Does the waiting ever stop?

[Ron50]

    Hi everyone. I am a colon cancer survivor. I was diagnosed with an aggressive stage 3 c tumour of my transverse and descending colon in Jan 1998. I had surgery and a year of chemo therapy. I have been cancer free ever since. On jan 22nd 2018 I will end my 20th year of survival. I feel for you who have just finished treatment. Will it come back ,am I cured , How will I know?   Sadly , for most of us , we will never know. I am not being harsh , just honest. To illustrate I will tell you a bit more of my journey.  I was treated with a chemo agent called 5Flourouricil. I had it via a canular in the back of alternate hands for nearly a year. Every fortnight It was enhanced with a drrug called levamisole, 9 tablets ,three a day , for three days. It was banned in the USA in 2001 for often fatal side effects and a belief that it did not really kill cancer. They know quite a bit more about it now because drug dealers in the US are using it to cut cocaine with some drastic side effects on users. I now suffer nephrotic syndrome of the kidneys , believed to be a side effect of the levamisole . My condition is auto -immune. Levamisole is in the family of drugs called immuno-modulators. I have auto immune peripheral neuropathy in both legs and left hand. I have auto-immune psoriatic arthritis as well as auto-immune hepatitis. A botched treatment for my kidneys also left me with type 2 diabetes and osteo-penia { prednisone is nearly as bad as chemo}  . My constant illness caused my marriage to fail so I have been living alone for over ten years. I am 67 and still work four days a week. Does the waiting ever stop? NO . I have been a survivor for twenty years. In that time no one has ever contacted me to see how I have been after having taken a banned agent. No one has asked why I am still alive. Why am I alive? because I became responsible for my own health.   I asked my doctor to refer me to a nephrologist after I was diagnosed with severe proteinurea. He told me to find one and he would send a referral. I did and picked a real dud ,he nearly killed me . I picked another who was about as much help. I finally picked a third and he is a gem. He is currently keeping me alive with cyclosporine twice a day. Stops the auto -immune disease but causes skin cancer. I finally ferreted out a good skin cancer doc. I lose a few pieces every year but he has kept the baddies at bay.. I haven't been so lucky with GP's. Unfortunately if you pass the exams with 51% they still call you doctor. I have just had a massive fight to get a colonoscopy thru the public system (who can afford private any more?) . I was supposed to have it done (scope no 11 for me) at three years which I was not happy about. It was eventually done at three years and six months. My New GI suggested that I had nothing to worry about until he removed four polyps , the biggest 11 mm. He has now told me to have scopes at no later than two yearly intervals.  That is why I am alive , because I would not go quietly away and die. That is my message to all survivors. Don't wait to die , don't wait on the medical agenda. Work out your own. If you are going to make it you have to live in survival mode. Learn all you can about your adversary. Ask lots of questions . Learn to edit the bull**bleep**. Maintain your vigilance and surveilance and never slack off.  I really do wish you all long cancer free lives just remember you are survivors you will probably always be jn the zone so keep your guard up. Hugs to all Ron.

[Paul_D]

Many thanks Ron and I am humbled by your reply, just got back from my 3 monthly check up post treatment and all clear so await the next treatment/check-up in October. Met so many cancer sufferers whilst down in Brisbane getting all this done that makes me feel that I have a common cold compared to some of their problems. Long may you continue to walk the planet Ron, that is my phylosophy for life now as as long as I have this new normal life I am walking the planet.

Love & Best Wishes Ron. 

[Scottdjones]

I had radiation and chemo 11 years ago for a pair of inoperable  malignant brain tumours Grade 2 Oligoastrocytomas. I am still going well with annual scans showing no change to the 2 inoperable tumours I had. They seem to be just fading away and showing less in scans 

I still wake up at 2:30 am in the morning and wonder how long I will get before it comes back.Current trial data for the chemo I had suggests > 11 years mean survival (and mean is growing) so I am now entering the other side of the bell curve. I just keep telling myself that because I took a very unconventional approach to my treatment that I am special. I keep busy and my mind active and am pursuing life as if I never had a Brain Cancer at all. Hope for the best but plan for the worst. (So no going to African Gold Mines to work. 🙂 

[Paul_D]

Hi Scott and let's hope you keep going along the track of being special, you are indeed special as you/we are dealing with a special desease. My cousin Pat who has had Bladder Cancer now for 17 long years and has endured BCG treatment for that long still gets overjoyed when she gets the all clear, I am just a newcommer to Bladder Cancer and have just been through a week of hospital visits and tests with the all clear at the end. I too wake up in the early hours wondering how I got on this Journey but I get up and get on with life, stay positive and keep busy is the key.

Regards

Paul

[Ridgy]

Ron50 you are an inspiration to us all! I couldn't agree more. Despite the advances in health care for cancer patients, we have to be our own health advocates. Had I done my test the year I asked my GP, my cancer would have been caught early and therefore not have metastasized into my lymph nodes. With surgery out of the way, I'm also on that awful "wait and see" program that feels like a slow and excrutiatingly painful way to exist. Sure it gives rise to anxiety, another awful byproduct of cancer. But given it is all I've been offered, I've decided the best treatment is to question everything I'm told at my three and six-monthly follow-ups. It doesn't make me the most popular cancer patient in the waiting room but who cares. We know our bodies better than anyone, and we get one shot to interrogate the experts, so I go at it like a bull at a gate (for that I'll be remembered forever)!

[ojces12]

 Wow msbp, you've got a lot to deal with.  Try to stop worrying about everyone else forgetting.  Try to live

for yourself, not them.  Let them feed themselves etc (unless you have littlies).

Treat yourself to whatever you like, as much as you can (but stay healthy -eg good food and exercise).

I had malignant melanoma (cut out) 5 years ago and OJC adenocarcinoma (oesophagal junction cancer) 3 years ago. (Chemo and radiotherapy (CRT)).

I know money is a major worry for nearly all of us. (I'm single, and have been funding myself for about 3 years - savings and what little superannuation I had is now nearly all gone).  

I have some days where I feel "normal" for a couple of hours. A lot of the time, I feel tired.  Everyone has different

effects.

I agree with the guy who said that you need to learn as much as you can about your type of cancer.  I also agree with the people who said that support services for certain slightly rarer types of cancer, such as oesophagal junction, are non-existent, or inaccessible.

An irony for me is that I'd like to get out of Sydney, and go somewhere warmer and cheaper; but then I'm a long way away from my very good (I think) medical team. 

What is the Brisbane Hospital like? Anyone who knows can send me a private message. Thanks.

[Paul_D]

Hi all and in reply to your question ojces12 I attend the Mater Urology department in Brisbane under Dr Clubb and his team, they are all great and asking questions is something they expect I even used to write the questions down on my hand as I was going into the operating theatre and the doctor would write the answer down on the other hand so I would read it when I came to. They are no different in keeping you waiting for appointments etc to any other hospital but thats just the system, first class team. I also attend the Hervey Bay Cancer Care Clinic for my treatment on a three monthly basis and again they are first class with all the team being there including dietician, physcologist, cancer care coordinator and treatment room which covers all (I think) cancer treatments and as I live 5 mins away even better. I moved up from Sydney 10 years ago and Hervey Bay is a good place to live and warm, they even have a lively cancer care group where you can meet people like myself who can swap stories etc. When attending the Mater in Brisbane I stay at the Queensland Cancer Council lodge near the hospital and they have a curtosy bus that takes you there and picks you up, all free even the accommodation. Sound like an advert for Queensland but it's all good.

Love & best wishes to all

Paul D 

[Ridgy]

Thoughts go out to you re: facing 2 x cancer diagnosis. No matter what type of cancer we have (mine is rare / recurs and therefore incurable but at least it is slow growing), I reckon all cancer patients feel the same way: our identity has been ‘stolen’ and replaced by an overwhelming focus on our disease. The impact of cancer on our physical, mental and emotional health is HUGE in regards to learning how to adjust to this new normal life. No one can prepare us for when our family members move on, as 24/7 we have to be vigilant re: symptoms. How can anyone other than someone who is told they have cancer understand how the disease impacts on ALL our decisions. To minimise this focus, I TRY to stay calm and carry on so that I can find some enjoyment in the everyday. I succeed most weeks, but some days I don't! It is an ongoing battle for me to place trust in the waiting game, and in specialists to allow them to share my burden as I seem to know more about my cancer than they do! All we can do is look to ourselves for strength to get through this. We can do it. Love and hugs from one cancer patient to another! Ridgy

[Leighr]

It’s a question I’ve often contemplated.

i was diagnosed with Stage 3B melanoma in Sept. 2016 and had a full inguinal removal in Dec. 2016.i was fortunate enough to qualify for a Targeted Gene Therapy trial 5rough the Melanoma Institute of Australia in Sydney and I have been told I’m ‘cancer free’. 

My first 3 month check up following the finish of my treatment is coming up in a week’s time and I’m terrified.

Despite feeling fine physically, it’s like having a monkey on my back when I think about my health and the possibility of it returning.

Luckily, I keep my self active and don’t dwell on the negative thoughts but I can’t help wondering how I navigate the next few days before my tests and oncologist appointment.