Menopause Matters Forum
Menopause Discussion => Other Health Discussion => Topic started by: GeordieGirl on May 25, 2015, 08:47:42 PM
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First treatment tomorrow for this darned colon cancer. I'm crossing my fingers and toes I'll be suitable for this 'new' radiotherapy option (or brachyotherapy) even though it means having something akin to a gate post shoved where the sun don't shine for up to 12 sessions. O.u.c.h.....and that's just the indignity of it all.
I've finally bitten the bullet and told my girls, I'd been dreading it. In the end I just told it how it was and they've been fairly pragmatic - I just kept emphasising how lucky I was that it was caught when it was, and for having a terrier of a Bum Doc who wouldn't give up when the biopsies didn't give him the results he suspected. It's not great, but could have been so so much worse.
I'll have tests to begin with just to make sure all is where it should be ready for treatment, no doubt another enema (whooooooosh!) and then the gatepost indignity. Apparently it only lasts less than a minute once it's up there, I suspect getting it there will be another thing.
Update tomorrow through my blushes.
GG X
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not the nicest thing to have done, but hey we girls are made strong. we have to be. my thoughts with you, relax as much as you can the more relaxed you are im sure it will be easier.. easy said than done i know... all the best xxxxxxxxxxxxxxxxxx
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Good luck Geordie Girl!💕
You WILL beat this and kick ass !
Will be thinking of you, you tough cookie
Much love and best wishes
Annie xx
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All the best GG for tomorrow. Just forget the indignity and think of the positive outcome. The first time will be the worst. Keep strong.
Bramble
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Best wishes for tomorrow! Let us know how you get on.
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All the best for tomorrow lovely, hope it's not too uncomfortable for you xxx
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Fingers crossed for you tomorrow, hope it's not too horrid.
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GG, youll be just fine, got the right frame of mind, loads of support and a doc who believes he can help you.
Hey after pregnancies, birth and then meno, if you have still got any dignity left after that little lot then good on you.
All the best
linsey
X
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Leave your dignity at the door and pick it up on the way out.
I will be thinking of you and sending positive thoughts your way.
Let us know.
:bighug:
Honeybun
X
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Hey after pregnancies, birth and then meno, if you have still got any dignity left after that little lot then good on you.
All the best
linsey
X
Whatever dignity I had left melted away during the first consultation whilst my Bum Doc was chatting away merrily...with his fingers up my backside. It's rare that I struggle for words but, call me old fashioned, conversation fails me when someone isn't looking into my eyes. ;) Let's hope the next lot of consultants leave their small talk for after the 'gatepost' therapy rather than during.
Thanks for the warm wishes everyone,
GG x
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Good luck Geordiegirl,
Your positive attitude will reap rewards I'm sure. In my thoughts and prayers.
Xxxxxxxxxxxx
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Thinking of you, stay strong.
xxxxxxxxx
Thorntrees
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I so admire your attitude GeordieGirl - that will see you through I'm sure.
All the very, very best.
Jenna xxxx
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Good luck from me too
Taz x :foryou:
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Thinking of you today - good luck :hug: :hug: :hug:
Katy x
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I so wish you luck. As a major health anxiety sufferer I am in awe of your positive mental attitude. Even if it is just for the benefit of others it shows you are a very brave lady.
xx
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Best of luck - know what you mean - something about the rear end that leaves us more embarrassed - no idea why that should be really - having just exposed my rear to a theatre of 7 people a few weeks ago ... thankfully staff are always matter of fact which helps a lot. Your attitude is brilliant, wishing you the best outcome
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Good luck form me too, the worst bit will be thinking about it,keep us posted on how it was, what were your first signs of problems?
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Hope it's all gone ok today, let us know how you got on.
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Good luck, sending cyber hugs xxx
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Remember - the Staff will not see a better posterior this year ;)
What side effects have you been warned about?
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Tons of hugs and best wishes
:hug: :hug: :hug:
xxxxxxxxxxxxxxxx
Post here when you can - somebody will be around :-*
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More well wishes from me - hope all goes well, swiftly and with lots of positive edge, despite the procedure, situation etc :)
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Good Luck will be thinking about you ;) HUGE HUGS!!!!!! xxxxxx
Liz xxx
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Thinking of you :foryou:
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Been thinking of you today GG
Hope it went ok
Annie xx
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hope today wasn't too awful. thinking of you. All the very best. x
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Hopefully all went well and GG will post soon to let us know.
We have all been thinking of you.
Honeybun
X
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All the very best. :foryou:
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Wishing you the best & hope things were OK today. :foryou:
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Hope it went well for you GeordieGirl and thinking of you.
Hurdity xx
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Just caught up with the Post. Hope everything went well for you. Sending you a :bighug:
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Ive also only just read this and hope everything went well today :foryou:
Ariadne xx
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Thinking of you and hoping all is well :hug: (http://:hug:)
PN x x
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I do hope GG is ok.
Honeybun
X
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Me too, hopefully she'll be along soon.....
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Recovering from the 1st session maybe.
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Biggest hugs.to you xx
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Hope the treatment went well! Sending hugs.
Taz x :bighug:
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Hope everything is going OK.
:hug: :hug: :hug:
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Hi all,
Thanks for all the warm wishes :) I meant to post back but I've been really busy workwise, unfortunately working for myself does mean little rest, particularly as my number 2 is on holiday. Anyway...
First treatment went well on Tuesda and I've signed away the rights to the photos - my consultant is hoping to use me as a case study. Not quite cover girl shots (they're of my insides) but as close as I'll get. And no, not Facebook material either though I have to admit I was rather impressed by them. :)
I've Top Dog on my case, the world's leading authority in a treatment method not currently licensed by NICE as mainstream in the UK, but despite being thought of as 'pioneering' here, has been used in France for 40 years. It's very reassuring to be in the hands of a master, even if he does come equipped with something they call the "Bum Gun" (and it's enough to make your eyes water). The consultant (Prof Sun Myint) could have retired years ago but he's actually on a mission to get this treatment accepted as a key approach for bowel cancer, it not only saves a lot of surgery and indeed cost, but has saved a lot of arses too.
A number of things have been pointed out to me that my consultant at Stockport hospital missed or misunderstood, all the more reason I'm glad I stood my ground and insisted on the referral. The next treatment is a week on Tuesday, hopefully in the interim the pesky cancer tumour cells should hopefully be shriveling up. Top Dog did mention that they usually supplement this with chemo radiation - a definite no-no for me. While I'll (reluctantly) agree to external radiation if needed to blast a nearby lymph node, chemo is definitely the other side of my line, I believe in building my immune system to fight this and not blast it to smithereens alongside the cancer in the hope that only the good and not the bad cells return >:( Instead I'm following a very 'pure' diet, cutting out toxins in food and general living. Fortunately (off the record) Top Dog agrees with me on this, quite refreshing for a conventional medic.
All in all not a bad start and Clatterbridge is a real testament to the NHS. x
GG x
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To answer the question on symptoms..... I was passing a little blood mainly after drinking alcohol. Because it's not wrapped up with the poo (sorry but you did ask!!), but separate, it was suspected to be either IBS or piles related. It still may be as it hasn't happened since I cut alcohol out. It's only been by chance that they found a polyp during a colonoscopy. I really count myself as lucky that they've found something, if it hadn't been for the occasional drunken binge it may have lurked there for a lot longer undetected. The tumour is stage 2 so I've an 80% chance of being cancer free for 2 years + following the current treatment, if they use external radiotherapy this will increase to 90%. I'll be monitored closely for the next 3-5 years and if it were to come back (or not clear) there would be options of surgery.
My Meno doctor pointed out that oestrogen protects against colon cancer (I'd also read this elsewhere), I'm no using BHRT so am hoping that affords a little protection against this lump having any 'friends' :)
Anyway, the lesson for today ladies is - if you've any blood, discomfort or reasons to think all is not well down there, get it looked at as soon as you can.
GG x
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I so wish you luck. As a major health anxiety sufferer I am in awe of your positive mental attitude. Even if it is just for the benefit of others it shows you are a very brave lady.
xx
Thanks Rebel. A friend said I was being amazingly positive, my response is "what's the alternative?" I'm a huge believer in positive mental attitude and it's the only thing that's kept me sane at times. If I'm perfectly honest too I'm actually finding this whole 'journey' quite intriguing, it's given me a big insight into the NHS, I've met some lovely people and am feeling very flattered to be one of Prof Myint's (bum) cover girls :)
I also think the timing was (if it ever can be such?) 'perfect' for me. Having spent months reading up about hormones and realising how little my GPs knew about this, this gave me the realisation that all medics aren't experts and it's ok to challenge them. IF I hadn't done so with my local consultant I'd have had a huge op and would be in a different place now. Instead I've now got a leading consultant who I feel I can trust, and I've also worked my way through my GP's surgery to find a doctor who's happy to be challenged but will work with me rather than just prescribing boxes.
It probably sounds potty to say I think everything happens for a reason but I've a feeling this whole chapter is leading me somewhere. No, not a box 6 feet under - tut tut- but on a track that will somehow tie in with my work. Not entirely sure in what guise yet but I'm sure the eureka moment will come to me.
I do hope you can somehow manage your major anxiety, I can understand how debilitating it can be.
GG x
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So glad to hear you are being positive and sounds like you are in very good hands . Also its great to hear that you seem to have control over your treatment,well some imput which is being listened to. :foryou:
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Such a good job you did your research and I'm pleased to hear that your first treatment went well - it all sounds extremely encouraging.
Wishing you all the very best. Jenna xxxx
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So pleased to hear it all went well. Sounds as if you are in the very best of hands. Refreshing to hear that you are being listened too.
:foryou:
Honeybun
X
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Good to hear from you and that you feel as confident and positive as you do, that the relationships with the medics and treatment plan are also all inline. I don't think you are potty to think in terms of everything having a reason. Everything is a learning that leads to the next and the next and the next thing, until it doesn't anymore, which I think might be quite boring. Wishing you more wellness.
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You are excellent at your research !
I'm so glad things are going your way
I'm too a believer that things challenge us for reasons although why can't they be little tiny challenges ?
I feel you'll be fine
Annie xx
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So so pleased for you
:foryou:
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Gosh, you are amazing. To think of answering individuals on this thread is wonderful. You have totally inspired me to be more positive. I am also altering my diet - have given up caffeine, alcohol, sugar [where possible] and have always cooked everything from scratch. I have also started yoga and pilates and am thinking of zumba.
If you can stay positive, I can. :) THANKS and good luck.
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I think positive attitude is a factor of mind rather than circumstances Rebel - it's easy to find a lot of stuff to whinge about, it's just as easy to find lots and lots of nice things to be grateful for too :) A bit of 'training' and I'm sure you'll get there!
Best of luck with the healthy eating and exercise plan.
GG x
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So good to hear from you GeordieGirl and that you are feeling well, upbeat and positive - you are an inspiration! Also thanks for reminding us to go to the docs - I really must make that appt....
I hope it all works well - but I'm flabbergasted that you are able to work right in the middle of this?! Shouldn't you be resting?
Hurdity xx
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So good to hear from you GeordieGirl and that you are feeling well, upbeat and positive - you are an inspiration! Also thanks for reminding us to go to the docs - I really must make that appt....
I hope it all works well - but I'm flabbergasted that you are able to work right in the middle of this?! Shouldn't you be resting?
Hurdity xx
Resting? Aha, the advantage of working for myself is I can work as long as I like for as little as I like but rest doesn't come into it :) Not such a bad thing as it's a distraction. That said, I feel great. This treatment isn't like chemo or standard radiation that pretty much knocks you for six, it's so less invasive. Despite having a bloody big pole up my @rse I could even sit down afterwards and even went dancing on Tuesday evening :) I must admit though I'm making the most of my partner's sympathy, he's been sorting out meals a lot more and looking after me - it would be positively rude of me not to make the most of it ;D
As for that appointment - DO IT DO IT DO IT DO IT !!! It may be something and nothing, it may not, but the earlier you investigate the better. And if nothing else, it's a day out with some (often) dishy consultants. ;)
GG x
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What a positive Lady you are and such an inspiration to all of us. Most people would be knocked for six after treatment but I think that a positive certainly helps. :foryou:
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"It probably sounds potty to say .. " may I giggle?
As for chemo, it is used to shrink some tumours. Radiation can be very painful in certain places as it does burn - my breast looked like it had sat in the sun all on it's own ::) - I was given a steroid cream to apply.
I was tired during the 4 weeks of daily round trips of 30 miles so made sure that I went into work most days. The treatment session took 4 mins., it took longer to remove clothing and get dressed again ::). I didn't feel ill whilst under-going treatment; emotionally upset but not physically which is why I stopped the Tamoxifen after 4 weeks. [long story short]
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Hello GeordieGirl.
I've just caught up with this thread and loving your attitude. I wish you continued success with your treatment and recovery.
Take care.
K.
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Love your attitude - really need to take a leaf out of your book!
Have you always been positive or has it taken some brain training?
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Love your attitude - really need to take a leaf out of your book!
Have you always been positive or has it taken some brain training?
I've always been annoying positive I'm afraid :) My mum used to say that no matter how bad you think things are, there's someone who's in a worse position....very true, and we need to count our blessings rather than look for the clouds. I must admit though I'm even surprising myself on this one, and even when I've had the odd bout of insomnia it was worrying about work and not the cancer!
On the plus side:
1. My tumour's been caught early, and pretty much by chance - it's in a very difficult place to spot so could have easily been overlooked. I've a lot to thank my local hospital for.
2. This whole thing has really forced me to look at my diet and general lifestyle and we've been making some huge changes for the better. I'm not quite sure how I got this far without doing it earlier to be honest, and I feel - and look - so much better for it.
3. I'm getting my money's worth out of the NHS ;) And I've met some lovely, lovely people along the way.
I believe positive mental attitude goes a long way to beating these things - most things in fact- and I'm quite determined to still be around in my 80s so I get my own back on my kids ;)
I'm back at Clatterbridge on Tuesday and hopefully the tumour will have responded as it should do. My consultant knows I'm not going down the chemo route but may be pushing external radiation depending on the results....I'm not entirely convinced about this either but am trying to keep an open mind until we've discussed it in more depth. Let's see what comes.
GG x
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Love your attitude - really need to take a leaf out of your book!
Have you always been positive or has it taken some brain training?
Just thinking more on this. the only time when my positive attitude was knocked was last summer when an employee nearly bankrupt my business and I had months of extreme stress. I kept my sanity with long walks, but also tuning into some very inspirational people on YouTube. I personally love Jack Canfield, he's like everyone's favourite grandfather but so wise, but in essence there are a lot of motivational speakers and there's bound to be something that hits a chord. A 15 minute with Jack on a morning was enough to fire me up for the day, and I still occasionally tune in if I'm peed of with work etc. Well recommended.
GG x
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Hope it goes well at Clatterbridge on Tuesday
:hug: :hug: :hug:
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Thanks Limpy.
The good news - my consultant was overjoyed at how the tumour has responded to treatment. He insisted on putting the photos on screen to show everyone and made me take photos of them with my phone. He asked three times if I'd been meditating - I haven't but I have been following a nutritional protocol known to have benefits. It looks like he'll be able to decrease the number of sessions needed to blast the tumour to oblivion. So not just good news, but the dogs b''cks :)
Unfortunately where I feel decidedly uncomfortable is the preventative treatment the Prof wants to undertake. Although at our last meeting I explained very clearly why I would not take chemo (and the Prof was happy with that), we also discussed external radiotherapy and I expressed my concerns at that too. Yesterday however as soon as I got there I found myself on a conveyor belt to measure up for the external radiation. I had a real strop about it and ended up going back and forth between departments to explain. My instinct was (and is) screaming no on this, and I really didn't appreciate being pushed along on something without prior warning. Under pressure I did end up having the CT scan with tattoos where the entry points would be, I now have two weeks before the treatment is due to start though so I've a few weeks to investigate, research, read, read, and discuss further to make my mind up on this. (Perhaps meditation will work on this? ;) ) The external radiation isn't for the tumour, but is preventative - Prof wants to remove a nearby lymph node that's not cancerous but has a percentage chance of becoming so.
I feel distinctly uncomfortable at ignoring my instinct (it's by following it that I've got onto the tumour blasting treatment), and it's also the first time I've felt the appointment hasn't been patient-centric but simply doing what they always do.
A friend is highly involved in a cancer charity and mentioned how statistics can be misleading as they cover so many different cases, including a wide number of people who simply go back to all the bad habits straight after treatment, without eliminating factors that have a hand in the disease. I've found that reassuring (we have made huge changes around here), but I'm still unsure whether I have the courage of my convinctions on this. I know if the lymph gland does become cancerous I won't be able to avoid surgery, however I have to weigh up the chances of that happening with the side effects of the radiation. I feel it's a little like Russian roulette at the moment....
Anyway, in tumour-busting celebration I allowed myself a night off the nutritional plan last night and we went out for a fab Italian meal and a little too much red wine. This morning my sore head reminded me why I can't do that too often - ouch !
GG x
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It's a difficult dilemma - if only we had crystal balls :)
I faced an agonising decision prior to my op - my instinct said NO leave well alone but the surgeons thought otherwise - every MRI indicated ovarian cancer and even though they didn't quite agree with that, they didn't know what it was. After 3 years of deliberation I went ahead - the rest is history - it went wrong and I ended up with perforation on my bowel. But the surgeons also said that even though they didn't find cancer, they found a mess which could have strangulated or killed me had I required emergency surgery. It's so hard to know what to do but what little I know of you, I'm sure you will make an informed decision which will be the correct one.
( can you share your diet with us - I need a diet that maximises healing ).
Good news on your progress so far though X
:foryou:
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YIIIPPPPEEEEEEEEEEE
Regarding the tumour size.
Don't envy your decision about the radiotherapy, but I know nothing about it.
Idle brain dump type thoughts -
- How long would it go on for?
- What could the side effects be?
- %age chance of side effects?
- If you didn't have it, what would happen?
- If your Consultants wife,mother,girlfriend had got what you have, what would he want for her?
- Have you got your consultant's phone no. to chat?
Sorry, I know it's just ramblings, but I always feel better when I know the numbers.
I know your instinct says no, but several years ago OH persuaded me to go to Poland for a new type of treatment for MS. It was so so against my instincts, oh and that of all of the UK MS consultants I'd had dealings with. Long story short, I went and it helped massively (well it did after a 2nd go) I was glad I did it in the end, even though I was @hit scared.
Lots of hugs
:hug: :hug: :hug:
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Just wanted to wish you well GG xx
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Great to read your news - can't be easy deciding on whether to have certain treatments, wishing you well with the decision.
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Great news that your tumour responded well but sorry to hear about the other issues re radiation. I've never had to face anything like this nor with close relatives, but do hope you manage to sort out what's right for you that you feel comfortable with. Your positive attitude will go a long way :)
Sending hugs
Hurdity x
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So glad you have had really positive results :cancan:
And that you indulged yourself with a lovely meal. :)
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Good news on the Tumour and really hope that you can sort the right treatment out for you. :foryou:
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I had 5 or 7 lymph glands removed from the affected arm-pit, all clear, following which I had pre-cautionary radiation treatment with no ill effects. The Surgeon and Oncologist advised this, as I had undergone 2 lots of surgery and it was to 'zap' any cells moving around. The affected breast looked like it had been out in the sun for too long ;D
I had a few seconds treatment daily for 4 weeks, not including weekends. It took longer to undress/dress than the treatment session ::). How long would your 'zaps' be for and what's the problem if they get rid of the cancer? How likely is radiation to 'cause' spread to the lymph glands, ask your Surgeon or Radiographer, not Dr Google or some such.
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I had a few seconds treatment daily for 4 weeks, not including weekends. It took longer to undress/dress than the treatment session ::). How long would your 'zaps' be for and what's the problem if they get rid of the cancer? How likely is radiation to 'cause' spread to the lymph glands, ask your Surgeon or Radiographer, not Dr Google or some such.
Unfortunately CLKD, asking my consultant was fruitless - I was given lies on this. When I questioned the amount of radiation, he explained we're surrounded by radiation in our daily lives and it's not much more. Absolute b*llocks. The amount of radiation used in external beam therapy is 5-8000 times that of an XRay! He mentioned briefly one side effect without going into it in more detail.. I do not like being lied to or patronised and I will not be pushed or pressurised into a treatment based on this.
The side effects? Urinary and bowel incontinence are common though these may clear after a while. (In few cases not). Both bladder and bowel will be unable to hold the same capacity and MacMillan provide special cards so when you're out and you have to go, you can show them in shops to use a toilet urgently. The bladder can need to be emptied every 30 minutes and when you have to go, you HAVE to go....or feel a warm trickle down your leg. There's even a charity set up to help those suffering from the effects of pelvic radiation. Needless to say, this would be life changing for me. I'm very active, I travel widely both UK and overseas and I am also highly reluctant to inflict this on my body without a desperate need to do so.
This radiation isn't for the cancer - the lymph node isn't cancerous. This is preventative - as was the suggestion of chemo. The fact I'm being persuaded to put up with life changing side effects for a 'might' is one thing, the fact I have been given scant, incomplete and incorrect information is another thing and doesn't fill me with confidence at all.
'Dr Google or some such' provides excellent resources (look at this forum!!!!). I am not some teenage girl spending my time on magazine sites, but instead casting a wide net that includes Univadis (via a medical friend's login); PubMed; Cochrane Library; as well as a wide number of natural resources. Although in general I find the NHS sites somewhat biased and tend to avoid these (a lot of the info is written by Datapharm, who are a conglomeration of pharmaceutical companies), I found the Macmillan site refreshingly honest and supported by case studies. On cancer forums I have found people who have undergone the radiation and are struggling with the side effects.
Help in this has come from unusual places. I posted on Facebook and one of my friends (a Dr in physics working in research in Zurich) has sent me some research material from her colleague's PhD. Another works closely with a leading doctor in a UK Alternative Cancer Charity (whose patrons include royals, as well as leading medics) and last night I ended up with a two page email from the founder. It was reassuring in that much of what she suggested I am already doing, there were a few extra protocols I can include. Some old friends have popped up with their own stories.
Should the node need removing, there are also other options - laparoscopy (key whole surgery). This is also a fall back if it does show signs of becoming cancerous. Again this wasn't mentioned by my consultant.
Had I not investigated, questioned or challenged the medical profession, by now I'd have undergone a 5 hour operation with a colostomy. Instead I am having treatment for a tumour which is showing amazing results. Whilst the consultant believes that meditation may be helping the treatment along, I am more convinced of it being the nutritional protocols - which have been as carefully investigated and researched as the conventional options.
I have promised my partner that I'll keep an open mind over the weekend (I'm off camping with 100 others so will be distracted anyway), but on Monday it's likely I'll be emailing the consultant to withdraw my consent for the external radiation. It may be right for some, it may indeed be essential for some. It's not right for me.
GG x
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GG
I am sure you will make the right decision, whichever course that may be. Your research is amazing and how you absorb the information
I would be totally and utterly frazzled by all the conflicting info
It's also great news how much the tumour has shrunk
I just know you will decide on the right action to take
Lots of hugs
Annie xxx
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Thanks Annie.
In a strange way I have to say I'm enjoying the journey in that I'm learning sooo much. I'm naturally curious and also cynical when I can tell someone is bullsh**g me, as my consultant was on Tuesday - it's only natural that I'll come home and find the info myself if not given it. As indeed we're all doing on this forum - how many of us have used the information on here to confront our own GPs when we know and feel we're not on the right paths? Coming from a family of medics probably means I'm even more cynical about the system than most :)
The hardest part in this is not keeping my own spirits up (or knowing what feels right for me) but rather keeping my man on board. I've done months and months of research whereas he's hearing everything second hand from me and it doesn't have the same strength. He's scared and last night he had a huge migraine which I'm pretty sure was stress induced. He was massively reassured when the email from the cancer charity doc covered most of the things I've already been doing - not that he doubts me, he's just never come across this before and worries.
Anyway, despite what's going on in my @rse, I'm feeling quite fabulous and it's even better this weekend as we're off camping :)
GG x
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And isn't it meant to be lovely weather ? Hope you have a lovely time
Annie xx
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Such support from other places other than the NHS! well done you! I can feel a book coming on ;).
I remember a Surgeon telling a friend: 30+ years ago: that he didn't believe that the amount of chemo given was correct, that he felt it was too much and that the amounts should be tailored to each patient. However, no-one at that time was brave enough to take the step of cutting back the doses given. He thought that treatment should have been like those of animals, a far lesser dose that was prescribed. Who knows, Life is Trial and Error. Whilst under-going my treatment I felt that I had taken on the cancer and was doing something about getting rid of it!
Also - why would a lymph node require external radiation ……… where is the node situated exactly that it would be affected ………. :-\ ……… lymph nodes are there for a reason : to fight infection? :
Enjoy your camping trip! Is this Glamping, under canvas, yurts, mobile 'home' ……… if you feel well despite treatment then get out there Girl, Go for It!
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Also - why would a lymph node require external radiation ……… where is the node situated exactly that it would be affected ………. :-\ ……… lymph nodes are there for a reason : to fight infection? :
Enjoy your camping trip! Is this Glamping, under canvas, yurts, mobile 'home' ……… if you feel well despite treatment then get out there Girl, Go for It!
Exactly CKLD - not only is the node there for a reason but it's not cancerous. The Prof wants to remove it just in case there are future issues.
I'm feeling fabulous and the photo I've taken of me yesterday "during treatment "shows me looking slim and tanned, sitting in the sun outside my camper van - happily recuperating mind and body while those pesky cancer cells are shriveling up inside me. :-)
Have a fab weekend everyone everyone,
GG x
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I don't understand why the lymph node requires removal at this stage? mine were removed and sent to histology to see if there were signs of spread - which there wasn't.
Hopefully your holiday venue will not be blessed with rain >wave< …… my camper is outside as I'm replenishing cutlery, clothing, soap etc. …….
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hope you have a great weekend GG. May the sun shine and you have fun x
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I don't understand why the lymph node requires removal at this stage? mine were removed and sent to histology to see if there were signs of spread - which there wasn't.
They don't think the node is cancerous and there's nothing to suggest there is - I guess it's just belt and braces. I've emailed the Professor this week to let him know I've withdrawn any consent for external radiotherapy. He won't be best chuffed with me I suspect but it's my body...
Oldsheep it was last weekend we camped - and had a fab time. It's not often you come back from Stourport with a sun tan :) Off again at the end of the month, I guess I'm going to have to stay home and do something to my garden this weekend.
GG X
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Lymph nodes are there to alert the body of infection …….. :-\
Glad your trip away was good!
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Lymph nodes are there to alert the body of infection …….. :-\
Indeed. I'm not sure there's anything in my pelvis area I want rid of (or burned to a cinder), apart from the little tumour. I'm quite attached to everything else in there, and as long as it's behaving itself, then I'd much prefer to hold onto it rather than wipe it out 'just in case'.
GG x
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I agree. If there's no swelling or irritation, pain/discomfort it's another anaesthetic for what reason? Probably a need to discuss before proceeding?
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I agree. If there's no swelling or irritation, pain/discomfort it's another anaesthetic for what reason? Probably a need to discuss before proceeding?
I'm not proceeding. I told them at the beginning I wouldn't have chemo, I've emailed them now to confirm I won't have external radiotherapy either....and am feeling much better having made my mind up conclusively on it all.
GG x
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Good luck GeordieGirl - as you say it is your decision and one you are comfortable with. Everyone reacts differently both to the decision and the treatment in my experience and you have obviously done lots of research. I must admit I wouldn't be brave enough not to go for belt and braces but that's the kind of person I am in other ways too.
Taz x :)
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GeordieGirl - I was wondering this morning what your decision was.
I can understand it completely.
Are you due to see your lovely bottom consultant anytime soon?
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Good luck GeordieGirl - as you say it is your decision and one you are comfortable with. Everyone reacts differently both to the decision and the treatment in my experience and you have obviously done lots of research. I must admit I wouldn't be brave enough not to go for belt and braces but that's the kind of person I am in other ways too.
Taz x :)
Funnily enough Taz I feel so much more positive about this than if I'd simply jumped on the standard conveyor belt. I won't simply have the tumour zap and then leave it at that, I'm following a strict dietary protocol that is known to help. Orthomolecular medicine (as it's called) has some very eminent scientists, physicians and Nobel Laureates at its helm (http://orthomolecular.org/history/index.shtml (http://orthomolecular.org/history/index.shtml) and yet is largely disregarded by the NHS, paid lip service to only in the rather lame instructions to eat 5 a day. There's a lot of fascinating and compelling research on orthomolecular medicine, as well as huge numbers of cases where it's helped where conventional medicine could not.
I do admit to having to really question my convictions on this route, we're all so very conditioned to believing in our medical profession and expecting a magic pill that it's really tested me deciding which route to take. I'm actually choosing the best of both, with the low dose contact radiation to zap the tumour, and the nutritional 'medicine' complementing this. And my instinct is happy with my choice :)
I was meant to see Bum Doc for 5 days next week for the external radiation, I'm now waiting to see what they want me to do next. I must admit though I'm excited to see how much the tumour goes down in the interim, after the first session it had shrunk significantly.
GG x
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I'm glad you enjoyed your break away
Well done you for standing by your decision, I know you know what you're talking about, I'd be running round like a headless chicken not knowing what to accept/decline
Big hugs
Annie xx
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Well done you for standing by your decision, I know you know what you're talking about, I'd be running round like a headless chicken not knowing what to accept/decline
Big hugs
Annie xx
I really, really believe in instinct Annie. Last week at the hospital my instinct was screaming at me whilst I was being pushed into having a CT scan to be marked up for the external radiation. Emotionally I felt so dreadful and at complete odds with myself, I just knew it wasn't right for me. It's been one huge relief to have actually made my mind up, and the more I've read since, the more and more and more convinced I am of it all. I'm sure Bum Doc won't be overly happy with me but I'm sure having a challenging patient every now and then works well to keep them on their toes :)
GG x
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Instinct is a wonderful thing.
It has saved many a life I'm sure, especially with mothers and children when you instinctively know something is wrong.
It's great that you can apply that to you and go with a gut feeling that you know what is right.
Honeybun
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Update:
After only 2 treatments (a total of 2 minutes!) and a HELL of a lot of work on the nutritional side, cutting out most wheat, sweet, meat and eating predominantly organic fruit and veg, my tumour has shrunk an amazing 80% ! The Bum Doc is amazed and very happy with the results. I'm thrilled but not surprised :)
I allowed myself a little celebration at the weekend as we were at a VW festival, but despite having craved a cake for ages, I've got to say it was a little disappointing. I think my taste buds must have altered over the last few months whilst I've been feeding them different foods. That's a good thing of course as I have to view my revamped diet as a lifestyle rather than a treatment, it's not just a case of getting rid of the cancer, but ensuring it doesn't pop up elsewhere.
I've also hooked up with a body of people who have treat their cancer naturally - one lady was sent home to die with her terminal pancreatic and liver cancer as the medics could do nothing to help her. 4 years later she's alive and very well and giving lectures on nutritional healing ( http://cancer-acts.com/our-story/ ) And still my cancer hospital continues to serve sugar loaded food, processed cr@p and fizzy aspartame drinks to its patients...... really??!
I've had a third treatment and will find out the results in a fortnight but I'm pretty sure it'll be gone by then.
I'm so very, very happy I followed my instinct on this, even though it was scary when faced with the choice and a consultant who was strongly advocating surgery, and another who wanted chemotherapy and external radiation. The lesson it's taught me is - never be afraid to challenge, and don't see medics as some kind of omniscient gods who know everything. I've two consultants who disagree with each other never mind me, hm.
GG x
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So glad to hear your news GG.
It's very worrying to hear the huge differences of approach between your consultants. How on earth are we supposed to get the correct information? I suppose they are all human and each will have their preferred way of doing things, but even so............
How is your current consultant taking the fact that you aren't having radiation, is he ok about it?
Hope all goes well when you get your results in a fortnight.
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The different opinions didn't surprise me to be honest. My older sister has had a hell of a cancer battle for the last decade and it hasn't been at all unusual to hear opposing points of view - unfortunately. Sadly after body-obliterating chemo, extensive radiation, a bone marrow transplant and many years of top up chemo, her cancer has returned yet again with a tumour on her lung. Needless to say, she's started to look very closely at her lifestyle too to ensure she's doing all she can to fight this, although she's more likely to go with conventional treatment than I am.
How is your current consultant taking the fact that you aren't having radiation, is he ok about it?
He's not best pleased at all - apparently we're not supposed to challenge these things. ;) He didn't push me overly hard when I refused chemo (and having since seen the ridiculously low impact this has on bowel cancers I can see why), but he was more persistent on external radiation. We've agreed to disagree on that, I have however agreed to being more closely monitored over the next couple of years by MRI scan.
GG x
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What ever the outcome for you, you have gone your way and it helps healing. Not having to battle against the Establishment gives you more time to get on with Life!
Hospitals will feed patients what patients are used to eating ::) - good or not. Several 'celebrities' have tried to re-orgnasise the NHS kitchens but from cooking in kitchens on each Ward, it was moved to a central kitchen and delivered by trolley to each Ward, before being out-sourced. Many of the foods offered weren't what I fancied anyway …….
How are you feeling generally? :foryou:
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What ever the outcome for you, you have gone your way and it helps healing. Not having to battle against the Establishment gives you more time to get on with Life!
Hospitals will feed patients what patients are used to eating ::) - good or not. Several 'celebrities' have tried to re-orgnasise the NHS kitchens but from cooking in kitchens on each Ward, it was moved to a central kitchen and delivered by trolley to each Ward, before being out-sourced. Many of the foods offered weren't what I fancied anyway …….
How are you feeling generally? :foryou:
Yes I agree - apparently there are research reports concluding that outcomes are better if the patient feels they have some control. I may have taken that a little too far in my consultant's eyes but it works for me. It's good that the NHS does allow us the element of choice though.
How am I feeling? Absolutely bloody well amazing ;D My cancer "therapy" has consisted to date of two 1 minute shots of xray therapy up my backside; lots and lots and lots of organic, nutritious food: a complete de-stress and delegation at work: and a lot of time spent away in my new campervan. A highly recommended approach. :) It does make me smile when a number of old friends message me saying they "didn't realise I was poorly" - I'm anything but. I just have a rapidly diminishing little tumour where the sun don't shine. The trial in all this will be making sure it goes and stays away. I'm ready to rise to the challenge.
One thing that I did find rather strange in all this, not one consultant or medic has asked about the potential causes / background of my cancer, or looked at my lifestyle. At all. What a missed opportunity if this is the same for every patient they see - a significant piece of research missed. By ignoring the causes and just suppressing symptoms aren't we at more danger of a recurrence?
Curious.
GG X
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This is fantastic news GG !
I've always felt (and from chatting with you) that you're very much your own person and will fight for what you believe in, and the proof is in the pudding here
Big hugs
Annie xx
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Yep. As an ex-orthopaedic secretary it was usual to ask about the immediate problem but rarely was the person's background discussed. I do remember a Consultant looking at a lady complaining of back pain, he immediately told her to go home and change her footwear ::) ………. never examined her as it really wasn't worth it! I can't remember if she came back to Clinic or if a change of footwear solved her problems …….
Having control helps in most aspects of our Life ;).
I never felt poorly during my treatment, tired from the un-expected diagnosis and worry about 4 weeks of radiation treatment but never ill until I took the Tamoxifen.
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Hello GeordieGirl and I'm glad to see that you are doing so well.
Like you I wonder why Doctors are not more curious about how non medical issues can impact illness. I understand the limitations of anecdotal evidence but collect enough of these stories and they become data!
I had a colonoscopy which showed my Ulcerative Colitis had resolved and my bowels were completely normal, the Consultant was impressed and said 'whatever you are doing, keep doing it' however he showed no interest in discussing it further. Perhaps this is why forums are so popular as they allow people to exchange information and experience and therefore knowledge.
Take care and wishing you well on your journey.
K.
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Kathleen - that's an opportunity missed! maybe you should write a book, there are lots of Small Publishing Companies in the UK!
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I had a colonoscopy which showed my Ulcerative Colitis had resolved and my bowels were completely normal, the Consultant was impressed and said 'whatever you are doing, keep doing it' however he showed no interest in discussing it further. Perhaps this is why forums are so popular as they allow people to exchange information and experience and therefore knowledge.
Kathleen I hear that so many times (for me, and from a number of people I know following similar paths) - how bloody frustrating! I just can't understand why our medics aren't interested or even curious about finding out? Cancer Research UK (which I'm seeing under an increasingly different and not so favourable light as my journey continues) claims there is no scientific evidence that diet helps cancer. Not only is this a load of bull as there are countless research reports on PubMed, but unless anyone in conventional medicine is the least bit interested in collating the info from patients then a lot of useful information is being missed.
I wonder if they ask lung cancer sufferers if they're smokers? Why then do they not enquire about diet at least for those with colon issues as a very minimum?
Out of interest, what did you do to cure your issue? Was it purely dietary?
Hurdity - yes, it was Camperjam and a fabulous weekend :). I'm itching to go to Bugjam at Santa Pod but it's my weekend with my girls and they're revolting, they've been camping since before they were walking and have decided they're fed up with it. Taking 2 reluctant and stroppy teens with me really isn't my idea of fun :-\
GG x
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There's a get together for VWs at Malvern isn't there and maybe at Billing Acquadrome?
Onwards and upwards …...
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Hello GeordieGirl.
I've just noticed your post and thank you for your interest in my condition/treatment.
When I was diagnosed with Ulcerative Colitis in 2010 I read everything I could find and in addition to my medication I began taking fish oil supplements for their anti inflammatory properties. After a short while I was able to stop the drugs and I remained well on supplements only. Two years later I had a mild flare and was prescribed a different drug to take, I then added Olive oil to my diet.
I have been well since 2012 and now take a mild anti inflammatory drug daily, I have continued to make changes and improve my diet. I also keep up to date with the relevant research and follow forums.
Basically my diet consists of daily fruit and veg, nuts for snacks and plenty of water. I avoid dairy and use soya instead. I also take probiotics regularly and I've just started making my own Sauerkraut! Everything I consume is designed to be anti inflammatory and helpful to the gut and the microbiome.
If you have any questions feel free to pm me and I'll do all I can to help.
Wishing you well and take care.
K.
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Sadly there is little time or interest to treat health issues holistically in the NHS. There is so much specialism by doctors, who tend to be tunnel visioned. Problems in one area will create others in others.
Not only does life style choices and environment affect your physical health, but also emotional health will affect your physical health. It is interconnected. Many of us who contribute to the forum experienced difficult childhoods experience ongoing physical health issues throughout their lives, even if they have been fortunate enough to build happier lives as adults.
I have been told that my subconscious delayed my puberty, periods were problematic and problems continue post menopause. I have had various ongoing health issues. I am convinced that my health issues are related to childhood experiences and how I responded to those experiences. It is like things were knocked out of kilter early on. What do others think?
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I agree Ju Ju.
My health is not too bad but my anxiety is not great. It started after I was on HRT so in theory it wasn't caused by hormones. However I have had some traumatic events in my life. Loosing my daughter being the huge one. I know I was never the same after that. Hubby had a heart attack, then his other illness. Trouble with my son, it's all added up over the years and has now came along to bite me firmly on the bum.
My daughter told me the other day that she wasn't at all surprised that I suffered with anxiety as I had spent so long being the strong one and forgetting to look after me. She is a very incite full young woman.
Honeyb
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I have had various ongoing health issues. I am convinced that my health issues are related to childhood experiences and how I responded to those experiences. It is like things were knocked out of kilter early on. What do others think?
^ this
bless you Ju Ju, I can so relate to this. The person I am today was modelled in my formative years. I responded the only way I could and it caused me harm that still affect me to this day.
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You might find the information on this site relevant:
http://drgabormate.com/book/when-the-body-says-no/
He has a chapter of the book on the site here: http://drgabormate.com/preview/when-the-body-says-no-chapter-one/
His resources page is also interesting: http://drgabormate.com/resources/
He has a link to the ACE study here: http://www.acestudy.org/
In Canada Dr Gabor Mate is very well respected and his books are excellent.
There's also Alice Miller's book - the body never lies http://www.alice-miller.com/books_en.php?page=11
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My phobia was started within 24 hours of being born so is a learnt response. No amount of CBT has helped. We are what we are, we are what we eat …….. family anxieties etc. can be passed down the generations too!
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My phobia was started within 24 hours of being born so is a learnt response.
I'me intrigued CLKD - Can you really remember the first 24 hours after you were born?
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Of course not but I know what happened …….. and the after effects of treatment which has troubled me down the years.
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How are you getting on?
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I have been thinking of GG recently too.
Anyone got an email. I'm off for a look cause I think I may have it.
Will report back if I have.
Honeybun
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Good idea. I woke thinking of her over the weekend - maybe in some treatment sessions?
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I looked back as I thought I had her email but unfortunately I don't.
She runs a travel agency so perhaps this has been a busy time.
Hopefully she will look back in soon.
Honeybun
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Weirdly, I too was thinking of her. Hope all's ok x
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Me too. She's not logged on since July.
Taz x :-\
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Crikey, I hadn't realised I'd been gone so long!
July and August are always manic for me workwise, fortunately any health issues resolved themselves before this so at least they weren't interrupting the flow. A few ongoing arguments with medics still along the way (they're not used to patients not doing what they're told apparently) but that's becoming almost a sport for me :)
Now I just need a few days to read through all the posts I've missed.
GG x
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So where are you with regards treatment and follow-up Plan ???
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hope all is going well GG