At what point do you see improvements?

Hi Tilly,

He will improve, but it will be slowly. How slowly? Figure on 6 months to get 95% there, close enough to normal to be allowed to drive again, more like a year before the perfectionist in him says this is as close to 100% as it gets. All give or take a month or two - depends how well he handles it. As the saying goes, your mileage may vary.

Treatment for the brain met will have initial side effects. The immunotherapy will have ongoing side effects. Right now he's being hit with both at the same time - a real double-whammy. Only 2 doses of immunotherapy in? Early days...

What was I? T4 N2 M1c non-small cell adenocarcinoma, Pembrolizumab monotherapy – 81 cycles, left brain metastasis surgically resected, Right uniportal VATS lower lobectomy. The worst bit really was after they messed with my brain I looked normal and basic functionality was all there but I was NOT OK. The brain rewires itself, healing happens, normality comes back but it takes TIME. Do not give up hope, rather take it for granted that he'll be back one day (but not this week.)

kind regards
Steve

Thank you Steve  i just look at him & want to cry. I just wish he could talk to someone like you!.

Also is bringing back memories of my sister & my Mum & its like reliving that time. I feel like my hearts being ripped out, but I have to hide it.

thank you for your kind words, much appreciated.

X

Hi Tillyboo  treatment is hard, and the best way for your body to recover is sleep. Your husband’s body is going through a lot at the moment, that is a lot of different treatments he’s had. Everyone reacts differently to treatment and to the disease, but in most cases it is a year. The first year for me was the toughest for sure. I had surgery then radiotherapy, the radiotherapy knocked me out for a good 6 months, and then I had a lot of adjustment to do on my hormone treatment. 

Do you think your husband would talk to a MacMillan buddy? This is someone who would call your husband once a week for 6 weeks to talk about what is happening and how he is feeling. If you call the MacMillan line on 0808 808 00 00 they could arrange that for you. 

I've tried ti get him to talk to someone at Macmillan, but he wont. Its like its all real if hr talks about it. I have begged him to cobtqct Macmillan/Maggies to speak to someone whos been in his shoes, but he wont.

Its 9.15am on Sunday & I'm sobbing & writing this, as I cant bare another day watching.

Everything in my home from otamorph to the steel hospital walking cane, is just reminding me of my sister. I had to hide the oramorph box yesterday.

I thought I was coping, bit I'm not & I know its him that as this & I have no rights to feel like this..I just dont know how else to help him.

But I just dont see him anymore, I see my sister. Which probably sounds selfish & mad.

hi there,

It must be so hard on you to have to support him. But for your own sanity, stand back, and observe.  Then take yourself away from the situation and go for a walk, go read somewhere, visit a neighbour/friend just to take you away from the house, anything other than upset yourself. Leave him to do what he has to do . He sounds old school and men of a certain age won't talk about feelings, its not what their used used to.  His body is mending and repairing, he is tired, worn out, feeling utterly ill right now, but slowly, very slowly he will mend. Us women are so strong, bear with him for now, and try not to be so upset, i know its hard to do, but i can honestly say from the heart cancer patients sometimes need to be left to their thoughts. He will come to terms with this in time, but you must be kind to yourself stand back. As a cancer patient myself i do know their are times you need to be alone, and sometimes platitudes etc drive you insane.  He will came back to you eventually, given time.  Please try not to see your sister in this, this is your husband and your journey in this matter, a partner you have probably had for years. Remember you are important in this too, look after yourself  x

 Tillyboo  ella  has given you some really good advice, but please do not think that this does not effect you or your feeling are not valid! Of course this will affect you just as much as your husband, if not more! I can tell you from experience that watching my mum with cancer was much much harder than having it myself. 

Please remember maggies and MacMillan are there to support you as well. Even if you just leave hubby for an hour or so and pop into maggies for a coffee you will feel so much better x 

It has taken me a over a year I had a lobectomy mid 2023 then 4 rounds of chemo cancer then travelled to my brain had 2 tumours zapped January 24 a month later back in hospital with pneumonia and only now just starting to feel normal, so really it's been 2 years from the start of my journey. 

Thanks for all your replies. 

To make matters worse one of the nurses mentioned to him a few days ago "hospice & sending someone for pain management" re the pain from the Zometa, which did calm down. But unfortunately saying hospice to my husband as now made him think end of life. I explained to the nurse about his anxiety & it all should be in his notes, how to word things with him, she apologised to me & said it was meant as pain help not end of life. So him hearing hospice as knocked him sick & as not helped his situation. He's even rung his sister to say he needs a hospice. So on top of everything I'm now trying to explain to his sister, it was meant as pain relief not end care. The nurse said to me she didnt want calls daily about pain relief & Zometa side effects, when hospice can sort it, when all we were trying to find out why he was told Zometa would help the pain, instead of him pacing all nite long as he couldnt cope with the pain, didnt know if it was an adverse reaction or normal. So went from slight pain with cocodamol, to Zometa unbearable pain given Oramorph that knocked him out for 15 hrs.

So I think a mix of immunotherapy, a brain cyberknife radiotherapy, a spinal radiotherapy & Zometa, all in 6 weeks & to then be told by a nurse we can send a hospice nurse to you as just about tipped the cart!

Hes eating a bit better, a bit sleeply but literally as no interest in life. Spending 23 hrs in 4 walls isnt good for anyone, but I think side effects & the hospice thing as put the fear of god into him & made things worse.

Im also ill, on a 2 week cancer pathway yet again, amongst other health issues I've just about had enough. Worn out & pain doesnt even cover how I feel....I've literally had enough.

Once again thanks for all your comments, as I have no one I can turn to x

This  cancer  journey can be  harder for some than others. Some hurdles are bigger and harder to jump.  i wish it could be easier for you and your husband. But be in no doubt we are all here on this site if only for you to converse with us. x

Thank you x