New and a little lost in limbo

Hi Leonie4410, it's hard at first to except our diagnosis. I cried screamed, sulked. I kept waking up every morning and gradually  started to live for today.  Why get out of your control syndrome? It's still uour life, you can control who you tell, who you talk to about your illness, what you want to do, the old bucket list. Keep posting you'll get lots of support and humour and various conversations that can get silly or serious. Sending hugs X

Hi Leonie, I have welcomed you already on a different post, but just wanted to add that everyone is welcome here, no matter what part of the world we are from. Treatments are sometime different in other countries to how they are here in the UK, but we all try to support each other as best we can.

I am not surprised you are feeling the way you are at the moment. Your whole world has been turned on its side, by cancer and by having your career end. I lost my job because of my cancer, and it took me a while to adjust to my new way of life. I went through what I can only describe as a state of mourning of my old life before cancer.  

I think at the moment you should just take one day at a time. If you are having a down day, that's fine, it doesn't mean you will feel this way tomorrow. It is OK to not feel OK, and there is no pressure to feel otherwise. 

I hope you find the forum helpful, there is always someone here to chat too x 

Hi Leonie, having an incurable diagnosis is such a shock, losing your focus on work and having a forshortened yet unknowable outlook, it is difficult to come to terms with it all. Some days a 'philosophical' outlook will help, other days may be for crying and raging. Both have their place, and this forum is a good place to express your feelings, positive, negative, uncertain and confused, and to share your good days and your bad days. I hope that you have plenty of time to join in and share.

Best wishes 

Hi and welcome to forum, sorry you have a reason to be here.

I understand some of what you are saying, I worked in IT I am super logical can solve complex puzzles………. But emotions  they are a new one on me.

with regards to work I was deemed incurable aged 54 and sat and looked at my finances, assets etc and worked out how I could retire and ensure my wife was financially secure for the rest of her days. I feel very lucky that the logical part of my brain had help me achieve this over the years.

I then decided cancer would not rob me of my “retirement “ so I retired, it may be a short retirement by I retired before I died so my life stages are in the logical order.

The doctors I have dealt with , some have been vague because they don’t have a definitive answer others because they are trying to get as much information over too you before the emotions kick in and you stop hearing them.  I tell all new docs/ consultants/professors just tell me the facts, tell me the vague bits then tell me what we don’t know. I am able to default to logic and analyse that information in my head too ask questions.

then I have a damn good cry when they’ve gone if the news isn’t good.

after 2.5yrs I’m getting a small understanding of the emotions but I am prone to crying for no reason in the shower 

Thanks. I read in your profile that you are going on a cruise? Where to?

I also decided after being told that I should not delay anything to take the Norway Hurtigruten tour up to the north cap. So I did (together with my sister) and it was absolutely great. We didn't see the northern lights but the entire experience was much too good to claim anything. Before I had been totally out of spirits but now I slowly recover and it's a tiny bit easier to cope with my diagnosis and all the changes.

Thanks and reading your profile grounds me again. It is still unbelievable for me how many people suffer from cancer in all kind of forms.

After I had my extremely rare cancer nod on my right abdomen wall - not really a metastase but a so called carry on primary cancer (1 year after my 1st) all kinds of tests have been performed, blood tests with next generation sequencing and detailed analysis in pathology. To cope with this I was very keen to learn about the latest developments in biochemistry (years ago I learnt this in the University). Then I had plenty of questions to discuss with the various specialists. From this I basically realised that their own knowledge is as everywhere. Not precise and not many ideas what could develop  but which I never expected anyway. Therefore I believe that my cancer now is also pretty new for them and since my results don't fit in the current statistics I remain an interesting case. 

Positive is that I get very good treatment here and they know me in all different disciplines. I cannot go back to my original home town because of my complex medical history - therefore I will stay in Switzerland .

Seeing the Northern Lights is something I've always wanted to do, but not yet managed. I was going to try and get to Canada to do this as they say you have a better chance.  I'm glad to hear you had a lovely trip. Rainie x

We flew to Barbados and had a 14 day cruise around the Caribbean, it was great fun, not our usual sort of holiday, but lovely to do something different.

Rare cancers are a bugger, I was told that my outlook was very poor, but I am doing much better than expected. 

Hi Leonie, A warm welcome although I know you'd rather not be here, just like the rest of us here. As others have said, once you join the Community, you have like minded people to talk to as it is very difficult for family and friends to understand all the emotions on this rollercoaster! Most of us who have been here a while and lived passed our expected "sell by"date know exactly what you are going through and will try to help, if we think we can. I'm so pleased Pembro is working its magic for you and I'm sure you will probably by this time be starting to get into a routine with your three weekly treatment.

Please hang in there, things do improve but not as fast as you'd like. One day at a time is the best way to be until you can accept that this is going to be your "new normal" from now on and as difficult as it is, try not to think of the way things were in the past, you will only make things harder in the present! Please read the saying at the end of my post, it is what I try to live by these days!

Thanks a lot, I really try to adjust to a new routine and keep me busy with various projects. I am very grateful for such a forum and be able to get in touch with fellows in this disease.

However I could not find your "saying", where do I have to look?