A journey

Hello everyone,

I wanted to share my experience of lung cancer (NSCLC) with those recently diagnosed, the long term fighters and the care givers. I hope that no one will be offended, remember everyone is unique.

My Mum was diagnosed with NSCLC in April 2015 (April is now my least favorite month) At diagnosis she was stage 3B and in a lot of pain in her back. She has been suffering for a year prior to her diagnosis and had various scans and even her gall bladder out until the cancer was found.

My Mum was 65 and I was 30 at the time along with my older sister Tracey and older brother Paul. The news was a horrific shock to us all and I can say one that changed my world and outlook on life, sometimes for the good and sometimes for the worst. My anxiety levels have remained and stay high yet I am softer and more approachable and considerate to others. There are so many of us facing this battle whether at someones side, or as a cancer patient. I found and still find myself in a shop or out and about looking at people wondering if they are experiencing the same as I am. 

In June 2020 my Mum passed away after a 5 year battle. This is not the end of the story both on here or indeed for the great unknown of what happens next.

The statistic at stage 3B was 6 months, my Mum was offered 4 rounds of chemo and completed 3 and the doctor was satisfied with the shrinkage of the tumor and my Mum simply could not face a further round. The doctors got her pain completely under control quickly with the right level of pain medication and offered wonderful support. She also had 12 rounds of short radiotherapy straight after. 

After the treatment ended (around July) my Mum bounced back quicker than expected, we both went on holiday to Spain and enjoyed the beach, meals and a lot of bacardi and diet coke (my Mum's favourite tipple) I am sure the advice is to not drink but there must be a balance and time to unwind and take a moment to think what the **** has happened and I am so glad we can just be here.

Lots of happy days, weeks, months then passed and about one year after the chemotherapy there were a few niggles showing. After various appointments it was found that the cancer had spread to the thyroid and the cancer was now stage 4 (the outlook at stage 4 is much the same as at stage 3B) and we had already doubled the statistic so fight on! The choice was more chemo or immunotherapy (Keytruda). Immunotherapy at the time was new to the table and not as readily available as perhaps now. We went with the Immunotherapy and I am so glad we did. It worked a dream with immediate results lasting 2 years! More holidays and great times were had, my mum was walking miles and enjoying life and family and a bacardi and diet coke or two or three. 

Then comes the fall! The drug is only funded for two years. We can't have anymore, despite the cancer completely shrinking from the thyroid and further shrinking the lung. (For those unsure about the outlook of using this drug and as stated we are all unique please take something from the amazing things it did for my Mum). 

After the immunotherapy ended we continued as normal, my Mum had her last scan to see how the final effects of immunotherapy had worked (be aware the 3 monthly scans showed continued good results) but then it happened. Something showed on the hip. At the same time we were legally fighting to get the immunotherapy extended and had decided to pay for it to continue privately. The sudden a change to the scans coincided with the same time we fought the 2 year rule and started paying privately. 

2 months later my Mum had ear ache so had a brain scan. Something was detected and the privately paid for immunotherapy ended. Another test was carried out (More anxious waiting) and it was gone. 2 months passed, another check up and something else shows again on the head scan (very small). We were offered cyberknife with a strong success rate. My mum had the treatment and back on we went. They stopped the immunotherapy for good once something showed in the brain due to lack of research. This may now have changed but I continued and remain slightly suspicious about it all. Something never sat right. 

3 months on - a scan to check all clear (as they expected) well no, this didn't happen, it was shown the cancer had spread to the lining of the brain and was not treatable. They gave my Mum weeks. At the time she was fine. I questioned and researched everything, I wasn't having it! I asked if there could be a mistake and was told 100% not. We did seek a second opinion and were told they were unclear on the scan and would like to wait and see. During this time I decided the start her on cannabis oil. Anything to help, we were desperate. We went away for a weekend and my Mum managed a 5 mile walk. This was a month after the weeks to live diagnosis. Something not right here, you think? Yes you would be right. Home we went and another scan was called. The results this time were drastically different, it had gone. They couldn't explain it. I asked how they could have been 100% sure only one month ago, they couldn't give me an answer. 

This all happened in May 2019 and my Mum was never the same. The whole thing completely knocked her and I think she had just had enough. She asked for some time away from the routine scans. (I think they scared her so much with we have found this, and no actually its now this and no you are alright that she couldn't take anymore). 

She passed away just over a year after this, she'd had enough. She stopped going for scans and appointments. There comes a time, there isn't a right or wrong choice, it's so personal and you must allow this. I tried to keep her fighting but she seemed to know and accept she had done all she was prepared to do. 

I love my Mum dearly, she is the best person I know and achieved so much in her life. She was a successful business owner and lit up the room where ever she went with her amazing fashion sense, wicked smile and aura that enticed you to be around her. I know that she is somewhere now lighting up wherever she is and believe the next chapter will see us together forever. 

I wanted to write this, if anyone is still reading to say.

You are unique, you are not a statistic - My Mum had a 2% chance of surviving 5 years yet she did and for a lot of time she lived well. The stats are outdated and google is not your friend!

Don't take a doctors word for everything and question everything. If something doesn't feel right there is often a good reason it may not be. Ask for a second opinion, feel in yourself if something is or is not right. The doctors have been amazing but they are only human, they get it right, they get it wrong. Don't shy away from asking.

As a loved one of someone with cancer, look after yourself, know when to fight with your loved one and for them and also know when to respect their wishes. 

Don't give up hope, even in the darkest of days, set your expectations high, believe in how amazing you can be and only when you need to allow yourself to end your journey into the next amazing one.

Vickie x