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Diagnosed and struggling

21 REPLIES 21
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Re: Diagnosed and struggling

Excellent! Outdoors activity and then getting rosy with pizza and wine. With your other half. Enjoy! X

Member

Re: Diagnosed and struggling

Sounds like not a bad place to be. Enjoy your cider and music combo! I hope it’s the aspirin and it works too x 
I gather from what I’ve read, that post-treatment, with everything you go through and facing ‘normal’ routines again with everyone’s expectations can be a very rough time, so sounds good to be part of something beneficial like a trial. I’m weighing up whether to have a glass of wine and a pizza with my other half and feeling like I shouldn’t, but then thinking what the hell, I’ve got to get through this wait one way or another. Ran up the hill (in wellies) outside our house 3 times earlier, just to get rid of the nervous energy. Must have looked like a mad woman but not bothered. No other plans other than intermittent panic and a bit of mindfulness (as  much as that can be achieved with a 2.5 year old) 

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Re: Diagnosed and struggling

I am doing well thanks. I am on the train coming back from seeing the research nurse. I am taking part in a trial, addaspirin, whereby it is being tested if aspirin lowers the re-occurrence rate in people like me. It is double blind so I don't know what I am taking. I hope it is aspirin and that it is helpful. I like there being an extra check-in on me. Quite enjoy the train ride, brought a nice cider with me (I didn't give up alcohol) and listening to music. Its Friday! Have you anything planned for the weekend?

Member

Re: Diagnosed and struggling

Thanks Wahini. I’m certainly going to do that. How are you doing? X

Member

Re: Diagnosed and struggling

What I started doing is, every morning before I do anything else I write three pages in a note book. This is mostly in bed before I get up and I write about anything that comes to mind. Dreams, rants, worries, whatever. It is not about writing a memoir or something, it does not have to be well written. Just let it flow. I find it helps clearing my mind.

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Re: Diagnosed and struggling

Thanks so much Debelina x 
Not sure of the timing on results, but before the op on 18th, I guess. Sorry, to hear you’re facing all this too Charlie64. I wish you all the strength you need to get through your op tomorrow and the awful wait to find out what you’re facing afterwards. Good on you for seeing this as the start of some positive action to deal with it. Big hug X

Member

Re: Diagnosed and struggling

Awwwww Rizzer lots of proud thoughts from me to you.....I'm glad you got that over you today......do you need to wait long for your results x

Member

Re: Diagnosed and struggling

Hi Rizzer

Similar boat to you diagnosed 31/10 having lumpectomy & sentinel nodes operation tomorrow, scarred like you of course and the next couple of weeks of waiting for the histology report will be a nightmare as partial guesswork until there in. I'm not sure how to get through those couple of weeks!!! In a strange way I am looking forward to tomorrow as that is the start of my treatment plan lets get the cause out first and deal with the mess it's left behind (fingers crossed no mess all out) Once your mastectomy is over your treatment plan is kickstarted and your journey to beat this is well on its way. Will be thinking of you and all the others like us and remember WE ARE NOT ALONE EVER XXXXX  

Member

Re: Diagnosed and struggling

Hi rizzer

 

First of all, a non-patronising well done. Each step takes you nearer your goal - end of treatment - which seems so far in the future. There will be a lot of waiting at every stage. You get used to it.  

 

I coped with the news the way I coped with all of it - numbed out, no questions, no research, no thinking, just let them get on with what had to happen. I couldn’t change anything, could I? All I cared about was not having a panic attack and not being sick - they bent over backwards to support me with that so I just went with the flow and trusted them implicitly. I achieved what I’d have thought impossible. A year on, I have to face what I didn’t face at the time - prognosis. Well, that’s like how long that piece of string is. As my breastcare nurse said, I can be in the camp where I think ‘Yes, it’s going to come back’ or I can be in the camp where I think ‘No, it won’t come back’ OR I can think ‘Who knows?’ and just enjoy camping. So I’m aiming to enjoy camping Smiley Happy 

 

Sorry, that’s not much help to you. Make sure you take a good friend with you to take notes IF you get a bad diagnosis as it goes over your head. If you need to know facts, write your questions down. But remember, test results can be good too! And the sun on your face can’t be beaten Smiley Happy Good luck x

Member

Re: Diagnosed and struggling

Hi Jan and thank you. Got through the biopsy, which is no fun of course and now it’s just awaiting results. Walked for a bit in the sun this afternoon to help lift the spirits, but can feel the weight of waiting for results starting to build. Still, there’s nothing I can do about that. Full axillary clearance sounds like a misery, not just the initial painful recovery but the long term adaptations you make and the fear of other issues in the long term. How have you coped/did you cope with the news at the time? X

Member

Re: Diagnosed and struggling

Hi Rizzer

 

I am a king-sized wuss about all things medical, with a lifelong history of anxiety and panic disorder. I found the sentinel lymph node biopsies very different from my other biopsies - I jumped in surprise each time (3, in quick succession) despite being warned what was coming but that was all. No pain (local anaesthetic), no after effects. If you say you’re scared, a nurse will hold your hand and surprisingly that really helped me.

 

The results of the biopsies help inform the surgery - better that they are sure the sentinel node is not infected; otherwise they might remove the lymph nodes which, I can tell you, you don’t want to happen unless it’s essential. I moved from an initial consultation where I was told there was nothing to worry about to the suggestion of a partial mastectomy; to all 3 biopsies showing the sentinel node was infected; then to full axillary clearance with 19 of the 21 lymph nodes infected. Not a good picture. Yet my CT scan, my bone scan and my MRI showed no sign of spread elsewhere and I’m hoping all the treatments will have put paid to any microscopic little b***ers that might have slipped the scans.

 

This is a time of terrible uncertainty. The goalposts seem to shift every time you visit the hospital. Oddly, once the ball is rolling, although there can be long waits, you do feel you’re getting somewhere. You are in the hands of very experienced people who have your best interests at heart. You may feel less of the woman you were right now because your confidence and sense of security have taken a huge blow but you truly are not diminished- maybe you’ll feel like me and find inner resources you didn’t know you have and be surprised and proud of yourself even while you feel like a quivering wreck. We each find our own way to deal with it and we get through.

 

All the very best. I hope the biopsies show good results so you feel more positive about what lies ahead.

 

Jan x

Member

Re: Diagnosed and struggling

Hi Debelina 

 

Thanks for reaching out. It’s all just so horrid and I’m so sorry you’re going through it too. I feel like i’m trapped in a new unbearable other world where I haven’t got any control over what happens about anything. And then you realise you actually are trapped in that world, away from everyone you know and love and it makes your head spin like you might pass out. Hope is the biggy isn’t it. You just want all you can get of that. Wishing you all the best for the 19th. Sending you a hug. Please let me know how you get on once you feel well enough after the op to face posting. I’m definitely going to take some pain relief, thanks for thinking of that and I don’t know if you have any beta blockers from your GP but I know that they have helped me cope with the rising panic. Sending you much hope right back X

Member

Re: Diagnosed and struggling

Awwwww Rizzer…….sorry I have no real advice for you but I can understand your feelings...… I am having a mastectomy and my lymph nodes removed the day after you and am so petrified of the results in case I have cancer anywhere else..... when I had my core biopsy the doctor needed to take 3 but I cried and was in so much pain even with the numbing gel I could only do it twice...… the lady who was in the waiting room with me sailed through hers so it just goes to show how different we all are. Maybe you could take some pain relief prior to your bubble test.

I am not loving the uncertainty of this journey either Smiley Sad

Sending you much hope x

 

Member

Re: Diagnosed and struggling

Thanks Wahini, sending a grateful hug and another one in case you felt you needed one too, take care X

Member

Re: Diagnosed and struggling

Hi, I had two drains after surgery. One came out the following day and the other the day after and before I went back home. The surgery itself is not too bad, it is not like they are operating on vital organs. For me it was more the mental side and that is why I chose for immediate reconstruction. Waking up with a boob missing seemed too traumatic to me. Now, it is not perfect but it is something and fills the bra nicely. I have cleavage. The implant didn't have to come out before radio, but radio could have damaged the reconstruction. Luckily this hasn't happened (yet, after effects can take months). It is difficult to make all these decisions. Yes I had chemotherapy, which I found the worst of treatments. Take care of yourself, treat yourself if you can. X

Member

Re: Diagnosed and struggling

God, yes rollercoaster implies there are some highs! Thanks for telling me about your experience with the op and the results. Must feel sickening to have got that news about needing the mastectomy and the nodes. I’m 46 and not working at the moment and am looking after my 2.5 year old (although that has fallen to my husband very much since diagnosis) and my son who is 9 and has been a darling. I’m having a simple mastectomy with delayed reconstruction because -  I know everyone is different

- I didn’t feel able to contemplate what option to go for on that front at the same time as deal with the cancer. I already can’t bear to look at my left breast, and I’m guessing I’m not going to love it any more post-op. How did you find it post op? Did you need drains at home? Sorry if I’ve misunderstood, but did you then need to have all the previous reconstruction removed for another bout of surgery and the radiotherapy? Did you have Chemo in between? 

Member

Re: Diagnosed and struggling

I had a lumpectomy first when they removed four lymph nodes of which to were cancerous. This was unexpected as it hadn't shown on ultrasound. The cancer was also bigger and higher grade so I had to have the whole breast removed and all lymph nodes (29 more). Luckily these were all clean so not more bad news. Although, at first I was not going to need radiotherapy and then I did, which is not a good thing after reconstruction. The doctor said, I am so sorry you must feel like you're on a roller coaster. I said, it is more like a downhill slide. But now, a year later, I am definitely on the up.  How did I distract myself while waiting for operation? I guess I was more worried that my mother was coming to stay. Also, I kept working between surgeries. Let me know if you have any questions about the procedure and recovery. Will you be having immediate reconstruction?

Member

Re: Diagnosed and struggling

Thank you Wahini and Wonky for taking the time to respond. It feels so traumatic to be conscious doesn’t it while they’re cutting and inserting and tugging at things. I’m sorry to hear you nearly passed out during the last biopsy Wahini, I can certainly sympathise. Thank you for sharing your experience of the mastectomy. The anticipation of it is unpleasant and am wondering how to distract myself between now and the 18th without wishing my life away. How did either of you manage, and did you get further revelations after the op, that the situation was more serious than you’d thought up till then? X

Member

Re: Diagnosed and struggling

Hi Rizzer, I found the biopsies more uncomfortable than the mastectomy. I almost passed out during the last one, sweat was pouring off me. But with the mastectomy you are being put under and when you wake up it is all done. I could even shower a day later with the drains still in.  I had immediate reconstruction with implant. 

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Re: Diagnosed and struggling

.....I need to either get a manicure, or get new glasses, to contend with this tiny iPhone. So sorry Rizza. Where was I? Ah yes, it is horrendous , but chances are you will receive the very best of expertise and care in hospital. Be kind to yourself.  You are perfectly entitled to put yourself first. X

Member

Re: Diagnosed and struggling

Hello Rizza, you are facing so much. I hope others on here will join me in wishing you the very best. It is horrendous, but 

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Member

Diagnosed and struggling

Hi there,

 

I found out I had bc on 21st October. Due to have mastectomy on 18th Nov. Am having a sentinel lymph node ‘bubble’ test and biopsy on Thursday and am struggling to face it. I’m still bruised from the breast biopsies and feel pathetic as can’t even handle this bit, never mind the gruelling stage of actual treatment. 
Feel gutted that although the ultrasound and mri suggested that the lymph nodes were clear, I now realise that nothing is certain until  after the mastectomy and the subsequent histology. Just when you think you have some degree of understanding of where you are, something new and horrible seems to come up.  I guess dealing with the uncertainty of all this, as a friend said, is one of the struggles of cancer. I’m so diminished by it already I can’t imagine where or how I’m going to find the strength to keep going. Just wondering if anyone feels the same or has some words of experience that might help.