Husband considering refusing chemo

Sorry to hear this. It's really not a simple decision as there are so many factors to consider. It's very difficult with any chemotherapy to differentiate the side effects of the treatment from the cancer itself. Having read so many stories on here now about temozolomide I would say that as a general rule it seems to be pretty well tolerated but everyone is different. 

My wife was sick after her first dose of it but then we switched anti emetic from domperidone to ondansetron and that really helped (though does cause constipation). Perhaps he could give it a go and if it really is intolerable then have another chat with the CNS or oncologist. For my wife it ended up being the blood tests that she hated as she has tiny veins so they'd take ages to get any blood and over time the fatigue caused by the chemo subsided. She did finish the course in the end though at the end of March and I won't lie it's nice to not have to deal with treatment for a while though obviously I worry about just letting the tumour get on with things.

As far as other options then that's conversation with the oncologist but options like PCV or lomustine alone can be pretty rough themselves. 

On the mobility side have you had any Occupational Therapy support yet? We had them round for the first time this week as my wife couldn't get out of the bath and was started to struggle to get out of bed. I phoned a number on our local council website and they sent out an urgent response team. They were really helpful and sympathetic to our situation. The next day a van turned up with with various items to help around the house. The bathing is going to be a difficult one to solve but we're going to a local mobility centre to look at options. 

Ahead of him starting the temozolomide (if he does) it might be worth keeping a journal of how he's feeling each day with a score out of ten. That way you can keep an eye on this if treatment starts and be able to see what correlation there is to feeling unwell and have some notes to discuss with the clinicians if needed.

Ultimately, I don't think there are any "wrong" decisions here. I can understand people who want to fight with everything they can and I can understand people who want to focus on enjoying life even if that means sacrificing some time in the long run.

All the best and sending a virtual hug,

Chris

HI Shebelieves

For what it's worth, my other half declined all further chemo after the 6 weeks of chemo/radiotherapy. He decided to let nature take its course but he wanted quality of life over quantity. It was his decision and one I had to respect. Much as we love them, its not us who have to swallow the pills and suffer the side effects.

Everyone's unique here and these evil tumours impact in so many different ways. In G's case as I've said before his symptoms were mainly cognitive. All he cared about was being able to run. Running was the only part of his "old life" that he'd held onto - it still is. His initial prognosis back in Sept 2020 was 12-15 months. He's still here and by some miracle, he's still running. Our time is now short- we accept that- but he has enjoyed a reasonable quality of life over the past 33  months.

There are no right or wrong answers here but hard as it is you perhaps have to let your husband make his own mind up here, based on as much information as he can get from his medical team.

I feel for you. I really do and I've been exactly where you are now.

love n hugs

Wee Me xx

Hey Shebelieves,

That is tricky.  Definitely worth a chat with the oncologist as to whether the TMZ is likely to be causing the loss of tone.  If he is on steroids they may be a more likely cause - which is one of the handful of side-effects that make them minimise steroid dose as much as possible.  As Chris said, the other chemos are more debilitating - so there is probably not a better alternative to TMZ for where your husband is at.

Otherwise, as Chris and Wee Me have said... your husband has to decide.  As I posted elsewhere a couple of days ago, the most important thing was the surgery.  Everything else pushes the curves a bit to maximise timelines - but unfortunately there is no good answer here - so people have to make their own decision about the quality of life trade-off.  Which is rough on you - but I think in the end you will not want your memories of this time to be arguments about treatment, so I think you should make your case and then support him as best you can in whatever decision he makes.

Definitely worth an OT visit if you can get a GP referral.

Have you a downstairs toilet in your new place?  That will limit trips upstairs to once a day at bed time.  If you reach the point where it is necessary, stair lifts can be hired for six month blocks.  Not cheap still but cheaper than paying for a new (or reconditioned) lift. But worth shopping around since there is a big difference in price.

For info... the scan to prep for radio was just to allow them to make the mask. I don't think it tells them much about the state of any residual tumour, since at that point there is still quite a lot of inflammation post-surgery.  IIRC that is why they don't scan for a while after radio as well - because that also causes inflammation and limits the amount you can get out of the scan.

Keep looking after you.  I know this is a tough time for everyone.

Pete

Hi Chris,

Great answers (as usual).

Point of order.  Fi got stuck in the bath on two occasions.  I got her out with great difficulty on both occasions but it was super upsetting for her - poor love.  It was only a few weeks later that someone told me that the trick is to drain the bath, dry them completely and the bath and then help them to get out.  Much safer for all concerned than trying to lift a slippery adult.

I'm guessing you don't have a shower?  We bought a cheap shower stool from Amazon - which was excellent for a few months and then OT installed one on the wall - which was a little too big for our enclosure - but was very sturdy. 

In terms of beds, we bought a bed lever which helped Fi because she could use her arms better.  Though you probably need an OT to advise where to position it.  

Shower Stool: https://www.amazon.co.uk/Drive-Lightweight-Height-Adjustable-Rounded/dp/B008CFSUS4

Bed Lever: https://www.amazon.co.uk/Aidapt-Lever-Slatted-Eligible-relief/dp/B00UC1TEAO

I'm going to put these into a separate thread since people might find them more generally useful.

Pete

Been moving house and our bedroom looks more like a warehouse at the minute.  The clinical nurse specialist spoke to my husband to assure him regarding the TMZ and the muscle weakness is down to the steroids and he is gradually reducing those.  She gave him enough reassurance that he is reluctantly taking this course of Chemo.  I am annoyed that she didn't suggest delaying 1 week so we could move then start treatment but we have started now.  My husband also has vascular issues which has caused cramping in his leg, which means that he can only walk so far before he is in pain.  Difficult when trying to build yourself up again.  Yesterday he wanted to move us all out of the house we've just moved into and said he can't see us being here 6 months.  I don't know if he is going to feel the same today.  His mood swings are sending me crazy.  I love him and want to support him as best I can while also giving a home to my daughter (and son when he's not at uni) - but I really do despair.  Sadly no downstairs toilet and the upstairs bathroom I didn't realize just how small it is until now.  I have a wee bottle for him but he hasn't started using it yet.  I need to follow up with Occupational Health but I feel like that is on an ever growing list of to do's.

I just feel like I'm in an impossible situation.

Hey Shebelieves...

Well done for making it through the stress of moving.  It sounds like you still have some work to settle in - but you can take your time doing that - there is no rush.  It feels like a win that your husband has agreed to take the TMZ - so that is good.  

Reducing the steroids should also help with mood swings.  As you know, steroids (especially at higher doses) can make you very hyper and all that energy has to go somewhere - and it seems that that "somewhere" is often into being argumentative.  This time last year I was at my wits' end with Fi because I couldn't get her to slow down.  The GP and consultant eventually reduced the steroids and got her onto some mood stabilisers.  (She had been on antidepressants that were just making her even higher - so cutting the steroids as much as possible and getting her onto the right mood stabilisers helped enormously.) 

To be honest, all the stress your husband is under right now will not be helping him to think clearly, either.  We think of these things as unrelated, but someone with a brain injury (tumour, surgery, etc.) is more likely to struggle with stress.  We were fortunate enough to get some sessions with a neurophysio last year, and she explained that the signals can't follow the route they used to follow in the brain (a bit like a road closure) so it tends to get congested and that can have knock on effects on ability to reason, mood and control of physical movement.  And all this gets worse when we are tired and stressed - just like the roads are more blocked at rush hour.

Keep doing what you are doing.  I know it feels impossible, but you are doing all the right things.  Tablet week is probably the hardest for all of you - because you have extra things to worry about and a bit of extra stress - and you have just had the major disruption of the move.  Keep taking one day at a time. You will probably find things settle down a bit in the next few weeks.  Try not to get drawn into debates about the house - for now you all just need some time to draw breath.

I recognise the ever growing list.  The trick is to prioritise the things that will make things easier for you (and getting an OH referral might do that) - but sometimes there is no scope for prioritising because you are too busy just trying to get the food cooked and the washing done!  Again - it doesn't all need to be solved today.  Cut yourself some slack - remind yourself that you are doing something really difficult, but really important.  Call in the reinforcements if you can and try to get out of the pressure cooker every day (even if that involves a setting up regular slot for your daughter to be around for your husband).

Sorry if I am stating the bleeding obvious.  I know it isn't easy.  Big hug.

Pete

Thankfully we moved a few years ago but it was the most stressful thing I'd ever been though up until a GBM came knocking so you're doing amazing to be dealing with both at the same time.

One little addition to Pete's thoughts was about the illogical thinking caused by those "road closures". I think most of us here caring for loved ones see this and dealing with how to react is tricky. What I would say is that at first I tried to fight some of the odd ideas and tried to correct my wife every time she got confused with names, days of the week and just general information processing. 

After a while though I found I just wore myself down and became irritable myself. So now I only really push back if it's something that would cause immediate problems. So when she has bought a birthday present for a friend but it's not their birthday for 9 months I just go with it. If she turns the dishwasher on with just a few plates in it I don't say anything. And if she wants go for an evening stroll down the village in her pyjamas with me well who cares?

Sorry if that's not so relevant to your husband but I found it a real help when I stopped fighting through the waves of this stuff and just started mentally grabbing a board and surfing the waves with her.

Hope you settle into the new place soon and get the help you need from the OT.

Chris

I have put away the last cardboard box from our room today though there is still work to be done in other rooms of the house to settle in.  I feel like I'm being pulled 5 directions at the same time.  My husband hates the house and wants to move out as soon as possible. (But where to rent with a dog and a smoker that is affordable and in an OK location with 2+ bedrooms, room outside for mobility scooter/shed for scooter plus added requirement of downstairs loo and place to sleep downstairs?)  My dog is still too nervous to go on proper walks.  I'm not sure if I've worked out how to relax here. I think much of the problem is that he has not been getting himself out of the house and feels confined by these 4 walls.  He gets pain in his legs due to vascular issues if he walks very far.  His mobility scooter no longer works and we are due to get another one on Friday.  I hope he uses it.

My husband requested a sausage mcmuffin with egg and said he'd refuse to eat at all when I suggested anything else. I asked him to go with me to get it but he said no.  So I got it for him so he would eat.  I'm just feeling like a balloon with all the air let out.  I know my husband isn't feeling great either but I think I just need a real break.

As for the Chemo - we have a date for the MRI and it is about 4 days before the Oncologist appointment.  I'm really hoping the oncologist will have scan results ready to discuss at that appointment before round 2 of Chemo.  My husband says that he will do Chemo but wants it on a lower dose than 320 mg.  He reckons the oncologist had made the prescription before weighing him on the scales and that he had been given too high a dose.  I'm not arguing about dosages with him because there is no point.  I know they will want him on a higher dose.  I told him to tell the oncologist exactly what he is feeling and what he wants to do going forward.  I have encouraged him to reach out to the CNS regarding stomach pain while on the chemo and to reach out to anyone else about how he is feeling in general - but he won't because he says his problems are practical ones and no advice will help.  Last night I ordered a porta potty so there will be a loo downstairs in case of emergency.  I hope this will put his mind at rest about some of the practical stuff but I'm sure there will be more drama to come.

Sorry to hear it's still rough going.

How's he getting on with the stairs at the moment? Any news on an OT visit? 

Have you got anyone who can provide some respite care for you? It is exhausting and you need a break now and then if just for a few hours. Try and get out of the house and look after yourself for a bit. I sometimes just go and sit in a café and have a coffee with a book to read. It's surprising how much something simple like that recharges the batteries.

And sorry if it sounds stupid but I'm a big fan of making a list of all these things that need sorting. Once they're down on paper it helps by not having to juggle them in your head any more. It's also really satisfying when you get to tick some of those things off the list. Might well be worth a call to Macmillan to see if there's any of those items they can help with.

With regards the TMZ dose then if it eases his mind there's no harm in being reweighed at next appointment so the oncologist can check the dose is correct. Hopefully they'll have the MRI results as well but in our experience if they don't then the oncologist will often be able to have a look and give an unofficial opinion as they look at these things all the time just not to the same level of expertise as a radiologist.

My heart really goes out to you and I hope things calm down soon.

Chris