My Dad. Age 60 diagnosed with 2 brain tumours.

Dear ClaireMac, I am really sorry to read of your and your Dad’s situation. I know from my own experience with my late husband just how terrifying this all is. Our situation was slightly different as initially we had treatment etc but when the tumour returned and treatment options ran out there was little that could be done. My advice would be to talk to the health professionals in charge of his case; there should be support psychologically and emotionally too. I don’t know the care system around your Dad but do make use of whatever help is available and don’t be afraid of contacting people repeatedly. Having palliative care in place lifts some of the weight too. It is actually invaluable! I would recommend getting that in place asap. I know this horrible disease strikes the fittest, seemingly healthiest of individuals and it all happens so suddenly. Take any assistance offered from friends and family too. It is just too dreadful to articulate fully, I know. Remember deal with one day at a time… you cannot try to deal with everything at once. Sending much love. You are stronger than you realise.

Hi ClaireMac1986

a warm welcome to the group. So sorry to hear about your dad's diagnosis. Your story really struck a chord with me as it reminds me of my late husband's journey.

G was 50 when he was first diagnosed. He was a fitness freak and a marathon runner too. You can read the gist of our story in the bio on my profile but I'll summarise it here. G was first diagnosed in Sept 2020. He was able to have surgery but 2 days before the surgery he had a major seizure and  was rushed in an ambulance to the hospital in Glasgow. They wanted him to stay in and he refused - he had 6 miles to run to take him to 1500 miles for the year. He came home and next morning ran those 6 miles then went back to the hospital. Move a few months after he had recovered from surgery and had 6 weeks of treatment and he went running every single day. It became his focus. It was the only part of his "old life" that he could control. G had been on steroids when he first had surgery but stopped the, during his treatment. (that's another whole story but the short version is that he didn't like them so was binning them) He remained stable without them.  G was given 12-15months at that point but he ignored that and kept running. Those 15 months were up in Nov 2021. In 2022, G set PBs at every one of his competitive distances - 5km, 10km, half marathon and marathon. In 2022 he ran more than 2500 miles for the year and this was with nature taking its course. He was able to run up until Aug 2023 when he began to suffer with focal seizures and a DVT. When he could no longer run, he walked or cycled on his turbo trainer in the garage. On 21 October 2023, he cycled for 3 hrs in the garage then went out for the afternoon with his friend for an ice cream sundae and a nice drive. He had a great day. Something happened overnight and that was the last day that he was able to enjoy but boy was it a good one for him.

Why am I telling you this? To show you that letting nature take its course doesn't mean an instant decline and that doomsday is nigh. G also went skiing in 2022 with our daughter, spent a week in Paris with me, went to Prague with the boys and even managed to appear as an extra rowing a boat in Outlander (series 7 opening sequence). He made memories with us all and he lived life to the fullest.

When G was first diagnosed, I cried oceans of tears, as  did my son and daughter. Nothing prepares you for that diagnosis. All these emotions you are feeling are perfectly normal and its ok to be scared. I was terrified throughout.

This is a safe and supportive space so please reach out here anytime. There's always someone about to listen who gets it, someone to hold your hand and to offer a virtual hug when its needed. You're not alone. We've got you.

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.

Stay away from Dr Google- he's a scary dude - and focus on the facts as you have been told them and on what your dad wants/feels like doing. When the "decline towards the end" starts you'll know. For now though as long as he's able to, let your dad run and do all the things you can with him. Carpe diem.

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

love n hugs

Wee Me xx

I’m so sorry to hear about your dad. My husband felt ill went to hospital and told a the awful news a brain tumour he was 59. He did have treatment but the tumour returned. We have 2 grown up children and it was a dreadful time. Like your dad my husband was barely ill. He didn’t take any medication. Get as much support in place as you can and keep asking for help and support. My heart goes out to you. X 

I'm so sorry you are all in this situation.  My husband was diagnosed aged 61 and extremely healthy. He had no surgery, but had radiotherapy and chemotherapy. He really hasn't been well the entire time of treatment. The tiredness has been a constant and he suffered balance problems to some extent the whole time. Getting this diagnosis is so difficult. I'd say reach out to Macmillan, get any financial support you can - pip, carers allowance, blue badge. Our local council has Macmillan staff there who helped us. We used the pip money to help with days out etc. You need as much support as you can get. Find out about palliative care if you have a local hospice. Our oncology nurses have been so good too. We're at the end of this journey now. I'd say spend time together and keep banking that time - whether it's holidays, a meal, a film, a chat, and talk. Keep us updated here too. Sending so many thoughts your way. 

Thank you all for sharing your stories — I’m so sorry we find ourselves walking this same awful path together.After about eight weeks of subtle but telling signs from my father in law, we’ve had confirmation that the tumour is growing — and faster than we’d hoped.

He’s been given a prognosis of 3–6 months, but in my heart I expect we’re likely looking at the shorter end of that range.It’s hard not to see the painful symmetry with last year, when his symptoms were repeatedly misdiagnosed as sciatica. That led to an ultimately unsuccessful debulking surgery in September. Now, the decline feels heavier — and final.

I’m hoping we can make it to his 60th birthday in late June, but I know how quickly things can change. I’d really appreciate any advice on how best to navigate the coming months — particularly around palliative support, hospice care, and managing that emotional shift when treatment ends and comfort becomes the focus.

Sending love and strength to everyone here — your posts have helped more than you know

Hi Edmund, I am really sorry to read above about your father in law’s situation. I can relate fully to that heavy, sinking feeling when you find that the current situation mirrors that prior to any treatment.

I will just tell you a little about what happened in our situation, in case drawing upon it is useful. We got to the point where we had a hospital bed delivered for downstairs (we really could have arranged this sooner as by the time it arrived my husband had to be carried downstairs by two ambulance men in a sort of mountain rescue type chair.) The doctor from the hospice and Macmillan / Community nurse were just brilliant and put Marie Curie nurses in place twice a day with Community nurses coming once a day( Community nurses were also available for night call outs when necessary too). All this, together with wonderful support from his doctor’s surgery made the difficult 9 weeks manageable. Towards the end we had the Just in Case meds and lots of additional visits. 
it is really tough as you know but with all the support you can get through it. My husband was able to stay at home until the end.

Accept all help and don’t worry about being a nuisance or persistent in calling people out at all hours or asking questions.As you will be advised repeatedly, do take one day at a time. You will get through because you do everything you can to preserve normal for as long as possible. I found my husband adapted to his worsening situation and we, I suppose, adapted too.

I hope you get all the support, practically and emotionally that you need.

Hi Edmund1

sorry to hear things are declining.  

In our case, after two and half years of scanxiety and video appointments it was almost a relief to be passed into the palliative care phase. It really lifted a weight off my shoulders as I then had a local phone number that I could call 24/7 if I needed help. Initially the GP organised the community nurses to reach out weekly and introduced us to the local community  hospice team. The community nurses used to call me weekly to check how things were. The community hospice nurse would come out every two or three weeks initially, occasionally bringing the dr with her. As the journey progressed, they came out weekly. G was passed off into the palliative phase on 27 Feb 2023 and within 48 hrs, we had this all set up and had the "just in case" drugs in the house. A DNR was also swiftly agreed and put in place. At that point the oncologist had said we had days/ maybe a couple of weeks. In the end, G was under palliative care for 8 months. He was admitted to the hospice for a couple of days in mid-August 2023 to bring his focal seizures under control so that was our first experience of in-patient hospice care. At the end of the journey, he spent 5 days in the local hospice. Those angels took great care of all of us. It really helped that we had got to know many over them over the months so that when the time came we were surrounded by familiar faces who knew us as a family. I couldn't sing their praises high enough. 

Hospice is a word that scares a lot of people but hospices really are the experts in end of life care and they offer support for the whole family. If its an option for your family, I'd look into it. G didn't want to die at home and to be honest, I didn't want him to die at home either. I couldn't fault the care he received in those last few months.

Even after the fact, the hospice wrapped their arms around myself and my son and daughter offering counselling to us all. 

Hope that helps to demystify the next phase of the journey, If you have any specific questions, please just ask.

sending you a huge virtual hug and lots of strength.

love n hugs

Wee Me xxx

Thankyou for your replies, its very helpful. The doctor has put him on a course of lomustine to "hopefully give him 3-6 months". However, they have not passed him onto GP- Palliative led care yet, which seems strange to me bearing in the likely timeframe, and seeming lack of success lomustine tends to have. 
I think it be better for FiL, my wife & brother in law to have plans and discussions now, however since we are still in 'active treatment' this hasn't been broached yet. 

Hi 

My late husband was out on Lomustine. He was in similar state in Feb 2023 and after 2nd surgery, he was put on Lomustine. It’s one tablet every month. In May 2023 we found that Lomustine wasn’t working. It gave us some time to prepare. Even though they told us not much can be done, in June 2023 they did a shorter radiation which again gave an extra 3-6 months time. In Jan 24 he was passed on to palliative care.  

When my husband’s tumour recurred, he too had lomustine (in combination with two others , vinchristine and procarbazine… from memory)

He was meant to have 6 cycles every 6 weeks but we only managed 2 before symptoms worsened significantly and the deterioration in his mobility meant we couldn’t even get to this hospital… we could no longer get downstairs at that point.

I am surprised palliative care hasn’t yet been offered. In our case as soon as it was evident the tumour was progressing it was put in place but explained as not end of life care( though it did quickly become that)

We found the Cancer Cenre and the GP very proactive in respect of it. Maybe it would be worth another conversation with them?

I hope things are put into place for you soon.