General Chat

unless you have lived or are living with cancer
you can never imagine the heart ache it causes

GOOD LUCK to those who have cancer
or have been fighting cancer
my heart goes out to you xxx

please be careful giving medical advice as it could be dangerous

Hiya Annie. As Puss said, it is perfectly normal. It is natural to feel lows, because cancer is such a huge fear in our lives, and then wham, what is supposed to happen to other people, happens to us. Even when we are trying to keep as positive as possible, there are times when that slips. It is facing the unknown... every little twinge and ache (bruise, nosebleed and mouth ulcers in our case, I imagine) sets that fear going again.

I have found a bit of that over the last few weeks, and counselling really has helped me. Did you look at those sites? I really feel that you need to be talking your fears and anxieties through with someone face to face.... your gP is great, as you said he has trained as a counsellor. But I also had a *cancer buddy* for a couple of weeks, through the Leukaemia society here, and she was superb, because she understood, she had AML in 2000. She has also trained as a counsellor afterwards. There is nothing quite like talking with someone who has been through the same as you.

So please contact them and see what they have to offer you that is specific to the CML.... your fears are bound to be different to mine, as your treatment is for the rest of your life, and the uncertainty about the future. (((((hugs)))))) for you.... and please ring them, now, this morning..... there was a telephone number on that site....

I am happy for you to pm me, but I am off to bed in a mo.... and I shall be answering when you are in your bed, which is a long time for you to wait. So please phone them now... you don't have to deal with this on your own, and your partner might be able to have some help as well. My hubby has been brilliant, but it has been very hard for him, as he feels so helpless, and I am sure yours must feel the same. Let me know how you get on. OK?

Love

Daff xxxxx

Go on Annie please do it we all care and you can let us know how you get on xxx

I saw my GP and he has increased the dosage slightly on the pills I take for anxieties. Have only had the increase for a few days now so haven't noticed much differrence yet, doesn't help that my body is currently fighting some type of flu virus and am having antibiotics for that.

Feels like I could start up a mini chemist with all the pills I have at home : ) My GP wants to see me again in a week or so to see how I am coping with the increase to the medication and also to talk through my worries. I will let you all know what happens once I have seen him.

My partner has been really good too. I can tell though that it does worry him a lot. He is one of those typical men who clam up rather than talk about their worries so therefore it builds up and then explodes and the gums start flapping before the brain has kicked in to control what is said. So I make him think about what he has said and apologise. Since my diagnosis I have noticed I have gotten a bit bossier with him LOL. Generally we do talk about things all the time, this usually happens when he gets home from work and we sit down and have a drink and talk about our day and various other things. I have always been a worrier for many many years and it just seems to have been amplified since diagnosis. I worry about everything.

Thank you all so very much for caring. It has really helped me to be able to talk to you all.

Love
Annie
xxxxx

Depending on the drugs you have been given for the anxiety, they'll take a little time to kick in, plus... you have a viral infection needing antibiotics. Some antibiotics have anxiety as a side effect... so they are all fighting each other just now, and anxiety is leading the field. Hopefully it'll soon run out of puff.

A cold or flu is dangerous for you, as you will know, because you will find it more difficult to fight off any subsequent infections. That is why you will be on the antibiotics, just in case.

It really sounds as though your partner needs some support as well. Even if it is just so he can flap his gums to someone he isn't going to hurt with his words.

Your natural tendency to worry is taking over at the moment, because you have so much else going on.. but I am sure that it will settle soon. It is always there with us, in the background, though, like a niggling little twitch. We just have to learn how to speak sternly to it and send it to the back of the class when it starts getting a bit above itself, where it can't bother us too much. That is the hard part, but you can do it, I am sure.

Take care, and ((((((((hugs))))))))

Love

Daff xxxx

ps.... just wondering how Marilyn is? She was due some scans around about now, I think? Thinking of you, anyway. xxxxx

This thread 'caught my eye' as my dear OH has just had a recurrence of AML and has finished the first course of 10 days injections at home and will be having a platelets transfusion at hospital tomorrow. There will be 3 courses of 10 days with a 3 week break in between each course.

Daff - reading your post about eating certain foods interested me just now - you mentioned pepper - and I assumed you meant as in ''salt and pepper" (not capsicum). OH always uses pepper on his food although I only use a little when cooking. At present he cannot bear to eat anything sweet (as you will know the chemotherapy treatment kills off the taste buds) and I am wondering if any of you kind, good people have any suggestions for offering him different types of food. Maybe it is an individual thing though.

Have made a lemon sorbet which he is enjoying and summer fruits go down well, strawberries etc. Gazpacho soup seems to be a winner, too. And Salads. But what else? We don't eat meat or poultry ( haven't done for nearly 30 years now) but do eat fish and a wide variety of vegetables.

Just felt that I could share some of my thoughts with you all today - thank you for this thread - from the wife of a patient with AML.

I send all warm best wishes to everyone on here.

Reece

Reece, the reason I had to avoid pepper (it wasn't allowed on the ward, at all) was because of the neutrophils... or lack of them. Pepper is a source of a fungus which is very dangerous to people with very low neutrophils. But you will be told that if it applies to your OH, otherwise, don't worry, and as long as he is eating a balanced diet, that is ok. Your diet looks fine... plenty of fish, is excellent, as are the salad leaves and vegetables. Fruit is very good too. If he goes severely neutropaenic they will give you a list of foods to avoid, so don't worry too much about that just now. All I can say is that whatever he fancies, that is good. Try liquidising fruits as well, if he finds it difficult to take solid food at any time. But it looks as though he is getting a very good balance, at the moment so well done you. It is not easy to tickle our taste buds at times, is it? My poor hubby would be almost crying in despair with me some days, bless him.

There may be some things in meat that he is missing out on, can't think what at the moment, but it is to do with vitamins, so see if you can have an appointment with the dietitian. There will be one attached to the clinic. Also, ask the specialist nurse if they have any dietary leaflets you can take home with you. Other than that, it looks to me as though you have it well in hand.

I have virtually no sense of smell, and what I have smells *awful* so affects the taste of that food. I am awaiting an ENT appointment to see if there was permanent damage, as I had a severe fungal sinusitis amongst other things, at the end of my last chemo..


Please feel free to PM me, anytime . It does help when you can *speak* with someone who has been through the same problems.

Love and (((((hugs)))))

Daff xxxxxx

hi reece so pleased you can chat with us and our daff , she is a legend (heard the kids say that the other day and i liked it lol) xxxxx

Hi all,

I have a dietician appt on friday 18th, will let you all know how that goes.

Also will share any info I can get from that.

Annie
xxxxx

Been reading through this thread for time to time and absorbing the added responses. Our daughter had a chemo session of 4 drugs every two weeks for Hodgkins and her last check was OK.Is now 3 years 7 months from her last chemo and although back at work she still gets very tired. She put on loads of weight due to the steroids she had to take after each session ,along with the other regime of drugs, She has been to weight watchers and lost around 3 stone but is struggling to keep it off even though she really isnt a big scoffer!.

She was though very snappy with her OH and would cry at the drop of a hat. She has been diagnosed with anxiety depression and put on what she calls her happy pills.!! Thank goodness it has lifted her back up to the girl who can cope most of the time BUT she is anxious that she may not get off the pills

That's great, Annie. xxx Did you get in touch with that organisation I gave the link to? ((((hugs)))))

Puss.... people only become legends when they have popped their clogs, lolol Wmsl!! I am sooooooooo not popping my clogs yet. ;¬)))

Love

Daff xxxx

She also had to avoid things like pepper and couldn't have crisps either cos of their E numbers and this to a girl who LURVESSSS crisps was a blow.
She also had to be careful of sunlight because she would burn easily so as she went through the summer on chemo she spent most days indoors with a cooler fan at full blast cos she has massive sweats She did get a wig but couldn't wear it cos it was to hot and uncomfortable

Edit cos i dont want keep adding as the memories come back !! She wasnt allowed red meat something like beefburgers were out . NOW she wasnt a McDonalds gal but cos she couldn't have one her thought that kept her going was she would go out for a McDonalds when she got the all clear, DID SHE?? well no when it came to it she couldn't be bothered & didnt fancy one so her OH took her out to an Italian restaurant and she had chicken instead!!

Daff xx

Hiya Shirley, I remember when she had her first *all clear* it was when I first started posting, and my brother just about to start the lead up treatment for his stem cell transplant.

The neutropaenic diet was the same as for mine. I was on it longer because my blood took a long time to start reproduducing... I used to anxiously ask every time... *Are they making babies, yet?* lol All fine, now though, and I can eat what I like, but sometimes you do think *should I?* lol

Strange... the wig lady came to see me on the ward the day my first chemo was about to be given. I could see the trolley, and was very nervous, to be honest, and in breezed this lovely lady with a suitcase full of wigs and scarves. Now, strangely enough, that is the only time I freaked... she handed me the wig I had marked in the brochure for her... and I just dropped it, I couldn't , just couldn't bear the thought of wearing a wig. I almost walked out of the hospital there and then, I was so upset. Huge swallow, and pulling of self together... and no-one had even noticed my reaction except the nurse wheeling in the chemo trolley.

So I never wore a wig. I never wore a scarf... as it was winter, I wore a bobble hat for warmth when outside. I also shaved my own hair, as my husband was dreading me losing it. Actually, I didn't mind losing the hair too much, it wasn't a huge issue for me.

I still have to be careful in the sunlight, but not like last year. And the sweats... well, I haven't had one for a good few weeks now, fingers crossed.

I am sure she will get off the pills..... she has been through so much, that'll be a doddle, as long as she takes it slowly, and doesn't go cold turkey. The anxiety is a HUGE issue in our lives... I had a mouth ulcer appear over the weekend and my first reaction? Yep.... here we go again, lol

So.... (((((((hugs))))))) all around.

Love

Daff xxxxx

omg daff its just as well you know me how about a STAR then, rem

inds one self to ask kids who's there legened xxxx

you can thump me at your meet lol xx

wmsl.... I knew what you meant, lolol!! ;¬))

Nite nite, off to bed now, still giggling!

Love

Daff xxxxx

I do get hot flushes quite regularly. I go bright red in the face and feel sooo hot. But I also get the chills quite a lot too, can sometimes take ages to warm up, if at all.

So far none of the doctors have told me that I need to stay away from certain types of foods. They only told me to stay away from grapefruit and paracetamol. I have to admit to eating some of the kids crisps when they come to stay, didn't know I should probably stay away from those : )

The weight gain, for me, feels disgusting. I hate myself and they way I look. OH and I went on a low fat diet to try and help me he lost heaps of weight and I lost 2 kg and then it went straight back on and some more uninvited weight came along a joined it. Am hoping the dietician may be of some help.

I am not sure if the increase in myy "happy pills" has had any effect yet although it has only been a week, so probably need a bit more time to gauge the effect. My OH calls them "noodle pills"

I am a cancer survivor

I had breast cancer in 1995 .......... but I was lucky

A lumpectomy followed 2 weeks later by a mastectomy and removal of 2 or 3 lymph nodes was successful in removing all the cancer cells, so I did not have to have either chemo or radiation. Nor did I have to go on Tamoxifen or any other treatment. I do have to have a mammogram every May, and will have to continue until I die (or cannot get to the clinic!).

Because I have had breast cancer, I can not go to the screening clinic, and make appointments at least 6 months ahead of time at the diagnostic clinic

I don't think that I quite realised at the time how serious it was.

The cancer was found in a screening mammogram.

My doctor sent me to the diagnostic clinic for another mammogram and ultrasound

The radiologist phoned my doctor while I was there to request his permission to refer me immediately to the specialist of his choice (a written report should have been sent to him, then I should have been called into his office etc ...... so this side-stepping saved about 2 weeks)

The surgeon saw me the following week, the cancer was so deep that it could not be felt even when she had the xray right there to tell her where to feel. At the time, operating room space was limited, and she had access to one only on a Monday morning

She scheduled me for surgery the following week ...... bumping another patient who had already been scheduled at that time slot.

I had a lumpectomy, saw her one week later, and was told that the lumpectomy had not been successful

I was offered a choice of having another larger lumpectomy, which might or might not be successful, followed by chemo and radiation, and a 60-70% chance of recurrence OR a mastectomy, probably no need for chemo or radiation, and back to my normal chance of breast cancer in the other breast, and little chance of recurrence anywhere else in my body.


Not a choice in my mind! Took me less than 30 seconds.


She scheduled me for surgery the following week, bumping someone who had already been scheduled in that time slot.


I had the screening mammogram at the end of April, and the mastectomy on June 3 ...................... only 6 weeks from start to finish


It's only on looking back that I realise how close I must have been.



My husband said that the one thing that nearly destroyed him was when his boss stopped him one day while I was still in the hospital, and asked how HE was doing. No-one else had ever thought of OH's feelings. He almost collapsed weeping in the hallway!


We're strong people, and didn't feel the need for counselling ............ something that might well have been different had I had to have chemo. But we as a family did talk a lot about our feelings, and I have always been very open about what happened ....... maybe more than some people would have liked!!


My daughter was 21 at the time ......... we did ask about counselling for her and were told there wasn't any.

One year later, she researched the topic for a term paper .......... turns out that 18 and above was considered adult, and adult children did not qualify for counselling through the Cancer Clinic. The closest she could find, searching on the internet was counselling for death of a parent. I have no idea whether that policy has since changed or not.


But in writing it all down, and talking to classmates, she realised that she had in fact rebelled at the time ...... she went out one afternoon and had a half moon, Celtic style, tattooed on her thigh!



I was part of a cancer support thread on another site for several years ................. I can't give personal insight, but I can provide a shoulder!



Some things that I did learn from others on that previous site were:-

It's OK to cry and scream ....... in fact, it's usually helpful to let those emotions out. Go into another room and scream and cry into a cushion or pillow. Or do it under the shower


Tell people close to you (partners and older children) how you feel


If you have a nasty metallic taste in your mouth while on chemo, try some pineapple ................ many people found that that helped


Listen to your body .................. if it wants to rest, rest . that's healing.




sylvia

I WAS LUCKY
WENT TO DOCTOR BECAUSE OF BREAST PAIN,
I HAD A BIRTHMARK UNDER RIGHT BREAST HE
SAID HE WANTED IT CHECKED,
THAT WAS TUESDAY FRIDAY HOSPITAL THIS WAS
PRE MAMOGRAM DAYS WELL THEY DIDNT LIKE IT
FOLLOWING WEDNESDAY WENT IN OP NEXT DAY

TOLD A ONE INCH SCAR,,,,,,,,
ENDED UP ONE SIX INCH ,,,ONE TWO INCH
SEVERAL SMALLER ONES,,,,
THE ROOT OF BIRTMARK WAS ROUND RIBCAGE UP
TO ARMPIT,

LEFT LONGER THEY WERE IN NO DOUGHT IT WOULD BE CANCEROUS,I HAVE JUST HAD A YEARLY MAMOGRAM
I WAS 28 IM NOW 61

Hi sylvia, thankyou so much for sharing your story, i know it will help others mayby watching but defitatly posting, so glad you all survived this.
Iknow what you mean about asking nearest how they feel my mum broke down and told me she couldnt watch my Sdad die she said she was weak i rearsured her she wasnt weak i told her she was scared she has been there for my Sdad and im supporting her my Sdad isnt dying but we see specialist thursday from what ive learnt through lovely people on here its probably in remission, he is turning down reconstructive surgery as he and my mum are happy just to have each other to hold xxx