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Just diagnosed and wanting to talk to people who understand

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Re: Just diagnosed and wanting to talk to people who understand

 
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Re: Just diagnosed and wanting to talk to people who understand

Hi Delly, I was just reading your post, and noticed that you mentioned going to see a lady surgeon at the North Manchester Hospital? One who has a fantastic reputation?  I was just wondering if she was called  (removed due to T and Cs) , because she is the oncologist that I am under.  She is lovely, really down to earth, and, like you say, has a great reputation.  She is funny, human and understanding, she spends as much time with you as you need.  Fantastic.......please let me know how you go on.    Love Pauline xx

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Re: Just diagnosed and wanting to talk to people who understand

Ditto Francine.
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Re: Just diagnosed and wanting to talk to people who understand

That's good news about the scan Amanda.What a year you have had.
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Re: Just diagnosed and wanting to talk to people who understand

Great news Amanda. I'm pleased to say that the sore boob is now starting to heal quite well since I had the new dressings. They made an amazing difference and I still feel very angry that the hospital gave me the not so good but cheaper ones. If it hadn't been for a friend who went through the same thing and told me what to ask the GP for, I'd still be in the dark. If anyone suffers broken skin from rads I can tell you the name of them. If the hospital won't give you them then your GP can order them in. Worked a very long day today and am pleased to say I felt fine. Of course it may catch up with me tomorrow. Can't wait for the 18th when we're closing the business until 04 Jan. We both need a break after the year we've had. Sending hugs to everyone still going through treatment. I never actually thought I would get through it and some days were very dark. Just hang in there, you'll all reach the finish line sooner or later. My journey lasted a year, three ops, five stays in hospital and 25 rads but here I am, nit the old me yet but getting there. X Francine
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Re: Just diagnosed and wanting to talk to people who understand

Amanda, so pleased CT was CLEAR. woohoo xx
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Re: Just diagnosed and wanting to talk to people who understand

Jill - Thanks darlin and nicely done - gentle and point taken. With not posting so often, I tend to try do it in one BLAST, but understand it interrupts the flow of SHORT regular posters!! Taaa  for lovey x

Amanda - Thanks. Interested to see what style you go for. Not very nice for you BUT it IS in a way though isn't it, 'cos it'll hopefully help you to feel better, if you feel you're looking all right on the outside even if not underneath?? x

How's Sissy, MadAnge, Peggycat, Jobes, Francine, JenJen - how you doing flower?? Charlie - where you up to?? Bazza and Nikki, All else not named. Kisses to ALL of you. I'm in a generous mood !! xxxxxxxxxxx

 

DizzyDee - Wow, that's great that you've found yourself a really nice fella. I think once I'm nearing my end of looong delayed recon of 9 yrs,or NOW in fact,  I' m hoping I may be joining you in the partnership stance. I "bat for the other side" so to speak, and HATE being without a partner to "share life with", but would rather be without one thanput up with a DUFFER !! AND good luck in your move to the USA - don't blame you for getting out of this country. I'd go live in Italy at the drop of a hat - love EVERYTHING about IT and the Italians - like me, cheeky and mischievous humour. x

Am catching up on "back posts". Claire - Yeah, isn't it difficult losing those important "Bumps" when you've been so happy with them. BUT, I can't tell you how "exciting" it was to look down at two NEW bumps following my 1st recon op, albeit smaller to begin with. That was just an initial 100mls, but it had filled out the SIDE of my chest again. Didn't look all scrawny and ribs any more. You have THAT to look forward to. Please go for it asap. It restored so much confidence immediately back to me at the time - like a woman with a new pair of T*ts haha !! Hope that may cheer you up and give you some HOPE sweetie, hey.  It was my HAND prob that sent me down to the black hole, and loneliness. But i'm okay now, doing GREAT in fact - never felt better mentally, in the last 12 yrs in fact. x

 

Picked up a reduced "Best of Whitters" cd, Another tragic loss. What a beautiful looking woman, and what an amazing VOICE. Cost me £4 !! Will be added to the party dance music for the 14th 'cos it'll be all 70's 80's i.e.DECENT dance era music. You all coming ?? Let me know, cos I may need to pick a bigger venue than the 28 seater restaurant, literally down the road, then back to me for fireworks and dancing till whenever !!

Thanks for asking Claire, Chloe's going to the vets next Tues to be "checked" on her progress. Is sl-o-w-l-y but surely getting fattened up. My Darling cat and bestest friend - awwwww, love her to bits. I give her massages - neck and shoulders - loves it purrrrrrrrr. x

Heck, this is a "short post" !!  NiteyNitey 

Delly-givin-it-some-welly xxxxx

 

 

 

 

 

 

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Re: Just diagnosed and wanting to talk to people who understand

Hi Delly, I'm fine thanks, been busy with family stuff, which is nice! CT scan result finally came back yesterday and was clear...quite a relief! Got an appointment with a wig maker tomorrow, should be interesting! Waiting to hear when I will start chemo now.

 

Hope everyone is getting by ok, keep those chins up the best you can, as said to me by my BCN, cancer is a 'life changing diagnosis' so expect some pretty deep lows from time to time and those newly diagnosed, it does take time to adjust to the 'sh**storm' but it does get a little easier.

 

Keep reading and posting here for lots of tips and support.

 

Amanda x

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Re: Just diagnosed and wanting to talk to people who understand

Delly ,if you could make your posts a bit shorter if would be easier to keep up with everyone's news.How is your cat?
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Re: Just diagnosed and wanting to talk to people who understand

Hey lovely girlies,

So sorry to have dominated the thread. No-one's posted for a while, today. I hope it's not because of me "rabbiting" on. Soirry if it is. Just tell me, I'll try to cut it down and "rabbit" on another thread !! Annoy somebody else instead !!!

Forgot to ask how's Sissy and Amanda doing ??

Loadsa love

Delly poos xxx

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Re: Just diagnosed and wanting to talk to people who understand

Mf and Butterfly - Ahhh, thanks for the info ref Letrizole versus Tamoxifen. Does that mean you were post meno Mf at the time of your treatment?? Anyway, I'll make a note  to look it up as things have advanced so much with both drugs and treatments since mine 9 years ago.  I'm always intersted in anything medical, espesh to do with BC. So how are you both doing now?? It's that much tougher for you Mums isn't it.

 

(FamilyTree) Luscious Lorna !! - sorry, that names stuck with me. Caught your posts from the other night. You didn't answer my question a while back, asking what sort of work you are involved in ?? I sensed it was something in the therapy field ??

 

Blossom - how you feeling today?? It's hard not to worry is'nt it. Listen, you're only 10-11 days in. Yes, maybe the Letrozole is giving you hormonal downs as well as the shock of your diagnosis. Does it list "depression" as a poss side effect ?? Some of us are a lot more sensitive to hormonal changes than others. It may be if SOME of your "down" is due to the tabs, that it may level out after the first month, as your body readjusts. Don't let this/me influence you, what I'm going to say, but after losing my first boob, I bounced back really well. I'd wanted immediate recon at the same time as the mastectomy but due to a no. of things, I couldn't have it done. Anyhow, I was advised to take Tamoxifen but didn't. Following my 2nd mast in 2007, they wanted me to take Tamoxifen and I didn't argue. Losing my 2nd boob reeeally smashed me up as a person mentally and confidence wise, espesh as I was still single. I went into major, major depression. I tried Tamoxifen for 2 wks and felt even WORSE !! Depression is listed on the side effects. I don't know about Letrozole. Anyway, the upshot was - I binned 'em (well took them back to the pharmacy to dispose of!!). I felt a definite lift to my mood within a day !! Yeah that quick. My attitude was JEEZ, I'm ALREADY in the depths and I feel I'm even worse on these tabs, so I'd rather take my chances without them, and feel I've got a chance of a BETTER QUALITY OF LIFE !!!!   

 

Claire and Tina - Claire, don't let the fluid build up too much. How big is it at the mo??. If it's getting on for the size of an egg, phone up straight away to arrange to have it "aspirated". With a mastectomy, if it builds up too much, it prevents the skin from healing between it and the ribs and structures underneath.

Yeah, hair and boobs, we womens "Crowning Glory" as they say, and our "Visible Feminine Frontage" as 'I' say. They're what sets us apart from the guys, those sensual curves, hey?? To prattle on a bit longer, in a hope that it may give you a happier, better perspective on your hair loss issues and how important hair is to most of us women. My Mum started losing hers in her 40's. No, not due to chemo, either through years of colouring, perms and/or hormonal. I can remember the lengths she went to to try and retain what she had left. Attended all sorts of hair clinics, used all sorts of lotions and potions. Even considered a transplant which wasn't really heard of for women in those days (70's). I was in my teens, and used to watch her oh so carefully comb her hair to avoid any coming out. It had a devastating effect on her, confidence wise, and she was highly embarrassed about it. She was a lovely looking woman, and she put on weight because she comfort ate because of it. Needless to say, she stopped dyeing and PERMING it, which did improve it slightly. Other than that, she was always gentle, gentle and found a style that managed to disguise her balding temples and top (typical male baldness pattern). In actual fact, from then on, her natural hair colour went "white" which suited her better and brought out the colour of her clear, bright blue sparkly eyes and beautiful complexion, and the "Straight" style she kept it in (A la Doris Day or Honor Blackman !!), also suited her far better than an ageing curly permed style. No-one would have known it was so thin and fine.

I've had the fortune to inherit her lovely skin but UNfortunately her hair also. Badly receded since my menopause at 50 (hers was late 30's) and it's PERMANENT. I've also thought of transplants, but it's pretty costly. I manage, and it always gets a "bit" better when I'm in a better frame of mind and eating healthier again, but not a lot.   Sooooo, hope all of that helps a bit.

Get some boppy music on and do some silly dancing round the kitchen table - good exercise too. Watch Wallice and Gromit films (Just sent The Curse of the Wererabbit to a couple of down friends - it's sooo funny)

How's all you Chemo-cuties doing ?? Off to get my hair trimmed for Crimbo now. See yall later.

Loadsa love

DoolallyDelly xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx 

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Re: Just diagnosed and wanting to talk to people who understand

Thanks mf,  I'm just panicking I know...... Just another thing taking away my independence and changing my life!! My husband has a good secure job, and I know push comes to shove we'll be OK. Well just have to tighten belts even more...... Doubt I'll get anything especially if it's means tested as he's over a certain bracket. 

I've  not had a great night, stayed on the sofa and cried a lot. 

Claire, thanks for being there, appreciate it. I know I'll be ok, just have to bounce back up and stop this **bleep**e winning. Like you Claire, and yes huge respect to those who can, I cannot even contemplate walking about bald. It takes me a lot to get my hair shorter in summer! At the moment Ive a shoulder length Bob.....Thinking I'll ask my hairdresser to style it in a style that can dry in its own without the use if hairdryers. Vain? Suppose so. Irrelavent and trivial in the grand scheme of things?...... Yes. Claire, I had a good information booklet sent to me all about cold capping etc. PM me your private email and I'll forward it. Xxxx have a good day guys. Tina 

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Re: Just diagnosed and wanting to talk to people who understand

Good mornin lovely peeps'

Boy did I zonk out after my last posting. Woke up wide awake at 5.30!! All a bit weird at the mo. Think it might be time to exchange the Tog 4.5 duvet for the Tog 9. Might be drop in body temp that's doing it.

 

Yeah Claire/Tina, it sounds as though I'm falling to bits. My hands are my upset, no boobs are nothing compared to that. However, I was having a catch up chat with one of my X neighbours in Rochdale the other night. She's a lecturer and head of Physio Dept at the MM Uni in manchester. She knew I'd started with hand probs before I moved 2 yrs ago. She sparked me up to try get some help as all the research I'd done was showing I'd have to wait until it'd reached it's worst to then surgery to free the tendons. My hands have always been so skilled work and DIY wise and people used to often complement me on them whilst I was beavering away on their feet. Long pianist fingers. No, I'm not being arrogant or vain. I also used to keep my hand in with massage for friends, from having trained in Swedish + Shiatsu (Accupressure) many years ago. Loved it, so soothing to DO as well as receive !!

The difference Claire is that I'm now addressing all of his stuff as oppo to it all bogging me down - extra on top, pushing me down that black hole even further mentally. But as I said, at the moment it's a help that I'm NOT working so have the time to sort all the body MOT issues.But I WILL get something to provide an income. 

And I say it again - it's thanks to all of you on here. that I'm almost soaring now !! In fact, Better than I have ever been in fact. Quite miraculous. Seeeriously. It's why I say Blossom - "USE IT", it'll help, do you good.

Claireebee, we've got to find something to help calm your mind down when you're waking up. Did you read and look into any of the suggestions on "The Night Birds". Something you can pop in your ears whilst you're in bed, without waking hubby, that will soothe your troubled mind and help send you back to sleep. Do you have a little discman or MP3 player/ I pod ?? (Am not so up to date on teccy stuff). There's a load of therapy cds/downloads to help with sleep or fretful periods, that will help to settle you're mind down again, and often with this type of thing, the more often you use them, the quicker they then start to take effect. Because they're "training" your mind. It's like Hypnotherapy, the more you have it, the quicker you go into the "trance" state. Come and join us when you're awake weird hours. I'm often at my most imaginative and productive late night (if not too tired) and early morning. Have come up with my best ideas, such as recently - How do I collect a sample of poo and transfer it to a little plastic pot container, in a hygienic way and without having to touch it myself !! Ha Ha !!. Toilet seat up, large sheet of foil into the bowl and I then "fashioned" a spoon shape from another piece of foil, to decant it to said "Deposit pot". Could then just chuck the "spoon" into foil sheet and screw everything up, edges inwards !! Et voila !! Doc thought it was ingenious.

 

Jobey - get yourself down to the frozen food store, with the name of frozen water and land on the end. Bought some Ostrich steaks to try - beautiful meat. Get some, they're as good as decent sirloin and at the same price. Get GEM to cook you "Ostrich and chips" next steak and chips night. Am still waiting for my invite !! I seasoned with a bit of salt and loads of black pepper then lightly roasted mine on a bed of pre roasted veges 10 mins before the end, with a quick turnover 1/2 way. That's been the only FULL meal I've eaten in. weeks. 

I've been making loads of friends in the last 3 months, including Ena, lady mentioned above at the back of my house. The one with the lovely thick hair 6-8 months after chemo (Claire and Tina). I also got chatting at great length to a girl in her 40's whilst we were waiting for our prescriptions. It was obvious (to me) that she was recovering from chemo as her hair was about 1/2" all over. She didn't try to hide it, wasn't bothered. That was her choice, you two, the majority of women and myself in fact WOULD be. Anyway, I just sat next to her and asked her how she was doing ?? - had a really good long chat even after our prescriptions. I'm sure we'll bump inoto each other again, Macclesfield being a smallish place. I'm probably bolder than most people and she said she was nicely surprised as oppo to people just ignoring, which is often through embarrassment. Had she not wanted to talk about it, I'm sure she'd have just said. Keep remembering what I said to that patient of mine and complimented her on her new hairstyle, without knowing it was a wig. Looked fantastic. I know, I know, of course it's terribly upsetting. I've just ordered a fresh crate of Merlot and NZ Sauvignon so let me know and I'll be round.

 

Also met the most charming, beautiful to look at Jamaican guy. Have nicknamed him "The man from " *LDI" - met whilst shopping there and spent 1/2 hr talking in the middle of an aisle. Mad innit !! Met up for a drink and chat few days after. Will post in more depth in the "Night Birds" when I get chance - quite funny really.

Am gonna let you go now, get on with some more cleaning and tidying up.

Love to all

Doolally xxx 

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Re: Just diagnosed and wanting to talk to people who understand

Hi Tandy. Macmillan can offer financial support and grants. I would contact them. There are other organisations that offer grants for people going through cancer, eg Liverpool Life.
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Re: Just diagnosed and wanting to talk to people who understand

Dear Blossom

 

It looks like lots of people are able to offer support on different subjects.  Like mf said, re mood / depression/ emotions etc.....  You have had a big shock and it is difficult for our minds to process when you don't currently have a defiitive plan and still have lots of decisions to make.  I think it is unlikely that the Letrazole is having such a significant effect immediately and i think the devastation you feel / are dealing with  (i don't think there's any other word for it)  is likely to be a culmination of everything.

 

I am much further down the line than you ladies on this thread.  September 2012 5.5cm IDC. since then i've had surgery chemo radiotherapy then 2 years of Tamoxifen.(similar to Letrazole but for pre menopausal) and have now been on Letrazole for 6 months.  I experienced some side effects, upset stomach joint pain (pretty tough in the night and first thing in the morning).  

 

I am three years on from diagnosis etc and back at work... Went back full time have since changed to three days, much better work life balance for me.....  i have to say i've had far worse side effects from Naproxen and Adcal D3 than with Letrazole so please don't worry too much.

 

Blossom ..  the other thing you mentioned was how long you would be with different sized breast.  Talk with you BCN to see what is specifically available in your area.  I had the same scenario until i had the other side reduced for 12 months.  i wore a microfibre (soft moulded) bra (actually from Nurture breast feeding range in Debs) with a small partial prosthesis which was supplied by Prosthesis Nurse within the unit where i had treatment.  In some areas the Macmillan Nurses are trained to fit these....  I hope this is helpful.

 

Take Care   xx

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Re: Just diagnosed and wanting to talk to people who understand

So sorry you are feeling down again Tina. It doesn't take much does it to knock us back when we are so vulnerable. This disease is evil. You feel perfectly healthy then find out you have something that could potentially kill you, results take ages to give you the full picture, many of us have to have more than one op, we get over that then we are facing being poisoned and made Sick to make us better when we didn't feel ill in the first place!!! So much to get our heads round let alone coming to terms with losing hair and boobs the things that make us feel feminine! I HATE cancer! 

I am just trying to make the most of the good days. Feel ok but have fluid building up around left mx site.

Tina we both love our hair. Let's give the cold cap a try and if it doesn't work support each other through. At least there are some pretty good wigs available. I don't think I will be someone who can go out and about bald.! Respect to those who do. Incredibly brave!

delly I hope you feel better. I am glad Chloe the cat has picked up.

love to everyone Claire xxxxxxx

 

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Re: Just diagnosed and wanting to talk to people who understand

Hi Blossom. So sorry you have to join us here. I am also 58 and had a similar experience to you last March. I had a routine mammogram, which revealed a tumour - I couldn't feel a lump because it was deep in my breast. I was told during my biopsy that it was almost certainly cancer. Like you, I was absolutely shocked and almost had a meltdown. Waiting for detailed results was the worst time. I cried, worried about my children (I'm a single parent), and swore at someone at work! You'll feel better when you get your results because then you'll know what you're dealing with. I was put on Letrozole after radiotherapy but had to come off it because of severe bladder pain and blood in my urine. It's a hormone suppressant, so it's likely to affect your emotions, but some people find things settle down after a while. You're bound to be imagining the worst at the moment, but many people with even advanced breast cancer live fulfilling lives for years. There's always someone on here who can support you and there's a great helpline too. Best of luck with your results.
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Re: Just diagnosed and wanting to talk to people who understand

Hi Delly, Wo! You are having it bad lately! Glad you're getting some Z's in though! 👍🏼  and your cat is getting better. Yeah! Go for it with the Italian it sounds just what you need!! Shame we're not closer or I'd join you! 

As you can read, feeling pretty pants again..... Up, down, steady....... Oh there I go back down again! Back to not sleeping tonight, tears in the dark while hubby snores so I'm back down stairs on sofa in the dark. Hair appointment tomorrow and all I can think about us this will probably be my last one for quite a while. My hair is  my best asset, more so after putting on lbs since being inactive on the sick! I know I'm going to lose the plot up and when it goes....... Praying I can cope with the cold cap and save it. Xxx hope you sleep well tonight Delly. Xxx hugs. Tina

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Re: Just diagnosed and wanting to talk to people who understand

Blossom - Afraid i can't help you with ref to Letrizole, but any tab, paracetamol, has a long list of possible side effects. They have to, but you may be ok, without any effects or maybe only mild. I'll have to look it up. There are many on here who've had to take it.

With ref to your mental state - You're in a state of shock at the moment and very, very scared. Huge amount to take in and somehow get your head round. This disease STINKS/SUCKS whatever you wanna call it, whatever you want to say about it - you're in the right place here. Well done on making the effort. Use it Blossom, Even though it's virtual, it will help you much more than you think. You can let rip to sympathetic, understanding ears who know exactly how you must be feeling right now. So, you are never alone with it. There's hundreds of us, so there's AWAYS someone who can offer advice, share experience of any problem you may be experiencing. If you wanna have a RANT, SOB, MOAN, log yourself on.

If it's any consellation to you at the mo', there are many of us who're long down the road from our initial diagnosis. We may still have mental hiccups. It's difficult to find a balance between NOT allowing this disease to rule/ Eff up your life, and being sensibly vigilant. 

 

You mentioned you have to make a decision. Do you feel like discussing it with us? It may help.

 

Hi to everyone - hope you're all doing okay. Seem to have been very busy with Personal MOT appointments - eyes, stomach prob is being looked into further.Had blood and poo tests done to see if Salmonella or other bacteria, liver prob. Haven't had results yet but saw a lovely Male GP as an emergency appt. He's also arranged for an Ultrasound scan so is being very conscientious. Eye test showed up early cataract which has to "ripen" ( !!) before they do anything. Am not concerned about that, it's easily remedied and explains why I was struggling with sunlight and headlights when driving. Stomach's been a month now, lost 5-6 lbs and washed out as not getting enough fuel in. Feel sick about a 1/3rd into a meal, even though I'm hungry, and it's lasts for an hour after. Got a fridge and freezer FULL of tasty, tempting food that keeps being thrown away. He's given me anti sickness tabs which are helping, plus make me sleepy so I'm hitting the ZZZ's in a bit. I'm STILL ok MENTALLY though. Have another appointment with him next week to ask him to refer me to another breast consultant. Have decided to see the lady surgeon a North Manchester, even though it's a trek from here, but she has an amazing reputation. Sooo, I'm "getting back on that horse" - yeeehaaaa. On top of my tum, my knee locked 4 days ago so am hobbling around. Have to go back to my knee man to get another clear out arthroscopy. Also asking to be referred to the "hand" unit, see if they can help with improving my hand and finger mobility and possibly see if I can prevent it from worsening. So it's just as well I'm not working at the mo, being the DEMIC that I am at the mo'.  Went and had a  neck and shoulder massage yesterday - lovely jubbly. Take a few in succession to soften up the tough boot leather shoulders !!  Chloe, the cat seems to be doing better due to my excellent nursing skills and attention. Has put a bit of weight on and her coats improving again, back to silky soft. And I'm not complaining, but she's started being very nudgingly demanding for attention and giving it. Hope it's not a "sign".

 

I'm really sorry some of you are having work and sick leave issues. As Jobes said, it's hard enough to just cope with this disease on it's own without the extra financial struggles and complications.

Talking about you're hair upset Claire, got chatting to a lovely lady down at a little Italian restaurant /coffee shop I pop into for an expresso occasionally. Have got to know the guys who own and run it there. Discovered she's another of my neighbours at the back from my house. Complimented her on her lovely thick hair and haircut, only to be told she'd had lumpectomy, then chemo earlier this year, so was only six months back to her own hair!!

Although it's an Italian restaurant, they do Tapas nights on Fri's and Sats. Only seats about 26 people this place and they're Unlicensed so it's "Take you're own wine or beer". Am thinking about getting a loada people together for my birthday in Jan and booking the place out. Love Tapas and paella. We could then carry on at mine for fireworks and a party. I  feel I've got some LIVING TO DO and FUN TIMES TO MAKE UP FOR !!

Loadsa love to everyone

Dellypoos xxx 

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I was told it wasn't advisable to work during chemo as I work in school and classed as high risk of infection. I didn't ask for the long sick note from 25th November, she signed me of for something like 42 days? I assumed I could request a sign back to work when I felt ready post OPS? I've been in this job 2 years January, up till then entitled to 9 wk full pay (which I'm almost at) then 9 wk half with ssp top up. Then after this ssp (which us crap, £88 wk) for think 6 weeks. This'll take me till the end of April..... Then told absent without pay according to a letter I had a few weeks ago from payroll. I am ringing them tomorrow as I was told by HR that my entitlement increases on being there 2+ to 18 weeks...... Though I'm not sure how this works if I've been off all this time since October!? My BCN said some financial people go to the unit and I should ask their advice as I couldn't be left with nothing? Maybe disability allowance? I just don't need this extra stress........... Xxx

 

Blossom, so sorry that you've had to join this forum, it's a **bleep**ty shocking time! You're right about the roller coaster ride! Support on here is great and ask away no matter how daft the question may sound to you, I, like many have asked for advice. I had 'changes' had mammogram and needle tests 17th August, biopsy 26th, MRI and more ultra sounds on the 24th sept and first procedure 8th October (lateral mammoplasty and sentinel lymph biopsy). Followed by a very long 3 wk wait for pathology results leading to 2nd procedure 12th November to get a clear margin (tumour turned out to be twice the size scans etc showed and found in lymph!) and an axillary node clearence. The waiting us hell! After another 3 wk wait now referred to my oncologist and chemo starting next week. Petrified. I've been up and down and cried so many tears. Take the support of family and friends Hun. And continue to read and post on here. There's lots of other threads you may find useful too. Xx sending you hugs xx Tina 

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Re: Just diagnosed and wanting to talk to people who understand

Bless you for taking the time to answere a stranger, they are not suggesting a masectomy, they are suggesting breast reduction throu cancer removal, which would mean when my treatment is over I would then have to go in to get the other one made same. Its not that thats causing the problem, yes it was a shock, but Im now balling my eyes out all over the place, Im not one to cry, I can only put it down the the bloody Letzerole that I have been on for 10 days, Ive never felt so low. I wont know until after surgery if its gone to my Lymph nodes, consultant thinks its unlikely given how small. So if I have removal by reconstruction how long I'm gonna be big boob, little boob I've no idea as I dont no if Im gonna have to have chemo. I feel like Im about to get on a roller coaster without knowing what the ride is. The depression has hit me like a sledgehammer, Ive never in my 58yrs sufferred from depression, Im a bubbly work full time, run after my 4 grown up children their partners and my 5 grandchildren. Now, well I don't recognise myself.Im still working, surgerys scheduled for 11th Jan, but what I'm going to choose, well I've no idea. Grateful thanks for your reply X

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Re: Just diagnosed and wanting to talk to people who understand

Blossom I'm fine on letrozole. Been on it since April so everyone reacts differently so don't panic. Although it must have been a huge shock at least you didn't have the wait for results...that's been a nightmare for most of us. If it's small why a mastectomy? Lumpectomy is more usual. Sending love Lorna x
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Re: Just diagnosed and wanting to talk to people who understand

Tandy I think you will find your Dr is wrong. Lots of people work in between treatment when they feel fit etc. Get sick notes for shorter periods not months, then you can go in when you're up to it and get another when you're having treatment. 6 months max on full pay for same condition. I'm sure that's right x
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Re: Just diagnosed and wanting to talk to people who understand

Ive just been diagnosed with Breast Cancer, following a routine 3 year mammogram screening, I had no idea no warning no signs, just a letter 10 days later asking me to attend a further appointment 2 days later, which I did, whereby I was told although they did a biopsy that I definatley had a small breast cancer, HUGE SHOCK, no witing for test results, just yep you have it. Seen a consultant, I suppose Im lucky!!!!! Its small, I have to decide whether I want the cancer removed as a lumpectomy ( I have no lump) or as a reconstruction, I have HH cup boobs. They have prescribed me Letzerole, hey ho Im at the point of sucidal, and Ive never been more well balanced in my life. Now Im reading all this side effect stuff on this drug, I dont know which way is up, anyone else experienced same? Or is it just ME XX

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Re: Just diagnosed and wanting to talk to people who understand

Its bad enough without having money worries on top! I'm almost embarrassed to say that as I'm on salary I do get paid for any sick days I have but I honestly think it should be the same for everyone with Cancer , not like we have chosen this after all! Xx

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Re: Just diagnosed and wanting to talk to people who understand

There is no rhyme or reason to this thing(it's not fair ) , it's horrible, it's tests you and your family to your limits but the the vast majority of us will get through this.Keep strong ladies,there will be light at the end of the tunnel eventually .
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Re: Just diagnosed and wanting to talk to people who understand

Ive been told that too! Well I've had enough too. Why do bad things happen to good people? It's bloody unfair! Everybody on this forum are lovely kind supportive people and none of us deserve this s***t! I can't wait for it to be over but what amazing support there is out there. Xxxxx Claire
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Re: Just diagnosed and wanting to talk to people who understand

Claire my last sick note covers me until January. Suppose I am risking things by going back, but I'm going loopy!!!!  missing my colleagues and kids. Plus the added worry of finances. Think she thinks it's illegal/unethical to say I'm ok knowing I'm due for chemo. When all this started, in hindsight, I foolishly thought I'd be back in work before Xmas! But the powers that be decided differently! Tell you, that big guy upstairs..... (though I'm swiftly begining to think there's not one!!? Not that I'm overly religious, but I used to think there was something there) had better throw his **bleep**e towards someone else other than me or mine!!! 'They' say, 'He only gives you as much as he thinks you can cope with'..... Really?!? Well I've had enough!!!! 

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Re: Just diagnosed and wanting to talk to people who understand

Oh Tina. It's not fair is it. I was allowed to go back to work between ops as my sick note ran out and I knew that for my well being work would help me get through. They would have signed me off if I had wanted. My GP knows I have to have chemo but has signed me off again till 3rd jan and said I could go back before starting chemo. I probably won't though. I have also asked for a sick note that says I can work the good week (on admin away from direct contact with kids) and they seem to think that will be ok. BCN thinks onc will agree but I will have to discuss it with her. I would check it out. Has your first note run out? May be the rules are different in Scotland or your GP has interpreted it differently. Hugs Claire xxx
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Re: Just diagnosed and wanting to talk to people who understand

Argh!!!!! So pissed off! Tears again...... Thought I was able to go back to work next week, if only for a week!? BCN and Oncologist said it was ok, so I could have a bit of normality before my chemo stint! And for personal reasons, I could get off the sick and break the cycle and sign off again after Xmas school holidays?....... When my entitlement increases due to service length. This would at least hopefully give me a couple more weeks sick pay or SSP? Just had call from my GP, who says she's not sure she can 'legally do this?' And has to discuss with colleagues and that she'll ring me back Friday!......  As its. 'Legal document' she said she's not sure if she could say I'm fit for work knowing I'm due to have chemo and will be off again in the new year? 

Feeling down again, worrying about treatment and on top of that the thought of running out of sick pay in January, then crap SSP up to April...... Then nothing! With a view to not getting back work till possibly June!?! 

Sick of it all!!!!! 

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Re: Just diagnosed and wanting to talk to people who understand

I am exactly the same with hair Tina. I am always fiddling with it and will really miss it. I am going to try my best to keep at least some! I feel as though this is all happening to someone else too. It must be a coping mechanism because if I think too much about what has happened I would probably crack up! Claire xxxx
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Re: Just diagnosed and wanting to talk to people who understand

Crazy isn't it Claire?! I still feel as if I'm talking about someone else when I tell people what's happening..... Don't honestly know how I'm going to cope with the hair situation? I'm a 'hair twiddler' have been since a child. It's my comfort when I'm tired, upset, bored, worried........ Can't bare the thought it not being there! 

I asked how come my consultant and hospital BCN said chemo wouldn't start till January the day I had my results? Then very next day told by oncologists BCN that it was happening much sooner?!..... Told that they're going from the length of time since my first procedure on Oct 8th when 'it' was initially removed. App it's recommended chemo starts within a certain time. Though I think that's NHS guidelines. 

Feeling much better today now the appointments are done. Having a lazy morning, still in bed, hubby just brought me breakfast up 😌 Seeing a friend later for coffee and not much else planned. Have a good day everyone. Xxx Tina

Amanda, hope you hear done thing good today!!! Xxx hugs 

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Re: Just diagnosed and wanting to talk to people who understand

Glad all went well Tina. Another step on the road done! At least starting chemo sooner means you will finish earlier. I think I will havecFEC and T too although onc will confirm. BCN rang me yesterday and she thinks I will start v early Jan.  

I am definitely trying cold cap too. Got nothing to lose by giving it a go! This time last year it would never have occurred to me that I would be contemplating losing my hair, facing cancer and having two ops in quick succession. How times change! Got to look forward though. Just want this thing done now!

have a good day

claire xxxx

 

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Re: Just diagnosed and wanting to talk to people who understand

Phew! Glad it's over. Diazapam seemed to work but staff were brilliant! Tooth out in one piece and was in chair for 15 mins xx
Oncologist wants to start next Friday all being well with the healing, bloods and s heart test I've still to have. 3 sessions of FEC then 3 of T. Hair loss a given do rec I try the cold cap to help. Dreading the side effects but got to be done eh?
Hope you get your results soon Amanda! Bloody worse thing this waiting lark!!! Thanks for your continuing support everyone. Hope you've all had a good day xx
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Re: Just diagnosed and wanting to talk to people who understand

How did it go today Tina, busy day for you, you must be feeling overwhelmed! Hope the meeting with the oncologist went well and also the tooth extraction!

 

I have not had the results from last Wednesday's CT scan and it's freaking me out! The oncologist said if I hadn't heard by Thursday that I should phone the BCN.

 

Hope everyone is plodding on ok.

 

Amanda x

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Re: Just diagnosed and wanting to talk to people who understand

Good luck with oncologist today Tina. At least it's  for your treatment  plan and no more results. Have you had a CT scan yet? Good luck with dentist too. 

I am also thinking that everyday is another to get through and each day over is another step along the road to the end of this nightmare. Can't come soon enough for me! I'm not usually one to wish my life away! My next hurdle is results of this latest op. Appt on 21st Dec. not thinking about it yet although I know what treatment will be. 

Amanda how did your appt go yesterday? I was thinking of you.  Have you got CT results. Did you see the onc or surgeon? I haven't met our onc yet but I have heard she is very nice.

Have the best day you can everyone.

love Claire xxxxxx

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Re: Just diagnosed and wanting to talk to people who understand

Hi Tandy. Good luck with your appointments today. I asked my oncologist how much each treatment added to my chance of survival. Not everyone wants to know this, but it helps you evaluate whether it's worth going through, and for me, knowledge is power. For example, chemo would have added 4% to my survival but my allergies led the team to recommend I didn't have it.
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Re: Just diagnosed and wanting to talk to people who understand

Hi Tandy4 - the fear of the dentist is not pathetic - I'm terrified.  My dentist told me to get a dog toy (she did ask that I take the squeak out) that I can hold and squeeze like a worry ball - it really helped.  I can never eat before going either so if I have to have anything big done, she makes me drink a glass of some sort of sugary water before we start. Good luck Sarah x  

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Re: Just diagnosed and wanting to talk to people who understand

Well guys, here I am the night before my first meeting with my oncologist tomorrow...... Feeling very nervous as to what he's going to say to me? What should I expect? Trying hard to think of any questions I should be asking!? Or do I wait and see what he's to say then ask? On top of this (some of you already know) I've got to get the biggest tooth in my mouth out too! It's been a long time coming, and I'd rather give birth ten times over! 

Amanda, I've spoken to them at the dental hospital about my nerves, they were very reassuring. Ive got a 4mg dose of diazapam to take and hour before my appointment.,,.. God I hope this calms me!!? Come on Tina!!! You can do this!! Trying to continue with the mantra of. Just another step to get over, this time tomorrow it'll be over!?...... Pathetic aren't I? 😏😖 xxx 

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Re: Just diagnosed and wanting to talk to people who understand

Thats ao true JenJen xxxx
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Re: Just diagnosed and wanting to talk to people who understand

Its all a bit rubbish but we can do this ! x

This whole thing is scary and we always find something to worry about when it comes to the C word, im now having chemo and it doesnt scare me anymore im on cycle 2 its become normal so quickly.. and although I cant wait for it to end I know why I am doing it and just getting on with with it because I have no choice and I hope that you all have few SEs and complications x

its just annoying that we have to worry about it but what is good is that we dont have to worry alone , example is now I am worried about my mastectomy after chemo which is the opposite of you ladies here who will tell me that its all OK and the surgeons will look after me it wont be nice but it'll be OK etc

all we can do is be here for each other and assure each other that each bit is doable and that we should just concentrate on the bit we are on now..

I dont know if anyone has read Liz O'Riordans blog but she likens breast cancer to a Triathlon so were all on different bits of it and some of us are doing it in a different order but eventually we will all cross the finish line,

Love to all
Jen x
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Dee thanks for posting....... Inspirational stuff! So pleased you're out the other side and like Claire says, at this point the tunnel still seems very dark! Congratulations on your new found love, wishing you all the best with it! So exciting!!! Xxxx Tina 

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It will you will get through this and find strength you thought you never had. One upside is the little stresses in life dont bother you anymore you can really appreciate life. This has made me do thingd i thought i would never do and now I am moving to the USA this summer!!! Hold your heads up high girls because you are strong women who will smile again. Trust me xxxx
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Re: Just diagnosed and wanting to talk to people who understand

Thanks Dee. How lovely that you are out the other side and have found love too! It's hard to see the end when you are in the middle of it but all you ladies who have been through and found the strength to cope with all that treatment brings are a great inspiration.
I keep telling myself that this time next year it should all be over. I've got everything crossed for that!
Claire xxxx
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Re: Just diagnosed and wanting to talk to people who understand

Oh Dee how wonderful..finding love! Inspiring x
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Just wanted to leave some reassurance to you girls. I have finished treatment and nowvon 10 years tamoxifen and 2 years Zoladex. I was single and live on my own when i was diagonsed in Jan this year. My workd fell apart like you girls are feeling. My GP put me on Citalopram and that really helped me get through treatment. I have a phobia of operations so i took Dizapam whenever i had scans and the day before and on the day of my op. It worked and I was able to get through it.
After i had my last radiotherapy session i met an American guy in London whos an ex Marine. We hit it off and hes coming to stay with me this Christmas. What a difference a year makes way back in Jan i never thought i would be alive now never mind in love!!!!! Just remember girls the stats are good for us. I only have a 10% chance of it returning in the next 10 years. Currently the Royal Marsden where i am cure 85% of breast cancers. Keep that in mind and know that it does get better and your life will be better after this. You'll be stronger and feel more alive than you did before. Sending all you ladies much love xxxx
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Re: Just diagnosed and wanting to talk to people who understand

Thanks Amanda, wise words. Fingers crossed good news for you at onc appt.
Hope all goes ok for you Tina too.
This is one hell of a ride isn't it! Shame we can't get off!! Claire xxxx
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Re: Just diagnosed and wanting to talk to people who understand

Thanks for advice Amanda, I'd intended ringing them tomorrow to ask if there was anything I could take?..... I've my appointment at 10 to meet the oncologist then dental appointment at 12:30!....... Feeling sick thinking of both! Xxx 

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Re: Just diagnosed and wanting to talk to people who understand

Hi Claire, I know just what you mean by fear of spread...it's what worries us all, isn't it? Boobs are relatively easy to get at (and don't you know it!) but if it's gone anywhere else, they can't just cut it off! My CT scan was on Wednesday, and I rather hopefully phoned the BCN line on Friday to see if the results were in (I had had my MRI on a Wednesday afternoon and been phoned with the results on the Thursday, after the MDT meeting, so it can be that quick) and they said ‘no’ and of course, I have decided they are trying to hide something awful and that they want the oncologist to tell me at my appointment tomorrow!

 

The way I look at it is like this; pain is a warning that physical harm is happening to you and you need to do something about it….you would jerk your hand away from the pain of hot water so you don’t get a damaging burn.

 

So emotional fear works in a similar way, you would have no physical pain walking down a dark alley on your own at night, but the fear would kick in and tell you not to go that way.

 

The problem with our cancers is that the fear that something is very wrong is there, but there is nothing much (other than attending hospital frequently) we can do to help ourselves. And on top of that, we have to put ourselves through a lot of pain and discomfort in the effort to get better!

 

Our body and mind just wants us to get the hell out of the situation, but we can’t…no wonder we’re in the ‘emotional cement mixer’!

 

Tina, if you get too bad on Tuesday, consider asking for a twilight sedative or similar, maybe phone tomorrow and warn them how terrified you are and see what they can off to help. It shouldn’t be nearly as bad as you think, but like everything we’re all going through, you mind just works overtime!

 

Amanda x

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Re: Just diagnosed and wanting to talk to people who understand

Claire it's a living bloody nightmare that rocks your world..of course you are going to worry it's spread. I was convinced every ache and pain was cancer and I've not been through a fraction of what you have. Talk of your fears, don't bottle anything up its bad for your health! Lol. You will get to a point it's not your first thought in the morning or last thought at night..not to mention the time in between! You should phone the helpline, hear a voice reassuring you. Writing doesn't always cut it. Here if you need to chat. Big love Lorna x