New Diagnosis

Hi Cath

Welcome to the Incurables group that you never in your life thought you would join, and to be honest, I would far rather wish I'd met you elsewhere.

You're right, everything going along fine and then bang! The bolt from the blue has struck. You're so young, but perhaps that's a great advantage for you, you have that inner strength. Your emotions will be running riot. We've all been there if that's any consolation.

You may want to contact the MacMillan helpline for advice such as finance or even counselling. I had counselling which was quite emotional, I was 57 when I was diagnosed and it felt like someone had chucked a bomb into my future plans. I never thought I would see my 60th birthday but here I am, I'll be 62 on the 27th of this month. You'll find there are many others here who are 5 or more years past their sell by date. Cath, I hope you'll be one of those. 

Good luck with your treatment and keep us posted, this group is a centre for the best support you can have. There are so many lovely people here.

Tvman x

Hello Cath

It is overwhelming at first but it does get better with time, you just find that it is all consuming and then you sort of get used to it. Once you know the worst (or best) you will get a treatment plan and you feel better able to cope. As a start can you designate someone close to you to be the point of contact? Do a mass text saying that you are grateful for peoples concern but you are taking some time off to be with your family and tell them to direct their enquiries to whoever and then they can take over the updating. I have a facebook messenger group where I put new news so I only have to repeat it once. Tell them that you will contact them if you think of how they can help. 

It is a rocky road of ups and downs and many tears but you will find yourself coping most of the time will occasional emotional breakdowns, I just cry it out and then feel better and get up the next day and carry on. You don't have to be brave the whole time although Covid 19 makes it a bad time to be trapped at home when family and friends can't give you alone time to let it out. It will get better and I also know of many people who go on for many years having active treatment. I hope to be one of them myself. Even people who are considered 'incurable' can go on to have a good response and become operable depending on their response to treatment.

All is not lost, my very best wishes to you, there is a lot of support in this group.

Cath, I feel so sorry for you reading about what has happened. When I was diagnosed I worried every minute of the day and everytime I woke up. When I was having chemo I asked the friendly lady who was plugged in next to me if this was normal behaviour. She said, of course, you have only just found out. She said I would get used to it. I did and I think everyone does, we are all good at coping, that's what we do. I was told 8 months to a year. Nearly three years later here I am. Of course I still think about having cancer but that's because of regular blood tests and injections always remind you. I believe Macmillan can advise on what to tell your children, my wife and I didn't have any so I cannot advise on that. It is a million times harder for you with the lockdown, when that's over you will, I am sure, bounce back to some degree. Here's hoping for it all to go your way.

Thank you so much for your reply. It’s great that you continue to defy the odds. Do you still have chemo?

No, not at present, I had 6 lots of chemo which was not awful. Its doable is what people say and I agree with that. Then I had a fair bit of radiotherapy, it was a clinical trial that I volunteered to be part of. My oncologist says he has plenty more tricks up his sleeve to deal with any future difficulties and I bet yours has too.

You WILL get through it and it will get easier, there are plenty of people on this forum who will have something similar to you and will offer help and support. 

Thank you for sharing. I hope you’re right. Our hospital is big on research and trials so I guess you never know. I feel at this stage I need to plan for the worst so I’m covered and organised and then I can fight the bastard thing!

Hi Somerset I am sorry for your news.I was diagnosed in May 2019 with breast cancer recurrence in my lungs,liver and kidney.I didnt ask for the prognosis and when I was told it was incurable I got so upset I nearly went to hysteria so I wasnt told any life expectancy and I dont want to know because one never know.I am only 42 and we were planning a baby before this now its all over.Just wanted to say I am having weekly chemo with some breaks every 3 months and its working.The January scan was showing no tumor in my kidney or liver and one in my breast shrunk almost to nothing and my lung nodules are either gone or shrunk too.I keep all the scan results so I am always comparing and when I get upset about my situation sometimes I look at them and saying Its still working and I am still this.Unfortunately I dont know if will carry on with chemo or not because lots of people having their treatment cancelled too.I hope the doctor tell me in two weeks time I can carry on.If i will have choice I want to carry on chemo despite of the virus risk.And hoping later have mastectomy because all of my troubles started in my breast.I am feeling fine with the chemo just really depressed now and worried they will stop it.

So I just wanted to give some positivity although I feel bit down at the moment.

Oh my god. You are amazing. I haven’t been able to cry for two weeks and I have tears in my eyes. What an absolute hero. I am so, so sorry about you not having your babies. Who knows what your future might hold though, what amazing results. Please please keep me posted. I have been told in younger women chemo can have amazing results. Thank you x god I hope your news keeps getting better x

Hi Somerset I didnt meant to make you cry I apologize.I hope your appointment will be ok and your team really good.Unfortunately i am fighting this without too much support.First they didnt know if it was a primary lung cancer or breast cancer returning and spread.Anyway even they say to you the prognosis don't stick to it too much.Treatments can do sometimes miracles.

If you will have chemo its true its doable but you have to look after yourself.Eat well and healthy and drink fluids lot.2 years ago I have EC+Paclitaxel.I havent been sick once.Now I am on weekly Paclitaxel and the same no sickness or diarrhoea.I am feeling ok,except my anxiety and nail discoloration I am feeling like I dont have chemo.

Cath, just a quick couple of things I should have said, there is a particular section on this forum for breast cancer suffers, you can probably search and find it that way.

Secondly of course you are going to get loads of email from friends and family who are shocked and devastated at hearing you have cancer. They have seen the adverts on telly and of course they have heard horrific stories.  

The only people who know what it is like are you and your thousands of new friend on here.

All you need to hear is a bit of sympathiy and an offer of help when you need it. You will be able to let them know this when the dust has settled.

I am leaving now in case I convince myself I am a doctor and psychiatrist!,