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Post by suze on Sept 13, 2010 15:39:06 GMT
Oh gawd, Lisa ---- I was pleased to see you'd joined my site, but very sorry to see your story and that you have serious mets ... our stories have been so similar and I wish it was different for both of us ..tho my lungs cleared up after the last lot of chemo, so it CAN happen ... did your urethra dilation work? I must admit I feel lucky that my radiation didn't seem to cause any side issues of that magnitude dunno if you noticed but I retired recently and start my pension soon ... is that an option for you? it's hard to believe when bosses are horrible to ppl with cancer ... luckily mine were ok and the pension was awarded without any hassle really ... well apart from the hassle of having to acknoweldge that ppl don't generally get better from where we are ....
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Post by loopy369 on Sept 13, 2010 20:51:54 GMT
Hi Suze, well I was expecting the cause of the pain to be a tumour after friends have had spinal and brain mets too. Managed to surprise everyone with the scan results. The dilatation didn't work - I was supposed to see urologist in July, got moved to September but had to cancel that one as boss off that day - now have an onco appointment that day instead and am off sick so he can't stop me - see urologist in October. My current job has no pension, no nothing, just a flat net figure each week worked UP to the gross so regardless of what happens to tax and NI I get the same amount - nice! I have contributed to pensions in the past but they're just sitting there. I'm not sure I can access them at 39? Seeing Welfare benefits advisor soon so will get more advice there. Have put sorting out my pensions on my list for next week (less visitors planned). I went to work for my boss because his father was declining in health (prostate cancer) and his mum couldn't do the accounts any more as she needed to be home all the time and couldn't cover for my boss either (obviously). I couldn't manage going up to 5 days and a 70 mile round trip for work again whilst still recovering so took this job at 4 days a week and 5 miles from home. Big mistake! You think you know someone? You do when you work for them! I won't get Avastin now - no private insurance any more, but usually put turmeric in my curries - I just add it in other stuff now too ) Did a local radio interview on the recent NICE rejection and a local radio & TV appearance on local news earlier this year - at which point I was a "success story". The NICE/Avastin one was less jolly but I refused to be negative - I'm not sure if they were expecting me to break down in tears or what, but I always did struggle to conform
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Post by suze on Sept 13, 2010 22:22:48 GMT
Dunno about private pensions ... I expect there is a lot of variation but the teachers' pension pays out on very strict conditions for ill-health, which we qualify for ... worth finding out ..
now my teachers pension has agreed to pay out then the private one I bought will pay out too . but that's not worth much ..
the teacher's one I paid into for neearly 20 years, and they also enhanced it cos of my condition ... so it's not bad ... tho I reckon it is a good job my wife still earns a lot, to sustain my extravagant life-style
being single makes it so much harder for you ...
one of the things you must do it get more benefits, woman in the next room to me at hospital was claiming disablitity allowance and geting a mobility car .. she says you need to emphasise your worst days on chemo and no doubt she had help from a cancer charity to fill in the fomrs ..
when I'm back in chemo I'll claim that .. if this bastard govt haven't scrapped it to save a few bob ...
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jan
Junior Member
Posts: 82
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Post by jan on Sept 15, 2010 9:18:00 GMT
Oh Lisa,
What words can I find for this.
what an arse all round, diagnosis, work and your social situation...but you still have spirit..saying you refuse to be negative..jolly hard tho'.
I think Suze's situation may give you cheer, as she says her lung mets cleared, as may yours.
in this situation you can only take a small step at a time otherwise it is just too overwhelming.
good you are concentrating on the diet issues, I should get more proactive with that.
keep talking to us!
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Post by loopy369 on Sept 15, 2010 18:34:44 GMT
Hello Jan Benefits are all in hand - Suze you don't have to be in treatment for DLA, just to have lung and liver mets (think it's the lung specifically actually as those are the doom and gloom - incurable ones in "their" eyes). I'm getting a blue badge again which I can use when I need to - the assumption being all (terminally diagnosed) cancer patients have days when they are too tired. They just changed rules for cancer patients so no photos needed now - last 12 months instead of 3 years. I don't think I'll be accepting chemo for a while yet, I have some things planned for up to early December that I'm not missing out on so I'm hoping they'll be happy with 3 month scans until I'm ready to go down that route (budget obviously will affect that, not my wishes)! I'll let you know how Friday goes ) Meantime I have some clothes to take in after my unintentional 3 stone weight loss.
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jan
Junior Member
Posts: 82
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Post by jan on Sept 15, 2010 18:42:16 GMT
Lisa, you know me better as Solange on IA.
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jan
Junior Member
Posts: 82
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Post by jan on Sept 15, 2010 18:49:52 GMT
Could one of you following this diet give a typical days diet outline, or indeed what you have eaten today.
If possible.
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Post by suze on Sept 15, 2010 19:08:38 GMT
Jan, you've seen my diet plan, though I dont stick to it religiously, I have posted it as an attachement somewhere ... will try to find it again
what I DO ensure every day is to: eat curry/dahl with extra turmeric and black pepper, or a turemric tablet if not ... drink three cups of green tea, ideally Japanese sencha eat berries eat something from cabbage family sprinkle linseed on breakfast to increae omega three use linseed oil for salad dressing
breakfast: natural organic or soya yogurt and berries and other fruits lunch veg soup or dahl tea - vegetarian dish, curry if I haven't had curry at lunch --- occasional oily fish
snacks - bananas/brazil nuts/apricots/ other fruit
NO sugar, no white wheat bread or pasta, no alcohol, no red meat maybe chicken once a week and fish two or three times ..
easy really!
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jan
Junior Member
Posts: 82
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Post by jan on Sept 15, 2010 19:12:44 GMT
I did try to find it..honest.
give me a good dhal recipe that I can digest.
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jan
Junior Member
Posts: 82
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Post by jan on Sept 15, 2010 19:16:47 GMT
Gawd, I've found the download..oops.
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Post by suze on Sept 15, 2010 19:19:00 GMT
erm, for sure this diet is not very stoma friendly
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Post by suze on Sept 15, 2010 19:26:21 GMT
maybe I ought to apply for that DLA ... but just now I dont feel at all seriously ill ....
hmmm
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Post by suze on Sept 15, 2010 19:27:39 GMT
do you have link to lisa's blog, she is doing something slightly more extreme ... but again she doesn't have a stoma
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Post by loopy369 on Sept 17, 2010 18:10:08 GMT
Hi Jan (Suze filled me in on your alias - won't help me remember much tho :S)
Today I had:
Porridge
oats (from large bag of ordinary oats, not ready brek or anything over produced, just plain simple oats 59p for a huge bag) soya milk (organic unsweetened, min 6% soya) half teaspoon of cinnamon, sprinkle of dessicated coconut, plus a few blueberries thrown in the pan at the end.
M&S edamame bean salad
Banana
(was out all day last two days, hospital visits/nurses/saw daughter so treated myself to 2 for £3 vegan salads)
Green drink
1 cucumber, handful of chopped kale, stick of celery, green apple - all juiced, then blended with a freshly chopped mango.
Green lentil & spinach hotpot with pan toasted dulce (sea veg bought dried online as with the cocunut oil I cook with and other "odd things")
Made last night, left one spare bowl in fridge and froze 4 more portions for when I'm miserable/lazy/tired etc. (Green lentils, sweet potatoes, large leek, 3 med red onions, 3 med carrots, 2.5cm square freshly grated ginger, 4 cloves minced garlic, tbspn turmeric, lots of fresh ground black pepper (thanks Suze), tbspn ground cumin, 1/2 litre stock made with organic veg stock cube - sometimes use water from when I've steamed veggies instead and a splash of soy sauce.
Got some blueberries, walnuts, macadamia nuts, pine nuts, pumpkin and sunflower seeds, almonds, sultanas, goji berries, and green fruits for snacks. Never really feel hungry now though so try to eat by the clock.
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Post by xgirlpilot on Oct 13, 2010 13:43:57 GMT
Spring of '09 went to my doc because of rectal bleeding. She patted me on the head and sent me home with the diagnosis of hemorrhoids. Feb '10 went back, worse rectal bleeding - same diagnosis, same pat on the head. I was relieved, because my husband and I were about to leave for a 3 month trip-of-a-lifetime to Africa and Italy... Halfway through Italy it became obvious something was seriously wrong with me. Bleeding with every bowel movement, sometimes just blood... The Iceland volcano blew about the same time, so no way to get home early. The holiday was now a waiting game... Back home and saw my doc immediately - beginning of May. Unbelievably (in hindsight) she still couldn't see past hemorrhoids. Unfortunately, fate threw in a red herring in the guise of an extremely enlarged uterus. I'm sure she thought I had uterine cancer, but when the ultrasound came back as fibroids, she relaxed - and completely forgot about the rectal bleeding. She reluctantly arranged an appointment with a gyne and a surgeon for a colonoscopy. The gyne appt wasn't for 3 months, and the surgeon never did call, so don't know what was in the cover letter... My husband took me to emergency dept at the end of June. THEY listened! 3 weeks later I had my diagnosis - rectal cancer. 2 weeks later, a CT scan showed a highly suspicious spot on my liver - diagnosis: stage 4 rectal cancer. Lived with that diagnosis for 2 weeks, until the follow-up MRI showed that it was a benign hemangioma. My rectal cancer looked quite simple after that. It looks like there's one enlarged lymph node, won't know if I'm stage 2 or 3 until surgery. Got a new GP. Started on Capecitabine chemo pills - 2 weeks on, 1 week off. Then to the city for 5 weeks of radiation and 5 weeks of a reduced chemo dose. Peeling feet, no fingerprints, inflamed urethra, and all the other fun... I'll have rectal surgery in December, with a complete hysterectomy (and high hopes of dodging the colostomy bag). Then 4 months of chemo - will be finished (and "cured") by the time I turn 50. The Anti Cancer book by David Servan-Schreiber is my bible. It's given me hope that one day I'll dance at my grandson's wedding... My husband is a rock, I'm so blessed to have him in my life... he's supporting and participating in all the lifestyle changes I've made, including giving up meat (well, mostly!)
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