Been given 12 - 18 months!

[Blondie75]

Where do I start!!! I've had the devastating news yesterday that the little shits have all grown. The biggest one has grown 1cm in 3 months. Its in my colon where the biggest one is, numerous mets in my peritoneum and a new spot on my bladder. So basically I've got 12 - 18 months according to my consultant. Life is just so crap some times and I could go on saying "why me" or "it's not fair", but that's just not how I am or feel sorry for myself. Still not giving in and going to keep fighting until the inevitable happens. Lot's of tears, think I'm all cried out for now. Time to make a bucket list and go out with a huge bang. So let's get some ideas together to fill this huge bucket of mine! Or any ideas on how to fight this bugger. I could do chemo yet again, but it's never going to cure me, it'll just keep it at bay and eventually it will stop working. I'm 43 and have 2 young kids who are 13 and 11. Not telling them anything about my terminal prognosis, how the hell do you tell them that! FUCK YOU CANCER

[BeeWild]

Hi sweetie that is just shit!! Not sure of your history or treatments but couldn’t you get a second opinion or look for a trial?

You’re too young to roll over and accept this and yes think we all have that bucket list on here but 1st on my list would be to prove that oncologist wrong!!

Not sure where your treatment is at but try and see someone at the Christie or Marsden if you can x

[Blondie75 in reply to BeeWild]

Thank you for your reply. Here's my history. Had a soft tissue ewing sarcoma 4.5 years ago. Had 3 years in remission. Had surgery to remove the tumour and 11 months of chemo. It's now back with avengence in the same place on my colon but on the outside thos time, numerous mets off in my peritoneum and a new spot on my bladder at my last scan. Surgery not an option as too many in there and did chemo trials for 6 months, finished those in June this year and it kept them stable, but had the worst time ever on it with it nearly killing me off twice. Also tried the natural herb route for the past 3 months and it's done nothing. There is other chemo's they want to try, but it will never cure me just try and keeo the tumours at bay. I asked about surgery again yesterday and taking the larger tumours out. Bit my oncologist saud it wouldn't get rid of all the cancer and I'd still have it. My thoughts are though, if they did surgery and removed as much as they could. I could do chemo after and you never know it could keep me here longer and a better fighting chance of mot to cure me but help me. Also going to try the alkaline diet and go back on high thc cannabis oil

[BeeWild in reply to Blondie75]

Sorry for seeming ignorant but not well up on Ewing’s (I thought it was a bone tumour) and it’s treatment options.

However if you feel you want more treatment and or surgery then you go for it girl!! Monday morning be ringing round for those second opinions!

A lot of us in here have been told they can’t cure our cancer but it can be managed for years hopefully! I’ll take that and the treatment for as long as I feel I have a quality of life. You’re young with a young family so if you’re up for the fight they should be offering you the weapons to do it with xx

Good luck and let us know how you get on xx

[Blondie75 in reply to BeeWild]

It is usually bone cancer, bit it can also be in your soft tissue. It's very rare so I have to be one of those complicated one's lol! My oncologist did say I won't have years, but who are they to say. I could have xx

[bamboo89 in reply to Blondie75]

Cut out all forms of dairy, switch to a whole food plant based diet - its sort of vegan but not, cos vegans still eat all forms of sugar, white flour and white pasta. Whole food plant based calls for wholemeal/brown everything (pasta, bread) and preferably organic, especially when it comes to bread, cereal or pasta - all non organic grain products (cereals, flour) have a percentage of glyphosate (the active ingredient in Round Up weedkiller) in them, which you'll be consuming, and that's best removed from your diet (not to mention your children's diet). Up your intake of green leafy vegetables (make smoothies if you can) and yea, do the thc thing, if you can stand it and still function. Make sure you eat at least two tablespoons of milled flax seeds daily (also called linseeds) as well as nutritional yeast - the beta glucan content in that kills cancer cells. I also eat apricot kernels, but there are warnings about arsenic poisoning in regard to those. I eat about 10/12 a day (limit's six in theory) and have been for months without problems - I figure, since I've got terminal cancer anyway, a bit of possible arsenic poisoning risk is neither here nor there, and its still less risky than chemo..... Also eat berries (strawberries and blueberries particularly have an anti cancer effect, you can use frozen ones in smoothies mixed with green veg). Avoid bottled oils as far as possible, apart from unfiltered olive oil, maybe a little rapeseed oil if necessary, don't cook your food at high temperatures, don't eat processed foods of any sort, cook from scratch with fresh ingredients where possible to avoid preservatives and so on. Oh, and no microwaved food!

As diets go, I'll be honest, it drives me bonkers, eating out is an absolute nightmare and usually not possible. I've lost too much weight on this way of eating and so adopted a slightly flexitarian approach - I have meat no more often than once a month or less, oily fish the same, and absolutely no dairy of any description at any time, but do still eat the occasional egg, maybe every couple of months. Always with lots of veggies or a veggie smoothie to offset them ... eat lots of nuts, especially walnuts and pecans.

It's not just me being off the wall with this diet - a Polish person I know told me there are two cancer hospitals in Cracow, Poland, both good hospitals; one recommends this sort of change in diet, the other doesn't tell patients to change their diets. The recurrence rates in the hospital that does not mention diet are higher and occur much sooner than patients being treated by the hospital that does... I should also say the hospital which recommends this change in diet also recommends removing cosmetic creams containing parabens, and no cleaning products other than vinegar... but I haven't done that... it's bad enough wondering what the devil to eat for dinner, never mind wondering what I'm going to clean the loo with, frankly... good luck!

Miriam

[Blondie75 in reply to bamboo89]

Thank you. Gone on the alkaline diet as from yesterday and going to go back on cannabis oil. Took it all through out chemo last time but not sure if I gave it enough time to work. But all tumours were stable and no new mets back then xx

[jools53 in reply to Blondie75]

Hi Hun , this is the conversation I’m going’ to have with my surgeon! My thoughts are the same , cut the shit out and hit me with more chemo! I’m going to insist on it! Mine has spread like you ! But not been told I’m terminal! And I’ve ask! He said there’s more options still! Get your head in a good place fight them hard and go with your gut feeling! Jesus it so f.....g hard ! I’ve cried but now not sure why I’m feeling so positive! Or am I in denial! Sending big hugs xx where is your treatment being given? 💐💐

[Blondie75 in reply to jools53]

Thanks for your reply. Had a 2nd opinion today. Still the same answers. Going to do chemo again and start in January. Try and hold them back as much as possible. Doing high thc cannabis oil and alkaline diet. Not giving up the fight, never will xx

[jools53 in reply to Blondie75]

Good on you 💪🏿 Ido cannabis but just cbd without thc as I don’t like the highs ! Do you think you benefit more with thc? Let me know your thoughts xx

[Blondie75 in reply to jools53]

You need the thc to kill the cancer and the cbd to stop it spreading. The high is horrible but mainly get it at night as take a higher dose and sleep through it xx

[jools53 in reply to Blondie75]

Ok will bear that in mind! But it doesn’t stop you sleeping? Xx

[Janet235]

I am devastated to read this post of yours...no wonder you are angry, frustrated and going through the why me what can I do so not fair etc stages

Especially hard is your age, young kids and situation

I am surprised docs have 'fixed' a black and white window of possible living... huge amounts can and should be looked at now

It ain't over yet girl not by a long straw. If you focus on this time scale you will go down a narrow spiral

So first get linked with hospital or community MacMillan nurse..they are unbelievably helpful and supportive and will start new pathways for you

Meanwhile just to compare a little with me

Age 71 st 4 OC now 2 1/2 years down the line from diagnosis, 2 grown up kids. No one has ever given me me a terminal window but after recent 5 th line chemo started which failed, I know my body can't take any more

So I asked the direct question now the disease is beginning to grow fast.... how long have I got? Answer vague but could be weeks or months but it will get me as I choose quality of life over quantity.

My first aim is to get to Christmas and have a wonderful family gathering along with my 2 beautiful grandkids age 4 and 6 who will come over from Vancouver for special time.

Second aim is to get to early march when my son and daughter in law have their first baby...

Who knows but main thing I am now at peace with it all and able to plan my funeral etc. It has helped me focus on that nd place I could go to before

I hope this helps let me know...Janet 🌈💓

[BeeWild in reply to Janet235]

Love to you Janet xx

[Blondie75 in reply to Janet235]

It has helped, thank you. They gave me that time frame as I asked the question yesterday. I know they can't reply predict when it's your time, but I wanted to know. They could be wrong and I will fight it all the way yet again and prove them wrong and live longer than that. I hope you're ok and baring up and keep up the fight yourself xx

[CallmeMum]

Hi my lovely,

Bollocks to it! My special person was told she’d live 6 months with chemo she’s still here 3 and a half years later! Earlier in the year before her 3rd reoccurrence I asked her if she had pissed enough people off as she was kinda contemplating no more treatment her answer was no so I said there’s your answer! She’s just had her 4th line treatment xxx

[Blondie75 in reply to CallmeMum]

My words exactly. Got my strong will power and fighting gloves back on and going to give it all I've got. I just wanted to know roughly their thoughts on it in their opinion. Never giving up and going to prove them wrong xx

[CallmeMum in reply to Blondie75]

That’s the best attitude to have prove them wrong! Xx

[LittleSan in reply to Blondie75]

I'm well past my 'sell-by date' and determined to keep going much longer. You show 'em! Xxx

[Blondie75 in reply to LittleSan]

I'm determined to live much longer aswell. Your thoughts exactly, fuck them! Going to prove them wrong xx

[Maus123]

Hi Blondie. Definitely too young to go out yet... even with a bang. How about getting a second opinion on possible surgery with the radical surgeon in London.. C. Fotopoulou?

Hang in there.. you've already managed so much of this hellhole called OC.. surely some more is still possible, even with some reasonable quality of life? Xx. Maus

[Blondie75]

There's too many mets to remove them all, but I am going to ask them to remove what they can. Tooany on.my peritoneum.and it won't stretch back together so to speak. Then chemo to try and kerp it at bay. I can't just do nothing x

[Maus123 in reply to Blondie75]

Fingers crossed for you! Xx. Maus

[Pauline14]

Don’t give up .. have you read Jane Mclelland’s book ... How to starve cancer

Amazing lady we went to one of here talks in London very interesting

[Lindaura]

We have all been told we can never be cured, but we can fight to keep it at bay!

I was riddled with cancer when I started this, but responded well to chemo.

Then the surgeon cut out everything he could and blasted over 200 spots in my bowels with an instrument called the Plasmajet. I know they have this at the Christie, although my op was at the RUH in Bath.

Here is a link about that:

google.co.uk/url?q=http://w...

Get yourself a second opinion and find a trial that will keep your disease at bay.

Wishing you all the luck in the world!!!!💕❤️💕

Laura

[Blondie75 in reply to Lindaura]

Thank you for this. Just had a quick look, it says it's for ovarian cancer which I don't have xx

[Lindaura in reply to Blondie75]

But I wonder why only Ivaruan cancer?

Anyway, get that second opinion!

X

[Blondie75 in reply to Lindaura]

It will be worth me calling the Christie. Is that the one in Manchester? Xx

[Lou53 in reply to Blondie75]

Yes the Christie is in Manchester. Just seen your post and want to encourage you, like others, to get a second opinion...

Keep fighting!

Louise

[Blondie75 in reply to Lou53]

I've just called the Christie. I need to be refered there by either my gp or hospital I'm currently under to even be seen by the Christie. Why is it so difficult! I'll be on the phone tomortow to my gp and oncologist to get this done as it's some hope for me xx

[Aotters]

Sorry to hear your news. I too was told by my specialist that if I was lucky I’d live 18 months that I would not have surgery

I did my research and found that the stats he had given me were printed 10 years ago, also that it takes 5 years for stats to be printed so all in the stats he gave me were in fact 15 years old

I asked to see another specialist and so glad I did

I’m recovering from surgery and have

been told that the have got rid of all the cancer. I go for my first post op check up in 3 months.

I hope that all goes well for you and wish you success in getting bettet

[Caroles1]

Hi love, seriously, do not roll over and give in, you are not a statistic! If it were me I would have as much surgically removed as possible, to knock the blighters back and the best chemo or trial you can.

Get a second opinion, with all due respect anyone who gives you a timescale isn’t anyone I want to deal with. I’m sure the other ladies have recommendations for someone who has a more positive attitude.

You have everything to fight for,

Lots of love,

Carolexxx

[Blondie75]

Thank you. I'm going to give the Christie a call to get a 2nd opinion as they specialise in the canxer I have xx

[BeeWild in reply to Blondie75]

Hi lovely I can highly recommend Prof Jayson at the Christie he’s my oncologist and he and his team are amazingly positive he doesn’t give up on people easily . He also runs lots of trials for us ladies too and he is highly respected throughout Europe and U.K.

let us know how you get on xx

[jools53 in reply to Blondie75]

Go with your gut feeling! There’s always something round the corner! If you need any help financially let us know! We’re all in this together! Kick it’s arse girl! Your not going anywhere yet big f.....g hug 😘😘😘😘

[Blondie75 in reply to jools53]

Thank you. I'm definitely not checking out yet and keep fighting on. Currently waiting to see my gp to get a referal to the Christie in Manchester on a 2nd opinion about surgery and see if it's possible xx

[Blondie75]

Thank you. I'm going to call the Christie hospital today. I looked at their website last night and they specialise in the cancer I have which is in my colon, peritoneum and now a spot on my bladder. Worth a shot and hopefully see what they can do xx

[Di16]

I've asked twice how long I might live, & was told they didn't know. I've also known times when people have been given a time scale & lived for longer. One lady with lung cancer was told she had about a year well a

[Di16]

Accidentally pressed post before ending post. I know a lady with lung cancer who was told she had about a year to live well over a year ago. Personally I was told in April 2013 there would be no more surgery. Last year, another surgeon agreed to operate, so sometimes a 2nd opinion can make a difference. I'm sorry you find yourself in this situation so young with young children, & hope that with treatment you do have longer than they say.

[Blondie75 in reply to Di16]

Thank you. They gave me this time scale as I asked them. I know they're not god and can tell you for sure. A 2nd opinion is what I'm going for and get the ball roling with the Christie hospital. Never giving up hope and keep on fighting xx

[Colman]

Keep on fighting 💛💚❤

Claire

[Blondie75]

Thank you. Definitely keep on fighing xx

[Lizchips]

Tell, your doc you want to try intraperitinel chemotherapy, IP, it's supposed to add 18 mo of being cancer free ,my doc says results she's seen more than 3 yrs. The best❤❤❤Liz

[Blondie75 in reply to Lizchips]

Thank you. Not heard of that. What is it? Xx

[tutti]

I am still here 18 years after stage 4 diagnosis but I have had five recurrences five major surgeries, two lots of chemo,radiotherapy and some bizarre trial laser treatment up my bum for a rectal tumour. I refused chemo after2004 and have only had surgery since losing my bowel,bladder half diaphragm bit of liver as well as initial debunking of gynae bits. My main day to day problems are more from arthritis than cancer.

I would certainly try and find a surgeon who would be prepared to have a go.I have been lucky that from day one of diagnosis Ihave had the same surgeon who has always persuaded me to give it a go.

Vivx

[Blondie75]

Thank you. I'm going to go through my gp to get a referal for the Christie hospital in Manchester. See if they will do surgery. I know they can't remove all of them as too many mets on my peritoneum to cut out, but I want them to try and cut out as much as they can, the biggest one on my colon for a start. Also they have a plasmajet they could use to blast them away. Worth a try. You're a true warrior, keep on fighting xx

[Maggiemo19]

Have they tried you with caelyx chemo at all? You keep fighting gal 😘😘😘

[Blondie75]

No, not heard of that one. Have you had it? Definitely keep on fighting. I can't give up for the sake of my beautiful children xx

[Lymetree]

Hi Blondie75, What can I say, this is just so difficult for you. You could give Padma Basic a go? Its a Tibetan multi herbal remedy which boosts the immune system and thus helps the body to eliminate cancer and is used by the physician to the Dali Lama. Its available online. I started taking it with no I'll. effects but then had to stop when chemo started. When I get through all my chemo, op, chemo process I plan to start taking it again. There is an interesting story about the remedy and a lady called Saranne who has been cancer free after 16 years, which she believes was because of the remedy? I read about it in the New York Times best seller - Radical Remissions by Kelly A. Turner. Suranne had had 3 ops, radiotherapy and multiple chemos by the time she got to meet the Dali Lama's physician but obviously in her case it worked, she has never looked back and is still cancer free. Maybe it's a one off but I think not. It's what I plan to do. The book is inspiring anyway.

Lots of Love - Maureen - XXX

[Blondie75]

Thank you. I'll look into it xx