July 2016 starters

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Hi Taran, thanks for the welcome and glad you’re feeling well today : ) Sorry that food is not tasting good for you though, that must be very boring.
Surgery for me went very smoothly, I was bouncing around the ward the next morning trying to convince them to let me go home! Have recently had some cording issues though and hypersensitivity that feels like raw sunburn being rubbed with sandpaper : (( but I saw the physio today who was amazing and reassured me that we would get it all sorted. Have spent the afternoon stroking and tapping my ‘non’ boob, if anyone saw me it would definitely look a bit dodgy!
Bookworm, hello, I’m so glad your first session went well and the initial fear is over. I shall be reading your positive post just before I have my first session : )

Px

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Hi Pookie and welcome, I hope your arm is feeling better. I had full anc and suffered cording and the hypersensitivity but it has improved a lot though I am 8 weeks post surgery. Bookworm massive congratulations I know you were really worried about it. I’m very much an ignorance is bliss person so wasn’t overly worried. However now I know what happens I will be a little more apprehensive next time. Taran glad to see your feeling better, the taste does improve but I’m not back to  before. Hazel I hope the se’s haven’t kicked in too bad today. Alex everything ok?? Did you or didn’t you?? Well I’ve just had my last injection and first reaction…it’s a sort of back ache/muscle spasm. Ok when I stand up but uncomfortable when I sit or lie. Just taken some painkillers to kick in and then hopefully it’ll ease. It’s not bad bad just a little ouch. It’s probably because I did a little shopping after my check up this morning. I’m not one to shop but it was a nice treat…this is my penance for buying a new dress ?. Nellie hope your ok today as well. xx

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Well done Bookworm!! So pleased it has been a positive first experience for you. The next one will be completely different for you now you know what to expect. Fab!!

Pookie, the hypersensitivity is awful isn’t it!! My bcn said the only way to get rid of it was to touch it. She recommended rubbing epaderm cream into it vigorously for 5 minute spells every day. I started doing that even though it felt so painful at first. And I got some emu oil after reading about it on the forum and started using that before bed. Between it all I found a massive difference really quickly, so would really recommend giving it a go if you have a lot of hypersensitivity. I think the epaderm is good for massaging the cording too. xx

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Ooh, thanks for the tips Taran, I’ll get some epaderm cream and emu oil…I’ll try anything! Glad it worked for you. 

Hi Bella, happy to hear your cording and hypersensitivity went relatively quickly and how great that you’ve had your last injection…hope your back allows a gentle celebration (in your new dress : ))

Does anyone here have experience of a PICC line? I’m definitely going to have one put in, on the recommendation of the onc, for two reasons. 1 my veins are not brilliant and 2 I have opted for weekly doses of taxol (after the FEC) rather than three weekly taxotere which doubles the number of infusions (is that the right word? Sounds like tea!) I have to have from 6 to 12. I’m just a bit concerned that it will be really awkward keeping it in place with two kids off on Sumner hols and all the additional work that that will entail! 

Thanks all xx

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Pookie1, welcome to the forum although I’m sorry you find yourself here. You will receive excellent advice and support from the wonderful people on here. I find this site invaluable.

 

Bookworm, Well Done! Believe me I was every bit as nervous as you and also had lorazepam in addition to the diazepam I already take for my anxiety/depression. Glad we’ve both got our first one out of the way, one down! Hope you get a good sleep tonight and minimal side effects.

 

Bella, I feel ok today, still tired but I had my first herceptin injection yesterday and my first Taxotere. I’m having four TC’s starting with hepceptin also so I’m expecting my SE’s to kick in properly in a few days going by what others have said re:T and Herceptin. Thanks for asking. Hope you are keeping well.

 

I’ve not get the boosting injections unless I need them, hopefully I won’t as joint pain is a fairly common side effect with Tax and Herceptin.

 

I wasn’t offered a picc line either but only have one good arm due to having 3 lymph nodes and lumpectomy in right arm. Ironically my right arm has really juicy vains but, alas, cannot be used. I’ll just have to see how it goes and even if I need a picc line for two or even one chemo cycle, I would rather that than have my veins damaged.

 

Taran, I’m on a reduced steriod dose. 4x2mg + 4x2mg dexamethasone for 3 days, then 3x2mg + 2x2mg then 2mg+ 2mg, so a reducing dose for a total of 6 days to try and avoid steriod comedown due to existing depression.

 

Alex???

 

Sue, getting a bit concerned about you, not like you not to post, hope everything is OK with you?

 

Best Wishes everyone.

 

Hazel.x

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Just a quick post. Didn’t get chemo today. Bit disappointed, but didn’t really feel I was ready and sort of knew it wasn’t going to go ahead, as wound still weeping and red and still on ABs. I am annoyed that they have postponed for 2 weeks though, I’d have been happier with a week at the most. Was up at hospital for about 3 hours. Saw Oncologhy Nurse, then Dr then had to go to Breast Clinic. Say Nurse who then asked Dr to see me. Dr there said I had seroma that needed drained. Then round to Physio. Mobility in arm really getting much better. Maybe a combination of getting rid of that fluid and Physio. Physio so painful, but so worth it. I am certainly getting my value from the NHS at the moment! Haven’t even had a chance to read all your posts girls, just a quick glance, but will do so tomorrow, so I don’t feel totally left behind lol. Take care everyone and sleep well x

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Hello Everyone

 

Having dipped into the thread last week as my first chemo looms on Friday I thought I should pop back. It is good to read your positivity and learn that you are not finding SE too great. 

 

Personally from a low point last week I have perked up. My recovery from MX and ANC has gone well and I have been feeling like myself this last week, feeling fit and healthy again. Although mentally prepared and ready to start with phase 2, I am really dreading feeling off/ill, in particular dreading headaches and fatigue. And any worse sleep than I already have. 

 

Positively I am now sporting a prosthetic boob, which has made me very happy, not least because it looks and moves so naturally and  is so easy to wear that I can see a life without having to have a reconstruction. I am also pleased I have faced the inevitable and have a small selection of headwear ready plus a rather fetching wig set aside for me. 

 

Shopping, cleaning and sorting will keep me busy till Friday. Hope you all have a good night.

 

Pat

 

 

 

 

 

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(((Hugs))) everyone! 

I’ve been glancing through - really do wish I could just ‘like’ etc instead of having to comment! 

I’ve given out a few hugs. ?

Well, 12 days of FEC #1 - and I must say this week I just feel ‘normal’ and friends and family say I’m looking good. Had another hair trim today, from a trusty friend .

Ive had a strange sensation around my head - like it’s being hugged and I’ve started looking for hairs on the pillow - 3 so far! ?

Good luck those ready to start - and hope the SEs ease for those already on that conveyor … 

 

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Hi all,

yes, I am still here, lol,

Welcome to all of the new ladies to this thread, such as Pookie1.

Hazel, thank you for your thoughts - I am just so glad to read that your treatment team made it easier for you to deal with all of this and gave you the appropriate attention. 

Great to hear that most of you seem to cope reasonably well with all of the various side effects, which can hit us.

Side effects are so very individual! Following my own pattern (now just post 3rd FEC) my experience is that the first cycle is a ‘fact finding’ mission - i.e. what side effects do we get and how can meds be adjusted to avoid them in the following cycles. It does seem to hold true, that as long as you are on the same treatment, no new side effects should appear. Some may become cumulative, such as fatigue and immune system.

Generally when going through my cycle - Treatment day and 2/3 days post treatment seem fine - then day 4 to 6  a bit challenging, as immune system really does go down hill and fatigue sets in - improving as of day 6 onwards right up to next treatment. It is likely to be individual for each of us, as to which day it is - but may give you a rough idea what to expect.

I have now experienced the truly accumulative effect of fatigue after my 3rd cycle of FEC. It might be different for each of you, especially as some of you are on different types of treatments.

It may really pay off, when approaching the half way stage of treatment -  to spend the days before 3rd cycle preparing food and get all necessary tasks out of the way, so you can simply just veg out, once the steroids wear off after treatment. 

Feeling tired is one thing, but cumulating fatigue really is more of a challenge, than I anticipated. there is no way of describing it, especially for someone, like me, who always finds a way to manage things and is very independant. It literally pole axed me yesterday, my legs were no longer mine, my brain could think - but in a very strange way, my mouth had real problems formulating words or expressing anything, which made any logical sense. Total wipe out - total helplessness - total frustration. And the electricity went in most of the house - no phone, no internet, no mobile network, no TV - bliss really, but not when hit with total fatigue, lol! I live in rented converted servants quarters in a large country house with no seperate electricity circuit - so these things do sometimes happen and I have no way of fixing things.

It felt very lonely and scary - but after a little sleep, my brain finally jumped back into action and remembered that I had a number of extension leads, which I could use on the few  ‘live’ sockets to re-establish outside communication.   

Today I am so much better - some of my energy is coming back - and now it is onwards and upwards again and so looking forward to getting back to work next week!

Huge hugs to all

Sue xxx

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Wow Sue - really awful to be cut off when feeling grim! The cumulative effect worries me so much. I am rubbish at feeling ill. Guess this will harden me up. You are amazing to still be working. I just said I would be off for six months and luckily my boss was able to get someone in to cover. Sometimes think the positivity of work would be great but the in/off aspect would have been hard for me and colleagues. So impressed that you are working. 

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Evening everyone,

 

Thanks again for the lovely welcomes. And thank you Bella Boo for the insight into the PICC line. How funny that you’re so unbothered by it that you almost forgot it was there : )) I was a bit aprehensive about it as I have never come accross it before…but, to be honest, I’ve never come across most of the things I’m having to deal with at the moment! I have a wig appointment on Monday, a pre chemotherapy assesment on Wednesday, consent meeting the following Monday, PICC insertion on Tuesday and then the main event on the Wed 20th. I’m thinking maybe I should just camp outside the hospital, oh, and the kids break up for the holidays tomorrow…

 

On a positive note I had an echocardiogram today to check that my heart will be ok for chemotherapy and the lovely man who did it for me was amazed by the neatness of my scar, he couldn’t believe it had only been 3 weeks since surgery.  It’s the first time anyone has ever complimented me on my chest area ; )) 

 

I hope everyone is keeping as well as possible.

 

Px

 

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Hi Nellie, nice to meet you : )
Glad your first round wasn’t as horrible as you feared. You’re right these threads have been an invaluable source of info and encouragement. It’s quite a lonely path initially and then you realise there are others and suddenly it seems more bearable and just a bit more ‘normal’.

I’ll be thinking of you too on the 20th. I hope your second round is as positive as your first.

P x

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Mad hatter, yes do post what happens tomorrow. I have now settled myself that chemo isn’t happening for 2 weeks. Have been very despondent about my wound, infection, seroma, pain etc Took myself away from forum, as sometimes I think it becomes all consuming. You just get fed up as feel you take 1 step forward and 2 back. It’s very hard not to get down about it. But whoever said this would be easy. I’m doing good today and going to do a wee bit of socialising ( only lunch or coffee, no alcohol involved lol) to cheer me up and get my spark back again. In between my checkups and exercises of course. Good luck for tomorrow. X

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Pookie, welcome to the Forum and the July thread. Sorry you find yourself here and I am sorry I am here too!I too have a PICC line in. Found the procedure totally painless. The white tubi grip they give you to cover however, does make me feel like a patient! Bellaboo if you find where you can get any nice ones, let me know. However, as I haven’t had chemo yet, can’t comment on its effectiveness there. When Nurse was changing the dressing on Monday, I needed bloods done, so she was able to insert needle into PICC instead of arm. Hardly know it is there. The odd time, I feel a wee niggle. And like Bellaboo I nearly forgot shower cover for it today. Only thing is, as my chemo is now delayed, I have it in a wee bit too early, but sure no one was to know that. And as for hospital appointments, I’m there that often, I was going to ask them for my own car park space lol x

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Wrote a long post but didn’t appear. Oh well…still up at 5am care if steroids though I took them really early so just a wee hello post chemo EC day 3. Yesterday much better than the day before. Still Headt and sicky feeling but no vomiting (thank you Emend ) just wired from the steroids snd a super pink face. Watched wall to wall tennis yesterday- thank you Federer and Murray and all in all no where near as bad (yet) as I feared. First night not pleasant, lots of gagging and slept poorly and port is still pulling like mad but not half as painful. A bit paranoid about going out. Nice chemo nurse said be very careful days 7-10 especially as I’m on a 2 week cycle and won’t have fun week 3 to enjoy:( I guess it’s a case of avoiding crowds but not being a complete hermit?! Injection for boosting White cells no problem. So for all new starters keep the faith. I was anxious as hell and would have done anything to avoid chemo. I was so hoping my endopredict result would save the day and get me out of this club I didn’t want to join but hey, at least I know that I’m chucking everything at it now! I’m sure I will bomb once steroids finish but for now, it could be worse and my pink face looks quite amusing to the kids!! ? Hope everyone is doing well. Love and hugs xxxx

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Bookworm, glad you have survived the first few days post chemo without too many horrible side effects that you couldn’t deal with. Sorry I didn’t join you on Tuesday for my first session. And at least the red face keeps the kids amused lol. Mine will be exactly the same when my time comes. Hopefully the next few days aren’t too hard on you. x

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Thanks Taran and Sue for such uplifting posts. Love love love the German quote Sue!!! Are you German? Taran, I really hope your arm settles. I had a horrible time too with my ANC but that was done when I had my first lumpectomy so back in late April. It is so much better now. You will get there but I know it’s tough. I worry about lymphedema. Will you be having radiotherapy after chemo? Mind you, that’s a way ahead isn’t it. I’m feeling ok today, the usual sicky, heady, day after party feeling!! I wish!! Take care all xxx

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So sorry should read Alex2016 and Sue!!! But hello Taran too! Xxxxx

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And Pookie, hello. Had exact same problem with weird sunburn numbed feeling under arm after ANC and fully endorse Taran’s tips. It does improve. Still numb but not so sore and no longer have those odd shooting pains as the nerves do their thing which used to make me jump! Xxx

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Hi everyone, good to see we are all getting by ok with the side effects so far. Bookworm, I had the pink face too! Looked like I’d been sat in the sun for hours on end despite the fact it had rained for 2 days!! Has settled since stopping the steroids though thank goodness.

Sue, I love that quote too. Words can be so powerful at times like this.

I really feel like I’m almost normal again. Except today I have developed very strange weak knees and an achy lower back. Seems a bit random but hopefully like everything else it won’t last too long!

Alex, I’m glad you’re feeling ok about the wait to start chemo now. You’ll be much better off starting it when you are infection free so will be worth the wait. I know it’s awful when you get a date in your mind though because you are all psyched up for it!!

Hope everyone is enjoying Wimbledon today! xx