OCTOBER HOT CROSS BUNS

[Jill1998]

Guessing we were spoilt in Preston then ,WRVS tea bar with free hot drinks and small charge for toast and teacakes,made it a bit more sociable.Always had a teacake to give me the strength to drive back home!!!

[Fuffs123]

A biscuit, luxury! You can make yourself a cup of tea or coffee but that's it at Leicester. In fact, I took a tin of biscuits in for the kitchen yesterday, so people could have something and the staff were very grateful. No money in the budget for a tin of biscuits apparently, don't know whether to laugh or cry! Feel it's the least I could do, given the help I'm getting from the driver assigned to me from the RVS.

[Jobey68]

No creams for me either but they did give me a biscuit after each session for being a good girl 😉

[Fuffs123]

Just finished day 3, only 22 to go! My volunteer drivers from the RVS are fantastic. They pick me up and wait for me, then drive me home. So glad someone told me about them. No doggy bag for me either! Been told to use Aqueous cream or E45 so I'm slathering it on twice day. Not using any deodorant on the side being treated, rather odd doing one underarm but not the other! Went to a Big Pink Day for BC at my local hairdressers this morning and had a great time. Lots of cakes and some lovely people. Hope everyone has a good weekend x

[barb18]

My bag of creams lol. Second day today. Weekend off woo hoo 😊

[Jobey68]

On the home stretch Barb! Doggy bag?? I didn't even get a free cup of tea!! 😉

[barb18]

First day of rads, just 14 more to go. Got my doggy bag to take home 😜

[barb18]

Big hugs Julie. I know exactly what you mean. All I get is we will get thru it your strong. Well I'm not strong and just sometimes I need to cry. But others look at you as if you r feeling sorry for yourself after all the cancers gone. I start my rads tomoro and I'm stressing trying to fit my life around it. I've got a wedding next Friday and at mo I can see it far enough 💜💜

[Fuffs123]

Great post Jo. You sum it all up so well and I hope it helps Julie and anyone else where it all looks very black at the moment. Anyone else who says stay positive to me is going to get a kick up the jacksie or possibly strangulation!

[Jobey68]

Hi Julie, dont ever feel you have to struggle alone, everyone of us is here to help each other and know what your going through, I was on my knees when I was diagnosed and never ever thought I would recover any semblance of normal life again and if I ever hear the words " be strong" be brave" keep your chin up" again I won't be responsible for my actions!!!! No one who hasn't been through this can possibly understand how we feel, I did go back to work after my op as I couldn't stand to be home alone, I'm fortunate to work with good friends and family who all knew and I didn't have to keep up an act, I had many a melt down and Diazipam was my best friend for months! Eventually you just start to feel more at ease with it all, im still take antidepressents and have no intention of stopping, I'm 4 months on from treatment now and life is pretty normal again, I'm able to detach from the big C now and adverts etc don't bother me anymore like they did, but it's a rough old road that shakes you to the core and no one can tell you how you should be feeling, lots of love to you Hun Xx Jo 

[Fuffs123]

Hi Julie

I know just how you feel. I'm starting 25 sessions of rads on Wednesday and it's been a long haul since I was diagnosed in January. I've had 3 ops and a 10 day stay in hospital and at times felt pretty desperate. Energy levels are pretty low and I'm also waiting for some blood test results tomorrow. Certainly I've felt like I could strangle the people telling me to stay positive. No one who hasn't had BC will know how you feel but we here do. The things you could usually cope with seem to become impossible and everything seems to get on top of you. All I can say is that how you're feeling is how we've all felt at times during this very difficult journey and we all have bad days still. Anyone who says they don't is probably just putting up a brave front I think. Hang on in there and keep in touch. Sending you hugs. XX Francine

[julie_m]

Hello Everyone

Been burying my head in the sand and not coping too well the past week or so.

Was doing really well and feeling so much stronger then (sorry if it's TMI) but had a very heavy monthly, you know what, on top of trying to go back to work, death of a family pet and a very trying teenager and suddenly I'm on the bones of my a**e again  

Had radiotherapy planning appt last week and start rads on 26th Oct and just hoping I feel better and my energy levels improve before then. Ended up at the doctors on Friday as felt so unwell, and now awaiting blood tests as everything else was ok, but even doc said "you don't look well".

So sorry to moan on but just so fed up. Everytime I turn on telly or computer the big C seems to be in my face, and it's all people who are all so strong and positive and "I'm going back to work 2 weeks after op" etc etc!!! Well I am not strong or brave or positive just now, everyone deals with this differently and this is how I am right now and do not want to hear one more person tell me I am brave or stay strong, because I am not and can not, I am just wading my way through this crap as best I can right now !!!

So so sorry to rant on and feel sorry for myself as I know there are others in far far worse positions than myself and I will get a grip eventually and kick myself up the a**e,really tried not to do it in here but eventually realised that I needed to sound off in the only place I felt people would truly understand.

Hope things are going well for everyone who's having/awaiting treatments

Huge hugs and love to you all xxx  

[Jill1998]

All the best Egret,enjoy your holiday and good luck with the book!!

[Egret]

Hi Jill! Thanks!
Best wishes for work Jill! I am retired, that explains why I can fly away. I have a book to finish writing. Brain 😉 is back.

[Jill1998]

Good luck with your last session today Egret,it's a good feeling to finish if a bit emotional.I am due to go back to work Monday 4 weeks after finishing.I am still pretty tired but mentally need to go back to "the real world" for my sanity's sake I think.

[Egret]

Sorry Fuffs 123, I am the only one saying something different - but I seem the only one having like you more than 15 sessions - so perhaps I might be more similar to you.
Did anyone mention to you "0" (zero) pre-cancer cells? What was your grade? What was your bc size? Don't respond here, but you could ask the oncologist or a nurse to look into your file. Ask if you are having 3 weeks (40 grays, the norm), and are the next two weeks a bit of the same due to the size to be treated?

I feel like in a cage. But even my "rebellions" - twice abroad during chemo, once between chemo and rads, then in 6 days' time back to Spain - but each time I was very careful about access to medical care. We all need a release from somewhere. Mine is to fly away. Egret x

[Egret]

Hi Cesrabbit,
I am flying to Spain 6 days after my 20th rads session. The nurse today told me that in about 10-15 days, sometimes earlier, there were a chance of my skin cracking, even spitting. It is a bit a lottery,. Today, the skin on my boob is still perfect, albeit a bit bronzed. 8 sessions is 7 more to go, but for me after 8 sessions it was 12 more to go, and for Fuffs123 it would be 17!!! Some of us had awful experiences, and one person escaping some side-effects, might make it more challenging for others. How do you think
i felt when others were finishing and I had to continue? Did I have a choice to opt for 15 instead of 20 rads sessions? NO. Why? because my risk of recurrence is most probably higher than yours!!! Did I want the rads "boost" to zap definitively my pre-cancer cells having previously galloping cancer cells? You bet. Not all of us have a nice time. Egret x

[Egret]

Fuffs123, I got a terrible allergy (A&E "priority!") after I used a new hair dye after waiting for ages for my hair to grow. The hair dye seems to have PPD. I thought it was safe after a strand test and no reaction for 14 hours. I am on my second prescription of steroids and heavy antihistamine. I got "priority" at A&E because of the FEAR that my rash/itchy skin could go down to my boob! Then the rads would have to stop. You can do what feels right and good - but protect your boob!!! Egret x

[Egret]

Hi Fuffs, I think you cannot use ANYTHING on your boob, except Aloe Vera, Aqueous Cream (given by the hospital, I wash with my boob with this, it works.

Perhaps you should ask why you need 25, I got no joy from my old hospital, I got no explanation (and I did not sign the rads authorisation) but the new hospital (I managed to transfer) explained straightaway, it was a bit of a shock at the time. I needed a 4th week "boost" to take care of my "0" (zero) cell - my pre-cancer cells (5.2 cms, compare with my 2.6 cms lumpectomy). As my lump was grade 3 (fast growing deformed cells) there was a risk that the pre-cancer cells develop in my specific case. I knew nothing of this until I reached the hospital I transferred to. Perhaps this is the time to ask friends, neighbours and family to "donate" one day transport to help you and your husband! Some hospital have a service with volunteers. Best of luck, Egret x

[Egret]

I second this statement! As soon as I disappear, my Hubby goes for his M&S coffee and croissant! He has economised £3 parking after all. Egret x

[Egret]

Hello Gaynor,
Well done about the chemo!
Twenty radiotherapy sessions can lead to tiredness, because of the travelling to hospital and the cumulative effect of rads. I think it might be a good idea to get some leave to recuperate. The hospital might provide free parking - a godsend - and a huge pot of Aqueous Cream (oops, I said E45 cream elsewhere, i just check and it is Aqueous cream, I think it is the same). Don't buy anything yet because I used it liberally, and there is plenty left. I was told to use it for a month after my last rads, it just show how fragile the skin can become. I also use Aloe Vera (organic).
Best wishes with your treatment, Egret x

[Egret]

Hi Fuffs123, good luck with your 25 sessions, I am having my 20 and last session today, and I haven't sleep so I am going though the thread. It can be challenging to see people around you finishing, quite rightly happy and in a celebrating mood, when you know you have more. The other thing is that some people assumes that it is 15 for all, and a doodle - but at each travelling to a hospital, at each radiation - the tiredness increases. In my case the first 3 weeks were multi-rays (radiation of 10 - 15secs at a time, repeated from different angles. That was to deliver the NICE recommended 40 grays (gray is the unit of radiation). The last week was a "boost" I had "0" cells, or pre-cancer cells. The boost was one fixed ray, quite close to my skin. But treatments are specific to each if us, I can only tell of my case. Sending my positive thoughts to you, and do use that big pot of E45 cream gifted by the NHS (it contains lanolin, so if you are allergic to lanolin go for organic aloevera). Egret x

[Egret]

Hi vi55, some hospital offers a free parking space for the duration of the treatment. You need to ask the rads desk. As for swimming, I was told that it was better to wait for 3 weeks after finishing rads. There are incidence of skin breaking, and if chlorine can damage a swimming costume, it can also cause havoc on a fragile hot bun/boob skin. The hospital gave me a huge pot of E45, I used vast amounts three times a day, and on my 19th radiation session, my skin is holding well. I have not touched soap or anything else on my L boob. Egret x

[Egret]

Hi Reikiran, my L breast lumpectomy was above my heart, and this resulting in a special way of "holding breath technique" via computer, mouthpiece and nose pinching - the very latest technology a hospital can offer (still rare in the UK). The rads are targeted precisely. Out of 15 minutes if you are lucky, 25 minutes if you are not, no more than 1 minute is actual radiation. in my case 24 minutes were placing my body, that dreaded mouthpiece and from then on breathing only through the mouth, eyes on computer screen, nurses measuring, dry runs of my breath holding. L breast can be bad news. The rads don't go through your body, but there can be some leakage. In my case I was FORTUNATE to get the breath hold machine, because it lessened that leakage. However I was told by my oncologist, that the leakage to my L lung will result is a slight scaring which will show if I have a lung X-ray. The oncologist and nurses are extremely experienced and professional, they will do their best to give their best, and the Alddenbrooks scored maximum for staff dedication, but that was not picked up by the media. Best of luck, Egret x

[Egret]

I joined so many threads...But Hi, I am Egret, I will finish radiotherapy today. Not every one is lucky, my sessions were 25-30 minutes with a awful mouthpiece between gums and teeth, my nose was pinched to force me to breath through the mouth, my eyes were riveted on a monitoring screen showing how I breathed - all this to save my heart from radiation leakage with long term coronary risks. When the light on the monitor is green, I have to hold my breath just so. I had this done 3 weeks, at the beginning the mouthpiece was the wrong size and pressed strongly into my gum - tears came to my eyes. On the 4th weeks - and one week more is DEPRESSING, I got the in and out on 15 minutes. The two experiences can hardly compared. Just to let you know, that radiotherapy differs from person to person, and "nothing to worry" is only for the VERY FORTUNATE. Egret

[Jill1998]

I was exactly the same when I went for my planning meeting and CT scan Barb ended up blubbing in the waiting room.You are right it makes you feel vulnerable again .A lot of people feel emotional after a few sessions of rads too, not sure if that is a side effect of the radiation or tiredness or both .

[barb18]

Had my ct scan yesterday. I hated it I was very tearful, just felt so vulnerable, like a piece of meat. Asked about smell from under my arm that has returned. Advised its due to nodes being removed, it can upset the sweat glands. Start rads on 15th, changed my appointments to morning for me. ☺

[Reikiran]

So annoying...i went to see my Oncologist over a week ago, and asked to go to a different hospital for rads as it will be nearer to me, Addenbrookes in Cambridge instead of North Mid in London. Ive been waiting fpatiently ever since for the planning app and it turns out im actually waiting for another Oncology app with Addenbrookes as they cant just give me the rads, i have to be re referred there first! The waiting to start is really frustrating, i am so desperate to just get on with it (and the rest of my life). Why does every part of this journey take soooooo long? 

Sorry about the big moan folks x

[Jill1998]

It's monotonous but you do get into a routine.I took up any offers from people who said they would come with me and tries to do something lunch or shopping on the way home to try and break it up a bit.Good to have the days marked up in some way and cross them off as you go.Also plan some nice(not too strenuous ) things for the weekends.

[Fuffs123]

Thanks Eileen and Jill for the info on the boob creams. I'll go with the Aqueous to start with I think and see how we go. I've spoken to the radiologist again about the 25 sessions as opposed to 15 and he is quite adamant that I should have 25 due to the size of my boobs (H cup) and because they will be treating quite a large area. Against my nature (!) I have decided to go with his advice and go with the flow. Keep me out of mischief for 5 weeks!

[Eiljones]

Hi Fuffs123,

I used Aqueous Cream for a week before rads but changed to E45 during rads because the doctor told me that E45 seemed to work slightly better and have the edge over Aqueous.  E45 has been great for me and it is only now that I have finished rads that my boob looks pinkish. They told me to continue using E45 cream for another three weeks and have given me some hydrocortisone cream in case my skin goes itchy.

Eileen.

[Jill1998]

They are just dots smaller than a freckle ,I can't find one of mine it's so small.

[Jill1998]

They take a lot of measurements and you have a CT scan, they give you 2 or 3 tiny tattoos to help them line you up right each time you go for treatment .

[Val235]

What happens at your planning session and whar are the tattoos? Sorry not got to that stage yet

[Jill1998]

Aqueous cream is cheaper and has less added to it ,I had a reaction to the lanolin in the E45,never reacted to it before but the treatment makes you more sensitive.

[Fuffs123]

Fantastic Eileen. My sessions start on 14 October and I've been told to prepare my boob by using Aqueous Cream a week before this. I was thinking more of E45 myself. Any experiences of this?

[Jill1998]

Well done Eileen,another one of us over the finishing line.

[Eiljones]

Hi ladies,

I finally got to ring the bell today.  I was so excited and it was an amazing feeling. 15 days or rads done - at last! Good luck to everone else who are still having rads.Eileen,

[Jobey68]

Bombay is another one of my favourites Francine, when i was diagnosed everyone was sending me flowers but my brother sent me a lovely delivery of posh Gin! Bless him 😍

[Fuffs123]

Got to be Bombay Sapphire for me! One of my friends asked what they put in the gin to make it blue! She was rather embarrassed when I told her the bottle was blue, lol. We still laugh about it.

[Jobey68]

Cesrabbit a women after my own heart!! A rebellious Gin drinker 🍸😜 and I hate using moisturiser too!!!! 😝😝

[Jobey68]

Love Hendricks Gin 🍸🍸 Slumming it with duty free Tanqueray at the mo! 

[Jill1998]

Yeh,I remember you hitting the kale big time C!!!Hendricks gin is v good!!!!Glad you are not having too many ill effects of rads.I have moved on from Galaxy to Green and Blacks as it's healthier!!!

[Cesrabbit]

Ha. I too am a rebel. I plaster on deodorant daily, have hot bubble baths nightly, forget to slap any cream on boob as never been a body moisturiser type of gal, wear under wired bras, and as yet, after 8 sessions, had no side effects at all. Maybe the odd ache but no pinkness...but maybe at end of 15? My anticancer diet which consisted on nutribullet spinach kale and other greenables and NO alcohol ever again EVER has now been replaced with regular Hendricks G&T which is always served with lashings of cucumber! Oh and cakes....and chocolates - which my hospital leave out on reception desk Jill for all us patients to help ourselves to!!

[Jobey68]

That's My kind of diet Francine! I remember having my rads consult on last day and being given all the horror stories about looking after your skin and I piped up and said well we are going abroad in 2 weeks and was told well that's not really recommended! Ummmm like I'm going to cancel ...... Can safely say after just having got back from second holiday I've had no reaction at all from sun, sea or chlorine! I don't flash my boobs but was in bikini all day and hey no problems at all!!! As my darling mummy used to say "agree with the health visitor then show them the door and do things your way! " 😜 Xx 

[Jill1998]

They are all good for the soul which is important !!! Francine I would go with 15 if they give you a choice , my skin problems only lasted 2 weeks and I didn't have to travel 60 miles a day to sort them out.

[Fuffs123]

Ah Jobey, a rebel like me! Like it. I'm just going to do what feels right for me and what's more I'm going on a special anti cancer diet, cake, choccie fingers and mini Cheddars! Oh forgot the vodka.

[Jobey68]

Francine i used my normal deoderant and creamed up with Aqueous, im a bit of a rebel and would nod in agreement then do what i liked!! I used Pure Aloe Gel only in the last few days and it really took the heat out, I had a rota of people lined up to take me but i was fine and although i had someone with me i drove most days, dont worry yourself too much about treatment its soon over and you dont feel a thing Xx

[Fuffs123]

Hot chocolate and marshmallows, no such thing at Leicester Royal Infirmary or I didn't see any at my planning appointment! Had they already been scoffed by starving people waiting 3 hours for their hospital transport home, like me.? ! I start my rads on 14 October and have been told 25 because of my big boobs! Jill, thanks for the DM by the way. Still not sure if I'm going to tell them that I only want 15 and I'll take a chance on the skin problems. An extra two weeks of the travelling to and from hospital using the transport service is an extra strain on my husband, who will be looking after the business. I too am wondering what cream etc to use and when to use it. Lots of ladies recommend Aloe Vera Gel, which they keep in the fridge. I notice also that some of the American sites recommend lanolin. I've been told that I can't use any deodorants that contain metal, aluminium hydroxide I think, which is a common additive. They said to use only 'natural' ones, whichever they are. Any ideas? Also told not to use talc but I love my Cuticura after a shower! Happy days😒😒

[Jobey68]

Eileen I'm not very big busted either and was told the same about having fewer issues with rads, I'm sure they said it was due to having less breast tissue, they were right though as other than a slightly pink boob I was fine Xx