Mid-treatment Blues

[Jennifed]

Sounds like you are really making the best of a bad situation.  Well done you.  I have trouble planning anything at the moment especially if it is more than a couple of months ahead and as for next year - I just keep worrying about "what if?"  - how do you get over this? On the plus side, my rads finish on September 1st and we are planning a weekend away for our anniversary the following Friday.  I can just about handle that!

[familytree]

I plan on another holiday! Had loads of treats. Been off work since diagnosed so had trips to my sister's in Cornwall, Spain and a quick Spanish trip just before rads! I'm bloody skint but there's no pockets in shrouds lol ( that's a joke, don't think I'm dying just yet! ) my beautiful friends bought me weekends away, pamper packages and lots of lovely treats. I've been truly spoilt by them ( and family) crazy thing is I left my partner after 36 years last year ( free at last!) then this happens. We are friends and I think thank God I'm not living with him through this because he would have driven me nuts! ( More than usual) IIlike you want to do something big but font know what yet..it will come to me hopefully. Do you have plans? Btw I can't find the inspiring thread where survivors have posted..need a bit of that positive energy before sleep....did I say sleep!? 😉 x x

[Jennifed]

So true about it being a wake up call.  I keep thinking that I need to change something but I am not sure what that is yet.   I have similar feelings of guilt about my diagnosis relative to others but I am also worried about cancer in a more general way and like you find that there are days when I think that it's probably everywhere and that's how I am going to die.   One thing that these pages have taught me is that we all suffer similar emotions, thoughts and fears  and there is an odd comfort in this.   As you say the flood of support has to reduce at some stage but I have days when I regress badly and so this forum is a real life saver.  What are you planning for when you are through your rads? Jennifer's 

[Jennifed]

There is something about being by the sea that is life affirming and uplifting.  Have a great time. X 

[familytree]

Jenni I felt exactly the same although I was given the hormone blockers straight after the op whilst waiting for results. I'ts a whirlwind of emotions.. like living in limbo, everything stops. Then you have all the support and fuss from family and friends and of course the momentum of that has to stop which leaves you feeling a little lost. I got good results as in no chemo needed and margins clear etc. Just Letrozole and rads.I know that was the best scenario but it doesn't make me feel any better because I am virtually convinced it's in other parts of me with every ache and pain. Will we ever relax and believe? I also feel guilty feeling this way when I read other people's diagnisis which is far worse. I suppose nothing will be the same again but that doesn't mean it wont be better. Lets face it this is a wake up call for sure and it's only when you have had a scare like this that you truly face your mortality head on and realise how fragile life is. That has to be a good lesson. Surely we will live our lives in a more rewarding, appreciative way once we are over the shock? I intend to! 

Always love 

Lorna x

[marli]

I agree Jennifer. Really find the reducemyrisk.com advert upsetting - I just don't like the graphics. They keep showing up on my Facebook page too. Every novel or magazines has reference to BC too.

Glad you had a few days being able to forget about things. Hoping to have a couple of days by the coast in the next few weeks, just have a strange compulsion to be beside the sea.

Had the tattoos 6 years ago and they don't bother me, just look like dark freckles or tiny moles. x

[Jennifed]

Hi - managed to get away for the weekend and forget all about BC for three or four days.  Had the tattoos and as you say they don't amount too much - I think I can get over them.  What is bothering me is the constant adverts and news reports on cancer.   It seems like there is no escaping it - always something to bring you back to reality.  

[Jobey68]

Don't worry about the tattoos,it's just a teeny dot of ink and you really can hardly see them!

[Jobey68]

That a Good girl Jill ! 😜

[Jennifed]

Me neither - such a rubbish time with permanent physical markings to go with the mental scars. I've also just been notified the date of my bone scan ( so they can deal with the bone deterioration caused by the hormone tablets) It's never ending........

[Jill1998]

You seem to moving a lot quicker along the conveyor belt than me,I've been told will be another 4 weeks approximately til I start rads.Cant believe we get a tattoo to remember this by!!!

[Jennifed]

Well done. I've stuffed mine in a drawer I don't use much so that once I've taken it I no loner have to see them. I'm going for my CT scan and rad mark up tomorrow so I'm feeling abit down tonight. Still a lot to get through before we get back to normality - or should I say " the new reality".

[Jill1998]

Yes Mum,last night.

[Jobey68]

Jill just checking in between writing your raps you have found time to take your little white pill!? 😜

[marli]

Jill - you've done chemo. You can do this. lol I'm in for the wine Jennifer. x

[Jennifed]

No pain no gain - right?

[Jennifed]

Go on Gill - we'll all have a glass of wine to cheer you on......

[Jill1998]

Mañana... I promise..

[Jobey68]

Go on.... It's just a little pill....... 😜

[Jill1998]

Mañana...I will do it ...

[Jobey68]

Have you braved taking it yet Jill?! 😉

[marli]

Jennifer - if it is of any reassurance I did not have any menopausal symptoms whilst of Letrozol. Did have lots of aches and pains though as it made my arthritis worse. But no hot flushes. x

[Jill1998]

I have Tamoxifen for 10 years ,every day a reminder of cancer,but if it stops it coming back ......it's our new reality .

[Jennifed]

Absolutely! I had a major trauma taking my first letrozole tablet - just sat and looked at it and thought " five years - how the hell do you get back to normal and forget about this thing when you have to take a tablet every night. I am past the menopause and can't believe that I may well have to go through it again. S**t isn't a strong enough word for it. X

[Jill1998]

It is apparently very common. to have a crash after results my G.P told me , it is the realisation of the life changing thing that has just happened to us, relief that it could have been worse , but s**t I have still just had surgery for breast cancer.

[Jill1998]

Hi Jennifer, Sheena (Missmore )has started a thread surgery /results what happens next ,supporting each other through treatment ,if you want to talk on that thread too we are all at a similar stage.

[Jennifed]

Hi Jill - good to see your posts again in the next box ( i guess we will soon progress to the radiotheraphy box). As you can see from what I wrote my spirits really crashed after my treatment and my husband and daughters couldn't really understand. In fact everyone expected ne to crack the champayne open. How could they understand the shock of progressing from " I have breast cancer" to the box marked " former cancer sufferer"? It seems so unreal doesn't it? So many implications inherent in switching boxes. I might even start a new thread about it! Seriously tho' - hope you are having some up days too. I'm not too bad this week - my main relief is rampant internet shopping and then bursting into tears when I get the bill!!

[Jennifed]

Dear Marli - I have been away for a few days ( and back and forth to hospital as my daughter is having a difficult pregnancy - why does everything come at once?) and feel much better for it. Thanks for the good advice, especially the bit about taking everything one stage at a time. You have certainly been through it yourself and I send you lots of good wishes for successful treatment second time around. Jennifer x

[Jill1998]

Thanks Sparkle,it sounds like a common response.Relief things could have been a lot worse followed by realisation that it is not over yet,may never really be over and has changed your life forever.Im already having hot flushes and menopausal symptoms so wonder how it will pan out for me,will it make them worse or better?

[Sparkle-at-50]

Expected reactions to extraordinary events.

I read this somewhere and took a note of it as I feel it it helped me understand things. I too slumped after surgery/results. I'm now back at work full-time and moving forward. Taking Wockhardt Tamoxifen. Have a few hot flushes most evenings but managable and no more than friends the same age (early fifties).  Why do you never get a flush when you're cold??

Hugs

Sparkle  xxx 

[Jill1998]

Hi Jo,yes we have had a lot of other stressful things going on too in last couple of months ,I think the pause in all the stress is a trigger for a bit of a slump.Just got back from holiday and husband going back to work Tuesday so will be me the dog and mother in laws incontinent elderly Yorkie and grumpy teenager who rarely leaves bedroom!!!Maybe just need a bit if routine as everything has been chaos for weeks.

[Jobey68]

Hi Jill, sorry your still feel low, personally I found working a great help as I couldn't stand to be at home on my own with too much time to think, after a few weeks I felt ' normal' again, but I don't have a stressful job at all , it's a Cushy office one where I've been pandered too and well looked after so it's been easy for me to go in, I am on antidepressants which I'm sure keep me on an even keel although I've never taken them before so have no idea how they make you feel! I thankfully kept my high feeling after getting results but do have an odd blip now and then still, life is never going to be quite the same but we have had a disaster filled year so far throughout our family and we have all got to the point where we think come on then chuck more at us we can take it!! Cancer, Kidney transplant, death, loss of a baby, marriage break ups, the list is endless!!
Hopefully your doc will give you some happy pills, I intend to keep taking mine for as long as I can! Xxx Jo

[Jill1998]

Hi Joyce, I have a lovely G.P too and Im sure he will say the same as yours.It is difficult to describe the impact this has on you mentally,but I feel it has left me with no "resources" ie not able to cope with any additional stress.Feel like real life has been put on pause,think the gap in between surgery,results and radiotherapy gives too much time to think,as up til now it has been a whirlwind of appointments and procedures.Think Marli is right it is easy to get overwhelmed ,must just take one step at a time.

[joyce11]

Don't feel guilty about being off work no one except those of us that have gone or going through this can know how it feels. I have a very understanding GP who has said back to work when all over with - I too have quite a stressfuljob and work in the healthcare stting so not a goodenvironment anyway. The turmoil going on inside doesn't show and we are always thinking about the next appointment and the "what ifs" so not you feel detached from the real world.

[Jill1998]

Add me to the list.I was really high after getting my results ,but feel far from "normal", awaiting next stage(radiotherapy).Physically I am fine but don't feel mentally up to going back to work,feel detached from the real world...going to see G.P on Monday but almost feel a bit of a fraud,saying that how can I do a stressful job when I burst into tears when someone shouts at my dog???

[marli]

Hi Jennifer - sorry to hear that you are feeling a bit down after your surgery. You are over the worst bit BUT need to give yourself time to recover. It is still early days.

I had a mastectomy almost 3 weeks ago as the result of a recurrence of the BC dx in 2009' I have had the whole menu of treatments now, lumpectomy, chemo, radiotherapy, tamoxifen, letrozol, chemo (inc. Herceptin) mastectomy, exstemasane. There are a few bits I would give to anyone on this journey.

TAKE ONE STEP AT A TIME - try not to think beyond what you are going through now because that is when you start getting overwhelmed.

Don't assume that you will have the same side-effects as other people or that they will be as bad. Don't read the leaflet unless you have to because it only scares you more. Many ladies have no or very few side effects.

Be informed about your treatment when and as you need to be. Talk to your health care team.

Give yourself time to recover and rest when you are tired. If you are in a financial position to have time off work, do. Get yourself back to the best state of health you can.

Eat well and take a little exercise each day.

Socialise, even if it is just coffee with friends at home. When I had radiotherapy 3 of the 5 days a week a different friend took me and we always had coffee and cake and a good old chat.

Not always possible I know , but the old saying Stay Positive really is good advice. The sister on chemo ward 6 years ago told me that ladies with a positive attitude do better during their treatment and I have always followed her advice.

Hope this does not sound like preaching too much but it is all advice gathered along my journey which has really helped me.

But the best thing is the support and advice gleaned from this site. I still go out with ladies I met on here 6 years ago.

Hope you feel more settled soon - you are doing so well.  Marli xx

[missmore]

Hi Jennifer,  unfortunately it's always gonna be in the back of our minds, I have tried to get those closest to me to read the booklets and take a look at the website, it's a great source of information for them too

sweet dreams,  hopefully more than 4 hours in my case

sheena xx

[Jennifed]

Hi Sheena. I see that you are up late too!
I will keep talking here because everyone around me can't understand why I'm not celebrating being "clear" after surgery.
i am turning in now - sleep well.
Jennifer x

[Jennifed]

Dear feisty-flora - thanks for the pep talk, it's probably just what I need! Maybe it's me rather than other people that expects me to be back to normal after 4 weeks? I find the best medicine when I am down and panicking about the future is to read about all the marvellous ladies like your sister who have gone on to lead long and healthy lives. its so great that woman like you continue to watch these pages and give encouragement to those of us still going through treatment. Thank you.

[missmore]

Hey Jennifer,  glad you're feeling a tiny bit more positive x

I am struggling with some people who think it's all sorted after surgery,  jeez, that's the easy bit!

At least we're able to talk honestly and openly here

so keep talking about how you feel and don't bottle it up

love xxx

sheena

[Jennifed]

I hope you take after your Mum then! Inspirational ladies all over the place.

[Jennifed]

Hi Sheena - good for you in making your own choice about chemo. I was worried sick that I would need it, glad for about 2 minutes that I didn't and now I am worried sick about everything else. I've never been a worrier before all this happened - people keep saying that they are surprised that I have taken my diagnosis so hard and I am amazed by this. Cancer messes with your mind in a way nothing else does. i had arranged three months off work starting in June to go on holiday to the states (had to cancel that) and planned to return in September but the oncologist said I would need more time to recover from the rads. I don't have a date for the start of my rads yet but I think it will be around the middle of August. You will be first so let me know how it goes for you. I'm feeling slightly more up beat today - hope you are too? Take care, Jennifer

[Jennifed]

Oh I think I would be right up there with you catokitty, in second place! I've never panicked so much in my life since the events of the last six weeks. I guess some doctors are just better than others at telling you of the possible problems?

[feistyflora]

Hi Jennifed

Look, I'm a real glass half-full sort of person (am approaching my first annual check after having had op, chemo, rads) but when I was at your stage of treatment even I had the collywobbles and felt a bit panicky, it is quite normal.  Also it is natural to be a bit up and down if it is only four weeks after your op. All the worrying and 'what ifs' going through your mind mean that you are an intelligent person.  I was on tenterhooks for much of the time and felt as though the cancer was like a sword poised over my head but as time passed I found that it was impossible to live at that level of mental intensity - it is a bit like trying to keep your muscles permanently tensed, you have to relax them a bit eventually. Yes everyone does assume that you are soon back to normal (they don't mean any harm by it) but as we all know it is not quite as simple as that.  You are not negative, or miserable, or ungrateful and as for feeling ashamed, why on earth should you be?  Don't beat yourself up so much!  Don't try to 'pull yourself together' just take one thing at a time and things will get easier. Try not to anticipate problems - I haven't had any side-effects from my tablets - none!  PS I have an older sister who had a mastectomy years ago (which is why I always suspected I might get it too) she is nearly 80 and still going strong!  I hope this little 'pep-talk' has made you feel a bit better  xxx

[missmore]

Sent you a pm jenni

[missmore]

Oh, I'm also a left sider and worried about my poor wee heart! Dad died suddenly aged 52, im 53 and my mum has had 2 heart attacks and bypass she's 83 and as sprightly as ever tho x

[missmore]

Hi jenni

you sound exactly like me at the moment

I had surgery end of may, results should have been rads and tamoxifen but I was given a shock when the onc recommend that I have chemotherapy,  was given a week to decide whether or not to have it. I had started working phased return and then I just crumbled. I had managed to keep myself together up to the day I said no thank you to chemo.

I have been signed off work for 6 weeks by my lovely gp and go for my rads planning on 21july

I also know what you mean about some folks thinking,  "that's her all fixed now" because right now I feel very far from"fixed". One person actually said to me that if she'd been me she would have taken chemo happily and I was being selfish!! I left the macmillan chemotherapy booklet on her desk with FYI post it on it

let's try to keep each other's spirits up and get through this doldrums together

sheena xxx

[catokitty]

I think they have to tell you about side effects however remote  the possibility is. At my preop appointment I was freaked out by all the possible complications of mastectomy and spent a couple of weeks post op convinced I was going to have a DVT or pulmonary embolism. Needless to say I was fine.  Your husband is right - they wouldn't do it if everyone was going to have a heart attack.  I was also fixated on having a stroke as I had tinnitus for a few days after my op and was convinced this was the first sign. Nurse said I had worked myself into a state and it would stop. It did.   If panicking was an Olympic sport I would be on the rostrum. 

[Jennifed]

I had a day of panicking about my heart yesterday - thinking that if I had known it was going to age prematurely as a result of RADS I'd have had an elective masectomy. This morning I have moved more to your position of "whatever" - lets just get shut of the cancer. My Dad died of a heart attack quite young and I used to think it was a terrible way to go - no goodbyes, no preparation mentally or physically but after this, I think what a way to go! I'm going to chat to my BCN today to see what she can tell me. The heart side effects were presented to me as something that would definaetely happen but as my husband said, it's unlikely that they would give left siders lumpectomy ops if the result was that they died early of a heart attack. Let's hope so!

[Jobey68]

I can't believe how some oncologists seem to have no bed side manner, you would think that above all else they would be gentle and considerate no matter what news they were dishing out, mine was a lovely lady thankfully as have been all the medical team I've come in to contact with the past few months, even My GP who I've never even seen before has been a diamond, I know they have to give you the facts but there are ways of doing it, they get left hand siders to learn a breath holding technique normally to minimise the damage to your heart, mine was right side but I was told it could harm my ribs, liver etc but it was very rare,but I was just like whatever, as long as it stops the cancer coming back I'm fine with that! Xx