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June 2018 Chemo Starters

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Re: June 2018 Chemo Starters

Hi @Willie! Are you on one of the novel anticoagulants (NOAC) or old-fashioned warfarin? I had a pulmonary embolism back in the summer of 2017, and the docs put me on apixiban (brand name Eliquis) for six months -- the NOACs are great in that you don't have to get regular blood tests or cut dark leafy greens out of your diet, but you do have to adhere very strictly to the schedule of pill-taking, since they have a relatively short half-life. In addition, I'd suggest getting a medical alert bracelet (or making one, which is what I did) to wear while you're on the anticoagulants -- especially if you're on a NOAC, since they don't (yet) have a quick reversal agent should you have an emergency (unlike warfarin). 

 

Post-surgery update from me: The day after Boxing Day will forever more be celebrated in our household as Detubing Day. Finally got the drain out on the mastectomy side this morning -- 14 days. (I'd been told that because of the type of surgery I had, I'd have my lil buddy *at least* 14 days, and I went in to the hospital slightly worried that I'd be stuck with it longer.) Apparently, I've been healing quite fast as it took quite the series of tugs to get the tubing out. Ouch. I'm glad I took some paracetamol this morning before I headed in.

 

Path results around 9 Jan, so RT planning won't be until after I know if I need a re-excision on the left, etc. 

 

Hope y'all are having a restful, lovely, peaceful week. xoxo, r.

Member

Re: June 2018 Chemo Starters

Greetings ladies!!   It's been a while I know, I last appeared here on 24 July and while I kept meaning to dip back in, life got in the way.    I've caught up with all your posts for the last few months today and it's good to see the posts about chemo side effects slowly being replaced with posts about hair growth and approaching radiotherapy.  Here's my catch up. 

 

I finished my 4 FEC / 4 T on November 22nd, so five weeks 'out' today.   I have to admit to keeping quiet here during my FEC cycles as many of you were having such a bad time and I thought it ungracious and fate-tempting to report that I didn't have any adverse side effects at all - other than the hair loss and weighing a ton (self inflicted!).   

 

I hit a icy patch a few days before my first Docetaxol, I woke up with vertigo/or a derivative of, it wasn't looked at too closely as it's not life threatening.  A couple of days on travel sickness pills sorted it out, although I walked like I was drunk for a week or so after.   In the general scheme of things, it was just a bump in the road but I wouldn't wish it on anyone.  

 

I had a PICC line put in before the poisoning started.  I had expected it to last through the 8 cycles but it seems it's not usual for that to happen.   It stopped working, they couldn't get any blood back out of it during the weekly maintenance and for the nadir bloods.   I had an ultrasound to see where it was, if it had moved but it was being blocked by a clot just below my collarbone. They replaced it with a mid-line, a shorter version, and the hospital told me that I had to give myself daily anticoagulant injects for three months.   That freaked me out, being needle-phobic, but I had to suck it up and get on with it.   I did that for a week and then the oncologist asked me if I was taking my tablets.  "TABLETS? THERE ARE TABLETS?" I shrieked ... when he came back up from under his desk he wrote me a prescription for tablets.  

 

The Docetaxol wasn't as kind to me as the FEC, I did get very tired on the first lot, I had to take two days off work and lie down but that was on the back of the vertigo.  The second cycle was easier, I took two days off just in case.  The third and fourth cycles were even easier although I did take the days off as a precaution.   I booked a dog walker for those days as I found getting round our (steep) park, pretty challenging. My fitness is not back 100% but it's getting there.

 

The mid-line kept me going for the next 3 cycles.  That one failed just before the last cycle and I had to go 'traditional' and have the poison administered into my hand.  I am just so grateful that I had that line for 7 cycles, even if it did give me a clot.   They told me the clot would dissipate over the three months and then I'd be able to stop the anticoagulants.  However, a follow up ultrasound last week has shown that it's still there and the radiologist has suggested that it'll be there permanently and that I just need to take the tablets forever.  

 

Last week also saw my annual mammogram, brought forward slightly because of my forthcoming radiation, on the remaining boob last week.   I was a bit fraught in the run up (understatement!) but it was clear.  Hoo-effin-ray!!

 

I've got radiation starting on 3 January for 16 sessions.   I'm a little concerned about the burning and will do as much moisturising as I can but I'm really rubbish at all that stuff.   I'm also worried as I have lymphodoema in the arm on that side and it's stretching across my scar site.   It's very fluidy and I've got an dread of the radiation heating up the fluid and me boiling from the inside out.   I'm no doctor!

 

On a more positive note, my hair started to grow during cycle 7 of the poison.   It's getting wiry round the sides but is still very sparce on top.  The different lengths make me look like a cross between a baby bird, a 90 year old man and a testicle.  That's a good look eh?   In another cruel twist, I kept my eyebrows and lashes until my hair started to come back, then they jumped ship making me look like Humpty Dumpty with my big bloated steroidy-crisps and chocolate-bread face.   I'm off to get one of those Lush shampoo bars as soon as I can.

 

Anyway, enough about me.    It's been really good to read your posts and to see that we're all moving through this adventure we've been thrust in to.  I'm keen to see your radiation advice too in the next few weeks.

 

Wx 

 

Kip
Member

Re: June 2018 Chemo Starters

Well said CDC! 

RedRose how did the last one go?  Ive got a little red sunburn patch on my collar bone but doesnt hurt yet.

Member

Re: June 2018 Chemo Starters

Brilliabt news Red Rose!! 🔔 🔔 🔔

Hope everyone is able to have a joyful Christmas. We’ve all come so far and though we haven’t had a choice, we all deserve to be proud of gettng through each treatment. Huge hugs to everyone and here’s to a great New Year! Xxx
Kip
Member

Re: June 2018 Chemo Starters

RedRose...  Ring that bell loud and proud!

 merry Christmas everyone...  May it be SE free and full of love and peace!

Member

Re: June 2018 Chemo Starters

@RedRose  🔔🎉 CONGRATULATIONS!! 🎉🎶

 

And to everybody who celebrates the holiday, Merry Christmas! 🎄🎁☃️🎅🎄 May 2019 bring us all much health and happiness.

Member

Re: June 2018 Chemo Starters

Good morning ladies! Merry Christmas Eve🎄🎁 😁. Sorry not posted in a while been a busy few weeks 🐝. Christmas shopping all done so having a chilled morning before the children’s mum drops them off as we are all heading off to the hospital for my last radiation treatment and I get to ring the bell 🔔 just in time for Christmas! Radiation staff said the kids can do it too to mark their journey with me and give them a bit of closure too now I will have finished active treatments for a while. Xx
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Re: June 2018 Chemo Starters

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ktk
Member

Re: June 2018 Chemo Starters

It is around the sides and top. Just wondering if I can stick the nail back on. It is very sparkly 🤣
Kip
Member

Re: June 2018 Chemo Starters

Oh ouch ktk that sounds painful, seems we are all suffering with problem nails.  Ive painted mine just to hide their hideousness! Just another gift frim the wonderful chemo!

  Is it sore wihouy the nail?

ktk
Member

Re: June 2018 Chemo Starters

Lovely to hear from you!! So I went to a friends’s Birthday party last night. The biggest problem was finding something to wear, as I have put on so much weight! I don’t really want to spend on new clothes as hopefully I will lose the weight soon!

The bad news is that I lost my thumbnail at the party. I banged. It washing my hands and it came off! There is a fair bit of growth, about half a nail, underneath. I guess the rest will follow😢 Kx
Kip
Member

Re: June 2018 Chemo Starters

Ktk glad youve found the eyelashes are coming back.. nice isnt it... Not so the leg fuzz tho!

Reddi you did make me smile withnthe doppelganger post... And loving the bow for the bag!  Ive thought about spraying my white buzz cut with glitter to lookn ike a bauble!!  Eyebrows are a tricky art aren't they?  I remember the lady at the LGFB course saying they shoild be "siblings not twins"...  Mine sometjmes just looked like dead slugs.  Good news is when they come back they seem to do so quickly...  Now have hairy slugs again!

Member

Re: June 2018 Chemo Starters

@Shi Txx for the tip! And I've already picked out a contrasting green gift bow for my drain bag! Tis the season!  🎅🎄🎁

Shi Community Champion
Community Champion

Re: June 2018 Chemo Starters

Reddi 😘😘glad you found the ✨✨✨✨for eyebrows go with a powder and stuff little brush, a lady on google does good tutorial and to start with a couple of the eyebrow stencils to use with the powder help, get it all off Amazon dirt cheap but really good 👍👍and grab a few tinsel wigs too, it’s Christmas and you’ll rock them 😁😁😁I did last year and bit of tinsel round the drain darling, if it’s going to hang out with you it’s got to join the party 💃🏻💃🏻🕺🕺💃🏻💃🏻💃🏻No bar humbugs allowed its Christmas 🎄 😘😘😘💕💕💕✨✨✨Shi xx
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Re: June 2018 Chemo Starters

@ktk Eyebrow hope! I've retained a few resilient individual hairs and lashes, but I do miss them. Keep seeing a naked mole rat when I glance in the mirror. Even found myself musing around the glitter make-up section at Boots today, trying to imagine some way to make myself look festive next week, murmuring, Which glitter would go best with my drain bag? I ended up with some sort of blue glitter lipstick topper, because it was cheap. So relieved and happy  to hear your report of the return of yours!

 

(I do have my eyebrow pencil etc. from the LGFB goodie bag, but no matter how hard I try, I always look like a doppelganger of my grandmother, who claimed that at some point she'd shaved off her unruly eyebrows and they just grew back more unruly, so from then on she drew them -- a doppelganger, that is, but for the buzz cut.)

 

Saw my BCNs today for my Pico vacuum dressing removal on the mastectomy / reconstruction side. Wounds are healing very, very well. My surgeon has left me with tight little scars that are positioned in such a way that I doubt I'll notice them in a year's time. Still a bit of swelling and some bruising, and ever so slightly raw (so I'll be covered a few more days), but all looks good. Because of the sort of surgery I had, the drain stays in for another week -- won't come out til the 27th. Can't wait. In other good news, the runs seem to have finally stopped today. Could be stopping the antibiotics, starting probiotics, or the combination of the two. Still waiting for word from the lab on whether I've had a recurrence of C. difficile infection, which might require some treatment. For some reason they tested for everything but that, even though the lab order was quite specific. At least  I know I didn't have salmonella, E. coli, or some odd tropical bug. 

ktk
Member

Re: June 2018 Chemo Starters

I was very excited to find enough eyelashes to put mascara on this week!! My head has a nice soft covering now and my brows are reappearing! On the down side, I have had to defuzz my legs for the first time!!!

Hope you are all doing well. Much love Kxx
Member

Re: June 2018 Chemo Starters

@RedRose Just recalled that if @Kip is done with RT, you must be done now, too. I hope it went okay for you, and that your wedding planning has been a good, dreamy distraction. Thinking of you.

Kip
Member

Re: June 2018 Chemo Starters

Yes Reddi, if I had wings I would have floated out of there at that moment! 

Kip

xx

Member

Re: June 2018 Chemo Starters

@Kip Cheesy is good! Especially right now. And I don't mean Christmas-time. Your children look so happy in the photo -- though not nearly as happy as you, the definition of bliss. You're glowing.

 

@SallyG63 I'm assuming that if you're taking your antihistamine at night, you're taking Piriton or another version that *causes* drowsiness (and so should help with rather than hinder sleep). Just thought I'd throw it out there in case you're taking an anti-drowsy form...

Member

Re: June 2018 Chemo Starters

Just on train to work now. Anyone else on letrozole? Ive been on it 6 weeks and have now lost more than half my hair (that I kept thru chemo) and have real problems sleeping. Went to bed last night and was still awake 6 hours later, hence only just being on the way to work. I've no aches or pains, that I didn't have before but itch like crazy at night. I've been taking antihistamines before bed bit it's not seeming to make a difference.
Kip
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Re: June 2018 Chemo Starters

Thanks everyone, I know the bell etc is a bit cheesey, but it definately marks a point in time and meant a lot to my kids to ring it with me.   Feeling emotional today still, hoping i can fend off the worry gremlins until after Christmas at least!

Kip

xx

Member

Re: June 2018 Chemo Starters

Lovely photo Kip and congratulations on finishing treatment xx

Shi Community Champion
Community Champion

Re: June 2018 Chemo Starters

💃🏻💃🏻🕺🕺🕺💃🏻💃🏻💃🏻💃🏻😁😁😁😁😁🎉🎉🎉🎉🎉🎊🎊🎊🎊🎊Kip fantastic lovely lady ❤️❤️❤️❤️Hope you rang the clanger off it 😘😘😘sent you pm the other day don’t know if you got it? Don’t forget to choose tune for club Tropicana thread, hop on over, dance floor, Sunbed and 🍹🍸🍹🍸🍹await 😁😁😁💃🏻💃🏻💃🏻🕺🕺🕺🕺💕💕💕✨✨✨Shi xx
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Re: June 2018 Chemo Starters

p.s. @Kip: I just saw that they mounted the bell right under the "Way Out" sign. Nice touch.

 

Ack! Edited to add: 🎊CONGRATULATIONS! 🎊

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Re: June 2018 Chemo Starters

What a great photo Kip. Shame the one with your OH didn’t work out but this is a super photo and so special. Congratulations on getting through active treatment! Xx
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Re: June 2018 Chemo Starters

@SallyG63 Gah, I snort-laughed at your comment. And that's even though I teared up when I read the quote on the bell when @Kip shared it. I'm a sentimental cynic or a cynical sentimentalist -- just can't determine which.

 

An American friend of mine -- diagnosed and treated for ER-, HER2+ DCIS a couple years at age 37, who just got word of something amiss in her follow-up scans and so is having an MRI-guided biopsy -- US shared a link to a poem, "The Fourth Sign of the Zodiac" by Mary Oliver, that she turns to at times. It wasn't my thing -- well, cynically and sentimentally, there were lines I liked and loved, and others at which I rolled my eyes -- but it might be exactly right for some of us...

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Re: June 2018 Chemo Starters

Oh is that why it is?

Is it like the cancer equivalent of the naff Rainbow Bridge poem for dead pets?
Kip
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Re: June 2018 Chemo Starters

Sally, Yes he probably was!   The bell ringing marks the end of active treatment.. there is a poem engraved on it which says  "Ring the bell 3 times well, its toll for all to say, my treatments done, the journeys won and now I'm on my way". 

Kip

xx

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Re: June 2018 Chemo Starters

Bloody Doctors!

Useless with photos. Is your son checking his reflection in the bell Smiley Happy

I don't get the bell ringing thing and why it's done.i
Kip
Member

Re: June 2018 Chemo Starters

I've done it and rung the bell (that's my lovely children supporting me)  did get the doctor to take one with my husband in it and when I got out, it hadn't worked!   Grrr.. never  mind nothing can dampen my smile today... hope the happiness lasts and I don't hit a low tomorrow... but for now... smiling!

Kip

x

Kip
Member

Re: June 2018 Chemo Starters

Ringing the Bell2.JPG

Kip
Member

Re: June 2018 Chemo Starters

Oh Sally nothing is ever straight forward is it, hope they sort the appointments... 12 hour days is not doable especially as they harp on about the fatigue kicking in!   And as for the mammogram... just grrrrrrr

KIp

xxx

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Re: June 2018 Chemo Starters

Planning was ok. Kept asking if I was comfortable and the answer was no but we could the position that was least uncomfortable. I have a problem laying on my back because I get cramp up my back.

Gave me my list of appointments and all bar about three would leave me having to get on a train at London Bridge in the middle of rush hour and not getting home till between 7.30-8pm. So that'll be 12 hous out of the house daily because I'll be working too. I have basically told them it can't happen and they need to move the appointments so I can be on a train before 5. They're going to see what they can do and send out more appointments so we'll see. Start on 7th January. Also got home to an appointment for next mammogram in my remaining breast for the beginning of February after I chased it up a few weeks ago. My last one was October 2017 so if I'm back to annual from every other year then I should have had one in October.
Kip
Member

Re: June 2018 Chemo Starters

Thanks for tips Sally unfortunately im so small i cant reach the door frame!!  Hope planning went well.  Im now booked in foe the Hope Movjng on Course jn February and also gots lots of information about other therapies available, may have reki and reflexology after xmas.  Was quite surprised to be told as a cancer sufferer uou are now classed as disabled!  And as such have all the benefit rightsnof a disabled person.  A sobering thought.  I aas also given an exercise dvd especislly designed for breast cancer patients to help with gettjng movement back and preventing lymphoedema.  So a productive afternoon. 

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Re: June 2018 Chemo Starters

Great new Jen, just what you need before Xmas.

Kip, door hanging is great for cording. I had loads of it after ANC and hanging off the door frame and walking backwards and forwards cleared it over a couple of weeks, especially if you can hang with the bad arm whilst rubbing cream in and massaging with the good one.

At Guys now waiting for my planning scans.
Kip
Member

Re: June 2018 Chemo Starters

Yayyyyy that is such good news Jencat!   So pleased for you.  Smiley Very Happy

Reddi - oh dear sorry to hear you have another bout of tummyness!   Hope it sorts itself quickly for you.

Kip

xxx

 

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Re: June 2018 Chemo Starters

@Kip I'd missed that they played the Titanic theme at your first RT. I would have busted up laughing, making it impossible to treat me. My OH and I got hitched at the borough hall and they'd asked us if we wanted any particular music played at the end of the ceremony. We said no, thinking that they'd play some Handel or something. We got Titanic. And this was 2008.
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Re: June 2018 Chemo Starters

Such nice news -- especially the sign-off on your CT scan, @Jencat. Woohoo! I can imagine it is almost overwhelming, getting all that good news at once. And @Kip, so glad that you have finally got a name and action plan for your arm pain. Now you can mend it! Hoping the same comes for the other aches -- or that they quiet as your body gets used to the tamoxifen.

@cdc Belated grrrrrings over the response to you complaint. I'll echo @Shi, however: fight the most important battles first. You've got a big surgery coming in less than a month, and you'll want to be rested up beforehand. I'd suggest doing the minimum now to keep your complaint alive -- and then, on the other side of surgery, go after them. But that's just me. You have to do what feels right for you.

My post-op update: it does seem I have a recurrence of the lovely C diff. -- that or some low-grade stomach bug. Going in to see the BCNs this morning. Think I'll have to take a car service to avoid jostling on the bus as well as reduce chances of having diarrhea in transit. At least my fever has broken and I have some appetite again this morning.
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Re: June 2018 Chemo Starters

Kip, your last post made me laugh re music played whilst havingscan/rads! Smiley Happy

Michelle and Kip, I had good news yesterday, CT scan was clear of cancer! (A bit of 'fluffiness' on my left lung, but onc said it was in the exact spot where I had rads, so it is inflamation from that and she's not worried) Onc said I'm now in remission and has discharged me! I wasn't expecting that as I thought before I started chemo she'd said she'd see me alongside consultant for a few years as I'm TN. Tbh, I'd rather I was still seen, but perhaps I should think of it as good news that she doesn't feel she needs to! xx

Kip
Member

Re: June 2018 Chemo Starters

Morning ladies! 

Michelle thanks for the response, funnily enough I saw the radiotherapy nurse yesterday for a catch up and she said I will see them again 4-6 weeks after finishing the rads and then it will be a mammogram and an ultrasound (sounds promising but I'll wait and see) 1 year after diagnosis (so May) and then regularly check ups after then. I think I am being seen by ONCs to check on progress with Tamoxifen too, so sounds the same as you.   It was good to see the nurse because I finally know that I do have Cording!!!   All the way from wrist to armpit.. .fabulous!   She showed me how to massage it gently and I am on the list for an appointment with the Lymphodema clinic so that they can have a go too.  So glad to know thats what it is.  She was lovely and I told her about the fear after finishing treatment and she said that its so so common but that they have lots of therapies and counselling and exercise classes to help and that I will always have an open door to Radio, Oncology and Breast clinic so I can call at any time for evermore if I need to chat or am just worried about something.  She said some ladies just come in when they are feeling fearful just to have their minds eased.   I asked about my aches and pains too and she thinks its chemo hangover  plus a bit of Tamox thrown in.. She said it should ease over time (not sure how much time mind!).   She also advised to keep a note of how I feel on the different brands of Tamox as some can make you feel different and you can request the chemist only supply you with the brand you like.

Reddi - I hope you are feeling ok today, sounds nasty and something else you can do without.  Take care.

Sally - That is a nightmare time for an appointment for Radio isn't it.. hopefully they can get it changed for you?

Well its the penultimate radiotherapy session today... still doing ok, not sure if I am feeling more tired.  I think over this last year I have just got used to feeling tired so its become the norm!   Had christmas music playing as they did the rads yesterday.. that was a very bizarre thing.. not sure entirely appropriate... as the song was "Simply having a wonderful Christmas time"  as a machine buzzed over head and routinely fired beams at me!   Oh well I had the theme from Titanic playing as I had my initial MRI so can't expect too much.

Kip

xxx

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Re: June 2018 Chemo Starters

Jencat I hope you got good results today. Sorry to hear you have been struggling emotionally. It is so difficult at times, although pleased you have found some therapies and counselling that has helped. I hope it continues to do so and hopefully good results today will help too.
Kip I’ve got a check up appt 6weeks post starting Tamoxifen with my onc to see how I’m getting on then I think it is a mammogram once a year from date of surgery. Mine is due in August. X
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Re: June 2018 Chemo Starters

Hi all,

Hope you had an ok loo trip Reddi and all's well now.

Cdc, I'm not surprised you're not satisfied with your complaint response though you should be glad you got one at all so quickly. Mine took 9 months and even then getting an answer, which was no sort of answer, was like pulling teeth. My response was similar to your, in among the blatant lies. It was deemed that the harm caused was 'moderate'.

Moderate my eye! Having to having 2 surgeries, the second of which may not have been necessary if they'd have got their finger out, and still being on active treatment a year aftr diagnoses and in constant pain and discomfort doesn't seem moderate to me.

In other news I have rads planning on Tuesday and they have sent me my first appointment for rads. It's at 4.30 on 7 January. That's not going to happen. They need to move it because I will not shoehorn myself on to a packed train (and at that time that's the only ly way to get on at London Bridge ). I'm on reduced hours at work just so I don't have to put up with that because between my painful feet and surgery damage on one arm and chemo damage on the other, I can't stand on the rain and have to sit down.
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Re: June 2018 Chemo Starters

Alas, I am not feeling well today. Had some shivers last night but just thought it was the cold weather. Woke up with a distinct facial flush and discovered I have a fever. Thighs ache. Lower back aches. I spoke to my BCN this morning and she advised regular paracetamol and visit to the clinic tomorrow morning to see if they should extend my antibiotics. However, my bowels have become overactive and my most recent visit to the loo was decidedly loose. So I am wondering if my C. difficile infection may be recurring. Now I have to decide if I call again... I think I will wait to see what next visit to the loo brings.

Member

Re: June 2018 Chemo Starters

Thank you Kip x

Kip
Member

Re: June 2018 Chemo Starters

Morning all,

Good luck Jencat with those results today.  Hope this gives you the all clear and you can move forward.  Its good to hear you are finding counselling and therapies useful.  I think we all need something to help us move forward once we are done with active treatment.

Reddi - how are you now, glad you got home!

CDC - well my dear what can I say!   How dare they!!!   What a nerve!   That is so out of order, after everything you have been through, all the information you have gathered and provided them with.   Don't let them wear you down Clare... when you feel good and ready you give them hell.   To blatantly get all those details wrong just beggars belief.   I really do believe that if, for one minute, they had to walk in our shoes, they would be taking these things much more seriously and understand how we need assurance and good honest guidance in every step we take.   To even insinuate that they did all they could and "tough get on with it" is...well... can't even begin to put that into words that wouldn't be taken down by this forum!!   Big big hugs to you... they better watch coz CDC is coming for them!

But on a better note CDC good to hear you have a date for surgery and are feeling confident with the new team.   How are you feeling now chemo is done, are you suffering any aches and pains?   I am stiff and achey in every possible joint know to man!   From toes to fingers!   Can't work out if its chemo, radio, Tamoxifen, menopause or all of them.  Just hope it eventually goes away.  Am just trying to focus on getting radiotherapy finished this week and then have a break over christmas to rest up a bit and then see what happens.  Don't even know what happens once I finish rads?   Whether I get a scan or something?  Anyone have any  ideas?  I know they said I would get a mammogram on the remaining breast around about the 1yr anniversary of my masectomy so that would be May time.

Kip

xx

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Re: June 2018 Chemo Starters

Hi Michelle, thank you for thinking of me. I'm ok, but still struggling a bit emotionally at times. I was offered counselling when I was having chemo and rads, but I didn't need it then and always felt I'd find it harder once I finished treatment and I was right. I've been having some counselling through Macmillan and that has been helping and also I'm entitled to 6 free therapies through a local charity and I've found that beneficial too. So far I've had a hand and foot massage, which was lovely! The therapist is an ex-nurse and comes to my house. I've found it nice to be able to talk about my cancer to her if I want to as I can't really talk about it too much to anyone else because I don't want to upset them or they don't understand as I 'look well'! 

I'm feeling quite anxious today as I'm seeing my chemo onc tomorrow pm to get the results of the CT scan I had 2wks ago. It was to check that the last few mm's of cancer has gone from my internal mammory chain. My chemo onc said she'd be surprised if there was anything still there when I saw her in the Summer, but I can't relax until I know for definite, although I keep thinking surely they wouldn't leave me for 6mths after the finish of rads if they were that concerned?! It's been difficult though to move forward when I don't know if I'm cancer free or not.

Sorry to read that you're struggling too and hope you find your counselling helps xx  

ktk
Member

Re: June 2018 Chemo Starters

I’m sorry to hear that CDC. You are strong. Much love Kx
Shi Community Champion
Community Champion

Re: June 2018 Chemo Starters

Cdc 😘😘😘firstly my lovely for the 🤬🤬🤬🤬you are feeling with a response like that. Time to get the gloves off, get all your ducks in a row and then leave them no wiggle room when you do fight this, but as a wise man once said to me fight each fight at a time and don’t take on too many fronts 😘😘you will succeed as you strike me as a 🥊🥊🥊🥊fighter. So pleased to hear you got kind nurses sometimes angels are just there on this journey and you had a couple just when you needed some kindness 💕💕✨✨✨Shi xx
Member

Re: June 2018 Chemo Starters

Oh CDC I am so sorry you have had such a useless reply to your complaint. Well done for fighting it, like you say you have enough going on so I really admire your determination to be heard by them and not to be brushed off. You are right you are worth more.
How are you feeling Kip? Hopefully a little better, I have only had one counselling session but have been reflecting on it a lot this week and I do feel better so if your hospital offer counselling I would highly recommend it.
Hi Jencat how are you doing? I hope you are well and moving on from the last year. I hope you have a happy christmas and healthy 2019 xx
Member

Re: June 2018 Chemo Starters

How are you doing today Kip? Hope you’re feeling brighter. I’ve felt lower than I have even at my diagnosis since getting the response to my complaint (which I was asked to make!).. so upsetting as it basically says ‘Tough s***t. Nothing shows up on your mammograms and there’s nothing we could have done about it as you aren’t BRCA so not eligible for additional screening so what are you complaining about? We’ve done all we could.’ Absolutely gutted- also I am portrayed in a very negative light- much of what is written is simply untrue including saying I cancelled the meeting arranged to view the images with the radiographer and surgeon by e-mail to the BCN on the day. Bizarre!! I don’t have her e-mail address and also I said I was unable to attend when the date was suggested in a very out of the blue phone call as I had a previous engagement. . It’s suvh nonsense! They even say I first presented at the unit with issues in my left breast. Errr no- I went with a thickening in my right breast. I didn’t feel antyng amiss in the left for another fortnight. I feel absolutely betrayed. However, once I’ve picked myself up and dusted myself off I will fight this. It is not good enough! My dense tissue was noted in 2009, my family history is extensive. Thankfully, I have always kept good records and I know of the NICE guidelines for MRI scans which say they should be considered iin Jose with significant history even if they are not known to have a gene mutation. Also my surgeon says my cancer was not an ‘interval’ cancer as this only applies when a cancer is found within the three years on the regular screening programme and not The High Risk annual screening. I have since sent the people investigating links to the government guidelines which detail how those on both the regular screening and high risk screening should be given a leaflet on first being diagnosed with a cancer between screening. I’m sorry to go on and on but I think it’s outrageous that I am having to inform them of National guidelines!!! I am hoping to organise a meeting with the investigating team next week. Aagh. As if I haven’t enough to think about and do. Sally did you ever get anywhere with your complaint???

On a totally different topic- my surgery is booked for Jan 14th!!! I will have a double mastectomy and will find out whether this will be TUG or DIEP next Wednesday. I had my CT scan today and was overwhelmed with how lovely the nursery were. I explained I hate cannulas and was told unfortunately the procedure meant the cannula was rather large. Another nurse was brought in purely to reassure me and so I could hold her hand! I felt myself tearing up at their kindness.