Please is somebody there? I'm so scared.

Yes, there are real people here and you're not alone. It IS scary - but cancer is just a word and it sounds as if you are right at the beginning. it can be cured - if it can't be cured it doesn't mean it can't be treated. You'll feel better when you have all the facts and you know what you're facing. Mean while, be kind to yourself - take things easy and only do essential stuff. give yourself time to get over the shock ... things will get more manageable. Honestly - there is life after diagnosis. you don't have to feel alone.
Keep posting here - people are friendly - you'll get replies. Jean

Hi, Kimmie - it really is scary, and at the beginning it's the most scary thing in the world, I think. But slowly things settle into place - your other half is NOT going to disapper next week, although it sometimes feels like it. There'llo be a treatment plan, support - and maybe your partner will show strength that you didn't know was there. Everything is changing, and there are also really positive moments when you even find you gain something through this wretched illness. I felt much like you - still do, sometimes, but our lives have also been enriched.
You can't do it all alone - but you can do it together.
All the best
Pat

I have been in your husband's position myself. In between twisting and turning for an age, I saw something very large and frightening. My doctor received the results by fax before I got to the surgery, and a request to see the surgeon was put in immediately. That was scary because I thought it was needless haste. In the end, when I saw the surgeon a week later, he said he would chop out half my colon and take my appendix as well.

I had the surgery, after a colonoscopy and CT scan, where he did it by keyhole surgery, and I recovered very quickly. I had chemo as a precaution and am feeling well and happy a year later.

OK you look at the possible end of the road, but then all you need to do is to work towards the scan which will tell the surgeon what is there, and he will know how to deal with it.

You don't have to be any stronger than he is. Just share all the information, and you will be able to cope.

I know it is really frightening, and we are all here to support you. If you feel your friends are shunning you, it is because they don't know what to say. Don't worry. There will be others, mere acquaintances who have been through it and they will support you too. Even so, I didn't tell any of the neighbours until after I had had the surgery. There is a bowel cancer national group which you can find through Macmillan, and they will have a local group to you where you can get support in your own area. They are just nice people who understand what you are going through. As we do of course.

Keep coming on here and we will be here for you.

Ruth

Hi,
My dad has liver cancer and fear is a response we all had...
What age are your children? Talk to them, lean on eachother it will make them feel usful!!i wish my parents would more with me, they will be just as worried about you..

Take care of you too. x

---------------------
It's like eating an elephant one small bite at a time x
(it's my daily motto)

Talk to as many people as you can and you'll realise you're not alone. A problem shared is a problem halved as the saying goes and how true it is.

Hi - there is always somebody here on this site who can offer words of support or empathy.

Can only reiterate - surround yourself with those who love and can support you, never feel that you always have to be "strong" - have a good cry if you need to and take every offer of help, even if it means you have to swallow your pride.

I am quite new to all this myself, but there are plenty of folks on this forum who can offer practical advice.

take care and ((((HUGS)))))

Thanks for your messages.

Yes its new to us. Though I've two friends with different cancers.

My sons are 21 and 18 and the 18 year old cried himself to sleep last night. The 21 year old said nothing, didn't even speak to his Dad, but that's how he is.

We are trying to get a scan for him. We go away on holiday on Saturday for a week and are debating not going. - Seems as soon as the doctor told Trevor what was wrong he had so many symptoms.

He is seeing this as our last holiday. I was very angry and went mad with him saying that's not the attitude to have etc but whether he will listen I don't know.

I am at work now and have told him he has to go to work. His condition wont have deteriorated so drastically that he can't work from yesterday.

Will speak soon.

Kimmieto

Hello Kimmieto,

I know exactly how you feel and my heart goes out to you. It was confirmed last Thursday that my mum has lung cancer - and it is quite large. We now wait for the PET scan to see whether it has spread, but as with your husband, since finding out what it is, my mum seems to have deteriorated and is now showing lots of symptoms.

Like you, I have always been the 'strong' one, despite being the youngest of three siblings hence my mum having lived with me for the last six years .

The best advice I can give to you is to talk to a couple of people you know you can lean on, you'll find friends in the strangest of places - for me, the girls in the admin team at work have been amazing - kind, sympathetic, but not smothering. I had a really bad day yesterday and I felt as if I was going to crumble completely. I literally lay on the sofa all day crying and luckily for me, my mum slept. At 5pm, I pulled myself up and started to get the dinner ready and there was a ring at the doorbell. Alison, one of said admin girls, appeared at the door with a bunch of flowers for me. What can I say? It lifted me then as it lifts me now.

Seek solace in the things where you can be alone, yet have people close by. Someone will shine for you. Don't worry about crying when you need to - I feel so much better today for my day of tears yesterday. A little bit of strength has returned and I am going to get dressed and go into work today.

My heart aches for you - I hope you can find some consolation in knowing that there are lots of people on this site who will be thinking of you.

Hannah xxx

Hi Hannah

Well things are moving now. I phoned the hospital this morning as we were desperate to get him a CT - they phoned back and he goes on Thursday. Also a nurse who he has been 'allocated to' phoned and he has to have the camera thingy tomorrow afternoon. So hopefully knowing that things are now being done he will be a bit better.

His manager at work has said he can go through BUPA if he wants but as things are happening now I think he will leave it. He has an appointment on 13th October to see the consultant to explain the plan of action etc.

Sorry to be so detailed but it helps me to put things down like this.

Have a friend who will be my prop as long as its not 3.00 am in the morning. We are both supporting another friend who is having major breast op on 6th October. What a right lot we are!!!

Have told a colleague who sits by me in work so she will help me.

Not told my parents yet (Trevors passed away some time ago). but my 18 year old might go round this afternoon and tell them.

Better get some work done.

Speak soon. And thanks for being there.

Kimmieto

Hi Kimmieto

It is an awful and very scary time isn't it. My husband was diagnosed with bowel cancer and secondries on the liver when he was first diagnosed I felt as though the floor had just opened up and I was in free fall. Please be assured as every body else has said this isn't the end of your lives together.

Once you get all the facts and treatment starts you will both feel a lot more positive about things.and yes as you said when we found out that it as cancer every pain we where convinced was the dreaded cancer at work this proved not to be the case. We went on holiday to Spain and enjoyed ourselves and Bob will finish this bout of Chemo next week and will be having an MRI scan to see how the liver mets are doing but we are going on holiday again in a couple of weeks and plan to enjoy ourselves.

We have two sons who as I am sure like yours are where devestated by the news but you will get some normality back in your lives I promise you.

You will find a lot of help and support on this site all people want to do is be there for you, don't be afraid to cry and show your feelings you need to. I don't cry as often as I used to but believe me I was a blubbering mess to begin with

Bob was very depressed but is so much more positive now.

Feel free to email me if you wish Hope someof this helps.

Don't want to be personel but have you applied for a disibility living allowance if you are on chemo you get it almost automatically it's not means tested, this would help you financially. If you go to the thread husband bowel cancer with secondries on the liver started by triplets we have all been posting on there about the allowance hope this helps

Love
Tina
xx

I know, as to so many on here, how you are feeling. My first thread read almost the same as yours, it is just so scary and frightening and you just wish you could wake up don't you. Stay with us on here, there are so many people that can advise and help you and so much love and support, it is a wonderful place. My children are 18 and 21 also, they are both dealing with it differently too. Keep talking, it will help xxx

Not having a good day in work today. Am falling apart at the moment. Best, though, to do it before I go home. Have to be strong for everyone.

Met with my manager. She knows I am the strong one at home and is very worried about me. She is referring me to works counselling service. I only get ten days carers leave and my annual leave (15 days left til May 2009) and then its hand my notice in. I guess I could request unpaid leave. Its nice to know that after nearly 30 years they are looking after me. Guess if I see our doctor she will sign me off with stress as an option, but as we all know taking sick leave now adays counts against you, especially where I work.

Had his scan today and now have to wait. Guess thats the hardest part in some ways. Trevor went to the doctors this morning and she has given him something to help him sleep and encourage his appetite. I will make him go to work until the op. He is worried about the debts he has and how they will be paid.

Getting control now Im writing this down. Be back later.

Hi Kiemmento

I have sent you an email
Talk to the mc millan nurse about the financial issues there is enough to worry about without all that on your minds as well

I know it's a clich'e but it's true you must take care of yourself to stay strong enough to get you both through this

Love to you all
Tina
xx

Just a short message to say I am thinking about you. It is terrible enough to have cancer, but of course it impacts all areas of our lives. I hope that soon you will at least know some facts concerning exactly what you are dealing with. It's very hard to be considered the stronger one in a relationship, as you automatically have to make all the decisions and the other person can be a bit pathetic (I'm speaking from personal experience here as I too am the stronger one, even though I have the cancer!) so it's really stressful. You must indeed, as everyone is saying, look after yourself too. It sounds like you have a really high-pressure job anyway. Please keep us up-to-date with developments. xxxx Penny

Hi kimmieto,

Regarding work, look at the pages on this website dealing with work, it has some really useful information and a booklet downloadable for employers. Take heart, and remember you have to take care of yourself too.

Need to have a ramble, clear my mind a bit.

Starting the day with a lovely headache. Going away for the week tomorrow. Trevor (the sufferer) was given depression pills by the doctor yesterday. I've been making him eat a meal every night when he comes home from work.. He has a full time and part time job and I have told him he needs to keep doing them until the operation. He is not ill from the cancer, just the stress hence the depression pills, so why give up until he has to. Its important to be normal and do something, not sit and wallow.

He said he is going to see if he can sell our car back to where he works. I did tell him how stupid he will look when we are through all this, and he has to ask if he can buy it back if they've not sold it by then.

He said this morning that the reason they did the scan was so they could see where else the cancer is. He thinks now that he has it everywhere and that's why he had the scan - he's not been told this by anyone at the hospital. Can't get through to him that scans are routine tests nowadays.

Was told here in work yesterday that I will get ten days carers leave, and whats left of my annual leave and flexi, then I will have to give my notice in. Nice to know that 30 years of loyalty count for so much.

I'm now conscious of every ache and pain - got a sore bum myself (hope you're not laughing too much) probably the piles and not eating properly and wearing thong knickers too tight. Better buy myself some Bridget Jones ones whilst I still can. Other option is 'go commando' but its getting a bit cold for that.

Adam (21) doesn''t say a lot - is carrying on as normal. Chris (18) seems a bit more caring towards his dad. Chris has always been the cuddly one though I do have to drag them out of him now.

Well, that is for now. Speak soon. Kim

Hi Kimmieto

We are all here for you. This is my first time on this site but I have been where you are. You can only take one day at a time, one medical appointment at a time. We found it really useful to take a dictaphone to the meetings with our consultants and they were only too happy for us to do this as there is so much informatiion given to you that it can be really useful to play back when you get home. My husband has been in a rather delicate stage following surgery and radiotherapy (RT) so hugs have been rather limited. Once he comes off his syringe pump I am up for a long long hug :-) In the meantime make sure that you look after yourself, make sure you take some time out of your day for some you time. I have started counselling at a local hospice where my husband spent a week getting his pain management under control and they have been such a support - don't be afraid to approach them. Also make contact with your Macmillan Nurses, see you doctor if this has not already happened. They can also help with pointing you in the right direction for financiall assistance.

Big ((((((((((((((((((((((HUG)))))))))))))))))))))))) coming your way.

BFN
Elaine

We all need to sometimes and it does help clear your thoughts doesn't it? As for going commando! Get some nice warm flannel draws on girl it's bleeping freezing out! And as for thongs - darned uncomfortable at the best of times, might as well do the commando thing and wear a kilt too just to prove a point :-))

Ditto what Elaine has said and get onto your MacMillan nurse, or find who she is first and call her, they are great at advising all sorts of things including financial support and benefits and the whole general support of how you are both coping and things to help you cope. We met our nurse for the first time today, when she phoned to introduce herself on Tuesday I ended up in tears on the phone and feeling really stupid - we'd had a bad night, I was tired and very low and she introduced herself as the community nurse from St. Catherines Hospice and she'd been asked to get in touch. Well to me the hospice is the place that looks after you when there is no recovery possible, it just hit me and I thought I must have missed something vital somewhere. Turns out that they are based there and co-ordinate everything at the hospice as that is the best way for this area. Wish I had known that in advance, my dear husband did and hadn't thought to tell me - there again with all that is going on I can't blame him, but it would have been nice to be warned.

I feel for you having three men to deal with in this, you'd better keep in touch with us. Ooops, here's mine now, gotta go, speak again soon xxxx

as is the complementary therapy suite. I was really sick as the proverbial parrot when I had to go to the hospice for the first time for aromatherapy. It is not some lovely old house in delightful gardens looking onto fields and trees, but on the same site as the hospital where I had been told about my mis-diagnosis. I had a friend come with me. The atmosphere - apart from the fact that I had been warned that on that particular day of the week there would be someone playing an electric organ (I'm a Radio 3 fan LOL) - was completely different from the hospital buildings close by.
I think it was unfortunate the way your nurse introduced herself, and no wonder you had a shock - but I would say to anyone not to be put off going for therapies just because of the word 'hospice'. Day care and complementary therapies are quite a separate issue from other hospice functions, and there is unlikely to be anything to upset you. The atmosphere is actually much less regimented than a hospital. xxxx Penny

I've been chatting to others on their threads and now its time to update mine.

How do I really feel? Numb still - a bit. Confused - not now - I'm a fact gatherer and find that once I have all the 'ins and outs' I feel much better about things. Less worried for some reason - yes, because everything is in hand at the hospital. And being honest - down and a bit fed up with his (the sufferers) attitude.

This morning he got up and was really sick again (nothing to do with the cancer). Says he is worried about the operation (two to three hours). He believes he IS GOING TO DIE DURING IT so won't want it. He knows the alternative but would rather 'take his chances' than have the op.

Then there's the biopsy which he had when he had the endoscopy - he wants to know the results - can't make any decisions about anything (life or death) until he has them. I don't actually see why they are relevant at all considering he's had a barium enema, an endoscopy and a scan.

Then he says that the hospital are lying to him, they are telling me everything but I'm not telling him. Apparently I know everything about it.

Ooopppsss - sorry got to go to work.

Hi Kimmieto, Im so sorry you find your self in this position. Regarding work, there are ways around it. Play the stress and depression card. Even though it is not you that actually has cancer, the effects of your husbands illness can have a serious effect on your emotional health. Get your doctor to sign you off on the sick with stress and depression. Most companys run a mile the minute you mention stress and it will buy you some more time to sort your head. Before i was ill i was the manager of a large Optics company, while i was there we had a case where a lady was caring for her Mother. I advised her to see her Doctor and he signed her off for 6 Months. Because she had long service she was on full pay for the entire time. Also when your sick pay runs out you can apply for incapacity benefit. Depression brought on by stress IS AN ILLNESS TOO! Dont be afraid to lay it on thick, Im sure you work very hard and have made your company a lot of money over the years. Let them look after you now!

I am really struggling to care at the moment.

I am in work, so is Trevor - the bowel cancer sufferer. He has to go into hospital on Thursday for his op on Friday. He is constantly phoning me crying and saying he is scared, he can't handle this, he can't this, he can't that. Can I help him. Can I get him out of this. He knows now the only option is the operation on Friday but won't read anything, speak to anyone at the hospital about anything.

I told him its affecting me as well but all he says is no its not, it can't, its not me that's got it. he won't accept that he is putting all this pressure on me to make it right for him. When I say I can't, only he can do this he loses his temper and says I don't love him. If I loved him I would make it right.

He won't accept that I can't do anything. He has even got this mentality that if I have the op he will be OK.

I know its only three days to go before he goes into hospital but I just can't wait til then. He won't accept its affecting me.

I've even thought maybe suggesting one of us goes to a hotel until he goes into hospital. I've not said this to him but its how he is making me feel. No-one else has ever had bowel cancer and no-one will be able to cure him because the surgeon is useless apparently.

We were given a leaflet with people's stories who had come through the op and survived but he says its all a pack of lies. He won't read their stories as he doesn't believe someone can survive it. He has a second cousin who has survived 16 years after her first op but he says we are lying about her.

Sorry to go on but its difficult and I need to get these thoughts out.

Hi there. I have just been reading through your blogs and all I can say is how sorry I am for your family for this to happen. It's such a shock when given the diagnosis for the one with it and the loved ones. I am the person with cancer (malignant melanoma) but have also been a carer for my husband many years ago when he suffered with depression for 2 years. He would never accept that his depression affected EVERYONE in his family, not just him. I was working part-time, looking after our two girls and running the home as well as a Complemetary Therapy Practice and it was bloody hard work doing it on my own as well as try and keep him going! Tim At times it did feel pretty bleak and I felt I just wanted to run away from it all but at the end of the day you can't can you?
Your husband appears to have gone in to panic/denial mode and becoming totally irrational. How on Earth are you meant to make this better for him, and HOW would you having the operation help him???? Is there no one at the hospital who can speak to him and maybe try some cognitive behavioural sessions so he can understand the difference between the thoughts that are real and the ones that are not? You definatley need some support for yourself too. Speak to the nurse thats's available here to see what can be offered to both of you. I have had reason to phone the number once and spoke to a lovely person who was very helpful with her information.
I really hope that you get the help that you both need soon. Sending you lots of love and positive energy and thoughts to help you at this very difficult time and love to your husband to ease his fear of what's to come.

take care

pheonix xxx

This is getting so stressful for you. Is there anyone else on his side of the family - siblings, parents, who can wade in here to rescue this situation? He has clearly lost all sense of rationality, and is in a state of panic. Can the doctors provide him with some tranqulizers. I doubt if he is sleeping with all this buzzing round in his head, which can't be helping his sense of reality. i certainly don't think you should be trying to cope alone. Your health counts too. xxxxx

Thanks for replying.

He has no family here (he was an only child and parents long gone). The doctor gave him tranquilizers but he won't take them - he doesn't see the point it won't change anything. He seems to be sleeping better than me, from the snoring I hear when lying awake.

He even panicked this morning because he found out his operation is at a different hospital to where he saw the consultant. They both work together as one hospital here.

The irony is his cousins up North have a daughter who is 36. At 21 had her first bowel cancer op and then two more. She is getting on with life so he has a very good example of how life is after. But anything I say is like banging my head against a brick wall.

I have a friend who said she would talk to him if he would listen but he won't have it. She has had a major breast cancer op herself, and said that supporting me will help her focus on someone else, so we are looking after each other. She is so matter of fact and brave about it all.

He believes nothing anyone tells him, even the experts. He will be going into hospital Thursday for his op and a few days recovery so I will be able to have some respite even though I am at work full time it will keep me 'out of the way' and maybe the people who will have the knowledge and might be able to get through to him.

Im feeling much better today in work about things - the nearer the op the better for me in some ways.

Sorry I haven't been much of one lately. Life is sh***e at the moment. On top of Geoff my mum has been diagnosed with advanced widespread lung cancer and I won't have her for very much longer. It doesn't help that it takes abour 4 hours to get to her. I cannot believe what is happening. Is anyone out there from the Berkshire/surrey border area who would like to get together over a coffee if it can be arranged?

Sorry you are having a time of it Kimmieto. Have you managed to get any time signed off from work? I am fighting a cold at the moment and we carers have to stay on top of our game don't we. Will your husband see a counsellor? Geoff did for the first time today (well yesterday) at our local hospice. Our Macmillan nurse had to do a referall but it all happened very quickly. I am also having counselling there and finding very useful. Neither by husband nor I ask each other what has been discussed as we have both chosen to have seperate counselling at the moment. It might be worth going down the same road for your husband. Let me know how you / he gets on.

Love and hugs
Elaine xx

I am so sorry and know exactly how you must have felt. My Husband had the same experience except that he was being treated for piles and only after 2 months and going back to see another Dr did they send him for tests. And, like you, he was told it looked suspiciously like cancer and he had to have CT and MIR Scan. That was in June this year. He had to have 5 days radiotherapy (because the cancer was large - to help reduce it) followed by surgery on 3 September. After 6 weeks he is looking more like his old self and this week started the chemotherapy - 24 sessions - one per week. The first one has been ok.

The surgeon told us that the cancer had probably gone undetected for 2 years - the reason it was large.

When I was affected by cancer, I felt in control and stayed positive, but now its my partner, the man I love and I felt devastated just like you. However, having spoke with lots of people who have had bowel cancer, I know that it is very curable, and I am optimistic that this will be the case.

Be there for him as it is a major operation, and keep positive for you both. I found keeping myself busy - decorating on the run up to going to hospital helped me to keep my mind occupied and now we are focusing on planning where we would like to go for a break, when he is better.

Remember there are lots of people you can talk to to help you through this.

x Sue