Tips- One year on from diagnosis!

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(Re- posting from another thread)

I was diagnosed a year ago today with breast cancer - to say it was a shock gets nowhere near how devastated I felt . The prognosis was not good. I was in my early 60s, still in stimulating work, had always been a normal / slim weight, drank little alcohol, kept to a very healthy diet, did lots of sports and had no family history of breast cancer. If it could happen to me, it could happen to anyone. Your breast cancer is not your fault. I was greatly encouraged by those from this forum who popped back here years later to report on progress .

So my message to all you newly diagnosed ladies is that it will probably be tough but doable . Make the most of the support you have - be prepared for close friends and even family to be unable to deal with your diagnosis and to be distant. Keep up a healthy diet (don’t get obsessed about particular foods), drink loads of water, maintain exercise (see below) and ignore the endless miracle cures reported in the press (most are at a very early stage). I had an elective mastectomy (no prob)- wandered round the local M and S next day with the drains hidden under a coat; then 5 months of the maximum dose of chemo (my tumour was small but an ‘aggressive’ grade 3). I walked / ran an hour a day all through chemo despite my oncologist telling me that this would be impossible. My VERY low immunity caused by the chemo meant that I stopped almost all social things . Early afternoon cinema showings - virtually empty- were a welcome break with my long suffering partner. Hair loss was immediate and still something I find hard to deal with as it is the outward sign of the cancer treatment. After chemo I had three weeks of rads when I took short afternoon naps from time to time but was otherwise fine. Now on 5-10 years (!) of hormone tablets - four months in and no probs with these.

The psychological loneliness and inevitable anxieties are the hardest parts of the whole process. This forum and the private Facebook spinoff of the group of ladies diagnosed at the same time as myself has been an indescribably MASSIVE support and source of laughter . Think positively , go with how you feel and know that you will come out the other side with - very probably - like myself - more genuine friends (I find I have little time now for token friendships), a sense of the power of good above and beyond yourself, and recognition of your own strength and resilience.

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I have never been on a website before ,but when I read your mail it was exactly like my experience…I was more or less fine all through treatment ,but feel completely adrift now !

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Thanks for your post Macey. We’ll get through this but too!

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Bit too

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Beautifully put Annie. Thank you. x

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Very well said Annie, I knew at the beginning of my journey there was light at the end and that I just had to stay positive … you have proved this is the case.

 

Very best of luck to you in the future Suzie x

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Macey, Annies post was a positive one about coming out the other side of this Breast Cancer experience and to give people hope. Talk to us about why you are feeling “adrift” now ?

It may help, We’ve all been there to varying dgrees but the common factor is the BC. You may also find it helpful to check into other areas of the forum if you aren’t just newly diagnosed. Have you had a further diagnosis, or perhaps secondaries, need chemo ?

Have a chat or even place your own new thread. People are so friendly and helpful on here.

Lotsa love Delly xx 

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Macey - Delly is spot on and right about support here - if you’ve not yet found it - for info - there are very helpful forum discussions in the

Living with and beyond breast cancer section

Then follow the

Coping with fear …thread

Delly, Cesrabbit and suzie - thanks for your responses - sending love and good wishes to you all

Annie

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Annie - Good morning. How are you today? Hope you’re still doing well.

I spoke to you previously on the Just Been Diagnosed thread.  

Delly xx

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Mornin All

Annie - You mentioned you were early 60’s - are you still working or did you have a forced retirement ? And have you a supportive husband/ partner ? Ref you hair, I don’t know if you picked up a link Amanda (A.Faed) left in Just Diag - 24/10. Although I didn’t require chemo or rads, I checked into it because I’m always interested to know what my other fellow women are having to go through - it gives me more insight. Have a look at it.  It’s a really goog blog from a young woman all about the vagaries of losing your hair, both serious and amusing but with some really good useful tips for anyone facing it/going through it. Has taught me to avoid saying certain things, that it’s preferable to say - “That’s really tough for you. I’ll be round with a bottle of wine so you can have a glug and a good blub if you want.”  But - there are women out there who CHOOSE to have a short crop and not connected to BC or chemo. The likes of Dame Judi and very nice she looks to - makes her look more of like mischievous imp, which she IS from her various interviews. That was not me being insensitive or condescending - just making a point.

Have you or do you use the chemo posts on here as well. You sound not long since your chemo. Is it all finished now ? Have left you lots of questions to answer.

 

Yes thanks, I’m physically well BC wise but not great mentally. It affected me badly mentally, body image wise, being a single woman, which has had a knock on effect with regards to ever launching myself back into the Dating game and such. I’m still on my own which I hate. However, much else has happened in the last 8 years which has also had a battering effect. It helps coming on here, but I’ve a long way to go to be anywhere towards being stronger again mentally. Have very brief periods of being/feeling more positive but have difficulty maintaining them or know how long they’re going to last. I’ve had to learn to cash in/take as much advatage of the “ups” to get stuff/jobs done, cos I can be back down the hole again literally the next day. I don’t like antidepressants, those I’ve tried made me vacuous/empty headed. Am trying St Johns Wort at the mo’- see how that goes for a couple of months. If no joy - I may have to give in and perhaps have to go through trying a few other antiD’s till one may suit.

 

Have a good day everyone

Delly xx  

 

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Mornin Naz

Awwwww, that’s really nice of you to reply and with some helpful advice. I’ve not been too bad the last couple of days, have actually been getting on with a few things (actually applied for a job - surprised myself). But feel absobloominlutely awful again today, so apart from a hair appointment and sitting on here, I probably shalln’t do anything else.

Yes, I have had thoughts of counselling. But there are so many different kinds and I’ve mentioned elsewhere on posts that it can be a matter of time of trial and error it takes to find the right therapist let alone the right type of therapy. I desperately need something otherwise I’m just gonna go under - it’s been going on for a few years now. Bit of a vicious cycle really in that when I’m soooo low, I don’t have the impetus to tackle these things or anything else which just makes things worse in that they all build up and then become OVERfacing. I so often give in to doing nothing.  I’ve become the worlds worst PROCRASTINATOR in existence !!!  I also get desperately lonely.  I know and think about what I need and want - partner, job, income, purpose, direction again - thinking about it doesn’t make it happen tho’ does it !

Thanks for your time ears, eyes and sympathy tho’ me dear.

 

Am hoping you and everyone else on here are doing well

 

Lotsa love Dellydowndums !  xxx 

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Hi Delly - not often on here now- others have given v good advice eg re therapy. I’d add - have an idea about where you’d want to be a year from now then break that down into little steps. Step at a time. Every day is so precious. love a

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Flip, I’ve just lost a long lenghthy reply which began >>>>>

My Apols girls for my late reply - it’s partly because I’ve been actually getting on with a few things which is good innit!  >>>>

My own fault for not keeping an eye on the autosave - it goes off after a certain length of time and my text disappears into the ether.

I can’t remember everything I said now so I’ll have to come back to you - sorry xxx

 

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Now then, I’m back for longer. Hi to everybody on here.

 

Naz, thought I recognised your attitude and demeanour. There’s me suggesting you retrain in counselling on your other thread and here’s you advising me to get it on this one !! Hahaha. Oh lummie.

Thanks for the links. I’ll look into them. I spent some time on the “Mind” site which is FULL of useful info. I haven’t heard of a local Maggies centre but will check. What do they do ??

With regards to my statement : I think about and know what I want and need in my life. But neglected to add that thinking about it wont or doesn’t make it happen.

Yeh I could afford a certain amount of private therapy. Although my previous exp of it wasn’t very good or helpful as neither was  6 week course of NHS psychotherapy. Don’t know what type it was - I just kept saying that I felt I needed some tools to use and develop and so hopefully be able to better handle my serious and prolonged downers. But all it was was a period to talk which didn’t do any good. 6 weeks is your quota and after that “You’re fired!” The therapist herself said "Sorry  Adele, I feel we’ve only just brushed the surface because you’ve had soo much loss in the last 6 years and ideally you need quite a few more sessions, but I can’t do it because of policy ! I’d had to wait over a year for those sessions, hadn’t heard anything and then went back to my GP immediately after the death of my Mum because I was in a desperate state and finally started with the seshes a couple of months later. As much as I don’t wish to decry the NHS because it’s so brilliant in so many respects, Psychotherapy in the area I was living and my whole experience of it, was an absolute FARCE.  

I’ve had CBT mentioned by a few other people. One of them was my brother, but as I’ve mentioned in other places - he committed suicide 3 years ago. Hummmmm,  didn’t exactly set a good example did it ?!! Although I’m not quite sure how long it had been for and at how many years prior to his fateful end. BUT, he had tried ALL sorts of therapy. CBT seems to be more about how to deal with yourself in the future as oppo to being based on your past experiences or traumas or habitual behaviour.

I’ve read about Bi-Polar.   I’ve read about Post Traumatic Stress Syndrome/Disorder and wondered whether that’s part of why/where I am, because it’s all about shock and loss as in that experienced by soldiers out in Vietnam. How killing for instance can have and leave a major imprint on your mind/psyche that can possibly affect you subconsciously long term.  My Father (terminal) literally died in my arms, 10 yrs ago, when I was helping him off the loo and back to his bedroom and bed. That was a huge shock/experience for me and the sound of his final sighing breath leaving his body and the expression on his face haunted me for a long time after.  Then 2010, I found my Mum dead on her bedroom floor - that was even worse. Losing your breasts is another major trauma as was my bruv hanging himself.   Sooo Naz, I really don’t know what would be best for me ? I attended a short course of post bereavement  talks, which were sooo illuminating in how massive grief can affect you in so many different and sometimes very weird ways. It explained certain things about my own behaviour and feelings.

I’d also thought about hypnotherapy. But whatever it is, I’ve got to feel it is constructive and obviously I’d rather not waste my money in my search.     Difficult ey ?

 

Yeah Annie, I hear you thanks. But I’ve had days where I can’t bear to think of having a “rest of a day”, never mind thinking a year in advance. I’ve spent so much time stuck in what I call “suicidal mode” where nothing matters any more because you don’t intend to be around.  This is all very very serious dark stuff I’m saying, and it’s just an indication of what depths I’ve been to. Now, please don’t worry because the last couple of weeks have been a bit better. But prior to that - if I told you I hadn’t had a shower or wash and not  washed my hair for 6 months, seldom brushed my teeth, seldom changed my clothes, sometimes stayed and slept in bed all day because I couldn’t face another empty day ahead and then got up 5-6 o’ clock and then stayed up through the night watching tv or on the computer and went to bed when it was breaking dawn outside - it may give you an idea . . … Have lived in this house 2 years now - moving with my Mums stuff as well as my own that’d had been stored in her double garage, and on my own to a different area, almost did me in - horrendous. Fell into bed, zonked for about 6 hours, then woke up with a huge sense of relief and started laughing at it all. But I only maintained that demeanor for a couple of months and only got on with very little in sorting the house out before  I slumped down again… I kept leaving it and escaping/avoiding!  AND it’s still pretty much in the same state. I’m laughing at myself here because it’s like something from that programme on “Hoarders”. Big part of the prob is that I don’t have many people to call on for help with this kinda stuff, plus I’m on my own so I get very very lonely (horribly mentally destructive), I don’t have a purpose, structure, partner, income blah blah.

 

However . . . . . Naz.  Our chat and you’re response to my post on the other thread about “What to do next” in the Life, work travel section of Living With and Beyond Breast Cancer,  thanking ME for some helpful suggestions to you ref alternative work oppos - struck or reawakened something in me. It was that feeling of being useful and I’ve always loved helping people hence me having been involved in an allied medical profession for 22 years. It gave me huge satisfaction and a real buzz to feel I’d helped, cured or made someone more comfey. I ironically may not be able to help myself, but it’s a big thing to me to help others when I can -I’m passionate about and compassionate to     ‘people’ fullstop.

BUT Naz, it was also your real, genuine warmth, just as I mentioned at the beginning of this epilogue. Call it an affinity. I could instantly relate to YOU and also your situation. Funny isn’t it.

Anyway, I’ve gone on faaar too long but briefly, I HAVE been tackling quite a few things and I’m not going to talk about them now. I’ve had a run of a few good days since last week - still some horrible ones too. I’m not yet confident in how long it may last. Am just trying to do a few things a day, even if it’s only one and that’s just cutting my fingernails, cleaning the loo or brushing my teeth! Incidentally, on the matter of my personal cleanliness, I DID have a big clean up of myself before I went to the hairdressers last week and have kept clean since on a daily basis.  Hey, that’s a big thing for me.  Never used to be like this. Established and ran a successful business 19 years for chrissake and kept on top of EVERYthing and took GRRREAT care of myself. I stopped caring about myself, plus, it’s almost like maybe I had  breakdown, an undiagnosed by a GP - dunno.

Anyway, if you’re still with me this far Naz, THANKS. Let me know how you’re doing. Forgot to answer your ? about my job application - another time soon cos I’ve already gone on too long.

 

Cheerio for now Delly xxx 

   

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Hi again Naz

Have just spent ages on the site link you gave me - really,really helpful. Thanks lovey xx

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Hello everyone and Naz

Yes Naz -Thank you. I am still feeling better and Yes, it does help and act as a kind of therapy for me to rabbit on here at all hours of the day and night, as long as I’m not boring anyone that is. All of which in the last 2-3 wks has helped. BC has had a massive negative impact to my personal confidence and career/business aspects of my life, particularly as a single person, and as is likely with anyone, hence my post. Much of which has left me with an anger. The rest of my other experiences have left me with the pain of grief.

Haven’t got much done for myself today, but did have a pleasant couple of hours with one of my neighbours down the road, Sheila, who I’ve nicknamed my “Hug” lady (see other post of 5/11 on Just Diag). Hadn’t seen her since August and had wondered if she was ok, cos last time I did she was getting over an episode of pleurasy. Didn’t know her from Adam, but I got chatting to her and her hubby simply because I made some complimentary remarks about how nice their front garden was looking!! and have always had a chat in passing since that. Gave me a hug last night - totally off the cuff,  just after I’d been reading about other people on the “Just Diagnosed and wanting to talk to . . .” talking about hugs and was feeling a bit lacking in human contact. Awwww, it was so touching and lovely - knocked my socks off in fact. Talk about insightful and an immediate affinity. Anyway I dropped off some info today that I’d promised which lead to me trying to help out with a computer prob she was having.  I have to say, I’ve found the people in Macc very very friendly (been here 2 yrs). But then so am I.

No Naz, I’ve avoided antidepressants because, when I’ve had them in the past, they’ve made me feel empty headed and vacuuous.

 

Your helpful web link enabled me to also access local therapists. There are the Psychotherapist AND the Psychologist routes to choose.  Both utilise various different methods, plus also some of the the same methods e.g CBT. Certain Psychologists “specialise” in CBT combined with whatever else they deem necessary. Bit of a minefield really. Feel I’m just gonna have to bite the bullet. But Yeh, I feel its all about being taught and armed with “tools” to better deal with your/my future and changing “habitual” ways of thinking because it’s now become so chronic (long standing) with me.

And Yeh, people keep suggesting voluntary work to me but it would be far better for me to concentrate on gaining “paid” employment because it would remove my concern about finances - know I would feel so much better with something coming in. But, hang on a sec, you are doing voluntary work WHILST you job hunt? What exactly are you DOING voluntary wise Naz ? and how did you get into it ?

 

Anyway - how are you?? Has any of all this talk and research into “therapy” sparked anything off for you?? Or are you looking into anything else??

Thanks again, I truely appreciate

Delly xxx

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Jill - Flippin 'eck, someone’s dealing you far more than your deserved share.  I am sooooooo sorry for your diag - you didn’t say what boob wise and I’m soooooo sorry to hear about your bruv. Hope he recovers soon. But I’m guessing you’re extremely bogged under with all this massive, major stuff, you haven’t even got time to stay. So we’ll see you when you’re ready. 

Until then, take good care sweetiepie. We’re not going anywhere and will do all we can to give you what you need and want.

This site has made a huge difference to me and I’m a big face to face person, not virtual. But it still does the trick through the ether somehow.

Dellydingdong xxx 

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Naz - mucho Taaaaa’s

Will look into your link. Yeh, voluntary work is all good and well if you’re retired or already working and it’s an extra to it, so can afford to do it. At the moment, I can’t/don’t want to afford time to any UNpaid work if I can help it. That’s not because I don’t ever want to, but you yourself sound to now have a lot of your time taken up voluntarily which is fine and good. But, only if you can afford to. I don’t live in a two person household, where if one’s not working, the other can still support.

I’ve sent you a short PM because BOTH my previous looooooong PM’s have been lost and I’ve now given up out of total frustration. Please just give me a call - far, far  bl**dy simpler !!! 

 

Naaaaa - Naz. I was NEVER left thinking "Jeez, what just happened there ref boobs. I wanted IMMEDIATE recon with 1st mast, because I knew myself well enough to know, that as a single person and proud of my bod, it would hit me hard WITHOUT. Didn’t happen and reasons why not are too complicated to go into. But would have to do without for a while. But bounced back reeeally well. To all you single mastectomiers, it makes a huge difference to still have ONE of your own boobs. It was losing the 2nd one 9 months later and again wanted but no immediate recon.and again, NOT being provided with recon that SMASHED me to bits.

I’ve spoken to and read about other women who’ve lost 2nd and thought/felt exactly the same way - GLAD they’ve/I’ve still got one, 

 

Sheila, my down the road “hug” lady is much older and married, and Yes, she and hubby Ed - lovely. Other new friend made last week, Heather, my age and so many weird coincidences kept coming up in our conversation. Anyway, she’s a local shop owner of beautiful cards, prints, pictures by local artists and lovely objects. I’m into arty-farty stuff so we’ll definitely be seeing each other again and hopefully will develop into a friendship cos we both remarked at how easy we found it to talk to each other. Plus she’s also on her own (painful divorce of 18 years), albeit with two late teenage boys at home and other older one living away. Loads of respect for anyone single handedly raising 3 boys on own - gutsy.

Job wise, I will always prefer to be self-employed - that’s mostly what I’ve been used to for 22 out of 27yrs working yrs (9 not + 5 yrs training). No didn’t hear back from recent application. But also think my email has a prob with settings. Receivd copy of email and app with “No Reply” in front, so something else

I need to check into before i can carry on with job apps.

Therapy wise - I’m looking into Acupuncture more seriously. It may help with keeping depression at bay + preventing hand prob from worsening than it is (Don’t think it can/will straighten out what’s already happened.

Disappointed to have lost 2 long laboured over typing messages to you - ne mind

Delly xx