Just Another Day

[PJ2010]

Hi everyone,

Thought I might share my new adventure with you all.

As you all probably know every day with this illness is a struggle. Feeling so tired, the sore eyes, trouble hearing, continually cleaning out your nose, the cough and more.

I've been feeling so unwell and I've been extra alert thinking I may be having a relapse. A number of months ago I did one of those tests to check for blood in my stools. You know the one.

Well, after 3 months of misplaced referrals and the typical crap associated with the medical system I finally had my colonoscopy only to find out I now have bowel cancer.

When the doctor told me I was fine because inside I was thinking at least cancer is common and mostly understood and likely I won't go through the trauma and frustration associated with having a rare disease.

Compared to WG this will be a walk in the park (I hope). 😥 :unsure:

[mrtmeo]

Do u keep your vitamin D levels into the optimum range of 60-80 ng/mL?

[Pete]

Hoping they caught it early and that treatment is successful.

[PJ2010]

No idea re vitamin D.

[mrtmeo]

No idea re vitamin D.

Just ask your dr to do a 25 hydroxy D test to find your levels.
It can protect you from the cancer treatments.
It is our immune system modulating hormone.

[PJ2010]

Ok. Thanks for that. I will do that.

[mrtmeo]

Ok. Thanks for that. I will do that.

If you want to learn more about vitamin D, here are some orgs
Vitamin D | Vitamin D Council | Providing information on vitamin D (http://www.vitamindcouncil.org/)
GrassrootsHealth | Vitamin D Action - GrassrootsHealth | Vitamin D Action (http://www.grassrootshealth.net/)

[mishb]

PJ you were up very early this morning :unsure:

Thank goodness our Government makes us have those tests and thankfully/hopefully they have got to it early

I know exactly what you mean about being fine with the diagnosis - I was the same when they told me that I had lymphoma. At least they know how the treat it.

I guess you will have a few treatment options ahead of you to think about - best of wishes to you and your 'new adventure' :crying:

[Jaha]

I'm sorry that you now have to go thru this new bunch of tx. I hope that all goes well for you. I guess you are correct in saying that at least they will know how to treat this. It is really crazy that we at times would rather deal with the C word than all the unknown of those of us whom are not in remission and flaring every time we turn around. Wishing you all the best!

[PJ2010]

Thank you all so much. Yes Michelle, I'm always up throughout the nights. A hangover from Prednisolone unfortunately. I really don't mind actually because I've discovered a quiet and peaceful time when I can reflect and plan with no interruptions.

The one thing I have concerns about is I'm hoping the WG doesn't decide to flare whilst my body is dealing with this
'new adventure' as it could create interesting scenarios!!!

Michelle, I didn't know you have lymphoma. Has the WG interfered or caused any problems in your treatments?

[mishb]

All is good with me. Some others on here have encountered some cancer issues and treatments whilst also having WG. Hopefully they will come along and let you know a bit more.

For me, the lymphoma diagnosis was for 3 months and I saw oncology and haematology for 6 months.
It's treated with the same medication only in increased dosages - however, in my case it didn't end up being lymphoma at all.
Chronic inflammation had increased the white cells (lympocytes, leukocytes) within my blood and was mimicking lymphoma, when it was actually WG, or more specifically, my T cells that were attacking my cells, all along.

I guess you could say that WG interfered :unsure:

[Tom]

Hi everyone,

Thought I might share my new adventure with you all.

As you all probably know every day with this illness is a struggle. Feeling so tired, the sore eyes, trouble hearing, continually cleaning out your nose, the cough and more.

I've been feeling so unwell and I've been extra alert thinking I may be having a relapse. A number of months ago I did one of those tests to check for blood in my stools. You know the one.

Well, after 3 months of misplaced referrals and the typical crap associated with the medical system I finally had my colonoscopy only to find out I now have bowel cancer.

When the doctor told me I was fine because inside I was thinking at least cancer is common and mostly understood and likely I won't go through the trauma and frustration associated with having a rare disease.

Compared to WG this will be a walk in the park (I hope).  :unsure:Hello PJ, I've been there. You are starting the process with a good attitude. I know when they told me that I had to have surgery, I was still in recovery and rolled over to see who my wife was talking. That's when they broke the news to me, I just replied Oh! Rolled back over and rested some more. I never looked back, but I got the cancer and then the wegs. There was some concerns about my having cancer before the wegs. Im not sure about the relevance except you can only have some much chemo in a life time and so decisions had to be made when I was dx'd with Wegeners. Keep a good attitude! Mine was stage 4 and they didn't give me much of a chance. I think though that the wegs is the cancer getting its revenge! Im 8-1/2 years cancer free except for a basil cell on my face 34 years ago. :thumbup:

[PJ2010]

My god. Some of us are given a heavy workload in this life. I look around at all my friends and the majority of them have never known illness. I'm sure they find it difficult to understand how hard it is to cope living with disease. There are some I'm sure consider me a hypochondriac. Sometimes I think maybe I am. But then I really do have illness.
Its good to have friends that are well because it actually makes you want to be well so that you can enjoy their company. When I'm out with them riding my motorbike, the last thing I want to do is talk about illness.
Its funny because every now and then my health levels drop and it's like they have forgotten I'm really ill.

Im looking at my new problem and view it as an inconvenience and a disruption to my life. All I want to do is continue to work and go riding, wander around the shops, walk through beautiful parks and gardens, look after my home and just enjoy life and my friends. I will not if I can help it, lay down and let illness rule my life. :thumbup:

[Tom]

My god. Some of us are given a heavy workload in this life. I look around at all my friends and the majority of them have never known illness. I'm sure they find it difficult to understand how hard it is to cope living with disease. There are some I'm sure consider me a hypochondriac. Sometimes I think maybe I am. But then I really do have illness.
Its good to have friends that are well because it actually makes you want to be well so that you can enjoy their company. When I'm out with them riding my motorbike, the last thing I want to do is talk about illness.
Its funny because every now and then my health levels drop and it's like they have forgotten I'm really ill.

Im looking at my new problem and view it as an inconvenience and a disruption to my life. All I want to do is continue to work and go riding, wander around the shops, walk through beautiful parks and gardens, look after my home and just enjoy life and my friends. I will not if I can help it, lay down and let illness rule my life. :thumbup:I broke my back in 2000, I was dx'd with the cancer in 2006, in 2008 I was hit with a diabetes dx. Two months later I lost my sister to diabetes. Later in 08, I started having sinus trouble began and stayed with me for nearly 2 years and surgery in the sinus. Dx'd with COPD in early 2010. Two weeks later I had a bronchial scope to see why I was coughing up blood. I subsequently had 2 lobes of my right lung removed to get the growth. That was in February! By April I was admitted to the hospital because I had pneumonia and purpura on my legs which it was then they said it was vasculitus but had to test to see which one for sure. Over the course of 5 years, I complained of aches, bowel and rectal problems, sinus problems etc. Nothing was ever found but the Dr.'s said they believed me that I was having issues because I had a radical cancer surgery. I thought I was a hypochondriac but was assured that I wasn't. Sore bleeding rectum, stomach issues swelling of joints etc. Upon the dx of wegs, I received several apologies from my Drs. My oncologist felt bad because it had crossed his mind at one point to test for it, but a lot of insurance co. wouldn't pay for testing because there was no exact way to determine unless there is a full flare up. So I have lost my lungs and no chance at a transplant. Kidneys are involved, sinus' and the left ventricle on my heart is not at full strength. Any way, I got a new perspective on life in 2000 while going in for phys. therapy, I passed a young boy, maybe 10yrs, in a hard back brace like mine but he also had neck brace on and they were training him to use a wheel chair! He was wheeling down the hall with therapist getting instructions and his parents walking behind him. His little head hung with disappointment. I'm not a praying man, but when I got past him, I stopped, closed my eyes and prayed to god to let that little boy walk and put me in the chair in his place! That didn't happen but I think about him all the time. Still don't know him. What this did was prepare me for what was ahead and I am glad its me and not my family member, friend or some innocent child that I am in contact with. So when life throws me crap, I pick it up and throw it right back by keeping a good attitude and thanking god for what I have that is good in my life. I knew that, that very day in 2000 that I saw life in a different way and I began to move as much as I could even though my back would hurt like hell! That one day, set the tone for what is the beginning of the rest of my life and I vowed also not to lay down and die. Its this attitude that my oncologist just shakes his head when I see him and he tells me that all that I've been through and there wasn't much hope for survival of the cancer and I'm still going. Fight on man, fight on!

[PJ2010]

Tom, I don't know what to say. I had no idea. I've never heard of anyone that's been through so much. I think if there is a gold medal for people who suffer illness, you deserve it. I love your attitude my friend.

I was in perfect health up to the age of 50. A marriage breakdown dropped me into a hole mentally. Physically I started a downward spiral. My first problem was my body stopped producing testosterone. Serious mood swings, fatigue, complete loss of physical strength and more. It took a long time before doctors identified the problem. Once on hormone replacement therapy I magically returned to normal.

Only 6 months later I developed a runny nose and severe headaches. Initially dx as sinusitis and after 9 months of hell was finally dx with Wegeners. Since then near blindness, burst stomach ulcers etc etc. Some of the worst problems were severe side affects from the meds. So many times in emergency.

After a few years in drug free remission which has been so welcome I now get the cancer.

My short story of nine bad years doesn't come close to your epic battle. I will keep you in mind as I move ahead. You are inspiring Tom.

[Tom]

Your struggle is as much as I did. When it comes to being sick or injured, I think the frustration and pain is the same. We just have those symptoms show up in other places. Your dx of cancer is the same as mine but I got cancer before the wegs and you got it after. However, I do think that my wegeners began at the time of my cancer. I never really recovered from the fatigue that I a constant in my life or other little things associated with major surgery. They said when they did the colon resection that they found it got onto my bladder and so they moved every organ in my body to check for more. That's why they described mine as a radical surgery. What stage are you? I think by your thread starter that you have the attitude to get through all of this in your own way. I think its safe to say that were are all pullin' for ya! Kick that cancers butt!

[maria garcia]

Michelle i didn't know you were diagnosed w lymphoma! How are you? Please take care of yourself we love you here!

[mishb]

Thanks Maria :biggrin1:

It was all a mistake - too much inflammation and infection causing false readings.

I'm good thanks love :wub: