Lung Cancer

A support group for anyone affected by lung cancer to come together, share experiences, and ask questions.

SCLC: 7 years post treatment

Kegsy
Posted by

Hi

Several weeks ago I had my regular 6 monthly check up at The Christie and there is still no sign of the SCLC returning. As I have always said in these half yearly updates, that I have got this far post diagnosis has had very little to do with me but everything to do with the care, expertise and dedication of the medical professionals including initially  my GP and local hospital, and subsequently to date the ever wonderful The Christie hospital.

Those of us who have undertaken this journey and/or who have recently been diagnosed will have probably started with that one question in their minds; "How the hell am I going to get through this?". Unfortunately there is no standard answer as we all need to find a way to deal with it in our own way and on our own terms.  My personal attitude/approach was (and still is);

  • I am a great believer that my health is my responsibility, so therefore I felt it was also my responsibility to understand everything about the SCLC and the treatment plan. My most used words to the medical professionals during the diagnosis and treatment processes were "What, Where, When, Why and How". I am by nature a need to know kind of gal! 
  • Even though  my consultants provided me with full details of the treatment plan and possible side effects, I did Google everything which helped me to gain a broader understanding of what was direct cancer treatment and what was 'wellbeing' treatment (steroids etc).  I believe that by sticking to the reputable and regularly updated sites such as Cancer Research UK etc, it is easy to sort the wheat from the chaff, and there is a lot a chaff out there!
  • A combination of pragmatism and bloody minded stubbornness; I quickly learned which aspects of the treatment I could  control/negotiate and those where I just had to go with the flow.

The above approach will not be for everyone; as I said earlier this was/is my personal attitude/approach.

The main purpose of my 6 monthly updates is to provide a ray of hope for those recently diagnosed with SCLC and to show that it is no longer the automatic death sentence it once was.

Kegsy x

"If you are going through hell, keep going" ; Sir Winston Churchill
Ginajsy
Posted by

Hi Kegsy

Good to hear from you,  even better that you are still doing so well.

I remember reading one of your updates not long after I'd been diagnosed and joined the site and it gave me so much hope after I'd scared myself silly reading the stats.

We do get people asking about sclc and I do say there is at least one member who posts here and has been doing well for years. I never like to tag you incase you wouldn't want to be. So pleased you come back to update us and give them all hope.

Gina

There are no perfect people, only perfect intentions

♬I should've been more than this, I was gonna be something big, But I never did anything at all ♬ Dan Owen - Icarus
Bamber
Posted by

Hi Kegsy

i have just read your update glad that you have very good news. I was diagnosed April 2018 with stage 4 SCLC it is stable at the minute so keeping fingers crossed. What stage was yours?  What if anything did you change when you found out you had it? Sorry to be asking you questions but it is great to hear that after 7 years it has not returned.

thank you 

Bamber x

Kegsy
Posted by

Hi Bamber

Well done you! 'Stable' is good, so you keep those fingers crossed! Although I refuse to use the term 'cured', preferring to stick with 'stable', my consultant is now starting to use the 'cured' word.

I never asked about the stage as I saw the initial x-ray and even my untrained eye knew it was extensive. Thankfully. although it was extensive,  it was only in the one lung and hadn't spread beyond that lung. I didn't change anything following the diagnosis, in fact I tried hard to keep a sense of normality. One of my mantras was and still is " the cancer may take my life but it will not become my life".

Ask me anything you want, I realise that SCLC is the minority lung cancer on here so first hand experience of it is harder to come by.

Kegsy x

"If you are going through hell, keep going" ; Sir Winston Churchill
Gs38
Posted by

Go girl GO GO AND AGAIN GOOOOOOO

GS68

Salval
Posted by

Hi.  I found your post very uplifting. My hubby has lung cancer.  Being treated with pembrolizumab after savage chemo!!  Doing ok. Problem I have us I am very much like you. I question everything etc but find it impossible as hubby  only wants to hear bare minimum 

Heard fabulous testimonies Re The Manchester Christie.  There was a man treated with pembrolizumab at The Christie by name of Bob Perry. Made the newspapers. Love to find out how he is.

Hope all continues to go well for you 

Salval

There is hope. Don't give up..

Salval

Kegsy
Posted by

Hi Salval

Thank you for the positive feedback; this is the reason why I do the 6 monthly check-up updates.

You do have to respect your Hubby's wishes; however with his permission his Consultants could provide you with the info he does not want to hear. A word of caution though; could you cope with the strain of  keeping potential bad news to yourself? 

I wish the best possible outcomes for your Hubby.

Kegsy x

"If you are going through hell, keep going" ; Sir Winston Churchill
Uglow
Posted by

Hi I’m trying to stop my bad thoughts everyday, I get so scared of my NSCLC return that it’s taking me over. I have just had an infection which started me off again. I don’t know how to cope with the fear. I had a lobectomy in Dec 2016. And Chemo In feb 2017. My oncologist was horrible he said that oh it’s very likely it will return in 2 years me and my husband were flabbergasted at his causal comment. To be honest no one at my clinic liked him and I think his awful manner has permanently scared me. I’m sorry to sound like a wimp but the fear takes me over. 

Uglow xxxx

Gs38
Posted by

Hi Uglow

So sorry about your experience and about your Oncologist: Please trust me and I know this is hard to do, but here goes

Fear, Dread, worry sadness are all negative emotions, Completely understandable but very very negative:

How do I deal with that? I can only tell you, cancer if you let it will control your life: The beast as we will now call it needs to be tamed:

Now I know I have the beast, I have not got time to waste, my life as is yours is finite and we have no time to waste on sadness, fear and negative emotions: We have to focus on what WE WANT: set out the steps and goals we want to achieve, the time limits we ourselves put on these goals, the Positive people we lean on and the things WE want to do: Start by waking up in the morning go, for a walk, feed the birds in the garden, look at and admire the beauty of nature all around you and be glad you are alive to experience it, hold your husbands hand reassure him everything will be ok he will be far more frightened than you, be strong for him, show him that you are going to take control of the beast, you are going to push through, liase with your MacMillan nurse enlist her support in pushing your treatment forward, Together we can and will control and beat the beast. Think only positive thoughts carry through only positive actions. Trust me we CAN and WILL win, your husband and family will pick up on your positive thoughts and actions and will push you onwards and upwards, and before you go to bed at night thank your husband for his love and support and tell him how you look forward to wakeing up next to him and spending another day in paradise with him

Love to you both

Uglow
Posted by

Hi, I will try to do as you have said. I know your right. Most days when I wake up I do feel lucky to be alive. It’s just recently Iv relapsed. For any quality of life I need to do as you are saying. Me and my husband often takes rides in the car to observe the countryside. It lifts our spirits. I always  him how glad I am to have him by my side and I truly am. My Cancer has crippled him too I see it in his eyes. I will try very hard to bring back his real smile. Thank you x

Humphreybrm
Posted by

Hi GS38, that was wonderful and you lifted my spirits, thankyou.

Mick

Mick H
Gs38
Posted by

My pleasure I am lucky the way I am wired if I can support and help anyone else traveling the same road as me then reach out hold my hand and together we will beat the beast!

Gs38
Posted by

Tell him, do not let the beast win, look at me with clear sparkling eyes, show no pity nor pain, look at me with love from your soul: tell him this and his smile will return

GS XXX

Uglow
Posted by

Hi Gs38 

feeling in much better spirits today and have been for lovely drive in sunshine with my other half. Had a coffee and just chatted nothings. Than you so much for your support yesterday. Xxx

uglow 

Gs38
Posted by

So pleased for you: for myself had a meeting  today with my anesthetist they have finally promised to find a place for me in theatre next wk

Onwards and upwards have proved to them that dispite my lung damage they have to do this lobectomy and I can beat this

So my news is great You keep pushing forward stay in touch keep positive

Xxx Gs