July Zappers

[Sharnie]

Well done Riversidedawn, my first session went ok. Felt like I was in a sci fi movie while they got me in position with lasers etc! Only 22 more to go! I'm just so tired at the moment, not sleeping very well. Might need a trip to doctors for some sleeping tablets soon!

[riversidedawn]

That's it - I've finished! Skin OK, very itchy neck and a bit blotchy, boob and back are red..... Good luck everyone with your continued treatment.

[riversidedawn]

Hey guys sounds like you're having not too good a time if it. I have 5 permanent tattoos, each like a pinprick, really not noticable. Have my last rads tomorrow, may be 3 or 4 times they've inked the tattoos in with a marker pen. It depends on the radiologist. Honestly it's a doddle, except for 45-60 mins travelling each way. I'm lucky with a private hospital, but most others have been able to get a free car park pass so please ask about this. Looking forward to the last session tomorrow!!;

[Sharnie]

Hi all, my first session is tomorrow morning - hope it all goes to plan, sorry to hear about your problems Maria. My tattoos are pin prick sized so hope they find them all ok! I can see them so hopefully they will be ok. They just look like someone has put a black biro on your skin - maybe I will get them made into flowers or something lol! Will let you ladies know how I get on. Feeling tired today but after my long bike ride and no sleep I'm not surprised, been to work today too so an early night in order for me. I have to be at hospital for 8.12am so hope parking won't be an issue but my mum is taking me so she can drop me off if needs be! Good luck to you all for tomorrow xxx

[Blondie223]

Big tattoo sounds annoying Maria, sorry to hear that.

Tussie, thanks, think I will ask f I can be marked each day instead x

[Maria_B]

Hi everyone. Interesting first day of radiotherapy. Machine was being repaired so 40 minutes late starting. Then they couldn't find one of my tattoos so I had to go and be rescanned and have one more tattoo. I think they let a student do it because it bloody hurt! I've just got home from work (and the gym - I want my normal life back) and this tattoo is the size of a small pea, with a 5p size load of ink under the skin vs the two full stops which are my other tattoos. Bit hacked off about that.

Everyone was very nice and the treat itself was over in a flash (not literally) but it cost £6.60 to park as I had to extend it to 3 hours. Hope the rest is uneventful.

[Tussie]

Hi Blondie! The tattoos are just a pinprick and I am not too worried about them but I am sure we all rather not have them so ask if they can mark you up for every session. I would have done if I'd known about it. There will also be some sort of invisible fluorescent marking coming soon to replace the tattoos. xx

[Blondie223]

Hi Tussie, had my first onc appt today to discuss rads. Glad your first session went well. Can I ask how big/obvious the tattoos are?

[Tussie]

Hi all! Had my first session today and all went well. The only problem is the dreadful parking situation but I suppose you get used to come an hour earlier and wait for a free slot. Hope all of you starting today had a good experience. I just checked in to my chemo thread and found out that apparently you do not need to have the permanent tattoos,it is just that it is more convenient for the radiographers if we do have them. You can request they mark you up for every session saving you having a permanent reminder of your BC with the tattoos. Too late for me although I think that if you find the tattoos a very disturbing reminder you can have them removed on the NHS. xx

[Pinkbaglady]

Hope Sharnie and Maria and anyone else starting today got on ok with appts.
That's a hard decision to make re starting back at work Whitejasmin. I'm fortunate enough not to have to work now. I do sympathise with your daughter-in-law! Having one male on crutches was a nightmare, having 2 males in that situation must be terrible.
I think I overdid it yesterday! I've been whacked out all day today and fit for nothing! Hubby took me to my appt today fortunately. Hope I have more energy tomorrow.

[Whitejasmin]

Morning All, have had a lovely weekend with my friend staying over.  Went to Cardiff Saturday just bought a cardi, it was lovely just going out. Also went for a lovely walk and then finished off on Sunday by going to church followed by going out to lunch. Friend and hubbie went to pictures to see Ant-Man. They are both into comic hero films while I am not.

Both boys are recovering after their mishaps, although can't say the same for wife/mother who is threatening to leave, I told her to hide their crutches  and go out for  couple of hours.

I've never heard of Hunting the Sheep either.

Best wishes to all going through rads this week.

Am thinking of going back to work when my sick note runs out on August 2nd. My employer is willing for me to go back for a couple of hours a day. Feeling so well in myself that I want to but not to sure what to do with rads starting on the 29th July. XX

[Maria_B]

Thanks Sharnie. Have set my alarm for 6am to get to my first appointment at 8:40am tomorrow. So why am I still awake? Must be the excitement.

[Sharnie]

Good luck to all starting rads this week! Had a lovely bike ride today - 43 miles so pleased I managed it! The sheep hunting sounds similar to what we have here - but we have dragons this year! My children are grown up and not interested so might have to do the trail myself lol! Goodnight - got an early start at work tomorrow!

[riversidedawn]

Sounds great fun pinkbaglady. My boob and shoulder blade are definitely darker and my neck has gone all dark and speckled like big freckles crossed with sunburn. 2 to go!!!!

[Pinkbaglady]

Hunting the sheep was great fun! We found 12 of the 69! It's a great way of seeing parts of the city we wouldn't normally go to. Had a very nice lunch break, an ice cream by the harbour side and drink and a piece of cake in some gardens we never knew existed!! People are very good waiting in turn to take photos of the sheep and comparing notes about how many they've seen. It's lovely to see people enjoying finding them and taking photos of them with their children. Do feel rather tired now though!
A new week ahead - hope it's a good one for us all. xxx

[Tussie]

Pinkbaglady, had to Google Shaun the Sheep Hunt as I hade never heard abort it before, sounds fun, my niece would love it and so would I. Live a bit too far away though.. x

[Pinkbaglady]

Hope everyone is having a good weekend.
Hope you got something nice on your shopping trip Whitejasmin. Sorry to hear about your son's foot and your grandson too. My hubby broke his leg last year - he was a nightmare whilst in plaster! Glad you now have a starting date.
You'll get there Tussie. Not too much longer to go until the end. It's hard to see that though whilst going through the treatment, but the light at the end of the tunnel is getting closer.
Hoping to go Shaun the Sheep hunting in Bristol tomorrow. Fun to do, cheap and will get some exercise too!
My breast is looking a bit pink now, but not sore, so with just 2 more to go I'm hoping it won't get any worse. xxxx

[Whitejasmin]

Had a busy day yesterday.  Started off by visiting the invalids, then son and daughter-in-law came and sorted the garden (which had become a jungle). Looks lovely now.  Then my friend came over to spend the weekend with us, sent husband of to work today while we contemplate hitting the shops.  Hope you enjoy your bike-ride Sharnie. Have a great weekend all. X

[Sharnie]

Glad you have your start date - I only have 4 days to go before I start mine. Will soon be here now. Going for a long bike ride this weekend to try and shift a bit of excess weight! Everyone keeps telling me I look the same but I know my jeans are getting tighter! Goodnight all - hope you sleep well. I need a good nights sleep - been a bad week this week 😁

[Whitejasmin]

Hooray, had letter today rads start 29th July. Had a message of my oldest son yesterday evening he's in plaster up to his knee with a broken foot. Then this evening had another call off him, his son has torn the ligaments in his knee so they're both on crutches.

Riversidedawn not on antibiotics just have to keep it dry and covered, hopefully should be OK.  Think some of my weight gain may be down to a bit of over indulgence of chocolate.

Pinkbaglady Glad to hear your feeling so well (you can have my share of prawns I don't like the blooming things).  Enjoy your celebration

Tussie Hope your session goes well on Monday.

Think I'm in for a sleepless night, can't seem to settle.  Night All. X

[Tussie]

Hi Pinkbaglady! Lovely to read your positive post. You are at the stage in your treatment I am so looking forward to find myself in, to be more precise end of August. Starting first radiotherapy session on Monday, I just want to get on with it now.I am four weeks post chemo and is now determined to get off the sofa and get fit again. I couldn't manage a single session at the gym during chemo, just went for walks during my "good week". Take care xx

[Pinkbaglady]

Sorry to hear about your weeping scar, Whitejasmin. Glad your scar is responding to treatment Riversidedawn.
Well done on the exercise ladies. I worked in a leisure centre for 19 years and still can't swim or ride a bike!!
I'm loving feeling well again! Catching up with friends and being able to eat all the foods that were banned during the chemo is wonderful. There may be a national shortage of prawns soon!!
3 more rads to go for me. I finish on Tuesday next week. Appt is 08.24 hrs, then have to be in Swindon for 11.00 hrs appt for heart scan and Herceptin appt at 12.30 hrs. After that no scheduled medical appts until the next Herceptin on 11 August, the day before I go to stay with my friend in France.
Might have to have a little celebration on Tuesday eve next week!
After so many dark days through the last 9 months I'm so grateful to have things to look forward to again. Love and best wishes to you all. xx

[riversidedawn]

Hi Whitejasmine, sorry your scar is weeping. Mine started last week too, I've kept a dressing on all week changing it every other day and it's looking much better despite daily rads. I'm also on antibiotics just to make sure it heals!

Sharnie, I've been exercising throughout chemo and since. I used to do yoga / Body Balance 3 times a week plus BodyCombat twice. I went back to yoga 3 weeks after masectomy and carried on 5 times a week throughout my treatment. After chemo I went back to BodyCombat as well. I was told if you are used to exercising then carry on, but be careful if you are doing something new.

Unfortunately I haven't done any exercise since the beginning of July because I can't fit my classes in with my rads timetable. My good intentions of walking and exercising at home every day just fell by the wayside, so I too have a belly which I never usually have. I thnk it's a combination of tamoxifen, lack of exercise and chocolate!!!

[Whitejasmin]

Hi Sharon I've noticed that I to have put a bit of weight on and need to start doing some exercise. Like you I've also been told to take it easy as I've been through a lot. Feeling as if I want to start doing things though suppose if we are sensible and listen to our body's it should be ok. Your holiday will be here before you know it. By the way my names Joyce. Choir was good we have a concert next week so it was good to get some practise in. xx

[Sharnie]

Hi Whitejasmin - don't worry about the spelling my real name is Sharon anyway! Glad you are getting back to normal. I am desperate to get back to my fitness, I used to go four times a week and it's getting me down now. When I ask about exercise I just get told to take it easy as I have been through a lot! I have been out on my bike, managed 23 miles last night. Not too sure about using my upper body yet as its still a bit tender and my classes involve boxing and press ups etc. I have started to put on weight round my middle - not sure if its the Tamoxifen or just not exercising, but it's getting me down. I just want to get back to normal life now! My holiday isn't until the end of August but I don't finish my rads til 3 days before we go which is worrying me but the hospital haven't told me not to go. I will just have to be sensible with high factor sun cream and covering up. Hope you enjoyed your choir practice xx

[Whitejasmin]

Sorry I spelt your name wrong. How long till your holiday now. My oncologist recommended me not to go till 3 weeks after I finish treatment. Oh well such is life.

[Whitejasmin]

Hi All just come back from doctors, left side of my scar (where I had a scab) has started to weep a bit. Thank goodness everything ok. Gotta go back next week for them to keep a check but if I get worried inbetween give them a ring. Hope your holiday goes well Sarni have a great time. Thanks to everyone for your encouragement really appreciate it.  Starting to get a few things back to "normal" (well as "normal" as one can get). Off to choir practice tonight it'll be lovely to see all the girls again. 

[Sharnie]

Thanks Jo good to know I will be able to enjoy my holiday! I had visions of staying in the room or under an umbrella for the whole week! I will obviously be sensible and hope my skin is ok before I go as I do have sensitive skin - having a patch test done in September to find out what I'm allergic too (had a bad reaction to make up in March just before diagnosis!) - just another three hospital appointments to add to the list! I know my way around the hospital now lol! Xx

[Jobey68]

Hi Sharnie, I did the lot, sunbathed , swam in pool and sea! I smothered my boob and area around in 50 factor in the morning before getting dressed then topped up during the day and I've tanned lovely and no reaction at all, did me the world of good to feel "normal" again I can tell you and yes leaving the hospital behind and getting on with your life is a great feeling 😊 Rads are fine and the time soon passes, don't be put off by what they may tell you about going in the sun etc, I just let it all go over my head, we are not stupid and I was well prepared to be sensible and keep covered in need be but all was well, good luck with Rads and have a fabulous holiday!! Xx Jo

[Maria_B]

Hi whitejasmin. I think I would have cried too. Especially if I'd gone expecting to know when it would all start and end. It's like another bit of control of your own life taken away and more uncertainty and waiting... I had a different experience. I had a choice of two start dates a week apart and they arranged all my appointments there and then. I did get a bit upset when I heard it was 5 weeks not 3.... Again something new thrown at me, which in "normal" circumstances I'd just shrug off.

I wonder if the staff responsible for treating us ever read these forums and reflect on their practice to minimise the anguish?

[Sharnie]

Hi Whitejasmin - one more appointment over! Hope you are feeling better now. I think there is just so much emotion below the surface when we are trying to keep it together that we all have a blip every now and then. Hope you don't have to wait too long for your appointments to come through. I had my planning last Thursday and start next Tuesday so I haven't had too long to wait. Take care x

[Sharnie]

Hi Jo glad to hear you got on ok on holiday. I'm a bit concerned as I go away 4 days after finishing my rads, I'm having 4 1/2 weeks worth - 15 sessions followed by 8 boosters. I'm off to Zante so it will be hot. I will stock up on high factor sun cream! Did you stay in the shade or sunbathe? I hope I can enjoy my holiday - it will be nice to get away from hospital appointments! I love swimming but would think the pool might not be an option if my skin is sore but maybe able to go in the sea ok. Just want to get on with the rads now so I can get my life back on track 😃 xx

[Jobey68]

Hi Whitejasmin,
Sorry for butting in on your July thread but just wanted to say I finished 3 weeks of rads on June 9th and it wasn't anywhere near what I was expecting, my skin was good all the way through and only went pink in the last few sessions, I used aqueous cream several times a day all through the treatment and carried on with my normal deodorant and soap/ shower gel, I was never told not too. I've now just come back from a week in Menorca and had no effects on my radiated skin although I did use 50 factor sun cream all over my boob and ribs on that side, I was worried after being warned to be extra careful in the sun but can safely say I didn't even burn a little bit and it was 40 degrees some days! Please don't get over stressed about rads ladies, they are pretty straight forward and 5 weeks on I'm as good as new 😊 Jo xx

[Whitejasmin]

Evening well everything went well this afternoon. Had CT scan and tattoo's in place.  Will have my appointments sent through in the next 3-4 wks.  All over and done with in about 20mins.  Came from there feeling absolutly deflated and cried all the way home (couldn't tell you why).  Just a waiting game now.

[missmore]

Good morning ladies

I have my planning meeting on 21st so I may be joining you July zappers

wishing you all well x

sheena x

[Sharnie]

Hi good luck today - I had mine last week. It was ok, I just had to get in position which I was comfortable in, well as comfortable as you can be with your arms above your head and laying on a hard bed! I then had a ct scan which was fine - better than an MRI! Had my tattoos done which hurt a bit but was all done fairly quickly - think whole appointment was over with in about 15 minutes. I was given all my appointment dates for the next four and a half weeks. Start my radiotherapy next Tuesday.

[Whitejasmin]

Morning All have my planning meeting this afternoon for radiotherapy. Feeling really nervous about it.  Didn't feel like this at diagnosis or op.  Husband taking me so at least I don't have to drive.  Hope you've all had a good weekend. 

[Pinkbaglady]

Sorry to hear you are having problems, Riversidedawn. Hope the antib's work quickly for you.
My hubby took me to the early appt this morning so I didn't have to drive myself today.
Looking forward to 2 days off now! Hope everyone is able to enjoy a nice weekend. x

[Whitejasmin]

I'm at Blackwood about half to three quarters of an hour from Cardiff depending on who's driving. Have a rough idea where it is as I worked in that area a few years ago. All the best for tomorrow.

[riversidedawn]

Glad it's going well Pinklady. I thought mine was too, until lunchtime when my scar began weeping. I called my BCN who said the surgeon was at the hospital for another 45 mins so get there straight away! Mad dash, saw her an hour later, she drained off some of my implant to relieve the scar, cleaned and dressed it, now have antibiotics and need to check the wound over the weekend, otherwise see surgeon again on Tuesday evening.

When I had my original mx with implant recon it got infected after chemo started so after 2 lots of chemo the implant was removed in December. I had an expander implant put in in May about 6 weeks after chemo and started rads a couple of weeks later when the wound looked healed.

Unfortunately the boob has tightened with the rads and put pressure on the wound. Fingers and toes crossed that the antibiotics do the trick. In the meantime I am busy growing my Tamoxifen belly in case I need a DIEP recon!!

[Pinkbaglady]

Where 'up the valleys' are you Whitejasmine? The Velindre has a very good reputation. Good idea to do a 'recky', it's well signposted so you should find it easily. Can you wave to my 'best friend forever' when you go for your planning appt - she lives about 100 yds from the entrance to the hpl! I'm using exactly the same products as Riversidesawn although I have to buy my own E45! My appt tomorrow is at 07.48 so have to leave home before 7am! But half way through then:) it really is a walk in the park so far compared to surgery and chemo. Best wishes to all.

[Whitejasmin]

Hi Pinkbaglady & Riversidedawn good to hear from you. Pinkbaglady yes it's at Cardiff I'm further up the valleys.  Not to sure where Velindre is so we're (my husband and myself) going down for a run on Sunday to do a recky.

Riversidedawn have heard that Bodyshop do a deoderant as well but not sure of that, does anyone else know of another one?  I have the same one as you.

[Pinkbaglady]

Hello Whitejasmin. Is that the Velindre Hpl in Cardiff? If so, I was brought up on Velindre Road, used to walk past the hpl every day on my way to school many years ago! Have loads of family and friends in the area still.
Day 7 out of 15 for me today. So far, so good and other than the long, daily, tedious drive to Bath all going well.

[riversidedawn]

Hi Tussie and Whitejasmine, I'm off for number 7 out of 15 today. Can't believe I'm half way there! I finish on 21st July. So far so good. Slapping on E45 cream supplied by hospital. Have to use only Smple products, shampoo etc with no colours or perfumes, deodorant without aluminium (Pitrock crystal), keep covered up from the sun and not allowed to shave my armpit........... very attractive!

It really is much easier to endure than surgery and chemotherapy, but traveling is tiring.

Keep doing your exercises everyone so that you can keep your arm above your head for 10/15 mins.

[Whitejasmin]

Morning All,  had my op on 15th May for lump and lymph node.  Am due to have my planning meeting at Velindre on Monday for 15 sessions of Radiotherapy followed by tablets.  Suffering disturbed sleep pattern and mood swings.  Feeling really good in myself.  Quite new to all this technical  malarkey. 

[Tussie]

Good afternoon! I am having 23 sessions, 15 of those are directed to the whole breast area and the remaining 8 booster sessions where the tumor was situated. The oncologist will mark the area where the tumor was once I get going with the rads.
Lovely evening here to enjoy, hope you are all well.x

[Sharnie]

Hi Maria, I am going to have 23 sessions, 15 followed by 8 boosters. I had grade 2 invasive ductal. I was told all the way along that I would be having 15 sessions so don't know why it's increased. I will ask at my planning session on Thursday and let you know what they tell me! I just want to get on with it now, I start mine on 21st July but have been told I do have some Saturday sessions, I will pick my appointments up when I go Thursday.

[missmore]

Morning Maria! 

I may be joining you this month, haven't decided whether or not to have chemo yet,  have to decide by Tuesday!  eeekk!

I was told that it was 15 sessions and maybe a booster at the end, not sure what that means yet? 25 sounds gruelling,  any info from the helpline here or macmillan site which is very good too

sheena x

[Maria_B]

Greeting July Zappers. Like a few of you, I start on 20 July. I will be starting three months after my first surgery and two months after my second. Both WLE for DCIS, the second to get clear margins. Planning appointment was fine and all appointments are at the beginning or end of the day so I can go to work. I even get an early one on a Thursday, day off Friday and late one on the Monday so I can go to the Cambridge Folk Festival for a weekend.

In fact the only thing that really shocked me is that I have to have 25 sessions. Reading forums it seems most people get 15, so why with DCIS, which is in the "Sunday League" of BC do you need 25? The oncologist's Registrar says that clinical trials have shown 15 sessions is effective for invasive BC but the research didn't cover DCIS so I'm still on the old protocol.

Also enrolled on a study looking at genetic markers and side effects of RT. They just took a blood sample, some topless pics and I have to fill in questionnaires at intervals. No benefit to me, but I hope it helps others. So looking forward to getting on with it.

[riversidedawn]

Hi Koshlake, I think every hospital is different. I have been told not to use normal deodorant as it contains aluminium but there's a crystal deodorant called Pitrock which you can get in Boots and I've been using that - not too bad despite the heat this week! Also Simple products for washing, E45 cream on the boob, up the neck and shoulder blade.

I've also been told no suncream, wear a collared shirt which covers neck and tops of arms, or a scarf! I've bought a big floppy hat to try and give me shade!