Worried and scared

Hey Jobo, so sorry all of this is going on. I know for myself that when my wife's symptoms are stable I can cope OK but when they're worsening each day it can feel like things are spiralling out of control. 

Your husband's symptoms sounds very familiar. My wife's left side just slowly gave up with her dragging her foot and unable to hold things in her left hand. In the last week we've now had to resign ourselves to the wheelchair for everywhere including in the house. 

We had a similar situation  with the sudden increase in steroids. Back at the beginning of December I phoned the hospital who had an early look at her latest scan and they said to get her up to 6mg of dex and bring her in. The problems had been caused primarily by swelling not the cancer though that has now followed suit and it causing it's own problems even with daily 8mg of dex.

I'll be thinking of you next Tuesday and hope that the news isn't too bad. I know exactly how terrifying those meeting are having had one today which we now know will be the last with the consultant as there is no more active treatment, which at our stage is actually a bit of a relief as it was a lot of stress for questionable benefit.

One thing I would say is to let the children know. All kids are different but my 16 and 14 year old boys have been amazing and really supportive throughout. I find it much easier myself when I can be open with them and they with me.

Take care of yourself, try and get out while it's dry, chat with friends, try and find time to have a break whenever you can because as you say this is incredibly tough.

Sending hugs,

Chris 

Thank you so much for your reply, it makes me feel less alone in all of this but I'm so sorry you're also going through it, particularly from your meeting today.  ️ 

We all know the day will come when we get bad news but goodness me its hard. Its so lovely that your boys are supporting you,  I think we will plan to tell ours after next week.  I guess deep down I was trying to hold onto hope that it might be years down the line before we had to do it.  

Moving to a wheelchair can't have been easy  , if your wife is anything like my husband im sure she will have resisted that! We live in a 3 storey house so mobility might be a bit more challenging! 

Thanks again for replying, its really appreciated 

X

Hi Jobo 

You've been through so much in such a short period of time, I'm so sorry you're going through this. 

It really is so hard not to speculate and symptom spot.. I know this feeling all too well. Every time my dad would use a wrong word I would spiral and go down Google rabbit holes trying to understand what it all meant. Swelling and steroids do have a lot to answer for for so many symptoms it seems... Hopefully the increase will help him feel better soon. 

The wait for scans/results is torture, so you will be in my thoughts for the next couple of weeks whilst you wait for some answers. 

I think Chris is right that you should start thinking about telling the kiddos. It is so hard to know when it's the right time. My daughter is almost 3, so a lot younger, but i really agonised about what to say to her. Me and mum started noticing new symptoms for my dad, mixing up words and getting incredibly confused.. He started getting some headaches and we could just notice changes. We had a feeling that the tumour was back and it was at that point we started being more honest with my daughter. She had always known my dad had a 'poorly head' but we switched to saying it was 'broken' and he wasn't going to get better. I know this is different with older kids as obviously they understand everything, but in hindsight we knew in our gut that it was the right time to prepare her, and it lifted a weight off my shoulders too. 

I feel like whenever I post on here, I say the same thing, that all you can do it take it a day at a time. We all understand you here xx 

Thank you! I totally recognise that Google rabbit hole. Some days are just harder than others aren't they?  Your advice on one day at a time is so true, its all we can do. It's so comforting to know we have this group.  Hugs to you and your family xx

Hi Jobo

so sorry to hear about the changes you're seeing.  Don't assume the worst just because they have upped the Dex. These GBM journeys are a rollercoaster ride from start to finish. Sometimes we get a wee lull and can enjoy the scenery then out of the blue it loops the loop but there could be a lull around the corner. 

G had a rollercoaster ride with Dex. He took it for a few weeks right at the start in Sept/Oct 2020 at around the 2mg level but he decided he didn't like it and was binning the pills. Men! The CNS gave him fits when she found out as you need to carefully wean the doses down. 

He never took it again until March 2023. Again he started on 2mg and it went up to 4 mg I think for a bit and he was gradually weaned back down to one tablet a day then out of the blue he started having multiple focal seizures...cue Dex going up to 16mg for a short period and then once he stabilised we began the weaning process all over again. He got back down to 2mg eventually and that was the level that he needed to maintain his best position at that point. 

Don't be surprised though if as they increase the dose he becomes bad tempered and begins to eat you out of house and home! Both are well known side effects of the drug.

As the others have said I would also suggest that its time to tell the kids the truth. Kids are more resilient than we give them credit for and they have probably sussed out more than you realise. There's some useful information on the main body of the website but this link might be useful Your feelings as a young carer | Macmillan Cancer Support

Please remember that we are here for you and the helpline is only a phone call away. Having been in your position I know how exhausting and scary it is, especially when you are trying to be the strong one for your kids. Be kind to yourself. You're going through more than you realise too here.

sending a huge virtual hug and lots of positive energy. Stay strong

love n hugs

Wee Me  xxx

Hi Jobo. I am so sorry you are going through this and it is all so frightening. My husband was diagnosed in August 23 and has had the tumour and cyst removed, radio and chemo and is now on a 6 month chemo cycle. I wanted to reply to you as we have 12 and 10 year old boys. Once we were armed with all the information prior to the treatment starting, we sat them down and were honest with them about what dad has and what this means. It was absolutely tough but I felt a weird sense of relief when we had so we could then be open around them - age appropriate of course. My eldest asks lots of questions all the time,  which have included him wanting to know what will happen ‘when dad is so unwell and dying’ … he wants to know he will be comfortable. Our youngest doesn’t talk so easily but we are here if he needs us. I would also advise to ask the school for support. I am a headteacher and my youngest comes to my school - we have a fabulous nurture base and he did a 12 week draw and talk sessions with one of my LSA’s. It took him until week 10 to open up. School can help support your children. We have also started to engage with Maggie’s Centres to support us as a family and we visit regularly. We are going to start taking the boys in half term so they can begin to make relationships and feel comfortable now rather then trying to do it when the time comes. I hope that helps … sending you love and strength … thinking of you x 

Thank you so much, you always have such good advice and kind words. That's helpful regarding the dex, his appetite last time he was on the dex was ridiculous! He was very emotional today, so very hard to see.  My lovely strong capable husband like this. I totally understand what you're saying about a different person,  I'm already trying to take that approach.  My stepson is nearly 25 and my stepdaughter is 22 and we are all very close so I can see how telling them might help.  Sending hugs to you too as I'm sure you're going through a whole load of other emotions yourself.  Yet you still fnd the time to support others. Thank you ️

Thanks sunflower, the school advice is really helpful.  I did wonder what I needed to do around school knowing and supporting him.  I'm so sorry you're in this position too, with young kids it's awful to have to tell them things like this. I lost my dad at 14 very suddenly so I know how it feels to lose a parent so young.  Life can be so cruel sometimes. Sending lots of love to you and your family too xx 

Hi jobo, I have stage 4 glioblastoma and awaiting my next plan after finishing radiotherapy n chemotherapy, I have mostly been well n positive but had a few falls also and my memory is going west wich gets me angry, my steroids go down this week and my seizure tablets will double I think as we are all different it's almost 'like we are guinea pigs  , I send good wishes to both you and you husba

• Hi Lee, yes I think you're right. There's so little research on gbm4 that it seems a lot of the concoctions of drugs are trial and error! Glad you are feeling ok after your treatment, my hubby did really well during that time and we managed to do quite a lot.  Like wee me said its a rollercoaster journey for sure! Sending lots of positivity and hugs x