Not good news but not doom and gloom

[Jenco]

Hi Everyone

I was diagnosed with Stage 4 NSCLC last October and was treated with chemo/radiation with the hope of curing it. Even though the journey has been a rocky one there have been lots of lovely things along the way - in particular the wonderful love and support of family and friends. Lots of trips out for coffee, lunch and to see snowdrops, daffodils, bluebells, rhododendrons and many other things that you barely notice when you are well.

The last month has been difficult. A CT a month or so ago showed there might be some residual cancer left and a subsequent PET scan confirms this. I am to have four cycles of GemCarbo to try to keep the cancer at bay. My care has now gone from curative to palliative and if I do well with the chemo I can expect about twelve months. This is obviously not the outcome we were hoping for but it is what we have got. We shall continue to do fun things and enjoy ourselves with friends and family as much as we can. Nice times for me and good memories for them. Next week I go pillion riding before I start my chemo and my list of things to do is being added to all the time. I hope I am around long enough to enjoy them all. Of course I am sad but I am also very positive to make the very best of the time left.

[Harrypalmer]

Hi Jenco, please , please disregard your given "sell by date". I was given the same news over TWO years ago. Yes, I have had progression, after two ops, two lots of chemo and more recently four months of Tarceva which sadly didn't work for me, but I still have options available. Unfortunately, because I also have CLL I am exempt from any clinical trials. Discuss with your Onc if you can get tested for any new mutations or if any trials are available. Do not give up and carry on enjoying your trips out.

Positive thoughts and hugs. Moni xx

[Jenco in reply to Harrypalmer]

Cheers for your positive reply. Unfortunately there aren't any trials that I am suitable for at present but the hospital that looks after me participates in clinical trials and will contact me if anything comes up I have been tested for mutations and again unfortunately I haven't got any. My cancer isn't being very obliging but I am hopeful that twelve months is the minimum and all extras are a bonus. My oncologist is a good guy and I have great confidence in him and I know there are other options after this. I feel I am being well looked after and offered the best treatments available. I won't give up. I love life too much.

[Lainey3615]

Hi Jenco

I have just read your post and wanted to say carry on enjoying your trips out and making lovely memories not only for family and friends but yourself too. I have Stage 4 Metastatic Breast cancer in the lung and now take pleasure in the simple things like watching the trees blow in the wind, the sea making lovely sea horses etc. never give up though as you never know when a breakthrough will come along and give you extra time. I have been told my Cancer is not curable but I am enjoying ever day and having fun along the way.

Wishing you lots of lovely days out and keep us updated.

Love and Hugs Elaine xxx

[Jenco in reply to Lainey3615]

Lovely to hear from you. Yes it's's amazing the pleasure you can get from simple things. We have just had a fun couple of days with our daughter and grandson. He is six and just loves to play. We have laughed and laughed playing tiddly winks. I get sad if I think of the future so I concentrate on enjoying the here and now and that is lovely. Tomorrow is my pillion ride - I am very excited.

[littlenanny in reply to Jenco]

Hi Jenco,

So sorry you are going through all this, but don't give up hope, keep enjoying the lovely simple things you are doing along the way now, none of us knows what the future holds with this horrible beast so we embrace each day more, how was the pillion ride? I used to love riding pillion years ago when we had our motor bike such a feeling of freedom, wishing you all the best and keep smiling, keep us updated

Margaret x

[Lainey3615 in reply to Jenco]

Glad you have had a lovely time with your daughter and grandson, hope there was no cheating involved in the tiddly winks 😄. The pillion ride sounds great and I hope you have fun doing it. I have a friend coming to visit at the end of the month and we are going to have Spa Days and a visit to the Monestary near Lockerbie so that will give me some lovely memories. The one I am really excited about is going on a paranormal investigation, yes I am nuts, but in a nice way.

as you say concentrate on the now and have a blast.

Let us know his you are doing and keep us updated on the pillion ride.

Love and Hugs

Elaine xxx

[Jenco in reply to Lainey3615]

There was loads of cheating -I don't know who was worst and I've no idea who won. Not nuts - enjoy everything and the spa sounds great. It's so important to have nice things to look forward to. Good luck with everything and will keep in touch

With love

Jenny xx

[stewart58]

Hi Jenco,

Sorry to read that your latest pet scan results are not as you would have liked.

I agree when we are well we do not know how important it is to look in the garden at the flowers ect.I really enjoy feeding the birds every day.Having time with the grandchildren is time well spent.

I hope the chemo goes as well as it can for you.

Stewart

[frank7286]

we all have that fear but do not put a expirey date on it! you go and get out their as best you can and have a life, how knows what tommorrow will bring, live life and enjoy frank

[LorraineD Partner Roy Castle]

Jen

Hope the sun shone on your pillion ride. As Frank says we all have an expiry date, but it is a tricky thing when someone gives us an estimate and can shatter our illusions that it is never going to happen to us..

I hope you get a good response to the chemo and if we can be of any help do let us know. Making sure you set your priorities, take advantage of the times when you fell well. Be realistic with yourself and as Moni suggests remember statistics are averages and can't tell you exactly what will happen for you and when.

best wishes

Lorraine

on behalf of the Information & Support team