Kip
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Registered: ‎27-04-2018

Re: Surgery May 2018

Michelle, what a shame about Ed Sheeran.. bloody chemo.. I was supposed to go away with my girlfriends for our annually break and had to cancel because of chemo!  Thanks for answering the query for me, I guess that covers me too.  I am on Tamoxifen for 10 years!! I did question why not 5 years and was told the new guidelines are 10 years???  Any thoughts.

I'm doing ok on Tamoxifen too, just hot flushes which I had before too, so good so far, although my aches could be because of it but I had them before I started so am assuming chemo related.

Kip

x

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Re: Surgery May 2018

Kip I am so envious I bought tickets for the family to see Ed Sheeran this year for my birthday but it turned out I was having chemo, I hadn’t planned for that! In the end we sold two tickets and my 2 girls went together. They said he was brilliant, you’ll have a great time!
I have just read your query on your chemo thread about menopause testing. I asked my onc if they would test me. I also haven’t had a period since Jan and I think you and I are the same age, but she said they like you to not have had a period for at least two years, she also said Tamoxifen is easier (less se’s) than the post menopause treatments so I’m better off with that. I assume I am staying on the Tamoxifen for full 5 years now as probably won’t have a period but due to Tamoxifen putting me into menopause. I hope that answers your question or helps?
I’m still not having se’s from Tamoxifen, other than the flushes which I actually started having when I was 45.
Have a good weekend x
Kip
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Posts: 898
Registered: ‎27-04-2018

Re: Surgery May 2018

Oh Michelle Pink sounds fab.  I am taking my daughter to see Ed Sheeran in August.  I'm sure by your Trek you will up and ready for it.   Its good to have something to focus on.

Feenix - 10 minutes hooping under my belt today.. need to get the joints moving!

Kip

x

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Re: Surgery May 2018

I’d always planned to take my girls to Wicked but I think I’ve missed that window so am taking them to see Pink in the summer. My new motto is don’t put things off! I hope your aches get better soon.
I’m not exactly fit enough for the trek at the moment I’m just hoping I will be feeling better soon to do some training! I am pleased I have signed up for it as it is giving me something positive to focus on.
There certainly is a lot going on in the world of politics Jean, I can see why you might get side tracked! And it was very cold today brrrr! X
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Re: Surgery May 2018

Kip .. don’t Google 😟.     By the time I got my head out of the politics yesterday I abandoned my walk... so lazy. Epsom salts should help your aches. 

Michelle ... you just have to laugh at the play you went to ... Wicked sounded a much safer bet.

Well done on your fund raising strategies. Ouch ... your skin sounds so sore.

 

It’s a bit chilly today ... will I get out for a walk ??? I’m watching politics again 😂 

xx

Kip
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Posts: 898
Registered: ‎27-04-2018

Re: Surgery May 2018

Hello Michelle, oh my gosh the play with Ruth Jones!!!!  Glad you managed to laugh about it!  I woukd love to take my daughter to Wicked she loves the music!  Am planning a trip for next year for her.

Your trek planning and fund raising is going well by the sounds of it.  With my current aches and pains i could undertake a sponsored "climb my stairs".. its a challenge in itself!! 

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Re: Surgery May 2018

Crikey feels like I’ve not posted for ages, a lot to catch up on!
Jean I like alistar McGowan too, he’s so clever! I don’t know how people do impressions we hav a family game called the accent game where we all say a sentence in a particular accent. It sounds perfect in my head but what comes out is completely different! The moving forward course sounds just what I’m looking for, quality info in a room of people who have also been through this hell. The next one here is February but I would miss one as I’m away on the trek then. You sound as though you are getting on ok with Letrozole although the stiff joints don’t sound pleasant. I suppose we have to accept that all medication causes SE’s.

CDC belated Happy Birthday 🎉 I hope you got totally spoilt! Your LGFB day sounds interesting! It’s a bit like having make up done on your wedding day, you look like someone completely different! 😂 I haven’t done one and I’m not sure I’ll bother, I have my hair and lashes back now and on the whole I’m happy with my make up! I’m please your feet are feeling almost normal, and hope your onc appointment today goes well.

Kip I don’t like to say it out loud but no horrible Tamoxifen SE’s yet 🤫 😂 I hope your aches and pains ease off soon. Don’t think the worse it’s sure to be the se from that nasty T.

Unfortunately my skin seems to be getting a little worse each day. I have been given some gel and non adhesive dressings but I’m looking forward to turning the corner and seeing some improvement.
It’s annoying because I can’t run at all as the sports bra would rub too much. Having said that I think I am pretty tired at the moment as I went for a little snooze yesterday and woke up 4 hours later! In my defence I have stupidly arranged lots of socials for this week. I had a wonderful afternoon tea with my dog walkers, it was relaxed and easy as always with cakes thrown in, what’s not to like?! On Tuesday I went to see a play starring Ruth Jones. It was supposed to be a comedy about a choir and I went with some choir friends. Imagine my surprise when Ruth Jones’s character was pretending to have breast cancer for the attention. My friends felt pretty awkward but I did say you have to laugh....
Last night I went to see Wicked which was fab and not a hint of BC anywhere! Tonight I’m going early to choir to catch the parents of the kids choir so I can sell tickets for our Christmas concert. It is a fundraiser for my Nepal Trek, so hopefully it will be a sell out! 😂 Our fundraising is going really well and my OH has got a couple of events organised in Jan. To hopefully motivate and inspire us OH and I are going to a talk called ‘the hard road to Everest’ on Friday. Not that we are doing Everest, I don’t think I’m quite up to that but hopefully it’ll be interesting and have some tips!
Anyway think I’ve wittered in enough, have a good day and wrap up warm! ❄️ Xx
Kip
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Posts: 898
Registered: ‎27-04-2018

Re: Surgery May 2018

Morning...

CDC - glad you got to the LGFB course even if you didn't exactly like the results.   I must admit I don't really wear foundation and powder etc, usually jsut some lippy and and a bit of eye shadow so felt a bit odd too.  Was really helpful to know how to draw on eyebrows though.  

Feenix - sounds like a good evening at the theatre, did you get your walk?

I've just ordered 5kg tub of Epsom Salts.. going to try that in the bath for the achey joints and back.   I did manage to sleep better last night, think I may have just been exhausted.  Hubby said I was snoring so must have slept!  Trying not to let my mind wander to "could it be bone cancer" stage... very difficult and have so far managed to avoid googling to much about it.  As the nurse thinks its probably chemo effects I must focus on that .. just wish it would bugger off!

Kip

xx

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Re: Surgery May 2018

Hi Kip. We saw Alistair McGowan and Jasper Carrott. It was ok..preferred Alistair McGowan. We saw Michael McIntyre beginning of the year and he was really good. Will have to have a look and see what’s next... might see what’s being beamed from London to local cinemas. It’s probably panto time now at theatres. Will be hoping you have little in the way of se’s with the rads. As rads/travelling can make you tired...you may sleep better and therefore not be disturbed by your aches and pains ... 👍 😊 Anyway, you’ll be on the last leg of treatment ... 

Clare ... at least I’ll be prepared if I ever get round to doing the LGFB.. hope I don’t end up looking like Baby Jane 😂  Good luck for your onc appointment tomorrow.

 

Sunny here so will be out for a walk ... it’ll be later as getting sucked into politics at the minute...certainly hotting up. Moving Forward course tomorrow. 

Xx

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Kip
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Posts: 898
Registered: ‎27-04-2018

Re: Surgery May 2018

Feenix - how was the theatre?  What did you see?

CDC - glad to hear the feet are getting better, such a relief.  My aches and pains are awful, hope you don't get those, its really disrupting my sleep as wake up feeling so stiff throughout the night.  Could also be a side effect of the Tamoxifen as that can cause muscle aches, although I had this before I started I think.   I did speak to my ONC nurse yesterday to see if there's anything I can do/take to help.  She said its most likely the Docetaxol chemo side effects as its quite common and really not a lot you can do but ride it out... grrrr.  She did however, recommend taking Zinc and Magnesium as she said the chemo knocks these out of your body and can cause the pains.  Also recommended upping potatsium (so lots of bananas).  I'm going to try these and see if that helps, also taking cod liver oil for joints too.   I feel like walking pharmacy these days.. wish I could have the old body back that didn't ache, pull, and look different.. in one weeks time I will be fried by the Rads too, hope that doesn't cause too many problems.  Can't face much more.

Kip

x

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Registered: ‎25-03-2018

Re: Surgery May 2018

Hope you have a lovely time at the theatre Jean, the cording sounds very unpleasant. Yours too Kip.

I did enjoy the LGFB to an extent, Met some lovely people and was intrigued to use make up is never tried before but I realise I’m just not a make up person and my skin has felt very heavy and uncomftaboe so I’m taking it all off before having a nap. Just hope it doesn’t cause a rash, Since being diagnosed with Bc I’ve discovered my skin is very sensitive. Oh well, along with the facial flushing I shall be glowing tomorrow!

My feet have really improved thank goodness. No longer feels like I’m walking on something. They feel almost normal. Just wonder if they’ll re-instate the 4 more cycles of weekly Paclitaxel I was originally due to have when I see the onc on Thursday.I rather hope not as I’ve been looking forward to a break in treatment.

Hope everyone has a restful, ache free evening xxx
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Re: Surgery May 2018

Hula Hoops rule ok Kip 👍 well done in spite of the aches and pains... keep moving 💃 🚶‍♀️ You’ll be doing more than me but I do pick it up a few times a day ... bite sized hooping rather than in one go...I’m gradually increasing the time I do it but it’s only 1-2 mins 3 times a day, but it’s better than nothing. How’s your cording? I had a burning palm for ages after last night cording massage..think I over extended arm and my shoulder joint was sore afterwards ..  OH said it was a sign of overstretched nerves. It eventually went but I was thinking “ carpal tunnel or lymphoedema” at the time 😥My arm has always felt ‘different’ since my first op .. maybe I’m just hyper aware of it now. I think the lymphoedema nurse is doing a session this week at the MF course ... I have questions ... a list.

Weather rubbish today.  Out to theatre tonight.... must remember to take a brolly ☔️ 

jean xx

 

Kip
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Posts: 898
Registered: ‎27-04-2018

Re: Surgery May 2018

Hi all,

Feenix you will be glad to hear I got the hoop out today.. really need to take myself in hand.. thinking the extra weight won't be helping these achey joints much.   Managed 10 minutes and did feel good to be moving again.  Still achey all over though and it wakes me up as I get really stiff.  Much better if I am moving although walking sometimes really hurts if I do any distance... just hoping it improves soon.  I feel 100 years old at the moment.  I did enjoy the cream tea the other day... delicious and lovely to be out with my friends and forgetting BC for a while.

Michelle - I'm doing ok on Tamoxifen too, keep wondering if the SEs suddenly start... having a hot flush or two during the night but not more than I had before I don't think.  Glad you are doing ok.

Kip

xx

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Re: Surgery May 2018

Belated Happy Birthday Clare. I’m sure you’ll find the LGFB course good. I’ve yet to go on one. The Moving Forward course is well worth going to and it’s definitely good to meet up with others. There’s also the Nicola Jane lady coming with bras etc the last week. I hope you get to have another chemo. I popped onto your June chemo thread and sounds as though your feet are improving which is good. So pleased your appointment at the Marsden is on the horizon and you’ll soon know what your plan is. Have a good night.

xx

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Re: Surgery May 2018

Hi everyone

Just catching up. Sorry about your skin issues Michelle it I hope the gel, dressings and cream help. Hope you had a lovely afternoon tea, You too Kip! I was meant to have one yesterday on my birthday trip to Brighton with my daughter and OH, but we were so full of ice-cream we couldn’t manage one!

Interesting to hear everyone has been getting so tired. I felt I was doing really well and managing ok without too much fatigue but I went for a lie down earlier and I suddenly felt like I’d been hit by a ton of bricks! Absolutely shattered and aching all over. Managed to have a nap but I think I’ll just have a very early night. I’ve got my LGFB course tomorrow. I’ve been in the waiting list for ages so I don’t want to miss it.

The moving forward course sounds really helpful Jean and it must be good to meet other women who have completed treatment.

I have an oncologist meeting on Thursday, Just waiting to hear if I’ll have one more chemo after all. I forgot they’d added a couple of cycles as I’ve been in a reduced dose. Psychologically I’d like to do one more as then I know I’ve done the equivalent of 3 T (my hospital wanted me to do 4) which seems to be standard for many hospitals.

I have my fist transfer meeting with the Marsden next Monday so I’ll be very interested to hear what they suggest in the way of surgery/radiotherapy etc....

Hope everyone has a restful evening.

Take Care xxx
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Re: Surgery May 2018

Aw  Michelle sorry your skin is breaking down. That’ll be really painful especially underneath your breast. That seems to be a common problem area and as you say it’s skin on skin. Hope you got some Mepitel, or other non stick base dressing, and that the gel/cream does the trick. I’m not surprised you are feeling so tired but hopefully you will be able to enjoy going out for tea.... nothing too strenuous eating cake !!! 

I started Letrozole in June. I had a little nausea feeling but that settled quickly. I changed from taking it at night to a morning so I might have felt queasy as I gradually changed the timing. Ive noticed a bit more stiffness in some joints but I’ve had cranky joints for some time. If I sit too long there are times when I feel really stiff and I straighten up slowly when getting up... might hobble a bit at first. Feels muscular. It reminds me of when I worked. I did 13 hour shifts, on the go most of that time, sometimes only one break and I did 3 shifts consecutively. I felt the same then when I got up on a morning after being on my feet for so long, as I sometimes do now 😂 The fatigue I had for a few days might be the Letrozole but I did do some long distance driving a few days before I felt it so might have been that too. My hair is much the same I think. I can get hair fall/thinning if my thyroxine levels aren’t right but I’ve not noticed more than normal so far. It did feel drier than usual but I use Lush shampo and conditioning bars and it’s not too bad. I’m post menopausal, had no major problems then and find I’m ok now. I hope you remain se free on Tamoxifen. 

Xx

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Re: Surgery May 2018

Hi Jean unfortunately my skin is breaking down with little burns on the skin on the underside of my breast, so the skin on skin gets quite painful. I’ve been up to the unit today and been given some gel, dressings and more cream. Afternoon tea seems very popular I’m going on one today. It’s been in the diary for a while but to be honest I feel very tired even though I was in bed at 8.30pm yesterday.
Glad you are getting over your tiredness. I love the description of treacle drag, I know exactly what you mean! Are you getting many SE’s from letrozole? How long have you been taking it for? I don’t seem to be having an SE’s from Tamoxifen as yet, fingers crossed x
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Re: Surgery May 2018

Hi Kip... hope you enjoyed your calorific intake yesterday 😊... it was chocolate for me.

Sounds as though you are doing well with your exercises. Have you been able to get in touch with your bcn about your cording yet? I popped onto your chemo thread.... your hair looks great. You must be well pleased. Fingers crossed re the Tamoxifen.

Clare ... hope you see surgeons soon at Marsden.

Michelle ... hope your skin is improving, although might that be a few weeks after rads as I’ve heard it can get worse before it gets better !! .... hope not though.

Sally... hope you’re doing ok.

 

Im well over the fatigue I had, and I’ve even had the hoop out. Walking without the treacle drag feeling coming over me is good. I really need to swim again even though it’s been some years... waiting for the Asda tankini top to be available and I can look at Nicola Jane gear next week. Lands End are supposed to be ok too.

xx

 

Kip
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Posts: 898
Registered: ‎27-04-2018

Re: Surgery May 2018

Hi Feenix ysa so far Tamoxifen going ok i am trying to just pop it in and forget about it too.  My arm stretches aee going ok but i wil see if someone can take a look just to check it all out and advise me as to what massage to do.

Its a beautiful day here and im going out for afternoin tea with some girl friend later so more calories for me!!!

Kip

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Re: Surgery May 2018

Hi Kip. My OH came with me to see the physio and was shown how to massage the cording. He can apply more pressure than I can. I do it at least twice a day, the extra stretching too as long as my back and shoulders arent protesting too much 😂 It’s good that you are managing to walk a bit. Do hope those aches and pains get better soon. Hopefully you’ll be ok on Tamoxifen... just keep on taking the tablets. I know Letrozole is different but I just take it without thinking about it. Although I know everything has side effects I’ve found them to be manageable, not too bad... although I did have a few days of fatigue lately which I put down to the tablet... blame it for everything 😂 

Clare ... did I see you may not be having chemo after today?

Michelle .. hope you’re doing ok and OH is back

Xx