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A support group for patients with Lynch syndrome (also known as Hereditary Non-polyposis...
I am very sorry to hear that you have had to join this forum. However,
as others have said, you have found the right place for support, for practical
and useful advice, and for just having a rant.
assure you that you are at the most difficult time now, and that things will
get much better from now on. The initial stage, of shock and worry is the worse
stage as you worry for yourself and your family, you have uncertainty about the
treatment ahead. You will find it very difficult to believe, but I can assure
you that you and your husband will feel a bit better when you know what your treatment is and
you will feel even better when you actually start the treatment, as you are
then fighting back and doing something positive to help the battle.
I was diagnosed with a bowel tumour last year at the age of 44, with two young boys. I was devastated and in shock. A friend of mine who has gone through breast cancer advised me that I would feel better after treatment started and that the first few weeks are the worst, until you start the treatment. She was right, for me. Since then I have successfully completed chemotherapy and radiotherapy and my tumour has shrunk to just scar tissue.
treatment of bowel cancer is now very advanced and successful and improving all
the time. Do not try to do research on the internet on bowel cancer as
the data is inevitably out of date. One of the others on this site, Lee, has
found a video on the MacMillan site from a specialist doctor on bowel cancer
which is very reassuring about the treatment of bowel cancer.
find out what your treatment is, come back onto this site as you will receive
lots of practical advice and reassurance on the treatment and how to minimise
any side effects. Do not be too daunted by chemotherapy or radiotherapy side
effects - they are not pleasant but they are manageable and a small price to
pay for successful treatment.
seem impossible at the moment, but try to stay positive and not to worry too
much. I am a big fan of complementary treatments, but always in addition to
chemotherapy/radiotherapy and surgery - never as a replacement to these
established, tried and tested treatments. When I was diagnosed there was an
article on the bbc website about a trial in the Netherlands of 4,000 patients
and the benefits of aspirin for those suffering from bowel cancer (search on
google for bowel cancer + aspirin). As a result, I take an aspirin each day. I
also take lots of multi-vitamins, turmeric, wheatgrass, and selenium. Always
check with your consultant before taking any of these pills, and if you have
chemotherapy you may be advised to avoid vitamin B and Folic acid as they can
interfere with chemotherapy. I take the view that these give the patient a
small degree of control and fighting back, and that is very important when you
feel powerless. They may just have a placebo effect, but it is an important
psychological benefit for a patient - or it certainly was for me at
wishes and try not to be too scared - you are not alone in this fight.
have to send you a big huge hug.
Waiting for tests and results is tough. The scans are simple enough. Then the docs can get husband into treatment. Will probably be small comfort but treatment can be worse than disease. But. . . it is curable.
My husband was diagnosed Jan this year, A work mate, my mortgage advisors father in law, a family friend and apparently my next door neighbours wife have all beaten the odds. The family friend and neighbours wife I wouldn't have guessed if not told.
The news is a bolt from the blue of all the bad stuff you wouldn't wish on an enemy but it will find a way of filing into the little recesses of your mind so that you will cope.
Hang tight and be Mummy. Daddy is still holding your hand.
I am so glad you have joined this group as I'm sure you will find it a great support to yourself and your husband.
Please know that the way you feel right now WILL improve and the enormity of the initial shock will get better. I really understand how you feel as we all do - and at this time it is very good to get some support as you are.
Please do not search the web with out of date information that scares us ! Macmillan and Beating Bowel Cancer are both superb with all the required and accurate information.
It does get so much easier - please believe me. I understand the disbelief and the feeling of devastation - BUT it really does get easier as you go along and a plan is made and support is given.
I worried for 2 weeks and then realised that the worry wasn't helping me at all - so began to carry on as normally as I could - which I have and it has helped. I haven't labelled myself in my head as 'with cancer' but think of it as an illness that I am recovering from - because that is what it is. But initially the thought of having the Cancer was overpowering. I don't feel that anymore. Of course I have up and down days - which is the way it will be. Thankfully more up days with a few down moments !
I was diagnosed with Rectal Cancer just before Christmas 2012 ( great timing !) I have had the radio / chemotherapy which you will hear and learn about - it was all manageable and the thought of it for me was worse than having it. Darshin has mentioned to you that I had 5-8 cm tumour which has now disappeared. My friend Matt - has had the same results and I know he will reply to you with his positive story and lots of helpful information and be a great support to you both.
I currently feel and look well - go to gym and loads of walking etc ... I am 9 weeks post the chemo and radiotherapy which lasted for 6 weeks. The treatments are all manageable and we can explain more later.I currently feel a bit down about having the surgery and the thought of having to sit still and rest for about weeks after ! So this is the bit I am currently trying to come to terms with at this stage.
When I first wrote on here I kept reading the replies to try and absorb what was being said to me as it is all so overwhelming at the very beginning.
You must both try to not think the worse outcomes which I know you are at present and as I did and probably everyone else on here.
You will find that the NHS service for cancer is the best - in my opinion. You will discover too that the treatments for this are so good now.
So with an 8cm rectal tumour with ? some lymph nodes affected - They said it was sizeable ... but they said that the aim was to CURE. They explained that the treatment plan is long but the outcome aim for it to have gone. Mine cannot be seen now by scan or eye but I am having surgery in a couple of weeks to remove that area to make sure.
I really feel that when you both know a little bit more it will become easier and you both feel more positive that you will be beating this..... Getting rid of this tumour and at his young age too and carrying on with life as before. A year of doing this will be worth it in the end.
Hoping that you both feel a little better very soon :)
Very Best Wishes to you both ,
hi matt im going to look up about the asprin sound's good but in which forms do you take the tumeric and wheat grass only there are so many vitamin websites its difficult to know which are genuine.
Hi again Angela,
I am the same as you with lists and being very organised ! I find it frustrating to be forced to change my plans but I have to think that it is just for now and this year will be different and then I will carry on again.
Although at the moment my life hasn't changed much at all. Also had to cancel to sunny holidays which was sad and eventually I managed to get the deposit monies back ! I had been organised and booked really early last October and had saved the money too ! Because I had booked so early I hadn't at that booked got the insurance ! But after a GP letter sent I got the money back :)
I was also asked about if wanting children / sperm freezing etc ... but I did not ! My long term ex partner has one son who we raised and my partner - also a Lee has 4 ! ( all adult now ) But for you it sounds like the right thing to do. Your husband needs to get busy :)
It is all these things that are unexpected. I feel you find that as it all starts these things make us must stronger than before and we are surprised at how well we cope.
However, you are a planner and you will do this and you will support each other. We are young ! Well I am much older really at 42 ! We have age on our side which is a massive plus and I assume your husband is other wise fot and well.
I hope you can take something from what we can share with you.
I found that some people when told the diagnosois ( friends and family ) became very upset and almost need reassuring themselves ! I had to say to them that is what i have been told and that it is curable etc .. So you may find yourself reassuring others too ! There is no doubt that it is a shock for all - BUT ... that all eases and then it just fits into daily routine and people are pleased to see us getting on with it all.
I found it easier to tell everyone and not shy away from it. Some days I may have told 3 or 4 people and then I found I had had enough and couldn't discuss it again until the next day ! So be warned that kit can be good to talk and also draining on the other hand,
You may be able to go to Devon a bit later on in the year - in between treatments etc ... but it is something that has to be planned later when we know more. We have had a couple of weekends away etc ... sometimes that is just as good as you go away more often. We love Devon too - but only in the sun :)
Both have a good weekend and try and keep positive - as that it the way to be and that is the way it will be :)
Big hug to you both, Lee
I can remember the shock of my husbands diagnosis so well. He was the fittest person in the family so it was hard to take in.
Like others have said, it is really tough waiting for tests and results and a plan of treatment but once you have that, when you know what's what and what's going to be done about it you settle into a new kind of "normal".
My husbands primary was very large but after it responded to chemo it was possible to operate and remove it. Treatment is improving all the time so try and stay positive.
This is a wonderful and supportive group so I am really glad you found it ,
I take the turmeric in tablet form. i use Doctor's Best - Best Curcumin C3 complex - 500 mgs. I take one twice a day. I also take the wheatgrass in tablet form. I use Rainforest Foods 500 mg tablets. I take 6 of these all at once. I buy all these from Amazon. I do know that others on here buy the wheatgrass in a purer form from organic food shops. For me it is the convenience of taking it as pills.
I also take a wide variety of vitamins - Selenium, Vitamins C,D, and E, plus Flaxseed oil tablets, plus Immunity Defence pills from Seven Seas.
I'm sorry I have not read the whole thread but just saw your questions about tumeric and wheatgrass and thought I'd share my knowledge on this.
Although you can buy tumeric tablets, you can just buy tumeric powder from all asian supermarkets and I'm sure Tesco, Sainsbury's, etc also sell it. You can just take a teaspoon in half a glass of warm water or mix the powder with a little honey and just swallow it. It's not great tasting so try not to take too much at a time but it is bearable.
As for the wheatgrass, we have a juicing shop in our local High Street in Eastcote, Pinner, Middlesex (just in case you are not too far) so I just drive down each day and drink a shot. I pay him a month in advance and he gives me a discounted price. If you are not so fortunate to have a juicing shop/bar nearby you can purchase it frozen. It's not as good for you as fresh but I'm sure it's better than not taking at all. I've heard but could not confirm that it is better frozen than in tablet form.
I bumped into someone who was using a company that deliver it frozen to your door. It's a family run business and she was happy with them and she did say that although she did not have cancer, she felt a difference since she started taking it. The lady who runs it along side her husband is called Renata and her number is 07846 356529. I've not used them as I thought I'd stick to having it fresh seen as it is so local so cannot not tell you what they are like but teh lady I spoke to said they were great to deal with.
Hope this helps.
I can only reiterate what the others have said but just wanted to send you a big hug!
In July it will be 2 years since I was diagnosed and I can't believe I am still here and able to actually live again. I'm not the same as what I used to be but I am finding a new normal.
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