I’m thankful that I’ve found this group and reading through your journeys on here has given me some comfort today. I wish each and everyone of you all the very best in these rollercoaster times.
It’s been a whirlwind 6 weeks since Dad was diagnosed with his tumour. He had his own garage and had been a motor mechanic since he was 15. Fit and healthy up until 31st March when he finally retired from the job he loved doing, he is now 72. Two weeks after retirement we thought that it was maybe the start of dementia to begin with but after a scan we went to Oxford to meet his consultant. His consultant was very blunt and told us that if Dad had an operation, this would be his best chance of getting 12-18months. He had his 6 hour awake craniotomy operation nearly 3 weeks ago now and was amazing throughout. Thankfully his speech wasn’t affected as that was a great concern and at least 95% of the tumour has gone. The consultant surgeon and his colleagues were absolutely amazing and we cannot thank them enough. We were on cloud 9 ready to fight the next stage until yesterday when we met the oncologist. She said it was more likely to be 8 months life expectancy. With Dad’s age she is doing a reduced RT over a reduced time of only 3 weeks. We’re still waiting to see if the tumour is resistant to chemo at this time but keep being told that due to him being over 70, it probably won’t be offered or work. It was a bit of a kick in the teeth yesterday and Dad’s first consultant rang us to say to not give up hope or fighting. He said you can’t put a timescale on it. Where do we go from here? We are a strong family and our dark sense of humour gets us through this most days. But today I feel at a loss and my Mum is googling everything and has come up with CBD oil. Does anyone have any experience of using this product. We know the outcome but we just want to give Dad the best chance of more quality time with us. Thank you for listening to me and take care.
just spotted that no one has replied to you yet.
So sorry to hear about your dad. As you've said it's a rollercoaster ride - one we've been riding since early last Sept and are still clinging on!
My husband(aged 51 and a total fitness freak) was diagnosed with a GBM4, had the awake craniotomy to debulk the tumour then 6 weeks chemo/radiotherapy. He chose to decline any further treatment, a decision I need to respect.
Everyone is different and reacts differently to different parts of this journey. Hold onto that dark sense of humour! Ours has certainly helped us as family.
You asked about CBD oil - my husband hasn't tried it but I have for an entirely different reason. I tried it about 2 years ago to help cope with the chronic pain caused by a lipoma in my side that was pressing on a nerve near my rib cage. It certainly took the edge off it until I had the thing surgically removed. I was cautioned by my surgeon though that it can impact the effectiveness of some medications so I'd strongly advise checking with your dad's medical team before trying it. My son has also used it for anxiety and found that it helped there too.
We're now 11 months into this journey- my husband is still able to run (albeit slower and over shorter distances), he cycles (not sure he really should be as the tumour impacted his eyesight but you try stopping him!) His tumour impacted his speech/language and understanding. He is easily confused, can barely read any more and can only follow simple instructions but he's still with us. There's stubborn and then there's him and I suspect that attitude helps too.
hang in there. Love n hugss
Wee Me xx
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Hi Wee Me. Apologies as I wasn’t able to respond to your comforting message until now. Your husband sounds amazing and so do you. Thank you for responding to me as I now feel that I’m not alone. The chats on here are giving me lots of knowledge and inspiration to carry on and keep fighting. Dad gets his mask made this coming week and I’m hoping that the treatment starts the week after that. Take care x
hope the mask fitting goes well. They do fit very tightly. My husband frequently complained that they'd squashed his nose with his during his 6 weeks of treatment. He also got to take it home at the end of the 6 weeks. He wore it in the car on the way home and scared the living daylights out of a woman on a bus that I was stopped beside at traffic lights!
hang in there
love n hugs
Hi everyone, I picked up your title as my dad was 72 when diagnosed on Aug 17th with this awful disease. Mum was told there were 3 and it was highly unlikely to be primary because of that reason so he had 1more scan to see anything else but nope it was the primary one. With 2 offshoots.
I am purely writing to see if you were offered different treatment as I am trying to get my head around why my dad was not offered anything and we had a weeks wait in our general hospital where he was ok apart from memory loss & speach difficulties. Then sent home, all this time being told to see what the Oxford consultant had to say. It sounds as if we may have had the same consultant- no sympathy at all and vey direct. Assumed we knew alot more than we did & bluntly told us an operation was out of question as was chemo. Palliative radiotherapy was our only option but after seeing him she has decided not to. We were told the prognosis, as my lovely dad who wouldn't hurt a fly was in another room as we did not want him listening.
So I have asked his consultant if he was 20 years younger would he have been offered treatment? You mentioned about your dad being in his 70's, why does that effect the outcome? Nothing has ever been explained to us.
I am so sorry you are going through this. We were informed to have radiotherapy my dad would have to attend a meeting to discuss, then a meeting to decide where to direct the radiotherapy (2 weeks) then another for mask fitting. Then another week later to start radiotherapy which the first 2 weeks usually make the tumour worse or symptoms worse. Is it just pot luck which hospital you are at? This was an oxford consultant so he' have to go to Oxford.
Hi there. I’m so very sorry to hear your news too. My heart is truly breaking for you as it sounds like you’re none the wiser after your meetings and scans. The surgeon we had was very direct but we wanted him to be. I went in armed with a mountain of questions and he had already answered them before I had a chance. I guess we had a lovely guy. Dad has the one tumour and we were told that if he had it removed when asleep he would loose his speech and mobility. This would be no life for him. I spoke to the surgeon and thankfully he performed an awake craniotomy which really helped Dad as he came out better than when he went in. I’ve read a lot about this awful tumour and maybe those offshoots are growing into an area of the brain that wouldn’t give your Dad any quality of life. It would be helpful if they explained that to you. With regards to being over 70, I’ve learned that the young 70’s are classed as the young elderly. Lots of trials have taken place and the reason they offer reduced chemo and radio is that having 6 weeks of this treatment provided no better outcome than 3 weeks treatment. It took me a while to get my head around. After the initial horrible meeting with the oncologist, Dad was thankfully offered 3 weeks of RT along with 5 days of chemo. That was a month ago and he’s just started his second dose of chemo today. We were so grateful that he got this chance.
I think you’re saying, do they not care about the over 70’s and I thought that too. When you’re waiting for appointments and going for blood tests, scans and then back and forth to Oxford, it is draining and you feel like everything is slipping away. I’ve come to the conclusion that they will do the right thing for you if it means quality of life.
This is one hell of a roller coaster ride and I’ve finally decided to just take one day at a time and appreciate Dad still being here. We’ve had plenty of tears but we’ve also laughed. I’m putting my energy into planning just little things to keep him motivated and enjoying life. He’s coming over tomorrow to watch football with my husband and I can take my Mum out for respite. I really hope that you get some answers and will be thinking of you and your Dad.
Please keep in touch. This channel of communication has been great for me as it’s very hard to talk to my family directly about how this affects me.
Thank you SO much for replying & all your info it has helped me already.
We had a lady oncologist from Oxford who we were told multiple times had over 25 yrs experience in this. She gave us dad's prognosis even though we did not want to know & it was awful to hear. Dad literally lost his memory (or parts of it) and how to talk sometimes but could say certain words. He was bed bound 1 week after diagnosis with mum trying to get him to the commode constantly in hospital & then a week at home like it. He could walk OK for the week in hospital. He was diagnosed on 17th Aug and stayed in hospital for 1 week and it seemed like he just could not talk properly and was weak on one side. He passed away on Sept 11th. I am so glad that your dad had treatment and still able to function & laugh etc, that is wonderful for you. All we can think of at the moment is my dads was so severe there was just no time. It was alot less than what the consultant told us. I am awaiting dads medical notes still after my last phone call meeting with the consultant team. But thank you for your info it has helped me & I will let my mum know who is at a loss as to why her husband who was perfectly fine 2 months ago has now gone.
Take care too & enjoy your time with your mum this weekend! x
Hi, I’m truly sorry to hear of your loss. It’s been a whirlwind for you to deal with all that in such a short space of time. No wonder why you have so many questions. I keep questioning if we saw anything coming before Dad retired in March as his memory, speech and gait all changed so quickly. We thought he was just having a breakdown. This cancer is cruel and despite all the experience of the consultants, they don’t really know how someone will react to the treatment or how long they have left. I just pray that we have more time than they’ve said and quality time at that.
Once again, I’m truly very sorry and want to send best wishes to you x
Thank you, for your kind words. It sounds more positive for your dad. Yes quality time is needed. Thank you once again, thinking of you,.
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