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The good and the bad

25 Mar 2018 17:52 in response to rileyroo

I'm going to ring my nurse and ask about what I can do about benefits thank you xx

The good and the bad

25 Mar 2018 17:57 in response to Nikki72

It's a bit of a shock isn't it. I've had outbreak of eczema in places like my eye lid of all places since diagnosis. I'm trying to focus on normal daily life until my op and take a day at a time. Mine is early too so am very positive for the future.

The good and the bad

25 Mar 2018 18:01 in response to Cornishpastie

I try not to think about it to much working keeps me busy hopefully I'll get more hrs but the last few days I've been so tired and just want to sleep and cry about the most simplest things x

The good and the bad

25 Mar 2018 18:52 in response to Nikki72

Hi Nikki,

I am so sorry to hear about your diagnosis and remember well how I felt at that time. It is a scary time when you don’t know what to expect, but let me assure you that it’s not nearly as bad as where your imagination is taking you. With regard to how you feel now, allow yourself to sleep as much as you need to. Also let yourself cry, as this is a good relief valve for stress.

I have had 2 bouts of breast cancer. The first was 8 years ago and I had a lumpectomy followed by Tamoxifen. I had the second bout a year later and had a double mastectomy followed by Letrozole. Fortunately you have caught things early and this should give you a better chance. I was stage 1 with no lymph node involvement both times.

Ask your cancer nurse if there is a facility at the hospital to help you with financial benefits. I have a group which I think is run by MacMillan in my hospital. It is helpful to have someone who knows the drill to fill out your forms with you. Having it done from a cancer perspective, it is useful to have it filled in by someone who fills out your form based on this. Your local Citizens’ Advice Bureau will also be able to help you out, but maybe not so much from a cancer viewpoint.

Some benefits are means tested, but others are not, so again advice on what you are likely to qualify for is helpful. If you want help, the sooner you apply the better, as it can take some time to get payments through.

I haven’t had radiotherapy, but I’m sure that you won’t receive this until your wound has healed. I was exhausted, even without this. I am self-employed so felt duty bound to get back to work ASAP. With hindsight, this was not a good idea, as I just felt more and more tired. I eventually developed side-effects to my medication and had to stop doing the day to day work, although I still manage the business.

Try not to torment yourself with the ‘why me’ question. We all do it, but it gets us nowhere. Instead, think of how lucky you are to have caught it early and look to the future with positivity.  Try to keep yourself distracted from the wait by keeping yourself as busy as possible meanwhile.

I hope that all goes well for you on 17th April. Please keep in touch and let us know how you get on. We are always here for you whenever you need us.

Kind regards,

Jolamine xx

The good and the bad

25 Mar 2018 18:56 in response to Nikki72

Ah I’m so glad u nd cornishpastie have connected:-) You are both practically running parallel to each other in this club no one expected to join. X

The good and the bad

25 Mar 2018 19:01 in response to Sandra123

I think it's easy talking to someone who has been or is going through the same has me and I can talk to strangers more than I can family they no know me personally but when I found this site and see what other ppl are going through or have been through you can relate thank you xx

The good and the bad

25 Mar 2018 19:05 in response to Cornishpastie

 

Hi Cornishpastie,

I am glad to see that on the face of things you are coping with all that is happening. It’s a real hit between the eyes when you are told your diagnosis and emotions are all over the place. Logic goes out the window and fear, anger, depression, tears, worry for family, etc, all creep in instead.

I have had 2 bouts of primary breast cancer. The first was 8 years ago when I had a lumpectomy followed by Tamoxifen.  A year later I found another lump and had a double mastectomy, followed by 6 years of Letrozole. Fortunately, both of mine were stage 1.

I hope that all goes well for you on 13th April and look forward to hearing how you get on after the operation.

Don’t forget that we are always here for you whenever you need us.

Kind regards,

Jolamine xx

The good and the bad

25 Mar 2018 20:59 in response to Jolamine

Did you suffer from fatigue at any time 

The good and the bad

26 Mar 2018 08:10 in response to Nikki72

Yes and still do!

The good and the bad

26 Mar 2018 08:25 in response to rileyroo

Can you take anything for it I'm new to all of this 

The good and the bad

26 Mar 2018 08:32 in response to Nikki72

Not really. It’s recovery, your mind and body takes a battering during treatment. When it’s done, if everything has gone according to plan, is when the recovery really begins as you’ll be flying solo, ie at home, no regular hospital trips. This is how it was for me anyway but every one goes through this in different ways. You might not have any major problems and sail through it. 

The good and the bad

26 Mar 2018 08:35 in response to rileyroo

I just fall asleep when I'm sat down when I finish work I'm so tired just want to sleep my op isn't till next month x

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26 Mar 2018 08:46 in response to Nikki72

It’s hard. It’s not just what’s happening to your body, it messes with you head as well. I found sleeping at night was a problem so was nodding off at strange times as well. 

The good and the bad

26 Mar 2018 09:18 in response to rileyroo

Ye I'm finding it hard to sleep on a night to then wake up weird times of the morning doesn't help when I'm on late shifts at work x

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26 Mar 2018 09:27 in response to Nikki72

Ouch

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26 Mar 2018 10:17 in response to Nikki72

Morning peeps 

re yr query about fatigue:-

I don’t know if it was because I was retired so work wasn’t hanging over my head ( and more importantly the financial implications that went with it) but I never felt particularly tired or fatigued. 

Don’t get me wrong when 1st diagnosed I felt like - well....,like someone had suddenly removed all the bones in my body.

I found this site the next day. Everyone was saying don’t google, don’t think ahead, live each day as it comes, keep busy..... they were right. I followed this this brilliant advice and....it really and I mean really helped. Pretty much there nd then thought ...ok let’s look this in the eye nd stare it down!

Everyone is different of course but for me this attitude to it “all” worked for me.

Each day when I went for my radiotherapy while in the waiting room I always chatted to the others sitting waiting for their turn ( only occasionally saw the same people). At some point I always asked how they were feeling. Some said tired, some a bit tired, some fine no tiredness at all ( this one was me too even by the end of treatment  I was... fine). So...everyone is different- it’s why we always say “well for me - or my experience was”. Here’s to your experience being as positive as possible me dear. We are here for the good days and of course the darker bad days. Just know however u feel we are here for you . X

 

The good and the bad

26 Mar 2018 18:16 in response to Chriss

Thanks Chrissie. Yes am just gearing myself up for it. Been told I will be in overnight and needing a week off work to recover so am working on that at the moment. Have pre OP booked in so it's just sit and wait now. Although I feel quite strong I've had an outbreak of eczema on my eyelid and torso of all places and have a stress muscular shoulder blade pain. I'm also not getting an uninterrupted nights sleep. But I think this is just the physical reaction to the shock of the initial diagnosis. Im actually surprising myself as I always thought I'd go to pieces if ever diagnosed with cancer as my mum passed from cancer (bladder) when I was 24. Onwards as they say. X

The good and the bad

26 Mar 2018 18:20 in response to Sandra123

Wow Sandra sounds like your body was kind to you after your op. Fingers crossed I will get through as well. I forgot to buy the lottery ticket lol. Will have to get one at the weekend. 

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26 Mar 2018 18:28 in response to Nikki72

Omg Nikki me too with the wanting to sleep all the time. I think it's my body's way of dealing with the initial shock which is stopping me getting an uninterrupted nights sleep (No wonder I'm tired lol). When I need to sleep I really need to sleep and have to lie down. Keeping occupied is a good idea. I've a full pamper day booked with my daughter's for Easter Monday at my daughter's house (she's a qualified beautician). I've already had a facial at claims...and am going yo book a spa day for after the op once healed. I had booked up to see Alexander oneil mid April but as it is 5 days after my op I am not hopeful about going. How about you. Are you planning any nice things to do in the lead up to your op and after?

The good and the bad

26 Mar 2018 18:37 in response to Jolamine

Hi Jolamine. Yes a shock it was. I'm over the shock now but it does still feel a bit like it's all happening to someone else. 

You've definately had a journey haven't you. That must have been quite awful getting through it for it to come back the following year. Eight years on you sound like a tower of strength. 

They are definately talking about hormone therapy foe me too as I'm ER+ fingers crossed nothing will be in the nodes and the margins will be clear. Just the radiotherapy then which I'm not too worried about as it's chemo that has worse side effects. 

I will keep you all updated after the 13th april. Have my pre op appointment on 3rd April and it speed by then. 

If I have any rough days in the lead up I will call on you lovely ladies as you are all living proof that this can be beaten physically and mentally x

The good and the bad

26 Mar 2018 18:46 in response to Cornishpastie

Ye I'm booked in for my nails this Friday coming hopefully do something easter Sunday I'm at the doctors tomorrow see why I'm so tired all the time might treat myself to a pamper day before my op my friend owns a beauty shop when I found out I had cancer I felt to pieces cryed for days still so have the odd cry when I'm feeling down my partner has been an absolute diamond he's the positive one the strong one xx

The good and the bad

26 Mar 2018 19:04 in response to Nikki72

I think it's completely understandable that you've cried. I saw my gp about the fatigue Friday. She's given me a short prescription but I've not filled it yet. Enjoy your nails hun x

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26 Mar 2018 19:25 in response to Cornishpastie

Sometimes I ask why me what have I done for this to happen to me the surgeon is giving me 2 weeks off work getting the lump removed and lymph nodes hopefully they get all of it x

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26 Mar 2018 21:12 in response to Cornishpastie

Evening me dear 

Wow u are being kept in overnight.... my hosp - we didn’t even get a bed! Went in and got an allocated chair lol. Walked to the op theatre but they did give us a wheelchair back... to our chairs lol. Nurse asked how I felt - said fine. Pop ur clothes on then and I’ll bring u some tea nd toast. Got dressed had tea nd toast - they took my BP then said t ring to b picked up to go home. When daughter text t say arrived nurse walked with me to the car nd waved me off. Happy  HappyHappy 

 I was at the shops ( again) 3 days after op nd bumped into one of the ladies who were in the same day case room as me. She too was doing really well nearly didn’t catch her cos she was walking at such a rate of knots ( she’s  70 yrs young:-)

Go u treating yourself... love it:-). I finished treatment in the nov then was Xmas so in the Jan went on a wks spa break.....bliss:-)

Nd just gotta b said...aren’t daughters just the best:-)

 

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26 Mar 2018 21:13 in response to Nikki72

I know how easy it is to start going down the why me road. Unfortunately that road leads to nowhere. You won't find an answer to that question. Im not saying it's easy and you have to deal with it your way. However If you dwell on it you will get completely overwhelmed by it. Plus you give it the power to dictate how you think and feel. I won't give it that power. It's here. I'm here. Who is stronger.....me! I will get through it. And I will get through it with style and laughter. You got this Nikki x

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26 Mar 2018 21:14 in response to Nikki72

Go u treating yourself u deserve it:-)

let us know how u get on at docs tomorrow... will b thinking of u x

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26 Mar 2018 21:20 in response to Sandra123

Wow Sandra. I love you got an allocated chair!!!! My daughter's have been amazing. One was with me on day I got results as my partners uncle was getting buried that day so I made him go. I'm learning fast that a positive attitude and treats to look forward to are the way to beat what this thing wants to do to your spirit. I just hope I keep this up and it's not just a big front with nothing to back it up lol x

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26 Mar 2018 21:36 in response to Sandra123

Thank you Sandra xx

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26 Mar 2018 21:42 in response to Cornishpastie

Yup chair... it’s tough up North u know lol.

Ah my daughter was with me when I got my results too... then other daughter took a wks leave to b with me after op ( which apparently meant she was chauffeur to the pub that wk... a lot lol).

You wring out with both hands every moment of joy to be had you and yours deserve it x

 

 

The good and the bad

27 Mar 2018 01:31 in response to Nikki72

 

Hi Nikki,

Oh boy did I feel tired!

I didn't sleep well at night.  Between night sweats and, my mind going into overdrive in the early hours of the morning, I felt as if I was walking in a trance. However I fell asleep on any form of transport, or when trying to watch TV.

Eight years on I am still tired, but not as totally exhausted as I used to be and can now manage a short journey without falling asleep. I still have to pace myself if I want to do anything on a particular day.

It's a drawback, but it's liveable with.

I wonder how others feel. Has the tiredness stayed with you, or did you eventually get rid of it?

Kind regards,

Jolamine xx