Cancer, long term effects from treatment

@JanetteR Well said!

I am tempted to add a huge list of things to this post - but i always try to remember that i am glad and grateful that i am still here - so need to temper it slightly. I wasnt that shocked to get my diagnosis - i had had a few lumps in the past - but my last one felt different. Even though i was prepared for the diagnosis it still had a massive impact. Whilst still dazed the consultant handed me sheafs of papers containing my treatment, possible side effects etc. He asked did i smoke and said if i did i should give up or chemo wouldnt work. I looked at the papers and read the warning that chemo can cause death so i asked could it kill me - he said yes and more or less walked out. I used could it have spread and he said yes possibly it usually goes to the bones. I sat there totally dazed until a stop smoking nurse came in. That set the theme for how i have dealt with the whole of my treatment and recovery period. I didnt dare ask any questions in case i got similar answers, i allowed anything to be done and given to me and didnt question it. I didnt know what the long term effects of treatment would be because i didnt ask . However, the main long term effect of my treatment is severe depression and anxiety, so that when i get a joint pain (probably from the letrozole) i think "its back" or "it is in my bones" and up goes the anxiety - which some days is totally debilitating.  When i was having treatment i mentioned it to the nurses and they knew the consultant i was talking about immediately!!  As has been said patient advocates would be a great idea in service design and delivery. I know that we all have our own personalities and some of us are anxious anyway but definitely the way i was treated has had a major impact on my post treatment side effects. Now .................... should i start on all the side effects !!!!!!!

I believe that's part of the issue - we're grateful for being alive and then feel guilty if we criticise the profession that treated us.  I see no such reticence to push for improvements in any other cancer groups - breast cancer communities have successfully mobilised funds, politicians, big companies and many others to raise awareness and improve treatments and outcomes and indeed clinicians expect questions from their patients.  Lung cancer is at the opposite end of the spectrum - I've even had it said to me by a clinician ' you don't seem like a typical lung cancer patient with all your questions - more like a breast cancer patient'.  Assumptions are evidenced by all clinicians asking me about smoking history despite never smoking nor living with somebody who smoked.  Clinicians need to wake up and realise there are so many more factors at play - other countries have recognised the role poor air quality and exposure to substances through industry/work impact our lung health.  The nihilism and fatalism I experienced when diagnosed in Jan 2011, led me to offer to join Roy Castle Foundation's patient information panel as it certainly wasn't offering hope of returning to work or meaningful life. That isn't the case now and their literature has won awards for being straight forward and informative.  I don't think cancer patients ever recover from the anxiety that every twinge/ache/temperature change is related to the original diagnosis but I found a book called 'cancer is a word not a sentence' by Dr Rob Buckman really helpful for me to put this into context in my own mind. 

@JanetteR I will look at that book - thankyou. I do have a couple that have helped. I also have volunteered for patient info panels ! It is actually good to see that that there is much more focus on life with cancer still being life, as it is - thankfully - but there are side effects to manage. Anyway, and with much gratitude for all that has been done for me, I am going to take the acid tablet that i now have to take (with pleasure) and then pack for a holiday i might not have had (with gratitude). XXX

Enjoy!  I took up international travel again in 2016 after a 6 year hiatus as found the cost of travel insurance prohibitive but although had several staycations/weekends away, British weather is never the same as being in a warm climate and experiencing some of the so foreign situations!  I certainly view life very differently now and try to stop taking health for granted but also try to make the most of every day and situation.  good luck. 

@JanetteR Thank you - I will. Anxiety through the roof at present - just hope I can breathe through it and get to the airport. Will deal with getting on the plane after that. Like you say - make the most of every day and situation. Thanks for your kind words.

@stakjo If you're feeling very anxious you should read our article about CBD oil, which is given for people with chronic pain, anxiety and sleeping problems. It could be worth a look, living in anxiety is very difficult :\ 

@JosephineO I will do. Thanks

Good luck.  You could also try mindfulness to counter the anxiety - focusing on small tasks and savouring every part of it - smell, sight, sounds, touch, sense and living in the moment - i.e the 'what is' rather than worrying about the 'what if'.  We are stronger than we sometimes realise and can be amazingly resilient. best wishes 

@JanetteR I have done some mindfulness at mcMillan - i dont think at the time i was ready for it. Will give it another go. thank you.