical staff don't have the experience yet. I saved Wazza's bacon many times, informing medical staff on what the problem was and what to do. Most medical staff haven't dealt with a neobladder before. I've had medical staff asking me what a neobladder was.
Wazza was very lucky to be sent to a Urologist who has done many neobladder operations and a very experience surgeon. Wazza'a pathology report after his operation was excellent. His tumour was insitu, there were no nodes involved. He couldn't have asked for a better pathology report. Unfortunitely, four years later he ended up with another tumour that was very aggressive.
After your operation, any questions no problems. There's not enough information on first hand experience.
Take care, Merkel
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September 2009
Hi, To all our wonderful supporters.
Thank you all for your words of compassion at my darkest hour. It was wonderful and comforting to know were all there for one another.
We nursed Wazza at home. I found that very comforting to be able to take care of him to the end. The last few days of Wazza's life our son sat in a chair next to his dad's bed holding his hand. By that time we could only give Wazza a teaspoon of liquid to keep his mouth moist.The afternoon before he died our son said "Dad we have to have our last beer together". Our son picked up Wazza's teaspoon and put some beer on it, gave it to his dad & said, cheers dad. Wazza could just lift his hand a few inches off his bed to shake our son's hand. The next morning at 10:55am I was holding Wazza's hand as he was slipping away, he was looking out the window towards the park. I said, if you can hear me turn your eyes and look at me, it took a bit of time for him to turn his eyes towards me. While Wazza was looking at me & holding his hand he past on to the other side to a much better place.
Wazza's requiem mass was beautiful. Wazza was an excellent left handed guitarist and bass player. One of the songs at the mass our son chose was "While My Guitar Gently Weeps" by George Harrison. I would like to share my sons eulogy he wrote for his dad's requiem mass with you, as were all family and share a common bond.
Son's Eulogy
In 40 years of knowing my dad, I only once saw him have a look of absolute terror. We were talking about dying. But this was years ago, before dad knew he had cancer. Dad was talking about his wife, my mum, when she had her cancer scare. I remember his face lost all colour and the lines on his face became tight and he said "she could die".
In that moment I saw the incredible love my dad had for mum, the fear and pain he felt, and the look of complete devotion to her. I thought to myself what a wonderful man.
Just a few short weeks ago we had left the hospital for the last time and all hope was gone. Driving home I tried to make light of the situation and suggested he should have practised the harp more. We started to cry and dad grabbed my hand and said "there is nothing more I want to do, nothing more I want to see, I'm ready to go. I'm OK. I just wish I didn't have to cause my family so much pain". I expected to see the look of terror that I had seen once before but instead he was calm and only concerned for his family. What a wonderful man.
Mum and dad first laid eyes on each other when she was 7 and dad was 8. Dad was in a suit stuffing cake into his pockets and apparently not making a good impression. 10 years later they met again and got married.
That was 43 years ago. 41 of of those as husband and wife.
Dad would like me to say this. Mum, thank you for the love and care you gave dad when he needed it most. It was beautiful and sad at the same time and I could see what a difference it was making. I don't think dad has ever loved you deeper. You made his last days the best anyone could hope for.
My Dad, a wonderful man.
Thank you all for letting me share this with you, Merkel
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August 2009
Wazza lost his battle with cancer today Saturday 22nd August, at 10.55am. His in God's hands.
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August 2009
Hi to all our wonderful supporters.
Wazza is losing his battle with bladder cancer. His having Palliative Care now. The palliative care nurses & doctors have been wonderful, without them I couldn't keep Wazz at home. We've been informed Wazz only has a few weeks. He's told us he's ready to go. I've attached a poem that says it all.
GOD'S GARDEN
God looked around His garden
And found an empty place.
He then looked down upon the earth
And saw your tired face.
He put his arms around you
And lifted you to rest.
God's garden must be beautiful
He always takes the best
He knew that you were suffering
He knew that you would never
Get well on earth again.
He saw the road was getting rough
And the hills were hard to climb.
He knew that you were not afraid
For His faith you did find.
He allowed you time to say goodbye
To give your family peace of mind.
So he closed your weary eyelids
And whispered 'Peace be thine'.
It broke our hearts to lose you
But you didn't go alone.
For part of us went with you
The day God called you home.
Merkel
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August 2009
Hi Everyone,
Last Wednesday Wazza had his first CT scan since starting chemotherapy. He's had four cycles of chemo, Cisplatin & Gemcitabine. His CT report has been very disappointing.
There has been further tumour increase in the pelvis area. There's now more lymph nodes involved. He has multiple low attenuation lesions present throughout the liver, multiple metastases. The largest of these measures 4.2 x 6.3 x 7.5cm. The liver metastases has developed within five months & that's with chemo.
We see his oncologist on Monday?
If you haven't read Wazza's Blog, he has bladder cancer. I had Merkel Cell Carcinoma.
Wazza & I want to thank all of you for your thoughts & prayers.
Take care, Merkel & Wazza
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