**Tamoxigang Thread 52** With virtual tea, cakes and chat for all with cancer concerns

[Lilymaid]

We were almost at our 1000 post limit for Thread 51 - hope the title is OK but wanted people to know that we aren't just about people on Tamoxifen but for all with cancer concerns!

Isee sorry that you are going through this, how worrying for you, especially on top of worrying about your mum too.
Sending good wishes to both of you and hoping your wait for some answers isn't too long.

Isee, I hope you get checked out soon. The fact it moves is a good sign. It is hard waiting.

My op was quick and easy, just period type pain now. Thanks for the good wishes.

I feel funny about loosing my ovaries which I wasn't expecting. I know they didn't work and were an active threat to me but having already lost my breasts I am having a bit of a femininity crisis. I never worn make up or jewellery or dresses. I am not girly. So it is odd. I shouldn't care but I do. I should get on with sucking it up.

Trice Glad to hear you are doing well. I think you can mourn the loss of a body part. I wouldn't mourn the loss of my excess body fat, but a pair of ovaries are different!

Thanks for your replies, I keep telling myself that the stats are on my side but then breaking down in tears. I have friends coming and things planned this weekend which might distract me a little but I can't stop feeling the lump and just checked my other breast and found a patch of very painful tissue which I know can't be related but...

Anyway, I truly hope that you all have a relaxing bank holiday weekend and get some respite from your worries

I will keep saying 'i'm 37, it moves a bit, it feels smoothish' ad infinitum

Trice I would also feel very sad if my ovaries were removed, even though I never want any more kids. I am not girly either but they are psychologically important. Hope that you are ok and be nice to yourself. X

I see, it is very scary not knowing. I actually felt better when I had the cancer diagnosis than when I just suspected, but then I am odd. How is your Mum?

Hi hotchoc and all! Thanks for the support, hopefully I'll hear about my appointment soon. I'm struggling to not keep checking the lump - testing how much or far it can move, seeing if it really feels smooth or not and then knowing that none of that really makes a difference!

My mum was doing well but is currently being investigated for secondary tumours I'm afraid so I'm also keeping my fingers crossed for her.

I hope your treatment is going well

Day 3 post 1st chemo (EC) and I feel nothing yet... is that strange?

Yay it's Friday :) and 2 years today since I was diagnosed which comes with lots of mixed feelings and memories

I see the waiting is horrid fingers crossed your stay here is short and sweet

Trice glad it went ok but understand about feeling the loss

Marshy sorry you're in limbo

Mrs Rhod sorry about your BIL, how did the visit go ?

Boobz hope you continue to feel well, I felt hungovery by that stage

Love to all and hope everyone has a peaceful back holiday weekend

Just lost a long reply, grrr, time for bed. Bil looked very ill today but in good spirits and hoping the new treatment will get him to his birthday in the summer. Whilst we were there his daughter was having surgery for her bowel cancer, which she has got through safely. I'm just feeling terribly sad tonight. You kind of expect that parents will eventually die but when it's siblings its different again.

I'll be having a one year since diagnosis day next week plus mammogram on Tuesday so quite a week. I'm worried the mammogram is going to really hurt, I don't feel things have settled yet since surgery and rads, still pretty tender.

Hope all recovering from chemo and surgery have an easy weekend.

Can I join? Just been diagnosed - breast.

Feels totally unreal. Had initial consultation bcs sore/red/inflamed boob but mammogram picked up something else and biopsy confirmed it's... you know. Can't say it yet!

Not eostrogen receptive, apparently. Op soon, radiotherapy and possibly chemo. I have a pack from the breast care clinic to read 'when you feel ready' (so kind!) but haven't been able to face it yet.

I just can't believe it. It was the last thing i expected (is that arrogant?). I keep thinking today was a horrid day and tomorrow I'll be back to normal/it'll all be over.

Haven't RTFT, sorry. Can't face it - which may be rather unfair, apologies.

Springy sorry that you find yourself here, you are very welcome though. You must be in shock, most of us found where you are now as the worst time when you're not sure what's going on and struggling to believe it's happened to you. If it helps I was diagnosed 2 years ago yesterday, had a year of treatment including 2 ops, chemo and rads, then back to work and now I'm back to pretty much normal. That's the experience for lots of us on here.

Please post anything, questions worries etc nothing is off limits

Springy it IS so surreal. I have just been through my first chemo session and I still don't feel like this is happening to me. The most prolific thread I was on on MN before joining these lovely ladies was the "Insanity Exercise" thread where we all shared our top workouts and our before and after photos having worked out every day on hardcore workouts for a year - I was (still am in my head!) the fittest I have ever been in my life! Body fat under 15%, can run half marathons in under 1.45 - and then... this.

What op will you be having? How much time do you have to prepare?

I have been asking LOADS of questions on here, and everyone has been so lovely and responsive even though I imagine it is repetitive for them - things like time of work/eyebrow and wig questions/nipple saving procedures/diagnosis questions (it took me 5 weeks to get my diagnosis, even going private) etc. Ask anything at all - I hope I can help now I am on my way, but I am still very much a beginner at this.

Congrats on 2 year anniversary (if that's the right thing to say? probably not) Malt - and you for your one year MrsRhod.

Iseedadpeople I hope you aren't with us for long.

Trice I understand what you mean. I think I will end up having the same op, as I feel I will test positive for the faulty gene (speaking of which - who here has managed to get the genetic testing done on NHS/BUPA and what criteria did you fill? BUPA are not covering me at the moment...)

Hotchoc - can I ask how old you are? It feels like your journey has seemed quite similar to mine so far - are you triple negative or have I confused you with someone else?

Does anyone else's port make them look like a cyborg? No low cut tops for me for a while! I'm tempted to draw some eyes and ears on it and make it look like a mouse for my kids who said the tube up into my neck looked like a tail!

Hi springy, my diagnosis was slightly similar to yours. I presented with a small lump which turned out to be fine but the mammogram picked up a different area which was cancerous. I had one operation to remove the lump and 15 sessions of radiotherapy. That all happened between May and July last year. It was a whirlwind at the time but I just wanted to show that each of us is different and treatment varies so much. I do take an oestrogen suppressor now.

None of us thought it would happen to us, I don't feel I'm in any way high risk. The usual advice to begin with is do not google too much. Stick to the main websites, Breast Cancer Care is very good, if you must. They have lovely nurses who you can call and talk to, even if you don't really know what you want to say.

Breast cancer is really an umbrella term, there are many different types, so much if what you could read will not be applicable to you so be careful. There is great experience on here of many types. I know it's terrifying but those initial stressful days and weeks do diminish. Keep talking to us, no question too trivial.

How lovely to reply - thanks.

I've woken up and... it's still here. I am frightened.

I'm not googling a single thing. I am not at all at the stage of thinking about eg nappies etc. The nurse yesterday (who took me into a room when I shouted FUCK! when consultant delivered the news) used the word 'survival'. Survival? I have not at all considered that concept. Not consciously, anyway.

I had a very shitty time in the waiting room - nearly 2 hours. That was stressful. I am a patient sort and enjoy getting a fully-sanctioned long break where I'm not expected to do anything reading but nearly 2 hours was getting a bit much re am I valued here. Turns out exhaustive updates were being posted on a screen above my head I didn't even see was there. But what tipped me right over was a woman with a toddler in the waiting room (accompanying her mother who was the patient) who was doing some very loud parenting like a show for the entire 2 hours. Insufferable. I was climbing the walls and knew i wouldn't be able to take it if it was bad news come the time.

Told my mother who told me about her brother who has just been diagnosed with an aggressive sort and wanted to talk about him. Denial queen, my mother.

I have not begun to get my head around this. I haven't opened the pack yet. It is NOT oestrogen receptive btw. Nothing discernible in lymph glands but op to take away mass [see that euphemism there] and lymph gland/s. She mentioned an expensive drug ppl sold their houses to get, back in the day, but is now available nationwide but licensed only in conjunction with chemo.

Sorry jumbly with no concrete info but it's good to talk!

*nappies? Nipples

Hi Springy. Perfectly reasonable to shout FUCK! I do it myself quite regularly. Waiting times are annoying. I always try to be super quick in my appointments because I can feel the people behind me climbing the walls. I prefer to ask my questions via email anyway as I can never remember a word that is said in the consulting room.

Sounds like you will be getting herceptin. Lots of people on here have had that, and will be able to give you their experiences.

You are having a very stressful time. I read a paper last week describing the experiences of people being told they have cancer and a lot of them were suffering from PTSD. I still get flashbacks myself.

Springy, so sorry you have had to join us. You're at a particularly tough stage right now as it's all still so new. Things will get better when you're given some dates to work towards. Might not feel that way right now but one day at a time. Your cons may have been referring to herceptin? It was once a postcode lottery drug (read somewhere it might cost £40k per year?) but is now available to anyone with primary her2+ breast cancer

ISee, I hope you are just a temporary member of the club but if you do need to stay longer we'll be here for you

Boobz, fantastic to hear you're avoiding any nasty SEs so far. After my first EC I couldn't even manage half a sandwich the first evening and then spent the night retching over the toilet! I've heard it's not uncommon to get through the first cycle relatively unscathed so it might hit a bit harder next time, but that's next time. Carry on enjoying how you're feeling this time :)

Mrs what a really tough time you're going through right now. I hope that the drs can keep you BIL well and comfortable and that his DD recovers from her surgery. And a momentous week for you next week, fingers crossed the mammo is ok

Malt congrats on your anniversary :)

Trice, I hope you're recovering physically from your op and that you're coming to terms with your emotions. Femininity shouldn't have anything to do with jewels and fancy dresses. You're a woman through and through and it's totally understandable to be having a wobble now you've had both breasts and ovaries and removed

Marshy, good to hear there's nothing serious picked up in your scan and I hope you can continue to get away with GP monitoring

Well I've just finished 15 rads, just my 5 boosters to go. Skin is pink and more sensitive and the scar/scar tissue is harder and a little sore but otherwise it's holding out well. Emotionally, I'm not doing so good. Our friend went into a hospice yesterday, I think he may literally only have days left :(. DH went to see him at home on Thursday and came out feeling devastated as our friend couldn't speak and was just a shadow of his former self. I lived with him (as a paying lodger!) for a year before DH and I married and for months after the wedding there was a long running joke about how he'd 'lived with me' longer than DH...

I've been in tears on and off most of the week, due in part to being utterly exhausted, upset for my friend and his family, coming to the end of treatment and scared of the future.... All the emotions that I know most of you have been through as well so I don't need to spell them out. I know that like you, I will get through it, it just needs time

One of my wonderful friends is visiting this afternoon and taking me out for a gentle stroll and then dinner somewhere locally so that will raise my spirits. Just wish I could enjoy a glass of wine, rads has utterly squashed my tolerance of alcohol.

Waves to anyone I've missed out and enjoy the long weekend

Minty do think about accessing some counselling. It's helped me so much to sort out the jumble of thoughts and emotions. Provided free through Macmillan by our local Relate service.

Springy hugs for you. It's a crap place to be, waiting for diagnosis and a plan. Things will move on and you will feel better than you do now. Hang on in there.

Some tough times going on. Thinking of you all.

Hello All, just a quick one before bed to welcome isee and springy, to share malt and mrs anniversaries and wish comfort and better times for everyone suffering from treatment, worries and unhappy news.
Lovely photo boobz at least you know you look good with short hair, I really hope the cold cAp works for you. I had a picc line rather than a portacath which is a thin tube inserted in the upper arm and passing through a vein to very close to the heart. It has the canula sticking out on the arm and was a nightmare to keep dry in the shower (cost a fortune in cling film) but was a godsend and never regretted having it fitted.
I'm so sorry to hear about your relations, mrs and your friend minty, you need to concentrate on your own recovery. I lost my flat mate to pancreatic cancer in the same month my chemo started - it was a really hard time.
Anybody going to watch the Sheridan Smith C Word dramatisation this week? Not sure I will find it comfortable watching.
Thank goodness it is a 3 day weekend.

Welcome Isee and springy.
Thinking of your friend/relation minty and Mrs.
Loving the hair boobz I agree how surreal this all is: right up to my diagnosis of stage 4 advanced cancer I was hitting the weights at the gym (deadlifting just over my body weight), running, power walking, eating lots of healthy home cooked meals... Cancer is indiscrimate.

Had chemo #8 on Friday. It was fine and the steroids help with the energy. Went out to visit friends yesterday, ate well, but had to return home after lunch as I was getting too tired. Once home I was fine. Something about home comforts I think. Today we're taking my 6yo to the Florence Nightingale Museum here in London. So, despite the rain, am looking forward to that. Then to hospital to disconnect my chemo pump hurrah!

It's Bank Holiday Monday tomorrow and I usually crash that day, day after chemo pump disconnect, but I have DD on my own then. She's fabulous at playing on her own so I am always able to doze and relax when she's around but I want her to go out and enjoy too so I might take her to the cinema (and doze in the seat next to her!).

What's everyone up to this weekend?

Hi Bssh,
I'm full of a cold and also feeling a bit sore having upped my exercises on advice of the physio so not doing a lot this weekend. Seeing family tomorrow. Nice to chill out today and have the house to myself so all very peaceful
Museum sounds good hope you are having a nice day.

Minty I'm so sorry to hear about your friend. :(

Boobz, I am 33. I have oestrogen positive and awaiting the HER. Yes we seem to be on a similar journey- I will have chemo, starting on Weds. Glad to hear that your side effects are non-existent so far.

I will be having a picc line in on Tuesday. My Mil bought me a waterproof cover made for casts and piccs, which will mean that I can bath and shower without worrying.

Sounds like you are doing well, BsshBosh.

Hi all

Malt and Mrs- milestones ticked off. Mrs thinking of you and your family.

Trice- hope you are recovering well. Mine will be coming out later in the year and I don't blame you for feeling that way about them going.

Welcome Isee and Springy. Hopefully your stay will be short Isee; the waiting is truely horrid though.
Springy- fuck is most definitely the word to use and surreal it definitely is. I found I could take in a bit of info at a time but was guilty of googling. Don't do it- lots of information not relevant to you and often out of date.

Boobz- hope you are still feeling relatively well. I had genetic testing through NHS due to family history and they wanted to see where my triple negative had come from. They then retested a sample of my late mums and it turned out she had the gene too.

Minty- sorry your friend is so ill.

Bssh- hope you enjoyed the museum.

Quiet weekend here but just seem very tired at the moment so probably a good thing.

Hot choc- picc line was best thing ever to stop having to have needles and veins from becoming sore.

Hi all

Hope you don't mind me joining too - v long term lurker on mn and occasional poster.

I'm a little bit further on than Springy - diagnosed about 2 weeks ago and had the op to remove the tumour last week. I'm still not sure what treatment I'll be having, as I don't find out until later this week whether the lymph nodes are clear. Mine started with a cyst that I found in March (after a failed round of IVF), which grew to the size of an orange whilst I was waiting for my appointment at the breast clinic. Thankfully, that was a cyst, but I also had a fibroadenoma on the other breast and a malignant lump on the other. Scarily, I couldn't even feel the other lumps so am so grateful for that cyst!

I have been told that whatever treatment (radio or chemo) that I'll need to be on tamoxifen, potentially for 10 years until I naturally go through the menopause, so no more IVF. DH and I have found this bit the hardest - we are still childless after 5 years trying/treatment. I know I should be grateful the cancer is treatable, but fuck - can anything else be thrown at us??

Springy - your reaction to your diagnosis made me laugh so much as I did the exact same! I wonder how many of us do shout FUCK???

ISee - good luck with your diagnosis. I really do think that's the worst bit - at least once you have the news you know what you're dealing with which is better than a black hole!

Thanks to all you lovely posters for sharing your stories so far - I'm glad I stumbled across the thread yesterday. I was having a bad day reading the news about poor Rebecca Ferdinand. The real life stories here and the positivity that you all show is amazing.