My Journey into hell has become a nightmare

4 minute read time.

Hi, I am Keith, I had a very bad cough and very little energy which was very unusual for me, I was tired all the time as well. I decided I had to go to see my GP about it all. Because i had been a smoker all of my life, he dicided I probably had a broncial  infection so gave me antibiotics,and an inhaler, needless to say these did nothing to help. After taking the course of tablets I went back to the doctors and saw a different doctor who actually had the nerve to say there was nothing wrong with me and that I did not even have a cough. I said to him what my normal doctor gave me, and he actually said it was purely to keep me happy and give the benefit if the doubt. He then proceeded to prescribe me a nasal spray. Within 2 days my cough was literally constant, and my wife who happens to be a medical secretary in the Chest Clinic of our local hospital, spoke to her consultant, who suggested I went immediately back to see my GP, This I did along with my wife. He could see I was not well and eventually after much prodding and suggestion by my wife decided to send me for a chest x ray to query COPD. 

 

The x ray was done the next day and 2 days later my world collapsed. A consultant in the Chest Clinic always reviews the X rays and mine was the only one he flagged for fast tract cancer referral that day. needless to say it was spotted by my wife almost immediately. To try and cut a long story short, I had a tumour in the right hilem of my right lung. The first step was a CT scan, which indeed confirmed it was a tumour. Because of the position of the Tumour I was not able to have a Broncoscopy    so had to have a CT guided needle biopsy, which provided the answer to what type of tumour it was. It turned out to be a Non small cell carcinoma. which had already spread to some of my Lymph Nodes, and one in particular was causing a lot of concern to my consultant as it was outside of the lung beneath the branch point of the wind pipe. It had already been agreed that I would have a Lobectomy  to remove the top half of my right lung, but would first need to have a pet scan to see if the Lymph node was cancerous of just inflamed due to an infection. 

 

The pet scan was arranged for the following week and the results were given to me 3 days later. By this time I had not slept anymore that 4 hours a night since the original diagnosis and was rapidly running out of energy to fight this rubbish. Well, My wife and I along with my Cancer nurse met with my consultant with a little hope in our hearts that it was going to be good news.  It wasn't, it was for me bad news. The Lobectomy was cancelled because the pet scan had showed the cancer had spread the the one initial Lymph node but also to more Lymph nodes in my chest region and they were showing warm to hot.  The next decision was to decide how they were going to biopsy these to check if they were indeed cancer.  I had two options, a Mediastynocopy or an Endoscopic Ultrasound with Fine Needle Aspiration for which I would have a round trip of about 100 miles.  The decision was made for me to see the surgeon to discuss the option of having the Mediastynoscopy and because the procedure could be done the once because of scar tissue he was reluctant to do it at this time. It was decided that I would start a course of Chemotherapy in order to reduce the staging that I was at in order for me to go back to the original plan of having the Lobectomy.  

 

So, today, I decided I would do this blog, and as I started it the phone rang, and it was the hospital asking me to go in next Tuesday 7th for a Ultrasound needle biopsy of my neck.  MY Neck????? Having just put the phone down it rang again, and it was my cancer nurse, wanting to let me know that following the MDT meeting last night more concern was shown towards a couple more Lymph nodes in my neck and collar bone area. They needed to biopsy them as they appeared small and new.

 

At least now I have my date for seeing the Onclogy Consultant which is 20th april    and my chemo starts the next day 21st. , well thats the plan anyway. 12 weeks later another pet scan hopefully showing the Lymph nodes have shrunk in size and I can have the Lobectomy.

 

Well had an ultra sound on my neck today as the cancer has spread to some Lymph nodes there as well,  and they took a needle biopsy of another enlarged lymph node  for testing before my chemo starts. Just in case they need to change their minds :(  and approach it a different way.  All in all not a good day. 

 

I saw my oncology consultant today and was due to start my chemotherapy tomorrow. She dropped a real bomb shell on Jan and me. My Lung cancer has spread to outside my chest and into my Lymph nodes so has become Stage 3 cancer making it all inoperable. 

 

I am going to start my Chemotherapy tomorrow although it seems pretty pointless, I guess it may ease the symptoms for a while. However if I find the side affects to bad I will stop it, and well see what happens. 

 

All in all a very very bad sad day. 

 

 

 

Anonymous
  • FormerMember
    FormerMember

    keith this story is identical to my husbands , we have just been told 10mins ago that his chemo starts on the 12th april, my husbands cancer has aso spread to his rib bone, i wish you and your wife all the luck in the world, big hugs......

    sandra.x

  • FormerMember
    FormerMember

    Hi Keith, take each day as it comes, some are crap and others fine, i have cancer in both lungs, inoperable.  Had my first of 4 sessions of chemo.  second next week.  big hugs and positive mental attitude, easier said than done.

  • FormerMember
    FormerMember

    Hi there,

    writing this in the hope that I can support.y mum was diagnosed with nscl cancer in May last year. She was not given  good prognosis. However after 6 cycles of chemo and 20 sessions of radio. Things are stable and she is doing ok (apart from being a bloody moody nightmare lol). I will not pretend it's been easy, emotions go all over the place, but there is hope. Make the most of the good days and live life to the full. By all accounts my mum is well past her sell by date now, but she stuck two fingers up to the big c. If I can be of any help let me know xxx

  • FormerMember
    FormerMember

    Hi Kieth, I had lobectomy 2 years ago, 9cm tumour so had ct guided tests and pet scan. After the op I was judged as not being strong enough to withstand the follow up chemo, so I didn't have it as the onc said it would probably finish me off. I am still here, working part time as the DWP tossers stopped my ESA  [not ill enough]!!!  Dont worry, stick two fingers up at it and keep your pecker up !! A laugh a day keeps the doctor away.

    Take care, Bill xxxxxxxxxxxx

  • FormerMember
    FormerMember

    Hi Kieth, things sound tough to say the least but dont quit !!!  Contact Brumigem and Kezzerbird and they will inspire you with their courage. Fight it all the way, you've got nothing to lose, you can only win, but if you dont fight you definately lose !!!

    As I keep saying "It aint over 'till the fat lady sings".

    Big hugs mate ((()))

    Bill