Chemo JAN 2017

Public Archive
1121

Hi all,

Robin, fancy you hearing the same concert! It was an early finish so not too bad in the noise front I hope. I walked a lot that day too and yesterday I was completely shattered. All the way through chemo I got away without fatigue until this last round and now I can see what you were all talking about, I am in a daze and really clumsy and forgetful, I think it may just be because I am anaemic now. My hair is still growing, very fluffy and soft, I am hoping it will speed up as I get further away from the last chemo.

 

Egg - I will be interested yo see how you get in with eyelashes, it took me about an hour first time. I found some tutorials online and apparently you are supposed to use your own lashes as support for them (after applying mascara) but I also found some You Tube tutorials if you don’t have any lashes but I haven’t watched them yet. I have also been recommended to try RapidLash or Revitalash which both stimulate growth apparently. Re eyebrows, I am not good at getting them at the same level. I am looking forward to new nose hairs Blue! On the plus side, my legs are silky smooth at the moment.

 

Suze - thanks for the information on the arm and fingers. Like Egg, I gave up on the hirudoid cream as the cording feeling went away but I do still have a groove. That was from my first session too and we had to avoid that vein after that but I did finally make it through without a PICC or port. As it hasn’t been uncomfortable I pretty much forgot about it but I will try the massage idea.

 

sorry a ramble of topics today!

beedot x

1122

Hi everyone. I can identify with everything that’s been said. My hair is a few millimetres but literally so fine and pale you can hardly see it and I still look bald!
My arm is still tight and sore and burnt looking on the skin. I must do some of these cording exercises.
Lashes and brows - not a chance.
Part of the top bit of one thumb nail has come off and the other feels like it’s heading the same way.
On the plus side energy levels are much better and can do lots now without getting breathless.
All this nearly seven weeks after last chemo.
Wtp how did Race for Life go? Well done for doing it.
Beedot don’t worry - the concert noise was great and didn’t bother us at all. Just good to know these events are still going on, with all the awful things happening right now.
Take care all and one day we will be side effect free, just imagine. R x

1123

Thanks everyone for info on the vein cording. You are so lucky Suze to have access to a physio - thanks for sharing their advice. When I asked my team about how to deal with it, they just gave me more hirudoid cream! No advice or information whatsoever! It makes sense to me about rubbing the vein until it feels a bit sore, as mine improves a little after I’ve massaged/rubbed the hirudoid into my arm. I have been getting concerned as it’s been over 2 months since I had my 1st EC which caused the damage and I was thinking it should be getting better by now! Obviously not, as you all have been suffering longer than me!
I’m after more advice/information please…! For those who have already had a lumpectomy and lymph node clearance, have you any recommendations for bras post op? I’ve read about buying front fastening PJs for hospital and luckily sainsburys have some nice ones in at the moment, but i don’t know what to do about bras. Do I need front fastening, a soft sleep type bra or a sports type bra? I’m thinking about my restricted movement, location of drain, and wounds rubbing on seams etc.
And Ebim, where are you? Are you OK? And Scotty and slowski - how are you doing?
X

1124

Thanks Beedot, Esther and DJD - there’s some really good advice there! I do wonder how I would’ve got through this experience without you all to help! My team and BCN are lovely and always help when I approach them and ask but nothing is ever really offered and I feel like I’m being a burden with my questions or gripes.
I love the idea of the nightdress with press studs - it opens up so many more clothing options! I’m having so many hot flushes, and hospitals are so warm, I’m thinking I might adapt some vest tops to wear instead of PJ tops. My surgeon did say I will have a drain so am currently making myself a drain bag from a curtain remnant! Think Julie Andrews in the sound of music!!!
I bought some sainsburys crop tops after my biopsy in December and wore them for months as my ‘wounds’ and lumps fall under the bra seam under the arm and also the top of the bra cup and I found my regular bras uncomfortable. I didn’t think I’d be able to get the crop tops on and off over my head post op though? I am expecting not to be able to use my arm very well for a few weeks post op - is that not so?
I’m off to sainsburys tonight (ooooh, the highlight of my week - don’t get out much at the moment!!) but might go to asda too and check out their bra range.
Esther, have you any other radiotherapy side effects apart from those affecting your skin? Any fatigue at all?
I started a diet yesterday!!! I have been told that the dreaded tamoxifen won’t start for me until after radiotherapy is complete so I’m trying to get as much of my chemo/steroid/overindulging weight off as I can before then! I’ve got about 10 weeks! We went away for a few days last week and looking at the photographs of me with the kids was a bit upsetting. I definitely have a marshmallow face from the weight gain and the steroids, and I also have a huge girth! But I’m there, enjoying the holiday and enjoying my family, which is the main thing.
X

1125

Hi Blue. Just remembered I was given a small heart shaped pillow by my bcn to tuck under my armpit to give it a bit of support, very useful.
Don’t try putting your crop top on over your head - you’ll get stuck from experience - step into them, much easier. It not very dignified! ?
I am suffering from some fatigue with the radiotherapy. I’ve still got a lot of muscle aches from the chemo and the fatigue will suddenly hit you. Drink plenty of water is the advice
I know what you mean about weight, I feel a fat old frump at the moment! I hope you’re diet goes well.
Enjoy your holiday. X

1126

Oh yes, I got one of those cushions from the BCN too, I loved it! Used it in the car and in bed, for protection as well as support, it was really useful, I walked round clutching it like a teddy.

1127

Hiya Everyone!

 

Sorry its been a while but what with half term and daily hospital visits for rads time keeps disappearing.

 

Been good to catch up on the thread. I am now 5 weeks post my final chemo and have had 11 out of 15 rad sessions. i definately feel like me energy levels are starting to return and my body is picking itself up and starting to recover. My hair is starting to grow back, i have about 1 cm of fluffy hair all over though unfortuntley there seems to be a lot of grey mixed in with the brown?! i still have very few eyelashes and my eyebrows are extremey patchy so have been filling them in. (Not sure i would be any good at false eyelashes!) and no sign of any nose hair!

 

I have found the rads sessions okay and havent really suffrered with any fatigue. It is just time consuming and takes about 45 mins (plus extra time to find a parking space!). My skin on my chest is starting to look a bit red and is a little itchy so i am slapping on the E45. The main thing i have noticed is the cording in my arm so my BCN gave me BCC’s  post surgery exercise sheet and i have been doing them, which is helping a little.

 

Robin how are you getting on with your rads?

 

Blue - i also had a masectomy and full lymph node clearance. i purchased button up PJ’s which you definatley need as you can’t raise your arm above your head. i also had a drain for a few days which was fine. i bought an M and S post surgery bra but the inside seam irritated my scar so i wouldnt recommend them. i then switched to sainsburys crop tops whch i put on by stepping into them! Start doing the exercises as soon as you are able and it will definately help with your mobility in your arm and shoulder. 

 

Wtp - well done for doing race for life, that is a fantastic acheivement. i am keen to start running again but am worried about pushing myself too soon (I have been doing lots of walking) and am tempted to do a 3km charity run at the end of June, though it will be more of a very slow jog, but it would be a start.

 

Egg- i hope your cold is receding and the antibiotics are kicking in.

 

love and hugs to everyone

 

nicky x

1128

Well done Wtp! I’d be pleased with 33 minutes at my very best. Lovely photo of you and your little girl and I am so jealous of your hair. I am sorry to hear about your husband, I hope he recovers quickly, you have certainly both been through a lot recently. Thanks for sharing this with us, we all need inspiration to get back on with life I think.

hugs Beedot x 

1129

Well done WTP. And wow on the hair front! So much!
What a fright you must have had with your husband. I hope he is recovering?
Have just had bloods done at hospital and good to go for tomorrow - 3 more after this!
Hugs to all,
Egg x

1130

Well done Wtp! I feel really proud of you for completing the race in such a good time, so soon after 6 months of treatment! Your hair is gorgeous too! So thick. It’s funny, but looking at your photos and how well/‘normal’/young you look made it hit home that it’s not just me in this situation - the diagnosis, treatment and the worry about the future mixed with the unfairness of going through it all at a young (ish for me!) age. With the exception of one other lady my age, everyone else I’ve seen in clinic and during chemo have been much much older than me and perhaps without realising, that has made me feel that bit more sorry for myself!
Thank you everybody for the surgery tips. I ended up buying more crop tops rather than bras for post op, and practiced putting them on stepping in to them and only using one hand!!! It can be done, unless I’m in the middle of a hot flush!
Good luck tomorrow Suze. How do you feel about finishing?
X

1131

Hiya

Suze my last rads is Monday so just a few days behind you. I have a couple more appointments with consultants at the end of June/beginning of July regarding my ongoing hormone treatment as I am er + and pr + but Monday is a big milestone for me… Don’t know how I will feel walking out of the hospital wards for hopefully the last time.

Wtp- well done on your run. A great time and you look fantastic. It has definitely made me decide to sign up for my 3km rainbow run with my kids at the end of June. You have so much hair!! Am very jealous! I hope your husband is okay and makes a speedy recovery.

Blue - I totally understand what you are saying about the age issue. I always feel youngish when I am in the hospital and am constantly looking out for people who look my age, almost as reassurance that it is not just me.

Egg - good luck for tomorrow. You are nearly there

Nicky x

1132

Wtp well done on finishing the race with such a good time. I hope your husband is ok now. Your hair looks amazing!
I’m quite worried about my hair as not only is it hardly growing back but I am still losing it! To clarify, I had some stubborn hairs that just hung on forever - even they have fallen out recently!
I seem to have developed a new side effect - mouth has a salty taste all the time. Anyone else had this?
Blue, I think you and the other young ones have every right to feel sorry for yourselves. It is extra blooming unfair when you are young.
Nicky and Suze, I finish rads next Tuesday so I will be joining you across that finishing line. Another milestone. Rads has been ok for me so far - only side effects a bit of redness and itching. I love the staff there - they’re so kind and good at their jobs and young. I wonder how we will all feel when we finish?
Hope all you teddies are having a good week and side effects are in retreat. R x

1133

Evening everyone - wanted to just say hi to all. I have been catching up with thread every few days but seem to have no time to post. 

Suze -  massive hugs for tomorrow, you are there!

Nicky I am sure you are looking forward to Monday too, but equally understand the slight apprehension of how it may feel. My radio is going smoothly so far and i would say your experience has also been similar to mine - i have needed to re start the exercises and I apply the e45 lotion straight after the treatment as I forget later in the day! I am due to complete 19th June ( having some boost sessions)

- my hormone therapy keeps changing. I have already started monthly Zoladex injections and am now in the menopause ( no blood test to confirm) and the plan was to start Letrozole, but they are discussing if it should be exemastane instead. Not sure what will sway them to one or the other as they are both in the same group of drugs. I am waiting on a call from my BCN.

wtp - your hair - wow! sooooo jealous! No regrowth like that for me yet. Still wearing scarfs - only managed the wig once, think it will stay in the box now, unless my regrowth is really really slow! Congrats on the race - thats an amazing time, you should feel so proud on top of everything that has been happening. Hope hubby recovering well.

Blue- i also find myself scanning the rooms for people my age and am often met with sympathetic looks, rarely do I see anyone who i think i can relate to age wise. Interestingly I think i am finding i am more bitter about being shunted into older age prematurely than undergoing chemo/radio - dont get me wrong as we all know chemo was hard, but the aches pains, weight gain ( nearly 1 stone in about 4 weeks - no kidding!) and flushes are also so visible to the ongoing journey ahead. keep us updated re your surgery.

egg - hope the cold/chest infection has gone, I am hoping the brows and lashes make an appearance soon as i would be hopeless at applying anything false or drawing in!

Jackie/Slowski/Beedot/Robin/mooney/ebim/ sorry not to reply individually but i have been keeping up and love hearing how everyone is doing. much love to you all.

Also hi and hugs to those or are also reading but unable to post for what ever reason, hope all well with you warriors too.

xx

 

 

 

 

 

 

1134

For Suze123

 

I am SO proud to be able to award this certificate to you - the first of the class of January 2017 to finish both chemo and radiotherapy.

 

Well done - we will be with you soon.

 

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1135

A quick catch up with everyone.

 

Blue2 - I’ve spent loads on bras and still haven’t found one I’m happy with. My op was a modified radical mastectomy, so I still have all of my pectoral muscles. I say I have 1 1/2 boobs.

I am not having reconstruction, so this is it for me. Good luck on your search for bras.

 

wtp2016 - WOW! Race for life AND hair. Well done _ I’m so jealous about the hair. Mine is growing quickly but is still all fluff, but as it’s now 30C+ every day here, hats and/or wigs are not an option, so I just go as I am.

I am SO sorry to hear about your hubby. I think we all forget what a tremendous strain this all is on them - I know my hubby at 66 is reeally finding it hard both physically and mentally - but of course he still says he’s OK. I pray yours will get better as you progress.

 

EggG - hope all went well for you yesterday. You will soon get your certificate and badge.

 

All of you youngsters - I really do feel for you. I`ve said before that at 65 I’ve been so blessed to have dodged the C bullet for so long. You, on the other hand don’t deserve this at such a young age.

 

Me?

I’m fine. BOB is behaving and although I still have to go for dressing changes, it’s now every other day.

I started my rads on Tuesday, and so far so good, although like others I am finding it difficult to keep my arm stretched for the duration, and I have been doing the exercises at least daily.

The bad news for me is that my rads are given at a hospital 140kms from home, and my appointment is a 9PM.

It’s between a 3 and 4 hour round trip, so what with the early morning dressing changes, I am tired.

However - on the plus side, the motorway is quiet at that time of night, and there is plenty of parking at the hospital.  Always look for the bright side.

I have 25 sessions programmed - so my finish date will be 10th July.

 

There are a few members we haven’t heard from for a while, Ebim, Slowski, and Scotty. Are you all OK.

 

 

 

 

1136

Good to hear from you Jackie. That’s quite a round trip you have for rads. Wow you’re doing rads certificates as well - you’re very good to us! Your certificates give everyone a huge boost.
Suze well done on being first to complete rads and get your certificate to prove it. We need to step the chemo party up a gear to celebrate rads finishers as well. Plenty of room still for latecomers and remember we’re all here for you, whenever you finish.
Right I’m off to vote, then to hospital for rads number 12. The machine broke down yesterday for first time so it took longer but otherwise all good. R x

1137

Morning all…

 

WTP well done on the race for life, such an achievement.  I do hope your husband is on the mend, it must have been so scary for you and him. I’m very jealous of your hair, it looks stunning! Mine is growing slowly and still more fluff than hair and more round the sides than on top - at this rate I shall look like coco the clown! ?

 

Suze congratulations on on completing your rads!!! ?? and a rad grad cert from Jackie that’s lovely.

 

i was just getting ready to leave for 14/20 when I had a call to say they have computer problems so hold off coming until they ring me.  I really hope I get to go today as I’m really wanting next Friday to be my last.

 

take care all. Xx

 

1138

Hi all,

Many congratz to those finishing and warmest wishes to those continuing. Am almost half way through rads and despite a longish journey it has all been very smooth so far and staff brilliant.

However, am feeling that having Herceptin for 9 more months every 3 weeks is diminishing that feeling of the end being in sight. I felt really down after waiting for 2 1/4 hours for a 5 minute jab earlier this week - having felt very positive , the experience pushed me into all sorts of dark thoughts. This really is a roller coaster isn’t it?

Anyway hugs to all, this group is very supportive.

Slowski xx

1139

Slowski - like you I will continue on herceptin for a year so even though I’m coming to the end of chemo i keep thinking it won’t be the end - and I’ve still got surgery and rads to go! Also have to ask onc again about whether I should be on Zometa for bones once active chemo finishes. The chemo nurses are very quick to point out that herceptin isn’t chemo but to me it still feels like it is! Is that a bit daft?
I can’t remember which other Teddies are also continuing on Herceptin. I remember Ali was but she hasn’t posted on her for a long time so hopefully all is well.
Hope you all have a good weekend,
Egg x

1140

Suze - can you tell me more about the Younger women moving forward course? I haven’t seen that in my area. Maybe by the time I finish they might have it!
I’d be interested to hear what they talk about.
Egg x