Hi all,
Last February my wife of 18 years was diagnosed with a Glioblastoma. She is 48 years old and has now had surgery, radiation and chemo for six weeks and now having six cycles of chemo. We have two boys 12 and 14 years old.
It's all very surreal. This is something I think you hear happen to a friend of a friend and you sympathise, not oneself
I am struggling to understand what this means. We have not been given a clear prognosis. Our surgeon says ignore the statistics in releation to life expectancy since the data is only accurate for older generations. This does not make sense since I online also find statistics for my wive's age group. After the latest scan the medical team said they are not exited, not disappointed but satisfied. She still has a mass in the brain which they do not know what it is. We have been told she will now post treatment keep having scans every three months. These scans are very emotional. IN fact every oncologist visit is emotionally draining.
I asked the surgeon exactly what it all means because I said my own research shows it is not good news. He responded saying he expects my wife to be dead in the next few years. I'm not even really sure what this means - 5 years?
My wife can run slowly on running machine and goes to physio, but sleeps alot and has a weird thing where on and off she feels her legs do not support her. Two weeks ago she started falling and I had to catch her. The oncologist thinks this is a side effect from medication
Our boys have been told we do not know how this will end and mum could die
I keep it together worried to let go because I don't know how quickly I'll get up again and the family needs me to keep the ship afloat. I think I'm putting it off until the eventual end. Some days I feel like just crying
I'm hoping she lives for many years, is that unrealistic? I have been offered a job where I work this week that I was doing for a month last year that is alot more pressure. Do I accept it because I want to be optimistic and think all will be ok for at least a few years or do I think not possible now? We have no family in our state. (We live in Australia). So many questions that I do not seem to be able to sort through logically
Sorry, alot of detail just needed to share it with a group of people who understands what I am talking about
Thank you for reading this, I am hoping someone is experiencing the same and can share
Hi Jarred and welcome to the Online Community but so sorry to hear about your wife’s diagnosis and the uncertainty surrounding her prognosis.
I was diagnosed with an incurable but treatable blood cancer in 1999 and I asked the ‘how long’ question and my consultant was very honest and said he had no idea.
He said we could line up a group of 10 people with the exact same condition, same age and same stage and the end result can be totally different.
My condition became very aggressive in late 2013 and I was given 2 - 3 years but we would try a different treatment and I am now 5 - 6 years past that date and living very well and my condition is stable.
I can honestly say that statistics are totally confusing and very inaccurate. If I look at my condition, age and stage I should not be talking with you today….. my Consultant said that I am in fact a statistics of one and it’s far better to live each day to it’s full and deal with tomorrow when it comes. I have in fact stopping looking short term and enjoy planning further in advance.
Each type of cancers can be rather different to you may find talking with others who are walking the same type of cancer treatment support journey will help you navigate this difficult time.
The New to Community is like the Community Reception area and as there are many cancer types and experiences so likewise the Community has many support groups so can I recommend you start of by joining our supportive Glioblastoma multiforme group as this will be a good place to connect with folks who may be on the same pathway.
Navigating the community will depend on the device you are using. To join a group just click on the green link above then scroll down and choose 'click to join' or 'join' on the page that opens.
You can then introduce yourself by putting up a post by clicking on ‘New Thread’ or ‘New here, say hello’ then hit the box with the X on the top right (phones).
You could just copy and paste the text from this your first post. You can also join in with existing ‘Discussions’ by clicking on 'reply'.
When it comes to the practical challenges of supporting someone you may benefit from talking with others caring for family and friends so do check out our Supporting someone with incurable cancer group where you will connect with others supporting family and friends
It’s always good to talk so do call the Macmillan Support Services Clicking here to see what is available. This service provides lots of cancer information, support or just a listening ear.
We also have Cancer Nurse Team in our Ask an Expert section, but do allow two working days for replies from our expert team.
All the very best.
HI Jarred
so sorry to hear of your wife's diagnosis. My husband of 26 years was diagnosed with GBM4 in early Sept 2020. He's 51 and a total fitness freak.
He had surgery to debulk the tumour followed by the six weeks if chemo/radiotherapy but then declined all further treatment.
It's a rollercoaster ride that feels unending. There are so many emotions, so many questions, so few answers.
The Glioblastoma group on here have been really supportive as have the carer's group. Something I've come to realise is that everyone's journey through this is different. Everyone reacts differently to treatment etc .
Not sure I can offer any great words of wisdom but what I can say is that my husband as given 12-15months in Sept 2020. We were told a few months later that the blood clots he had developed in his lungs post-surgery had reduced that. While his life has changed in many ways forever, he can still run. (He's a marathon runner) Two weeks ago he ran a half-marathon in London in 1:38:01.
Stay positive. Stay strong. Take things one step at a time but make sure you take time for yourself too. You need to be strong for your wife and your kids. Taking "me time" is essential.
love n hugs
Wee Me x
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