Hi

Hi Deb 1 E,

Take heart from what they have said treatable but not curable is a lot more optimistic than terminal. There are lots of us on here who have been here for years, there’s no guarantee that says how long we have but, you will have a good chance once you get on your Chemo. To answer your question, yes, it does get better and you will start to see yourself as ‘ living with cancer ‘. It makes a difference to how you feel then. Of course meltdowns happen but allow yourself to have them and then you just pick yourself up and start again. I know it’s hard but, we’ve all been there and you will get through it. Just like the rest of us have. 
Others will reply far better (was looking for another word but couldn’t spell it) than me to help. But I just wanted to say you are not on your own.

love and hugs

Maggie xx

Hi Maggie

Thank you for this.  I have been trying to look for positives but I am struggling, the strange thing is I have been feeling better than I have for ages so it was a big shock and because my appointment was on the telephone I have to sign the consent forms and have blood tests somehow but they are working on it.  I have had two telephone calls this am - including one for a wig.

Debbie x

My heart goes out to you. I was diagnosed with the extremely rare and highly aggressive Merkel Cell Carcinoma in October 2019. I was given a prognosis of 5 months. The cancer had already spread to my pelvis and spine. Whilst 'incurable' I went onto an innovative treatment plan, deemed 'end of life' therapy. Which in essence means 'try slow things down and prolong life'. It has thus far worked very well. Having got all my support mechanisms in place to help me through this nightmare, they were all swept away by having to be in isolation for 12 weeks. However, I struggle on, as we all must.

The important thing is they have a treatment plan for you. Start it as soon as is possible. Take every measure possible to shield yourself from Covid.

You are not alone in suffering the tremendous emotional turmoil you are going through. Stay strong but share with the rest of us who are here for you. 

Hi Deb1E

It’s nice to meet you - although I wish the circumstances were different. 

To get straight to your question, yes it does get better, and I say that with four years of experience behind me.

Living with cancer that can be treated but not cured is quite a different proposition from dying from cancer. It makes a real difference if you learn how to live with this cancer but I do know from experience that this can take time and effort. You may find that you go through a grieving process, of saying goodbye to the life you thought you were going to have, before you can accept life as it now is. Go easy on yourself. Ups and downs are all part of it.

I’m really glad to hear that you’re feeling well and that’s a huge cause for celebration so do celebrate if you can. Value each day that you’re feeling well and try to make the most of it. It does help if you can take things a day at a time. That doesn’t mean not planning for the future. It  can mean doing what you need to do today that will help tomorrow be better.

I think there is some value in doing the “death admin”. If you haven’t already made made a will, then now it’s a good time to do it. If you have a mortgage life insurance, you might find that they pay out. Mine did. It was a huge relief to have the mortgage out of the way.You could also look at applying for personal Independence payment if you haven’t already done this. Somehow getting my life in order and doing the paperwork was, for me, almost a comfort. When the going gets tough, the tough get administrating.

I whittered on quite enough. I hope this is helpful. There’s always someone here in this select group with an ear to listen and a shoulder to lean on. Don’t be a stranger 

xx

Hi Deb1E  Welcome to this amazing group! As usual Daloni & Ellie have said it all! There are lots of us here who are past our "sell by" dates and that it because our oncologists have found a Trial Drug (that's me) Chemo (that's Daloni) RT, Immunotherapy or some other treatment plan that worked for us. That's what your oncologist will be looking for, for you. Once you are told "there is nothing else we can do" then you can start to worry a bit then. Please remember no one, not even the professionals can say how long you have to live! I looked at your Profile Page to see if you have any family etc but you haven't filled it in. It's nice to know a bit about the person you are chatting to. Why not look at a few and you'll see what I mean. Just click on any BOLD username.

This is a roller coaster ride you didn't expect, none of us here did either. Yes it does get better, it can slow up or speed round corners but hang on in there and you'll cope. We did, you can too. I'm so sorry it has come at such a bad time, although there is no good time for this news either but the Lockdown doesn't help. I'm sure your Team will get everything necessary to get things sorted and a plan of action in place for you! In the meantime, enjoy every minute of every day and tell the people you love that you love them! Please stay in touch and let us know what's happening!

Hi Deb 1E.....I see you’ve already had some great comments, from these amazing people.....they have all helped and supported me during all the difficult highs and lows. I’ve been living with incurable cancer for about 4 years now, and yes I still have really bad days, we all do, but when I do I’ve learnt to just accept them, draw the curtains and have a duvet day.....the next day you can pick yourself up and it does help.  One thing I’ll add to all the other comments, don’t stop planning.....I made a bucket list of the 10 things in life I wanted to do most and am having a great time working my way through these, planning them and sharing them with loved ones......it’s all about making great memories and for me helped me focus on how lucky I was to be able to have a chance to fulfil my dreams......

Good luck on your journey and we are all here to help with that x

Hi Deb1E 

So sorry to meet you in these circumstances, I'm sure you'll find plenty of support here.

I can relate to the shock of your incurable diagnosis. We were celebrating good news and a good prognosis after completing treatment for a recurrence of breast cancer when a scan for something thought to be unrelated revealed a brain tumour and wide spread bone metastasis just 2 weeks later. I can't imagine getting that information over the phone.

I also looked and felt well which made it seem even more unreal, although it certainly helped my family.

That was 2 years ago and yes, it does get better although as says it does take time and consistent effort. 

Having a treatment plan is a big help even though it's daunting at first, especially in these circumstances.

I also found dealing with some of the formalities helpful as it stopped me from fretting about things and left me free to get on with finding a way to live with this new normal.

Thinking about what was most important to me and having things to look forward to helped. We all need that more than ever at the moment.

Wishing you the very best of luck that your chemo will be manageable and keep you as well as possible for as long as possible.

xx

HI raretez

I did ask the Consultant whether we were talking months or years but she wouldn't be drawn other than to say may be not years plural but as everybody responds differently to treatment so it was a difficult question to answer... I must admit I felt my world had caved selfish I know as there are people out there suffering more than me.

I was anxious about joining this forum but I am so glad that I did for the first time I feel at home if that makes sense - don't get me wrong my family are supportive and I love them to bits but they don't quite get it x

HI Daloni

It is nice to meet you too circumstances apart.  I am going from positive to negative to downright despondent and poor me at the moment.  I can burst into tears at the drop of a hat... which is made because I feel better than I have done for ages.  I have started the "death admin" I find I cope better if I have a plan so I have started de-cluttering (which I should have done a long time ago but I am a bit of a hoarder) and my draft Will is sat on the table in front of me still in the envelope.  I saw a solicitor last year when I was first diagnosed but then when I got NED in January just ignored it.  Now it's in my liver/lungs need to get on with it. 

My family don't want to discuss anything to do with death/dying etc w me and think this is all a bit morbid and unnecessary but I don't think they realise it is a different ballgame to last year when the whole aim of treatment was to cure and stats were good and the original tumour has gone and not returned.

I am not sure what benefits I can get as I am self-employed so still struggling to work and get some money in the Bank but will have to stop once chemo starts - last year I managed to keep working although had to do so when I felt I could - this year consultant says I will not be well enough to work.

x

Hi Annette

I have looked at some profiles and filled in my profile page I am married w 3 children youngest is 21 in October and at home others have moved out.  The youngest is a stand up comedian and until covid-19 was making quite an impression on the industry obviously all gigs etc now gone but he does manage to find comedy in the strangest places even my illness - he entertained the radiotherapy waiting room several times last year when I had treatment!

I am quite down at the moment being in lockdown doesn't help as I had to tell my family on the telephone...  I will be happier once I have a date to start treatment again.

I will keep in touch. x

ps.  like the saying my friend used something similar as the basis of a sermon she gave a while ago but it ended slightly differently ... something like today is a gift that is why it is called the present.