July 2017

You should also get PIP Michelle. It’s not means tested so won’t take into account your redundancy.

I’ve called my bc nurse about it and she’s been brilliant. She’s emailed my local Macmillan advisor for a home visit and also spoke to my oncologist.
I can’t say it’s not a bit depressing knowing I’ll probably never work again. I was looking forward to getting back to it so I understand how you feel.
We’ll just have to use our free time having lovely times instead. ?
And yes, we just cut our cloth. A little bit extra to do nice things is always a bonus though. ?
With a bit of luck you’ll get some lovely autumn sunshine will in Scotland. I love Northumberland too. Just what’s needed to blow the cobwebs away.
On that note; we’re going back Halloween weekend so looking forward to that. ?

Here’s to a great weekend for both of us. Xxx

Morning tatyana. Lovely to hear from you.

Great that you managed to get away. I love the dales. Keld is one of my favourite places ever. We used to camp there a lot when the children were young.
So pleased that your chemo seems to be working. ???
I know what you mean about other appointments slipping by thanks to bc appointments. I haven’t been to the dentist in just over a year. ?

Here’s hoping you’ll see the grandchildren soon and thank goodness for Facebook, even if it is just to see our loved ones having fun without us. ? xxxx

Tatanya hello lovely to hear from you i love Yorkshire too my Grandad was from Swaledale a proper Yorkshire man i haven’t been in such a long time you have reminded me of that!! Im pleased the SE are ok Tatanya just a pain your blood is playing up heres a blood dance ??? we haven’t been doing that much lately have we don’t blame you for having a little break from forum it sometimes does us good i find i like to check in on you all you are all never to far from my thoughts as you all helped me through as i hope i did too ?

You’re right Michelle, we have all helped each other. I’m trying to wean myself off the forums. I can get totally obsessed sometimes (especially now).

I’ll always check into this thread now and again though. Just in case one of us needs a friend who understands.
We’ve been through a lot together. I’ve said it before but I mean it; I feel as if I know everyone of our little group.
By the way; my grandad was also a Yorkshire man. Salt of the earth. ? xxx

Yes this group feels like a bunch of old friends who’ve been through a lot together, and I feel I can drift away for a while and come back and it still feels the same. I think it’s good to have a break sometimes and concentrate on other stuff, but it’s priceless to know that the love and support is still here. Big hugs to all the group, Yorkshire folk or not!

Hello ladies

Just checking in to say hello. Sounds like you are all getting on with life and enjoying holidays and grandchildren. Hugs to those of you dealing with secondaries and more treatments.

I’m chugging along with letrozole side effects including very sore right foot. Oncologist suggests I come off letrozole for four weeks and if that cures my side effects then go onto Tamoxifen. I’d rather stay with letrozole if I can as I think it has the best results and I really do not want a new set of side effects from tamoxifen. We’ll see. It’s just my foot that I can’t tolerate forever.
I’m off to east grinstead in September the talk about Diep recon ?.
Take care everyone xx

Hey Carole. Good to hear from you.
Isn’t it strange this right foot thing. ?
I’ve had to stop jogging. There’s no chance of me coming off letrozole so I suppose I’ll have to put up with it. I’m literally limping.
Maybe another brand might help. I’m on teva. Xxx

Hello lovely ladies, thanks for asking about me.

I’m okay, still having a million and one appointments while they determine how extensive the damage is. Had a radioactive bone scan, brain MRI and biopsy of my pelvis this week alone ? I’m shattered!

Treatment due to start in September although they’re talking about starting rads next week as I can hardly walk due to the pelvic tumour.

Was at a metal festival last weekend and spent most of it wheelchair bound. Had loads of fun and my friends all took turns wheeling me about. We figured out we could sneak beer into the arena if we put it under the cushion I was sat on. I was smuggling in 8 cans at a time ?

Regarding PIP, any of you secondary ladies should apply for it. I saw the benefits advisor at the Maggie centre and she liaised with my breast care nurse and they filled out a form which gets your claim fast tracked. She also got me a blue badge and a £500 Macmillan grant. Going to get her some flowers or chocolates, she’s been absolutely amazing.

Admittedly, I am struggling a lot at the moment. My husband has to help me dress and get in and out of the bath. We get taxis everywhere, I can’t even manage the walk to the bus stop. That’s really getting me down, and it scares me how fast my walking has deteriorated. I can deal with the cancer but the mobility issues are soul destroying ?

Hi missa.
Thanks for giving me a laugh this morning. Your wheelchair idea was brilliant. ???

What a week you’ve had. ? sending you a million positive vibes that you get some positive news out of these scans etc. Here’s hoping you get the rads asap and they zap these little b******s quick.
I’ve certainly heard of ladies not being able to walk and the rads getting them quickly back on their feet. ???
I’ve spoken to my bc nurse and she’s also been brilliant. She’s sorting out my PIP with Macmillan and trying to get me a poor diagnosis so I can get my life insurance. Isn’t it surreal that this is what I’m hoping for. ? although I’ve got absolutely no intention of going anywhere fast. We could really do with the money so I’m taking it with a pinch of salt.
Xxx

Oh Missa, I feel for you. I know what you mean about mobility although I’m not in your league at all. I can put up with the joint aches and pains but the foot pain really hinders mobility.
I do hope the rads work quickly and you’re back on your feet soon.

Angela my reflexologist said yesterday that my foot is a bit swollen with fluid where it hurts. She didn’t know why though. Lymph fluid? Inflammation?

Missa, lovely to hear from you. Sorry about your mobility issues, that’s a really tough one. I’ve got plenty of aches and pains and can’t walk as far as I used to (definitely not uphill!) but it’s nothing serious as yet. I do hope the radiotherapy gives you some of your freedom back, I know it can do this sometimes and you deserve some good luck.
Thanks for a great laugh, I’m picturing you and your mates extracting cans of lovely cold beer from the hidden recesses of your wheelchair. Well, if you’ve got to use the flipping thing, you might as well put it to good use!

Missa hi lovely i love the rebel in you using your chair to sneak in the cans ??? just to echo the others i hope the rads zap the piece if ? and give you some relief i hear they are good at that loving your positive attitude too missa but what a busy week you have had glad you got to your festival
Your husband is a ? he is definitely a keeper ?
My app has come through with neurosurgeon 2nd October so not to long to wait the pills they have put me on make me feel a bit spaced out but have definitely helped with the pain
The strangest thing about this is that i cant walk in a strange line i feel a little wobbly like if you are drunk and my arms and hands keep going numb ? such a weird sensation i had been blaming it on chemo thought it was the neuropathy getting worse!!!
Any enough of my moaning hope you ladies have a good weekend and Missa sending you a big virtual hug for next weeks rads ??
Carole great to see you are doing ok but sorry about your foot good luck with the recon app xxx July ladies

Missa just to also add i hope your scans are ok sending you lots of positive vibes and ? take care lovely xx

Hi Lovely Ladies.

I just thought I’d drop in & say Hi, and give everyone a huge hug & hand hold squeeze.

I know I don’t come on here very often now, but I do think of you all a lot & have a quick read to see how you are all getting on.  I am in awe of how some of you girls are coping with all that you are going through, I know there’s not much choice, but you are bloody amazing, my constant anxiety is hard enough for me, that & like Carole constant pain in my left foot which makes me walk with a limp, by the way Carole, the stand in Consultant from The Marsden (Greek man, couldn’t understand much) I saw a couple of weeks ago said “stop blaming the Letrozole” & basically told me to go & get on with my life!!! Not the reassurance I was looking for & never did get to discuss any symptoms I wanted to, so on I worry! 

I do hope the treatments you girls are getting work wonders, and without too many horrible side effects, I don’t read up on too much information, not good for me, but bits and pieces I have read they do seem to have things in the armoury nowadays for secondaries, so I’ve got everything crossed for you, together with op’s that things improve for you all and soon.

Daughter moved in with boyfriend, never did care much for him, they lasted 5 weeks & now she’s back home, my husband, son & myself had to move her & her furniture out in about 3 hours whilst he was at work, that was a fun day, not! Our son is about to move into his own flat, if it ever exchanges contracts, today apparently, been hearing that for 3 weeks!, something to do with “help to buy” & address confirmation?!?! My house & garage look like Big Yellow Storage, saves doing too much housework though!

I’m back at work 3 days a week now, got to say it does really help to keep me busy & stop the anxiety, don’t give up looking for work, ladies of our age are the hardest working & most reliable, so you never know, you might find something, but of course I know I live in the busy South & there is more work here, but good luck to those of you looking. 

Please look after yourselves, loads of love, luck and hugs, your wonderful attitudes will see you through girls, you are amazing, remember.

 

Kim xxx

Kim, lovely to hear from you! My goodness you have been having a hectic time. What a nightmare with your daughter, sounds like she’s MUCH better off without him.
It’s a shame that you didn’t get to discuss your symptoms properly, you have every right to talk things through with the so-called experts. They may know a lot about cancer treatments and drugs, but they sometimes seem to have very little understanding of what goes on in our brains and emotions.
It’s great that you are back at work, to have something “normal” to occupy you and no doubt give you all sorts of other things to worry about, because that’s what work does. And it’s what we do…we worry! Sending you lots of love and hugs, and for your family too.???

Hi Kim
Family keeping you busy then. Don’t like the sound of Stavros the consultant. He should try it. My oncologist is very nice but I do feel they lose interest in our side effects and just say “it’s the chemo/rads/letrozole. At least mine suggested a break from letrozole and maybe try tamoxifen. He said side effects shouldn’t be bad enough to
Change your life style. Hahahahahahahaha ???. Who’s he trying to kid?

Hi kimi good to hear from you the onc at the Marsden doesn’t really sound like he gets it he should have been a little more empathic you haven’t exactly just had a bout of fku!! To add although im not on hormone blocking drugs but do get that they will come with SE as most if not all do so he shouldn’t be so flippant
Good to hear that you are back at work i crave some normality atm take care and speak soon xxx

Good to hear from you Kimi.
It sounds like you’re living life full throttle again. ?
Our kids always keep us on our toes don’t they, doesn’t matter how old they are.
I spoke to my onco on Friday about my painful right foot. He just said it’s a very common side effect of letrozole and that I should start jogging again. I stopped as it was just too painful.
Apparently if I push past the pain and continue exercising it might improve. ?
Hope everyone is having a good weekend. ??

Hi Lovlies.

How are you all doing?

Did they manage to start your treatment Missa? Hope they’re getting it underway for you, goodness knows what mischief you & that wheelchair will get into if not, more smuggling! Seriously though, I hope you’re on “the road” again, need to get on with it for you.

You too, Mishy, Tatyana & Ftf, hope you’re all getting somewhere with treatments, claims etc, & good luck at EG Carole, you’ll be in good hands there, I’ll visit if you’re there longer enough! 

My foot is slightly improved, but still limping, & not really doing much exercise, maybe I need to do the push through pain thing, but I won’t be able to walk the next day!  that Onc from Marsden said it was nothing to do with meds, well, strange how a few of us are affected!

My son finally exchanged contracts on his new flat yesterday, & moves in in a couple of weeks on his 25th birthday, not impressed with that, but I think that’s a nice birthday present, trip to Ikea for me on Sunday.

Daughter back from girlie holiday to Majorca, had a fab time but bit low again, but she disappeared out last night quite chirpy so hopefully a date, not allowed to ask! Fingers crossed though, don’t need a 30 year old blocking the bathroom for too long.

My husband & I are off to Cornwall in a couple of weeks for a few days break, hopefully summer will return, I still have my Mum’s ashes to sort out, last year was busy!!! My Dad’s are in the Church in Tintagel, so she will be joining him. We’ll get that done soonest & hopefully then a few days of nice weather and chilling.

Work is very tiring, we’re a very busy sedation clinic & I’m doing extra days as we’re in process of training two new staff members, but stops the overthinking, just asleep on sofa by 7pm, but so’s the old man, so hey, that’s me, him & our elderly cat snoring & missing Eastenders!

Day off today & still in bed, I wake up feeling as though I’ve not been asleep, are you all still suffering with the tiredness, I did think it would start to be better by now, must get showered in a minute, going to look at this new flat and the supermarket calls, again!

Lots of love and luck

Still holding and squeezing hands together.

love Kim xxx

 

Hi Kimi you sound very busy!!! But great to hear you are doing well a Cornwall trip will be lovely going to have a cracking September according to the weather forecast im off to Scotland on 14th for 4 days Loch lomand hope my doc lets me go, i got a call yesterday from neuro he has brought my app forward wants to see me Saturday after looking atm my mri at least im going to know whats going on but ? about surgery promised myself i wouldn’t be doing that again unless it was bc recurrence related and i had to but its a have to situation with this too!!!
Angela how are things with new treatment hope you are feeling OK with it Missa how are you getting on im hoping things are improving for you with treatments Tatanya you too Carole
Hows you too good luck with the appointment for your diep x this sunshine is lovely after the rain for those of us not at work it means extra garden or day out time xx
Went to see mamma mia with daughter last night cried my eyes out its a hanky job near the end its a bit cheesy and at the start cringy in places but soon picked up pace it has a better story thsn the first one
Ladies for niw ???