May chemo starters 2018

[JemPD]

Tropic_al good luck today- last one 😊😊😊 we’re ringing the bell with you 🛎🛎🛎and waiting for you to get off the plane in Greece ☀️
How is everyone today?
I’m doing ok so far with se- taste buds gone, drugged up on pain relief before bone pain starts - on consultants advice- feeling a bit out of it but I’ll take it rather than 90 year old lady!
I’ll send you all private messages re Facebook in a couple of days when se over - feels so good to think no more nasty se 😊😊
Tuesday PICC line out and ct scan ready for rads.
Xx

[JacqB]

Hi Linda
Good idea to move offices but it’s s true that you cannot dodge the germs. I caught a nasty cold and cough and I’ve no idea where from. Could have been anywhere as I have no memory of being around a sneezer!
I have no idea when my radiotherapy will start. Because I’m still on ROSCO I still have the prospect of four more chemo once my surgery has healed. I’ve been told to expect more so I’m just going with the flow. ROSCO has been a bit of a double edged sword for me. I’ve enjoyed ed the break from chemo but it’s added weeks to my treatment. But I’m ok with that, I knew what I was getting into from the start. I would imagine your rads will be long before mine. I will be interested to know how you find it.
Be well, stay strong 💪
Jacq x

[Tropic_al]

Hi all,

so sorry for my radio silence. I have been feeling good so decided to re-join society a big and have been out for dinner with friends a couple of times, went to the coast for a day, bit of gardening, work and had a friend to visit overnight..a bit of normality after a long dull summer. Brought down to earth last night as took my pre chemo steroids yesterday and only got 2 hours sleep last night ..not helped by snoring next to me 😡 So up very early. Final chemo is today 🎉😁, no bell to ring at my hospital but will do it in my head. Have baked a cake for the lovely nurses who have been amazing. I can't say I'll be the last time I go as on Herceptin and permuzutab for the next year so I'll be back every three weeks till next July..deep joy! My rads only start in Oct sometime so I too am looking forward to Christmas and saying goodbye to this crappy year.

so much to catch up on from you lovely ladies.

Hets..well done on finishing chemo, I'm joining you in Greece today.

JoandBasilthedog- hope you are doing well after your last chemo. I'm sure you look amazing in your bandana..that's what I keep telling myself anyway and I have actually been given compliments! Good luck with the Herceptin.

JacqB- hope you're recovering well after surgery and the PICC line issues are resolved..what a pain. agree it's best to let the nurses look at it.

Linda- another chemo finisher..yeay..hope you're feeling ok. I also have Ondonsatron and it is not great on bowels. Take Laxido. I'm on permuzutab and that gives you diarrhoea so I am all over the place..hideous!

JemPD- well done on chemo finishing..we're all getting there. My muscles are weaker too and Herceptin doesn't help so I'm going to increase exercise once the bad week of chemo is over..more walking, some cycling, assisted circuits, yoga etc..got to get fit. My rads only start sometime in Oct so just focus ing on this last cycle at the moment. For me a Facebook group would be great..much easier for most 😊.

Tanya- also in your last cycle..well done. Sorry to hear that your nails are lifting. I have dark nail polish on so will be gutted if they come off now too. Hope they grow back quickly. 

Michelle21- I'm also going to get Nioxin2 which was recommended by my hairdresser.

i think I've caught up now! Breakfast now..more steroids then heading to the hospital for a heart echo, Herceptin and chemo..fun fun.

Take care all and I'll be in touch after chemo

Tropic_al X 

[Shi]

Hi Linda, please be careful just in case she does have a cold starting, there’s a lot of them going round at the minute and you’ll be nadir days 7-14. Use antibacterial hand stuff all the time and wrap a scarf round your face if you do brave it out and keep good by into work but glad to hear you moved office just in case. Keep safe 💕💕✨✨✨Shi xx

[Linda Corinne]

Someone in my office has almost lost her voice so I asked her if she has an infection but she doesn't know she has had hay fever all summer. So I have moved offices just in case. Does anyone know if this is likely to be an infection as I never know what to do for the best. Oncologist said not to worry as you cant isolate yourself to avoid infections.

Jacob did u get an appointment for radiotherapy? I know it's a while off but not got anything in writing  yet re next treatment details inc operation. Ta.

[JemPD]

Jacq - so sorry you had such a bad experience with district nurse 😢. Good to have a chat with bc nurse tomorrow. Take care xx

[JemPD]

Well done on joining us in Greece🏖. Be kind to yourself over next week or so- but this the last time we will have se 😊🎉.
So pleased your bloods were good to go 😊

[Michelle21]

That sounds awful JacqB. Can you call the district nurse office to complain. It’s totally understandable that you are feeling fragile and should feel anxious. I’m really quite protective of myself and feel like I don’t want to suffer any unnecessary pain or discomfort even something minor like a nettle sting. X

[JacqB]

Congratulations Linda on finishing chemo 😊💪

[JacqB]

Thank you K, I will ring my BCN in the morning just to check xx

[Linda Corinne]

Wey hey chemo done and dusted! Been told I shouldn't have taken an anti sickness pill on T which causes constipation! Just the as and when one on day 3 so Fri sat or sat sun depending on when I usually feel sick. Not happy re suffering constipation when not necessary! Just need to tell anaesthetist the anti sickness works so can take post and ask for laxatives. x

[ktk]

Disgusting Jacqui. Perhaps give chemo line or BCN a ring just to reassure you. I’ve had my Picc line since June and they are always most careful with it. The hospital may well want to check it hadn’t been dislodged. Lots of love Kx

[Michelle21]

Thanks Jem, recovery from op going well. I have just been recommended Nioxin 2 shampoo, conditioner and scalp treatment. Apparently it strengthens hair from the root so it comes back stronger. X

[JacqB]

I’m flippin fuming!!!
Just had a visit from a district nurse to do my PICC flush and dressing change. She ripped off the old dressing and stern strips with gusto making my skin bleed then used the cleaner with such force where the line enters the arm that it pulled out at least 1cm. I flinched and said that my chemo nurses are very careful not to move the line and she just said it’s fine, they always move and I shouldn’t be so anxious. I’m anxious because I’ve been told the line should not be moved. Feeling very fragile two days after surgery and really don’t need to be reduced to tears by a district nurse.
Rant over
😡

[tanya]

@joanandbasilthedog congratulations on your last chemo xx hope everyone is doing ok. I am now day 13 of last chemo and have now lost four finger nails it's as though as soon as one falls off another one lifts. I wore dark nail varnish all the way through but obviously one of the unlucky ones. I have got a nail growing underneath and they are pink but only half way but they aren't sore thank God but can't do buttons or opening things very well x radiotherapy starts on the 17th so patiently waiting to start. Hair still growing slowly. I would be up to joining a Facebook group it would be nice to put faces to names. All my love to u ladies stay strong xxx

[Linda Corinne]

Facebook best for me as not got whats app and no room on phone to download it atm.

[Shi]

Hi Jem. It’s the lush bar called new it’s like a red dot, it’s been brilliant at getting our hair back and also rub Jamaican black castor oil on too prior to washing for about 20 mins it also helps 😘😘💕💕✨✨Shi xx

[JemPD]

Tanya - hope you are over se now and lost more nails. Any more treatment for you?
Joaquin and Michelle - hope recovery from ops going well- keep up with excercises.
Tropic _al - is it last chemo today?? If so hope goes well.
Linda- hope those bloods are good to go today then last chemo 🛎🛎😊🎉
Joandbasilthedog - hope se ok, I’m just tired after taking my daughter to her first day at Junior school - all went well. Plan for today - rest and then a walk to see the sea.
Shi - there was mention of a Lush bar for hair recommended on Oct thread - can you let me have the details again as can’t find info- thanks
Whilst we are all in or nearing Greece and lying around in the sun before next treatments wondered if we should set up private Facebook page or WhatsApp group then we can keep in touch and sort meet up for the new year. I’m happy to set up a Facebook group but not sure about how to WhatsApp . Let me know your preferences.
Xx

[Michelle21]

Yes thanks for the recommendation I have watched it too, it’s really interesting.
Well done to all of you who have finished chemo, you can breath a big sigh of relief and you will begin to feel like you again before you know it.
For those of you still going, you’ve got this, not long now xx

[Linda Corinne]

Just posted to say I watched the jules peters doc. I could only watch the second one. Wow. Worth watching it Def!. X

[JemPD]

Thank you Shi , thank you for keeping us smiling on the long journey to Greece. Enjoying the sunshine and singing to I’m still standing 😊😊

[Shi]

Jem and Joanandbasilthedog 💃🏻💃🏻💃🏻🕺🕺🕺💃🏻💃🏻💃🏻💃🏻🛎🛎🛎🛎🎉🎉🎉🎉🎉🍾🍾🍾🥂🥂🥂🥂captain costas has given you salute from the cockpit and his brother spiros has got your Sun loungers ready by the pool ❤️❤️❤️❤️ Very well done 💪💪💪💪ladies 😘😘😘😘 got to be a bit of Elton john, I’m still standing on the jukebox for you ladies 💃🏻💃🏻💃🏻🕺🕺🕺💃🏻💃🏻💃🏻😁😁😁😁😁💕💕💕✨✨✨Shi xx

[JemPD]

Joandbasilthedog 😊😊🎉🎉🛎🛎well done to you - sorry about the cannula - sounds painful. But we did it we’re in Greece - we made it. 🎉🎉Time to relax on the sun beds and sharing cocktails before we face our next part of the journey. I hope se are kiind to us both but more importantly the drugs work their magic.
Do you have clots too?
Today wasn’t an easy day. The cold cap was really really hard- had frozen bits on my head when we took cap off. After the chemo bag finished I was unexpectedly really emotional and the water works came - haven’t cried since surgery😢. Then I was violently sick 😖not happened before. The nurses were especially lovely today. They don’t have a bell up but brought it out of box for me to ring 🛎, Hubbie rang chn at my parents - they then rang bells loudly to celebrate 🛎🛎🛎. But I’ve done it I’ve finisjed 😊😊🎉🎉🎉. Absolutely exhausted now.
Linda - hope all you’re eating will do the business for tomorrow. Good luck for tomorrow- you can do it. The warm sunshine in Hreece is lovely. We are saving a bed for you and the rest of you lovely ladies as you cross the line.
Herts - what did you do to get your head round all this? I’m booked onto a moving on course in October - is there one in your area?
We all still have the next part of our journeys to go but thank you to you all for your support and kindness so far.
Jem xx

[Hets67]

I’ve been told anything - just stuff your face lol

[Joandbasilthedog]

So rang the bell today 🛎🛎🛎🎉🎉🎉 but in true me style rang it the wrong way first . I also managed to pull out my cannula by getting it caught on my handbag .. cue lots of blood and chemo drug and then when second cannula put in walked to the toilet forgetting my drip and practically pulled it over . The poor nurses ... they were amazing as always ! Back in three weeks for first of year long heceptin injections but still got to ring bell for this lot . Bk tmw for scan on blood clot .. fingers crossed for nothing there . Hets hope you get scans ok .. linda good luck for tmw .. jem hope all went well today .. hunka down for next ten days and jacq b congratulations on your surgery ..hope you are resting well. hope i will be there soon ! Xx

[Linda Corinne]

Yes i am eating greens fruit juice manuka honey. Is that what u mean or just anything?

[Hets67]

@linda I have been told b4 and it’s proved itself with others that u shld stuff ur face b4 blood test and it really makes a difference to the result 👍🏻👍🏻🤣🤣

[Linda Corinne]

Neuts are low again @ 8.4 so have to go in an hour early for a blood test so fingers crossed as don't want the last chemo to be delayed! This has happened twice before & they have gone up both times & so checm went ahead as planned. I really don't want my op to be delayed either!

[Hets67]

Btw I don’t know if any of you have watched tj two documentaries on iPlayer following Jules Peters through her treatment for BC. I found it helpful when I watched it about ten days ago because it follows her all the way to the end and her positivity is great whilst it also shows some (although I suspect not all) of her vulnerability.

[Hets67]

Jo&basil it’s a horrible feeling not having direction isn’t it. What I’ve found is that I’ve had to spend some time getting my head into the space where I am now, as much as possible, owning some direction and planning and any residual hospital stuff (I’m also still waiting for scan results for example) needs to slot in with me rather than the other way around. That’s really helping. Re blood clots, it is a worry - Tamoxifen does come with risk of blood clots and cancer itself increases risk of blood clots apparently. I could go on medically induced menopause (I am nearly there anyway) and then the other drug which u take post menopause, but decided with the onc that I just wanted a few months clear of drastic treatment which the menopause inducement thing is, and then i’ll probably do it. In the meantime I’ll b injecting daily for at least 3 months anyway so that should avoid any clot getting stuck anywhere nasty.
JemPD fingers crossed you get through it with no hospital visit. Really interested in any advice on how to get muscle build up back - I still feel like a telly tubby!
JacqB you did it!!! Well done and looks like they let u out same day which is amazing!! Hope they gave u some strong painkillers to get through the night!!
We are all getting there aren’t we which is amazing, albeit it does feel like the next few months will b a mix of different things going on. Roll on Christmas I say - only 112 days to go 👍🏻👍🏻🎉🎉🎊🎊🎊

[JemPD]

Herts - great to hear from you, sorry you've struggled but next steps here you come- hope the tamoxifen settles down quickly.  Hope the speed boat is fast as we will be joining you in sunny Greece. Joandbasilthedog and I will be there tomorrow, Linda on Wednesday and others too very soon 😀🎉🛎

Joandbasilthedog - hope all goes well tomorrow. It's hard not having a definite plan, especially after chemo that was very structured. Focus on this cycle and 🛎.

arrived home from hols Sunday evening, it has been great having quality family time. Back to earth with a bang Monday morning- pre-assessment, consultant and then met with new consultant re rads! Bloods all ok so green light for tomorrow. consultant was helpful re se of bone pain, very sore mouth and temperatures, but after 2 hospital visits in last 2 cycles on the same day (Saturday) suggested I pack a bag for Saturday 😥 but also made some suggestions for pain relief. I know that if my temp rises I have to get checked out, not taking risks at his late stage. Good news PICC line comes out next Monday (keeping in just in case Casa NHS calls!). This means 6 clexane injections to go😀- Hubble has been a 🌟 stabbing me each evening since cycle 1.

Over hols noticed my muscles are much weaker- consultant really helpful on how to build up.

So tomorrow last one 🎉🛎Last cold cap🎉 But really not looking forward to se. My 10 year old was sobbing his heart out this evening cos he doesn't want me to have nasty se(made me well up). The children are planning a party for the 5 of us in 2 weeks - chocolate meal and pinata have been suggested so far! Hopefully something positive for them to focus on.

rad consultant was helpful- so starting 24th Sept 15 sessions and then active treatment done😀😀. Trying not to think past next 10 days at the mo.

Love Jem xx

[Linda Corinne]

Glad it went well Jaqb. Been thinking òf u. I have last chemo on wed all being well and my ops soon too. X

[Shi]

Jacqb 😘😘😘 you are doing amazing beautiful well done and rest up now, don’t do too much too soon ❤️❤️❤️You’ll soon be 💃🏻💃🏻🕺🕺💃🏻💃🏻💃🏻To 😎😎😎rads💕💕✨✨Shi xx

[JacqB]

Hi ladies
I’m currently resting in bed on my V pillow catching up with all of your news after surgery today. I’ve had a wire guided WLE and axiliary node clearance. I don’t know what drugs I’ve had today as they lost my discharge letter, but they must be the good ones as I am feeling no pain at the moment. Long may it last 🙏 it seems that we are all at different stages now so best wishes for all of your treatments, surgeries and drug therapies. And let’s hope the emotional moments pass quickly
Hugs to all
Jacq x

[Joandbasilthedog]

Hets so great to hear from you .. was worried .. think the end of chemo has profound effect and its not all champagne corks and celebrating .sometimes the anormityof it all hits . Its my last tomorrow and yesterday felt really low not sure why but seeing oncologist this morning wasnt that much help as still waiting for dates of scans then the appts for decisions on ops ...i need direction .. all he could tell me was you are coming back in three weeks for heceptin injections .. not his fault .. just system doing his thing ..i just want to get moving and bk to work .. i popped into school today and that was a positive experience.. lots of hugs and telling me i looked amazing ... ( in my bandana i looked rough as😂) but felt good ..so hets glad port is out but alarmed you are feeling effects of tomoxifen already ! Also interested about you having blood clot and still being on it ? I have factor v leiden which is a predisposition to blood clots ( had one in my teens) and i am being sent for clot scan ( another wait) . Some research i have done via here some people have been told not to go on tomoxfin because of the clot risk . Anyway i hope you feel better soon and after my next lots of se will have to meet for tea and cake !
Jem ...last one for you tomorrow too? Is it rads after ? Hopefully your kids will be at school so you can ride out the side effects in bit of peace and maybe we will have to tea and cake too ! X
Hope everyone else doing fine too ... its September !! I love autumn 🍂 sunshine without heat ... hopefully! X

[Hets67]

Hiya I’m so sorry I’ve been radio silent. The sudden end really hit me hard for some reason and I needed to get my head around it. I’ve also started taking Tamoxifen last week - early SEs.....aching joints, particularly in the evening I feel about 90! But I’m feeling more positive today - I had my port-a-Cath out under a local anaesthetic which was a v surreal experience but it does feel like a really positive landmark. Im having problems with the vein they used to deliver the last lot of chemo 3 weeks ago - started getting gradually more swollen and sore over the weekend and this afternoon there is redness on my arm running the line of my vein from my thumb to where they put the canular in - so the consultant has given me antibiotics just to be on the safe side. So yeh, getting there 👍🏻. Can’t fly anytime soon because of the blood clot so I’ve hired a speed boat to get me to Greece 👍🏻💃💃💃💃

[Shi]

Hi Linda, you need your normal cup size and then go 2 up on the size of you are a 36 get a 40 if you get the zip front m&s ones. The cup will be bigger after your op on the operated side but you will be bandaged up and a bit swollen from the op, so getting the larger size is more comfortable and I kept mine on all the time for about a month after the op till everything settled which was why I got a couple, hope that helps ❤️❤️💕💕✨✨Shi xx

[Linda Corinne]

Shi I am still confused re the bra size as if I got a larger size it would be too big for my boob that I am not having surgery on? I looked at expanders yesterday but havn't ordered any yet as the colour is not the same although I guess that darb blue & turqouise were not the best colours to choose! x

[Shi]

Hi Linda, I slept on my back with usual pillow under hear and another pillow at the side of my on op side so I could keep my arm at me side and at good height so is didn’t pull on anything as I lay on my back if you know what I mean. I know ladies have used v pillows and also those bean filled emoji cushions have been a great hit on the threads for post op too, some ladies get the 💩 ones to take into hospital with them, just to get a 😂🤣😂🤣it helps on the comfort front and on keeping humour up on this journey 👍👍hope that helps darling 💕💕✨✨Shi xx

[Linda Corinne]

Yes I have some Octenisan to wash with 5 days prior to op. I think thats similar to what you suggested Shi. Were you told to sleep on your back as I have seen people use a V shaped pillow?

[Shi]

Linda that’s great you’ll be sorted sooner than I was 👍👍 ❤️❤️❤️ Pace yourself after op, no heavy lifting or anything, do your exercises but don’t push too hard you will be knitting back together, my surgeon got me to shower in hibiscrub for a few days before and after op, just another tip in case you were interested ❤️❤️❤️💕💕💕✨✨✨✨Shi xx

[Linda Corinne]

Shi - I spoke to my local hospital & they said to contact them 4-6 weeks after surgery (or when healed) to get a fitting & that I may get a softie when I have my op - I may ask them to try to make sure I get one. If not I have the knitted knocker stuffing I guess. Sorry to hear you did not have a fillet/prosthesis for so long. Thanks for your help re this anyway.

[Shi]

Hi Linda, it’s one they give you in a box that you wear in your bra, sorry I didn’t explain it properly, for ladies who have mastectomy they get a whole prosthesis and us who have a Tm or lumpectomy you get a partial prosthesis, I just call mine half a chicken fillet, sorry for any confusion, I just wanted you to get hold of yours as soon as, because I went 7 months of being lop sides before someone told me I was entitled to one and then didn’t want you to feel like that my darling which Is why I’ve told you about it ❤️❤️❤️ Hope that helps 💕💕💕✨✨✨Shi xx

[Linda Corinne]

Sue spoke to the hospital where having op and will prob call local hospital re a half fillet and see what they say altho how can they fit it if not had op? If i go back again before op for anything to other hospital then i could go and see them.

[Shi]

Tropical, you do what’s right for you darling and in your own time, you are 💪💪💪and will do what’s right for you. Linda my tm didn’t involve putting anything in as my surgeon reshaped what was left. I put the stuffing from the knitted knocker in both n&s pretty bra with pocket and my lovely £6 soft Sainsbury’s basic ones, not plugging anything but I’ve found these have been most comfortable ones for my personal use. 💕💕✨✨✨Shi xx

[Tropic_al]

Hi All,

Tanya, hope you're feeling better..shame about the nails. Mine are ok so far..lots of dark nail polish. Hoping they don't fall off on the last cycle. Strange that I'm just coming towards my good week and have a few nice things planned, but for the first time want the chemo to come quickly as it's the last! 

Thanks for all of the comments re genetic testing. I have a big family history of bc, but they considered me moderate  risk because most of the age of my mum and aunt in their 60s and wouldn't give me a mammogram when I asked over two years because of no funding here under 50.. Very frustrating.

I've now been offered the tests because of the history and my bc. I will have DNA taken and stored for now. Want to get the chemo and radiotherapy over with before getting the tests done as will be more possible surgery to think about it if came back positive. I will definitely do it though as it could also impact on other members of the family. 

Hope le everyone is ok

Tropic_al xx

[Linda Corinne]

Do you mean put stuffing in a bra with a pocket or just bras I use now? Do you think I should ask locally about a  half fillet as op is being done at another hospital. quite a long way from where I live? Ta Shi. I didn't realise you had had a TM and it will be nice to get it removed after 7 months nearly.

[tanya]

Hi ladies hope everyone is ok I'm day 6 of my last cycle and feeling very emotional don't really know why I'm kind of thinking it's the mixed emotions of chemo and finally knowing it's over its a bit of a strange one for me. I had my starting date for radiotherapy today which is 17 September so 15 sessions and finished. My last clinic is booked for 20 November where I shall be discharged hopefully all being well. My se are a bit strange this time too, over the last two days I have lost both little toe nails and my middle finger nail has completely lifted from the nail bed but I have a plaster on it holding on for grim death. Three other nails are also black now so guess I'll just have to wait and see. The good news is my hair is growing like mad and I look like some mad professor with fluffy flyaway white hair.. my hair was black before now pure white lol x sending love to you all . Tracey hope you are well not long to go now xxxx

[Jencat]

Hi ktk, yes my oncologist offered me the testing and wrote to Guy's hospital (where I went for testing) for them to consider me.

As far as I knew there were no other members of my family who'd had bc, but a few who'd died of cancer, but when they were elderly. The genetics department did wonder if there was a link between me and my paternal grandmother because I thought she'd died of stomach cancer, but they thought because it was fifty years ago, it could have actually been ovarian and not been diagnosed.

I also discovered that the testing isn't offered after 60 (I was 58 at the time of testing)-I niavely thought that was because there was no risk of there being a genetic link by then, but apparently that's not the case, it's just a cut off point! x

[Shi]

Hi Linda, I had my op before chemo and just wanted surgeon to get it out, I can have levelling up surgery when and if I want it, lots of ladies have it all in one go when and if surgeon offers, so that has to be your choice darling do what’s right for you. No I didn’t get my half fillet at time of op, it gets forgotten about because you still have a boob so please ask about it if you are not levelling up. The knitted knocker doesn’t work for a partial, ive pulled the stuffing out and padded the bra with what’s needed, it’s worked really well, so give it a try when you need to, you’ll be pleased at how well it works just using the stuffing 👍👍get your button front pyjamas and don’t forget lip balm and hand cream. You’ll be fine 💪💪💪after chemo it’s a doddle trust me 😘😘💕💕✨✨Shi xx