Knowing How To Cope is taking it's Toll - British Lung Foun...

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Knowing How To Cope is taking it's Toll

Guy59
Guy59

Hello Everyone ,

This is like a second part to my story a few weeks back.a few weeks have past now and finding life diffucult at times, I admit I am depressed at times, and still in tears at time. I feel so damm scared and the not knowing.

18th March I was once again diagnosed with lung cancer . I have COPD and on Oxygen for activity In 2016 September 12th I had a left lung lobectomy bottom half removed , because of two cancers on lung, operation was successful, recovered from that, i also have fibrosis and emphysema , cannot have SABR treatment.

The suggested course of treatment is Radiotherapy, problem is it is the treatment which will scar a proportion of my lung and make my breathing worse with having to use Oxygen continuous, where at present i use it for activity. so yes can get rid of he cancer ,but will be left with even more breathing problems, this I am petrified of if this happens,

so i have decided to have CT scans every 3 months and see if the cancers get considerably worse , than make a decision on treatment of Radiotherapy, it is about quality of life at present , this has hit me very hard . Next CT scan beginning of June. My breathing has got worse since January as I just had a lung function test , I have asked the lung specialist Doctor if there is a drug which can slow down the decline of my fibrosis, he say there is ,but are complications with it , so he will not recommend, he offered me Pallitive Care only that's it , he said it is not for end of life only , but for those who last year's too , meaning me, came out of the room devastated to be honest ,

Coping over the past few months have taken there toll, I feel I need something but don't know what, so frustrating. My wife has been strong for me , we get through each day , but I am scared. Thanks for reading this and any comments welcome

thank you

16 Replies
oldestnewest

You’ve been through so much Guy so it’s little wonder you’re scared. I’m sure others will be on soon but I just wanted to say you’re not alone and we’re here for you.

Best wishes. Xxx xxxx

Guy59
Guy59
in reply to sassy59

Thank you kindly

Kittykat2
Kittykat2
in reply to Guy59

Thinking of you guy understandable that your scared ....thinking of you 💛keep posting lovely people on here that care 💛x

Hi Guy59,it's understandable that your feeling this way, but your doing things your way and making your own choices about radiotherapy not letting this illness tell you that you have to have this now, palitive care dosent mean the end of life,and you may pop over to the other side tomorrow, it just to help you manage to breath a little easer get things under controll, you have a lovely strong supportive wife,try and go and do somethings, it's not the end yet as the Dr said it's for people who have years to me that's lots of years, try and think positive we have too or else you will miss out on living, best wishes to you, and try and have a lovely day tomorrow 😊x

Hidden
Hidden

Guy you have ever reason to feel as you do. I pray you find peace of mind. Life is unfair. God bless

That is so much to deal with. Keeping a close eye on how things are progressing seems like a good idea. Palliative care no longer means end of life care. I don't know why it's still called the same thing when it means something so different. Now it means care and support for your needs. They can help you to cope with this all and help you through it. Wishing you all the best.

When I received SABR for my tumour, I noticed that it was termed as Palliative Care, not a helpful term and took me back a little, I understand how you feel. But I have every hope that it has been a success and will eliminate the tumour, it is just taking it's time die off.

Oh Guy 59 I feel for you and all that you are going through. It would be devastating coming out of the room with the news. If there is little that can be done in the usual medical channels, could you maybe look at seeing an alternative doctor who uses a nutritional approach to healing. So good that you have a very supportive wife. My thoughts and prayers are with you.

Thinking of you Guy. You are not alone. Liz x

Awful for you, and I send you my best wishes. xxx

Thinking of you and your family. Small wonder you feel scared Guy59.

But you have come this far DONT stop fighting now. We are all here for you.😊

I understand your fears and depression with it all!! I remember freaking out when the consultant used the term palliative care as well!! ( that was two years ago! ) I so agree with your quality of life decision, I am all for this as long as I can manage it. I refused the drugs because of the high side effect profile. I can't see the point of prolonging life for the sake of it? Do I want a couple more years to be reliant on oxygen 24/7 and need permanent care? I know these decisions are not for everyone but they are mine. I take each day as it comes and am grateful for the times I enjoy. I am waiting for my daughter to pick me up to go to our local garden centre to get some plants.Its a gorgeous day and all being well my friend will come round tonight for a drink or two. We still have a lot to enjoy,sending hugs!

Hello Guy59. Sorry to hear about all your illnesses. My personal philosophy is to deal with each day one day at a time, this seems to help me. I keep an eye on the future but try not to live in it. All the best from Clare x

So very sorry to hear of your situation. It seems there is no right or wrong answers as everything comes with it’s own problems, so the decisions you have had to make must be very difficult I have no doubt you felt devastated. Will pray things will start to look up for you.

Asking blessing to come your way, Guy. A small spot" discovered a little more than a year and a half ago being monitored (no growth so far) creates terrible anxiety. One can only imagine the difficulty coping with having a second go at the actual illness. Best wishes for good outcomes all around. J

thank you all for your kind comments, much appreciated , hopefully i can have some positive news for you one time

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