Not sure how tall he is but he's so bony he has to sit on a special cushion or his tailbone hurts
Weight loss and stomach cramps. He also had night sweats but he's had those before - we even have a His/Hers duvet (one half thicker for my side of the bed) so that didn't really seem like a symptom and I don't think he ever mentioned that to the doctor. Basically the last time he came home, it took a week to see a GP and she said it was probably acid reflux but she took a stool sample anyway, which after four weeks they finally admitted they lost. In the meantime he went back overseas to work (Russia) and saw a GP there (his work paid for private health). They did tests and had results in about 48 hrs. They wanted to do more tests so they sent him to a major hospital in Korea for a camera down the throat and CT scan, at which point they said oh, by the way, you have gastric cancer and you'll need your stomach removed and chemo. But four days later the biopsies showed it was lymphoma and so he wouldn't need surgery. Two weeks later he flew home and since then he's had a bone marrow test, PET scan, his samples rechecked (in case the Koreans don't know what they're doing although they're probably more with it than the Brits). Apart from being underweight, he spends most of the day asleep or on the sofa. Sometimes he spends an hour thinking about having a shower before he actually gets up to have a shower. Sometimes he just cries. He can't eat much because 'the thing' is taking up most of his stomach. In August he had a medical (for work) and the doc said he was in great condition
Yeesh. Well, if you need someone to talk to, or just a place to vent, you can always come here or send me an email.
Also, I know you already know this, and I know it isn't an easy thing to do, but keep in mind the power of the placebo effect and the difference in outcomes you can get from being positive and keeping your spirits.
Oh squib so sorry to read this. Fuck, but if it's any comfort NHL is what my mother had/has, diagnosed at 60 (it was Stage IV, and indolent at first than transformed to aggressive) and she is healthy and very well at 78... took a while to get remission, she did all the conventional treatments (chemo/radio/stem cell transplant) as well as alternative, meditation, radical diet changes etc
You all must be very worried, I am sending you love, and to your girls and Mr Squib as well, and if you want to talk about it I'm here for you (or on email, jmay100 @ iinet.net.au) you'll be having lots of people giving you information and it can be overwhelming so I'm not going to do that
I've just seen your comment with more details. Thankfully it wasn't gastric cancer and he doesn't have to have stomach removed. It sounds like he is really struggling, he'll be in shock. I don't know if you have done yet but try to resist getting a prognosis. It can be like pointing the bone. Hopefully the chemo will shrink the tumour quickly and he'll be more comfortable. Bad the diagnosis was mis-managed but it's a better outcome than what you thought before. If you're going to have to have cancer, NHL is one of the 'better' ones to have.
What a shitty thing to happen. Venting will be important to you, you will be carrying many emotional loads so let us support you I'm sorry i haven't been around
Thanks, Melbs. I think because I've been caring for people since I had my first girl at the age of 20, I've recently been feeling pretty zapped - the full-on dog who needs to be walked twice a day, the wood stoves (have to carry the wood down 33 steps), the cooking, cleaning etc (and now have to be uber germ-phobic) plus we haven't been on ANY holiday in four and half years plus MrSquib can be pretty fucking critical even when he's ill... and then I feel guilty for feeling sorry for myself ... On the bright side, he had to go in overnight for his first chemo on the 31st and I had a tiny break and he seems weirdly improved after only one treatment. I know things will go downhill once his immune system cracks up but ATM things seem kind of manageable
Back again Maybe the psychology of feeling something is being done has helped him feel better? You have a heavy load, and I didn't realise you had your first at 20, that's young. So you will want to get breaks when you can for sure. Don't feel guilty, let yourself feel sorry for yourself! This IS big! Glad things seem ok at the moment. Thinking of you
Thanks, Melbs. Was having a bit of a meltdown but all ok for now. If and when we get through this, I think I just need to have a week on my own for once in my adult life! Hope all good with you x
Shit Squib that sucks. I'm sorry I've only just seen this because just got back from holidays. Cancer can be overwhelming and if you haven't been referred to a support group for sufferers, I'd be looking for something suitable because there's a lot to work through for both of you while dealing with it. x
I'm sure it has been suggested by your medical people but in case it hasn't, you can buy calorie-dense nutritional drinks that are specially formulated for people who can't eat much or whatever. You can get them from the chemist - being a liquid it might help him keep up his calorie intake. Knew someone who'd had most of his stomach removed because of a rare cancer and he lived on the stuff for twenty years (sounds dull and boring but better than the alternative ;). I'd just be looking to ensure that whatever he does consume is very calorie-dense so that he gets the most possible out of it.
Thanks, Suze - yep, tried various invalid shakes. Trying to get him to drink them was a problem. He seems to be eating more now so I'm not as worried as I was
Alex!!! It’s Melba - going through my password file (yes I’m an idiot I don’t have a PW manager but am ‘looking into it’) and saw link to your blog. I’ve tried emailing you, not for a while I confess. I caught up with squib year before last (???) in Scotland. And I’ve wondered about you a lot over the years. Was it really 2016 that we were all last in touch????? I assume you are alive because you once asked if I wanted to be on an email list in case… you know… but PLEASE let us know you’re ok. I’ve had half a martini and am slightly loose. Anyway sending you love, I’m at the same email address, I’m not hard to find either on la Internette. Xxx
212 comments :
«Oldest ‹Older 201 – 212 of 212Not sure how tall he is but he's so bony he has to sit on a special cushion or his tailbone hurts
Weight loss and stomach cramps. He also had night sweats but he's had those before - we even have a His/Hers duvet (one half thicker for my side of the bed) so that didn't really seem like a symptom and I don't think he ever mentioned that to the doctor. Basically the last time he came home, it took a week to see a GP and she said it was probably acid reflux but she took a stool sample anyway, which after four weeks they finally admitted they lost. In the meantime he went back overseas to work (Russia) and saw a GP there (his work paid for private health). They did tests and had results in about 48 hrs. They wanted to do more tests so they sent him to a major hospital in Korea for a camera down the throat and CT scan, at which point they said oh, by the way, you have gastric cancer and you'll need your stomach removed and chemo. But four days later the biopsies showed it was lymphoma and so he wouldn't need surgery. Two weeks later he flew home and since then he's had a bone marrow test, PET scan, his samples rechecked (in case the Koreans don't know what they're doing although they're probably more with it than the Brits). Apart from being underweight, he spends most of the day asleep or on the sofa. Sometimes he spends an hour thinking about having a shower before he actually gets up to have a shower. Sometimes he just cries. He can't eat much because 'the thing' is taking up most of his stomach. In August he had a medical (for work) and the doc said he was in great condition
Yeesh. Well, if you need someone to talk to, or just a place to vent, you can always come here or send me an email.
Also, I know you already know this, and I know it isn't an easy thing to do, but keep in mind the power of the placebo effect and the difference in outcomes you can get from being positive and keeping your spirits.
Yep, thanks
Oh squib so sorry to read this. Fuck, but if it's any comfort NHL is what my mother had/has, diagnosed at 60 (it was Stage IV, and indolent at first than transformed to aggressive) and she is healthy and very well at 78... took a while to get remission, she did all the conventional treatments (chemo/radio/stem cell transplant) as well as alternative, meditation, radical diet changes etc
You all must be very worried, I am sending you love, and to your girls and Mr Squib as well, and if you want to talk about it I'm here for you (or on email, jmay100 @ iinet.net.au) you'll be having lots of people giving you information and it can be overwhelming so I'm not going to do that
Am so sorry to hear this.
XXX
I've just seen your comment with more details. Thankfully it wasn't gastric cancer and he doesn't have to have stomach removed. It sounds like he is really struggling, he'll be in shock. I don't know if you have done yet but try to resist getting a prognosis. It can be like pointing the bone. Hopefully the chemo will shrink the tumour quickly and he'll be more comfortable. Bad the diagnosis was mis-managed but it's a better outcome than what you thought before. If you're going to have to have cancer, NHL is one of the 'better' ones to have.
What a shitty thing to happen.
Venting will be important to you, you will be carrying many emotional loads so let us support you
I'm sorry i haven't been around
X
Thanks, Melbs. I think because I've been caring for people since I had my first girl at the age of 20, I've recently been feeling pretty zapped - the full-on dog who needs to be walked twice a day, the wood stoves (have to carry the wood down 33 steps), the cooking, cleaning etc (and now have to be uber germ-phobic) plus we haven't been on ANY holiday in four and half years plus MrSquib can be pretty fucking critical even when he's ill... and then I feel guilty for feeling sorry for myself ... On the bright side, he had to go in overnight for his first chemo on the 31st and I had a tiny break and he seems weirdly improved after only one treatment. I know things will go downhill once his immune system cracks up but ATM things seem kind of manageable
Back again
Maybe the psychology of feeling something is being done has helped him feel better? You have a heavy load, and I didn't realise you had your first at 20, that's young. So you will want to get breaks when you can for sure. Don't feel guilty, let yourself feel sorry for yourself! This IS big! Glad things seem ok at the moment.
Thinking of you
Thanks, Melbs. Was having a bit of a meltdown but all ok for now. If and when we get through this, I think I just need to have a week on my own for once in my adult life! Hope all good with you x
You have the ups and downs for sure. All well here thanks. And yes you have to have some time off - even while this is happening if possible! Do it XX
Shit Squib that sucks. I'm sorry I've only just seen this because just got back from holidays. Cancer can be overwhelming and if you haven't been referred to a support group for sufferers, I'd be looking for something suitable because there's a lot to work through for both of you while dealing with it. x
I'm sure it has been suggested by your medical people but in case it hasn't, you can buy calorie-dense nutritional drinks that are specially formulated for people who can't eat much or whatever. You can get them from the chemist - being a liquid it might help him keep up his calorie intake. Knew someone who'd had most of his stomach removed because of a rare cancer and he lived on the stuff for twenty years (sounds dull and boring but better than the alternative ;). I'd just be looking to ensure that whatever he does consume is very calorie-dense so that he gets the most possible out of it.
Thanks, Suze - yep, tried various invalid shakes. Trying to get him to drink them was a problem. He seems to be eating more now so I'm not as worried as I was
Alex!!! It’s Melba - going through my password file (yes I’m an idiot I don’t have a PW manager but am ‘looking into it’) and saw link to your blog. I’ve tried emailing you, not for a while I confess. I caught up with squib year before last (???) in Scotland. And I’ve wondered about you a lot over the years. Was it really 2016 that we were all last in touch????? I assume you are alive because you once asked if I wanted to be on an email list in case… you know… but PLEASE let us know you’re ok. I’ve had half a martini and am slightly loose. Anyway sending you love, I’m at the same email address, I’m not hard to find either on la Internette. Xxx
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