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Diagnosed breast cancer today - can someone hold my hand?

121 replies

elportodelgato · 08/07/2014 17:42

Diagnosed today, after what I thought was a fairly routine check last week. Biopsy and CT scan show cancer in one breast and has spread to nearby lymph nodes, but not anywhere else. Looking at surgery within a few weeks and then chemo etc.

I have literally no experience of this, no one in my family has gone through this. DH and I are both in bits and need to find a way to a) rearrange the holiday of a lifetime which we were due to go on in a fortnight and b) somehow tell the DC who are 3 and 6 Sad

I am veering between crying uncontrollably and being strangely calm, just need someone to talk to who has been through this, anyone please?

OP posts:
smee · 18/07/2014 09:11

Got everything crossed for you today, elporto. xxx

Waving to StillP and her nippleless breasts. Grin

Spero · 18/07/2014 09:14

Good luck op. I am sure whatever happens you have a lot of love and support around you.

ThreeBecameFour · 18/07/2014 09:20

I am not sure which area of the country you are in OP but may I recommend thehaven.org.uk they are amazing and services FREE.

ThreeBecameFour · 18/07/2014 09:21

I am so sorry you have had this news and I am sure you will have lots of support here. Thinking of you

elportodelgato · 18/07/2014 09:55

Huge thanks to everyone, both with and without nipples Wink who are thinking of me today as I have my liver MRI, it means a huge amount and you all deserve Thanks

My best mate is coming with me today which will be nice as actually I've not seen any friends since it all happened. Later today is DD2's nursery 'graduation' where I hopefully won't cry my eyes out too pitifully. I am going to go and get some sleeping tablets from the doctor today too as I can't go on only getting 3-4 hours a night.

I have also just realised it is DH's birthday tomorrow Blush arrrgh! I need to do something about a cake, think it might be a pretty rubbish birthday given the circs, but hopefully I can make it up to him next year.

OP posts:
StillProcrastinating · 18/07/2014 20:31

Quick thread hijack to wave back at you Smee :-)

Fingers still crossed for today's results Elporto.

Xx

elportodelgato · 18/07/2014 20:35

Hi there, I had my liver MRI today - it latest ages and at the end I got totally freaked out and cried a bit Sad

I am so sad. I am back to worst case scenario thinking. I have tingling / slight pain down my right side which I am sure is my liver giving up on me and I feel expectant for a terminal diagnosis. I literally have no idea how I am going to keep going for the next 4 days until we get the treatment plan on Wednesday. Nothing is distracting me any more, although I did get some sleeping pills today which I'll definitely be using to get me through the next few nights.

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hoobypickypicky · 18/07/2014 21:03

"For me the stage you are at now was the very worst time, I felt powerless, at least once treatment started I felt I was doing something."

This.

I've been there too sweetie and I won't lie, it was the hardest thing I've ever had to confront but many years on, I'm still here. Medical advances are fantastic nowadays and the care you will get will undoubtedly be fantastic (and humbling).

Your body plays cruel tricks on you when you're so lost. Ever twinge will make you fear, I know sweetie, I really, truly do, but so very, very often it's because you're so aware of your situation and think the worst of odd feelings that you wouldn't even have noticed pre-diagnosis. Remember all those times over the years you've found a bruise on an arm or leg and thought 'How the jeff did that get there?' and then thought no more about it. Sometimes you later recalled, 'Oh yeah, that's when I hit my leg on the table last week', sometimes you never recall. But they went away didn't they? They weren't a result of some serious illness just as that ache in your back was only a result of sleeping awkwardly or that tingle in the hand was just an odd, unexplained thing which happened 6 years ago and was soon forgotten about.

In my own experience this is the hardest, hellish of times. You don't have answers, you don't have a plan for treatment fully in place, but soon you will lovely. Hang in there. Take the pills to help sleep. Do what you can to distract yourself. You will feel more in control and less helpless in a short while.

Radio 4 and World Service were my saviours during those days when sleep wouldn't come. They distracted a little bit without being so intrusive or loud as to disrupt all chance of drifting off.

You'll find offers of help abound. Please, please, please take them. I wish I'd taken more, I wish I'd not tried to soldier on and thought it rude or grabby to accept offers of help, be that from the mums at school or friends and family. It will be so much easier if you do accept them and people care. They want to help. It helps them. They would rather help than feel bloody useless and know you're struggling. Trust me.

You don't need to mention the C-word to the children. I didn't. I just said I was poorly and needed the doctors to make me better. Unfortunately my ex told the DC and although I was (and still am) furious with him they coped. I'm blessed with having wonderful parents who helped with my DC, took them on holiday while I went into hospital and kept things steady for them. If your or DH's family might be able to assist in this sort of way ask them, they may not have thought of it, they may not want to ask for fear of making you feel that they're interfering. They don't know unless you tell them. Likewise others and any other kind of help. Ask.

Lean on your breast care nurses for support and advice too. You'll doubtless already be finding them fantastic and they'll in my experience go to the end of the earth for you.

And keep posting. We're here. We care.

Hooby xxx

EasyToEatTiger · 18/07/2014 21:12

You poor poor thing. It's like going to a really, really bad fortune teller, I found. They barrage you with tests for everything they can think of. I haven't read the whole thread but I'm sure you already know NOT TO GOOGLE THINGS!

There are lots of places to treat yourself while you are going through treatment, and there may be a younger woman's support group. I was 39 when I was diagnosed. I hope you have an excellent team looking after you.

Yes it's awful and it's scary. There are so many other women out there in the same position. Big MN hugs ((((((())))))))

elportodelgato · 18/07/2014 21:19

Hooby and easy, I have just taken a sleeping pill and thought I'd quickly check mn. Very glad I did. I will re-read your posts in the morning xx

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elportodelgato · 19/07/2014 17:16

Hi again,

I slept an amazing 11 hours last night (!) and woke up feeling pretty good. Today is DH's birthday so rather than mope around we packed up the car and went to Down House for the day - DH is a big fan of Charles Darwin and we've never been down there. Just home now and have had the loveliest time, I forgot all about cancer for most of the day, the DC slept in the car home and we listened to radio and chatted just like normal, such a relief from the worrying. We are going out tonight too so I do hope by bedtime I will be happier and tired and get another good night of rest. And that's another day ticked off on the route to Wednesday.

Thanks all for keeping me sane, this and the tamoxigang are really holding my head together

OP posts:
HaveYouTriedARewardChart · 19/07/2014 18:05

Great - have a lovely evening!

smee · 20/07/2014 00:57

So good that you're keeping busy. I'm not sure if this is a useful thing at all, but my DH and I cooked meals together and drank defiant bottles of sparkly wine to say 'up yours' to cancer. I wasn't at all hungry, but cooking kept my mind off it. Not long to wait and what a sane post from Hooby. She's spot on as you're at the v.worst point.

Just on the pain you felt - liver cancer rarely gives pain. I'm not making that up as it's honestly true. Liver secondaries symptoms are weight loss, jaundice, etc, but not pain like you describe. When I was diagnosed I had an intense pain under my right rib. I was convinced like you that I had secondaries but I hadn't. Stress plays all sorts of physical tricks. The pain's real but the cause really can be psychological.

All the fear you feel is horrid, real and utterly sane and normal, but the chances are still good. Hard to keep hold of that, but it's true.

elportodelgato · 20/07/2014 07:49

Morning all, we had a lovely night last night - the southbank in London was very busy and it was lovely and warm, everyone out in summer dresses at 10pm, like being on holiday.

I got home tired, had a cool shower, DH and I even DTD (sorry tmi!) which we haven't since all this started, and which made me a bit tearful. Then I slept OK but still up at 6am. The doctor has said to only take a sleeping tablet every other night Confused so last night I was going it alone.

A bit panicky again this morning but holding it together so far. The DC are awake and playing nicely with their lego, and I am reading downstairs, wondering what to do today. Smee, thank you thank you thank you for your kind words x

OP posts:
FrancesNiadova · 20/07/2014 09:02

Sending you big hugs Elporto, it is a rotten place to be in.

Sept 2012 I was diagnosed with breast cancer. I was lucky, it was all over my breast but not in my lymph nodes. I had a mastectomy with LD flap reconstruction. Since then, (& a few more nasty scares) I've had a nipple reconstructed on top of the original flat skin graft. I've had nipple & areola colour tattooed on it too, (you wouldn't believe how many different shades of nipple there are!) Rather proud of my tittoo now .... hopefully I won't get stared at quite so much when I'm able to go swimming again Blush

It is a sh#t time & a b¥stard disease; I still get upset now at what I went through. It takes time to come to terms with everything & adjust to the new normal.

A brilliant website, recommended to me by my breast cancer nurse is:
breastcancercare.co.uk
They have lots of information pdfs that can be downloaded, an internet forum to chat to others with similar diagnoses, resources to send for eg a story book to read with your child to help them understand, ( this was excellent).
Most useful is the helpline number that you can use to phone & speak to a proper breast cancer nurse.

Sending big hugs & prayers to anyone going through this Thanks

elportodelgato · 20/07/2014 15:46

Hello all, so very hot today and I am tired and the DC have been playing up. I have found a new thing for my brain to worry about - remembered that after my MRI on Friday the nurse said they had also done a scan of the base of my spine, and now I am freaking out that there is something there too. Surely this would have shown on my bone scan though, which was clear when I had it on Wednesday? Oh god, I am so very very scared.

Hooby, I keep re-reading your lovely post about imagining symptoms and I know exactly what you mean, but I can't help thinking the worst at the moment Sad please keep your fingers crossed that I am back here on Wed evening with the 'good news' (ahem) that I 'only' have breast cancer. This outcome would almost be a blessed relief from what I am going through at the moment.

OP posts:
elportodelgato · 20/07/2014 16:16

PS: thanks Easy, I am doing quite well with NOT GOOGLING THINGS, it was practically the first thing my nurse said to me, and so far I have managed to stay strong. Only a few more days til I get a proper diagnosis, I do hope I can get through intact x

OP posts:
helzapoppin2 · 20/07/2014 22:44

smee, you reminded me about the wine! In the early days I had a glass every night, to "take the edge off" and help me calm down and sleep. I regarded it as medicine. It really helped!
elporto you've come a long way in just a few days. Congrats on getting on with life and having fun and not letting it all hold you to ransom.

FrancesNiadova · 20/07/2014 23:27

I do hope that all is fine with your bone scan. It is very frightening. 1 of the nasty scares that I had was possible secondary spinal bone mets. A terrifying start to the year. Turned out to be disc damage relating to a leg injury that I have. Phew!
I hope that yours turns out to be non-cancerous too. Being in the waiting room is the worst place to be. Once all the test results are in, you can concentrate on your treatment plan. This is just a period of time that you have to get through. Sending you all best wishes & the strength to see this through. You can do this Thanks

elportodelgato · 22/07/2014 11:27

Morning all, I am having a pretty bad day so far, very very sad indeed and worried about tomorrow's meeting - fearing the absolute worst as always Sad

I have kept myself distracted by being busy the last 3 days but today I really need to get my hospital bag together, do laundry, do some basic admin round the house etc. I have literally never been so terrified in my life, I feel almost paralysed by it. Thank you everyone who has held my hand on this thread and who is thinking of me this week, it means the hugest amount to me.

OP posts:
smee · 22/07/2014 12:03

Oh poor you. It really is the toughest time. Keep busy if you can. I chose a song to hum to myself to quell the panic, so maybe try that. It helps you breathe/ distracts you. What time's the appointment? I hope it's in the morning, as at least then it's less waiting time. xx

EasyToEatTiger · 22/07/2014 12:04

It's a horrible time for you. Can you do something really kind for yourself today? I bought some expensive shoes, something I would never normally do. For me, endless tests with results of yes, no, don't know. That went on for months and months. Then every test was thrown at me. You are not alone.

elportodelgato · 22/07/2014 12:05

Hi smee, I am trying to do the mindfulness meditations twice a day, though tbh I am not sure if they're helping. At the moment, the only song I have in my head is 'Survivor'! Which I suppose is positive at least.

Appointment is 2pm tomorrow, but DH and I will go for lunch first - my mum is collecting the DC at 11.30am

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elportodelgato · 22/07/2014 12:08

Thanks Easy, I know I should be grateful that I've only had 2 weeks of tests and waiting, I know lots of people have a lot longer to wait, your experience sounds really really hard.

I think I will go out after lunch and have a walk in the sunshine before collecting DD1 from school at 2pm, I hope it will clear my head a little.

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gingeroots · 22/07/2014 12:14

oh golly ,thinking of you over here in SE London . It's so ghastly what you're going through now .
In similar circs last year I endlessly listened to Richard Thompson's Mock Tudor and read Lee Childs and C J Box . And paced .

I remember feeling like I was going to my execution when I went for results and before the op .

No help at all ,I know . But thinking of you .

Sending hugs and Flowers + Cake + Brew