Lost, scared

Hi Maltings, 

I can understand your frustration with hospital appointments and different people saying different things. I can also relate to the feeling of being 'blamed' for things.  It doesn't help if your partner is trying to ignore everything,  which it sounds like it might be the case? 

My husband is on 1250g of keppra twice a day.  He didn't have awful sids effects mostly mood I think but it didnt last for a long time. I think once the body is used to it hopefully the side effects will settle. 

We have had issues with different medications my husband is taking. One drug tends to cause side effects and problems with something else. The team keep saying that they need to get him off the steroids but then they put them up again (obviously they feel they are needed) and the next visit they look at me and say that ideally he should be off them now and I feel like they're blaming me somehow? 

Everything is a balancing act isnt it and it can feel like walking a tightrope trying to get everything right and all the time watching your partner waiting for changes or developments and constantly feeling scared. I'm sure lots of people on this forum can relate to what you are saying.

Sending love and hoping your partner stays well and that you might feel a little better knowing that you're not on your own with how you're feeling.  You can always reach out here xx

HI Maltings

My husband is also taking Keppra and has done since early September. He's on a relatively low dose 2 x 250mg a day. To the best of my knowledge I've not seen any adverse effects that I could attribute to them. In fairness there was a lot going on over the first week or two when he started on them. It coincided with his craniotomy so there were other drugs in the picture.

One drug that did affect his moods was the steroids he was taking for a while. He was really nasty at times while taking those!

I guess everyone reacts differently and there's no right or wrong here.

I hear you about the feeling lost with the medical team - no one tells you the same thing twice, different face every time, no consistency. That's my biggest bug bear just now. I feel there's no one  nurse or doctor that I can turn to for support when I need it. When I mentioned this to our CNS, her response was to say "call the helpdesk if you need advice."  That made my blood boil. If I'm phoning for help in this situation I don't want a faceless helpdesk!  Another oncology nurse actually told me it was a pity we weren't claiming any of the financial benefits available as that would have opened up a different care package to us.  Just because we're fortunate enough not to need their money doesn't mean we don't need their support in other areas.

Lost, confused, scared and lonely (isolated) about covers how a few folk feel in this group but something I've learned since being on here- you're only a message away from someone who understands because they're walking the same road as you. That's been a huge help to me.

Hang in there. Stay strong. I hope things settle down for you both soon.

Big hugs

Wee Me  xx

Hi Wee Me, 

How are you? I hope your husband is keeping relatively well and still managing to run when he can. 

What you said about the CNS's response to you asking for help and guidance must be so maddening for you and I really do understand that.  I have to say that my husband and i have been very lucky until recently that we've got on well with his CNS and saw her regularly. But the last time we saw her was in November. I've resorted to emails as I seem to get an answer to that but calls to check in are not when we're told they'll be and it feels that the oncology team are taking less of a role right when my husbands tumour is growing again and we need them.  

They did ask our GP to refer him to the community Macmillan nurses so palliative care and district nurses call and visit him now and they are brilliant.  Is it an option for your husband. I wasn't ready for their involvement when it was mentioned as just thought we're not there yet but they care for him as a whole person not just what's happening in his head. 

With regards to benefits we decided that although at the point we were asked if he wanted to apply we weren't desperate for help we did apply as we knew we would need it soon enough. Same with the blue badge,  we thought I'd be ages till we needed that and we would only use it if absolutely necessary but it is already. Might be worth considering?

Sending you and your family live and best wishes xx

HI LC50

I'm ok..I think. We've had a bit of a rollercoaster week but we're here to tell the tale.

We've not seen or heard from the CNS since November when his radiotherapy ended. Since then we've had 4 video consultant appointments with 3 different doctors so we're not getting a chance to build any trust/faith in anyone. Every scan appointment seems to be in a different hospital too so since August we've been to 8 different hospitals. Not really the kind of tour I wanted to be following. Those usually involve hot sweaty crowds and hard rock music! LOL

We had 2 calls last Monday morning. The first was planned . The second wasn't. "Patches"  on the surface of my husband's brain had shown up in a ct scan done in mid-January and the MDT team couldn't decide what they were. The best guess was either  infection, bleeds on the brain or tumour activity. A  follow up MRI was arranged for end of Feb. A few days after the MRI, we  got  a  letter that we needed for my husband's employer, relating to his income protection stuff, and the letter was worded such that we were led to believe that they'd confirmed fresh tumour activity. We also found out the blood clots that had been found in his lungs at the end of Sept (the lungs are now clear) had complicated his chemo/radiotherapy, worsened the overall prognosis and have been classed as significant pulmonary embolic disease.  So we were expecting bad news when we spoke to the consultant (yet another new face) on Monday. 

He actually gave us ok news- no sign on tumour activity, we could stop the daily anti coagulant injections at the end of March and a follow up scan would be arranged for June. My husband's spirits were lifted by this news. Then  less than 2 hrs later the same doctor called back, said he'd referred the scans to a colleague and had confirmed that these "patches" are non-blocking blood clots in the large veins in the brain. I was out when he called so got the info second hand from my husband and daughter, who overheard the conversation. It was left that someone else would be in touch.... and so far that's the last we've heard. He's been really down ever since. We all have.

He's still running and pushing himself to the limits 6 days a week. It's all he has to focus on. My heart's in my mouth every time he's out in case something happens but what's the point in stopping him?

This is just so incredibly cruel but to use the phrase I now detest "it is what it is."

I had floated the idea of applying for a Blue Badge past him but just got growled at so I've parked that thought for now. Apart from hospital trips he never comes out with me anyway so maybe we won't ever need it. Who knows.

Hope you're doing ok.

Big hugs

Wee Me  xx

Thank you for your kind words. I can relate to all you have said, and in your other comments with Wee Me. 
Lots of love, and prayers to you and your family. Xx 

Hi Wee Me

thank you got your reply I can relate to what you have said. I sometimes think how on earth did they get a job in a hospital, no empathy, care whatsoever, it’s appalling. 
I haven’t been on this long, and find it very supportive, thank you. Especially with lock down just now. 
sending lots of love a prayers to you and your family. Xx

Oh Wee Me what a nightmare all that sounds! I can imagine you must feel exhausted with the good news/ bad news or no news!! 

Is there no major neuro centre close to where you live? It sounds like no one really knows what they're looking at. The good news though is that it does sound like they agree that the 'patches ' are not new tumours which is good. Hopefully someone gets back to uoh next week with a plan to deal with these blood clots.

I'm glad that your husband can still run, it sounds like it's his way of coping with his diagnosis? At least its something that lockdown can't ruin.  

Xx

thanks LC50.  The institute of neurological science where he had his surgery last year is part of the Queen Elizabeth Hospital campus in Glasgow. It's about a 60 mile round trip to there. The West of Scotland Cancer Centre is about 3 or 4 miles from there. We were passed from one to the other after the surgery. Who knows where we'll be referred to next! We're working our way through all the hospitals in the health authority! He's even had a scan at the Royal Children's Hospital LOL

Running is definitely his coping mechanism. And long may it continue to help him to cope!

xx