just got to have a little rant.....

Going through breast cancer treatment Radiotherapy
1

Good Morning lovelies, we i hope you all dont mind but i have to vent this morning before i fly off into orbit!. Before my last oncology appointment to discuss rads and treatment, i got a letter from breast unit to ask if i wanted every copy letter sent to gp etc after appointment with the various drs i’d already seen along the way. 

Now some people may like this information, but to me once id been told it,  it put me in a high anxiety state and i wanted to try keep ontop off that not read it all again and start googling various bits of info consultant had ad libbed.

Anyway i ticked the ‘i do not want to recieve any copy letters from appoints or gp copies’ for my own sanity. This was 3 weeks ago. I handed it in at desk at breast unit.

 

Today, i sat here this morn trying to calm myself ready for the start of my Rads at aintree first thing monday, im having major anxiety about them, when  suddenly postman comes up the path. Its my birthday today so i try to jolly myself along keeping cancer thoughts out my head at least for 1 day. The postman pushes thro a ton of birthday card, omg i thought people must be trying to cheer me up at this time how kind. 

But as i slow opened them all 4 of them it was copy letters from oncologist to gp to surgeon to bc nurse etc etc etc…i was right back to square one mentally sat in tears at the reality of it all. Why oh why dont they listen.

 

I know all the info in the letters i know, but to read it all again from day one omg . So thats my rant ladies im sorry, but i tried so hard today to have a day where i didnt cry.

 

So im off to make cup of tea now and try calm myself down. Thanks for reading…and stay well lovely ladies xxxxx

2

So sorry to hear that happened lucaboo - even in simple everyday situations I get mad if people don’t listen to a simple request, so if that had happened to me I would certainly be in orbit. (I’m someone who likes ALL the letters, as having the info makes me feel in control, but that’s not the point, the point is that you DIDN’T want them.) So I’m sorry it tried to spoil your birthday - I really understand your fury. Try to enjloy the rest of the day a bit.

Could I offer a bit of reassurance about the rads - although there is always fear of the unknown, once you’ve had your first session you will wonder what you were worried about - it really is fine and the worst part for me was the sheer tedium of going to the hospital daily. I didn’t burn, nor feel fatigued - drink lots of water and do whatever your unit tell you about creams. Have the best day you can under the circumstances. X

3

Very sorry, Lucaboo, to read of your distress, especially as today is your birthday. I really don’t know what to say, except that I do hope the day gets better for you as the minutes pass. Many virtual hugs to you.

 

I’m one of those people who does like to keep written records, so I put letters in a ring folder and refer to them if I need to. Even so, I do understand why you don’t want reminders of what you already know; anything in writing does tend to hurt much more as it jumps off the page to us and won’t go away. 

 

As for your anxiety about rads, it is very understandable, but I’m sure you’ll find that once treatment has started, it is nothing like as bad as it seems at the moment. After my first three sessions, in which I was getting used to things, the time passed very quickly and I was able to pretend I was the star of a sitcom. The screen in the goggles in front of my eyes was quite interesting, and having to concentrate on the radiographer’s instructions to breath in and keep the green bar within the blue box for 20 - 25 secs whilst the machine worked, took my mind off everything else.

 

It’s now a little over two weeks since my last rads session, my breast is still rather pink and the nipple also, but otherwise the only side effect has been fatigue, which I was advised is very common. So, I’ve bought myself a couple of nice, linen shifts to wear over linen trousers on hot days. Aveeeno cream rubbed into the breast, armpit and left arm twice a day has helped tremendously, as has drinking plenty of water. Sainsbury’s do some delicious Juicy Water with lemons, limes and spring water, and oranges, lemons and spring water.

 

Treat yourself to what you fancy.

 

All the best for today, tomorrow, Monday and beyond.

4

Hello Lucaboo

 

Just want to add my birthday wishes and sympathise with your little rant, so understandable too, I feel both ways, part of me wants the info and the other part wants to ignore it totally !

 

I too too am starting rads on Monday, been fretting about creams and SEs, - but happily I’ve been reassured by people on here and have got the recommended creams on standby…let’s remember we are going through this together, loads of others too…?

 

Anyway, birthday Leo, remember you have ‘a natural optimism and a love of being spoilt, or at least being indulged a little,’ ( - according to my friend who knows her Zodiac, when I pointed out that we all like a little treat, she said Leos LOVE them…!!) - .so enjoy a treat today, you deserve it, have a great day.

 

Thistle x

5

Lucaboo… So sorry that this has happened today I know you are worried about Monday but honestly you will be fine it’s not nearly as bad as you imagine. I just wish my appointment was in the morning so I could be there to support you but rest assured I will be thinking of you and waiting to see your post that the first one is under your belt. So happy to have today and tomorrow off but can honestly say apart from being a bit pink I have no other se. Slapping the cream on at every opportunity and drinking loads of water so make that your mantra for the next 3 weeks. Sending you birthday wishes and hugs by the shed load. Xx Chris xx

6

Hi
I just wanted to add that I too do not want all the information. It just makes things worse for me. I’d rather not know… Will just end up googling and worrying unnecessarily.
For me the letters are always obvious. They have their official stamp. Just dread them.
Is it possible for someone else to open them and if its nothing to worry about, just file in case you need it? I have a stack of letters that are stuffed in a file, that I never want to see. Some like all the information. I, like you, prefer not to. We all need to find our own way through and you have chosen your own way of coping. I suggest you ring the secretary and explain.
I would echo others and say, radiotherapy is very doable. I strangely enjoyed it ( and I’ve heard others say the same). I was doing something positive to get rid of it all, and I had different friends and family that came with me, and we had a lovely catch up.
Best wishes
Sue xx

7

Dear Lucaboo, Happy Birthday for yesterday, hope getting the rant out of your system helped??
I can remember feeling anxious everytime a letter came throgh the door. I just kind of opened them but didn’t read them as seeing everything in black and white made it even more real. But i filed them away and took my file to all my appointments as a kind of safety net. No idea why but prob because i wanted to have everything to hand in case of anything.
Please don’t worry yourself about the rads. Im the biggest stresshead ever and got myself really worked up but all for nothing. Again, rads was like my security blanket and i felt very much in control knowing the zaps were pinging away at me killing off any nasties hiding in my boob.
As you will hear over and over, drink heaps, moisturise at least 3 times a day and remember the actual sessions are pretty much less then 10 mins from the second you walk in to the room. Its just the bleeding trip there everyday thats the faff!

Good luck tomorrow, you may well find its a complete anti-climax!!

8

Lucaboo

 

We are going to be fine!! Your appointment is at 8.45 so you’ve got 15mins on me, mine is 9am, let’s send each other positive vibes…

 

Know what you mean about the ‘anonymous thing’ , I got referred to as ‘this 64 year old lady…” - made me feel ancient as well as an impersonal sort of statistic… cheered myself up by thinking ‘lady? Nah - more retired rock chick!’ ?

 

Well - we can at least use our imaginations, if nowt else - ?

(Appletree, a drama documentary, that is certainly one great way to deal with it - hopefully my over active imagination will not turn it into an episode of a particularly difficult case for ‘House’ …)

 

All the best for tomorrow - let’s rock on and kick it…

 

Thistle xx 

9

Evening Ladies
Just wanted to say best wishes for tomorrow.
The first one is a little daunting, because of the fear of the unknown. It takes slightly longer on the first one too, because they’ve got to get the positioning right. But, you will soon get into the swing of it all, and it will become easier.
I’ve just been on another thread, talking about fatigue, so it’s worth mentioning here, drink plenty of water, at least 2/3 litres a day. It really helps with the tiredness.
And just to finish with,… A little story from my rads.
They always had the radio on in the room. One day, as I was lying there, Frankie goes to Hollywood came on, with their classic song ‘Relax’, and the best line ever… ‘Hit me with your lazer beam’!!
I thought someone was taking the p***!! Still, made me chuckle…
Sue xx

10

Lucaboo… Sue got your message, thanks for your kind words and support means a lot to know we are there for each other.

Like Thistledown I like to think I am mature rock chic who is retiring disgracefully it’s hard to recognise myself when referred to as this 59 year old woman. When I read my letter I thought bloody cheek there are still loads of years left in me!!

Hope you manage to get a good night’s sleep in advance of your early start tomorrow. This time tomorrow you will have one session under your belt and can start count down to the finish.

I have been up since 4 this morning think it’s a combination of the heat and the Letrozole so kicking husband into the spare room tonight and turning the fan on to full blast to see if that helps.

I know what you mean about the gowns when I had my planning meeting they gave me a paper towel to cover my modesty however tommorow they will give you your very own stylish gown that you get to keep for the course of your treatment. It’s very haute couture with fetching velcro fastenings. Not something you would wear for a night on the town but practical for the task in hand ha ha.

Anyway off to water the garden before the nightly ritual of water more water and moisturise before bed. How very rock chick life is at the moment Speak tomorrow. Chris xx

11

Oh, thats awful!! Really feel for you.
Sending you a massive hug xx
Let’s hope for better things tomorrow…
Sue xx

12

Thankyou to all the lovely ladies who have taken time out to support me it so keeps me going. Ill try again tmrw and maybe i will be back on here saying one down! Love and hugs xxx

13

Oh my darling lady, what a bloody pain in the arse!!! Massive massive hug to you xxxxx

Couldn’t make it up could you??

Rest easy that you’ve been through the worst case scenario. All you need tomorrow is for the fire alarm to go off ???

Please let us know how it goes??

Much lov x

14

Lucaboo. Sue by the time I got there this afternoon they were running around an hour and a half late. There were however people still waiting as I left who were waiting when I arrived. Don’t know what is going on. Its a new unit with new machines so I have no idea why they are breaking down. Anyway all seemed to be working as I left so fingers crossed for you in the morning. Chris xx

15

Lucaboo 

 

Just seen your post, - feel really gutted for you, that’s awful ! As Appletree says, it’s our under-resourced NHS behind problems like this… Not impressed with the embarrassment of the male staff, either, but I have to say my post-op nurse was male, and he was lovely, - admittedly I was full of drugs that night and couldn’t have cared less about modesty then anyway, but hey ho.

 

Like you, I was up at the crack of dawn, after bad night’s sleep…shower, breakfast was water, a banana, (no appetite…) and painkiller in anticipation of the upraised arm and as shoulder is still recovering from the 40 minute planning session, it’s a bit creaky and sore. Arrived early - 8.30, (appointment was at 9) to be told session was to take place in main hospital building for some reason - panic to find it in the vast bowels of the place but got there eventually…

 

Turns out the machine I have been scheduled to use for the duration was having it’s service that day…?- so it was a long wait for the one in the main hospital, but once in there it went ok - and even though I am a left-sider, no breath hold was required, glad of that ! Shoulder was wincingly painful until they shuffled me down the bed and that released the pressure a bit, lots of realignment and x-rays later, the session began and was over virtually in a couple of minutes ! Weird how the machine bit was out of sight during the actual session but was in my face during the x-ray alignment…

 

So really, it was absolutely nothing to be worried about, and you will breeze through it, I do hope tomorrow will bring no delay to you or your poor lift ! (Mine (husband) had to go back into work as he had important meeting, and the delay was stretching out, so thank goodness my daughter had popped out of her work to come and lend moral support - went home with her…) 

 

Had to laugh though, as during the x-ray realignment, I wasn’t aware that that was what they were doing, I was convinced I was having the treatment itself and I could feel every supposed laser beam and twinge as it got me…but it wasn’t and hadn’t even started…

My imagination is too much sometimes, unfortunately drama documentary/Bond-type scenarios had left me, except probably the Bond scene with the laser machine ! ??

 

Keep positive and tomorrow will pass…sorry that I am one ahead of you now, though. I really wish we were local and able to help you with your lifts, (as you are the same weeks as me), - you’ve enough to contend with without the worry of getting there…I know I’m very lucky as a non-driver to have my ‘escorts’. 

 

Sorry for going on a bit !!

 

Best wishes for tomorrow xx

 

 

16

The worst melt down I had was a huge panic attack while on my way to a meeting in London.
Ducked into a hospital I was passing and it just all came out in front of total strangers.
Everyone was fab. Hugs, handholding, water, tissues. All from total strangers.
After that i decided there was no point trying to work while having rads as im an emotional soul!!
Taking time off work was the best thing I could have done.

Afterall, we are the most important ones in all of this so we can do and behave how we like!!!

xxx

17

Thistledown-you mentioned the location of the zapping and the x-ray?
On the machines i went on, i was zapped to my right boob. Partly coming from the direction of top left for one zap, then the machine moved over to my right side and I got another zap coming in bottom right. So whole coverage in the end. When i had the boosters they were head-on. I asked why and they told me that the zap from the boosters is more targeted and can be applied head-on (or should that be boob on??) as the zap doesn’t go deep enough to do any internal damage.
And the x-ray was boob-on as its a harmless zap.

I had an induction session with 5 other ladies before I started my course. It was about 2 hours with a tour of the unit (my treatment hospital has 12 machines) and a powerpoint presentation that covered everything that would happen.

Did anyone else have that?? It was really handy. Although i did have one of my meltdowns as reality hit. Strangely enough I actually enjoyed the sessions in the end, for some obscure reason!!! Silly mare…

18

Thankyou Sunflower and Sue c…for words of encouragement and support it certainly keeps me going. I got my 2nd one in today 20muns early and 4 men only nurses omg it makes me smule to myself u couldnt make it up really could you. Rads are going ok feel bit achey under arm and get banging headache after each one. Ive drank loads and moisturized and had few pain killer so im not complaining there are people going through far worse than me. Hoping all you lovelies are staying well and getting stronger by the day…love and hugs xxx

19

That’s good Lucaboo, glad it’s going OK.
I think you’re doing all the right things. Rads can make you dehydrated hence the headaches and fatigue.
Always made me feel uncomfortable with male nurses, but they were always prefessional and I just had to get on with it. How many are you having? Are you having the boosters too?
Sue xx

20

Third session today, yay, only 12 to go !!

 

So far it’s trouble free for me - fingers crossed and everything, except I’ve been a bit worryingly pink in the affected boob since my TM - the (female so far!) radiologists keep making concerned noises about ‘am I moisturising ?’ …Yes, so far I’ve used Aveeno but today (at my daughter’s suggestion and with the radiologists’ blessing) I am trying a baby moisturiser that’s recently been in the news as being a bit of a wonder cream, and have to say it seems really nice, and even seemed to reduce the Lily the Pink effect I’ve lived with for weeks…? - all nice natural ingredients and here’s hoping !! 

 

Lucaboo, so pleased to hear you are getting along well too - albeit with headaches and males (!) but good on you… we are getting through this…

 

Lilacmoon, thank you for the info regarding the machine ‘workings’ - would really have appreciated that induction course you had as I find it still totally mystifying, watching this thing whir round and about…think there were three directional zappings from the noises and movements happening today, (I struggle to hear the noises though, with my deafness, but am fairly sure… ?)

 

We have no bell up here ? - tempted to stick a ringtone on phone for the end of treatments day !

 

Roll on ringing that bell for those of you that can, and those of us that will do it mentally.

 

Good luck all, and thanks for the support !