Hello November People (Nice to See RiversideDawn on here as we have been talking in another Thread xx)
History: Diagnosed DCIS Sept 15, Mastectomy 30th Sept (right breast with Immediate reconstrution, using the new Braxon technique), Results found a 7cm area of invasive, so Chemo for me, Then Surgery to remove Lymph Nodes, then Radio, probably very similar to many on this Thread. How many are thinking of using the Cold Cap ?????
Sorry to hear of your Aunt's death , some that you did get to see her.
I think the tablets do make you tired, at least to begin with. I am always exhausted, especially with the treatment as well. Can't wait for the day when I stop taking everything and get rid of all the SE's.
Take care. Marli x
Thanks Marli & Juls.
Have felt exhausted since starting the heart meds -no idea if that is normal?
My brother and girlfriend have been to stay -took me to see MIchael McIntyre -he was hilarious so a real tonic. 🙂 🙂 Can't beat a good laugh!!!
And on on the downside have just found out my Aunt has passed away last night -she had advanced Parkinson's. Am so glad I went to see her a few weeks ago and have fond mermories of a jokey fun afternoon. xxx
Morning waveylocks. I saw a cardiologist , who prescribed the medication but otherwise was a waste of time. Said it was up to Onc whether I was able to restart Herceptin. I did, however, have a wonderful cardio nurse assigned to me to monitor my medication for 3 months. She explained everything to me and answered any questions I had. Let me have copies of everything - echos, bloods etc. and took my blood pressure to monitor.
Still have 3 monthly echos (next one is 2nd Nov, just before next treatment) and have blood pressure taken at Chemo unit before and after treatment, so they are keeping an eye on me.
I am a little concerned about having only 13 Herceptin but trust the medics and my Onc comes back from maternity leave soon so will quiz her too. As I have a Hickman Line in (for the Perjeta) I must admit that I can't wait for the last one and if I do need to continue with the Herceptin will have it subcut for the last 5. Hate the hickman with a vengeance and just want my life back !!!
Good to hear that people are getting back some semblance of order to their lives, still check the boards everyday. Never be the same I know but we make our new "normal".
Love to all Marli x
Hey ange, sorry to hear about your heart, you're right this thing keeps on giving but like everything else we've gone thru keep positive & just keep on fighting !!!! Medicine has come a long way & you'll be mended in no time.;)
To all our niggles just give it the finger lol.
I had the flu jab last week & now have a hell of a cold coming on:(
Love to you all. Julsx
Lovely to hear from you. 😊😊 Am really pleased that your heart has recovered and they are pleased with your progress. 😊😊 Yeah!!!!
Am on an ACE inhibitor as of this week. Not been referred yet to cardiology -seems I got missed in the summer as my Onc was on holiday when it all kicked off and it now turns out it was a trainee doc on a rotation who picked my case up...so have been left and my Onc hadn't realised what had happened or even that I wasn't still receiving H. Am expecting a phone call sometime soon once he's spoken to a cardiologist as neither of us know whether to proceed or not with H.
I had chemo before surgery too & started H at the fourth round of chemo. Had half of the H injections so far.... The Onc said that the latest research was indicating that the subgroup I'm in has the best outcome with the full year dose. Although he also said looking at subgroups within research is risky as the stats becomes less accurate. Trying not to worry as no point but can't help it niggling a little in the background.
Reassuring to hear your heart has recovered. Are they keeping a closer eye on you now you have restarted H? How are they monitoring you? Xx
Hi waveylocks - sorry to hear about your heart and Herceptin. This happened to me in March after Echo and Onc suspended the Herceptin although still had Perjeta and referred me to Cardiologist. Have been taking ACE Inhibitors and Beta Blockers since then. I have never had problems with my heart before.
Anyway after another Echo it was found my heart had recovered and I restarted Herceptin along side Perjeta and had my 3rd yesterday. It is a worry because if they thought I needed it in November then I want it.
Think I will be only having 13 though because they are so pleased with the results they have had he is going to stop it when I have had 18 Perjeta. Because I had my surgery after chemo etc. they have been able to see the results.
Try not to worry too much and hope all goes well. Marli x
Thanks Sue -am told Sheffield is one of the leading centres for Cardiology.
That was tough for you and your Dad.
Hopefully the damage with mine will repair with time...feeling very doubtful about going back on H though. I guess it explains some of the fatigue I've been experiencing. Xx
Hi girls, the new November thread has started cannot believe it is a year since we were in the same place, look how far we have come........... we fought and won!!! xx
Tried to pm Daisy today and it says that name is not recognised if you read this Daisy will you let us know how you are? xx
Oh Ange that is not good news but the meds they give for heart problems are very good these days. My dad had his first heart attack at 44 and had 2 more before he died at 72, his mother had died at 37 from heart disease so I am sure without the meds he would of gone alot earlier. I know your's is different but they will be able to sort you too I am sure.......yoy have beaten BC so your not going to let a dodgy ticker get in the way. Hope your sorted soon xx
Got a bit of a shock at Onc appointment. Herceptin has affected my heart -reduced output plus damaged valve so he put me on heart meds. Onc going to consult Cardiologist re whether he should continue Herceptin or not. Sure is true the expression BC is the gift that just keeps on giving!! Or maybe I should say the treatment for it is!! haha!! Lol... So feeling somewhat gutted.... xxx
Dentist told me chemo would not affect the teeth as once through they are in effect dead but stress could make you grind and the gums could be a problem. Only had a check up last month and all was fine .....it must be my punishment for eating a biscuit haha x
Ah noooo Sue!! I had to have a crown as my tooth crumbled during chemo.....so far touch wood no further teeth. Think you've been very unlucky with two. 😒😒 lol... xx
Hi all, yes Ange I have been told no extreme temperatures too but also to avoid heat like sauna's and steam rooms but sure a one off should be fine I am going to when I go to centre parcs.
On another subject is anyone having problems with their teeth? I have just lost the second one in 2 weeks first was quite heavily filled and it just crumbled thus one I think is a crown and it just fell out whilst eating......omg hate the thought of false teeth xx
Yep Dawn -you're right. Found the Lymphodemia booklet BCC produce and it says to avoid extremes of temperature -so no plunge pool. Not bothered by that!!
Hadnt read the booklet as it's designed for those who have developed it. Anyway p17-19 are the ones of interest. Link below if anyone wants to have a read... Xx
Interesting Dawn.....well breastcancercare said plunge pools are fine!! Doesn't make sense to me. Will ask My Onc at appointment as it doesn't make sense!! Xx
To try to clarify this ongoing saga of spa rooms have rang breastcancercare.co.uk.s Helpline. The upshot is that if you have had your lymph nodes removed then there is indeed a slight increase of inducing lymphodemia using hot saunas, steam rooms, deep massage (light massage is ok) sitting near hot fires even.....argggh didn't know this!! On that principle I guess hot humid countries could come into the mix.....she says dryly! The thing to note is the emphasis on 'slight increased risk'. I understand that many women accept the risk and go ahead anyway.... Am not a keen fan on not disclosing so the Turkish bath spa have said they would need a letter from doc.....so will ask Onc tomorrow. What I don't understand then is why cold pool plunges are fine.....surely any extreme of heat isn't ok??
So having booked myself in for a Turkish bath experience followed by a fully body hot oil and exfoliating treatment I've ticked so many wrong boxes it's not true!!! Argggh.....clearly should have just stuck to crushed ice exfoliating treatment -that's fine!!! Haha 😓😓Xxx
Evening everyone 😊😊
I went for a walk too this afternoon -part of my get fit commitment. And oh my I've got a lot to do before I can be remotely called fit!! Huffy puffy up the littlest of hills & there's plenty of those here!! Haha!
Amanda -definitely see your GP. Caroline's right she will write on your fit note recommendations of what you need. My GP wants to do this on top of Occ Doc. I would look at your work contract -you should have some terms & conditions. If you are doing a phased return you may be entitled to full pay for a short period of time -in my case it's 6-8 weeks whilst this happening after that it's pro rata or at their discretion. So worth checking out.
Also have you looked at Macmillans pack called "Working with Cancer" -has really useful info. (You can download the PDF or order a hard copy) It has one for employers which might be handy too. I emailed the pack to my boss who found it really helpful. Made me feel less demanding on adjustments!! I would also ring Macmillian too as they maybe able to advise you.
Happy hol Sue!!
Am booking a spa day plus full body hot oils & exfoliating that's on offer for £49 in local Turkish baths -with complimentary hot/cold drinks. Yeah... Will let u know what it's like & then u never know u might all fancy a get together over here in the spa at some point...Not confessed my BC status -surely it's not relevant for that treatment but will ask Onc for a letter of approval when I see him Tuesday. Loved there being no mention of BC in the public arena when away -back here first thing that greeted me on UK soil was a fund raising stall....if only they knew!!! Xxx
Hi All, Enjoyed a lovely Autumnal afternoon walking in the woods today and an improntu coffee stop at my friends on the way home.
Off Nordic walking at the Haven tomorrow then acupuncture and meeting another young women with BC for a coffee after that so it will be a busy day.
Amanda I would use your GP when you go back to work, as you haven't got an occupational health service. Your GP can now state how many hours you can work and any changes to your working environment on your FIT NOTE.
Have a good week all x
Hi girls just sitting up in bed watching TV witha nice glass of chilled pinot, my latest trick was to wipe the downstairs TV of all programmes........no idea how and probably couldn't do it again haha. Caroline good luck with injections hope they are good for you.
Lovely wedding to look forward to Ange and yes it gives you something to focus on I keep saying need to diet no good now as going away but then it wil be may as well wait till after xmas!!
Amanda hope you have agreat holiday, getting paid when you go back depends if you have used all of your sick leave allowance....I have so will only get paid for what I work but don't forget you can earn up to £104 per week for up to 16 bhrs and still get your ESA.
Juls I agree re centre parcs not going to tell them, only plan on having the 3hr session in different pools not massage etc so will keep quiet.
Dawn hope all okay with you, and Dafoddili notbheard from you for a while hope all okay with you too xx
Hi amanda, my daughter works in gp surgery & says best to check as it differs. My gp dont sign u back to work- you just go but some still sign u back!!! When i started back i only got paid for the hours i worked so as i had a years worth of holidays to take i put them in to fill up the missing hours so i could get full pay. Surely you must have a load of hols to take thru entitlement.
Ive booked spa sessions when i go to centre parks & i will not be declaring bc. The folk at my cancer centre say they have had specialist training but massage is still the same, it is best not to have arms done & if u want u can sign a disclaimer!!!! I still think best not tell them, its too much hassle otherwise. Why should we put up with this s..t just to get a spa when we feel we're getting past it all!
Have a lovely hol. Wish i was going to the sun.
Take care all, amazing work is the new focus :). Love to all. Julsx
Caroline -good luck with the injections -hope they do the trick with minimal side effects. Can't believe you're a year post treatment -wow. It's only 7 months for me -not that am counting!! Haha. Good for you getting the referral to a psychologist. A friend of mine found hers very helpful.
Sue -good for you setting up your return. My OH doc has recommended 2-3 mornings to start with. Start back after the October break. Hoping to meet with my boss soon - will seem strange. Happy hol in Zante....
My son has announced his marriage date next summer so am really looking forward to that. 🙂 And a good thing to aim for re the need to get excess weight off & get fitter!! 🙂 So holiday over time to settle down and focus!! 😊 Xxx
Glad you enjoyed your holiday Amanda.
I had another oncology review last week and after a long discussion I managed to persuade the oncologist to change me on to Zoladex injections, this is for me to try and acheive a better quality of life, as I feel the tamoxifen is restricting me. I had my 1st injection yesterday (had it on the chemo unit so that was strange going back a year after my 1st chemo), so far so good. Within 3 weeks my body will think I have had a total hysterectomy.
I have to continue taking tamoxifen for the 1st month and then reluctantly the oncologist has agreed I can stop taking anything extra and just have the injections for 2 months and then be reviewed again in clinic.
At this next review we will decide on whether I continue with the injections, and which additional hormone treatment I take either Tamoxifen or an Aromatase Inhibitor.
Psychologicaly I'm making progress, I've got myself on a counselling waiting list, the oncologist is refering me to a psychologist and I've signed up to a regional Peny Brohn course.
Work wise still waiting for official confirmation of the new job, but they have now collected my references.
Have a good weekend all xx
Morning all hope everyone is okay? Ange glad you had a great holiday Italy sounds lovely only bee once when I was 14 so many moons ago. This massage saga is a pain, most places I have tried won't touch you once they know about BC lickily I have my own lady/friend who comes to the house to do treatments for me si can have what I ask for but my BCN did advise not to let anyone massage my arm. Just booked for centre parcs between xmas and new year and was looking at some of their sessions/treatments but H&S rules say must have note from GP to say you are fit if had chemo/rads in past 2 yrs. So £35 for letter of GP and £42 for session think I will give that a miss or just omit to tell them!
Only 5 days then off to Zante for a week not somewhere I would choose high season but it will be quiet so late in the year just want a little break before I go back to work. Had consultation with OH and they have advised 2hrs x 3days a week to start which suits me fine so told boss I will do that for 2 weeks then 3x3 for 2 weeks and that way I should be able to keep ESA spoke to them and we can work up to 16 hrs or earn £104 per week and still get it so may as well make it beneficial. Not going to work and be worse off.
Anway better shape myself not dressed yet having a lazy morning....just for a change haha. Have agood weekend Love to all Sue xx
Thamks for the info -really interesting. Am massaging some special oils into my scalp now and noticing a real change.
I hadn't realised there was such controversy until this discussion cropped up -I've always been a keen fan of massages not only for relaxation but for promoting/stimulation of the processes in the body so your words give me the confidence to go ahead without worry -thanks😊😊
Back late yesterday from my hols!! Was fab -weather was amazing up in the mid to high 20's C throughout. Not exactly a relaxing hol as was up every morning at 6.30 as out on tours. But loved every moment. 😊 Xxx
Hi Testrix, lovely to hear from you after so long and thanks for the advice re massage I agree with you and hopefully everyone else will. We had a lovely day together last Saturday and hopefully we will do it again. How are you doing hope all of you treatment has now finished and you are feeling well? Sue xx
Hi all - I must admit I haven't been on this site for a few months - but it is interesting that the topic of massage is popping up when I do have a look... I am an aromatherapist, and give and received massages. I worked all through my chemo last winter - and massaged by scar area regularly from as soon as the dressings came off with a mix of oils that I knew would promote the healing of the scar tissue and help prevent the build up of adhesions. From February I massaged my head every other evening with a mix of oils that successfully promoted hair growth (having lost very nearly all my hair after Tax, I have had to have it cut 3 times already and everyone says how quickly it grows). Massage DOES NOT SPREAD CANCER. Whilst deep tissue massage will be inadvisable over a tumour site, or any area affected by radiotherapy, or at a site or time when the possible inflammatory response would not be beneficial, the benefits of a gentle, relaxing massage are well documented and researched. I have also found that deep massage in my back and neck have really helped with aches and pains for the last 6 months. I have no hesitation in massaging ladies and gentlemen with cancer, or recovering from treatment for cancer, as I know that I can bring relaxation, comfort and a wonderfully supportive 'touch'. So long as you ladies can lie comfortably on your front, I don't see any problem. Caution is obviously required, if there are side effects such as lymphedema, and I always discuss individual issues, such as other drugs being taken, body image, pain levels etc , but I can usually give some level of massage. I have a wonderful text book - 'Medicine Hands - Massage therapy for people with cancer', in which it says 'There is no evidence to suggest that touch or gentle caring massage causes metastasis, but there is proof that it greatly benefits many cancer patients, both physically and emotionally..Scientific research and anecdotal evidence have shown low impact massage to positively affect symptoms related to cancer or side effects from treatment regimens such as nausea fatigue insomnia and pain' I hope that some of this provides comfort to those of you who are unsure about having a massage - I really recommend !! It might well be a few months before I drop in again - but very best wishes to all of you!
Thanks everyone for the positive comments 🙂
Am sorry you are having a rough time Dawn. The psychological impact is insidious and mean. I do find all the advertising plastered everywhere plus collections going on in the street a never ever reminder of BC & what I/we have been/ are going through. I find that so frustrating as I REALLY don't want to be constantly reminded...sigh...& it's everywhere not just in jolly October.... Amanda that is disgusting what that man said!! OMG -I'd complain to the charity he was volunteering for. How dare he!!
Been to see plastic surgeon. He is delighted with my ample tummy and proclaimed with great delight he could probably create another E cup breast for me to match. I looked on in horror as frankly I don't want big breasts. Fancied the opportunity of going a little smaller....he was a little surprised when I commented -obviously he's not endured the hefty bra's and red marks that goes with large breasts! As there will be no feeling in the new breast can see little point in it being big!! I don't have any feeling there now without one either for that matter!!
I've put on 10lbs since finishing chemo!!!! Argggh. So post hol have to settle myself to some serious work both food and exercise to address this. He also told me my weight was at the upper end limit for surgery.....my oh my -didn't realise I was that large. Sigh. Last surgeon told me not too loose any or there wouldn't be enough flesh!! -so clearly 10lbs+ has moved me from the bottom to upper limit??? Haha.....😊😊
Also finally got appointment after hol to see Onc re the lovely Herceptin. -to have or not have...so that's my fill of b***** BC for a while -thank goodness!! Yeah!! The plus of it all is meeting amazing women.
Amanda and Sue -hope you both have a great hol!
Big hugs to all you fab girls!! xxx Ange
October might not be fluffy or pink but my hair is!! First visit to hairdresser today for a trim -he popped a pink wash on it -love it!! Don't panic only a hint of a tint & ive got a bottle of the stuff as its only a wash'ngo one. But it's good to not have white!!
Am off to Sorento in Italy Sue -leaving home at 4am on Friday.....yikes!! Can't wait. Mid to high 20sC am told. Either way I'll be languishing in the shade pink tresses covered!!! Tomorrow shall collect new prescription glasses which are purple.... & orange sunglasses. Sue Pollard here I come!!! 😊😊😊 Haha
Hope all is well with everyone. Hugs xxx
Morning all, hope we are all okay bit miserable here this morning after the last few days so roll on Zante I can't wait. Where are you going Ange? Hope you have a lovely time it just nice to get a change of scenery I think. Got a call from Occupational Health yesterday and I have a telephone interview on Thursday pm so that should be interesting will let you know. Glad you got things sorted Caroline hopefully all will go smoothly from now on. Off for a swim now then picking daughter up from work at 12 so better get a move on. Have a good day all Sue xx
Thanks Caroline -starting to get excited now 🙂
However the hair products are gone for good -no one handed them in so somebody is enjoying Lush products for free at my expense....lol 😞 Ah well....my own stupid fault!
Fingers crossed ( and toes ) re your new job. Hope Occ Health are supportive and back you up. Difficult to know how they wont as you disclosed on your application form...but completely understand your hesistancy to celebrate until you get the confirmation. I'd feel the same way... Ange xxx
Hi, hope you found your hair products, and enjoy your holiday,
I've been to speak with the lady who offered me the alternative job, and gave her the facts, she can't see any issues and so will start the formal recruitment procedures. So keeping all fingers crossed the job is mine pending occupational health clearance and references. Might start getting excited.
Hope we are all well Cx
Well done Marli with the Herceptin. 🙂 Hope it continues to go well. Big hugs. Enjoy your trip to Manchester.
Don't know what is happening with restarting my Herceptin treatment.....still not heard despite my phone enquiry beginning of last week. Going on hol on Friday for a week and wanted to get appointment to discuss with Onc before I go. My current appointment is end of November (made before they took me off H). Perhaps they've decided not to bother to restart but be good to know!...lol. Been off H for nearly three months now.
Anyway popped into Lush today Caroline and got the hair products (thanks!!!) very exciting.....can't wait to use them though I've now got to track them down as I left them in another shop somewhere.....argggh!! Hey ho.... Xxxx
Hi all. Was lovely meeting you all. Dont see the problem with spa & cancer as i have a back & shoulder massage every week. I knoe its through a holistic cancer centre but she doesnt do anything different to an ordinary massage centre!!!!! I think they use it as a cop out. Im going to centre parks in nov and am defo going to have spa day even if it means me not mentioning it to them!!! I'll ask the girls at the holistic centre about it next week. Hope you all had a relaxing sunday. I went for a long walk as it was beautiful weather. Just got home & trying to get ready for work tomorrow 😞 I enjoyed this weekend very much. Take care, lots of hugs. Julsx
Thanks waveylocks. I'm not bad restarted Herceptin 4 weeks ago, had 2 so far and seem to be doing ok. Just some small niggles and fatigue. Off to Manchester with my Pilate's girls at weekend so hoping I can keep up.
I was having a luxury pedicure and the therapist said she could not do the massage (so a file and polish then !!) so I quoted the Macmillan Complimentary Therapies booklet at her and said I would sign a disclaimer, which she accepted with bad grace. I am having massage at the Chemo unit on a regular basis anyway.
How are you doing? Marli xx
Thanks Marli on both counts! Will have a nosey. Am meant to be organising a day trip to a spa for a friend and myself....had no idea it was a problem post active treatment.
Lovely to see your post Marli. How are you?
Sue -I was the same woke up three times last night -running to the loo -must have been the booze -my bodies not used to it these days....lol.
Morning all, lovely to meet you all yesterday I really enjoyed the day...was shattered when I got home but then didn't sleep well at all but no doubt I will catch up. I have just booked a week in Zante for next month......need a bit of sun sea and sand ( and lots of vino haha) if I am going to go back to work. I am definately up for a spa break if we can find one to treat us I will have a look around too Dawn and see what we can come up with. I am with Ange on riding...no chance of that haha.
Nice to hear from you Marli, hope you are keeping well?
Beautiful day again so I can feel a lazy day in garden coming on.....enjoy your Sunday everyone Sue xx
Hello ladies - glad to hear that you had a lovely time in Manchester. ( I am off there at the weekend for a girlie weekend.)
Regarding spas, there are some spas that have staff especially trained regarding cancer and clients. My son bought me a voucher for Rockcliffe Hall in County Durham for Christmas, before my dx. As I have a Hickman Line until February have had to delay going. However , it turns out that they are one of the spas that do have some one who is "cancer trained". Might be worth looking at their website. Marli x
Glad you got back in time Dawn. Didn't know about spa's &BC. Flipping heck BC interferes with far too much if you ask me! Grrrr. Why on earth would a spa be reluctant???
Re horse riding -you're far ahead of me on this one Dawn....oh my -all I can say is that the spirit's willing but am afraid body has copt out (maybe that should read "conked out" -haha) so no chance there unless I get a body transplant......might manage a slow donkey walk on a beach though!!
Nightnight everyone xxx