desperate- chemo

So sorry you and your family had this experience Paige. We had two oncologists over my wife's treatment and they were both very good at talking to my wife like a valuable person even when they did decide to withdraw treatment. 

I can only speak from my experience as to how we were assessed. When her symptoms started to recur 18 months after surgery the MRI had already suggested that the tumour was active again. The oncologist and CNS asked questions to assess overall health status and by that point her mobility was worsening and cognitively she was struggling to focus.

They did put her back on temozolomide for one cycle as she had previously shown no side effects to it. At the next meeting a month later though the symptoms were still getting worse and so we decided to withdraw active treatment as it clearly wasn't being effective at stopping it.

In our case that meant being referred to hospice care which by that point was a relief as all I cared about was making her comfortable. She just didn't have the energy left to fight it anymore.

I'm sorry if this is upsetting to read by just wanted to be totally honest.

Sending you virtual hugs,

Chris

HI Paige

I am so sorry to hear about how you were treated. We had a rocky road with the 4 oncologists that G saw throughout his journey so I can empathise with you here. Hopefully on Monday you will have a more pleasant experience.

Something you need to consider and I don't mean to be cruel, is the quality of life versus the quantity. The chemo is usually oral and a drug called Temozolmide. It comes with a long list of potential side effects but the key ones are fatigue and nausea. You also have to consider what that drug will do to your dad's immune system. We had this discussion with G in Nov 2022 when the oncologist suggested he try TMZ to slow his tumour re-growth. At that point the MRI had shown that there were several new smaller tumours developing. When we explained to G that he would need to potentially restrict going out to public places with friends for fear of infections, he refused to take it. At that point we had been told it only had a 1 in 3 chance of slowing the tumour growth so the odds weren't great.

Ahead of Monday's appointment, can I suggest that you and your parents write down all your questions, fears, concerns etc about the journey ahead and take those notes to the appointment. These early appointments are quite overwhelming.

We were passed into the palliative care phase on 27 Feb 2023 and while it was initially a distressing thought, it was the best thing for all of us. The care G got from the local community nurses and community hospice team was incredible. Hospice is a word that terrifies people but it really shouldn't. Those nurses are angels in disguise. Over 8 months we got to know the team, G got the best of care (weekly / fortnightly visits/phone calls ) and for me it meant I had a phone number I could call 24/7 for help and support if I needed it. Just having that number lifted such a huge weight from my shoulders at the time. When the end of the journey approached, it was tough but we were surrounded by people who knew us and weren't faced with strangers. That made a huge difference.

I don't want to distress you further at this difficult time but like Chris, I want to be open and honest with you. 

A glioblastoma journey is an emotional rollercoaster ride for all involved and its a tough gig. I'll not lie about that.  You need to put your dad's needs/wants at the heart of things here and not your own and respect any decisions that he reaches whether you agree with them or not... and that bit can be incredibly hard. I get it.

sending you all love and light and hugs

Wee Me xx

I had an assessment yesterday, to decide if i was ok to continue with chemo (which I obviously am) . Started off with me having to recite the whole history going back to April  As this must be on record I assume this was to check my memory! 
Then a lot of questions a bout how I am, any sde effects. 
Then the usual random questions like who is the PM , what year is it etc. Holding up a pen and asking me what it was! 

Then a physical exam, strength tests, walking around the room etc As I work full time and my hobbies are skating , playing the piano , this wasn’t challenging 

Then just said she would authorize the next two months tmz and a scan for March. 

Although my care is good its a bit disjointed as I go to 5 different hospitals and have seen a lot of different doctors. 

Good luck 

I wasn't aware that was any real assessment, however in my husband's case he's still working full time so from that I presume they assess he has ability.I have only sat in on a couple of appointments with my husband as he usually attends them himself but from him I gather they are fairly positive.

I'm sorry you've had a bad experience, I guess different doctors have different approaches and that doesn't suit all.

Hi Paige Xx 

I’m so sorry you had this experience, that must have been horrible.

Sounds like the Dr was being maybe too brutally honest and didn’t consider that this is your family and your life. I suppose they see it often and they know the nature of the beast. 

It’s so distressing as a daughter suddenly seeing your Dad in such a vulnerable position, I will never forget our conversation with the Drs. So surreal… and getting all the facts was hard to take on. I felt like in my Dad’s case they were slightly encouraging the ‘do nothing’ approach, but they were also receptive to my Dad saying he wanted all the treatment, and luckily he was in a position to receive all 3 treatment steps.

I think WeeMe does make a good point about quality of life but I also see the reasons why you would want the chemo for your dad. The treatments being offered are life prolonging, but that’s it… It’s important that he has the best quality of life possible and the chemo can be rough… and GBM is stubborn. Maybe the Drs are concerned it won’t be effective enough to warrant putting him through it. I suppose just wait and see how the meeting on Monday goes and hope this Dr has a little more compassion. 

Sorry I can’t offer any help, but I totally understand how you must be feeling. The helplessness and desperation and you just want the best for him. 

Thinking of you all and hope the appointment goes ok Monday. Xxx 

HI Paige.

You were on my mind,... just wants to wish you luck for tomorrow's appointment. Hope it goes as smoothly as these things can.

love n hugs

Wee Me xx

Hi Wee Me,

not good news unfortunately. my dads platelets have dropped and they cant offer chemo as it would drop his platelets more. there is no chance of platelt transfusion as they said hes too poorly. macmillian nurse came to see us and says she thinks he has 2 weeks left. we  are utterly heartbroken the deterioration has been quick. we will not be attending the appointment as we know he will be refused chemo and its just hassle getting him up to the hospital. this is a truly horrible disease. F*** cancer!

thank you so much for your reply. you are right i understand the Drs see this everyday but i wish we had more compassion. this is our lives hes not just an NHS number on a spreadsheet. Hes a husband, a brother, an uncle and a bloody good dad. I just get the feeling they like prolonged the biospy results as they know the inevitable. I just feel like he shouldve had a chance at at least one of the treatments its horrible. I would never wish this on my worst enemy.

thank you so much for the reply xx

yes i think that is it. i just wish we had  a little more compassion as that what he deserves. 

thank you for your reply xx

Hi Tashie,

thank you for your reply. I wish you all the best in your treatment. I think different doctors have different approaches i just wish we had one with a bit more compassion xx