My husband has stage 4 glioblastoma. I am new to the group to look for support and share experiences

Thank you I will contact these and see of they can help x

HI Ali

a warm welcome to the group. I see some of the other members have already reached out which is lovely to see. This is a safe and supportive space and I've personally drawn a lot of comfort and support from it over the past two years.

My husband (then 50) was diagnosed GBM4 in Sept 2020. He too had a craniotomy followed by 6 weeks of oral chemo/radiotherapy. He was re-admitted to hospital within 48 hours of coming home due to an infection. No one really defined what it was but we suspect sepsis. He was then re-admitted about 3 weeks later with multiple small blood clots on his lungs- another post-surgical joy. He coped really well with the 6 weeks of treatment and the only side effect was fatigue which kicked in about week 4 and lasted for about 4 weeks after the last treatment. Since then all has been pretty stable until recently.  His tumour (now tumours) is in Broca's area of the brain so the impact has been more cognitive/behavioural rather than physical so far. He's a bit like someone with dementia.

initially he too was in a bad place. He's a fitness freak (marathon runner). When he first came home from hospital the second time, he couldn't run but he would disappear for hours on end for walks. The memory issues meant he often couldn't tell me where he'd been. He declined all offers of emotional support but those long hours alone seemed to help him come to terms with it as best he could.

Our two kids were 20 and 22 at the time and have been my absolute rocks throughout this emotional rollercoaster. 

There are no hard and fast rules here as to how to cope. Everyone is different. You go through every emotion in the book and then some but that's ok. It's the strongest most resilient among us who let those emotions out. It takes as long as it takes to get your head round it and some days will be easier than others. Even after 26 months of this journey I still have plenty of wobbles but the key is not to beat yourself up over them. Let the emotion out then move on. On the tough days I break the day down into manageable chunks. I'm still working fulltime from home so its a case of "if I can get past the 10am meeting, I'll be ok." ... "If I can get past lunchtime, I'll be fine." and so on. 

You need to take time for yourself here too. I know it may sound selfish to take "me time" but its essential to keep your wee batteries charged. This is a tough gig and you'll need the energy. So go to the gym, go for that walk, stop and sit and drink your coffee with a good book. Do whatever it takes even if its just for a few minutes.

As you've seen this group is there for you. You're not alone so please reach out anytime. There's always someone around to listen who gets it, someone to hold your hand and to offer that virtual hug when its needed. 

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, I'm sending you a huge virtual hug and love and light. Stay strong. You're coping so much better than you give yourself credit for (you'll just need to trust me on that.) Remember to breathe.

love n hugs

Wee Me xx

Hi Ali.  I have the same condition as your husband (GBM 4). It is an awful diagnosis, there's no getting round it, but I really endorse Daybyday's advice not to dwell on the statistics and in fact, don't dwell on any of the stuff that you can't control. I had surgery 18 months ago followed by radiotherapy and chemo. I feel lucky in that I have made a good recovery.  I have been able to get my fitness back and have been given a place in the London Marathon in April when I'll be running for The Brain Tumour Charity (I did another fundraiser for Macmillan too, as they have been brilliant for me). I know that not everyone is as fortunate as I have been but in every case, we have to find ways to come to terms with our own diagnosis. I don't plan too far ahead and try to enjoy family life as much as I can. I have three-monthly MRI scans and after each one, I try to 'park' all the anxiety and do what I can to keep busy and stay positive.

My wife and I also have three children but we're in our late 50s and they are all in their 20s now and independent. That also makes me feel lucky as it would be harder to leave younger ones behind. This said, it is never easy - I was in my 20s when I lost my Mum, who also had a brain tumour (coincidentally...I do not have a hereditary condition) and that feeling of loss never goes away. 

As I say, think about the things you can control as there's no point in speculating on the other stuff. It starts with concentrating on recovering from surgery and getting through the RT and chemo. I now know I can control what exercise I do, what I eat, whether we can go away for a weekend somewhere nice, how we can have good family times together. I have been able to return to some part time work (again, I was only working PT when I had my diagnosis so I recognise that I don't have the pressure of having to get back to FT work, that younger patients might feel). 

I don't know if this is of any help. I hesitated before writing this because I do accept that however shocking my diagnosis was/is, I have not suffered as much as many others and all I can do is to be thankful for that. It makes me more determined to get the best from life because the condition is unpredictable and is likely to come back at some point. I try not to worry about the long term future as it's out of my hands. 

I haven't had counselling myself but I know it's there if I need it. One of my children has accessed counselling through a work scheme. Other people on this thread have suggested some great ideas and if my children were younger I would certainly be thinking about those options. Children can bottle things up, can't they. 

That's it. It's not easy but my experience has been that the treatment can be quite successful and you can still get a lot from life. Again, it does depend on the individual but this has been my experience.  I wish you, your husband and all your family the strength to keep going and stay positive. Best wishes also to everyone who comes onto this thread, whether as a patient or a family member to share experiences and support one another. 

Thanks so much for your reply.

It is really comforting to hear from other people who are in the same boat and understand.  

My husband was in a bad place this past week, but today he seemed to wake up feeling much better and we had a lovely Sunday with the children.  At the moment its these days that I am clinging onto.  Hearing that you have been on this journey for 26 months, as tough as it is, gives me hope that we have time to have many more of these days together.  

Sending you lots of hugs xxx

Thank you for sharing your story.

I read this to my husband.  I completely agree with taking control of what we can and trying to live for each day and enjoy family time as much as we can when we can.  But to hear this from yourself has really helped, as I felt like I couldn't possibly be in a position to give him advice when I am not the person actually dealing with trying to come to terms with the diagnosis.  

My husband was also very fit and cycled into London and back to work each day around 35 miles a day) so is struggling with lack of mobility and loss of eyesight since surgeries.  But to tell him you have been able to get your fitness back and have a place in the marathon is amazing and has given me hope that he can get some of his fitness back.

Your positivity and hope whilst going through something so awful is honestly inspirational.  I wish you all the best with your journey xx

That's a great message to read (also the one to Wee Me which shows you had a lovely family day today). 

All the very best to all of you. 

Stay strong and positive 

Make memories, ask for help from loved ones or professionals, Macmillan made my brother’s passing how he wanted it.

Take one day at a time , hug him , tell him you love him dearly, laugh and make memories, take lots of photos cherish your time together.

 Remember to look after yourself too .

Life is cruel and harsh but unfortunately we can’t change our situation so please stay strong .

My brother lasted ten weeks on palliative home end of life , he was a warrior- he did suffer but I am in awe at his strength. He has left a great legacy fundraising money for brain tumour research and I hope to carry that on so no other family suffers this devastion.

Make beautiful memories with your kids that they can cherish forever , brain cancer is cruel but you can do this . Be his rock , he must be going through the emotions too as my brother was but once he knew we was going to be ok after he passed he said he was no longer scared to die, inside I was broken but i couldn’t let him see that , I wanted him to die with no regrets, no worries just be free , pain free and sleep peacefully- he deserved that. The day he died my heart was ripped out but I promised him I would stay strong and make the most of my life.

I miss him dreadfully but he is flying high watching over me daily.

Hello, my husband was diagnosed with GBM 4 at the age of 49, I do not speak English but I am using a translator, trying to know more about the subject and what I should expect.

I'm afraid, we have two children, one is about to enter university in August and the other is in school at 16 years old. We have finished the first phase of chemo and radiotherapy and now after 4 weeks of rest we have returned with chemo and clinical trial here in Miami. He has not been feeling well and his energy and strength have decreased considerably. I have faith, but sometimes I don't know what to think or how to support him, we have been living here for 3 years. I hope to have help that can help me or information to achieve better results. I apologize if my words do not read very well but as I mentioned, I am using a translator.

Hi MariaLY

a warm welcome to the group. Sorry to hear about your husband.

I supported my late husband through his GBM journey for over three years and the simplest way to support him was to be led by what he wanted. That sounds easier than it is in reality. These tumours impact everyone differently so what the person is capable of doing varies widely.

This group is primarily based in the UK so I can't comment on the support that is available to you in Miami. Sorry. I would suggest that you speak to his medical team and check to see if there is a local support network for you and your family. If you were here, I'd suggest linking in with your local hospice as they offer support to the whole famlily.

This community is a safe and supportive space so please reach out here anytime. There is always someone around to listen who understands. You're not alone. We're here for you.

sending love and light and hugs

Wee Me xx