July RADS anyone???

[Snow Leopard]

Thanks Anita and not patronising at all. Great you are so close to the end. Last one tomorrow eh? Well done you! 

I nearly fell asleep during the session today. It's actually very relaxing lying there getting zapped by radioactive  waves...lol...

All the best for tomorrow. Hope you have a little celebration planned. Just something a bit special to mark the occasion. 

Pat xx 

[Anita]

Hi Pat yeah nearly halfway through. I'm not surprised you're tired with this & your MS. But you're doing the right thing by going to bed if you feel tired after (hope that doesn't sound patronising as you know what to do). A late one is hard, I've had a few. I feel really tired today it's my 19th of 20 & I've had 3 early ones in a row so I fell asleep for one & a half hours this afternoon so I can only imagine how you're feeling. But as the radiologist said to me this morning ' you won't feel like this forever' so I'm clinging on to that. Enjoy your weekend off after your late one tomorrow xx

[Snow Leopard]

Just completed session 7 and the fatigue has really kicked in now (but remember I have MS so might not be this bad for others). All I can do is come home and get into bed. 

On the positive side my breast, although pink, is not peeling or anything and only very slightly sore. My appointment tomorrow is for 7.30 pm! Not looking forward to that but halfway through tomorrow's session will be my halfway mark of 15 sessions. Yay! 

Hope everyone is doing ok.

Pat xx  

[Elizabeth.p]

Hi Anita and everyone else.   Thanks for the advice. All very helpful

Elizabeth x

[Snow Leopard]

Hi again Anita, I asked for late mornings. Last week they could only do mid afternoon but this week so far I've had late morning which is great. Don't have to rush but also not sitting around waiting all day to go. I get my next 5 days appointments tomorrow. 

Yes a wheelchair adds so much time and hassle to everything! Well I have a great carer coming with me. Vey organised and helpful. I was a friend of his mother's and she passed away about 2 years ago and we, her son and I, stayed in touch. His mother was in a wheelchair also so it's great he's an experienced pusher! 

It's only 8.20 but I'm going to get ready for bed! 

Take care, speak soon, 

Pat xx

[Anita]

Oh gosh Pat yes I can see why it's tiring. My husband's a wheelchair user & it does add extra difficulty to life without you having this as well. And of course where you live, too. I'm lucky that providing traffic isn't too bad it's only a 25 minute journey. Our unit is open from 7am to 8pm so you have to have your fair share of early & late times. Are you able to ask for specific times, I've had to on a couple of occasions due to other hospital appointments so it might be worth asking if it will make your life a bit easier. But before you know it, you'll be finished. Xx

[Snow Leopard]

Anita I think skin type must have something to do with it. I've always burnt easily in the sun. I'm sure it will go quickly. Already the first 5 have flown by. I think for me the the worst bit is the getting to hospital and getting home as it involves wheelchair, carer and taxis. Exhausting! Last week the 3 appointments were mid afternoon so was going home in rush hour traffic (London) but luckily this week they've all been around noon and it's much better. Gosh I'm glad I don't have evening appointments!

I'm so glad yours is nearly over. Of course I don't hate you for not burning!!! (She said through gritted teeth...)

All the best, 

Pat xx 

[Anita]

I know how you feel Pat & I know you won't believe me but now I'm down to my last 3 it feels like it's gone quickly so I hope it'll feel that way for you, too. I've been very lucky as it only started to get quite red around 14/15th day. Now I'm on my 2nd booster it's feeling a bit more sore especially around the scar area. I'm presuming skin types make a difference, I've never really suffered bad sunburn so maybe my skin can tolerate it a bit better. I know people, like you, who have suffered from quite early on. I bet you hate me now, don't you? I'm not sure if this makes a difference but I've found the earlier my appointment, the better. I've had a few appointments at 7.15 in the evening & I did suffer more then with hot, red boob but if I have an earlier appointment & put cream on as soon as I get home, I don't seem to have any problems. Wishing the weeks away for you xx

[Snow Leopard]

Don't mind you jumping in at all Anita. It's nice to have someone who's been at it a bit longer. 

How pink and sore is your breast? Mine already looks a bit sunburnt after only 4 sessions! Bit worrying but the nurse said it's normal. 

Glad you'll be finished soon. Wish I could just close my eyes and sleep until it's all over! 

Pat xx 

[Anita]

Hope you don't mind me jumping in, I was on the June thread but don't finish til Friday which is in July so I overlap! Re deodorant- I was told not to use one containing aluminium. One recommended is 'pitrok' which Boots sell but I got off Amazon. It was over £4 which is a tad on the expensive side but as it was a one off I bought it. I'm sure there are other similar ones out there. I was also advised to use Aqueous cream but others say E45 is just as good. I'm into my 4th week & haven't found driving myself a problem but obviously everyone is different & you may well feel tired. X

[Libb901]

Hi There,

i saw the Radiotherapy team yesterday and I have my planner appointment next Tuesday, with three weeks of treatment due to start at the end of July.

I am also very fair skinned and after recent surgery, my right breast - which is the affected one - is still pretty hypersensitive at the moment and sore to touch. Will this become worse with the radiotherapy?

Also, I've had others who've gone through radiotherapy, say that you get tired and was planning on driving to and from appointments. I'm 44 and are wondering how much this might actually affect me X

[Snow Leopard]

Hi Elizabeth and LollyDolly and welcome to July glow worms! 

I was told not to use deodorant...luckily I'm not a sweaty person......but each hospital seem to have their own rules.

I'm on Day 5 today so will be a third way through. 

My advice so far is don't stint on the cream...really slather it on. Also I was told to either not wear a bra or wear a very soft bra. I found a breastfeeding / sleeping bra on Amazon. Pull-on like a sports bra. Very soft. 95% cotton and 5% elastin. Let me know if you want the link (am I allowed to put links on here?).

All the best to you all. 

Pat xx 

[em32]

Hi Elizabeth. I'm using my normal deodorant a nivea roll on but they will advise you on what to use and not to use.

Welcome new glow worms xx
Em xx

[LollyDolly]

Hiya, can I join in plesse? I'm due to start my rads next Monday. Finished 6 rounds of TCH in June. Herceptin number 7 on Weds.
Hope everyone doing well.
Love the glow worm poem xx

[Elizabeth.p]

Hi All

i have my planning session on Thursday and will be starting on Monday 18th.  I'm very pale too so wonder whether I will burn.  The consultant told mr to use aloe Vera and aquaeous (sp??) cream. 

Are you all using your normal deodorant ?

elizabeth 😀

[Snow Leopard]

Hi Jen, saw an older more experienced nurse today and she said that yes the pink and soreness is being cause by the rads (Ha so I was right! )

I was all ready to use aloe vera but they told me to use E45. So got a huge bottle of that and slathering it on 3 times a day...once in morning, once as soon as I get home from rads, and once in evening. 

It was only my 4th one today but already feel like an old hand! 

Good luck with the planning Jen...it's easy. No pain involved! So glad your seroma has improved. Let us know how it goes on Friday.  

Hope everyone is doing ok. I come straight to bed when I get home from hospital. I have a hot meal in cafeteria there...only a fiver...so I don't have to bother to cook in evening!  (Luckily my only housemate is my three-legged cat Dickie )

Pat xx

[JenJen]

Hello Glow worms 🙂 I hope everyone is having a sunshiney bum day 😉

Pat sorry to hear the MS is being a b*gger rest up and make sure you chill as much as possible. I can believe about skin I think mine will go pink v quickly im sort of casper the friendly ghost colour so I expect to burn 😞 I have litres and litres of aloe vera gel and aveeno on standby

I have planning date through yay!! Its on Friday, seroma appears to have chilled out so hopefully itll go ahead 🙂 had my 9th herceptin on Monday last week still snotty from it 😞 usually its gone away by now but 9th means half way through yay!

xx
Jen

[Mmey]

I'm starting rads at St Thomas' in mid July for 23 sessions.  I've had my planning CT.  I'm not looking forward to commuting into London every day but I guess it will be preparation for when I go back to uni in September.

[Snow Leopard]

Hi fellow glow worms, 3rd one over with yesterday. So glad I can rest for the weekend. I'm so tired but I think that's more my MS playing up than the rads. My breast is starting to feel a bit sore. I noticed after only first treatment that my breast was pink and mentioned it at rads, and they said that it was too early for that...but I know my breast and believe me it is pink!

Very nice yesterday in waiting room was a woman I was in hospital with after surgery. Felt like bumping into an old friend although we'd only known each other for a couple of day!

Hope you are all doing ok. 

Have a good weekend, 

Pat xx 

[em32]

Hi sarah. Apart from the hour and half delay all went well. First one over and done with and 4th injection ticked off not sure when I start tamoxifen though!
Em x

[SLou296]

Hi Em, I had my surgery just before christmas and finished chemo 5 weeks ago.  I'm on Herceptin too and have already had 4/18 . I started my tamoxifen tablets on monday - haven't turned into a big green angry monster yet so all good so far x

Hope it all went ok today x

Sarah 

[SLou296]

Hi Jay

I'm room 1 at 1pm on 19th July - not sure of times after that but have requested an afternoon slot.

Hi to all those I haven't yet spoken to and Good luck all x

[em32]

Thanks for the welcome ladies xx

[JayG]

Hi Sarah:) I'm in room 1 at 4.30pm from July 14th. My first has to be earlier because of my insistence on using my existing freckle! I work in Cambridge a couple of days a week so wanted as late an appt as possible to allow me to continue working and feeling normal - as normal as I can anyway! Glad the first day went well for you Pat - long may it continue:) Welcome Em and all good wishes for you going forward. X

[Snow Leopard]

Hi Em, and welcome to the July glow worms! You have clearly been through the wringer and more to come...stay strong Em and if you can't stay strong don't worry. Get by however you can. Remember you have friends on here to support you. 

I had 2nd rads today. It's an odd experience really as you don't feel anything. You just lie there with your arms above head and keep very still. It's quite quick as well...about 15 minutes. All the staff I've dealt with so far are lovely and the other patients too. 

Wish you well tomorrow and so glad you found us!

All the best, 

Pat xx 

[em32]

Hello ladies. Just found this thread. So thought I'd jump in too. I start my rads tomorrow. Had my planning and tattoos last week. I've got 20 sessions of rads finished chemo three weeks ago had my wle in Feb. After rads I have herceptin injections and tamoxifen tablets!
I'm 33 and found a lump just before Xmas by accident fast forward 6 months and here I am.
Em x

[SLou296]

It does seem like during rads that it is going to be a bit 'Groundhog Day'ish.

[Snow Leopard]

First rads yesterday went well. Everyone was extremely nice. Can't quite believe I have to do it all again today...and tomorrow...and Monday...and....

Hope all are doing ok,

Pat xx

[Snow Leopard]

Hi Jay, I too have been lucky and also caught on routine mammagram. Great that you got your own way with tattoos. Well done. 

All the very best and see you on here again soon, 

Pat xx 

[SLou296]

Hi Jay,  I'm having mine at the QE in Birmingham too. Not sure when mine will start but I have the same 3 weeks with 5 boosters, we may bump into one another 🙂 

[JayG]

Hi, new to the forum but have dipped in with interest since my WLE on May 9th. I'm apparently one of the lucky ones: picked up at routine screening, 8mm grade 1 tubular, removed with clear margins and no lymph node involvement on SNB. I had my planning CT this afternoon and successfully argued for a slightly off midline freckle to be used rather than a tattoo so got away with just two, one on each side of my chest. It's a small success but meaningful to me. I start rads 13/7 for 3 weeks with a further 5 booster doses over a week. I was given Cavilon spray to use (University Hospital, Birmingham) and I'm hoping it will stop my skin reacting too badly. I've been incredibly lucky and truly appreciate that the NHS is doing everything it can for me. I'm sending very warm wishes to everyone else starting their radiotherapy in July - let's hope we ALL have a very uneventful treatment with nothing much to report:) 

---

@Snow Leopard wrote:

Hi ladies, I start Rads on June 29th for 3 weeks. Finish on July 19th. Had lumpectomy on May 20th, clear margins and nodes. Was stage 1. Feel extremely lucky! Having it at Royal Free, London.

Anyone else due to turn into a glow worm in July? 

Wishing all well. Together we are stronger. 

Pat xx 

---

[Snow Leopard]

Welcome to the gang Sarah! Rather a shame they don't tattoo little butterflies or something!

I start mine tomorrow at 3.30 pm. Hoping I get an earlier appointment for the rest of them (15 sessions) so I don't sit around all day waiting to go! Unfortunately mine entails a wheelchair, taxi and carer so it's going to be a bit of an epic 3 weeks...but if it stops the cancer coming back it's worth it!

Hoping to save on my electric bill by becoming my own reading lamp...lol...

Pat xx 

[SLou296]

Just had my planning appointment through, I become a tattooed lady on 1st July.  Don't have an actual start date yet but I'm sure it won't be long after.

Good luck everyone, getting closer to the end now 🙂

Sarah x

[Snow Leopard]

I love the poem Jen!!! I hereby declare it the official poem of the July Rads Group!

Glad you can go to local hospital. Anything to make it easier!

Pat xx 

[JenJen]

I didnt get a start date or even a planning date today but I did find out im having 15 and meet the oncologist 🙂 and despite originally being told by someone I would have to go to Christie due to lymph node involvement I was told I can have my treatment at my local hospital which is one of the 2 outreach radiotherapy centres they opened so I am very happy as its reduced 4hrs on public transport a day to 1.5hrs and increased the chances of getting lifts to or from the hospital 🙂

Hope everyone is OK

Pat calling us glow worms made me think of this poem I read somewhere

Oh I wish I was a glow worm,
for a glow worm's never glum,
'cause how can you be grumpy,
when the sun shines out your bum!

Jen x

[Snow Leopard]

Hi Debbie, Jen and Elizabeth, you all sound like you've had a rough time. I hope that Rads will take you closer to the day when you can celebrate end of treatment and cancer free!

We will all be glow worms together & can share the good and the not-so-good and the plain-old-bloody-awful on here. 

Stay strong (and if you can't stay strong come on here and tell us...I have MS & believe me I've learnt that a simple post about your fears or sadness can make the world of difference).

Pat xx

[MummyBreenster]

Hi all,
I just got my dates today. I have planning on 29th June and start rads on 9th- 28th July.
I was diagnosed Dec 2015 with approx 7cm lump, her2+, I started chemo in January had fec-t then mastectomy 19th May. I just want to get started with rads now! Having it at Freeman Hospital, Newcastle.
JenJen sounds like you've had a tough time with your seroma, I bet you are looking forward to getting treatment over with.
Looking forward to helping each other through our next stage of treatment.
Debbie x

[JenJen]

Hiya 🙂

I thought id be a June girl but delays mean im going to be a July girl as im not seeing the oncologist till Friday this week then by the time I have planning etc

Im Jen I was diagnosed last October with a 7.5-8cm lump with lymph node involvement im also her2+

I started neoadjuvant chemo on Nov 9th had 7 cycles of EC and Paclitaxel finished on March 29th then had a full MX and ANC mid May and now waiting for rads with a seroma that wont stop. Have had it drained 4 or 5 times now and added up yesterday have had 2ltrs drained from it in the 6 weeks from my op.
Been told it wont delays rads now so I expect to start soon 🙂 I am under Christie in Manchester


Jen x

[Elizabeth.p]

Hi. I am starting mid July. Will be having 20 sessions.  Just finished chemo so I am on the break between chemo and rads.  I've been reading about how others are getting on and I am hoping it's going to be a breeze.   Sounds as though you have been lucky (if you can call any BC diagnosis lucky) with your lumpectomy.

elizabeth 😀

[Snow Leopard]

Hi ladies, I start Rads on June 29th for 3 weeks. Finish on July 19th. Had lumpectomy on May 20th, clear margins and nodes. Was stage 1. Feel extremely lucky! Having it at Royal Free, London.

Anyone else due to turn into a glow worm in July? 

Wishing all well. Together we are stronger. 

Pat xx