the waiting game is over and now I am scared

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21

Hi Loopylin

Thank you foryour messages of support and encouragement. What an exciting adventure you are about to embark on. Good for you. I want to run the London marathon again next year and improve my time from last year. Thats my goal at the moment then would like to do Killimanjaro. Just need to keep focused I know. Surgery on the 1st November then just take each day as it comes. Just a little scared. Do please keep me posted on your progress and wish you a speedy recovery x

Hi Hazmar, Sorry you have had to join the club nobody want to be in but is the most wonderful supported club I have ever experienced. You are right when you say the waiting is the hardest but we are all here to help each other so please talk anytime. Good luck with your op also and wish you a speedy recovery x

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Hi Sharon,

Not long now in days, but I do appreciate you have 2 more looooonnng nights to get through before your operation. We wish the very best of luck during you’re time in hospital. When you feel up to get back to us ( If you want of course) and perhaps we can share some laughs. Our regards to your family too.

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Hi cb,

Thank you for your message. Am leaving for the hospital in about 20 minutes and then it will all start. Just want to begin now.

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Hi Sharon,

So sorry that I didn’t catch you before you went in for your op, but I can feel a sense of relief in your last posting that something was at last happening. Although I was terrified when I went for my op last wednesday, the efficiency and care of the medical staff completely banished any fear I had and turned it into such a possitive experience for me. I now have to wait until the 6th november to see my consultant and plan the rest of my treatment, I feel that in the past month since I found my lump I have almost lived another life time and plunged depths and scaled heights which I did not know I was capable of . I have been deeply touched by the thoughtfullness of friends and family,the skill and care of the medical profession and the depth of sensitivity of strangers ( especialy on these forums) and I hope Sharon, that you will tap into these resources and draw on them at any time. I can’t believe how much like a "hippy ’ I’m starting to sound.Anyway loads of lov.to you. Lin xxx

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Lots of Hugs and Prayers for you Sharon -

I just happened across this chat today. Sorry also that I didn’t get to chime in before you went for surgery.

I was diagnosed in May of 2004. Biopsy surgery (july 04). Right masectomy and reconstruction surgery (August 04). Infections. Wound clinic visits (13 months worth). Chemotherapy (12-14 doses). Radiation (5 weeks, daily). Tamoxofen (2 years, approx.). Arimidex (ever since Tamoxofen ended). And countless tests and scans and such in between. We’re all alot stronger than we think. :slight_smile: I still have to do follow ups and there have been a few life changes (mostly due to my less-than-perfect reconstruction surgery, not cancer related). I’ve even had two hernia repairs (thanks to the reconstruction surgery) in 06 and 07. But… the main thing… I’M STILL HERE.

Ask a million questions, learn how your body works and what the dosages and chemical names all mean. It’s your body, you have every right to know. I think knowing and trying to understand the processes helped me be less afraid. For me, the hardest thing was to be dependant. I couldn’t change my own bandages (because i couldn’t reach them) for a while and I couldn’t lay on the bed (I slept in a reclining chair for a couple weeks) and that was inconvenient, but I lived through it.

Attitude has alot to do with healing. Try to find something positive about even the scariest things. Religion gets some people through that, but if religion isn’t your thing, use whatever motivates you. Wanting to see your kids’ weddings, or first grandchild…whatever. Keeping the mind busy with something other than dwelling on illness or fear helps.

My husband found an unthinkable ‘cure’ for me. A few weeks before my surgery, his brother was looking to buy a new home but couldn’t find one. So, my husband got online and was checking out new houses. Lo and behold, he didn’t find a house for his brother, but he found our dream home. Without telling me, he went off to see some incredible houses…he came back (as I was busy cleaning my bedroom to prepare for a long post surgery convalescence) to tell me he’d even put an offer on a house. I nearly fainted. After a long (loud) discussion he cancelled that offer, but I realize this must’ve been the real dream house because it’s not like him to do impulsive things. So, next few days, we went to see the dreamiest house ever…and I fell in love with it too. But it was his brother needing a home…so…we sold our house to his brother and we bought the dream home. Long story…but the point is, we moved NINE DAYS after my masectomy/tram flap reconstruction surgery. The time I would’ve spent worrying through all the ‘what ifs’ prior to surgery was filled with packing and sorting and preparing for the move. My dear sisterinlaw would pack a box from her house, I’d empty her stuff into the cupboards and remove my stuff and use the same box, stash the box in the garage and move on. It was hectic, but I never had a moment to just sit and whine or worry. I’m thankful for that. And once we were in the new house I had plenty of things to plan and organize to keep my mind busy for a long time.

People thought we were insane to attempt a move at such a critical point in our lives, but it turned out to be the best thing possible. It gave us a future to look forward to and kept our minds off the ‘what ifs’. Though I know most people wouldn’t do something as radical as buying a new house, anything that can occupy your hands and mind enough to avoid sitting and feeling scared or sorry is a good thing.

Best wishes with your surgery…and best dreams for your future.

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Hi loopylin,

Thank you for your message. I had the surgery yesterday and I cant tell you how relieved I feel at having started on the journey to recovery. Will be right there with you. Am in a lot of discomfort right now but it is worth it x thinking of you x

Dear RobinM,

Thank you so much for sharing your story with me. What an amazing journey you have had. Well done you and I will certainly heed your advice about focusing as It is so easy to let my mind wander right now. Going to be strong and am grateful for your thoughts and prayers. Wishing you lots of happiness

Sharon x

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Hi sharon

So pleased that you at last started on the journey with the rest of us, you sound like a different person. I can tell you I was almost elated when I came out of surgery, Knowing that the little monster had been cut out of me. Reality has, alas, kicked in and I’m now awaiting notification of the next step on Tuesday. But how can I be down when the day has been so fantastic. I’ve been out walking for 4 hours today and spotted 3 Red Kites as the sun was going down. It doesn’t get any better than that. The discomfort will soon ease and you are right, it is so worth it. I’m with you all the way, take all the help you can get over the next few weeks and enjoy the small things. all my love Linxxx

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Hi Sharon

Sorry to hear about your diagnoses but good that you have now started the road to recovery.

I was dxd with bc on the 26th October and am not due to go into hospital until the end of November. My cancer was dxd in Spain and i dont speak much spanish so u can understand the difficulties i am having. The waiting is unbearable i dont even know what type of cancer i have.

I am glad you have now started your treatment and wish you all the very best for the future.

Hugs

Lynne x x

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Sharon -

I’m amazed you’re online and sounding so much better so quickly! Lots of hugs, many smiles and prayers always!!!

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I have posted this on behalf of Sharon
Kind Regards
Sam
Moderator

Hi loopylin,

Dressings came off yesterday. Was hard to see the scars atfirst but am so grateful to the consultant and also grateful I live in the uk and have the nhs. If I had lived in a third world country I wouldnt have this chance at all so am counting all my blessings right now x Just got to wait for the results now and hoping he got enough of a margin and that the lymph nodes are clear. Wont be long to hearam sure . Hope you are feeling ok.x

Hi Lynne,

Am sorry you have had to wait for your surgery. The waiting is the hardest. I shall be thinkling of you and wishing you lots of luck for a speedy recovery. Am here if you want to talk xx

Hi RobinM

Cant keep me down for long hahaha. Its gorgeous day and would love to go for a little stroll later. Think I will see how I feel and maybe 5 minutes will be ok. Hope you are doing ok xx 21 to 30 of 30

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So good to hear you sounding so upbeat! (I think I was still ‘high’ on pain meds this shortly after surgery.) Take that (VERY) little stroll if you’re up to it. A breath of fresh air is always nice. Keep this attitude and you’ll do just fine.

Here’s hoping all the lymph come clear, but, even if they don’t (mine didn’t), don’t worry. No guarantees in life, so just keep on livin’ it. :slight_smile:

*Hugs*

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Hi Sharon

Did you get to go for you little stroll?
You sound very positive and up beat, thats definatley the way to go.
Glad the op went well.

Hugs

Lynne x x

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So glad i’ve found this site. I saw my doc on 30th Oct, was referred to hospital and was diagnosed on 1 Nov with Breast cancer. Had to go for bone, liver and chest scans Wednesday of this week (which have all come back clear!) - and go into hospital for a mastectomy next Tuesday. It has all been so fast I haven’t really had time to think about it. My family have been great - hubby in denial a bit I think, my eldest daughter who’s 21 initially broke down but she’s fine now (her father died from lung cancer when she was 9), my younger daughter is 9 and she seems to be taking it all in her stride - drew me a picture yesterday of how we would all look after my op - we are all smiling, I have one boob and a line where the other one should be - uncannily close to the truth!

But, as supportive as family & friends are, I felt like I needed to speak with people who truly understand the journey I’m about to start (because I’m not sure I do! - from reading the posts on here I think I found the right place. I work for the NHS too so I guess I’m in the right place to ask questions - it just isn’t always clear what the questions are.

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Hi All

I’ve posted this on behalf of Sharon

Regards

Katie
Moderator
Breast Cancer Care

Hi lynne,

Didnt go for a stroll in the end as it was too cold and I am trying not to put too many layers on under my arm as it is still slightly uncomfortable. Other than that am doing ok and hope that your date for your op comes round very soon for you. You know I am here if you want a chat.

Sharon x

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Sharon - keep us posted on how you’re doing. Best to you.

Magz - You hit it on the head when you said you’re not sure what this ‘journey’ entails. I’m 3 yrs post-masectomy and just found this site and am really appreciating a dialog with others who have shared that ‘journey’. (One heck of a roller-coaster ride if you ask me.) Things do move very fast. In the attempt to remove the cancer and avoid it from spreading, sometimes we have very little time to absorb what’s happening to us. What sounds reasonable when you read up on it may be quite different living through it. (In my case, tram flap reconstruction turned out to be much more invasive and life-altering than the info I’d read about it.) The masectomy surgery itself is easy enough to get through. Just remember to keep your arm stretched or the muscles will tighten up. Then, if your doc sends you for chemo, DON"T PANIC. Chemo affects everyone differently, but it’s not as awful as it was even only a few years ago. My oncologist gave me anti-nauseal drugs and steroids as part of my chemo. I had only a couple days after each treatment of feeling too weak to do much. I missed very little work (but then I have a desk job). I had a bad taste in my mouth and craved odd foods (strawberries) to get rid of the taste and I got a bit nauseous from time to time, but I never got really ‘ill’ or sick to my stomach. As much as possible, find doctors you trust, keep a positive outlook and do your best to keep living as normally. Enjoy every moment, don’t waste time feeling sorry for yourself…there’s too much to do. After my diagnosis and surgery I chose to make the most of every moment. Wear the badge of “survivor” proudly. And know that you’re not alone. There are many (TOO many) other women who have been down this path before you and are willing to support you through this.

Keep well!

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Hi Robin

Thanks for that hun My op for mastectomy and complete node clearance is tomorrow and I am now beginning to realise the enormity of it all. I am a complete wimp with hospitals - and today is the first day that I seem completely unable to concentrate on anything without bursting into tears.

Rang my BN this morning and asked her all kinds of crazy questions (and to give her her due she answered every one of them) - though she did say I ought to restrict my access to the internet lol.

I think I just can’t really believe I’ve got to this point so quickly - much as I am glad that things are progressing with such speed - as I say I feel like I’ve made decisions without really having a great deal of information, or the time to consider it. Is this normal?

Thanks you so much for the encouragement - I have been trying to be positive and it has certainly changed my outlook on what’s ‘important’ in life!

Margaret

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Hi sharon

How are you feeling? Going to hospital tommorrow for pre-op app, blood tests ect. Hope someone will be able to answer all my questions that i didnt get to ask at dxd. Taking a friend to translate and hopefully get a date for op.

Take good care of yourself

Hugs

Lynne x x x

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Hi All,
I am 59 and have been diagnosed with Invasive Ductal Cancer on the 31st October and will be admitted for surgery on 19th November. I have had a long history of breast cysts (sometimes two or three a year) which have been aspirated also a Fibro Adenoma removed about twenty years ago. I did not think the lump they found would be anything other than another cyst.
I was shell shocked when told my diagnosis after a core biopsy was performed. I will be having a lumpectomy and the surgeon said he would check about five of my lymph nodes. Does he mean removal of the lymph nodes? Questions come and go in my mind…If there is lymph node involvement, will it mean chemotherapy too? What are the side effects of Tamoxifen?
Many thanks

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Hello again ladies…

Sharon … hope you’re progressing. Ever get out for that walk?

Magz … hope your reports came out well. But ask all the questions you can.

Gillyscot… I’m amazed at how many ladies on here have mentioned invasive ductal cancer. I know quite a few BC survivors and I was the only one I knew with that diagnosis until I got to this list. amazing. (Wonder what it means though.) I’m in the States, and when they talk here about ‘checking lymph nodes’ they mean removing some. The percentage of ‘lymph involvement’ is one of the factors they look at when determining whether the patient gets chemo, or radiation or both. If none of your lymph are involved, you’ll probably be spared all that. I had (if I’m remembering correctly) 3 of 11 lymph involved and that was enough to make them send me for both chemo and radiation.

Tamoxifen is (at least here) used more as a post-cancer ‘preventative’ medicine for pre-menopausal women. Once chemo threw me into full blown menopause, I was taken off Tamoxifen and given Arimadex. But I took Tamoxifen for over a year after the chemo and radiation and had no side effects at all. One of my friends (who did not have to have chemo or radiation) is currently taking it and it is draining her energy and making her exhausted all the time. Like any medication, it affects everyone differently. There is another thread on this website where ladies are discussing tamoxifen.

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Hi Robin,
Thank you for the info. I am post menopausal so depending on results it will probably mean I wont be prescribed it. My younger sister was diagnosed last year and prescribed the drug…so I presumed I was likely to as well. On reading this forum, it is clear now that the treatment will vary from person to person depending on the diagnosis. I will have a chat with my BC Nurse on Monday morning before my admission, as I now have a list of questions. (Thankfully my sister is doing really well now)

The one thing my Surgeon said was that Invasive Ductal Cancer was one of the most common Breast Cancers diagnosed and it apparently is called such when it spreads outside the Milk Ducts.
Once again…thank you.