Hello everybody

Hi sunflowers

I notice that you hadn't received any replies and although my situation isn't exactly the same I wanted to just say hello.... Im so sorry to hear what you're going through it is indeed a long and difficult road not only for your husband but for you. I am caring for my fiance who has had surgery for male Breast cancer and we have his follow up scans next week to ascertain the nature of suspicious Lesions in his lungs and liver.....and then possibly chemotherapy Since Christmas my life has turned upside down and an emotional rollercoaster ....and although our other halves are suffering different types of the evil C...M I'm sure our range of feelings overlap..... Fear dread tiredness loneliness and just wishing we had our old life back. I Truly hope someone can give you some specific information but for now you are not alone and we are all here for each other. Hugs Laura 

Hi,

My situation is different to both of yours - my partner had his bladder and prostate removed a few weeks ago and now has a permanent urostomy bag - but the feelings you have described are exactly how I am feeling. The fear, dread, loneliness and yearning for our old life are now my default state and it is not easy. Thank you for putting it into words so eloquently - it helps to know I am not alone.

Sending love to you all

Hi Tinsel, thank you for your hello, a simple thing that can mean so much to the person receiving it. I have been reading posts on here for a while now but only recently joined. I have read quite a few of your previous posts in regards to your fiance, it is so hard waiting for scan results at times, we are used to it now - what a thing to have get used to. Yes it is an emotional roller coaster but we are at the stage now that we accept that the life we had together and as a family has changed for ever but IT IS still a life. We are quite positive and optimistic people so although we know his prognosis is very poor (his cancer incurable) and his quality of life changed forever we try to always focus on the positive (however small)  and are just trying to get on with and enjoy the life we currently have. I have had some answers to my question as posted in other groups also. Again a hello to you and I hope you are having a lovely day.

You are definitely not alone virgolady, I've no doubt that everyone on the community has had those thoughts at some time and will in times to come and agree it is not easy.

Virgolady and sunflowers thank you both its makes such a huge difference when people like you both take the time to care enough to reply. My thoughts and thanks to you both and if I can ever help even in the smallest way I'm here xxx

Hi Sunflower

My OH has neuroendocrine carcinoma and had a large brain tumour removed last year.

This type of tumour is not known for having a primary in the brain but in the absence of any evidence elsewhere that is how they are treating it.

He had Carboplatin and Etoposide ending in January and has just finished 30 cycling lessons radiotherapy.

We haven't had the Nivomulab but I did a quick search and there are people in the Lung Cancer forum on it.

My OH's type of cancer is usually found as secondary in brain, coming from elsewhere. He never had a chance of a PET scan so if there is a primary lurking elsewhere we are yet to find out. We too are under Head and Neck team.  

I have been off work for 6 months, we won't have a scan for 3 months, a long wait.

I can't decide if I should try to venture back to some part-time work, as treatment is over for now. Some days I am am scared it is not over and the next STAGE is looming, others I think move on it could be years before it rears its ugly head again.

 It has been a difficult year but he is much better now than he was last year, so hopefully this new treatment will be of great help for your other half. Looks like it is well liked by patients for few side affects, it's not long been licensed in UK by the look of it.

Good luck x

Thank you Tinsel and vice versa to you.

Hi Birdfeeder I'm glad to read that your OH is alot better since finishing his treatment and in comparison to last year. Although my OH did have a PET scan it did not reveal the primary, due to the spread of the cancer the consultants suspician is it originated in the neck and on that basis after a short break from completing his chemo was very lucky to be offered nivolumab. So far little side effects and already noticing some benefits. Yes like you a difficult year last year but now over the shock of the situation we are in. I went from full time to part time work, this was one of the best decisions I made and plan on working for as long as possible. Although money isn't a major issue at the moment for us I think its important for us  to have a little bit of normality for us and our children plus I actually enjoy my work and my supportive workplace. I know it's easier said than done but try and enjoy your life at the moment and not worry too much about what you may have to come. 

Thanks Sunflower, your right, it's my biggest challenge, not looking forward with fear. I succeed most of the time though. 

His sister died 2 years ago, we were there. We were meant to be joining her for a respite holiday at the hospice, but she took a dramatic turn for the worst on the day we arrived. The following 10 days were very peaceful for her and we were all allowed to stay. As an end of life, you couldn't have asked for more.  

I guess that and the fact that his dad died at 44 from a brain tumour too, sometimes impacts my thoughts. Of course,  it's never voiced beyond this forum. So it's said here then let it go. 

The positives are that treatments do work, with less and less side affects. Our experience of the NHS has been great. We have felt supported along the way. 

We have also kept each other going, he is my rock as much as I am his. 

I think part-time work now that the treatment is over is a great idea. Then we can get out there and enjoy life a little more too. 

As I often say to others, no point in worrying about what you don't know yet. I think that works most of the time :) 

Thanks for the supportive reply x

Hi. I have just read your post and hoping that all is well. My OH waiting on RC and I am so scared.