Medical Forum / Diseases and Disorders / Cancer / February 2005
Cicatricial Pemphigoid.
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Glen A. RITCHIE - 29 Jan 2005 05:05 GMT Hello all,
I recently lost my long-time friend, Bob - the man who was my partner for 14 years - to cicatricial pemphigoid, which is apparently a form of cancer of the mucous membranes.
According to his family, he first showed signs of this disease sometime around Christmas 2003.
Evidently, my friend didn't want to see very many people including his own family, because of the way the disease affected his appearance.
Why I say this, is because it was around that time that I felt as though he was pushing me away from him.
We were no longer in contact at all after his 71st birthday on February 23rd, 2004.
It wasn't until October 14th, 2004 that I actually learned that he'd passed away on July 28th, 2004.
Aside from being absolutely devastated over my loss, I also deeply regret not having stayed in touch with him, and as such, I never got the chance to visit him or take care of him when he was sick, let alone to even say goodbye.
My questions are:
(1) Is this form of cancer very rare?
(2) Would this particular type of cancer be caused or aggravated by lifestyle factors or traumatic events?
(3) Are certain groups more susceptible to this disease than others (e.g., age, ethnicity, gender)?
(4) Can a patient live relatively comfortably or independently up to a point, considering the condition?
(5) Is much pain involved, or is there any way to ease the suffering of a patient with this disease (e.g., drugs, surgery, therapy)?
(6) Do patients of this disease tend to experience more pain than any other type of cancer, especially in view of the fact that it is a disease which is so difficult to treat and respond to treatment?
(7) Can this disease induce secondary conditions, such as diabetes and high-blood pressure?
(8) What is the usual duration of this disease?
(9) Would a patient with this disease be informed at the outset that they are suffering from a terminal illness?
(10) Does this disease always end with the loss of the patient, or there cases of known survivors?
Sorry if these questions seem morbid, but I feel that I need to know that my friend received the best care available.
Either way, I would greatly appreciate receiving whatever information you may be able to provide.
Also, a referral to community resources which specialise in counselling family members and friends of people who've suffered from this disease could be helpful.
Although I've reached out to resources which I posted earlier, they were unable to address the particular issues I have surrounding this disease.
Thank you in advance for your support.
Sincerely,
Glen A. RITCHIE
 Signature Please remember to visit http://www.thehungersite.org to make your free daily donation of food to the needy. This programme is paid for by clicking on the advertisers listed, with the food being delivered by a highly reputable agency, the United Nations.
Glen A. RITCHIE - 23 Feb 2005 22:28 GMT Hello all,
Today - Wednesday, February 23rd, 2005 - would've been the 72nd birthday of my long-time friend, Bob.
I recently learned of the loss of my long-time friend, Bob, to cicatricial pemphigoid (a rare disease of the mucous membranes).
I can't honestly sum up in only a matter of words or phrases the kind of man Bob was, or the deeply personal friendship we had over the course of 14 years.
A lot of memories just seem to spontaneously spring up through an association with him, whether it be an expression or a joke, a song or a TV show, a cat or a plant (since he loved pets and gardening), a gift or a restaurant.
We used to talk about anything and everything, and go everywhere and nowhere, together.
I also know that he truly loved his family, and that he would drop everything to be with them or to do things for them.
And photographs of Bob's children and grandchildren, proudly displayed on the walls of his apartment, met the eyes of every visitor.
I'm surrounded by the good memories and good times we had together.
This would normally be comforting if it were not so distressing to realise that I will never be able to spend time with him again, as Bob is now gone from this life forever.
I deeply regret that I didn't maintain direct contact with him over the past year of his life.
This makes his loss all the more difficult to bear, because I didn't even know that he had become so seriously ill, and consequently I didn't get a chance to visit him or to take care of him like he did for me when I was sick, let alone to say goodbye.
As well, since no one in my family receives The Ottawa Citizen, no one saw his obituary and hence I wasn't informed that he had passed away.
It was my understanding that Bob was given eight months to live after Christmas 2003.
This would seem to fit, as his replies to my greeting cards for Christmas 2003 and for his birthday in February 2004 were terse, as though he was pushing me away.
I can completely understand his reasons for not wanting to let me know he was sick.
After all, he was the type of man who preferred to be needed than to be needy.
Additionally, he had developed diabetes and high-blood pressure, secondary to cicatricial pemphigoid, and it's possible the intense emotions of a final farewell might've affected his health adversely.
I learned of Bob's passing the night before I moved, October 14th, 2004.
I had been attempting to reach Bob by e-mail and phone, and I found it strange that my e-mails hadn't been received and that his line had been disconnected.
Although I still had some last-minute details to take care of the night before I moved, I decided to investigate the situation, as I knew it would plague my mind not knowing as much as knowing.
So, I decided to get into my car and drive out to Bob's place.
When I arrived there shortly after 21:00, I couldn't help but notice that the lights were all out in his basement apartment, and a tree that had been cut down was obstructing the path to his door.
This is when I knew something was terribly wrong, because Bob used to go to bed every night at 22:30 after watching "Seinfeld", and I couldn't see him letting a fallen tree lie in the way of his apartment for very long.
With a great sense of dread, I knocked on the door to his son Kevin and daughter-in-law April's place (Bob lived in the basement apartment of their triplex), as it didn't seem that the doorbell to Bob's apartment was connected.
Kevin informed me at the door that Bob had passed away on July 28th, 2004, and he invited me in because it was obvious that I was (and still am) in such a state of shock.
I didn't get any sleep whatsoever that night or much the following nights, as this was the worst news that I ever could have possibly received.
I've lost relatives and friends before, yet none of these losses has ever had the same devastating impact as this.
At the very least, I was hoping to share the good news of my move with Bob.
Now I'll never have that chance.
Bob survived many tragedies in his life, such as the loss of both his parents when he was barely into his teens, the loss of his nephew and family home in a fire, as well as the loss of his son David in a motorcycle accident; and like so many other things about him, I just took it for granted that somehow he'd always be around.
In this age of euthanasia, Bob was exceptionally courageous to continue facing each new day, despite the fact that he fully knew he would be suffering from a constellation of serious medical conditions, which would ultimately result in his mortality.
I can't even begin to imagine how extremely difficult it was for Kevin and April to see his health deteriorate before their very eyes, and to act as Nurses to Bob with his various afflictions for months, when most people their age would simply spare themselves the 'inconvenience' and put him in a hospice.
This action in itself shows what kind of man Bob was, and at the same time shows what kind of people his son and daughter-in-law are, ensuring that he received the personal care he needed by none other than the very ones he loved, right till the end.
No one else I've met before or since has been as generous, hospitable or loyal as Bob was.
He helped me in so many ways, and I learned so many things from him.
Needless to say, I miss him dearly; he was without a doubt the best friend I've ever had.
I would give anything in the world to have Bob back, alive and well; to see him, talk with him, and to be with him, even just to watch TV.
Above all else, I want to keep his memory alive, yet respect his wishes at the same time.
In this regard, his family has requested that friends honour Bob's memory through a fund dedicated in his name.
Although this fund is designed to further general cancer research, the donor can have their contribution designated specifically for cicatricial pemphigoid, since no work is presently being done on this disease in Ottawa (according to Dr. Michael MCBURNEY of the Ottawa Regional Cancer Centre).
This is a wonderful way to both honour a loved one and to help fight this terrible disease.
No one else should ever again have to suffer from this disease as Bob did.
Gifts can be made to:
Account # 82799 In Memoriam Programme Ottawa Regional Cancer Centre Foundation 503 Smyth Road Ottawa, Ontario K1H 1C4 Tel: (613) 247-3527 Fax: (613)247-3526
If you would like to make a donation online, please click here:
http://www.orccfoundation.ca
Even if you didn't know him, we all know someone in our life who has been affected by cancer.
The fund benefits everyone, either way.
Best regards.
Sincerely,
Glen A. RITCHIE
P.S.: Please contact me at glenaritchie at sympatico dot ca if you should require Bob's full name as well as his obituary.
Please remember to visit http://www.thehungersite.org to make your free daily donation of food to the needy. This programme is paid for by clicking on the advertisers listed, with the food being delivered by a highly reputable agency, the United Nations.
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