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Just Diagnosed

jobo

In a bit of a spin

Hi all

I had a colonoscopy last Thursday for some rectal bleeding, followed by a CT scan when the dr found a tumour. Results from the biopsy are that it is malignant but CT scan was clear. I spent yesterday celebrating the fact that it isn't anywhere else and was so relieved.

However, today I am on a downer.

I am 39, married to a wonderful husband, with 3 daughters, aged 17, 14 and 9. They are very upset but seem to be coping well. We are being as transparent as possible (with the older two) without scaring them.

I am meeting with my Dr tomorrow afternoon for a pre-op check and going in for a bowel resection on Monday. It's been very quick and I can't quite come to terms with the fact that I have "bowel cancer".

I have no idea what to expect. I've hardly eaten this week after the horrid bowel prep and have lost half a stone - I can't afford to lose anymore but have little appetite.

I have suffered with recurrent severe cystitis so am concerned about having a catheter. Will ask the Dr tomorrow whether I should take some of my antibiotics prior to the op.

Also don't want an epidural as my lower back/pelvis plays me up from time to time.

I was supposed to be playing the main part in a pantomine this Saturday and Sat 4th Feb for which we've been rehearsing for 3 months. It's been cancelled. I feel awful.

We are also supposed to be going to Florida on 28th March to celebrate my 40th birthday. Have no travel insurance yet......... This will be 8 weeks after op and I've no idea whether we'll be able to go.

So any advice for the op, tips on recovering afterwards, anything to take to hospital i.e big knickers! what to eat, when you can eat, etc would be really appreciated.

Hazel

I'm with Alison it's what we want to hear the most on the forum stories of good news, for those of us who don't expect the same it really lifts us up too. Have a great holiday it feel slike it has came at just the best time! it should be really joyous!! Thanks for the heads up on the travel insurence makes me mad too that those of us who need to get away and relax have to pay the premium, and yes please photo's and sunshine would be wonderful! smile

suze

Delighted to hear about your insurance quote --- did you post the name of that company in the thread about insurance? It will be worth saving there for other people's future reference

jobo

Good idea Suze - have added a post to the travel insurance forum!

xx

suze
jobo: Good idea Suze - have added a post to the travel insurance forum!

xx

Good, I think you got a great bargain, and other ppl will be grateful for the tip .... I might even plan to travel further afield myself if they will do this for the US of A !

I usually stick to Europe cos it is covered by our home insurance travel policy ... tho not for anything related to cancer, at that!

Mary HB

Dear Hazel and Alison

Encouraged by reading your posts, I just wanted to share my good news; last Thursday I heard from my Oncologist that my quarterly blood test was okay smile so now I can put all the worry on hold for a while, well at least until the Scan in three months time ! However, I can still remember very clearly the surgeon telling me after my liver op 18 months ago that statistics suggest that I'm at a very high risk of more secondaries for 5 years. It's always there in the back of my mind.
This evening, I have just returned from doing Grand-ma duty for my grandson Matthew. To be honest when I had my liver resection I never thought I'd be aroumd at this point in time, I wouldn't even let myself think about the Olympics later this year 'just in case' and I certainly never thought I'd be able to look after a lively 2 and 1/2 yr old after a 2hr train journey, all on my own grin I had a lovely time lol
I have found this forum incredibly helpful during this time; it has taught me to live in and appreciate the 'present moment' and also to work at helping myself.
Thanks to all the regulars, your 'pearls of wisdom' have been really supportive, please keep them coming and best wishes to those of you about to embark on more treatment.
I do hope my good news help some of the new-comers; it's not always doom and gloom smile

Best wishes

Mary

alisonhelen

Oh Mary! That's fantastic news, I'm so pleased for you and your family. Yes, we must all share our news, good or bad. The good lifts our spirits and gives us hope. The bad grounds us, make us take stock of our own situations and maybe enables us to share with the not so fortunate, tips, hope and the feeling that they are not alone, indeed isn't there always someone in a worse situation than ourselves?

I too will be babysitting my 5 month old grandson Fenn tomorrow, yes, with broken ribs and a black eye he insists on whacking! He is the light of my life and I treasure every minute spent with him.

I'm sure you know to keep watchful on yourself and I wish you good health for the future and beautiful clear scans! Keep in touch on here and keep us informed on your activities, new grandchildren etc!

With best wishes, Alison

Hazel

I am glad that you shared your news Mary, and it's good to know that the forum has been a help and you're right it isn't all doom and gloom at all! i can only reiterate Alison's post here's to clear scans and lovely times with Matthew....! Take Care Hazel

jobo

Good news Mary! I hope I get to be a granny myself one day! Having cancer at 39, and then being given the all clear takes a bit of getting used to! It's hard to believe that the whole journey has only taken 3 weeks from diagnosis, surgery and then results to say I'm clear but my, what a journey!

And I'm not really sure where to go from here...... Obviously I'm still recovering from the op which was 12 days ago but am feeling better and wanting to do things but am restricted. Can't imagine having energy again to rush around like I always used to and desperately feeling that we need a plan for a future to concentrate on together as a family. But have the nagging doubt at the back of my mind that it might return..... is that something you ever get over? I know I'll be screened regularly which others of my age won't so if it pops up anywhere else it should be found early enough to do something about. But can't think of anyone who has had cancer at a relatively early stage in their lives that has gone on to live a life not blighted by it's return.

I want to live each day to it's fullest but was drifting before the diagnosis and can feel myself returning to that state. I want to appreciate every moment but don't really know how!! I'm not very adventurous, am organised and a planner. Don't like surprises but need a plan for my future to work towards. I'd love to move to the country, have a house with some land, with a couple of ponies, chickens etc and my daughters would love to do that to but schooling and their ages (17, 14 & 9) makes it difficult and I desperately don't want to move away from my family. I've needed my mum and dad more than every thru this journey and want to spend as much time with them as I can. Think they'd probably come too............

Anyway, don't really know the point of this post. But it's helpful to get down how I'm feeling. My arms are so bruised and sore from the fragmin injections and we have another two weeks to go. Think we'll have to try my tummy now the swelling's gone down. Oh how I hate them and they are bringing me down! But as my husband keeps reminding me. I HAVE NO TUMOUR!!!

Hazel

Jobo

I can relate very well to your post below, i had a very similar response to my surgery nearly five years ago. In terms of getting better it will! come you are only 12 days on let your body find it's way back to health, i have written this before but my benchmark was having the op last day in Aug and i clearly remember on 25 Oct dancing salsa just like i used to as if nothing had happened. You will! get back to normal and in the scheme of things it really won't be that long.
As for living life to it's fullest, well i think we all wish for that but in reality it would be hard to maintain, i think for me it is more about appreciating everything more and not sweating the small stuff, every day on earth with family and friends and just making quality time with them is the important thing. I understand about the idea of moving it is something i have always played with, i have three boys 12 15 and 20 and for the same reason i didn't move as i also have good friends around me and the two youngest are at good schools. However if your girls are up for it and you think that your mum and dad would go too why not? i have seen other people i know move with their children at similar ages and it has worked out ok. Ponies and chickens sounds great i managed even in London to get the chickens, ponies might be a tall order.
The injections are getting you back to your old self, it will! come to an end but it really does drag you down at the time. Maybe thinking more about how you may be able to get that life you want and looking further into what the possibilities are may help you to focus on something. If you relly don't think it is an option then maybe look into all the things you are going to do and experience on your forthcoming holiday, what do you need to buy and pack, what excursions are you looking at taking, informtion about where you will be staying and the area, just to buoy you up and have something positive to focus on.
In the end as your husband says you have no tumour! you did not have any spread so you really are in a great position, yes just keep an eye in the background on how your body is over the following years, enjoy life, in the end you have a great family around you and that is often all in essence that you really need.
Take Care....Hazel x

alisonhelen

Jobo! Please wait and catch breath after your op before deciding big decisions in your life! Moving is a HUGE decision for anyone and can cause a lot of stress and tension in an already stressful time of your life. I remember explaining to someone that when you have the diagnosis of cancer it's like being told that a best friend has died very suddenly, except that someone is you, yes, you gradually come to accept the situation and some of us are better able at that than others. I think I have been very lucky in my acceptance that my cancer at stage 4 will probably 'get me in the end', but have always felt that on the day I was told, something died inside me that day. It takes a long time to mourn a death and we are told when losing a family member or close friend that you should take a year before deciding on doing something drastic like moving and I really think that after diagnosis you should take a similar time before changing your life too drastically!

At the moment, enjoy your girls, they too have a lot of adjusting and thinking to do, don't upset them more at the moment as they too need their close friends near them. You are very lucky to have your parents nearby, I have never had that luxury and yearned for them to be nearer to see their grandchildren grow up and be able to share their achievements in life and also just have them in my life more than a couple of times a year.

Am so pleased for you that your recovery seems to be going so well, don't overdo things and accept help when it is offered. I expect it is half-term where you are as it is here, your girls will love playing 'nursemaid' and it will be good for them to feel they are playing a part in your recovery!

Keep in touch and keep well!

Best wishes, Alison

jobo

Hi all

Am now 3 and a half weeks post op and recovering slower than I thought I would and have good days and bad. Although I'm able to move around much more easily I am getting increasingly more uncomfortable when sitting down and wondered whether anyone else has experienced this?

I don't have a bag, had a low anterior resection. I find that my bowel habits are still fairly erratic. Have never had diarrhea which is what I expected to have. Some days I go to the toilet between 5 and 7 times, but was constipated again yesterday and last night :-[!! When I sit down directly on my bottom it's very uncomfortable, almost feels as tho something has prolapsed....... It's not pain, just uncomfortable. And it's all the time, not just because I need to go to the loo. Don't know if it's just because I go to the toilet much more than I used to and have to strain more as everything feels so different, or if there's a problem. I'm going back to hospital to see my surgeon tomorrow and my cns says he may do a scan to check all's where it should be. She said that sometimes you get a collection of fluid around the resection so will check for that too. She encouraged me to go and see my GP which I was reluctant to do as she's not a colorectal specialist but I begrudgingly went yesterday but am glad I did as I have a water infection. My bladder has felt very tender and feels very sore when full and as I empty it (and I'm drinking alot of green tea!) but no burning sensation so I thought it was ok and just put it down to irritation from the catheter or swelling. I also have a couple of very sore spots on my tummy which she thinks may be infections underneath so am taking amoxacillin. Feel so much better today already after just 3 tablets.

Will see what the surgeon says tomorrow. I am REALLY hoping that it's nothing as I can't bear the thought of more surgery and don't want anything to jeoperdise our Florida trip at the end of March!

Have an appointment to see the oncologist next Thursday to discuss my options. 

alisonhelen

Hi Jobo, Did you have key hole surgery, because if you did your insides will be very bruised from all the equipment they push around quite roughly inside you. Like you after a while my insides felt very swollen and indeed after a couple of weeks I came out in a lot of bruising all around the area they worked on, but once the swelling went down and the bruising went away everything was fine. I'm glad for your sake that you are being seen by your surgeon who should be able to put your mind at rest if it is something minor and I do hope that everything is OK and 'in it's place'!

Let us know how you get on and like you I hope you get to Florida!

Best wishes, Alison

jobo

Well after more things poked up my bottom!!! the surgeon said that where the join is is quite swollen and is restriction movement a little, hence me needing to strain and sometimes becoming constipated. He said it's not restricted enough to cause impaction so that's encouraging! Has told me to increase my lactulose intake to 6 teaspoons and day and to drink one sachet of movicol (yuck). So am glad it's nothing that needs surgery but am still uncomfortable.

I wonder when the swelling will go down?? It's 4 weeks tomorrow and my tummy is still quite swollen. I'm pretty skinny at the moment but still have this pot belly......

Went out to London with the family yesterday which was a christmas present from FIL. Really didn't know if I was going to be up to it but yesterday was a good day and I'm so glad I went. We got taxis from Euston so no walking involved, saw Matilda, then taxi to a wonderful French restaurant for dinner. Even enjoyed a couple of glasses of wine! My appetite is still not what it was but I just had a tuna salad.

Really lovely to feel alive again and I'm sure the sunshine helps!

alisonhelen

Am so glad for you that the surgeon was happy with how you are progressing. swelling does take ages to go down and unfortunately although you are not as old as me, the older you are the longer healing takes, so try and be patient! You didn't say whether you had keyhole or open surgery in your last post and this also will make a difference.

I'm sure the reassurance from your surgeon, plus the lovely day out you had yesterday, will all add to you recovery, especially the 'mental' part of it! You are probably tired today so try and rest and take advantage of any offers of help you get!

Lovely to hear you sounding happier, keep up the lactulose and movicol though!

Hugs, Alison

jobo

Well we saw the oncologist yesterday and really don't know why we bothered......

Rewind a couple of weeks and I was fortunate to be told by the surgeon that the tumour had been successfully removed, no lymph gland involvement and blood vessels were clear. He said that the oncologist had been in the MDT meeting and agreed that chemo wasn't indicated but would be offered if I wanted it because of my age (39). Who WANTS chemo?? not me!

So we trundled along yesterday, 4 weeks post op, expecting to meet with the lady who had been in the MDT meeting whom, were told, was lovely. The waiting room was packed full and not a single person was under the age of 70. I felt very out of place.

We were called in and met by a young dr, who didn't appear to have read my notes but was reading them as he spoke. He said, " How old are you" Me: (haven't you read my notes) "39". Him: "39, well based on the type of tumour you had you have a 70% chance of surviving the next 5 years and chemo would increase those chances by 3%. The chemo is tablet form and may cause nausea, vomiting, fatigue and soreness on the palms of your hands" (looks up from notes) "Oh, you look surprised, was that not what you were expecting??".

No it bloody wasn't what I was expecting. I just shook my head but couldn't speak cos I would've cried. James was quite cross. He asked him why he was quoting statistics that were the same as before my op, before anyone knew whether it had spread or whether there was lymph involvement. Surely my chances were higher than 70% after successful surgery? He bumbled and said "well that's why I don't like quoting statistics" WELL WHY ARE YOU THEN???? He then kept saying, what I meant to say was...... and then carried on quoting stats that were completely irrelevant to me and my situation. Really not helpful. It was as if he was trying to persuade me to have chemo when it only gives me a "statistically" 3% increase in survival and 6 months worth of horridness.

Don't get me wrong, if it had been anywhere else I would have had it, of course I would, like many of you on here have had to. But, based on what the surgeon told me, I really just need to focus on recovering from this op and getting better and living my life. He then went on about microscopic cells that get disturbed during surgery and travel around the body and may set up camp somewhere else. Cheers for that dr!

I wonder if he gets commission???

Hazel

Oh Jobo

I have just sighed heavily on reading this for goodness sake!!!!! So sorry that you have had this awful experience of what sounds like an inexperienced doctor. So good that you had James with you for support because his crass use of statistics is appalling. I have never ever had any doctor role statistics out to me so far apart from the fact that i had one lymph affected was good odds.
I would suggest that you try and arrange to have an appointment with the doctor who has the good reputation and have a discussion with them, this information has left you reeling it maybe helpful to go through this with them to clarify things and not least to express your concern about his approach, if no one knows that this is how he is relating to patients they can't do anything about helping him to improve.
It is a difficult enough journey as it is without problems being caused by the people who are meant to be treating you and making things better.
That holiday i don't think could come quick enough eh?
Virtual hugs Hazel!

lilianwiles

Hello Jobo,
I am so sorry to hear about your appointment with this junior doctor who was clearly completely out of his depth in this consultation. I realise that everyone needs to learn but this was a crass and incompetent way to conduct any kind of discussion with someone who is relying on the healthcare system to give them the best possible chance of survival following any diagnosis of cancer, especially when you have just had major surgery to cure it.

Nothing I can say will change the memory of that consultation now, but, for what it's worth you are worth so much more than that, and I suspect that if you were to tell his supervising consultant about this disaster, he would be mortified that this doctor had let you, and the rest of the team down so badly.

The decision about whether or not to have chemo with a stage II bowel cancer is not an easy one, and in fact there is currently another question on the forum asking exactly that, from someone who is only 26!

My understanding of the current research suggests that the jury is still out on whether or not it is likely to be effective. Much will come down to what the histo-pathology report said about what type of bowel cancer yours is, and how much is known about how it might behave in the future - as well as how sure the consultant is that he was able to remove it from your body without disturbing it and causing and increased risk of unintentional spread.

There is certainly one school of thought which suggests there may be a be a good idea to have chemo as a preventative measure. But equally, there is another body of research suggests that it might not have any benefit, and that a wait and see approach, and only treat if it does come back seems to be just as valid.

The reality is that it is probably going to be down to individual choice and circumstances. It is your decision to make, based on the best advice and information available to you from healthcare professionals whom you trust, rather than on the basis of some rather empty - and out of date- statistics that have nothing to do with you or your circumstances now.

Do have a conversation with your consultant before you make any decisions about what to do next, and make sure you have all the information you need about your particular case, and explore the pros and cons for each decision - yes or no - before you decide.

With warmest best wishes,

Lilian

jobo

James here.

We met the surgeon again today. He had a look and confirmed that the passage is narrow. He also said that he has never seen it narrow like this so early on.

He has suggested a CT scan (which Jo is having on Sunday) and then to put a device like a balloon in the bowel and inflate it to enlarge the passage.

Has anybody had this done? does it work? I always like to understand things and have a rather mechanical mind. I can't figure out why it will not just close up again after the balloon is removed. Our Surgeon says it will only take 2 minutes or so but maye require 2 or 3 goes.

Also, another question for you all. We are, as I'm sure lots of you have done, looking at diet (for the whole family). Jo is reading the anti cancer diet book and feels that we pretty much had that diet already. However a few people have told me about diets that include special combinations like cottage cheese with flax seed oil.

Another person has told me about how free oxygen in your body can destroy DNA (and lead to mutations like cancer) and that eating certain foods can use up free oxygen in your blood. So antioxidants are good for this. Here's an extract from what he said:
"So in terms of diet, a variety, including fresh fruit and veg is good,
but pay attention to food that naturally seem to last well and
incorporate them. Variety, is an important word, there is nothing
wrong with fish n chips or a hamburger but as part of a varied diet.
Blueberries are nice, so are tomatoes, but not for three meals a day!
If you obsess on tomatoes for flavonoids or cranberries for phyto
oestrogen then you might miss the vitamin E & K in the bread so
variety is key.
Specifically for you, Amygdalin is one of the cyonide group, and yes
in large quantities it is poisonous, but in small quantities it is a
very strong anti cancer drug. It works by being corrispondingly toxic
to cells depending on their speed of growth. You are an adult, you're
not supposed to be doing a lot of growing. If any part of you is, it
will take up the Amygdalin and be poisoned but the rest of you barely
notices it. You find it in bitter seeds, bitter almonds (not normal
almonds) apricot kernels, apple pips etc. the most reliable source is
bitter almonds from holland & Barrett or Julian graves. Do not exceed
2 a day, there have been reports of people eating 10 a day getting
stomache ache but I think you must eat a lot more than that to do
yourself real harm."

And also somebody else has mentioned graviola. I'd never heard of it but it is mentioned on the cancer uk web site here: cancerhelp.cancerresearchuk.org/...uestions/can-graviola-cure-cancer

Does anybody have any experiece of such diets or of graviola?

There seems to be lots of theories and information out there. And I worry about scams.

suze

Hiya James, I am sure the nurses can say more about the procedure ..

I don't know of anyone whose had that balloon device in their gut, but I have had relatives who had it done in other body parts and it has worked, strange, but true, that it can be stretched and not just go back to the same .. :-\

As for diet, I am quite strict on it: eat veg curry every day to make sure I get the turmeric, onions, garlic etc into me and I have berries and linseeds with soy yogurt for breakfast and three cups of green tea a day ... I try to make sure I eat mushrooms and brassicas every week and dont eat meat or much dairy ... if you want to know more about it without reading the whole book I have made notes on it in my own forum:
anti-cancer notes

I am very sceptical about things which use the word CURE in their own publicity .. frankly, it's bvlls**t!
especially if they are trying to sell you something! That is why I like the Servan Schribeber book, he is reviewing all the research and picking out what is known but not trying to sell you anything. He was a doctor himself and that adds clarity to his material. I generally do not read a lot else about miracles etc cos they make my skin creep!

I totally agree with your quote about balance, and that is also in the anti-cancer book about mental attitude .. if trying to follow a certain regime or diet is making you stressed it is counter-productive!

louisah

Hi James,
This dilatation procedure is quite quick to do. It should stretch the area which is becoming strictured or tight, probably due to an overactive healing process. It may take a couple of attempts to get it to stay stretched, but once this is done, it will hopefully help.
There is no real evidence for supplements such as graviola, as mentioned in the article you attached, and I would not be able to recommend them.
Let us know how Jo gets on, I'm sorry to hear she is having a tough time at the moment.
Louisa