Battling the storm

I’m so sorry to hear about your husband and you’re  both young this must be so hard to process and frightening

Although I’m older when I was going through my tests my husband seemed to change. He seemed very anxious and he wasn’t recovering from his knee replacement 

Aug 4th I had my LAR. September 26th my husband diagnosed with Parkinson’s!

Sometimes I get panicky it’s frightening to think of our future. But I am trying to concentrate on what we can do not what we can’t and I’m trying to make the most of just the little things. But it’s not easy

If it helps to chat here it’s a good place for support.

MacMillan have been so supportive with us, they’ve arranged for me to have counselling and pointed me in the right direction for support with the Parkinson’s  

You can phone them for advice 

My GP also gave me some tablets which seem to be really helping 

sending you a big hug 

https://community.macmillan.org.uk/cancer_experiences/supporting-someone-with-incurable-cancer-forum

Hi KarenR

Welcome to the forum . I had written a big long post but managed to delete it !

I have linked in a forum above that you might be able to draw some strength from . Our helpline staff are available on 0808 808 0000 and they might be able to signpost you to some local support . They will also chat through some of the issues you have raised .

Your post reminded me of my mum’s very wise surgeon who said around the two year mark even people with the most robust defences grow weary . Continuous treatment is tough , but hopefully this will also knock it back down again . My mum had a small reduction in one agent that significantly reduced her side effects and gave a better balance to her life . Might be worthwhile speaking to his team again as it made the whole thing manageable and they seemed to strike a better balance as she still go sufficient shrinkage .

Have they considered if other options are available like radiotherapy?

My mum was in active treatment on / off for seven years and whilst it has different dynamics in terms of relationships and I get that , the process of continuous scanning /treatments and emotional rollercoasters really takes it out of you .

Always here for a chat if you need to offload . MP me anytime you like .

Take care ,

Court 

Thank you so much for both your replies, hearing your support is big help already, your advise is invaluable to me and I am so grateful. 

My husband's grade 3 cancer spread to his lungs almost immediately after he was told he had a 1 in 5 chance of it coming back after it had been removed from his bowel.  The continuous treatment is taking its toll, the side effects he has now are different from the first time around and he is tired for longer, we are both hoping that it will indeed do a good job and beat it down again for a while.  Radiotherapy was never an option, I guess it is because its in his lungs. His oncologist has mentioned clinical trails once the current treatment is no longer effective. 

My friends don't like to talk about it, understandably they don't know what to say so tend to avoid me. Family don't want to talk about it because they don't want to face it. So, my isolation is causing a bottle neck which in turn is causing my anxiety and unhappiness at a time when I want our time together to be a good as it can be and to be his rock rather than him being mine (which he has been for 30 years).

Fear is a difficult feeling to breakdown and no matter how hard I try it will not stay in its box.

Thank you both again

Karen

hi KarenR - when I was going through rectal cancer treatment very often I found friends and family just didn't know how to act around me or what to do and so they did nothing and or stayed away. I understand how anxious you must be and how all consuming it can become. I used to focus on getting through each hour day by day. Saying this my bowel cancer hadn't spread. My heart goes out to you and your husband.

You will always have a place here to unpack your feelings . Fear is a horrible emotion but we can listen and reduce the sense of isolation this condition brings with it .

Take care ,

Court