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'm really sorry OP, that's unimaginably tough. What kind of thing does your DD want to do? Could you do one thing spontaneously this weekend?

My god that is unimaginably shit, OP, I'm so sorry. Do you have any inkling of what's on her "bucket list" for want of a better term?

She’d like to go back to Paris and visit the Louvre; she’d like to explore London a bit; she’d like to go to a concert. She hasn’t really had an adolescence - first we had Covid/lockdown, then her mental health took a nose-dive until we realised she was autistic and she started to recover, then the fatigue hit and it took a year of fights and gaslighting to get to the point that her tumour was discovered. She’d also like to learn to drive - she has a provisional licence because of the mobility element of PIP; I’ve sorted a few lessons but she just can’t manage it; she’s wiped out.

For the driving can you do an "experience day" hour session or insure her on your car for a few days for her to just have the experience of trying it without too much pressure?
That might be a low effort start to tick something off

Oh my goodness I am so sorry to read this. Could you maybe book a concert or trip to Paris and go for it factoring in rests or maybe even a wheelchair if she is too fatigued?

I can't even imagine what you're dealing with. Sending you much virtual love. Could you return to Paris but do it incredibly slow, giving plenty of time to rest, yet giving your DD the chance to see the things she wants to see again.

How about starting with a concert? It might be doable If you can find something fairly local to you so there is minimal travel.
And if your DD isn’t up to it at the last minute well, just let it go then. Sometimes even making a plan is an achievement.
Baby steps?

Thanks all. I’ve actually found the loveliest driving instructor, who knows the situation and is keeping a slot free for her on a Sunday, if ever she feels up to it (she needs an automatic car - coordination is an issue - so can’t go out in my old banger). At the moment, if she sits up and plays a board game with me for an hour or two, she’s zonked, so it’s a definite no to trips at the moment. I’m talking to her about steroids, just to give her a bit of energy, but it’s a hard no from her (her doctors are willing to try it). I think planning the trips is a good idea though - will plant the seed. Thanks again.

This must be unimaginably hard I’m so sorry OP. Have you contacted any charities, they may be able to arrange trips with adjustments to make it easier for her. Sending unmumsnetty hugs for you 💐

Gosh, it sounds so hard. Maybe planning the trip will plant the seed, and of not, it's fun doing the planning, right? Maybe that will get DD switched on to the idea of steroids?

Hello. So sorry to hear this. My DH is incurable but not yet terminal. His cancer is not treatable. Can't be cut out (too risky), doesn't respond to chemo or radiotherapy and no immunotherapy options available.

We've only been going through this for a couple of years so far, I'll tell you what he has found helpful, as far as I'm able. He's been doing lots of reading and has made some changes as a result. It's all about supporting and boosting his immune system, reducing pollutants, chemicals and hormones that he might come into contact with.

Sleeping a lot can be mental health related, but it can also be exhaustion as the body is using all its energy in trying to repair.

Organic, unprocessed food and natural cleaning products as far as possible and he's cut out any added sugars completely. He also takes supplements, the everyday ones are Vitamin d with k2, vitamin c, and a berrocca daily. There a couple of others he's trying, lions mane is one. He tries them for a couple of months and decides if he'll carry on based on whether he thinks it's made any difference to how he feels. psyllium husk is another daily one. Tries to eat a lot of ginger and garlic.

Drinks filtered water all day. Coffee is decaf organic and swiss water processed. Wine is organic and a mix of red and white. Herbal teas.

Washes with organic soap, and we've switched to the most low chemical cleaning/laundry products we can find. Doesn't use deodorant, just washes more frequently.

Fasting. Once a week for 36 hours, but he doesn't stress if we don't manage it every week so I think it's one of the things that is good if you can but not as important as some of the other things he's doing.

Being outside as much as possible. We live in the countryside so I suspect this wouldnt be the case if we where in the city as it might not be as healthy. If he's inside he'll often have a window wide open whatever the weather. He spends a lot of time in the garden.

Meditation and journalling to support his mental health. Pilates to support his physical health, in addition to our daily dog walks. I think he intended to do a bit of strength training too, just hasn't started yet. If he's got a bit stressed at work he'll do something for that he knows destresses him, like reading.

As much sleep as he wants. I notice a huge difference on the days he has to get up earlier than normal, his energy levels are much lower, more than I would expect to see.

Routine. Doing the same things in the same order and time every day. Apparently it's less stressful on the body and mind and takes less energy.

Wishing you all the best.

Hi OP, the Louvre do a virtual tour online. Apologies if you've already seen it.

You sound like a great mum. So sorry you are going through this x

Hello OP. I am so sorry to hear if your daughter. It is unbearably hard.

My DS has a different type of tumour and cancer and, at the beginning, his fatigue wasn't as bad as your DDs. I asked if he'd be well enough to take on holiday after radiation. The nurse encouraged me to go, saying, as sick as he was, it was the wellest he would be for over a year. (I am actually glad the nurse told us that. She was right.)

He couldn't walk and needed a wheelchair., his skin was burnt to shit on the outside and on the inside, every part of him hurt from being burned with radiation (which made things like swallowing very painful). But the two of us went overseas. It wasn't a typical holiday, but it was good for both of us and, to be honest, I didn't know if he'd live long enough for another one. We stayed in his favourite place and went out in his chair maybe once or twice a day, for an hour or so. It exhausted him further, but made him happy. He loved seeing familiar places and even going to his favourite cafes. He slept and rested a lot, but was happy to be away.

I don't know if something similar could maybe work for your daughter. Does she have a wheelchair? Could you do something like stay in a nice hotel in Paris for 2 nights, then push her along the Seine for an hour in her chair, then go back to rest and have room service? (Or do the same in London, if that's closer. If you can afford it, the Rubens is lovely and right near Buckingham Palace and St James's Park.)

I hear your worries. If she is not in a place where she would cope with something like the above, try not to worry that she is missing out. I frequently have the same worry about DS, but I remind myself that, at the end of the day, what he likes most is to be with me. I try to remember that he loves just cuddling in bed, listening to me read him stories or paint with him. As parents, it's normal to want to give our children everything we can, but what means the most to them is being with us. So keep playing board games with your DD and know that for now, it is enough. X

@C152 that’s such a lovely message, thank you. I might hold out for the hotel in London/Paris, but yes, you’re right - she does like just being with me, and I probably need to try just being in the moment more with her. Thank you!

So sorry to hear this, sending a virtual hug.
If there’s a concert or venue in mind you could contact them to see if they could help. I sorted this for our daughter who had a musical booked in London. When the tour was more local they had reserved seats where she could have gone in her wheelchair. They will have accessibility policies. Sadly she wasn’t well enough.

Have you thought about a virtual reality headset for some experiences? The hospice brought us one but she was too ill. Wish I’d sorted or thought of it earlier.

Spend time together as PP said watch/ listen to things favourite films etc. I did pampering, foot massages with Lush peppermint cream, painting nails etc. used chalks to do rainbow hair etc.
In the early stages steroids especially a drip really helped with fatigue.
Look after yourself as best you can.

Fuck OP, that sounds unimaginably tough and I am so desperately sorry for you and your beautiful DD.

My DD is sadly missing out on her adolescence due to a very serious and likely lifelong MH condition. Clearly this is absolutely in no way comparable to what you are dealing with, but I can in some small way relate to the sadness of all the opportunities that have been and gone, all the time that cannot be brought back, and how different her life looks to what we imagined for her when she was a little girl.

All I wanted to say was that if I let myself think of all that things she 'should' be doing that she hasn't done, cannot do, and will probably never do, I feel utterly overwhelmed with the sadness and futility of it all. When I let go of those feelings and concentrate on the moments of happiness we can create for and with her, it feels just a little less...pointless, I suppose is word. Even if it is something that to other people would be trivial, like curling up with the cat or sharing a film we both enjoy. I hold on to those moments and focus on the fact that even when the big picture is quite bleak, her life is worthwhile and has meaning.

I don't know, I hope that doesn't sound tone deaf, I do cling to the fragile hope that DD will recover and it must be unbearably hard when recovery is simply impossible. Wishing you both the very best.

For severe fatigue, would she be at all open to using a reclining wheelchair? Although they are obviously still wheelchairs and not even as "cute" as a lightweight coloured one, it can facilitate movement a bit if she doesn't even have to support keeping her body in a sitting position (head, legs etc all supported in the chair). I have used these chairs in the past when more unwell and they were a godsend.

I'm so sorry your daughter is so unwell, OP. I don't mean to be crass by offering a suggestion. If it's unwanted or useless, please disregard.

@24Dogcuddler virtual reality headset is a great idea - thank you! I’m sorry you’ve been through this too xx

@notwavingbutsinking - absolutely not tone deaf. Thank you for the advice x

@verysmellyjelly - not crass. Thanks for the suggestion - though she wouldn’t go for it, in the same way she wouldn’t wear a coat! It’s funny, even in the midst of unimaginable events, some things about being a teenager remain constant!

Hello.
Am going to speak frankly so apologies in advance if this is too much. But having been through this recently there’s no point being gentle.
Have you been referred to the palliative team? They are there for quality of life, not just approaching death. If her level of fatigue is beyond that ‘normal’ for oral chemo will tests be done to see is she is anaemic or has anything else going on? If it is the oral chemo causing the fatigue, does she want to be on it? My daughter was on oral chemo and got a nasty rash that caused a week in hospital while they worried about what it was and blasted antibiotics at it. She missed a sports camp she was so excited to attend. She decided that the constant blood tests and the infection protocol was too much and opted out. She had several fab months as a result with no blood tests.
i would recommend the palliative team as helpful outsiders. I also took every tiny hint and maxed it. So a trip to hospital for clinic, nice sunny day- she said ‘nice day for the seaside’ I said ok lets go- drove to brighton, booked a b&b bought knickers and a new t shirt and toothbrush and toothpaste in primark and just did it. I realise this depends on other children and money, but even smaller things like- oh a new pizzeria on high street- I booked a table.
I would get the fatigue looked into- just because she has cancer doesn’t mean she should
be housebound. And if you can find Emily Tannan’s blog/Substack called Bread Love Grief read her piece anout the red bicycle. Will try to link here.
oh and cinema. Did that a lot too.
have you got a blue badge? Helps a lot.
so hard. Big 🤗

Be aware that anything where in virtual reality you're moving a lot or turning can make you feel a bit seasick (because what your eyes are telling your brain you're doing doesn't match what your inner ear is telling your brain you're doing). I'm not saying it's not worth trying as I think some people don't get this problem, but be prepared yourself for it possibly not working that well.

I'm sorry for not having anything more useful to suggest.

I’m so sorry, my best friend also has incurable cancer though not currently terminal. Brain tumour. She is seriously affected by fatigue also, but had some help from a charity with fatigue management. Some days are worse than others and some days she will have to sleep all day. But now most days she can manage one activity and then has a nap in the afternoon. One thing the fatigue specialist said was no matter how bad it is make yourself go outside for a walk even if it’s just round the block.
Might be worth seeing if there is any specialist fatigue management help for her. Hers does sound particularly severe, I really hope you get to do some of the things she wants to do

this is the piece I mentioned. open.substack.com/pub/emilytammam/p/reclaiming-hope-570?r=8zsob&utm_medium=ios

Thank you for this - and for your earlier post: I really appreciate its forthright nature. We haven’t been referred to the palliative team, but I am going to explore that. Her fatigue is not caused by the chemo, but has definitely been exacerbated by it. She is very slightly anaemic (on iron supplements ) but no where near enough to explain the fatigue. I think it’s largely caused by her tumours (it got significantly better after her primary was removed and worsened as the mets grew) but is also complicated by her autism (social interaction tires her), her diet (both ASD-related and chemo related), constipation (tumour-related, exacerbated by the chemo) and lack of exercise/movement. Throw in an unhealthy dose of pathological demand avoidance and a bit of insomnia (ASD related, chemo exacerbated, ‘treated’ with melatonin) and you’ve got what feels like an insurmountable problem. It is by far and away the most debilitating symptom she’s experiencing, and there doesn’t seem to be anything to be done. None of the usual advice, like forcing yourself to walk outside, even just for ten minutes etc helps because just knowing that triggers her PDA and feels like ‘victim-blaming’ to her. It’s heartbreaking - on the odd occasion she opens up/gets upset, she talks about how small her life is (her words) and how lonely she is, but she can’t do anything about it (and I’m completely powerless to help - even gentle encouragement/suggestions feel like pressure to her, and are counterproductive).