New around here...

Hi Hanna,I am so sorry about your diagnosis.I thought I will give you some positivity.I am 42 Last year in May i was diagnosed with breast cancer recurrence in my lungs liver and kidney.In August started weekly chemo - Paclitaxel.Iwasnt given any prognosis and have never asked.This January had a CT scan which was showing no sign of tumors in kidney and liver,lung nodules shrinking and the lump in my breast nearly untouchable.Nobody can exactly say to you how many years or days or months you arw going to live.Some ladies live with stage 4 cancer many years.This virus stuff is making me mentally stressed because i am not sure if i will carry on with treatment or not.I will know it on Wednesday.

Just wanted to say never give up hope.I am trying to.I am nearly 1 year from diagnosis.

Take care

Oh Hanna  

I'm so, so sorry to hear this, you must still be in shock after such devastating news, and completely  heartbroken. You're right, it is a cruel blow at such a precious time.

The current situation makes it even worse, I can only imagine how lonely you must feel.

Have you seen the group dedicated for those diagnosed at a young age? It might help to hear from other young mums too, as terrible as that sounds.

I'm sure you had your hopes pinned on good news from the scan. My Oncologist always says scans are only one of the indicators of how things are going and I've certainly found that to be the case.

Many of us have found that there's a transitional period between learning to live with incurable cancer and the feeling of dying from it. You may not be cured but the treatment should keep you as well as possible for as long as possible, there are members of this group who were diagnosed as 'terminal' many years ago. Some have benefitted from clinical trials, new advances are being made although I'm sure that's not much consolation at the moment.

This group is a great source of support and practical advice. Sending you the very best of love and luck for your treatment.

xx

Dear Hanna

So sorry that you find yourself here. I hope you will find some comfort in this space. It's a particularly difficult time just now.

Please take care, xx

Hi hanna you will find loads of support and advice on here it's a total lifeline for me nobody gets ignored or left behind when you need us you can waffle on as much as you want to and we will get back to you day or night we are all here for you xxx

Hi  Hi Hanna and welcome to the Group you probably don't want to be in but hopefully you will soon feel better that you joined! I think the name of the group is spot on Living with Incurable Cancer is what we all here are trying to do. I never use the word terminal, I use incurable and once you've been here a while I hope it will give you some comfort that one word is slowly but surely becoming obsolete and the word is "terminal"! I was given 5-7 months to live when I was told I had stage4 cancer. We had only just had our first grandchild and thought I wouldn't see her growing up, going to school etc similar to you looking at your son and thinking about what you will "Miss"!  I'm so sorry you are so young to cope with this but needs must and you will do it!

Now if I tell you I'm well past my sell by date along with many others here who thought their life was almost over. The g/child I mentioned is now 8 years old and we have a further two g/children 1 aged 5 the other week, the other will be 6 in August! My diagnosis was in 2013 and I wasted months thinking about dying, getting things in order etc, seeing a funeral and thinking I'm next!!! Hanna, I don't want you to do the same! Live every day and enjoy your son. Things at the moment will make this a bit more difficult but I'm sure you can do it! Come on here and talk to others who KNOW how you feel. We don't want to worry our loved ones more than we have to, so here is where we can really say how we feel. As has been said, we are here to support the others on this roller coaster ride and I hope in a while you will feel less overawed and more positive day bŷ day!

Hi Hanna 

It is a pleasure to meet you, although I wish it was under different circumstances. I read your post a few days ago and felt so sad for you and your family. I’ve been thinking about you and wondering what I could say that could possibly feel helpful to you. 

I think others here have already said most of what I’d like to say. I have one thing to add. Don’t assume you won’t get your scan. My routine scans have continued in this crisis and so have others. Our experiences have been of empty waiting rooms and shorter than usual waiting times in scrupulously clean hospitals. Both you and your oncologist will want to know the results so you can have both the reassurance (scans often don’t show growth until some time after markers start rising) and you can get a treatment plan for next steps. 

Beyond that, all I can say is stay in the day and try to enjoy the time with your baby rather than living in the future of imagining your baby and partner without you. You are most unlikely to get to the end of this and think “I wish I’d spent more time being miserable”. How much better to look back and think “I’m glad I made the most of the time I had”. 

I notice you say partner and not husband. It’s none of my business but you might want to take some advice about any paperwork you might need to do to make your partner and baby’s life easier after your death. For example, there are some financially significant benefits for bereaved spouses. The  Macmillan helpline has financial advisers who might be able to help. 

Hmmm. It turns out I had more than one thing to say. I’ll stop now. Please, Hanna, don’t be a stranger. There’s always someone here to listen. There’s no such thing as a silly question as whatever is bothering you, someone will have some experience to share. 

With love and hugs 

xxx

Dear Hanna, 

I'm Clare, good to meet you. I'm 40 and was diagnosed at 37 with endometrial cancer that I believed was being treated until I was presented with an incurable diagnosis 21 months ago. Huge shock and I'm sorry you too are in this horrible boat. 

I have a young family too although not as young as yours. It's a lot to deal with. One day at a time. 

I've been receiving treatment which has actually put me into remission for now so please don't rush to the worst case scenario just yet, I'm outliving my predicted expiry date by well over a year now. I hope there are some options you can explore too. 

I just wanted to say welcome. Am here if you need anything. 

Hi all,

Thank you so much to each and everyone of you that have taken time to send me a response. 

It’s still hard and I find it hard to come onto this site, maybe I need to change that and come on more. 

I got my scan after 6.... I was told there is no sign of any new disease and there is a slight reduction to my tumours. Good news I guess. 

I’ve struggled with neuropathy recently and I’ve just found out that at tomorrows session - number 9 - I won’t be having the oxaliplatin, just the 5fu. I’m not sure what this means now, and I’m slightly scared. Can anyone reassure me? 

Hope you are all well

Han x

Hello Hanna

I have neuropathy and sometimes drugs are reduced or stopped - I think it's a precaution. But check with the chemo nurses if you are concerned.

Chemo is not easy, you have been brave

Xx