Carcinomatous Meningitis / Cancer in the Brain + Spine

[pmcpmc]

Hi all. A little bit new to this site, however I'm just wondering if anyone has experience they can share regarding secondary cancer in the brain and spine. My father has had a long standing battle with so many types of cancer (pancreas, bowel, lungs, breast, bone and brain) and in the last fortnight we have been given the devastating news that it has spread throughout the lining of his brain and spine. The deterioration, (after such a long fight; going on 7 years after a prognosis of no more than 6 months survival) has been rapid and in the span of the last week he is now unable to speak, comprehend, walk and care for himself in any way. WBRT has been suggested as a palliative treatment and was started yesterday however I am finding it difficult to grasp how quickly this is progressing. If anyone has any knowledge or experience with whole brain radiotherapy as a treatment I would be grateful anything shared. l feel so very much in the dark as to what to expect and how to help him in what i fear, is his last few weeks. Thanks and take care all. Peta

[Hopeful]

Hi Peta, I just replied to you in a different thread before I had read any of your dad's back ground info. Now that I have a better understanding of your situation I just wanted to say a few more things.... Firstly, I understand your fear of the situation, it is so scary. BUT now that I am through the other side, I realise I did not need to have so much fear. If you have a good palliative care team then the best thing I recommend is handing all your fears and stress over to them and just be there for your Dad. Its hard to imagine what he must be going through but having you right by his side will most definitely be helping him. I had a lot of conversations with my husband (even though he could't respond) about giving him permission to let go etc. To help somebody through this awful time in their lives is such a privilege and really goes to prove the strong bond and love that you and your father must have for each other. The other thing is to trust your gut instinct. If you feel as though your dad is uncomfortable or stressed in anyway, then ask for help. And by help I mean more medication! I think the reason my hubby was so comfortable was because they kept him medicated appropriately. Now is not the time to hold back on the med's!! You know him better than they all do so you will be the best judge of his comfort. Your Dad sounds like he has been through so much in the last few years so if this is his time to go, then let him go. My hubby was only 34 and I was so mad that he was dying but once he passed I just felt such a sense of calm for him. After seeing him suffer so much it really did seem like the better alternative was death. It is not fair and doesn't not really make sense but I feel as though you get to a stage where you just have to let nature take its course and stop fighting the fight -as it is so exhausting for both of you. After what your dad has been through I do think it may be kinder on him that this stage is moving fast. As hard as that it is to accept for you. Anyway, I am sending you all the love in the world. Please get strength from the fact that other people have been through this and are still standing, and we really feel for what you are dealing with. xx

[pmcpmc]

Hopeful, Thank you so much for your messages, I cannot express enough how much it means especially given your own grief and loss at the moment. It really is scary, and whilst so many of the symptoms on the brain hospice website fit accurately, like you’ve expressed was similar for you, the timing is a little bit all over the place. There are some things I’m watching with my dad that indicate we have so little time, and others that fit perfectly. Gut instinct is amazing and I’m grateful for the fact that currently, he is in very little pain. Food is our main issue right now and even getting him to try the high protein shakes the nutritionist is trying to push is a battle. He has been through so so much and before things took hold so quickly in the past week, he told me he has had enough and wants to go. We have had so many talks over the past year in particular and I feel he has made his peace and is ready. You are right, it is kinder that this is happening quickly and he seems quite unaware of it all most of the time. I have bouts of wondering if I’m imagining this, but now that there is less dramatic difference in his condition each time I see him I know that we are nearing the end. I AM petrified for so many reasons and at the same time I'm not (if that makes any sense at all?) Some moments and fears seem selfish in the sense of ‘what am I going to do without him’; he raised me alone and has been my best friend and only parent for 33 years. Even now I’m struggling with not being able to talk to him. I’m also so so worried for my two boys (11 and nearly 13) who have the most special relationship with dad. How I’m going to manage this next phase is beyond my comprehension, not just for me and my own grief but how to care for them as well and make sure they get through it too. Thankfully I have wonderful support in my partner and his family, and wonderful friends. Right now its hard to tell anyone exactly what they can do to help for I simply don’t have the answer. I am all Dad has right now (what’s left of our family are interstate and unable to do much here in Melbourne). Day by day and one foot in front of the next is all I can really do. Thank you again for showing me that I will get through his and for sharing your own experiences. I can’t really say how much it helps at a time that I fear no one really understands or knows what to do. Much love to you and your little one. X Peta

[Hopeful]

Oh I am so glad I was some help to you. It is hard sometimes to know if you are saying appropriate things as none of us on a chat site no each other. I was hoping I had not scared you to much with all the the talk on dying. I know I used to find it extremely hard to talk about it even though I knew it was coming. How is he going today? Things can change so much in such a short time. How is the food thing going? My husband survived on only those drinks for the last few months of his life. He hadn't eaten real food for ages. You may want to discuss with the medical team about your options for stopping his oral intake all together. Sometimes you have to bring these matters to their attention yourself. If your gut tells you that this is his time, (and from what you said, your father is ready if it is his time) then maybe it is kinder to stop the drinks. It is inevitable that he won't last too much longer once the oral intake has ceased. It is a huge decision and was one of the hardest days of my life, when I had to decide this for my hubby. But it is that whole 'you have to be cruel to be kind' thing. It seems so wrong to stop trying, especially if he is still fairly conscious. But I really think, in our case anyway, that it was the right thing to do. It kind of speeds up the process of the inevitable. Your dad may even have stopped his intake by physically not being able to do it anyway by now. So glad you have great support from your partner and family etc. That was the worst thing for me, I was dealing with the hardest thing ever in my life and I was doing it without my husband. Yeah I have family support etc but its no where near the same as having my man :-( I am actually a registered nurse and because of my hubby's illness I am now a bit of an 'expert' on this topic so please feel free to fire any questions you may have my way. Anyway, not having the best day myself so will leave it there. Lots of love xxoo

[pmcpmc]

Hi hi. A bit of a delayed reply thanks to a weekend of interstate visitors and big decisions. Dad has steadily declined over the past few days. More periods of ‘unresponsiveness’ and various other signs that the brain is struggling and under significant pressure. I’ve had steady meetings with the social worker and today (based on a family decision with his sisters whilst in Melbourne) we have decided to cease radiotherapy. Initially we were planning to move him to a palliative hospital once complete but have now made the tough decision to do so earlier. There has always been a sense of doctor’s using dad as a bit of a scientific guinea pig so that stops now and we focus on comfort for however long we have left. I was able to speak to dad about it this morning, whilst he said ‘yep’ I’m not sure he was that aware of what I was saying but we feel it is the best decision. He deserves some peace, quiet and experienced care from here on in. They were unable to even tell me why they’re doing WBRT when he is this far advanced so that made the decision easier. One oncologist was an arrogant twit and implied I was making ‘a seriously bad decision’ the other however, who he’s been in the care of for some time, agreed and gave her recommendation that it was for the best. Pain medication has been increased, including ‘breakthrough’ meds now. He seems to be more uncomfortable each day which is to be expected I suppose. Feeling a bit numb today – so many big decisions being made – some I feel ill-equipped to make and others I just wish I simply didn’t have to make them. Family and friends can be supportive but like you with your hubby, I used to talk to my dad about EVERYTHING so there is a massive void present already. I’m struggling with that at the moment so I can understand that one too well. I hope that the difficulties on Friday gave way to a nice weekend for you and your little one. xo Peta

[Hopeful]

Scared to ask......how are things? xxx