Hello and coping advice

Hello Tdas. I'm so sorry that you have had to join us - and be here on the forum that nobody really wants to join. But now you are here you will find advice, support, kindness and love from all on here. Also a very necessary humour from time to time. Firstly, as others will also testify, consultants don't know everything. They can only guess at how fast things might progress and how long a person has. You will find people on here who are long past their 'sell-by date' as we call it . Some are years past it and new treatments come along all the time.

So when you feel low, come on here and sound off as we will understand. Try to get all the practical things done and out of the way - such as the legal stuff, writing the will and putting all your affairs in order. Concentrate on that initially and it will help your peace of mind that you will leave everything in good order for your family. Then forget about it. Try and put it in a box. 

You might be the sort of person who needs to know all about your cancer. I'm one of these, as are others, but not everybody wants or needs to know the details of everything. Write down all your questions so that anxiety doesn't make you forget. It's a journey that you are on and it takes a while to get to grips with things. The Macmillan website is full of info. Don't forget to write up the details about yourself on your profile as you will get tailored information. Also, the nurse councillors are very good when you want to talk over specifics.

Please keep posting and letting us know how you are getting on. You have found friends here. All the very best of luck to you.  Rainie x

Hi Tdas welcome to the group, but I am so sorry you have found yourself here. This is the one group you really didn't want to join, but now you have you will be glad you did. Here is the only place you can come and talk to people who really do understand what you are going through.  

Being told you have cancer is bad enough, but to be told that you are incurable is the most terrifying thing you will ever hear.  Telling my children was the hardest thing I have ever had to do. My girls were 13 and 17 at the time. It is a day I will never forget. My youngest daughter had some counselling which was organised by my Macmillan lung nurse. She had the sessions in the Macmillan centre which we have in our local hospital.  Do you have anything like that near you? Or a Maggies centre. They are very good if you do decide to have counselling. If not you can speak to your GP to arrange this for you, or call the Macmillan support line on 0808 808 00 00. They are available 7 days a week from 8am until 8pm. 

My cancer is different to yours, but we are a similar age. Some hope? I have been on treatment and stable now for 7 years. If you click on my profile picture it will take you to my profile where you can read my journey.  There are a few of us here who are lucky enough to be in the stable Mable category. Cancer changes your life, and it took me a long time to grieve for my old life, but I now have my new normal, and life on treatment can be good xx 

Hi Rainieday

Thankyou so much for replying to me so quickly. It was very comforting although I did cry! Pretty much crying at everything at the moment. I am not the type to post at all and don't use any social media but I really felt I needed to do something and I'm glad I did. Thankyou for your encouraging words. 

Hi Chelle

Thankyou so much for sharing your encouraging story with me. That really has made me feel a ray of hope. I think there is a Macmillan centre in my hospital and I will call them and enquire about the counselling. I'm hoping it might give me some strategies to cope with the terribly bleak feelings I'm having. Thankyou for your reply. 

Hi Tdas welcome to our group of fantastic people who will be there to support you whenever you need us I see that you are like me about posting etc i never had done anything like this before either until I came on here but it was the best thing I have done xxxx

Welcome to the forum sorry you have a need to be here.  The initial phase of being told you are incurable is scary, baffling, terrifying and confusing amounts to other things. I was told I was terminal and thought that meant I had weeks left. Turns out I’m incurable and 2.5 yrs on I’m still here still enjoying life and with manageable side effects.  I went from laughing and joking to crying uncontrollably and back again in minutes on many occasions. It does settle a bit and getting a plan together with your consultant will help.   This forum has been a huge help to me because everyone here is in the same storm and gets how it effects you. 

Thankyou all for your replies. It really does help to hear that other peoples emotions were as frazzled as mine. It is the most unbelievably stressful thing I could ever imagine and I was feeling very much like I was sent home from hospital after a 20 minute chat for to deal with the reality of it myself. You’ve all already been a real help and I’m sure I will be leaning on you all on a regular basis. Thankyou. 

Hi Tdas. That's a miserable story you have there. Try to pick the best bits of where you are. Incurable but treatable isn't too bad a place to be. I can tell you without doubt we have all howled at the moon, wiiped our tears away and howled some more. Why wouldn't you be anxious, upset and cry. Better out than in I believe. 

I also don't believe you will suffer hourly, daily or weekly, you will come to terms with it. One day you will realise you havnt thought about cancer for an hour, that will improve daily.

Of course we all believe it is worse for the kids but they are not all snowflakes and will want to be on your team.let them help you if you can. There's nothing like all having a sob and a cuddle. 

Everyone's cancer is a bit of a mystery to consultants but remember, while they are treating you,  plenty of their colleagues are working on the next treatments,  new ones at least yearly and trials. quite a lot on your side.

So, things to look forwards to around the corner.

Also loads of proper sensible people on here who would love to help with support and advice.  We are all in this together, we know exactly how you feel.

Xxx

Hi,

I was in a similar position to you a year ago; 55 years old, duodenal tumour with regional spread, inoperable,  told I had a year, perhaps longer with response to treatment. I had six rounds of palliative chemotherapy therapy and the spread is now not obvious on scans, the original tumour is barely visible. I am happy to be in the Stable Mabel club.

Physically and emotionally it has been a roller coater of a year. My kids are older than yours (30, 28, 25) but was difficult telling them, with encouragement from my husband I have been very open with them at every stage, I think this is working for us all, I know not everyone feels the same about sharing. 

This group has been an absolute lifeline, Welcome!

Re counselling I am only just starting to consider it, though I did get 6 month's support from a Macmillan funded online personal trainer who did pilates style exercises with me, and listened when I wanted to talk.

Best wishes

Hi 

Thankyou for your encouraging stories - I really was feeling like there was no hope but this has made me feel a little more positive. I have just spoken to a nurse at my local mcmillan centre who was lovely and is going to refer me on to counselling and also talked about other things on at the centre. When I feel a little stronger I will try them. At the moment I just feel like hiding away with my family, but I guess as I've only known my diagnosis for a few days, that's ok.

I have my first appointment with the oncologist tomorrow who I have been told 'does not mince his words'. I'm trying to prepare myself for another blow but am also aware that pre-empting these things is not helpful. 

Wish me luck everyone and thankyou again - I slept better last night and I'm sure reading your messages helped to calm me a little. 

xx