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Surgery May 2018

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Re: Surgery May 2018

My previous hospital was also disjointed in terms of having to go to one floor for the mammogram, another for appointments and results etc... I’d have a follow up two weeks later and a physical exam.

I’m not sure how the Marsden organise things.  I’m glad all went smoothly for you Jean and your mammogram was clear.  Phew!  

 

I’m not ready for the Hope course or Moving on yet but I will be going back to my local Maggie’s Centre for yoga.  They’re holding a Kitchen Table Fundraiser next week so I’m going to bite the bullet and go- I’ve been holding back as it’s in the grounds of the hospital where I have my ongoing complaint.  

 

Ive had an amazing day with my OH down in Southsea, so fantastic to be by the sea.  We went to view some properties and fell in love with one.  We’ve realised we can’t afford a suitable house in London so we’ll hang on to the flat here but have the lovely house we can live in down South for holidays and weekends when we can.   In the long run we’d hope to retire there.  We had our offer accepted and as we were signing some forms for the estate agents I realised it’s exactly a year since I felt the area of thickening above my right breast.  I hope I’ll be able to remember this day for all the good reasons now and not the absolute terror of just knowing something was seriously amiss.  

We were only able to view the property today because one of the prospective viewers pulled out at the last minute.  As soon as we walked through the door we knew we’d found somewhere special- most amazingly my husband spotted a wedding invitation showing a beautiful building, pinned to the fridge.  We thought it looked familiar and were astonished to realise it’s the venue we’ve booked for our celebration/thank you party in the Summer.  Such a coincidence.

 

On a worrying note I had a call from my Mum to say my cousin’s sister is having an MRI scan a week on Friday following a recent mammogram/u/s.  She’s had to fight to even get screening at all as she was told she wasnt eligible for any despite both her Mum and sister being diagnosed!  She’s now had further tests and been told she also has very dense tissue and it looks like she may also have breast cancer.  Obviously we’re all hoping it will show she’s ok but I don’t think she’d be having an MRI if her medical team weren’t very concerned. It makes me all the more determined to fight for an Inform Law to make it mandatory to tell women about their breast density and the implications if they are found to have very dense tissue.  I recently found out the NICE guidelines for women on the High Risk Familial screening Pathway were updated in 2013 and states that if a woman has dense tissue she should be told and have it in writing that mammograms may not be as effective as they can mask tumours and they may wish to consider alternative scans.  I don’t know a single person who has been informed of this at their screening!! 

 

I’m feeling rather tired after a long day so heading off to bed.

 

Hope everyone enjoys the rest of the weekend xxx

 

 

 

 

 

 

 

 

 

Member

Re: Surgery May 2018

Blimey Kip it sounds like a real palaver at your hospital. I don’t know how long I will have to wait or if I will get it straight away but it had better not be 2-3 weeks!! Can you assume from that it was good news as wouldn’t they want to do something if there was a problem? 

As for a treatment plan I was told what the plan was in my first or second meeting with the concologist but I have never had anything written down or asking if I want help in other areas. 

Jean the service you have received sounds great, that’s how it should be for all of us. X

Kip Community Champion
Community Champion

Re: Surgery May 2018

Just as I thought... my friend had her first mammogram since diagnosis today at Ipswich hospital... been told it takes 2-3 weeks to get results, and you get them by letter... I'll be camped out by the letter box... grrrr.

Kip

x

Kip Community Champion
Community Champion

Re: Surgery May 2018

Morning all,

Feenix - Whoop Whoop.. fantastic news about the NED mammogram and so very impressed with your breast clinic that its all done in one place and at one time and you get the results there and then!   How I wish it was like that here, I think i have a 2 week wait for results from mine.  Our breast clinic is all over the place, one area to see the consultant or nurse, then off down another corridor for a mammogram, then back up to the clinic with a little sealed envelope you get given at the mammogram (always scares me as to why its sealed).. .pass the envelope over, the secretary takes a sly peek.. then you have to wait to see if you need to be seen or just go off home to await the results.  Its so disjointed.  They are currently in the process of raising funds to build a purpose built unit to get everythign in once place so that you don't have to get dressed and undressed umpteen times and wander around.   They have a long way to go until they have the funds though.   My OH is setting up a charity 5-a-side football tournament in June to raise some funds for them.. they need it!    Your fallen tree is huge... wow...that will be a big job getting rid.   Have you recovered from the Yoga?  I am swimming tonight, just hoola hooped too!   Still stiff but just trying to keep going...I think the Teva pills are kicking in and I do feel a bit better.  I've been asked to take the hoola hoop to the Hope course next week as its about fitness and diet!   Eeek .. quite funny as we sit and eat biscuits and cakes for the whole session!   Yesterdays was really good, dealing with anxiety and stress and how to communicate better with those around us.. Oncs, docs and hubbies alike!   One of the most interesting things we discovered was that when the chap from Macmillan asked us about our Treatment Plans (which we all should have) .. not one of us has one!   He was quite shocked and said we should have... do you guys?  Its a sort of moving forward document, setting out whether you would like help with holistic treatments, diet, exercise, mental health help etc?

Reddi - hope things are going ok over the pond xx

Michelle - have you recovered from the run? 

Kip

x

Member

Re: Surgery May 2018

Michelle ... having a mammogram was an added extra. It was up to me whether I had it on the day of my appt. Seemed daft not to have it. I’d seen women have their name called out in the waiting room before and just be told it was ok for them to go so presume they were f/u mammograms. When my name was called out I had to go right over to the nurse so I was expecting to be told I needed further pictures/investigations.... and I would have been ok with that. But...I think the nurse just didn’t want to shout over to me that it was ok for me to go !!! You should find the moving forward course ok...different to the Hope course.

Kip ... hope things are going ok although I know you have appts yet this month and next. I too hope you’ve made it to your course this week. Have you been swimming again?

Ive done a bit of gardening today ... not as warm as yesterday though. Big Elm tree coming down on Saturday. Need to research/test drive cars ... again !!! Last year I couldn’t make a decision ... just not in the frame of mind to do so. Really need to look at getting a new pair of specs, which I hate doing, as when I try new frames I can’t see a bat and I have to wait to see what the pair I’ve chosen is like with my prescription lenses in 😂 😂 😂 

Member

Re: Surgery May 2018

Hello Jean 

Good to heat from you, it sounds like you’ve had a busy week! 

Thats impressive Jean that you went to see the surgeon and she put you in for a mammogram there and then. Were you expecting that? Great news that all is ok, a relief I’m sure! Good to know you have an appt with the onc a few months down the line too. 

That tree is huge amazing you didn’t notice it! We are planning to start a bit of gardening this weekend, so much weeding to do.

Kip have you been to your Hope class this week? How did it go? I’ve signed up for moving forward, I start in April. How are the aches? X

 

Member

Re: Surgery May 2018

Pics are great Michelle. Well done.

Kip ... sorry you’ve been dealing with a bereavement/funeral. Well done signing up for the mud challenge. 

Clare ... pleased you’re healed. Great you’re planning a trip to Germany.

Reddi ... pleased you’ve reached home ok. Hope all is going as well as possible arranging your mams ongoing care.

Heck... it’s been ages since I’ve caught up. I’m sure I started a post over the weekend but had to put iPad down. Felt out of sorts over weekend. Anyway adjusting thyroxine a bit, being more active, went to yoga on Monday and I still know about it even today 😂 Had review with surgeon Monday too and she put me in for my first mammogram. Everything is done in the Breast unit. You’re told if things are ok...you are back in the waiting room and are told it’s ok to go if NAD which mine was. I was asked about recon ... that’s routine but declined. Seeing her again August/September and see onc in September. We went out to do gardening yesterday and discovered our big Elm tree had split at the bottom and nearly half had fallen over. We hadn’t noticed it just looking out the window. The remainder of the tree isn’t safe now so hopefully it’s coming down at the weekend. 

image.jpg

Xx

Member

Re: Surgery May 2018

Kip that will be so much fun, especially doing it with your daughter!! I’ve never done one you’ll have to tell me what it’s like, and I want to see photos!! X

Reddi, glad you’ve arrived safely, sleepnoff that jet lag and enjoy your time with your family. X

Jean how are you doing? X

Member

Re: Surgery May 2018

Posted while trying to add: Hope everyone is doing well.

Member

Re: Surgery May 2018

@Kip That sounds like so much fun! Laugh the whole way. (That's what I would do.)

 

Hello from America! Tired, and it's only 7:30am, day 1.

Kip Community Champion
Community Champion

Re: Surgery May 2018

Hello everyone... how are we all?   I've just entered my daughter and myself into The Great Mud Challenge, which is like the Race for Life only through mud and obstacles!   Eeek.. hope the knees hold out or else she'll be carrying me.  Its not until June 23rd.. hope the sun shines that day.   What have i done...Smiley LOL

Kip

x

Kip Community Champion
Community Champion

Re: Surgery May 2018

Thanks for the message Michelle, love the group name too!  Look forward to meeting up sometime.  I have a friend who has been treated for BC last year too, she is just about to start on letrozole and asked her Onc if this causes aches and pains and the Dr said "yes expect your knees and hips to acheand things to feel stiff".. at least she was honest..although she did add "it should improve with time".. although didnt specify what amount of time.  I didn't like to say that having read through endless threads on  here regarding various hormone therapies.. letrozole sounds particularly bad for the aches and pains.  Hopefully she'll be one of the lucky ones.  

Kip

Member

Re: Surgery May 2018

Jean, hows things? I noticed you haven’t posted in a few days, I hope all is well xx

Member

Re: Surgery May 2018

Sorry to hear you have been to a funeral Kip, you are right it is never an enjoyable experience and I think completely understandable that you are emotional. We have been through a lot over the last 12 months. 

My onc told me that Tamoxifen stays in the system approx 7days so you should hopefully start to see a benefit of the change of brand soon. I also feel sore still from the radiotherapy, it was particularly bad yesterday so I probably brought that on myself, too much bouncing around! I’m not doing the arm exercises now but probably should. I think you’ve said before but with the various massage and exercise routines it can be difficult to get out in the morning! It is difficult to know what the right type and amount of exercise to do. I hope your aches are better soon.

Thanks both for your comments on my photos, I am so glad I did it. It is a big part of who I am so good to feel a bit of ‘normality!’

Thanks for your number Kip, I’ve set up a group and sent you a message. If you don’t receive it let me know in case I’ve done something wrong! X 

Kip Community Champion
Community Champion

Re: Surgery May 2018

Hi,

Wonderful photos Michelle!!   And great to see you look just as fit and healthy in the post cancer as in the before!  Good for you for getting round in a better time than expected.  I would be still completing the course today!   I've PM'd you my number for whatsapp!

CDC -  good to hear your news and that the niggly wound is healing up.. sounds like you are doing well too.   Glad Teva suits you better, I'm still struggling.  Now have a very stiff pair of shoulders and neck to add to the list.  Don't know what to do for the best.. rest up or exercise more?   I'm 1 week into Teva brand so its still pretty new.. plus I'm full of the last brand so its difficult to tell whats what still.   I have noticed the MX site, shoulder and arm on the poor side are getting very stiff, so have to up the exercise again to keep that moving... seems par for the course for radiotherapy sometimes to hit back after a while.  I just wish I could get a whole night's sleep.. with the stiffness and the hot flushes its a nightmare... getting exhausted.

Just been to a funeral.. not easy at the best of times, and found I couldn't stop crying.. just so emotional at the moment.   At least the sun is shining here today.. might make me feel better.

Kip

x

Member

Re: Surgery May 2018

Such fabulous photos Michelle!  You did so well today.  Congratulations. Lovely to see the sun came out for you too xxx

Member

Re: Surgery May 2018

Awesome Michelle! Xxxx

Member

Re: Surgery May 2018

Hello! I’ve posted 2 pictures of this years and last years half. As you can see the weather was much better this year! I enjoyed it but was pleased when it was over as I was under prepared. Amazingly I got a better time than I’d hoped, I wanted to do under 2:30 and came in at 2:28 so really pleased with that, every second counts!! 

Claire good to hear from you and pleased for you that your infection has healed, you’re lucky to have such a helpful sister. I’m sure you will feel better having seen the surgeon, it’s comforting to have the expert opinion isn’t it? Sipping for a holiday apartment and travelling to Germany both sound very exciting, I think we all now need stuff to look forward to, big and small. We certainly deserve it! 

Great that everyone is interested in meeting up. Im thinking it might be easier to organise over what’s app. If you all pm me your numbers I can set up a group. Any problems with that let me know.

Happy Sunday night all, it will be an early one for me! X

 

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Re: Surgery May 2018

73CB798C-2F77-404B-B1F2-A77AE49A9624.jpegMarch 2018 - running with cancer but not knowing

 

4EEA1E98-5838-4386-9287-2DE1B92A5680.jpeg17 March 2019 - running without cancer!

 

Member

Re: Surgery May 2018

Hi all

Sorry I haven’t posted very much.  All ok here.  The little bit of abdominal wound has now closed up thanks to my younger sister’s wound care skills.  I had a feeling if we could remove the stitch the skin would finally be able to heal over it.  I get so lost on this forum now that I can’t see the whole thread at any one time so sorry if I’ve already said she found the area was infected but the pus she managed to get out was relatively clear which she said is a good sign.  I now think that my horrible infection earlier may well have been wound related after all.  I will see the plastic surgeon next week.  I just have one area that is a little odd on the left just cells my clavicle.- it’s freaking me out a little as it feels like my tumour when I first felt it.  I think it’s probably necrosis.  I’ll see what he thinks.  Kip I can relate to worrying about every ache and pain.  I have to say the TEVAtamoxifen seems to be better for me and I’m not nearly so stiff. Hope you’ve got over your horrible cold.  

 

Michelle How did it go today?  Good I hope despite the weather.  I would definitely like to meet up with everyone and I live in Highbury so happy to meet up in London but also prepared to travel.  I’ve just come back from an overnight stay in Southsea to celebrate the 12th anniversary of meeting my OH.  It was extremely blustery as we were walking along the sea-front and it certainly blew away some cobwebs. ( Jean Hope your washing has been staying put!) We were meant to stay in a fort converted to a luxury hotel but you can only reach it by boat which was cancelled.  When we saw the waves we were actually very glad.  We found a gorgeous boutique hotel as an alternative.  We’ve been hoping to buy a little holiday home somewhere and we really feel that Southsea could be the place for us especially as it’s on the train line for both my Mum and Rick’s parents. We’re hoping to go and look at some apartments/houses next weekend so fingers crossed there will be somewhere we like at a good price.  It’s very exciting! 

 

Reddi, great your Mum is out of hospital but I realise you will have some big decisions to make about her care.  I’m so pleased you are able to get over to the US to see her and other family members soon.

 

Im looking forward to travelling to Germany and Austria with my daughter in April.  We will be meeting up with my Oh who has a business trip In Berlin and then another in Vienna.  We will hire a car and get to see my lovely friend who was diagnosed  with BC 6 months after me.  She started on her taxane treatment after finishing the first half of her chemo recently but had a very frightening allergic reaction to Paclitaxel. Going red, heart racing, then blacking out!   Thankfully her medical team acted swiftly and she was ok.  They’ve managed to find an alternative and she’s feeling fine now.  

 

I recently went down to my Mum’s to see one of our family friends from Austria (My Mum used to live there).  She’s also had BC and is 2 years clear of BC now.  It was very interesting to hear that it is standard to get an ultrasound as well as a mammogram under the Austrian screening guidelines.  I may well get a private ultrasound each year. The Monarch E trial adds another drug to the tamoxifen regime as it’s thought it may reduce the chance of getting BC again.  I don’t know yet if I’ll be getting the additional drug or not but I will be told and will be monitored either way.

 

Hope everyone enjoys what is left of the weekend.

 

Clare xx

 

 

Kip Community Champion
Community Champion

Re: Surgery May 2018

Thought of you today Michelle, hope the run went well and you did u havef the very heavy sleet showers we had here.... Very odd

Kip

Member

Re: Surgery May 2018

Thanks for the good luck wishes for Sunday, I’m just pleased it’s dry! The weather here is awful this week, I hope you got out fornyour walk Kip and that you’re feeling a bit better. Funny you were wondering if your pain is due to rads, I’ve developed a tender spot along the nodes scar. Hopefully this will fade but I suppose I’m having a scan on 12th so if anything untoward they will tell me then. 

I totally get the panic with the hospital calling too, I had an unexpected call from them this week moving my herceptin to a different location. Everything is fine but boy did my stomach do a flip! 

You must be so pleased to have sorted your trip Reddi! My parents are only 3 hours away but sometimes I find that hard if they are having problems it must be tough them being across the Atlantic. 

Jean running isn’t for everyone but walking is still good as you know. I’ve only done race for life once, that was before I had cancer and I found it emotional, I would probably be a complete blubbering mess now!!

Pleased you all would like to meet up, London seems like a good place as we can all get there although if anyone has other ideas please suggest, I won’t be offended! Would people prefer week day or weekend? With Reddi away I’m thinking May. 

Claire would you like to meet up? No pressure if it’s not for you. 

I am more than happy to organise but all please feel happy to say if you’re not happy with anything I suggest, I’ll try not to be too bossy! How exciting!! Xx

Kip Community Champion
Community Champion

Re: Surgery May 2018

Hi Reddi, yes the pain is on the one side, surgery side.  Its not really pain as such, as it doesn't hurt unless i run my fingers over it, then it feels sore.  No rash or spots as yet so hopefully not shingles.   I'll keep an eye out though.  I am wondering if its a reaction to the radiotherapy, I know its been a while (end of December) since it finished but I have done some research and affects can crop up for some time.  The whole site across breast,  under arm and back are a bit tender too.  Nothing bad though, in fact unless I poke (somethign I love to do) its ok.  I do feel as though my body has just said "right I've had enough.. time to rest up for a bit"...I've been pretty luck throughout treatment and managed to keep going... perhaps I shouldn't have.  
So glad you have the flights books and the herceptin day moved on, I hope the trip goes well, and you can sort Mum's care out before you have to leave, one less then to worry about then.

I just had a complete panic... i was taking a work call and my landline rang, couldnt pick it up, then the mobile rang.. couldn't pick that up either.. but when I could look it was the hospital.  Mind when into overdrive.. Oh crikey whats wrong"... had to engage sensible head and think "I haven't had any scans or tests so can't be bad" but I was still worryign and couldnt call back as it was a central hospital number... then once I had calmed down I remembered they were ordering me a chicken fillet for the good boob...rang Breast Clinic.. Bingo.. its ready and waiting for me....Must remember to engage sensible head before panicking!!

Kip

x

 

 

Member

Re: Surgery May 2018

@Kip - Has the pain gone? It sounded as though it was just on one side of your body, yes? If so, do keep an eye on it for appearance of little bumps / scaly rash, which would be sign of shingles. I got it during chemo; it can be provoked by stress as well as overworked immune systems. 

 

I spoke briefly to a woman who staffs the Macmillan centre at my hospital yesterday. She's 10 years post treatment and mentioned that it took some time after she finished treatment for her body to rebound from colds etc. as quickly as it had in the past. Hearing reports from @Feenix, @Kip, etc., it does sound as though that is the case for us, too.

 

I've officially got the okay to move next Herceptin to 11 April and, after spending some serious cash with the airline, I'm off to the States for 3 weeks on Tuesday. Please no meeting up til after Easter! 

Kip Community Champion
Community Champion

Re: Surgery May 2018

Hi everyone.   Thanks for your support yesterday.   Still have the old cold, but think it may be waining a bit,  now have a bit of earache too...oh the joys.   Still good to know the old body can still have "normal" illnesses I guess.  

Reddi - was so sorry to hear about the ongoing nightmare's your poor mum is having to deal with, I hope you can get the flights sorted and get to her.   It must be so hard and disheartening trying to organise things from this end.

Michelle - good luck with the run.. you are amazing... I think I might just manage a crawl at present.

Feenix - Is the sun out there yet?   Still miserable here.. come on sunshine I need you.  

CDC - How are you?  Was wondering if you are still feeling ache free on the Teva brand?   I have just completed day 6 of being back on Teva so still waiting to see if it makes a difference.   Have you had your meeting for the trial?  I'm losing track of days and events here.

KTK - not sure I've heard from you for a while.. must mean you are out there getting on with life...excellent!

No swimming for me tonight... cold putting a stop to that, but going to try a little walk, need to escape the four walls.

As for staying on this page of the forum, other pages seem to have posts for many many years so lets hang on in there until evicted!

Meeting up --- I would love to meet you all, what an emotional day that would be.   I'm in Ipswich, so South East, good rail lines to most places... we should do it!

 

Kip

xx

Member

Re: Surgery May 2018

You’ve got a plan Kip... hopefully it will ease like Michelle said....but get it checked out if not. Refocusing your attention makes you forget other things.

Michelle ... good you’re giving it a go on Sunday ... just getting round will be good all things considered... and you can only get better. Good you’ve got your daughter as a running partner for October. Somebody asked if I was doing the Run for Life ... the word Run doesn’t do it for me as I’m definitely not a runner...but I could walk it 😊  Yes...let’s stick to the thread until we get threatened with being archived !! I’m north. Can get down to London no prob if that’s any good as a ‘central place ... other places available of course.

Reddi ... sorry to hear your mam is having a struggle. I do hope you get your flight changed...what stress. 🤗 

xx

 

 

Member

Re: Surgery May 2018

Thank you for asking after my mom. She's being discharged home today, but unfortunately, things aren't looking very bright. She's developed diarrhea -- apparently this is common when patients are put on feeding tubes, which the hospital required since she's on a vent and they felt her tongue muscle wasn't strong enough, and she'll have diarrhea for about 3 days after the tube is removed. But because she has the compression fracture in her spine, she is having a lot of trouble transferring to a bed pan, and needs 2 people to help her. I'm trying to line up 24-hour care through Monday, by which time the diarrhea will hopefully be gone, but it seems we can't get skilled nursing for this, which means no assistance for suctioning mucus from my mom's lungs -- something she's typically done herself, but right now she's very weak, so probably needs help, especially overnight. My sister is overwhelmed, physically and emotionally, and my phone calls to different agencies can only do so much -- and that is very, very little. After getting my oncologist's okay to move out my next Herceptin by 2 weeks (the max allowed), I'm trying to change my ticket to fly out asap, but I've been on hold for ages because of that Boeing aircraft being grounded. If they'll change it, then I've also got to rearrange next MUGA and some client meetings. What a clusterf***.

Member

Re: Surgery May 2018

Oh Kip sending you a big hug, sounds like you need it. Wrap up warm and get to bed, hopefully you can sleep it off. The pain in your side is more than likely connected to your cold and generally being run down. Look after yourself better still get your OH or kids to look after you.

Reddi is your mum home now? I hope so and hope that your research into ongoing care for her is going well. I’m so pleased for you that your skin hasn’t broken from rads, that is good news.

Jean I did a short run on Monday but am going into this half on Sunday completely under prepared. It will be a tough run and take me a lot longer than last year but I will limp round! My youngest has just signed up to do Cardiff Half with me in October which I am really excited about, although she will soon be fitter and faster than me! 

Re the thread I have no idea whether we have to move on, I would say stay here unless asked to move on?  I have mentioned it before but wanted to get Nepal and others still having treatment but who fancies meeting up? I would love to meet you all and give you a real rather than virtual hug! However I do realise Kip is out East and I’m out West but if anyone is keen I am happy to organise it and try and figure out a central meeting point. Let me know what you think. X

 

Kip Community Champion
Community Champion

Re: Surgery May 2018

Thanks Feenix.. GP called.. said if there is no rash he can't do anything so just have to see if anything develops.   I'll see what happens over the next couple of days, its only painful if I touch it.   Then I'll have to bite the bullet and ring hospital to see what they think.  Its just one thing after another with me.... at least its made be forget about the achey butt!  Every cloud....

Kip

x

Member

Re: Surgery May 2018

Kip ... sorry to hear your cold wasn’t just for 48 hours. Sounds like you may have the same virus I did. Definitely best to get side assessed...it could be shingles, rash might not have developed yet ?.... it sounds super sensitive. Hope GP gets back to you ASAP... good thinking using the C card to get on the list. You’re definitely out of sorts ... no hooping.... best to take it easy though. Plenty of fluids, eat little and often, meds for your aches and pains.

Reddi ... I really need to be more active. You’re right about the weather being a bit off putting ....  I’ve only done yoga once as got virus, then was away but I’m going to restart it. I need to refind  my mojo and get exercising beforehand as I’m seizing up!!! 

Michelle ... hope you’re doing ok and getting out and about...thinking the weather your way might have been worse than here.

Clare ... how are things?

Very windy here...debating about washing....will it stay on the line 🤔 

Got a question lasses ... how long are we able to post on our usual threads here .... will we have to devise another thread on moving forward after treatment at some time ...think that’s what it’s called. 

Xx

 

Kip Community Champion
Community Champion

Re: Surgery May 2018

Hi Reddi - oh dear oncologist's words not that helpful then hey.   I'm having a particularly stiff time of it at the moment, I have a heavy cold and that doesn't help.   Also now developed a patch around my side which is sore to touch or when clothes touch it.. now panicking I may have shingles.. no rash though?   My hubby had shingles and he only had 1 spot but had tingley nerve pain... trying to get a GPs appointment to rule it out but as always my GP's is as useful as a chocoloate teapot.  Yesterday their system was down so couldn't make any appointments.. today is half day as its "training this afternoon" so I am on triage for a GP to ring me to assess.  Have to confess I played the C card today, mentioned chemo, radiotherapy the lot and that made her put me on the list.   Trying not to think its anything C related as its on the bad side but doesn't seem to be bone pain, only hurts if I run my fingers over it.   Not a good day, can't go to my Hope course either as feeling rough and don't want to take cold germs to the others, some of whom are still undergoing treatments.   No hooping today.. must be feeling poorly...Smiley Sad

Member

Re: Surgery May 2018

@Kip Word from oncologist: Sorry, joint aches and pains are normal / expected SEs. If it helps, take paracetamol.

 

@Feenix Between your and Kip's hula'ing, and your yoga, and Michelle's marathons, you're putting me all to shame. I was not pleased with my weigh-in today (no gain, but no loss either), so I need to get into an exercise routine. The weather's been so miserable of late, it's hard to muster the motivation to get out. At least when I had daily RT, I got 2.5 to 4 miles of brisk walking every weekday, plus longer walks on the weekend. 

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Re: Surgery May 2018

Kip ... pleased you’ve got a comfy foob.... and a chicken fillet if needed. Get what’s offered. I’m still in Asda bras but would like an upgraded bra but at a sale price...some of the NJ bras etc are so expensive. I quite like my KK now...I like that you can mould it into a shape that suits ... I still want a lighter silicone foob as they give a good shape and feel. Got a wedding later on so a proper foob might be good. I did like the KK when travelling though.

Reddi ... pleased your mam may be discharged soon. Good luck with your research. Hope your bra hunting goes well. Fingers crossed for your se’s

I’m considering trying a non pocketed bra and just sewing one in 🤔 .... maybe 😂 

sunny and windy here

need to get out for a walk today

need to remember to do exercises 

yoga next week 

might pop into tai chi this week although I don’t think I’ll continue with it for now...stick to yoga 

xx

 

Kip Community Champion
Community Champion

Re: Surgery May 2018

Morning,  quick update on the new boob!   Met a lovely lady for the fitting.  Have come away with a nice comfy boob, doesn't feel much different than my KK which is good.   They have also ordered me a mini fillet to add to the other side if I feel I need a bit of balance as the new boob is a bit more perky (not that you'd notice) but she thought I may as well have one in case I wear a less supportive bra.. if it's free I may as well.  Got to order my free bra today too.   So all in all it went well, never realised there were so many shapes and sizes of prosthetics.   I think I will still be using my KKs as well as this one, I feel an emotional tie to my KKs as they have seen me through this last year.. sounds daft doesn't it but there it is.. bless the old knitted Knockers!

Kip

x

Kip Community Champion
Community Champion

Re: Surgery May 2018

Hi Reddi,  good news your Mom is coming home, albeit tinged with the need to look for alternative care for her.  Sounds like you have your hands full with research, hope it goes ok.  Interesting to read about your aches and pains and will be glad to hear what your doc says.   I ache everywhere, my shoulder on RT side is stiff too, despite the exercises, neck and shoulders both ache.   Even my fingers feel stiff, just when we thought nothing could outdo chemo for SEs hey.   And as for bright coloured KKs, I think they do all colours, I saw some fab rainbow ones on the site, you can request a colour if you want one so they must have them.  Bright blue would be super cheery!  mine are just white and black depending on what bra... but might get Mum onto some funky ones.. why not.. might has well have some fun.

Feenix - I'm glad you kept hold of the washing yesterday.  Today is grim and grey here too.  Let me know how the search for new bras goes, Im still in the Asda ones, but wondering what the fit will be like with a prosthetic?   Not sure they make one small enough to match my remainign boob Smiley Very Happy 

CDC - hoping the wound is all healing nicely and you are gaining momentum every day.

Kip

x

Member

Re: Surgery May 2018

Hi, all. My mom may be discharged home today -- waiting to hear. It will probably be a relatively short-term stay, however, as she and we think that we're approaching the time when she'll need to move into a skilled nursing facility, since her muscles have atrophied enough to put her bones at high risk, and the carers do not have the nursing skills to reduce fractures, etc., going forward. I have to do some research this week into Virginia programs to see if any might allow her to get skilled nursing assistance at home rather than in a facility. (That's the simple version; US healthcare law is super tricky.) 

 

My skin seems to be holding up well still -- now on day 5 after last RT. I know I'm not yet at peak SEs yet, however. Seeing the oncologist tomorrow -- can't wait to talk about all my aches and pains.

 

@Kip, I'm on exemestane (AI) alongside Zoladex (puts me in menopause), and my joints hurt like hell. 👿 I'm not sure if it's the AI or the bisphosphonates or the combo. Ankles and wrists are the worst, but knees and elbows hurt, too. I've got some shoulder pain on the lefthand / RT side, and though I'm doing my exercises once or twice a day, it seems to be getting worse, not better. 

 

@Michelle21 & @Kip I've also found my silk pillowcase (from chemo days) to be super helpful -- so long as I keep it to the side of the bed and only pull it into action when I wake with a hot flush. By the time the flush passes, my body has warmed the pillow up, so it doesn't feel too cool when I get chilled. The Chillow sounds like a perfect option for the summer.

 

@Feenix Glad to hear that you are recovering from the jetlag. 🛌 I'm assuming you want/need a fairly structured bra with pockets. I'll keep a lookout for options when I do my inevitable new-bra shopping. Smart idea to try adding a dressmaker's weight to the knitted knocker. Sadly, I've discovered that I dropped a stitch early on in the one I made before I was cleared for immediate reconstruction. Not sure I can mend it well enough to donate it. Plus, I chose a lovely deep blue yarn; not sure the UK KK group take unusual colours. 

 

@cdc Like Feenix, hoping your wound has closed up -- or is getting closer to it.

 

Good luck with the anniversaries coming in the next few weeks. I found my one lump 3 April (though I always remember it as 4 April -- the day the GP confirmed and referred me to the clinic); diagnosed 2 May. What a year. 

Member

Re: Surgery May 2018

Yes...washing clung on Kip. Rather wet and windy this morning. Hope foob fitting goes ok... my fitter just looked at me and seemed to know what kind/size I needed. They are rather good, in spite of me not wearing it apart from 2 days soon after I got it. I’m going to see if I can get an even lighter one just because I’m so used to wearing KK....probably need to get a dressmakers weight and pop it in. Need to get on the hunt again for another ‘good’ bra. Yet to try amoena but would prefer to see them rather than send for them online. I may find a shop that stocks them 🤔 

Michelle ... you’re right about travelling being tiring, especially long haul. Mind you I just chilled out whilst away, couldn’t do anything else,  unlike you doing your trekking. I came back with OH. Hope your running is doing the trick...must feel good. 

Reddi ... hope all is going well.

Clare ... hows your abdo wound doing?

xx

Kip Community Champion
Community Champion

Re: Surgery May 2018

Hello,

Thanks for the tip re the Chillo Michelle, sounds interesting.  I think i need one, I get so hot in the night but then I get cold afterwards too, can't imagine what it will be like in the summer.Smiley Surprised

So far the physio hasn't really helped, I'm doing the exercises but they make it hurt more.. not sure if thats good or bad?   I am still so stiff everywhere its hard to work out whats helping or not.   Anyone have stiff arms?   My elbows ache when I move them.   Actually laid in bed (whilst I roasted alive) and worked up my body to see which joints didn't ache... hmmm didn't find many... jaw I think was the only one.   I know the nurse mentioned they could change me to something else if it was awful but having read about letrozole they seem to cause more aches then Tamoxifen so I think i'll stick it out.  Its not so bad I can't function so in the scheme of things its manageable.  I've had 3 days of Teva now so going to see how that goes.

Reddi - hope Mom is ok?

Feenix - did the washing stay on the line..  mine did.. just about!  

Off to hospital today for prosthetic fitting.. quite intrigued to be honest... will report later!

Kip

x

Member

Re: Surgery May 2018

I forgot to say for anyone getting hot flushes at night or anytime I highly recommend the Chillow. I’ve just bought one from Amazon only £11 used it last night it was bliss! It’s flat and filled with a gel that is really cooling when you put any pressure on it. X

Member

Re: Surgery May 2018

Well it does seem to vary when the first mammogram is given but I know I was told it would be 1 year from surgery, so I just need to decide if I’m going to tell them of their error or go ahead with the appt. I have a similar problem to you Kip, my eldest b’day is on 11th April, but I do like the idea of having a mammogram sooner rather than later. 

Yes it does seem we are all coming up for 1 year, I was diagnosed 29th March. I’m not sure how I feel about that really. I know that first week after diagnosis was the longest, darkest, and most fearful of my life. I was in complete shock for quite a while afterwards. Six days after diagnosis I was having chemo, how your life can change in a week! I did wonder if I would be here in a years time and here I am! Still here, still worrying about kids, still running and walking with the dog! Everything is still the same but also completely different, it’s an odd feeling isn’t it?

Jean glad you’re home safe, it takes a while to get over not just jet lag but also travelling is so tiring isn’t it? Is your OH back with you? 

Reddi fingers crossed your mum is discharged soon, glad she is improving.

Claire it must be a comfort that you will be monitored through the trial. Hope you have recovered now from the op and are happy with the results.

Kip I hope your cold doesn’t last. I’ve had more colds since finishing treatment but apart from one virus they haven’t been particularly bad. Also good luck with TEVA Tamoxifen. That’s the same brand I am on and I don't seem to have any problems. How are the glutes since physio? 

We had a lovely day visiting our youngest on Sunday. She was very clingy when we were leaving. It’s so difficult to know if she is just a bit home sick or if all of this prays on her mind. I guess it’s the same as it is for us, only time will tell. 

X

 

 

Member

Re: Surgery May 2018

Michelle .. forgot to say that it’s good you’re feeling more like ‘you’

Kip ... March/April is busy for you appointment wise. I got a f/u appt with surgeon for next week...tried to put it back but seems she wants to see me according to the last GP letter...prob because I was all over the place around mx surgery. Anyway I can check re mammogram then as I’m down to have it in August ... that’s nearly a year and a half since my last one. It’s been windy here but not too bad.... rain and hailstones yesterday...windy again today but nice and sunny. I might put a load of washing in....towel still attached to line so that’s a good sign. I’ve still got a pile of ironing to do from before I went away. I do still feel tired but hoping I’ll be more perky by the end of the week....I need to be more active but hopefully not chasing clothes around the garden. Ive not even picked up the hoop...that’s bad. I hope your cold is the 48 hour kind. 

Clare ... good luck with trial although I can’t recall what the MonarchE one is. 

We are all near the year mark since referral and diagnosis ... maybe that’s why I feel a bit off kilter at the moment ... 14th of this month I had biopsies etc and diagnosed 21st.

sending hugs to all

xx

 

Kip Community Champion
Community Champion

Re: Surgery May 2018

Morning all,

Reddi - glad to hear you Mom is improving, hope she is home or coming home shortly.   Its interesting to hear how the different hospitals go about appointments isn't it.  

CDC - We must all be pretty much coming to the anniversary of the finding of the lump musn't we?  I can't remember the exact date but its definately around now (I think I have blocked that day from my mind).   I know I was waiting over Easter to go to the hospital.   Its incredible how much has happened in a year isn't it.   I'll be glad to see the back of April, I seem to have so many appointments coming up for different things, prosthetic fitting tomorrow, smear test next week, mammogram, follow up appointment, aspirin trial appointment and then lymphodema clinic.. I'm really hoping I get the all clear and can then be left alone for a bit.  I see you start your trial soon, I'm doing ok on the low dose aspirin.  Just started my 4th week and no problems so far.   Also just started back on Teva brand Tamoxifen so looking to see if that makes a difference.   Woke up today with a stinking cold though... oh well .... must be mindful to see the good in everything... a cold is easy peasy compared to chemo!!  

Feenix- hows the jet lag?   Have you been attached by the high winds, we have.. thought the house was going to take off on Saturday... I made the mistake of hanging out the washing.. neighbour ended up bringing it back to me!

Hope everyone else is feeling ok.

Kip

x

Member

Re: Surgery May 2018

So glad your Mom is improving Reddi but sorry she’s having to have a feeding tube.  Hope she’ll be out of hospital very soon.

 

I won’t have any follow up scans/mammograms at all as far as I understand as the mastectomy removed all the remaining Breast tissue.  There is still an extremely remote chance that I could get Breast cancer in the skin but I’ve been told it would be very obvious and I would be able to see it.

im due to start the Monarch E trial the week after nextand the research team have said I’ll be under their care from now on so I’ll certainly be monitored in other ways.  

 

I can imagine it’s a worrying time gearing up for follow-up tests.  I can’t believe that on 21st March 2019 it will be a year since I had my fateful shower and found the area of thickening on my right breast- I don’t think I had any inkling just how much treatment i’d need!  

 

Take Care everyone and I just hope this message posts as I realise the last couple I wrote didn’t post.

 

Clare xx

 

 

Member

Re: Surgery May 2018

Sounds as though each trust sets its own policies on first mammogram after treatment, and it probably depends somewhat on the case. When my surgeon and I discussed date for my mammogram, surgery date didn't seem to be a factor. I had my surgery in December, so October is 10 months after surgery. I'll be having the mammogram on the WLE/RT side only (not on the mastectomy/reconstruction side, of course); it might make a difference that I had bilateral BC in terms of monitoring. 

 

Also, my mom seems to be improving -- they are talking about discharging her home on Tuesday or Wednesday. However, she's been moved to intensive care to open up her critical care bed for another patient, and they have put her on a feeding tube (through the nose, ugh), so I had a quick skype with her on Friday afternoon before that happened. Apparently, there's some new law -- not sure if it is state or US federal law -- requiring ventilator patients in hospital to be put on a feeding tube after 2 nights. The hospital staff tried to get a waiver for her, but it didn't come through. They also had to place a catheter in her heart because all her veins were collapsing when they tried to place a cannula -- and I thought I had it bad when they struggled to get my cannula in for the bisphosphonates in Feb. She's going to be *super delighted* to get home.

Member

Re: Surgery May 2018

Kip ... Hope course sounds good

Michelle ... I was told I would have mammogram a year after first surgery, which was in April, diagnosed March when I had my last mammogram in breast clinic. If I havent got an appointment by end of May I’ll give them a ring as I was told there’s usually a bit of a delay.

Reddi ... congrats on finishing rads and getting booked up to visit home. Hope your mam continues to improve.

Clare ... hope you’re doing good.

Im really jetlagged..could sleep for a week. Where’s the sun ...

xx

Kip Community Champion
Community Champion

Re: Surgery May 2018

Hi Michelle,

My first mammorgram is 11th april which is exactly 1 year to the day of diagnosis.  I then have to go on 23rd april for follow up appt.   As i had a masectomy it will be mammo of remaining boob only.  My surgery was 16th may so not too far away from that date either i guess.  Either way im dreading it.  Im going to ask about the check ups going forward as dont want them forever being day before hubbys birthday and having to wait over Easter for results every year.

kip

Community Champion

Re: Surgery May 2018

Michelle

 

I believe on the whole ladies who have had surgery will have their first mammo around 12 months after surgery.  My oncologist told me that the Trust policy was that it would be 18 months after surgery and then annually thereafter.

 

It is possible that they have sent this out to you in error, might be worth just giving them a call to check or give your breast care nurse a call to see what she says. 

 

helena xxx

Member

Re: Surgery May 2018

Michelle it may be worth checking re your mammogram as I was told they wait so long after surgery before doing them. I had surgery in October and am seeing my surgeon again in April re surgery on the other boob but was told to mention to him that my mammogram will be in October to check if that will be ok. I ws diagnosed last March so it will be more than 12 months to my first mammogram on the unaffected boob although I am hoping he will do a mammogram or an ultrasound on that boob when I see him which should pick anything up. x

Member

Re: Surgery May 2018

Thanks for that Reddi. It seems everyone varies, I was talking with a few of the women I had chemo with and some were post surgery and some post diagnosis. I think I’ll just stick with this and not say anything. How are you feeling since rads have finished? Is your skin holding up? 

Im really feeling more like me now, making more of an effort socially without feeling so much like cancer is in the room with me. 

Driving down to see youngest daughter for lunch today, can’t wait!

Hope everyone else is having a good weekend, I hope you have caught up on your sleep Jean! X 

Member

Re: Surgery May 2018

My 1-year anniversary mammogram should be mid-April, but as this was going to be 4 weeks after finishing RT and I have Herceptin through September, my surgeon and I decided to push my first post-treatment mammogram out by 6 months, to October.