A need to talk

Hello Bevan
I have just joined this chat room and I immediately related to everything you said particularly the anger and the chemo brain.
I have breast cancer for the third time and will soon be having a mastectomy. I thought I was coping up to this point until the other day I became so angry I wanted to break windows and throw things. Why is this happening to me? For the first time I feel I am not coping in spite of a supportive husband and a caring family.
I don't know whether by confessing that I feel exactly the way you do is of any help to you but it did help me in a way to read your letter and realise that I am not unique.
I live in a remote rural area and there are no support groups here so my only help will be from this chat group.
People are afraid to talk about cancer and I can see immediately that they feel uncomfortable and unsure of what to say to me. So I take the bull by the horns and chat about BC in a normal way and this prompts them to ask questions.
You wonder whether the Irish are unused to talking about their feelings and since I am also not Irish I can't answer that, but as an English person I can say that it is natural for me to bury my worries and distress until it erupts. One does not want to burden ones family with constant moans about ones feelings and depression. I know this is not the ideal way to deal with it but without a support group there seems to be no alternative.

Bevan & Yang,
I'm Irish dealing with BC for a long time. It returned after 12 years, first diagnosed when I was 31. Anyway I find most people just don't want to know. So I'm determine to make the most of life that includes spoiling my little family, who know the minute they walk through the door how I am both mentally and physically despite my best effort to hide my feelings from them. We should not forget that our families want to help and be there for us. I find it a great help to live in the present moment, but to always have something planned for the future. And then again some days I take time out with a big pot of tea (only allow myself 15 minutes) to be in my sad place.

Polly

I think it is common in Ireland for people not to talk about thing.

But not everyone is the same.I am very optimistic and generally dont worry about anything.The way i see it is "Worrying wont make the problem go away"

When i had Testicular Caner i got depressed for about 2 days and then taught whats the point.If i had stayed with that attitude i would have just spent my days in bed.But instead i just got on with it and tried to have a positive attitude.

I finished the Chemo 3 months ago and i have being going back for my Check Ups and i usually forget about them its my GF that reminds me.

Life for me is back to normal after chemo.My 4th Child was born yesterday and i was delighted.It was very emotional for us.The whole way through the chemo we kept thinking when the Baby is born everything will be back to normal.

Everyone is different and everyone will react differently.But a positive attitude is half the battle.

Hi,

I'm 24 living in the US and over a year ago i was diagnosed with a rare sarcoma. Though, initially my first actions were to listen to every bit of varying medical advice that was pushed my way i decided to handle my situation a bit more radically. Without getting into deep detail, i managed to make contact with several physicians and doctors outside the US that specialize in treatments without chemo/radio, including a key german doctor known for promoting alternative therapies through dieting with foods rich in linolenic acids.

With this and a combination of other treatments i have located, i found degrees of success and managed to stave of the advancement of additional tumors forming in my body up until this past month. I had undergone some tests and received confirmation in late November of a new tumor that appeared in my chest which then likely was/is metastasizing.

I have already taken a couple rounds of chemo and i am finding it very difficult to maintain positive at all or that i will even be able to continue doing this. Though i've lived with some skin issues previously (hives/small lesions), i'm having a horrible skin dryness/flakiness which is making it tough to sleep. Pillows and sheets i sleep on are absolutely irritating and linen sheets that i thought might help some aren't really very much better. Though i had a procedure done last year where i lost some taste/smell sensation, i am finding a constant flavor of metal/iron/blood in my mouth and i can't find a thing to eat which won't utterly disgust me that will also make the taste go away.

Both my father and sister have passed away to cancer and because of this i can't stop thinking about the inevitability of it for me. Though i don't live alone, i don't really have a support system as the past months i have spent them indoors due to physical limitations imposed not only by this but by a procedure i have had done which altered me physically. Most of my friends are people i know online and i really can't find it in myself to tell them what is happening, though at times i do feel that i'm about to break down at any moment. I always felt the internet is not a place to vent such matters and to be truthfully honest, i just don't see it mattering to anyone anyway. For those that it would matter too... those that i've felt genuine love from, i've felt an obligation to shield them completely and in doing so maybe also doing myself the favor of not having to speak a certain way or use certain words that would make my spiral into further despair. I am completely coming to terms with the reality of things.

I feel the doors of my life closing. I'm not sure if anyone here has felt the 'opportunities' of life itself fleeting and escaping. I felt all these things that i wanted to know or do literally shutting down one at a time, just like doors. And I know i shouldn't be thinking this way but i just can't help it.

I don't live in Ireland, but i am part Irish. Once i am done with my treatment, i plan on visiting Dublin and a few other areas. As soon as i can feel up to it.

I guess i just wanted to know if the level of desperation i am feeling has been experienced by anyone else here. I think i just need to hear that this is how it happened to those of you still here.

[quote="mcqanita24"]Hi,

I'm 24 living in the US and over a year ago i was diagnosed with a rare sarcoma. Though, initially my first actions were to listen to every bit of varying medical advice that was pushed my way i decided to handle my situation a bit more radically. Without getting into deep detail, i managed to make contact with several physicians and doctors outside the US that specialize in treatments without chemo/radio, including a key german doctor known for promoting alternative therapies through dieting with foods rich in linolenic acids.

With this and a combination of other treatments i have located, i found degrees of success and managed to stave of the advancement of additional tumors forming in my body up until this past month. I had undergone some tests and received confirmation in late November of a new tumor that appeared in my chest which then likely was/is metastasizing.

I have already taken a couple rounds of chemo and i am finding it very difficult to maintain positive at all or that i will even be able to continue doing this. Though i've lived with some skin issues previously (hives/small lesions), i'm having a horrible skin dryness/flakiness which is making it tough to sleep. Pillows and sheets i sleep on are absolutely irritating and linen sheets that i thought might help some aren't really very much better. Though i had a procedure done last year where i lost some taste/smell sensation, i am finding a constant flavor of metal/iron/blood in my mouth and i can't find a thing to eat which won't utterly disgust me that will also make the taste go away.

Both my father and sister have passed away to cancer and because of this i can't stop thinking about the inevitability of it for me. Though i don't live alone, i don't really have a support system as the past months i have spent them indoors due to physical limitations imposed not only by this but by a procedure i have had done which altered me physically. Most of my friends are people i know online and i really can't find it in myself to tell them what is happening, though at times i do feel that i'm about to break down at any moment. I always felt the internet is not a place to vent such matters and to be truthfully honest, i just don't see it mattering to anyone anyway. For those that it would matter too... those that i've felt genuine love from, i've felt an obligation to shield them completely and in doing so maybe also doing myself the favor of not having to speak a certain way or use certain words that would make my spiral into further despair. I am completely coming to terms with the reality of things.

I feel the doors of my life closing. I'm not sure if anyone here has felt the 'opportunities' of life itself fleeting and escaping. I felt all these things that i wanted to know or do literally shutting down one at a time, just like doors. And I know i shouldn't be thinking this way but i just can't help it.

I don't live in Ireland, but i am part Irish. Once i am done with my treatment, i plan on visiting Dublin and a few other areas. As soon as i can feel up to it.

I guess i just wanted to know if the level of desperation i am feeling has been experienced by anyone else here. I think i just need to hear that this is how it happened to those of you still here.[/quote]
Hi
I can relate to how you are feeling. Im only starting this journey that I have no choice but to undertake and havent reached the desperation stage but totally get the not wanting to tell people online unless its a cancer site. I admire you doing the alternitive treatment and wish I had your courage. Im going with the docs for fear of what would happen if I dont. How are things with you now. I do hope you are feeling a bit more positive but I know the chemo can put even the most upbeat people right down. Im dreading it myself.Anyway Ive said a little prayer for you and hope you keep on here even if its only to cry online hich Im very sure I will be doing a lot of!!
Best wishes to you.

Hello people I have just joined today and would like to say I have read a few of your posts and I can relate to all of them. I had breast cancer 5 years ago and I went through every emotion there was. I probably invented some new emotions going through that, Talking about anger I threw my frying pan across the kitchen, I kicked a hole through my bedroom door. I cried a river, and through the chemo I would not answer the phone, one time I was expecting a call from my daughter and when I answered the phone it was my sister (who is a nurse in England) and I said I didnt know what to say she said dont say anything that it was just good to be able to talk to me and tell me its normal to feel low during this time. I have since joined the peer to peer volunteer group, and have gone on to study counselling but let me tell you I cried over the least little thing but I went through an early menapause so it was hormones too but I still get very emotional about things which I think is ok. I also have a new outlook on life..... I dont run around after my family any more I leave a lot of stuff for them to do (LIKE HOOVERING) HEY LIFE IS FOR LIVING

hello, i'm going through cervical cancer at the moment and i'm so angry its scary. Is it normal to be this angry - i had a terrible weekend - very emotional, crying for no reason and then crying with temper when things were not going the way i wanted them. i'm angry at everyone and everything and i feel that no one gives a damn - after the initial diagnosis everone was around me but now a few weeks on i think people are bored with it and have moved on and gone back to their own lives as if the cancer has dissappeared or something.

Elle when you have been diagnosed with cancer it's allright to get angry and emotional. I was diagnosed in February 2008 with stomach cancer and went into a deep depression, actually said the words "My life is over" I got SO ANGRY WITH GOD. I cried a few times and on more than a few occasions sought my comfort from the contents of a whisky bottle. Then after a meeting with an oncology nurse I started to come up out of the depression and became sooooo determined that I would fight back and win. Well after chemo, surgery and more chemo was told in December 2008 that I was cured - a word Oncologists don't often use. You can imagine my utter despair when in August 2010 I was told that it had come back very quietly but very aggressively into my liver. I felt angry and down for a while but again came up and again am determined to fight and win. Had 24 weeks of chemo and now on herceptin every 3rd week (1st person in NI to receive herceptin who has not had breast cancer). So hopefully you will soon get the strength to get over your anger and start fighting back. however remember you will have the odd down day and that's totally OK but after a down day mentally get up, dust yourself down and keep going. Elle is there no one to whom you can relate and share or even a local support group? Keep in touch on here.

hi frank, i dont think i would be able to talk to anyone, the words just wont come to me, i cannot put it into words how i feel. maybe in a few days i'll be able to see through the fog thats in my head.

Hi Elle

Why not try and sit down and just write what comes into your head. That might help you. I started off doing that though never finished it but I did help a bit. Of course you have a fog in your head and of couse you are angry, being told that you have cancer is akin to the psychological effect of getting hit between the eyes with a sledgehammer ! ! If the notion so takes you just sit down and have a good cry and if you are angry rant and rave and curse and swear. Though doing a daffodil and puting a hole in the bedroon door might be a tad expensive ! ! ! For what it's worth, before this day is out I will have lit a candle and will have said a prayer for you.

Frank

hi frank, thank you. thats all i need is someone who knows what its like and for someone to tell me i can rant and rave and be angry. my family think i'm ungrateful by being like this and that " i should be happy i'm not as bad as other people" i dont think it matters if your stage 1 or stage 4, the fear is still there and the uncertainty of the future. thank you for lighting the candle frank!!!

Elle " i should be happy i'm not as bad as other people" I don’t want to disparage you family but I find that an amazing statement ! ! What do they want you to have – a double mastectomy, a hysterectomy and half your bowel removed ? ? ? I suppose you are lucky, you could have been living in Belfast during the troubles and been killed. You could have been living in Japan when the tsunami struck and been drowned ! !
Trust me, soon you will be more settled in your own mind but until then you just let your emotions flow.
When were you diagnosed and what treatment are you having/going to have? In the meantime here is a big internet hug for you ((( ))))

Frank

i was diagnose on the 3rd of june and things moved very quickly.i had a radical hysterectomy 4 weeks ago, lymphnodes and some blood vessels had to be removed too. i'm back for check up in galway on thursday to find out if i need radiotherapy. i,m in constant pain and am a grumpy bitch at the moment ( i dont do pain well).
i'm 32 and had hoped to have some more children, i've got one son who is nearly a grown man at this stage.

Elle - oops, sorry about my reference to a hysterectomy. I will be thinking about you on Thursday. I notice that you haven't mentioned chemotheraphy, has it been ruled out? Is the oncologist or your GP not giving you something to control the pain? Apart from a masochist I do not know many people who do do pain well. When I'm at the clinic and am giving a blood sample or getting the canula in and the nurse asks if I am allergic to anything I always say "Yes, pain !" lol. Sorry to hear that you are in constant pain.
As regards being a grumpy bitch you are allowed to be very grumpy at present - you are in constant pain and in having your hysterectomy that is probably playing on your mind. Don't be beating yourself up Elle because you are grumpy. You are going through a very traumatic time but hopefully you will soon start to feel better within yourself.
At least you have 1 son and I'm sure you are just like any other Irish mother - you have him spoilt lol. Is he not a support to you in these trying times?
As I said above I will be thinking about you Elle on Thursday. if you don't mind keep me posted on your progress.

Frank

hi Frank, had my check up yesterday, i,m cancer free!!! i cant believe it. the histology report said it hadnt spread beyond the cervix and i dont need any further treatment except 3 monthly checkups for a year and every 6 months after that for 5 years. It was the best news we ever got - i think your candle worked!!! i do hope, with all my heart that every thing turns out ok for you. we will keep in contact.

That's great news Elle!

Oh Elle,

I was reply to your original message (in my usual long-winded fashion!) when I noticed your update from your appointment yesterday. Congratulations, that is GOOD news indeed!!!

I was diagnosed with BC 5 years ago and I remember clearly how ANGRY I was at first. I wanted to smash something to pieces and I felt so alone - like nobody understood. And I don't think anyone can really understand unless they have also had a life threatening disease. I had hardly ever been sick a day in my life and was skipping along merrily when I was rocked to my foundations by the news that I had a disease that could quite possibly kill me. To be so suddenly hit in the face with your own mortality is a very difficult thing to cope with.

One thing that helped me HUGELY was talking to other patients. Sharing the story of my diagnosis and treatment with others helped me come to terms with it all. And it helped me relax, accept my situation and then focus on getting better. And I even managed to laugh and have some fun along the way!

Apart from having to cope with the shock of your diagnosis, your mood may also be being affected by the fact that you are suddenly without hormones. They affect many different parts of your body and its functions, not just reproduction. I'm guessing that they also removed your ovaries during your surgery? This is quite a 'whammy' for your body to cope with. Have your team mentioned hormone replacement for you at all? Or how to cope with menopausal side effects?

Delighted that you are now cancer-free.
Hugs,

Flo.

Hi Flo, i was left with my ovaries thank god - they gave me the option to hold on to them but they did warn me that if i needed radiotherapy my ovaries would be damaged anyway - but i took the chance and i'm happy now. at least i wont be thrown into the menapause. it's so true that nobody can actually know what its like until it happens to them, ( and i wouldnt wish it on my worst enemy).
even though i'm cancer free now , i think this experience will haunt me for the rest of my days.

Hi Elle,

Good decision re your ovaries, sometimes you just need to follow your gut feeling on things.

I think your experience probably will stay with you through your life. So although you may not need further treatment (TG) don't be afraid to come here to talk. Or to contact your local cancer support centre for some counselling, nice treatments, or courses. Sometimes though, it can also bring something positive to your life. It brought me closer to family and friends and has also made me appreciate what I have a lot more.

Hugs,

Flo.

we all find it hard to talk sometimes! this time last year i was told to say my goodbyes jesus f**in christ was my reaction,why me im 36 young man loves life what did i ever do ,look aat all the evil d**ks in the world why cant they get bowel cancer..I felt like that for maybe 30-40 mins but im a positive person so i turned that round and hey im still here ok it is tricky to talk and us lads find it tough as we feel people dont understand ...sometimes i look down and see my stoma and go i hate you but without havin a stoma id b dead its just vanity i suppose !!! ya my cancer is back mt tumour is growin but f it i aint goin nowhere ya at times i get down ,at times i feel so ugly, times i feel fustrated with this fight ....but realise its human nature to have these feelings and as long as you continue to b positive not for anyone else but for you ,you will be fine!!!best of luck and hope all goes well !!!!!!!!

hi everyone,
Congratulations Elle. Great news and a boast to us all as well.
Thankfully the people in this country has improved a little when talking about the big "C" My Da died from it a long time ago and I was young at the time. We were not allowed to tell anyone, which was hard. it took me years to ask why he didnt have chemo. I vowed to myself that I would not let this happen to my own children as I wanted them to be able to talk to any one about it. thought it would be easier for us all to talk about it. It has worked.
I have had some of the daffest things said to me. i had one girl tell me about how she found a lump and all she could think about was that she wouldnt be able to take her children to their football etc, how would they cope etc. it wasnt cancer and she was so happy. I was standing there after 2 operations and just started my chemo. I was so mad with how self centred she was. I couldnt take my children to their activities. Needless tjo say she never offered to take give lifts. I was told last week that having cancer would make me stronger. this is a woman who has never had an illness and I could have hit her but i was good and just smiled through gritted teeth. Oh the "there is always someone worse off than you really rattles me. liv ein my shoes for a while. Cancer is cancer and we all live in fear that it will come back. I do get tired alot and when I tild this to a girl her reply was" if that is all you have to put up with you'll be alright and it is not much! ugh ugh ugh But nearly a year later, and a hole load of daff comments I am over all the treatment and the familly are good. i have realised who my very good friends are and what a great husband, kids and immediate familly I have.
I do get really cross and angry. I have a wee cry and then get up and get on with it. thanks guys for reading and listening.
Sunflower

I know how you feel. I need someone to talk to who understands what exactly I'm going through. I have stage 4 non Hodgkin lymphoma with the main mass 13.5 cm by 10.5 cm in my mediastinum. Which in reality is bigger than my face I measured it. I also have had seven tumours in total including my right and left lung. My left lung even collapsed under the weight of the tumour. It also spread to my adrenal gland, abdomen, and surrounded by heart. I'm blessed that my oncologist ( i was treated in the uk) managed to get rid of them all after heart surgery, 6 sessions of Rchop and 3 sessions of methadraxate brain chemo for three months.

Then at my three month pet scan Friday 13th I found out its back the mediastinum mass is back. I've had another 8 different types of chemo back in Ireland, lost my hair for a second time only to find out through another pet scan that the cancer has spread to my kidney but it's ok the kidney tumour is only the size of a 50 cent piece. that should make me feel better!

I've since had 20 sessions of radiotherapy on my mediastinum mass. This Thursday I'll find out if the radiotherapy has worked or not. Im also having more chemo beam chemo ( bye bye hair again) so that I can have a stem cell transplant. I'm no where near finished and I've been actively fighting this since April 2011. I still have the worse part to go through.

So how do I feel? I'm terrified, I'm annoyed that my doctor doesn't answer my questions fully, I'm disgusted at the treatment I've received in the hospital as a private patient a dog wouldn't be treated like this. It kills me that I've no one to talk to who actually understands and can explain the frustration I feel.

Congratulations Ellie on being cancer free x

I have a rare type of Cancer and when I was first diagnosed I was so scared I refused to talk to another patient that was going through the same cancer as me which is an Osteosarcoma, it is a rare type of bone cancer. That was in May 2010 and to this day I regret that because I have met no one since with the same type of cancer as me. I know cancer is cancer etc but there is all different types of treatment available and mine was chemotherapy and radical surgery then more chemotherapy. When it came to the surgery I had a choice on saving my leg or to amputate, the amputation would have meant half my buttocks aswell as the tumour was in my left pelvis. I decided to save the leg and then I had more chemo and half ways through that I developed an abcess in my left buttocks. I was rushed to hospital as it burst and I developed septiceamia and my Kidneys nearly failed I was extremely lucky with the medical staff in Kerry General they were brilliant. I had lost so much muscle in my bad leg and I had a massive wound that took around 7 months to heal. I also had a cholostomy and food tube for months after. It took a good year to recover between physio etc. 11 months After the abcess I saw my oncologist and I was in remission and then in Feb 2011 I was diagnosed with a sarcoma in both my lungs. I only got back to work and now I was headed down another scary road of chemotherapy. Life is not really been good to me the last 3 years. But the one thing I would be lost without the help I get from my doctors from GP and my consultant, to my friends and family I would absolutely be lost without them. Good luck to everyone that is going through treatment