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Shock of diagnosis

36 REPLIES 36
Charys
Community Champion

Re: Shock of diagnosis

HI Silvia, 

 

how you doing with side effects from your recent chemo? Had first RT today, it let surreal and odd, especially when they left the room and I was under the machine alone. So far so good, day one, only 18 more to go. I will just write a brief message today, but feel free to PM me if you'd like rather than use the forum threads to talk. If your PM isn't yet enabled you can email the moderators and ask for it to be activated. 

 

c x

Silvia Avrili
Member

Re: Shock of diagnosis

Hi Charys,
How are you? Hope you are enjoying the sunshine today. I know my cats are! I have also been out today & my brother & sister in law came round which was lovely. We talked about loads of things & even looked at my parent's wedding album which was interesting & we even saw some of each of our christening photos. So I had my second chemo session on Thursday which was good. The cold cap was ver freezing as my hair is shorter as had it cropped to try & lessen sadness of losing it completely which I kind of expect to but hope not to lose all of going forward. Anyway so cold cap was quite excruciating at first but eased abit. The nurse was so kind and caring & really made sure I was ok all the way through it. I saw the breast cancer nurse who was very calming & is going to email me next week to check how I am. She was very giving & suggested many useful things including counselling & is going to put me in contact with a counsellor who I can see next time I go there. The oncologist who is a wonderful, lovely & kind lady came to see me & listened to any questions I had & gave me answers to them which was very reassuring. She also prescribed me tablets to ease the heartburn which is apparently quite common when having chemo which also reassured me & the tablets are helping. I was also told whilst I was there that very dry skin is common & that E45 which contains lanolin is very helpful for this. I know that time flies & you are right before we know it there will summer then autumn & this year will zoom. Just right now the journey seems long. Six more chemo to go. I do feel a bit weak tired & still scared but this forum has helped. I will write again next week. I am trying to prepare for hair loss the depression & lack of appetite but I don't think I am really prepared so I will have to deal with it as it comes. You will probably get a message from me feeling sad & sorry for myself. I apologise for that now. Please let me know how you are & I will be thinking of you this ,Wednesday. Lots of luck to you xxx
Charys
Community Champion

Re: Shock of diagnosis

hi Silvia,

 

im not sure about the massage issue to be honest, I know that sometimes massage is a form of therapy offered for Bc sufferers......but I have also seem a bit of controversy about it too reading here and there.....why not ask your BC Nurse what she thinks? So, you have your chemo this coming Thursday, I think you are being incredibly brave and I'm glad you've made your list of questions ready. We need to remember that we aren't just passive recipients of treatment, we also have a right and need to know the details we want to know. 

My rads do indeed start 1 st June. I am having 19 sessions in total, 15 whole breast and 4 targeted boosters to the area of the removal of the tumour. I went today to buy a few different creams as recommended by the ladies on the May rads forum...I want to be ready for any skin eventuality lol 

Time does feel slow doesn't it.....I know what you mean.....it seems endless, but I was only thinking it was 3 rd March I went for my first visit to the GP for a check and the ball started rolling.

i don't know if you have joined a chemo thread yet, if not, then yes just add a new post on the relevant thread introduce yourself and say hi and I know they will welcome you with open arms. 

Let me know how you get on Thursday, will think of you.

 

x

 

Silvia Avrili
Member

Re: Shock of diagnosis

Hi Charys
How are you? I had a friend from work visit me today so it was lovely to see her & really nice her to come see me. I went to meet her in a coffee shop nearby to ensure I got out of the house then we came back home to chat & catch up on news. I have chemo this Thursday so am busy making a list of questions & things that I want to mention to the nurse & oncologist. I always a bit afraid to ask questions as I know they are busy but I would like the answers to my worries. Do you think it would be avoid idea to have a massage as my back feels achey & this sometimes gives me headaches. I don't know but maybe the stress is also causing the pains in my breast & areas around it. Will be sure to ask them this as well at chemo. When I read your message it reminds me that although it seems such a long time ago this nightmare started you remind me that it hasn't been that long. I just need to keep reading your responses & believe that life will be normal & that I can think about life after this journey. Your spirit, courage & words help me remember this thank you. Small steps like you said. So chemo this week lets get that done first then next step. Your rad treatment commence on 1st June doesn't it? What happens there? How many sessions will you have? Wednesday having a very short crop at hairdressers to try & lessen sadness of hair loss. I have also done small amount of work from home today so am trying to keep occupied. I am really worried I'll hit that terrible low few days that I did after my last chemo session but at least I will be a bit prepared for it. Forgive me in advance if I message you feeling very down on those days. I contacted the counselling lady & she is back next week so will email her then. She did give a mobile number but I'm not an emergency so will send her an email when she is in the office & see when I can go to see her & join a group session perhaps. To join the monthly group do you just add a post to theirs? Hope you have a good day tomorrow. Will let you know how chemo goes this week. Let me know how you are. Am
Going to make sure I go outstanding least once a day. Good advice for you thank you xxx
Charys
Community Champion

Re: Shock of diagnosis

Hiyer Silvia, 

 

im so sorry I didn't see your earlier message, somehow I missed it. It's perfectly natural to be afraid, I think you are very brave having it and I would be MUCH worse than you if I was facing it! I think it would really help you to join the monthly chemotherapy thread......the ladies on there really understand what you will go through and how you are currently feeling. You can share experiences with them as you go alone.  I have nt need to have chemo, so I definitely think they would be happy to provide you more support.

Have you made the list for your oncologist Silvia? Write down all those things worrying you, like the breast bone pain, the bad stomach and so on. Once you have made the list, put it out of your mind as best you can as there is nothing else you can do until you see the oncologist next ( remind me of the day again?) , the stress and anxiety will do you more harm than anything. I'm sure they will be able to check you or reassure you. 

Did you go to the support group the lady rang about?

Im so glad you are getting out and about, that's great...and I know it takes a lot of courage and will power to do that when you feel so low. YES, it will be possible to get back to normal, you are so early in the process right now Silvia, don't be hard on yourself and take things in small steps as you have quite a bit to get through first. Break things up into little bits, think of the first chemo session next, no further ahead at the moment.

 

Charys xx

 

Silvia Avrili
Member

Re: Shock of diagnosis

Hi Charys how are you? Had a bit of a down day today. I think I am so afraid of the chemo I am having on Thursday. I know it's silly but I am sad at the thought that I will probably lose my hair eyebrows & eyelashes as I think this normally happens on second chemo. I feel stupid because I know & I am thankful to have the chemo I just dread losing the hair. I am also afraid of the pains I feel near my breast bone & imagining all sorts of things. I am driving myself crazy. Did you do that? I feel so scared & self piteous. Today I was thinking will it ever be possible to live a normal life & wake up not be afraid of each day. Sorry to be so miserable it's just most people around me don't understand why I get so low & yet I can't help it. I did go out today though as I remember it's important to not stay in all day. Did you have a good day? We had visitors round so it was nice & of course my two cats made me smile xxx
Silvia Avrili
Member

Re: Shock of diagnosis

Hi Charys
How are you? Did you have a good day? Thank you so much for your response. I felt like I had really achieved something when you mentioned to me about having gone into work when previously I hadn't thought of it as being brace. Thank you. I did a bit of work from home today not much but a bit on the laptop & it took my mind off of things. I still have that burning sensation so am going to mention it to oncologist when I have chemo next week. I am a bit scared about it & imagining all kinds of things so better to ask about it like you said. Also I am afraid about the next chemo as I think this is when the hair loss will come which is frightening. I try not to be vain about it & even though I have had it cut short in preparation for hair loss it will still be awful to see it fall out. I know it's got to be done to get me better so I am trying to be brave about it. Anyway I know now that when I feel rough after the chemo I will be messaging you so please excuse me in advance if I trouble you next week. I will also read our past conversations as I know these will help me. Thank you so much. Going to try & sleep now. Hope you have a good day tomorrow. Silvia x
Charys
Community Champion

Re: Shock of diagnosis

Hey Silvia,

 

Well done for going into work....that was REALLY brave of you! Really... facing everyone when you are feeling so anxious and low is no mean feat, you did well girl! Dont be so self depricating, and imagine others are braver, you have taken some really big steps the last few days and weeks...be proud of yourself. Also do you know how many people find a lump and dont go get it checked because they are scared? let alone have chemo? Ill answer that for you....more than you would think according to my surgeon! So, see you have already been very strong indeed.

I've been out in the garden doing major work all day, and it has basically rained for most of the day, so I look incredibly muddy and moth-eaten right now.

I think you should mentioned the burning sensation to the team when you visit on 26th (I think you said 26th). If you suffer from anxiety, and are having chemo, then the combination of the two could give you quite nasty indigestion....maybe they can give you something to ease it after your next treatment?

 

I really do think you need to ask your breast cancer nurse about counselling, I am currently have it via a referral and its really helping.

 

Charys xx

 

 

Silvia Avrili
Member

Re: Shock of diagnosis

Hi Charys
Hope you have had a good day. Yesterday I went into my work & they were lovely to me. It was very emotional to see lots of friends & colleagues & my bosses. They were all so kind concerned & welcoming. Today I went out for a walk taking your advice which was refreshing & good to get out & about. I do still feel the aches & pains but am trying to get on with the day instead of thinking into everything. I am struggling with like a burning sensation in my tummy sometimes but hopefully this will ease. Perhaps it's an effect of stress. I can't shake this really sad feeling & am trying to remind myself of your kind wise words about the people in the supermarket & around me of whom I don't know what their situation is & not to assume I am the only victim. I am trying hard to be less self indulgent & more positive but is just tough sometimes. I am attempting to eat & keep strong as have chemo next week on 26th May. How are you? Reading over our conversation I hope to become as strong & brave as you. Silvia xxx
Silvia Avrili
Member

Re: Shock of diagnosis

Hi Jo
Thanks for your message. I think after reading your message I am going to write a list of questions on preparation for the next chemo session on 26th May as the oncologist will be there. I try not to read the Internet too much as I seem to read scarey things & then can't focus on any of the good stuff on it. I guess in time this will become easier just at present I feel pains around the breast & underneath it & panic. I get heartburn & stress which probably makes it worse. Then I hunch my body die to anxiety & I get back ache. Sorry I sound like a total moaner which really isn't me. Did you get some symptoms due to worry & anxiety? What did you do to see them please? Good to hear that you are back to your normal role of being the go to person & got everybody back I order. Makes me hopeful that I will again be the ears for those around me who need to let off steam or have a good whinge. I am going to try & remember that time & knowledge will make this easier & that means I need to patient & take things step by step. Thanks for sharing your wisdom. This forum & the amazing ladies has helped so much as have your messages. Thank you for caring. Have a good day tomorrow. Silvia xxx
Silvia Avrili
Member

Re: Shock of diagnosis

Hi Charys
How are you? Good news about the rad sessions starting soon. The sooner you can start the sooner you will have the completed. Your test to your OH made me smile. I bet he does notice it's just they don't show it. Your description of how waking up & finding its not a nightmare but bare reality was so accurate. It' is truly like a whack & then i just want to sleep it away except it won't go away. Good to hear it will pass. I have benefitted so much for your experiences because right now it's like living hell but just hearing it will improve makes me able to get through the day & ready for the tomorrow. I also had to have therapy for my phobia of surgery needles & GA a few years ago when I had to have knee surgery but to be honest it was nothing compared to all this now. Although perhaps in a bizarre way it did slightly prepare me for the cannula & port line I had to have put in last week. Apparently it makes administering the chemo easier than constantly looking for a vein. Even though I hate the bump on my chest & stitches in my neck they said it wold be better than trying to find veins throughout the chemo. I trust the doctors so took their advice & had it put in. Hearing how you got through it gives me courage. It's not the thought of not having my breast or breasts it's more the scars & surgery that scare me. It's really not a vanity thing it's just the whole visual waking up to the stitches that petrifies me. Yet when I read your message it rang so true that fundamentally I just want the disease gone so I'll take whatever I have to do to get that result. See you made me see sense again! Today I seem to have suffered a lot with pain just under the breast which has me panicking again but I am trying to remember all tests results after diagnosis were that it hadn't gone anywhere else. Did you suffer from heartburn at all? I seem to get it a lot but it could be anxiety as I am constant pent up with worry. I will mention it when I next go for chemo & perhaps they can suggest what to do to ease it. I am so scared to read about the disease as I seem to imagine lots of bad things & send myself into an emotional frenzy with it all. Perhaps I will write some questions for the oncologist who will be at the next chemo session. Did you drive yourself crazy with pains everywhere or am I a hysterical worrier? You have lots of pets! Are the dogs lovely? A snake? That's unusual & really amazing. Also bunnies & tortoises! You must be an animal lover like me. Cats are funny because they are so clever & sense emotions so well & react to how we are. My two cats have been particularly affectionate & by my side much of the time. I feel for you as its so awful when you lose a pet. It's like they are a member of your family. My OH says our two cats get treated better than him. Is your daughter close to you? It must be so lovely to have her with you when you struggle emotionally & you can lean on each other? Is she like you in character or like your OH or a mixture of you both? I am going to try & sleep now but sometimes struggle to doze off. Hope you had a good evening. Thank you for caring. Also for making me laugh with your funny tales about your day. Will message you soon. Silvia xxx
Charys
Community Champion

Re: Shock of diagnosis

Good afternoon Silvia, 

 

or or maybe you will read this late tonight, or even tomorrow morning, so change the greeting as appropriate. 

 

Today I have had an interesting day, I visited the hospital for my BC counselling and then radiotherapy pre assessement......I have been scanned, drawn on, photographed, and tattooed as necessary. It took about 40 minutes in all, and was both fascinating and surreal lying there with various people doing various things on me with my arms up above my head. Anyhow, all done now and ready to start the rad sessions on 1 st June. After that I went for a late lunch and shopping to a few out of town large stores, no sense in my time driving to the nearest hospital , about 25 minutes there, without using the time wisely to do shopping 😏 I didn't tell OH that I would be spending a couple of hours shopping afterwards and thought I'd see how long it took before he realised I wasn't home...the answer is after 2 hours of me not appearing home he messaged me lol it was just a little female test, as he never seems to notice when I'm late back from things.....

 

so, you asked quite a few questions, I'll try and answer them, but I might have to go back and read it again as I can't see your post directly below me on the page. The first thing- the morning shock- oh yes!!!!! I can entirely relate to that. That was the worst part for me in the first few days, for a fleeting moment you feel 'normal' as your mind has been able to relax overnight, then the fact that your worst nightmare is real hits you like a sledgehammer.....I remember in the early days sitting bolt upright, crying and feeling deeply panicky with a few seconds of waking up. I remember saying to OH that I just wanted to be asleep as that was the only time I felt alright, it felt like the only escape. It was as if nightmares and terrors had moved from the night to the day, as if things were back to front. Does that make sense? I woke up and in that few seconds of waking thought that the cancer must have been a nightmare, and it isn't. Then you have to go through the shock again daily, as it happens the next morning and the next. Does it get better? Yes, absolutely, yet again time and acceptance helps you move on. That doesn't happen to me now, I feel sad sometimes when I wake up , but not the same horrendous WHACK of feeling despair. It will go, I promise you.

 

THe surgery.......oh.......my.......word. I'm not squeamish but had serious issues with the surgery.  Anita could tell you what I was like about that. I was a MESS, and that's an understatement, I will see if if I can find a link for you to my thread at the time. However, if you search for 'phobia of GAs' , 'terrified of surgery' it should come up, amongst those from the loads of other people who have a fear of surgery. I had never had a GA and have a phobia of anything being injected into me, and of medications in general. So, as you can imagine, this pushed me to my limits. It took a very understanding anaethetist who spent individual time with me answering all my questions, and being incredibly supportive to make it even vaguely possible. I was certain I would die in surgery, and at one point even wrote letters to my Daughter and OH in case I wasn't ok! The breast cancer nurse arranged this meeting for me with the anaethetist. How did I cope? I reminded myself that I simply wanted to have the cancer gone and there was no other way to do it. I spent a lot of time self talking , building up my state of mind by repeating positive statements and trying to change my attitude towards the surgery and address my (often paranoid and ungrounded ) fears of it. I read a lot about what to expect from the surgery, and I read a lot from people who had been through it. I basically did some cognitive behavioural therapy on myself, retraining my thought processes and targeting some specific problems I had. It was so HARd, and took a bit of lorazepam to get me through at times lol.....but it's done and I tell you what if it as necessary I would do it again! 

 

Your interest in others will return, you are in a vulnerable, instrospective and self focused state right now, because you are feeling 'threatened'. As your heightened feelings about the threat reduce over time, you will start to reach out to others again. It will return.

 

i have two doggies, 2 bunnies, 2 tortoises and one snake at the moment. :0)))))

My beautiful young cat, who was my baby, was killed on the road last year . Cats are the funniest creatures, I d love another but to one cared to get one after losing my boy.

 

C x

 

 

 

 

Jobey68
Member

Re: Shock of diagnosis

Hi Silvia, i certainly didnt feel very brave at the time i can tell you! Time and knowlege is what gets you through,i spoke to loads of lovely ladies here and tried to get as much information about my diagnosis as i could,the more appointments you have the more your confidence in a good out come grow, ive always been the go to person in our family and i hated feeling so weak and being the one who needed the help , normal
Service has now resumed and im back in charge of them all now! 😉
Silvia Avrili
Member

Re: Shock of diagnosis

Hi Jo
Thanks for your inspirational message. Well done to you! It was lovely to hear of the way you were so positive about breast cancer & how it's treatable. You kind of gave me that hope that I need reminding of constantly as my other half would say. He tries to make sure I remember the doctors said that lots of wormen have breast cancer are treated in different ways for it then go on with their lives & live on happily. It's just good to hear that from someone who has experienced it as it makes it real. I think I am having targeted treatment with chemo & then the operation to remove the breast or breasts then perhaps radio therapy. Long road but time flies everybody keeps saying. I guess I am guilty of just wanting my normal life. Did you often feel like that? I miss being me. I was the lady who people looked to for a shoulder an ear & advice. Now I feel useless as I am often the crying wreck. I am gong to go out the door today though as I have been told this will help my state of mind. How did you manage to be so brave? I hope you are having a good day. Thank you for your message it did help me to think this can be done. It's a journey but people do it. You have showed me that. Silvia xxx
Silvia Avrili
Member

Re: Shock of diagnosis

Hi Charys
Thanks for messaging me as I imagine you are a busy lady. How are you today? Did you ever get it when you woke up in the morning & for a second forgot about the cancer & then as I do touched my short hair probably soon to fall out & remembered it's not just a terrible dream but reality? Them my heart falls & the tension & tears start. Will that ease in time do you think? I have a wonderful other half, an amazing aunt & a brother who is struggling with it all. I do have some very caring friends but sometimes I feel lonely alone despite all these lovely people in my life. I don't ever mean to sound ungrateful or horrid it just I can't help remembering they don't have the cancer. You must think I am a misery but I really am trying not to be so downcast. I have two cats who I think sense my sadness & are often following me around the house. I must admit your words about the people in the supermarket & not knowing their circumstances or future helped but it has stated in my mind & I think of it when I ge those doubts about the future. Tomorrow my other half is going into my workplace to give them my sickness certificate & he thinks I should go with him but I am scared shy & anxious about doing so. Like I said I don't do well at opening up & don't want all the questions it frightens me & makes it all so real & reminds me of how lovely my normal life was before this. I will decide on it tomorrow depending on how I brave I feel. I do know that you have helped this past week so much & your wisdom is staying with me like a friend on my shoulder thank you. How is your day going? I did pop out to the garden but it was a bit fresh out there. I am going to walk to the coffee shop later just to try & face the world instead of staying in my safe secluded surroundings. My neighbour came to see my yesterday & she was pleased to see mere downstairs as opposed to in the bedroom the week before. Little steps on a day by day basis. I learnt that from you too. The road ahead seems so long but day by day I hope to get there & to be able to look back on this as a journey. The chemo I had last week & will have on 26th May at least I know a little of what to expect next time. Although I imagine I will lose my hair eyebrows & eyelashes which is sad but has to happen. I want to live so I guess it's just a consequence of the medicine to treat me. The surgery really scares me as I am very squeamish but I will have to cross that when it comes. I just can't help the fear & terror I often feel. Did you feel like that? How did you cope? I am not very brave so this sometimes reduces to me to tears & despite wanting to be courageous I don't often manage it. People around me are so much braver & I feel guilty about not being as courageous as them. Does this make sense? Sorry to keep going on about me I am usually much less self centred I promise. I like hearing about people a lot & it was one I of the things at work that they would joke about how everybody would come to reception where I was to tell me if their troubles because I love to listen & let other people do the talking. How I miss that. Do you have pets? I noticed you said previously. They seem to help me. Good to hear your husband & daughter are really supportive & it's so nice when you know they are there for you. Hope you are having a nice afternoon. Will message you soon. Silvia xxx
Silvia Avrili
Member

Re: Shock of diagnosis

Hi Anita thanks for your response. It feels so much easier to speak to people on this forum about the terrible self piteous angry envious feelings I have because you don't judge me for them. You understand them & help me realise it's a process that I need to go through in my own time. I keep wishing that this hadn't happened but day by day it's sinking in. I wake up & know the nightmare is true & that I have to function. I read the messages on here this morning & I felt just that little bit more able to function. Thank you so much for responding to me x
Anita
Member

Re: Shock of diagnosis

Silvia if my few words have helped you I can't tell you how happy that has made me. When I was new to this & I still am really, a few words of support from others on this forum were enough to help me through my dark times & you will have them but you'll also have 'normal' days, too when you'll just go about yr life. I don't have a large family- just a brother who is very supportive but I have fantastic friends who've been with me every step of the way. Like Charys I have only told a few people as I too feel this is private & I want to be treated as I always have been not differently. So tell people you trust & who you know will be there for you. And of course us lot here going through what you are & having the same fears & worries but we'll get there. Have a lovely day whatever you're doing xx

Charys
Community Champion

Re: Shock of diagnosis

Hey Silvia,

 

i will needed to be fairly brief now, ( doggies to sort out) but will reply to your long post more fully later. I am so glad you went out yesterday, it won't be easy, but little by little as time goes on you will find the times you feel normal and better becoming longer. Nobody judges you here....you can say what you like......the ladies on the phone line don't judge either. I know you are a loner by nature and find it hard to engage with people, but I do urge you to speak with them , they are all women who have been treated for BC a long time ago. 

 

Sadly no, I don't have a large supportive family. All my husbands family are the other side of the world and I don't know them well enough to really find comfort from them, my own family consists of my parents (who are entirely tied up with my Dads MND) and my two siblings who have some serious problems going of their own with their children having long term health problems. There are no other family...apart from.... My husband and one 18 year old daughter who are simply THE BEST and they are my support and reason to fight this. You don't need many people around you in order to find strength, don't concern yourself if you don't have that yourself...I've noticed people are often very Robust when they don't have a huge support network....maybe it allows them to rely on their own resources and find quicker coping strategies as they are used to doing it. There was a lady I talked to on here who had had the most terrible few years, with more loss in her family than I could imagine anyone could deal with, yet she approached her diagnosis with fortitude and such resolve that I was in awe of her. I have actually told very few people about my diagnosis,.....only my family and a couple of friends.....that was a deliberate choice as it gives me a feeling of total normality when engaging with people without having to discuss medical things, and also it felt quite private to me. I didn't want to be defined by 'she's got breast cancer' and wanted to just be me. Different people feel differently about this and some are happy and find it better to share with everyone. 

 

Anita and I have yet to get to our 'silver lining' we are both post surgery and pre radiation therapy, we are in early days ourselves, but I believe we will get there back to the 'new normal'.  Jobey however was one of the people who I first had reply to my posts on here it was seeing her and her being a year ahead of me and still alive and kicking that made me feel comforted. Yea, breast cancer is common, they say one in 8 women will have it as some point in their lives, but do you know what, out of any cancer ( even the word makes me cringe, I wish I could apply a better word !) this really does have such a good success rate for treatment for the majority of people. stand in a supermarket queue and some of the women in that queue have had/currently have or will have the same as you! (Sadly)

 

Dont be scared of your thoughts, they are only a symptom of fear and shock. This will all get easier. The first couple of weeks when I went back into the world , every single time I was away from the eyes of others I dissolved into crying. Actually I cried behind sunglasses too when surrounded by people. It's fine, let it happen, it will pass. 

 

Charys x

 

PS.....I wasn't brief after all was I !!! :0))) it was sunny here, somewhat colder but bright and it gave me a chance to do some much needed weeding. I have a bit of menagerie going on and so the animals took some sorting out too. 

 

 

 

 

Jobey68
Member

Re: Shock of diagnosis

Hi Silvia, I had Tubular cancer,it's quite rare and fortunately a low grade type so was small and I had no spread to my nodes so my treatment once it had been removed was 3 weeks of Radiotheraphy and I'm now taking Tamoxifen for 5 years, it's a tablet to block eastrogen as this is what fed my breast cancer.

it was very hard to cope in the early days of diagnosis and I was in a real state of fear and panic, I'm lucky to have a wonderful husband who looked after me so well and got me through the worst of times as I just couldn't function, you hear the word cancer and fear the worst but for breast cancer it isn't like that,it's so treatable in the huge majority of us and you will learn this as you go along and this is what gives you the strength to get through it, I've recently had my 1st year all clear and fingers crossed look forward to many more! Xx 

Silvia Avrili
Member

Re: Shock of diagnosis

Hi Jo
Wow what an inspiration & joy to hear your brightness. Thank you so much. Just to read how you are a year on from diagnosis & feel good means I can dare to believe I may be able to get through this. At the moment I am so afraid to believe or look beyond the new few months. So reading your message was really lovely. I have a lot to get through still but day by day like you said. How did you cope? What was your treatment if you don't mind me asking? May I ask what was your breast cancer type? Sorry don't answer if you don't want to. Thanks for helping me realise that the dark negative envious thoughts about other people without this disease are ok to think & that it's normal & that I am not an evil person. I guess it was hard to hear myself as normally I am not selfish so I resented myself for being like that as well. I am learning to accept this is a process & the thoughts will lift & a lot of that is thanks to you & this forum. I am generally a bit of a loner but it felt so helpful to reach out & experience how kind people are. Thank you so much for responding. Silvia x
Silvia Avrili
Member

Re: Shock of diagnosis

Hi Anita
Thank you so much. When I read what you said about the pains & how they can manifest themselves it helped more than I can say. I was saying your text to myself a lot so when I felt these pains it made them less scarey & calmed me down. I tried to stop thinking they were cancer related. Your response made me believe perhaps I can trust what they have said so I relaxed a bit & like you said I went for a walk. How was your day? I went out & it was tough at times because I had moments of tears whilst I was out but at least I went out. Thank you so much for your kindness. X
Silvia Avrili
Member

Re: Shock of diagnosis

Hi Charys
How your words resonated in my mind today. I felt like I was listening & I mean really hearing a lot of things you said. You are do right i dont know what is going in in those people's lives & we all have bad moments in life. Please don't think I would ever wish bad on anybody I would never do that but just to think that l life gives good & bad times to all made me feel slightly less mournful & victimised. I don't mean to sound self piteous but I know you will understand what I mean. incredible for me who isn't a very trusting person yet I believe you won't judge me on what I am feeling or saying because of the messages we've shared. Somehow I trust you & that is so good to feel because I can be honest & know you will get me. Does that make sense? I don't think I realised such caring good people like you existed. You who doesn't gain anything by your kindness but gives so much purely because you care & understand. Now that has given me more than anything I could have imagined. I did go out today & spoke to people which at times was hard but I think because I felt physically better & mentally after reading your response more able & less guilty for the "why me & please don't let this be happening to me" feelings I tried hard to function. I can't help being so scared but you know how I feel so I can say that to you without feeling like I have to keep those thoughts in. Your understanding because you have been through this that it is normal to think these things & also that I can be introspective made me feel like I can feel this way & not be so terribly guilty in doing so. I still find it very difficult to think beyond the next few months but maybe that's a day by day process at the moment. Last week when I first messaged you I thought terrible dark thoughts constantly but not so much today. That's because of your kindness thank you. I still feel envious of people who don't have this disease & I wish for my old life & health I had but perhaps like you said there will be a silver lining. Today I also spoke to a lady I know about my diagnosis & she told me about her aunt who had been treated for breast cancer & I know this sounds awful but I am realising how many people are affected by this so it can happen to anybody. I am going to try & sleep soon. Hope you had a good day. Did you go out? Do you have a big supportive family? I hope you enjoyed a sunny day. Take care. Thank you my friend & I truly mean that. Silvia x
Anita
Member

Re: Shock of diagnosis

Hi Silvia - just read your thread & picked up on the bit about the pain your feeling. When I was first diagnosed I mentioned to my BC nurse that I had pain in the other breast & lower back, too & she told me this is so common with recently diagnosed people. It's not that the pains not real, as such but you start imagining all sorts of things & if your stressed & anxious pain can manifest itself in other parts of the body. If you've been told everything else is fine, believe it, relax, do something nice & hopefully the other pains will go away xx

Charys
Community Champion

Re: Shock of diagnosis

Oh and........stop the guilt......'how can anyone like you with your selfish thoughts'? I don't think you are selfish person at all, I can tell from what you write, that you think of others and care deeply for them. A diagnosis like this can make you very introspective for a time, that is all that is happening. 🙂

Charys
Community Champion

Re: Shock of diagnosis

Hi Silvia,

 

I'm so glad my words have made a difference to you.

 

have you found your breast cancer nurse number yet? They will talk to you more about the natural feelings you are having.....the anger, the pity, the misery at seeing 'healthy people'....all the things you describe won't be a surprise to someone used to dealing with people in this field. They won't be a surprise to many on here either! I spent a whole week watching others getting on with their lives and seeming to be happy, and having no concerns, then I reminded myself that for all I knew they could have awful things going on ...they could even have cancer themselves. Just as others can't physically see your diagnosis, you do not see those of other people. 

 

Im a firm believer in positive coming out of negative, that proverbial silver lining. You learn a lot about yourself and others from a life changing event like this, and come out the other side with different priorities and personality strengths. 

 

Im not sure about your pain in your back and stomach, if you have acid reflux and indigestion then that could be a cause? I presume you have mentioned these symptoms to a medic? 

 

Let me know how you get on today,

 

gotta dash for now.....but will be back later x

Jobey68
Member

Re: Shock of diagnosis

Hi Silvia, everything you are feeling is completely normal and you are not a selfish person for wishing it was someone else and not you, we all feel like that, I know I certainly did! I couldn't stand to be around people going about their happy lives, made me sick to my stomach and I had plenty of why me moments too, the good news is these feeling will pass in time, it's a process you have to let your self work though but you will come through it and begin to feel happy again, I'm a year on from diagnosis now and feel great, don't be so hard on Yourself, just try and deal with how you feel on a day to day basis and time will pass by and you will find yourself feeling brighter 😊 Xx Jo 

Silvia Avrili
Member

Re: Shock of diagnosis

Hi Charys
I can't thank you enough for your response yesterday. It's like you show me that I could allow myself to believe there could be a glimmer of hope. I don't think I could even contemplate that previously. The cancer I have is grade 2/3 invasive ductile cancer which is HER2 positive. I keep feeling pains in my back, breast & chest. I magine it's moving & it frightens me. I can't believe the scans are correct even though I pray they are & that its not gone anywhere else. It's like my head tells me bad things. Why can't I believe the doctors & why are the pains so bad? I hate the way I keep thinking "why me?" I mean I know I'm not special so have no right to be omitted from this disease but I just feel so hurt. My dad died of stomach cancer & my my had breast cancer but recovered from this. 20 years later she got lymphoma & bone cancer but I don't believe it was connected to the breast cancer. I just see all these happy people who don't have cancer & I can't help wishing I was them. Then I feel guilty for being so wallowing I self pity & I dislike who I am. I can't bear to see people because all I think is how lucky they are with their health & their lives. How can anyone like me when I have such selfish horrid thoughts? I don't feel like a good person anymore. Just consumed with self pity & anger. Will I ever be me again? Today I don't feel so sick so I am going to take your advice & look to sit outside maybe even a venture out. This morning I was thinking about what you said & I did dare to think that if I make this treatment & get better after the chemo surgery & perhaps radiotherapy then by then in a few years medicine might have found a way of stopping this disease so that it won't be as scarey as now. Thank you for giving me so many honest good thoughts to think about. I will let you know how my day goes & please don't let this be all about me as u feel guilty of that. Let me know how you are & about yourself please. If that's ok with you? Thank you for more than you could realise how much you help me. Silvia x
Charys
Community Champion

Re: Shock of diagnosis

Oh you are so welcome. I recognised the pain in the few words you wrote. 🙁 I doesn't burden me, it helps me reinforce and clarify my own thoughts. 😊

 

Silvia, I presume they ve done a biopsy, have they given you some details about your cancer type? Every person seems to have slightly different variables and such individual breast cancers. Of course there are some shared features for some people, but numbers sometimes differ this way and that. Some people do have chemo first before surgery to shrink the malignant area or reduce the possibility of any spread during surgery. I'll be honest, I have very little knowledge about that as I've not experienced it, I had surgery first and now awaiting radiotherapy and hormone treatment.

 

Obviously you have been told you are having a mastectomy, is there a date planned for this ? What chemo are you having ? Anything you could want to know from other people is here on this forum.....do a search or visit the different areas as you have been already....and you will see others have been before you or are going through it now. It's a lonely place being  told you have any type of cancer, but remember ( and I'm so sorry to hear your parents also had cancer and passed away, but I am presuming they were different kinds than yours?) BC is one of the most treatable and there are (unfortunately) many others who are sharing your plight right now, so don't feel alone. 

 

Don't struggle either or think you HAVE to try hard, infact don't try too hard, give yourself time to feel the things you are feeling now....gradually...bit by bit things  will fall into place. Be kind to yourself, look after yourself, especially  during chemo when you are physically affected ontop of the emotional issues. My sister in law said to me when I told her I was trying so hard to be strong but failing....'don't try too hard, let others take the strain and help you for a while'. That is what this forum is about, and the 'someone like me service', and the breast cancer nurse, and the helpline on this site, and the lady at the group who rang you. Use the support offered and allow yourself to feel weak if you need to. This is a 'life changer' being told something like this, for everyone, and your responses are natural. 

 

I am surprised your breast cancer nurse has nt already been in touch with you and is talking with you. Do you have a number on  your pack of information ? Often they are present when a diagnosis is given, or a discussion takes place with an oncologist, it seems this hasnt happened for you.

 

ive asked you loads of question , sorry lol. You will be braver than you think my friend, you already have been by starting chemo, and you will come to the end of this and be amazed at your strength.

 

Charys xx

Silvia Avrili
Member

Re: Shock of diagnosis

Hi Charys
I am so grateful for your kind wise words because they make sense & i am hopeful I will get there. I was even thinking about the fact that some people think there will one day soon be a cure for all cancer & that might change how I view it compared to now. I have had an email from a kind lady at a support group to call her in Monday so perhaps that will help talk. Also I will see if i can contact a breast cancer nurse as I have some information given to me but it was a blur ar the time. I will try & pop out today & instead of sitting in bed I came downstairs to have some soup. The heartburn & pains in my back & chest & breast scare me but I am hoping this is the chemo effects & anxiety combined. I keep worrying that the my have said they are giving me chemo then removal of breast but the experts believe this is correct for me as I have the oestrogen cancer so that want to kill the cells with chemo then remove the breast. I guess they know best. It's also scarey as I lost my mum & dad to cancer both more than 10 years ago so I must remember medicine has come such a long way since then. I am sorry if I seem to burden you but your responses help to clear my head which at the moment is an emtional wreak. I am very grateful to you. My next chemo is 26th may so I am trying to eat to be strong for this. Are there any foods drinks you can suggest that work for you? Survival rates are better I know & I should remember this. Believe me I am trying so hard just the struggle is uphill at present. My other half feels helpless I know & he is desperate for me to believe I will live through this. I am trying to believe as I desperately want to live & experience life & appreciate those things I took for granted. I know I will certainly enjoy my time at home & work less hours. Thank you for getting me to chat as I think I can be a loner but your kindness brought me out x
Charys
Community Champion

Re: Shock of diagnosis

Oh Silvia, 

 

I don't  feel brave either.....I was diagnosed now some weeks ago and have had my surgery and about to start radiotherapy.....so in many ways I am probably a few weeks ahead of you in terms or 'processing time'. I have cried for weeks, and sat not wanting to do anything, and been hard work for those around me....that is all understandable and part of the stages you need to go through. I remember saying to myself ' I wish I could be brave like the other people I see around me', but the fact is that courage only comes from the pain and despair you are feeling now. Shock, grieving, fear and distress....and every shade of human emotions comes into those early weeks, and they are early weeks for you right now. There is no guilt that should be attached to how any of us are feeling right now, please don't feel that way. 

Yes, people say that you do get back to 'normal' but it is a new normal. The lady who spoke to me on 'someone like me' said that she was 2 years post diagnosis and there was a 'new normal' that entered her life. That new normal wasn't necessarily negative, as she saw things with fresh eyes and felt joy in things she never did before. 

I do think it's important that before you enter being depressed that you try to start doing a few small things .....very small steps.....sit outside in the fresh air and listen to the birds, engage with nature....the rain the breeze and the sun ( if you are lucky enough to have some !!!) .

 

i would recommend also that you ask your breaSt cancer nurse to refer you for counselling, this is a service most hospitals offer and it sounds like you really need it right now.

 

I will be back later to check in on you, ok, 

 

Charys xx

Silvia Avrili
Member

Re: Shock of diagnosis

Hi Anita thank you for replying. My other half is wonderful but I am tough work & miserable I know so it's hard on him too. Just hearing from you helped because I felt I could cry & talk & write x
Silvia Avrili
Member

Re: Shock of diagnosis

Hi Charys
Thank you for your response. It did help a lot in the respect I had never thought about it like you put it. I just hear your bravery & wish I could share a tiny piece of it at the moment. I am struggling I guess as the chemo seems to have taken my appetite & I normally love my food. I feel like I can't face people not like me usually & I feel guilty for being so miserable. Do you think I will get to the point whereby my life will be normal again. I understand some things will change but just want to continue my little ordinary life again? I hope to be brave as you. Reading your response helped ver much & I keep reading it to remind me that I can get there thank you so much. I think your dad is a brave man too &!he is lucky to have a courageous kind daughter like you. I wish I could focus on the people who have lived for years after being cleared of breast cancer & from reading I see there are lots. You are right medicine has come a long way & it is still advancing. Thank you so much for your post. Please keep them coming. You have really helped where i didn't think I would reply I really wanted to when you posted for me. Thank you x
Charys
Community Champion

Re: Shock of diagnosis

Hi Silvia, me again.....

 

I so so feel for you right now, and could give you a massive hug if I was there. We could cry together and then make a nice cup of tea and find some things to smile and laugh about. Those things are still there Silvia, all the reason to be glad and happy, it's just right now you are under a blanket of despair.

 

Something that helped me a few weeks ago, related to this whole 'diagnosis' thing. We hear the 'C' word and that terrifies us, and then people start talking graphs and expectancies of being free of 'C' in the coming years. This is a really nasty situation to be in, and is an affront to the natural human spirit of survival. So, I started thinking about it......my surgeon was saying things similar to yours that they would 'sort it' and 'it'd be fine'......if I made up a survival graph for anyone else who didn't have a diagnosis then what would that be like. My neighbour, or the woman in the supermarket who had diabetes and was obese with asthma....or even the postman or the cyclist going through town or the old man on the corner who keeps going up that ladder!...what would those be like, their expectancies? It could be that any one of them had a much worse chance of being struck with an illness or having an accident ( not that I wish it on anyone you understand) in the near future. None of us know what is around the corner? what I am saying is that it is having a diagnosis that causes the anguish....it starts you focusing on things you really don't want to. However, those without a diagnosis are obvious to the risks to their health and therefore feel 'safe'. 

Another example......my Dad in his 70s was diagnosed with Motor Neurone Disease. He had a dreaded diagnosis, and lots of people asked about his prognosis and asked directly 'how long he had'. It was deeply distressing. 9 years later and he is still alive and some of those who asked about his prognosis have passed on.

YOU have every chance of having a long and happy life, especially as your cancer was noticed and treated! You went to get checked, and now they will keep a very good eye on you in the future. Look on this board Silvia, there are many women here who haven't  just got primary BC, but have been living with secondaries for years and years . Treatments have changed, things are better than ever before for those who are diagnosed. 

 

charys x

Anita
Member

Re: Shock of diagnosis

Hi Silvia so sorry you're feeling like this at the moment. Have you got family or friends around. I've found particularly close friends very helpful while going through this. But if you haven't we are all here for you. You will get through this, you're just having a tough time of it at the moment. Anita xx

Silvia Avrili
Member

Re: Shock of diagnosis

Thank you so much for replying I am more grateful than you can imagine. I am just so scared & even though the doctors have said I won't die if this it's so hard to believe this truly. I am having 8 rounds of chemo then total removal of breast perhaps both. I can't even breathe sometimes & I feel pain everywhere. I will look at chemo threads & your suggestions. I just want to be able to live through this. Thank you it helped to read your response. X
Charys
Community Champion

Re: Shock of diagnosis

Hi Silvia,

 

I am the same age as you exactly, and was also diagnosed recently. You sound so unhappy, and I wanted to reply to you and let you there are others feeling the same way as you and who understand. You've not mentioned much about your actual diagnosis, so I don't know if you have had chemo after surgery or not? I really think it might help to call the helpline number at the top of this website, or even sign up for the 'someone like me' service.....you can email them from a link also somewhere on the front page of the website....and they find someone to call you to talk through your current feelings. 

 

Not feeling hungry and just sitting around is part of the shock, you can and will come through it....and feeling unwell from the chemo can't help either. I lost nearly a stone in the few weeks leading up to and after diagnosis. Read on here, and use this as a safe place where you can tell people about your feelings and share them. There are also 'chemo threads' where you can relate to others in a similar position. 

 

take care and stick with us here, so many understand 

x

 

 

Silvia Avrili
Member

Shock of diagnosis

Hi
I am 47 & recently diagnosed with breast cancer & in lymph nodes. I have had first round of chemo therapy & am at home recovering. I just feel so depressed & frightened. I'm not hungry & just sit I bed which is not like me but I can't help it. X