Glioblastoma Diagnosis and initial treatment

Hi there,

You've both really been through it. That period now seems such a long time ago but for us it was only last July/August. Everything is happening so fast you can hardly draw breath. 

I'm guessing you know the standard treatment from here for grade 4 is 6 months of temozolomide. We've just come to the end of that for my wife. She's coped well with it but everyone is different. It is a calmer period, if symptoms are stable, but there's blood tests before each cycle and they can be nerve racking. There's also the delicate balance of getting the steroids down. We've got her down to 500mcg each day but it's been a struggle to get down to that. 

Try to hold on to that upbeat, positive outlook. I really think it makes such a difference and you'll need it. I know the grade 4 diagnosis is scary but all you can both do is take each day as it comes. You're right that at times it feels like you're just waiting for the next scan but in between you can enjoy life as much as possible. 

We've just been told that the latest  scan looks OK (some residual cancer but nothing to worry about yet i.e. start treating) so we're planning the summer with no blood tests or chemo. Yes, we'll be nervous before the next scan in late July but until then we try not to think about cancer even though she's been changed forever mentally and physically by what she's experienced so far.

There's quite a few of us here in this group so even if we can't always offer practical advice we can at least offer our support for you. This journey is just so tough I think we all need all the help we can get.

Wishing you both all the best,

Chris

Hey Shebelieves,

I just want to completely endorse everything Chris just said.  

Well done for getting through the radiotherapy.  That was a bit of a milestone for us because the constant trips to hospital are so attention consuming.  I recall that it was around that time that things started to get into a bit more of a routine, and we could start to plan things, like getting away for a few days here and there (made a bit tricky because this was 2020 and holidays were extra hard to arrange that year!).  

Most people seem to find that Temozolomide on its own is not too bad.  The fact that it is tablets at home, rather than infusions in a hospital, the fact that you are 1 week on and three weeks off, the fact that its side effects are normally limited means that you will probably find a rhythm and get your life a bit more on the tracks.  And, all being well, after that it is just the stress of regular scans.

Stay upbeat if you possibly can!  Your husband is probably not going to get much better than he is now, but there is every reason to think that he will stay stable for a good while.  The chemo probably won't make him worse.  You may be able to get some support from a neurophysio who can give some exercises and support (though the waiting lists for NHS support in this area were long - we were fortunate that my work's health insurance covered it for my wife).

If you have the chance to arrange some time away together, then do.  (Caveat - we never went abroad - I gather tha health insurance can be tricky (though possible) when travelling with cancer).  Don't feel overly constrained by the chemo schedule.  If you have to push appointments back by a week to suit your schedule, that is absolutely fine and the hospital will support it.

Meanwhile, as you say... one step at a time.  Sometimes we had to live day to day, sometimes, when things were stable, we got to live week to week or even month to month.  You can't live in a state of constant high alert... your mind won't let you - life finds its rhythm.  For a while, about 1.5 years in, my wife was having no treatment and was sufficiently stable that we (almost) forgot about it altogether and got on with living our lives.  

And in the meantime... look after yourself, try to work out who are the family and friends that you can lean on, who will listen to you without trying to fix it, who will know when to back off and when to get you out for a walk or a drink.  And try to get your husband to involve his frends too.  I really needed my wife's friends towards the end of her life - when she had had enough of me looking after her and just wanted someone else to come and be with her for a bit.  My experience is that people want to help - they just don't know what to do.  I'd really encourage you to build some strong support structures now.

I'm so sorry you are having to go through this.  Sending you a big hug.

Pete

Hello Shebelieves

What you write resonates so much. My wife was diagnosed in November and she is just starting her third session of TMZ having finished radio/chemo. As Branoc and Pete or Stan say, the chemo months seem easier, at least less stressed with hospital appointments, but she got very fatigued after the last round and was asleep maybe 14 hours a day. She's woken up again this week in time for next round! But she's doing well, it's just the constant backdrop and uncertainty that are hard to cope with. As it happens, she has also lost weight from arms and legs, which I assume/d is from her trying to do super-healthy diet.

After six months of not wanting /able to engage with friends, M has today started to get back in touch on whatsapp. This makes me very happy as having a community is so important - like what Pete or Stan says. 

Good luck with next stages and keep in touch

x

HI Shebelieves

Not got a huge amount to add to all that Chis and Pete and HW66 have said but wanted to reach out to add my voice of support to the many here.

As you've perhaps seen from other posts, I've been supporting my husband with his GBM journey since he was diagnosed in Sept 2020. He was 50 at that point. The 6 weeks of treatment now feel like a lifetime ago. He too brought his mask home. That day as we were stuck in a queue of traffic, he decided to put it on just as we drew level with a bus. He scared the life out of a poor woman who was looking out the bus window! He then brought it home, put a coloured light in and used is as an ambient lamp in the conservatory for a few weeks....gave me the creeps!

One thing to remember about the radiotherapy is that it continues to keep working after the daily treatments have stopped so the fatigue may continue for another month or so but should gradually ease off.

My other half declined all further offers of chemo in Jan 2021, deciding to take his chances. He's a fitness freak and all he was and still is interested in is running. It was Oct 2022 before there was any re-growth. In that time he lived life as best he could. His symptoms are all mental/cognitive so physically he's been fine. He's really been more like someone with dementia than cancer. He's been abroad for a few short breaks and we got travel insurance for that for him via All Clear. It was about £400 for a week in Paris- just to give you an indication.

We are now in the final phase of this rollercoaster ride and under the care of the local palliative team and local hospice nurses. He's still physically really fit- he ran 10 miles this morning and walked another 10 this afternoon -no idea how he is doing it! It's keeping him going and who am I to try to stop him?

I guess what I'm trying to add here is that everyone's journey is unique here. 

As the others have said, please take care of yourself here. Hopefully you are about to get a period of relative calm so please ensure that you take some "me time" to recharge your batteries when you can. It's not selfish. It's essential, trust me. After 33 months of this rollercoaster ride, I'm not too proud to admit I'm exhausted emotionally, mentally and physically but we've got to keep going. One step at a time and we'll all get there.

This group is a safe and supportive space so please reach out anytime. We're here for you. You're not alone.

It’s always good to talk so please remember that you can also call the Macmillan Support Services on 0808 808 00 00 - most services are open 8am to 8pm, 7 days a week Clicking here to see what is available. This service provides lots of cancer information, emotional support, benefit and financial guidance or just a listening ear.

For now though I'm sending you a huge virtual hug and lots of positive energy. Stay strong.

love n hugs

Wee Me xx

I am in the same boat with my husband - probably about 2 weeks behind yourselves and the same. He is fit and well in himself and exercises everyday.