Greetings!

[Rhysiefurr]

Hey all

Kind of new to all of this (in so many ways), so not sure if this is the appropriate place to post an introduction. My apologies if that's not the case..

My name is Rhys. Although born and raised in the Welsh Valleys, I spent most of my adult life in east Asia before moving to Manchester in 2012. In July 2015 I went to Manchester Royal Infirmary with achy legs; over the next two weeks my diagnosis quickly escalated from severe DVT and stint on Warfarin to incurable / inoperable [I don't know what the difference is any more] Stage 4 Adenocarcinoma with secondary sites in my pleura and rib cage. Surprise doesn't describe it. It really felt like a joke. The cause is totally unknown. The "right" suspect genes are mutated, but in the wrong way. I am only 36 and don't spend my days stripping asbestos.

I was given an initial untreated prognosis of 18 months. I was quickly transferred to The Christie as an outpatient and put on a tri-weekly chemo scheme of Permexetred and Carboplatin, which I have just finished the initial six belts of, whilst continuing to have to inject anti-coagulant twice daily at home in order to prevent DVT or a PE finishing me off q lot quicker.

On the upside, chemo has gone much better than expected. Chemo that was only supposed to "arrest" growth (which seems weird, given that I was obviously not having CT-scans pre-diagnosis and have yet to have any sort of biopsy/histology) has in fact resulted in a significant shrinkage of both my primary and secondary tumours; side effects have been no more unpleasant than a case of the flu [apart from the accursed steroids, their sleep disruption and assault on my sense of taste] and I remain, blood clotting issues aside, pretty much asymptomatic.

And yet I am still in Hell. I understand that my carbo-permexetred must finish now, as it's too "toxic", despite it's positive results. I may, if I am lucky, be put on to something The Christie is calling a "Maintenance" regime of just the Permexetred, to try to keep me stable.

I realise that I am going to die, relatively soon and am fairly reconciled [slash-resigned-slash-head in the sand] about it. That's not the thing that keeps me up all night. I know pain can be moderated, that I might just drop senselessly tomorrow from another clot in the torso. Perhaps it is the fear of absolutely everything else that keeping me awake at night.

I've been writing for my friends and family on Facebook/GoFundMe [I am far from affluent enough at this age to be unemployed], and they have all remarked on how "positive", "brave", etc I am. Of course, as I am sure you guys may understand, that's because I've only been able to write on the days in which I feel upbeat

Maybe I just know I can't do this on my own.

[Tina60]

Hi Rhys

Not sure what to say except so sorry to hear your news and can understand how shocked you are. There is always someone on this site that can advise and listen and knows what you are feeling.

Best wishes

Tina

[Olic]

Thanks for letting us all know how you feel. I find the site very supportive as there is always somebody on the forum know what you are going through and have put their thought down like you have done. Also able to offer help support and advice.

A few people (friends) have not wanted to know. But I have found how very supportive other friends and neighbours are once they got over the shock of my health.

I agree there are negative times and down days but I try to stay positive most of the time, though it can be difficult when somebody is negative about your health and you end up having to support them not the other way around.

As my Nan use to say " Us Welsh are stubborn and strong willed people."

[Jmc8]

Hi Rhys

You don't need to do this on your own - as I've found out there are some people you can really be you with on the dark days - you'll know who those ones are. My biggest release has been seeing a psychologist through my local Macmillan centre - I've been able to say things to her that I haven't to anyone else. Have you been offered any support like this? It's all so early days for you I'd imagine you are still in a whirlwind of processing it all let alone dealing with all the medical stuff. I was diagnosed in Sept 14 & would say it took me quite a while to get my head round it & not be in total disbelief that it was a bad dream & they had got it wrong as I'm in my 40's & I'm one of the lucky ones who could be operated on.

I'm from Manchester (near Christies) although moved away years ago but my dad has been treated there for years - they have been amazing in their care & trying out latest treatments so you are in good hands.

Thinking of you

Jo

[Peterkin102]

Hi Rhys,

Understand how you must be feeling right now. sometimes its can get real lonely battling this disease. Its best to have some company and support.

It seems from your descriptions you have locally advanced Adenocarcinoma confined to one half of your thorax? that is there's no metastasis elsewhere like in the brain, bones, liver etc. I pray not though very close surveillance with regular CT and MRI scans is the order of the day.

since they have not found any treatable mutations your treatment possibilities would include chemotherapy, radiotherapy, immunotherapy, cryo therapy and even surgery. Yes, surgery in stage four non small cells lung cancer is not unheard of. check out Mother-in law post on the Inspire web sites. my wife had surgery for hers.

management of lung cancer has advanced tremendously since the last three years and if we do not advocate for ourselves our onc may not, as many are, sadly, still old school.

you got to do a lot of research and fight the battle with lots of help and support from family, friends and other survivors .

I wish you the best.

Peter

[Janey_H]

Hi Rhys

As Peter mentions, I would have a look on the Inspire forum

inspire.com/groups/american...

and perhaps post a similar introduction message to that group. There are many on that group who are stage iv and I am sure people with a similar diagnosis to yours will get in touch. I found it helpful for getting questions I should perhaps be asking my medical team.

You aren't alone in this. I know how much of a shock it is when diagnosed but often things can change as treatment progresses and options may become available to you. Keep asking questions and get another opinion if you are unhappy with the advice you have been given.

I wish you all the best and there are treatments out there for stage iv so don't give up and don't live to anyone's 'expiry' date. Keep yourself as fit as possible, eat healthily and keep hydrated.... And try to keep smiling.

Janey

[pea-green-boat]

All the best to you Rhys, do the research on treatments and poss ops or trials as the others have said...Find an outlet if you can for the times you feel crushed. Some good suggestions from other replies.

Keep up the good spirit (yes I remember the well-meaning "strong" and "brave" comments from the evidence of good days...and I felt like saying "what do expect that we're going to lie down and just give up??!").. And seek out hopeful stories to bolster you....I have friends who have lived well and kept cancer at bay for years when their original prognosis was months, and there are some inspirational and hopeful posts on this site.

The 'out of the blue' nature of a stage 4 diagnosis left us stunned for months. My husband was a similar age and was superfit and rarely ill priir to getting pneumonia. All I can take from it is that as far as you can, you have to live now - NO ONE knows how long they have here, and though you don't know the future, cancer makes you look at time remaining in a different way. Eat well, sleep and relax as much as you can, stay active and do things on good days with people you love.

Sorry so long...was expecting just to write a short note.

Best K x