Cant sleep....the mood has changed

Hi Tillyboo.  May I say I'm so, so sorry to hear about what you're both going through and it's heartbreaking to read.  I'm no doctor, but I'd have expressed a darn sight more compassion for your plight than they did.  You should get in touch with your hubby's team and tell them what's happened, as the last thing you both need is to sink into depression.

Don't apologise for your post my lovely, as you need to get all the worries out and you can do that here.  I'll listen anytime you need to offload, although I've got a few issues going on with my OH's health too.  But let's try to look forward rather than back, and fingers crossed these obstacles can begin to get sorted.  Maybe we can become a sounding board for each other through these trying times.

Sending you big hugs xxx

Hi thank you for reply.

I Spoke to my husbands normal onco yesterday morn. Apparently shes still on the trials ward hes on, but she does other trials now & new oncos have joined.

I explained exactly what happened last Thursday, how he went through bloods pre treatment obs etc then into see onco. Had the chat about how things are etc nothing new to report, still then we thought alls good. Then bang her words " your scan results arent good disease as progressed we have to stop immunotherapy". To say we could have hit the floor iscan understatement. All I remembered afterwards was chemo & him being examined & then taken off for his 3 monthly trials tests. At that stage we didnt know what year it was let alone day of the week! Which are some of the questions. Hes on something called STRIKE trial for brain met.

What should have been said was " excellent news re brain, no sign of disease as one hit of cyberknife worked & you will be regularly scanned & should anything change you will have more cyberknife. But the lung mass/lymph node as grown slightly nothing new in the the body, except the one spine met, but no further spread. So because of the slight increase in lung we want to change treatment, as keytruda isnt working for you & want to make sure no further spread". But that wasnt said. I said to his oncologist yesterday the way last weeks meeting was handled was awful & can she make a note of how anxious my husband is about all of this, which shes always been aware of, but obviously no one else is.

The problem is now my husband cant get last weeks words out of his head & even after speaking to his normal onco yesterday to reassure, he still broke down crying yesterday.

So is now dreading Thursday in case its the same onco as last week, dreading future scans & results, basically dreading everything. 

But I dont know if I can request not to see this onco, as we are NHS & not private? 

Having cancers bad enough, but now dreading seeing an oncologist who is supposed to be helping you isnt right.

So I dont know how to deal with this going forward TBH. The Marsden are fantastic nurses transport staff etc so you would expect all oncos to be the same. But this onco I've named Dr Death, on a/c I dont know her name, she did give it but couldnt understand it.

But the moods changed at home, we were both into a routine he was eating etc going out, but in a split second with a few words this doctor as taken us back to when all this hell started & I have no idea what to do

I just read your profile, so pleased for your husband!!

My husbands isnt cureable only treatable. Still no symptoms, no cough, not breathless, a bit of back pain, but thats it. He as osteo arthritis so knee pain us a constant. He had a stroke in 2018 which as left him with a right side weakness.

What onco yesterday said about chemo ( premextred/carboplatin - I thinks the correct spelling) he'll 4 cycles, after 2nd cycle will be scanned to see how things are if ok & tolerated 2 more then maintenance chemo of premextred. I forgot to ask how often & how long for. He also as zometa infusions for bones.

He had a few blips with immunotherapy side affects, but was mostly ok, just a bit tired & nausea. But his anxiety as been bad since diagnosis, so I dont know if the nausea us treatment or anxiety related.

I'm absolutely dreading chemo starting, so many horror stories. 

Hi again Tilly and thank you for your reply also.  Tell you what my love, I'm just going through hubby's care routine, so as I'd like to chat properly I'll get back to you as soon as I've done the honours.  Hopefully I won't be too long, and if you need to go anywhere, it'll still be there for later.  Big hugs xxx

Hi again Tilly; after a pretty exhausting hour, I'm done for now.

That oncologist with the nonexistent bedside manner; I can well understand how her attitude has knocked you both back, but you are within your rights to request to see another, once you explain how unhappy you are with the way she dealt with you at your last meeting.  The new treatment sounds promising but please mention hubby's dread of the chemo if you haven't already done so.  It sounds like he's coped well with other treatments so far and fingers crossed he will with chemo.  The worst thing is how everything's getting you both so down, and I'd be asking if someone on his team could speak to you asap to address these issues.  If waiting is involved, get on to your GP and demand an urgent appointment; don't be fobbed off as they're supposed to be the first port of call where patients are involved.  If everything you try presents a stumbling block, contact PALS and see what advice they offer.  And there's always Maggie's.  If you have one nearby, they offer a superb support service for cancer patients going through all manner of distress.  Please reach out to anyone who could help Tilly, as you mustn't struggle on by yourselves my lovely xx

Thank you for reading my profile but things have changed for us too, since the last update.  My hubby suffered a stroke over two years ago, but since cancer his motor and cognitive skills have taken a right battering.  He was also hospitalised recently, after a collapse, and is now struggling with walking and generally moving around.  He's tottering about like a ninety year old, and I have to help with washing, shaving, dressing, etc. as well as his stoma care.  It's tantamount to having a giant, unbendy doll, and I'm no spring chicken!  We're also waiting for results on two separate tests, and feel like we've taken 20 steps back from where we were three or four weeks ago.  But at least his appetite is still ok, so there's always that.  It's all fabulous - not - and the woman a couple of doors down has been mowing her postage stamp sized lawn forever, getting on my last nerve! 

Well that's my woes unpacked, and I'm hoping I haven't added to yours, but my coping mechanism is trying to stay calm and talking calmly to hubby, through his many tears.  It's not an easy life my lovely, and none of us asked for or wanted it, but I'll bring out the old cliché, one day at a time.  It can work and don't lose your sense of humour...I even had hubby laughing earlier, albeit silently, at some daft crack I made.  You're not alone in all this hon, and I'm sending you both strength, encouragement and hugs xxx

My reply should have been to you Tilly, not me.  I really think I'm going crackers sometimes  

Thats ok, I read your message. Sorry to hear about your hubbys set back. I know how hard stroke recovery is.

I'm 61 & half my life as been caring for family, I lost my sister to cancer 22 yrs ago & my Mum 9 yrs ago & 16 members of my family lost through cancer, so my caring as had its sttengths pulled!

I'm very strong or used to be, but I can feel my strength going, I have my own health to deal with as well, which hasnt been great so to speak! And dont get me started on lawn mowers & leaf blowers, that sends me 0 to 60 in seconds!!.

Hubby MRI for spine in Thursday before pre treatment obvs before treatment starts Friday, this was arranged with his normal onco yesterday as she wants to see if more radiotherapy can be given. 

But I was specific with results from that to the MRI team, I want any results given to me by his normal onco, not the one from last week.

So on Thursday when when its pre obs for treatment & dr death is there, my response wont be good. I'm a very calm person I know a lot of medical terminology, but this doc as set my husband back to the start of this, so my anger is quite high. Last night he didnt sleep, mind on over drive. He has seen mental health at GP's & psychology in Marsden, but he puts on a different persona & they think hes "ok" when I know hes not, but my husband as always been the same & he wont change. Hes terrified tells me but no one else, all on my shoulders, but sadly my shoulders are crumbling! My hubbys never dealt with bad things in life, he cant, I've always done it.

And today I've woken up with a sore throat & feeling quite unwell. So I dont even know if I'll be allowed to go with him this week....can things get any worse...boilers broken down! I literally feel like falling down. I think I went to sleep last night with my phone in my hands listening to a meditation record, but not sure! I cant remember pin numbers, dates etc I'm just tired & would pay for someone to take my life fir a week just so I can be me again.

So thats everything so far....x

Crikey.  I think we're living parallel lives as so much of what you've said resonates.  I've aged physically at least ten years during the last twelve months!  Haggard, knackered and sleep deprivation have taken their toll - throw the MiL from the bowels of hell into the mix and the recipe's complete.

But enough of my whining!  I'm really sorry to hear about so many close relatives being victims of this insideous disease, and I can relate to that too, but I'm glad you're ready to stand your ground as far as Dr Death's concerned, so don't waiver.  Too many ignore the fact that we deserve autonomy so dig your heels in.  You know your husband best, and I'm afraid you'll have to be his voice until his new treatment, and everything else, gets underway.  That's what I've been doing, and still am on several different fronts, as mine doesn't have one anymore.  Oh, lass, you're probably unwell as the stress has played a part and the flaming boiler on top of it all.  Nothing's simple anymore, and I don't blame you wanting to swap places for a week, with someone who lives normally.  I've forgotten what it was like, not facing every day without worrying, but there'll be many on these forums going through it too.

You know what?  I might take my own advice and visit Maggie's the next time we've got an appointment at one of the hospitals hubby has to attend.  And he'll be going in with me as we have to attend all his appointments together, whether he likes it or not.

In between all the crap I try to relax, if possible, and think of anything other than the reality of daily life.  It's not a great tip as I don't have much success, but if you could maybe get yourself out of the house for a couple of hours, it's a start to reclaim a bit of you.

Well my lovely, I've been as much use as a chocolate teapot but if we chat again, here's hoping we'll have at least one positive to report.  Fingers crossed for that xxx

Thank you x