Incurable, not yet terminal - complete lack of energy

[Seeingred70]

Hi all. My daughter (16) has got multiple small metastases to her lungs, plus a malignant celiac node. She’s been on Temozolomide for two months (5 days on, 23 off) and they think her tumours are responding. She’ll basically be on this until it stops working, then they’ll try a different drug, but there are very limited treatment options for her cancer, and hers is quite aggressive, so no one has any idea how long she’s going to have (feel sick typing that). She is exhausted - she has been for months, long before her primary tumour was found and removed - so much so that she spends most of her time in bed, often asleep. I’m terrified that she’s going to die having done nothing that she wants to; I’m scared she’s waiting to feel better before aiming to do any of things she talks about doing, and that that time isn’t going to come. I’m scared I’m failing her by not saying this out loud but I’m scared to say it out loud in case she sinks into despair. She’s knows her cancer can’t be cured, but I’m not sure she really believes it, deep down - I’m not sure any of us do. I’m assuming it’s a survival strategy. I don’t know how to help her.

I realise these options may be incompatible with her chemo and/or other medical issues, but just wondering if her team has discussed possible IV iron infusion (top up the iron stores all in one go, in a single hospital outpatient visit, and stop having to take oral supplements which have so many nasty side effects), and possibly a better but still gentle sleep aid such as promethazine? Again, please just disregard if these would be unsafe or unsuitable for her.

Thanks @verysmellyjelly . I might ask about the iron. Have been talking to them about sleeping tablets - they are willing to prescribe, but at the moment, my daughter is not on board (this is where the PDA/ASD starts to complicate things. I’ll like into promethazine though, in case she warns to the idea.

Just looked it up, and I think it would be contraindicated because she takes ondansetron on chemo days and fluoxetine every day.

If her energy levels are up to it, most of the theatres/shows in London have understanding of accessibility. I went to see Stranger Things a couple of weeks ago and there was a guy behind me in a wheelchair with a carer and the staff were brilliant at getting him sorted out. All the best OP

It's possible her young age might make them more cautious about interactions. I take ondansetron most days, though, and a similar medication to fluoxetine every day, and regularly have promethazine with it. However, I'm an adult and may be much bigger than your daughter as well as having different diagnoses. I definitely don't mean to pressure you at all. Oddly, I find sometimes doctors are very worried about interactions and other times things that pop up as interacting, they are actually fine with. But I wouldn't be surprised if they were much more careful with your DD.

Make sure you tell her all the lovely things we often don't say, about how much you love her, all the gifts she has brought into your life, how proud of her you are. Try to make each day include some pleasure. Try not to nag her about meds, food etc. You know her time on this earth is limited, try to focus on quality of life now. I speak as an older person who has lost so many people including, recently, my son. I wish I hadn't nagged him so much to take his meds etc etc etc. Sending you strength.

One thing I found very hard when my son was dying is to accept that all he really wanted was my company. To be able to tell me whatever he needed to tell me and just enjoy the time spent together. He enjoyed giving whatever he could to me, rather than me doing anything for him. Two days before he died he walked around his local supermarket and bought me whatever I wanted to eat. He couldn't eat anything at all himself by that stage! It gave him pleasure to please his mum. It's so hard. My heart goes out to you.

Not sure where you are based but can you get to the Eurostar at St Pancras without changing? First class on the train would be a lot easier than flying as airports are exhausting just thinking about it, writing to Eurostar and explaining the situation might mean they can streamline boarding etc. 2 nights in a lovely hotel and contact anywhere you are visiting so special arrangements can be made to skip queues etc. I’m sure people will want to help you make this dream come true. Alternatively small airports can be very easy and again they can give you help to make it even easier, could a wish making charity help even, private jet!

Remember to take care of yourself!

@Joystir59 that is almost unbearably beautiful. What a wonderful son. I’m so sorry for your loss. Thank you for sharing that with me ❤️

I googled PDA - I can see it is a form of anxiety and sounds like hard work for all concerned in an otherwise healthy person let alone in a situation as stressful as this. Do you have to have strategies to get DD to have the chemo?
Do you/she have psychology support via hospital? I used DD’s sessions (which she refused to attend (on Zoom) to discuss how to support her with the psychologist. It was helpful
for me to share my concerns with someone else. (So even if she won’t do it, you could).
The only other thing I can think of is Teens Unite who have online gatherings. My DD was a bit too young but did do some of their stuff.
Or Over the Wall do online camps.

The PDA is the biggest challenge she faces, without a shadow of a doubt. I haven’t had to find ways of getting her to take her chemo, but she did refuse/delay treatment for a while, and it very much had to be her decision to accept it and plan the timing of it. I also think it prevents her from engaging in strategies to manage some of her symptoms, so, for example, getting her to eat regularly to help manage her nausea is really difficult, because even a request as to what she’d like is felt as pressure, but me choosing for her would also be a demand/threat to her autonomy. I think some of her tiredness is inertia, because she knows she needs to take action (get up, dress, move), but can’t - she will literally spend hours working up to it. No, she doesn’t receive psychological support from the hospital, but, to be honest, I’ve yet to meet any professional whose advice worked - her CAMHS psychiatrist just used to tell her to power through it! Thank you for your suggestions - I really appreciate it!

Gosh my stomach flipped reading this.

My heart is breaking for you both. You sound like the most wonderful Mum. I would just focus on small things. Getting outside even for a few mins fresh air if she's able.

I hope you will get to do some of the things she would like to see and do. Sending you all my love x