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Surgery May 2018

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Re: Surgery May 2018

Kip ..... one done ✅ Saying you are a Trekkie might be apt considering the travelling involved to have rads !! Interesting about the follow up in Spain...good for early detection but being seen every 3 months means you don’t have much break away from it. I did read something about follow up after cancer diagnosis. It indicated that follow up should be longer and different cancers had individual optimum times. I can’t exactly remember what they were but something like Breast cancer is 5 years now but should be 8 years. If you are going to be on Tamoxifen for 10 years you’ll be followed up for that time but will you have mammograms also? There must surely be research ongoing about this you’d think. 

Michelle ... pleased things are improving.

Clare ... how are you doing today?

 

xx

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Re: Surgery May 2018

Well done Kip first one done. Your tabard sounds better than mine. I just had a hospital gown so was completely exposed! X
Kip Community Champion
Community Champion

Re: Surgery May 2018

Hi Linda, makes you wonder doesn't it.
Kip Community Champion
Community Champion

Re: Surgery May 2018

Hi All,

well first RT done, and not much to write home about yet.  Was weird just laying there whilst it whirred around me, kept expecting rays of light or something!   My gown is a blue tabard with velcro shoulders which they unhook on the side they need so that you are not all exposed.   Looks a bit Star Trek like though!  Not looking forward to the trek day after day but I will do it.

 

Kip

x

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Re: Surgery May 2018

The surgeon told me at the start reseatch has been done to show check ups should be annual. If I had had one June 2017 would they have found it then? It was 51 mm max on MRI after diagnosis in March. x
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Re: Surgery May 2018

Very interesting Kip, makes you wonder if it’s worth paying for a yearly scan dosent it? Strangely I have only met one person who has had BC, and she is 4 years clear.
Yes I got to take my gown home with me, so flattering! Especially the gap up the back! Good luck with Rads, I hope it all goes well and your skin isn’t too sore at the end. Mine is improving now, phew!
Hope you are doing ok Jean? Xx
Kip Community Champion
Community Champion

Re: Surgery May 2018

Oh CDC - that is sad news, at least she has you to help her through this, there is nothing like sharing with someone who has been there.  Its shocking how many people are affected by this crappy disease.. I'm not sure if its because we are in this circle that we hear more or its just increasing but I have heard of so many people with it.   At my husband's work alone, there have been 4 ladies diagnosed since my diagnosis in April.  Rant away Clare...

 

I thought I would share this piece of information with you all... I met up with a friend of my husband who now lives in Spain (been there 10 years or so).  6 years ago his mother-in-law (who lives with them in Spain) was diagnosed with bowel cancer.   She had all the crappy chemo etc and was then given the all clear.  BUT unlike here, in Spain once you have had a cancer diagnosis you are seen every 3 months for ever more, she was given regularl scans and tests etc and last year (6 years after her last diagnosis) she was found to have very early stage pancreatic cancer.  She has been again treated with chemo etc and is now all clear.  If she had been living in UK, her checks ups would have been much much less and the prognosis for her pancreatic cancer would have been very different.  Lucky for her she lives there and it was caught very early on.    Makes you think doesn't it. 

 

Sorry everyone didn't mean to be depressing... got to get my pysched up for the first RADS session today.  Must remember to take my tabard.. very fetching.  Does everyone get to take there's home with them?

Kip

xx

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Re: Surgery May 2018

Hi CDC, sorry to hear about your poor friend, it sounds like she will be getting good treatment, even though we all know it is horrible hopefully it will have the desired effect. Thinking of you xx
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Re: Surgery May 2018

Aw Clare, sorry that you have had such upsetting news about your friend being diagnosed.... someone else close to you. 

Sending hugs 

Jean xx

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Re: Surgery May 2018

Can’t stop crying- I’ve just heard from my dear, dear friend that she has aggressive breast cancer and will start chemo in two weeks. We met at university when she was studying English and we became very close friends. I’m so utterly gutted! She’s German and tells me that in Germany she was offered a mammogram and ultrasounds because of dense tissue. This f*****ing disease! I feel so sad but also so angry that it is affecting so many people I know and love. Sorry I just know you will understand xx
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Re: Surgery May 2018

Michelle ... let it all out,,, it’ll do you good and having counselling will help you along. It seems that’s it’s ‘afterwards’ the emotions can be overwhelming at times. As rads keep on ‘working’ after the end of treatment it’s not surprising your skin  has broken again. Good sign that skin  is healing from the original breakdown so it bodes well for being healed in a couple of weeks.

Kip .... pleased the Epsom salts are doing good and that your cording is improving. Wishing you all the best for the start of your Rads tomorrow.

Clare ... have to confess Im finding politics really interesting ... watching PMQ’s as I type 😂 

So pleased your surgical  appointment was positive. Sounds like they are a good place for Diep as they do the op regularly. I’m sure you’ll get good help, input, regarding your decision when you see the plastics team next week. Sorry to hear your cousin needs to have a mastectomy but obviously the best way forward for her.... not easy though but then nothing is in relation to BC. It’s something we have to get our heads around best we can, get treated for and then recover.... in all ways. 

 

Dull and damp here  ☔️ 

Out tonight and OH has volunteered me to cook something to take. Experimental cooking beckons 😈 

 

Kip Community Champion
Community Champion

Re: Surgery May 2018

Hello everyone.  

Cdc so glad you feel happier having been seen at the Marsden and at least you now have more options for recon once the mx is done, what do you fancy?  I have plenty in all areas if you need a donor!! At least you can have a break from all this over Christmas.  Your poor cousin too?  Cant believe how many people i have spoken to recently who have or know of someone with this.  I am impressed you see a counsellor regularly, thats a good thing to do, perhaps i should too, i think after christmas k will need some help.  

Michelle your poor skin sounds painful although there are some benefits to having numb amrpits.

Im still suffering aches and pains so mow off to have an epsom soak again before sitting in pjs jn front the fire. Its very windy and raining here.  

Feenix my cording is gettingbetter thank you, im stretchjng, massaging and moisturising a lot and movement is gettjng better juat not in my knees and hips!

Kip

Xx

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Re: Surgery May 2018

Just catching up with everyone. Sounds like we're all feeling rather emotional. Jean I think you may well be right that it's something to do with the time of year. Lovely memory of your Mum singing along to Take That but I can understand the tears. Music can be so especially poignant when its associated with those we love. I think we probably just have to let the tears flow.

I'm not surprised you're irritable and finding it hard to sleep if you've been keeping up with politics! I definitely need to stay off my iPad- I always look up the news or read comments on Facebook and get so wound up!

Michelle I do hope your skin clears up in the next couple of weeks. I'm glad you're seeing the psychologist. I'm trying hard to look after my mental health as well as my physical health and seeing my therapist every week certainly helps me cope with everything that is going on. Hope you can get the support you need.

On a positive note my appointment at the Royal Marsden was really encouraging. I saw the same consultant but he was apologetic about confusing me at our last meeting and explained he just hadn't been sent enough information. He has since spoken with the surgeon who did my original operations- they used to work together! We are all on the same page now. I will definitely need a mastectomy on the right and, all things considered, it is safer for me to have the left one removed too. I have such a significant family history. I have more options for reconstructions now I'm under the Marsden. They do multiple tummy DIEPs a day but also offer the TUG procedure- using thighs or buttocks! I will speak with the plastics team next week to see which they recommend.
We decided as I won't be having surgery till late January I should have my PICC line out. Thankfully it was painless and I'll be able to have a deep bath for the first time in months in a day or two. I really cannot wait. I'm making sure I have some Epsom salts ready too Kip. Glad your bath was relaxing and you slept better. Just hope your aches and pains are lessening.

Good luck with the rads.

I found out today that my cousin will also be having a mastectomy despite a WLE and two re-excisions. Bl**dy BC- really has been putting us all though the wringer emotionally and physically.

Take Care and Best Wishes everyone xx
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Re: Surgery May 2018

My skin is still breaking up Jean. I went back to Velindre today again for more gel and dressings. The areas that were first to break seem to be getting better, although my under arm is red raw. The plus side of that is I can’t feel anything under my arm because of surgery! The nurse thinks it should be better in about 2 weeks which is a date for me to focus on.
I feel so emotional at the moment. I had a chat with a friend yesterday and cried, cried on my walk this morning and cried at lunch with a friend today. It seems the floodgates are open. I have got an appointment with with the clinical psychologist on 11th so hopefully I might get some counselling. I just can see where I am going from here. X
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Re: Surgery May 2018

Kip ... Pleased the Epsom salts at least helped with your heavy aching legs and you had a better sleep.. Did you ever get your cording seen? ... hopefully it improved. Clare ... hope your Marsden appointment went ok yesterday. Michelle ... hows your skin doing? I’ve had a couple of ‘irritable’ days but I think it’s because I’m feeling tired .. not slept as well last couple of nights ... no iPad tonight !!! Xx
Kip Community Champion
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Re: Surgery May 2018

Had a lovely soak Feenix, and although I still ache today, I think it did help with relaxing them in bed, slept much better without the restless heavy legs.     Still have the back issue though.

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Re: Surgery May 2018

Hi Kip ...  hope your soak tonight helps .... you could do without sciatica on top of everything. Although there are many who say rads are ‘easy’ you’re still having a treatment and it’s an unknown experience. Hopefully you will get through them ok. It’s also getting you to the end of active treatment... won’t be long before you’re ringing that bell.

xx

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Re: Surgery May 2018

Hi Feenix, aches and pains still here but j think it may be sciatica as well as the usual achey legs... Seems to fit the symptoms.  I havent tried the epsom salts yet but am planningna big soak tonight.. ill report back.  Got a delivery  of a 2kg tub yesterday!!  Sorry to heaur uouhad tears when thinking sbout your mum, j get emotiinal very easy these days.

CDC your daughter sounds very busy, nice she has a good interest outside ariana grande!  Yes Tamoxifen so far not bad, occasional hot sweats but nothjng major and the aches and pains which the nurse thinks are from chemo, and rhw abovementioned possible sciata.  

Cant believe k start rads this week, not sure how j feel really?  Apprehensive i think.  Im sure it will be ok, at least i wont get a lardy mouth!

Kip

Xx

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Re: Surgery May 2018

Pleased you’ve got something booked for next year Kip ....  sounds as though you and your daughter will enjoy that gig... you too Michelle.  Well done on doing 10 minutes of hooping... I’m very hit and miss with it. I have been out walking though. How’s the Epsom salts doing?

Michelle .. hope your skin is showing some improvement.

Clare ... Fab that you’ve finished chemo 🔔 🔔 🔔 ... you’ll be so relieved. You can recover in readiness for Christmas, although sounds as though you’ve got a busy time ahead., then onwards to surgery. I do hope your appointment on Monday goes well.

Youve certainly got lots of poignant memories relating to your dad, especially so around this time of the year coming up. I’ve been thinking about my mam, it would have been her birthday tomorrow. She loved Take That and they were on tv last night singing a song she really liked, and would sing along to ...  it brought back memories and I did have a few tears which was unusual as thinking about my mam usually puts a smile on my face as I always think of all the times we laughed, sang and were just together. Must be the affect of this year.

 

I will definitely be out walking tomorrow ... note to self ➡️ housework 🧹 ... I’ll be watching politics again so may get distracted 😮  😂 

xx

 

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Re: Surgery May 2018

Hi all

How is everyone today? Apart from my flushed face which I always get for 24 hours after a cycle of Paclitaxel, I’m feeling great! Chemo is over - phew! I do have the hot flushes and mine started up when I initially had docetaxel. I’ve also on,y had one period since the start of chemo in June. I’m 51 now so I imagine it’s tipped me into menopause. I had regular periods beforehand so I was told I’d go on to tamoxifen for 10 years. Sounds like you are doing ok on it apart from some aches and pains Kip. Is that a fair assessment? You too Michelle. I’m exoecting the hot flushes to last. Just trying to laugh them off at the minute but they really annoy me! Sorry you missed the Ed Sheehan Michelle but great you’re thinking ahead and off to see Pink in the Summer, I expect it won’t be long before my daughter is wanting to go to concerts. She’s obsessed with an awful American kids show which stars Arianna Grande. She turned 10 in October so we’re heading into tweenage! Ed Sheehan will be fun Kip. It’s encouraging to think that next Summer we will hopefully all be out the other side (apart from the hormone therapy and/or herceptim for those needing it). How is your skin at the moment Michelle? Hope you’ve found something to soothe it. OMG the Ruth Jones play sounds confronting! Glad your were able to laugh it off.

Have you managed to get out for a walk this weekend Jean? The weather is very dull here but I’m trying to up my walking although we live in a very polluted area of London so it’s probably not the healthiest environment to be walking in! Probably healthier than sitting inside and watching the news though - the political situation currently makes my blood boil!

I’m trying to get ahead and getting organised for Christmas. it’s so manic - my daughter sings in five choirs and we seem to have concerts every weekend till the big day now! Rather stressful but I’m determined that this will be a fun festive time for all the family. Last year was the 1st Anniversary of my Dad’s death so it was understandably difficult especially for my Mum, He was in hospital for a couple of weeks in December 2016 including for his 88th birthday on the 20th and Christmas Day, So glad we managed to get him in to a hospice for his last few days, He passed away on Dec 30th. I think the Christmas period will always be rather poignant. Sorry that’s probably not relevant to anyone except me! Just been thinking about him today.

Sending my very best wishes to everyone xxx
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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 Community Champion
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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 Community Champion
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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
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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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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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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 Community Champion
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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

Member

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

Member

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 Community Champion
Community Champion

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

Member

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

Kip Community Champion
Community Champion

Re: Surgery May 2018

Hi Feenix, my cording is definatley bigger than the one I had with the MX but I have been massaging it and stretching my arm out bur come Monday I think I'll be on the phone again. 

The course sounds really helpful, I am definately going to try to get on that for next year once treatment is done.  I like the sound of the non-slimming refrreshments...Smiley Very Happy  and the bra lady will be very helpful. 

I am still full of aches and pains from the chemo but managing to walk a bit but it does feel like I've done a marathon at the end of it.   I've had 2 days of Tamoxifen too, and so far so good, no more hot sweats that I have had but of course it could all build up and next week .... WHAM... could be on here moaning!

Have a good weekend..

Kip

xx

Member

Re: Surgery May 2018

Kip ... sorry to hear you’ve got cording again. Mine is the thick cording...was referred to physio.... still doing stretching exercises and massage ... still there 😨 

 

I went to the first session of the Moving Forward course. It’s only 3 hours once a week over 3 weeks. I didn’t count but there was at least a dozen of us there. Just a nice sized group, each different, able to chat to each other. Today, after introduction, statistics etc,  looked at self checks (specialist nurses in), exercise (someone in from local well being programme/local leisure centres), what’s available around the area in that regard. I’ve no excuse for not doing anything plus now know where there’s more Tai Chi available !! Info leaflets available. Local support leaflet too which will be helpful. Refreshments available ... nothing slimming 😂 Got a Palmers little gift set today and there were vouchers for 20% off Dorothy Perkins. 

The next sessions will have a lympodema nurse (for whom I have questions) , psychologist and the last week Nicola Jane lady will attend, can be measured, will have bras and swimwear to look at and buy with some discount. Look forward to that 😃   It’s certainly worth doing. 

 

Im not so tired today which I’m pleased about. I may have had a bit of fatigue (from Letrozole?) as I noticed when out walking it gradually got like I was walking through treacle after a while. I was much better yesterday when I was out walking so I’m definitely on an upward trend.

 

Xxx

 

 

Member

Re: Surgery May 2018

Thanks Helena, I love the bell, although it’s a little larger than the one I rang!

Kip that’s a pain getting cording again, I haven’t had that although I have heard you can get it at any time. I’m quite squeamish and the thought of pinging it makes my tummy turn! I hope you can get it sorted it does feel like one thing after another doesn't it. My skin is sore and I am going bra less but you might not be as bad as I think you’re having 15 sessions? I had to have a booster week as I didn’t have the mastectomy in the end. My skin didn’t start to get sore until 14, so fingers crossed for you.
How funny we are Tamoxifen twins! I took mine this morning and nothing yet! Although maybe I should check in the mirror for sprouting hairs! Typically I haven’t had flushes the last couple of weeks for the first time in a while so I am expecting them back any time now! We will have to compare SE progress! X
Kip Community Champion
Community Champion

Re: Surgery May 2018

Ding Dong Michelle.. well done reaching the end of Rads!!   I started Tamoxifen last night, had to get myself psyched up to take it.  Decided on bed time to begin with.  So far ok, off to sleep fine, but woke up in the night (but I have been in the last few months anyway).. had one hot sweat but no more than I was having usually. Feel fine this morning. just waiting to see if it builds up and then hits... I'll let you know.

 

I think I now have some cording under my armpit, the seroma has all but gone now but this has reared its ugly head.  Am trying to ping it like I was told last time but this one seems a lot thicker.   Will have another go if not will need to ring the BCN and see what they suggest.  Just one thing after another isn't it.

 

Kip

 

Community Champion

Re: Surgery May 2018

Michelle

 

Ringing the bell for you tonight, well done on completing your rads xxx

 

Helena

 

ringing bells.gif

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Re: Surgery May 2018

Radiotherapy tick! I rang the bell lots!!
All done thank goodness and better than yesterday.
Onwards and upwards.

Sounds like you have lots of positive plans Jean, that’s what I need to do now rads are out the way. Good luck tomorrow with the moving forward course x

Member

Re: Surgery May 2018

 Goodness..I feel as though I’ve been away from here for weeks

 

Kip .... interesting what you said about FB and the number of people dwindling after commenting ... just so normal though.... and about your friend too. So great you’ve had her support but not so great about the reason...so wish it could be different in that respect.  I’m only just going back onto my usual FB account. Pleased you’re going to get rads out of the way before Christmas. Getting near the end of active treatment certainly emotional. Pleased you can access extra ‘help’ when you’re finished treatment.  I know you have Tamoxifen for 10 years ... have you decided when you’ll take them... morning or night? Has your seroma ‘left the armpit’ yet? Being in limbo means you can do what you want without appointments in the way ... enjoy a break. Keep busy, have treats and try and keep the mind gremlins at bay. 

Clare ... I’ve certainly not been given any leaflets and didn’t realise it’s classed as an interval cancer... nothing in any correspondence saying such either. I hope you’re managing to keep off your feet as much as possible. Pleased to hear you have been transferred to the Marsden for your surgery. 

Michelle... pleased you had a lovely catchup at the weekend. Wise words about friends/people.

Sorry to hear you had a rubbishy rads session yesterday but hopefully today’s has been better...and of course it’s your last one .. hooray... hope the bell is still attached to the wall after you rang it 🔔 🔔 💪 💪 ❣ ❣ ... big celebration when OH is back ? 🎉 🎊 🥂 ... hope your tiredness isn’t too debilitating and your skin has held up. Hopefully it won’t be long before you’re out there running, training for your trek. Be gentle with yourself on finishing treatment.

 

Ive been feeling extra tired for a few days or so...been nodding off on an afternoon and that’s so not like me, and just ‘can’t be bothered’ ... and getting ratty at times.  Reckon I’m starting to hibernate, it’s the letrozole effect or perhaps my thyroxine levels. Haven’t had the hoop out at all and I could do with all the help I can get ..yikes... especially as I’ve had twirls and shortcake snacks the past couple of days!!! Determined to get motivated so earlier to bed and lights out after an hours reading, increase activity and keep occupied. Need some direction so looking for voluntary work, course to do etc. May go to FF meet-up and local BC support group.

First moving forward session tomorrow. Will let you know how it is. 

Well... got to move and get out walking again

hugs xx

 

Member

Re: Surgery May 2018

Kip glad your planning session went well, sorry to hear you got upset whilst there. It’s odd how it just creeps up on you isn’t it? I’m sure in time we will be super strong again. I have also picked up my Tamoxifen and I start taking it on Thursday. I know you have been debating morning or night to take it and have decided night. I’ve been recommended to take it in the morning, I can’t remember why! So we can compare se’s! I know it is odd getting so worked up about taking a tablet after all we have been through but I feel the same! Try to enjoy you time in limbo!

CDC I’m glad my message helped I think it is all about keeping perspective but that is so much easier said than done! The last thing I am going to say on friends is this... I have come to the conclusion that most people don’t actually change their behaviour. So although we feel that this devastating thing has happened to us and it completely consumes our lives it hasn’t ‘happened’ to other people. Their lives continue on as normal. I have found if a friend is the type to ring regularly then they continue to but if they are the type to be in contact infrequently then that is how they continue, in general people don’t change their behaviour but you do get a few gems who are very thoughtful and this comes to the fore or those who have experience of our situation and those are the ones who know what to say. I’ll shut up about this now!!!

How are things with you Jean? Are you back hooping? I hope to be back running in a couple of weeks. Our fundraising is going really well for the trek but I need to improve my fitness before I’ll be happy going!

I had a horrible rad session yesterday, they couldn’t line me up so I must of been lying there with my arm up for almost half an hour. It was painful but also I felt so undignified lying there with my boobs out being poked and prodded, and so vulnerable and out of control. To top it off tears started streaming down my face and I felt embarrassed as I got up and left.
Today is the last one, hopefully it will go much more smoothly than yesterday. I have a couple of my dog walking friends who have been so supportive through all of this coming to ring the bell with me. My OH is away at the moment so that will probably be the extent of my celebrations!

I hope everyone has a good day xx

Kip Community Champion
Community Champion

Re: Surgery May 2018

Hi everyone,

CDC - my masectomy site is not too numb, just slightly across the middle where the scar is.  The back of my arm on that side was and still is numb though.  I never had any problems with underarm numbness until the ANC, the whole armpit is numb, tried putting deodorant on this morning and couldn't feel if I was doing it or not.  I have heard that the numbness can slowly fade with time but not altogether.  Another permanent reminder of whats happened hey!  Glad you have got the Marsden, thats a good thing and hopefully  you'll get some answers.   My tingley thumb is almost back to normal now, and I had last chemo on 23 Sept so fingers crossed your feet will be the same, I get some pins and needles now and again but definately not as bad.  Must say though I still have achy legs, bottom, lower back etc from the chemo I think, terrible when I try to bend down and straighten up.

I've just had the planning session for Rads, will be starting on 29th November.  Plannign was fine, got the tattoos too.  THe nurse was lovely, I actually starting crying in the room with her beforehand as have just found the last few days really emotional and had lots of "what ifs".  She was very understanding and said a lot of ladies find they feel this way when it gets to Rads as its another treatment and also almost able to see the end.  She has offered lots of therapies or counselling should I need afterwards which is good.  Annoyingly before they could start the planning she said they hadn't had my results from the ANC (slight panic as I then though I'd been given someone elses).  So she had to go off to find the ONC to get the right results as they had put down I needed Rads to the middle of my chest.  When she came back she said I didn't need them as my tumour was only Grade 2 and only 3 nodes affected.  Good job she checked!  So just Rads to collar bone and chest wall (I say "just" funny how thats made my day!).   So now just have to start the dreaded Tamoxifen (GPs still haven't got act together and actually issued it yet) and wait for Rads to begin.  Not sure how to feel at the moment... in limbo a bit...

Michelle - Glad you enjoyed time with your daughter, I feel like I want to hug mine close all the time, they find it totatly embarrassing!

kip

x

Member

Re: Surgery May 2018

Hi Michelle
I also went away to Malaga with a group of friends to celebrate our 50th birthdays in March. 4 days after I returned I found the area of thickening in my right breast which signalled BC. We’ve known each other since school which is why I’ve felt so hurt that I hardly hear from them. I was particularly sad and bemused when one cancelled a meet up that she’d arranged without explanation. I got a couple of sorry texts -I’ve just been so busy etc.. but nothing else.. . Your message has helped me put things in perspective tho . I’m not sure how I’d react if one of them had been diagnosed. I’d like to think id try to be supportive but I don’t really know that for sure. I also think I’m feeling very sensitive. Kip it’s interesting to hear about the friend who posted the hat pictures but didn’t reveal her diagnosis till everything was over.Im so glad you’ve managed to rekindle your friendship and find support. I am lucky that a couple of friends I did my teacher training with have really been there for me. One came around with their two kids and I said I didn’t want to freak them out as I was bald. He told me not to worry as his sister had had chemo and the children were used to seeing their Aunt bald. I felt terrible that I hadn’t supported him through his sister’s illness. I couldn't even recall him telling me! I’ve apologised profusely. He and his wife have kept in contact as has another teaching friend who even came to chemo with me. I think you’re right about letting others fall by the wayside even if only for a little while, I’m just thankful I have my family and some very kind friends,

Glad the seromas are getting smaller. The numbness is hard to get used to. My TM Breast have never really regained much sensation, Am I right I’m thinking this will be the same if not more so once I have my mastectomy?

Jean I hadn’t realise you also had an ‘interval’ and occult cancer’. I’m kearning the lingo and learnt that this interval cancer is the when cancer is found after a normal screening, The occult part is concerning, Did you ever find out why it could not be seen? In my case it’s obviously my dense tissue but I’m wondering what else can mask the tumours? Interestingly there is a whole procedure that should be followed if an interval cancer is found and the guideline were updated in March 5is year, Anyone with an interval cancer should be given a leaflet explaining what this means and detailing the steps that will be taken to review what has happened. Th whole procedure should be open and transparent, This certainly never happened in my case nor yours by the sound of things.

My neuropathy has just got to the annoying stage. I just want my feet to feel normal! My onc and I worked out that walking for any length of time makes the ‘tingly/fuzzy’ feeling and numbness words. I’m certainky going to need a healthy eating/exercise programme once my surgery is over. Just need to have a big enough tummy to create two reconstructed breasts beforehand!

Take care everyone. Will write more when I’m not so tired.

PS I have received confirmation of my transfer to The Marsden. I’m relieved. I feel I need a pair of fresh eyes to look at my case and suggest the best way forward.