Radiotherapy this winter 2016/17? Calling all winter warmers!

Hi and thank you dizzybee and everyone.I’d really prefer my rads about lunchtime so traffic in the mornings can be avoided and I’m better later on in the day.Waiting for the tattoo appt…wondering when that will be as it’s getting near Christmas.I don’t have too many preparations for Christmas…I live alone and go to my daughter’s and she does everything :)I don’t know how people are managing to work, you’re made of stronger stuff than me:) I gave up my morning job and my afternoon job is on hold till after rads.Will hopefully find enough people to take me…trying to keep it all as stress free as possible.Lovely to have you all to talk to.x

Thank you.appt was on the 7th possibly Christmas week?! Appointment with urology that week and Christmas do’s so that’s a busy week.lovely to meet you all x

Treeze, I completely agree about the work thing, I admire anyone trying to work at the same time as all this. Apart from the physical issues, I wouldn’t have been in any emotional state to cope. On a day to day basis I’m fine, but as soon as anything gets difficult I fall apart. But I don’t work anyway, which means I don’t have the guilt thing which comes with taking sick leave.

Going to your daughter’s for Christmas sounds like a good idea, you get to sit back and relax while she organises things, and you can chip in and help when you’re up to it.

Morning ladies

I’m soooooo glad it’s Saturday!!!  No travelling and stayed in bed until 8.30…bliss!

not feeling too bad today and I think these dressings have helped my nipple and it doesn’t feel quite as sore. I’ve reduced the amount of E45 I was putting on too so perhaps that’s helped also. All that rubbing was rather painful! My biggest issue I think now is the tiredness. I’m shattered. Not helped my the tamoxifen disturbed sleep I know so I think I need to investigate ways to sleep more soundly. 

one more normal rads on Monday and then 5 days of boosters left. Looking forward to getting through to the end now and beginning to recover again. 

Getting there ladies!!

happy Saturday to you all! Xxx

Just remembered something that came up when I first had surgery. I take 10mg of amitriptyline (very low dose) at night as I have trigeminal neuralgia. The ladies that were having trouble after lymph node surgery were prescribed this too. But it also has a brilliant side effect of giving you a fab nights sleep. You need to take it around 6 else you’ll be groggy the next day. But it’s non addictive and you don’t develop tolerance to it so the dose will stay the same. Plus if you don’t need it you don’t need to wean yourself off. Just wondered if it would help any of you at night.
As for work I have no choice. I would rather not have to although, like I said, it’s a fabulous distraction. I look back at the hideous photos when my skin died due to lack of blood supply and they said it would take about 8 months to heal which it did. I’ve had honey dressings, low pressure vacuum dressings and right at the end went bra less to get air to heal the last little bit. It’s like a different lifetime now though.
I have never cried over my diagnosis but I wish I could. I’m sure it would help. I’m an expert at hiding feelings and find myself getting really p***ed off with work colleagues who take time off with a sore throat. Then return 2 days later with no sign of anything. But I only have myself to blame as I could do the same. The thing is the powers that be at work fall over themselves to make sure they’re OK whereas those of us that don’t moan are largely ignored cos they know we’ll always be here. That said I do love my job. Can’t imagine doing anything else. Kids are a great leveller. I abandoned my headscarf when I went back in September after a week as kids are very accepting. It was hard at first but now my hair is about half an inch long they’re amazed at its return. They’re so funny in what they come out with ??

My son takes Amytriptiline for IBS, he’s also a fan of it. They tried everything to relieve his symptoms, he ended up in A &E several times with the pain, and Amytriptiline was like turning a switch off, it gave him his life back. I just wish they’d thought of it a couple of years earlier.

I take mirtazapine, an antidepressant you take at bedtime because it supposedly makes you sleepy. But I’m on the lowest dose, and so far it hasn’t been a cure for insomnia.

 

Bottyboo, my heart goes out to you, this has just been a sh***y time for you. Sometimes I could scream when people go all, “oh breast cancer, it isn’t anything much these days, you have the lump removed and you’re sorted, my friend/ neighbour had it a few years ago and they’re fine.” As if everyone has the same experience.

 

There’s a woman who sells at a craft fair who is completely bald, it must be alopecia because she’s been like it for years. But she has the most amazing tattoo going up the side of her neck and across her head, she looks great.

 

Dizzybee…know what you mean about peoples misconceptions of breast cancer…I was probably the same once, to be fair.Nobody knows about all the long term side effects and hormone blockers etc…they think its like getting over having your tonsils out or something-you’re completely back to normal af

afterwards.

Yes, you’re right, I was the same I shudder to think about what I’ve probably said. I think it’s because most of what I knew about breast cancer came off the TV, and the coverage of breast cancer is terrible in terms of giving the facts. You either get the brave 30 year old battles cancer for her young children story, or you get survivors doing the Moonwalk in decorated bras. Even when they do a news story on new research they get half the facts wrong, or its obvious they don’t understand what any of it means. So it’s no wonder people are confused.

It’s like when people tell you how well you look as if that means you must be all right now. Also as though they expect you to look like the stereotypical cancer patients portrayed in films etc
They don’t get the emotional turmoil going on in our heads, the turmoil we hide because even if we tried to explain it they wouldn’t get it xx

I guess if you’re on sick leave it must be even worse if people say how well you look. Even if they don’t mean it, you’d be thinking they’re implying you should be back at work. I guess the thing about doing chemo and losing your hair, it means you look like the stereotype for a while, so it’s like you have permission to say you’re not feeling great.

A few years ago there was a sports presenter on the BBC, Helen Rollason, she had stage IV bowel cancer and was on steroids, so she’d put weight on. She said everyone told her how well she was looking, the treatment was obviously working etc, it was as if you couldn’t be ill if you didn’t look it.

I don’t work but I was doing some volunteering and was on a couple of committees. I decided to resign from all of it because it got too much of a struggle, but I’ve had all the guilt issues about people covering the roles I used to do, and people asking when I’m going to start back.

Hi All,

I’ve just been catching up reading all your posts, and ladies I am in awe of your strength and resiliance! Bottybo - you must have had such a gruelling year and Beth123 I’m glad you’re feeling a bit more positive. I’m on 8 / 15 tomorrow and feel pretty grim at the thought of the week ahead, after 7 sessions my boob is sore inside and uncomfortable but the skin is fine just a bit tanned, but I feel really tired and a bit afraid that it could get worse. Which to be honest, Bottybo makes me feel ashamed to be such a woos when I think about what you have been through.

 

On the bright side I’ve just had a lovely early xmas with the family and baby granddaughter. And this evening there was the most beautiful sunset over this bit of East Anglia, all peach and purple colours behind the leafless old trees in our garden. That sort of thing just helps doesn’t it.

 

I retired last year from a challenging job I really enjoyed, but to be honest I just couldn’t keep up with whipper-snapper graduates any more. So while I felt that having BC so soon after was a bit hard I am so glad I don’t have to worry about bosses, colleagues and certificates. That would make things so much harder.

 

I am sitting here trying to write my xmas cards, although most of our friends know there are some close girl friends I am not routinely in touch with I still have to tell. I don’t know where to start - so I keep putting it off. How does… ‘2016 has been a geat year for us…oh and by the way I have breast cancer…’ sound?

Does any one else feel like this?

 

I’m signing off now, tea to cook. But whatever mountains you have to climb tomorrow on this journey I know you can handle it! I’m sending love, strength and smiles through the ether. Gillx

 

Can I ask whereabouts in east Anglia you are Gill? Had the sunset outside my window too! X

Hi Ladies,

We are all coping in our own way whether it’s staying in our surreal bubbles (that’s me by the way) or getting back out there. Only we know which is best for us. I feel for those of you who have had decisions forced upon you due to circumstances beyond your control. Planning appointment for me tomorrow; been extra down today can’t believe how emotionally and physically drained I still feel.

As to writing Christmas cards, I just added a little note to a few friends who I only contact at Christmas but know would want to know - kept it short and upbeat.

It’s good to see Gillie Anne that you enjoyed your early Christmas!

Think of me tomorrow in the ‘big polo’ - told my mum in law that I was going to have to go to a tattoo parlour!!

Keep smiling,

Jak x

There seems to be a few of us in East Anglia. I’m in Peterborough, although originally from a little village in Leicester, I’ve been here 16 years now. I’m at Peterborough City hospital and very thankful they now do rads here instead of having to trawl over to Addenbrookes. Where is everyone else from?
My boob feels sore inside tonight, very strange feeling. Like a sore throat but inside chest. Am I going a little doolally or does anyone else have this? Xx

I’m in Kings Lynn.Had no idea till I started this that we didn’t do rads here…going to Norwich rather than Cambridge.Wish it was closer

I’m in oxford - anyone else in the area? I’ve been very lucky as my hospital has a large oncology centre and so treatments have all been in one hospital. Having said that my count of who’s had a look at my boob now totals 34 different people so far!

Morning Ladies,

Have been in the 'big polo’and got my tattoos all very bizarre - felt quite vulnerable lying there defenceless but the staff were lovely even though one was about 12! (student). My rads are due to start on 4th Jan so I got my wish to have a break over Christmas. Hope you are all as well as you can be today.

Jak x

Hi Bottyboo

 

the feeling inside the boob is exactly what I felt - and still do. It feels so very tender and sore and any pressure is very uncomfortable. I’ve had 15 now and have 5 boosters left. I’m really pink now, and really tired too and so very itchy. I wish I was one of those that didn’t get any significant effects from it but unfortunately I’m not. I am dreading the 2 weeks after rads finish as its only then the side effects peak , but in my mind I’m aiming for the end of the year as every day after that will be another step towards recovery. 

 

HOWEVER if one more person tells me I look well, I am going to freak out! I have started saying that it’s not my face that’s the problem to those that are particularly clueless and then they really don’t know what to say which is much better! I look at myself in the mirror and I think I look exhausted, worried and fed up, and just a bit frazzled so why can’t other’s see this? I don’t think I look like me at the moment. It’ll come back I’m sure…unless I end up locked up after punching someone!! 

 

Take care of yourselves ladies

much love

beth xx

 

 

PS I have a list for my rads all at the same time 9:15 except first one which is at 4. Beth I know exactly what you mean about being told you look well!!! I just tell myself they mean in comparison to how I looked a couple of weeks ago x Jak