Hi,
My dad was diagnosed with glioblastoma stage 4 in his frontal lobe on May 2nd after what we thought was a mental health episode.
He had a large quantity of this removed (more than they initially thought possible) on the 18th May.
He remains in hospital due to mobility issues and has subsequently been diagnosed with a large blood clot on his lungs.
Today we have been told that they will not be progressing with chemo and/or radiotherapy because "it will only make things worse". Though they "will review in 2-3 weeks"
I cannot understand why there was some hope for treatment and now theyre just not progressing.
We've had nothing but issues with the care he has received, such as not showering, not getting him out of bed, not administering medication and not changing his catheter. These issues are raised with staff and the only reasonable response has been from a doctor who acknowledged and empathised with the experiences and asked that we report these issues because "the nhs is on its knees".
From others experience do we just accept the view that they wont progress with treatment or should we be challenging this?
Feel a little bit at a loss with it all and not sure what is right?
Thanks
Hi PiggilyWiggily
a warm welcome to the group, So sorry to hear about your husband's diagnosis and the issues you are having. I can empathise with you here.
My own husband was diagnosed with a GBM4 in Sept 2020. He developed multiple small blood clots in both lungs about 2-3 weeks post surgery. These were treated with blood thinning injections for 12months. This was before his treatment cycle was due to start but it was only months later that we found out that blood clots can compromise the effectiveness of the treatment.
Personally I would challenge his team and ask all your questions/raise all your concerns until you get an answer that satisfies you. Write the questions down beforehand and take the notes with you. It'll help you keep on track as I appreciate only too well how overwhelming these appointments can be.
We've had a rough ride through the NHS too if I'm being honest and personally I'm a tad disillusioned with them. We've been referred through 4 oncologists and 10 separate hospitals over the past 22 months, have found out key information in letters months after the fact and not had a consistent straight story from any of them. My husband is a control freak so doesn't like me asking questions in his appointments. The NHS staff also won't tell me much without his permission and he won't grant that so I'm piggy in the middle. It's beyond frustrating at times so I get where you are coming from. The "NHS is on its knees" is no excuse in my book.
This group is a really safe supportive space so please reach out anytime. You're not alone here. There's plenty of folk around to listen, offer their words of wisdom, hold your hand and offer that virtual hug when its needed. You might also want to join (+) Carers only forum - Macmillan Online Community. That' another group that I've found to be a great source of support.
It’s always good to talk so please remember 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.
I hope this has helped a little. If there's anything else I can do, just ask. For now though, I'm sending you a huge virtual hug. Hang in there. You're coping so much better than you give yourself credit for. (You're just going to have to trust me on that one) Please make sure you take care of yourself too. I'm not going to lie, this is a tough rollercoaster ride, so please take time to look after yourself. Taking me time isn't selfish, its essential, even if its only 10 minutes to sit down with a book and cup of coffee.
love n hugs
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
