First radiotherapy tomorrow - I feel overwhelmed with my diagnosis

[adoptedmanc]

Hi @LaceWing 

I was asked by my breast surgeon where I was with regards to menopause: my honest answer was I’m not really sure. After a lifetime of slightly erratic relatively heavy periods, over the past 12/18 months I’ve had a few light bleeds spaced at anything between 6 and 9 months, but I’ve not hit the “magical” 12 months of being period free. I have assumed that this is due to menopause as there was no other reason for me to miss periods and I’ve had a few flushes/night sweats. The surgeon requested a blood test which showed me consistent with being post menopausal and he wrote to my GP asking that Letrozole was prescribed. 
I queried this with my BCN as my understanding is one blood test is not necessarily definitive (unfortunately she was very short with me and basically said “fine it’s up to you oh and ignore the invitation for a bone density scan if you go on Tamoxifen” I posted about this on another board) but my oncologist countered this and said she’d speak to the surgeon (and not to take the BCN’s attitude personally 😬) but I’ve not heard anything further.
It hasn’t helped that the surgeon’s original letter was typed on 24 August but not posted until 5 October and my oncologist wrote back to him on 7 September saying “please can we discuss your endocrine therapy analysis” 

I’ve chased my oncologist!

xx

[LaceWing]

HHi @adoptedmanc  I am intrigued that your anti-hormone treatment is still under consideration.  I started mine at diagnosis.  Just a few mild warm flushes, and slight wrist aching but nothing really to be worried about.  Hopefully, your oncologist will advise you on how they will proceed with any further treatment.  Keep well!  
Regarding my radiotherapy, I am moisturising about three/four times a day using the gel provided - so cooling.  I have no skin problems so far.  

[adoptedmanc]

Hello @LaceWing 

So glad to hear you are feeling a bit less overwhelmed. I got my review on day 12, and yes expected a “medical” appointment and apart from a quick check it was much more about “me”. I also had a call from a physio where she also asked about “me”

I’ve now finished my active treatment (but still haven’t started my hormone therapy as yet due to a debate between my oncologist and breast surgeon not helped by a less than helpful BCN but that’s another story 😜) and starting to wonder “what next”? There’s a really helpful article on another post by a clinical psychologist about the long term affects that a cancer diagnosis has on you: I recommend reading it. 
I have very much concluded that the help and support you get through these forums & other support groups (I am in touch with Maggie’s) is invaluable on this rollercoaster ride!

xxx

[LaceWing]

Hi @adoptedmanc  I have now completed three days of the 15 scheduled.  So far so good.  Like you, I am lathering on the RT gel that was given.  No discomfort so far.  I feel I am getting to know the individual radiographers and we can have a chat.  
Also, amazing, today i was booked for a “review”.  I thought it would be a matter of checking the technical aspects of treatment (a bit like when they check your mammogram to see if it’s okay) but No, I met the Support and Information person.  She spent an hour with me and opened the conversation with - “Hi, well, you’ve had a lot of difficult decisions to make over the last few weeks”  I could have kissed her.  Yes, that’s exactly it.  Everyone has been saying - you have options.  It’s your choice.  Help, no more options/choices, please. I’ve made it this far.  Let’s get this done!  So we had laughs and giggles, and shared information, and stories.  I felt empowered again. No doubt there will be ‘down’ days, but I’m good right now.

Sorry to ramble on, but after speaking to her,  I feel clearer now than I have since all this started just nine weeks ago.  I agree @adoptedmanc that opening a conversation with family or friends about yourself and your diagnosis or treatment inevitably leads away to some anecdotes about others you know nothing about.  I hope you will continue to do well and avoid and discomfort from skin irritations, etc.
 Hugs!

[adoptedmanc]

How is it going @LaceWing?

I finished my radiotherapy last Wednesday, for me at the start it felt like receiving my diagnosis all over again (thankfully I’ve only had to have surgery and radiotherapy and I rationalised it as “you go into hospital for surgery for a million different reasons….you only have radiotherapy for one reason: cancer”)

@Jaybro’s comments are so spot on, I have found when talking to friends and family they all seem to “know somebody who…” which is well meaning, but talking to “somebody who actually has…” makes such a difference 

I’m only one week post radiotherapy, fortunately (so far!) I’ve not had nasty skin reactions (I was fastidious about moisturising 3 times a day). 
I hope you manage to get into a routine and get through without too much hassle

xxx

[LaceWing]

Thank you to everyone who has responded to me.  Last night's feeling of anxiety has dissipated now.  I attended for my first radiotherapy session this morning.  Not completely plain sailing as I had a different appointment time on my schedule to the one on theirs…!  However, they fitted me in.  Then I had a few questions - skin care, etc, and was told that they had already explained this at my first appointment.  Duh, today was my first appointment!  Not an inspiring start.  

Thank you to @Jaybro  for your useful tips about hospital staff focussing more on treating the cancer and not so much on the patient.  I agree.  My breast cancer nurses too are focussed on the next step of measuring for a personal prosthesis, and “moving on”.  They tell me their problems with case load - it seems I’m a good listener!

I, too, dislike the “battle” analogy; fighting, surviving, being a brave soldier.  I just want to deal with change in my life as best I can. I don’t want to feel like I have somehow failed if sometimes I don’t feel so tough.   I want someone to talk to (not family, not friends, just now), someone to whom I can say what I am feeling rather then “putting on a brave face”.  I will contact the nurses here and talk to them.

Thanks too @Jaybro @for the useful tips about creams and antiperspirants.  Tomorrow, I will attend for my session, and smile at everyone, and be in control of how I feel and who I am. There’s more to me than just a cancer patient.  
My best wishes to you all and hugs for your own journey.

[Jaybro]

Yes,  you’ve put your finger on it. You’ve been through the mill, physically and emotionally, and the hospital will have tended to the physical needs vey well but they are cancer-focused and maybe not so great on the emotional side unless you have a brilliant bc nurse as I did. Also owing to the pandemic, many hospitals have pared down their support services to leaflets and wigs which doesn’t help either. Do you have access to a Maggie’s Centre because you can get support there. Breast cancer can feel very isolating and leave you feeling very vulnerable so it’s good to be able to tak to someone who understands, not a friend who will want to fix you.

You don’t need to be a brave soldier. That may come from childhood or from the battle analogy used s often. Personally I think that sets us up to fail. We are all human beings who will try our best but not always be up to the challenge in as tough a way as we’d like. Don’t be hard on yourself. You are bound to have good phases and less good phases - you’re human.

I found radiotherapy a doddle after chemotherapy, the hardest part being the daily visits. The first session is the most difficult because you have to be passive and let them shift you about. They find the right positions, which are then lightly tattooed for future alignment. After that, you just strip and assume the pose. It takes 5 minutes tops, unless you fidget. I was distracted by stickers of sea creatures - I was on the machine used for children! Mild fatigue and a bit of itching two weeks later was as bad as it got. Keep moisturising your scar and the treatment area (don’t forget your back - it goes through) and use a non-oily cream like Aveeno or Aqueous which my hospital gave to me but you can buy over the counter and through Amazon. For an anti-perspirant, get a crystal deodorant stick. You just moisten the tip and rub. It contains nothing that would interfere with radiotherapy and lasts forever (I’m still using the one I bought in 2005 and it’s barely reduced in size). Health shops like Holland & Barrett sell them.

A breast cancer diagnosis turns your world upside down and removes your sense of safety. Feeling overwhelmed at times is natural. Let the tears come if you can. Ring the nurses here to talk about it - they run a wonderful service. And forget the brave soldier. Forget the brave. You just do your best because there’s not much choice and it will most likely save your life. 

All the best

Jan x

[Caryl]

I can really empathise with the feeling of being overwhelmed. I am sure that it hits us all at some time during the process. Mine was on the day of surgery. I think for me my diagnosis meant I wasn’t in control, and living alone with no dependents meant I had always felt in control of my life. The last few months have been so different!

Good luck for today. I hope you have a good experience of RT. I finished mine last week and so far have had no side effects although I know I may still get some. It was far less scary than I thought it would be and the staff were so friendly and kind. 

[Tili]

Dear LacyWing,

Wishing you lots of luck for tomorrow, I was extremely stressed when I had radiotherapy, however for me it was the easiest part of my treatment……finger crossed all will be well for you.

As you said everything has caught up with you, this is another step to take, hopefully the last one.

Big hug to you Tili 🌈🙏

[Guest user]

I never felt anything like that during my treatment in fact I felt 'safe' during it all - those feelings you describe came to me once all my treatment had ended.
The nurses were always lovely with me very professional but extremely understanding I would lie there with my eyes closed and wait for them to say 'ok you are done for today' they made me feel relaxed (as relaxed as you can be) lying there😁
I did not think of the long term effects of the treatment I just wanted to complete all the sessions 15 in total with a 9.00 pm start and then head for home (I always kept that vision of home in my head) it comforted me.

I never felt a thing during my treatment (lucky perhaps) but I never feared going to my appointments, the place was busy but cheerful.
Hopefully, once you have been and seen how it all works you will feel a little less stressed -it is a little daunting when you first walk into the room but they help put you at ease and you will soon get used to the 'set-up'. I used to wear whacky hats which they said 'brightened their day'😂 nice to know I have my uses.

The whole ordeal is a roller coaster, I think I just went with the flow through it all (I did not want to analyse any of it) wrong maybe, but there was nothing I could do outside to get through it all and retain some sense of being I live alone so I worked very, very hard to make sure I did not dwell cannot remember how many TV Christmas films I watched along with other rubbish but it felt better than screwing up my head - we are all different, it's what works for you.

Lots of good wishes and hugs
Poppy xx

[Jill1998]

Yes - I cried during my radiotherapy planning session and several times during the sessions - it was like everything caught up with me - not sure why but I think radiotherapy made me feel quite vulnerable and the few minutes of aloneness when the radiographers left the room fed into that . 
you wouldn’t be human if it didn’t hit you from time to time - my GP said to me at the time  “ you can’t underestimate the impact of being faced with your own mortality “ .

Good luck tomorrow - what time is your session ? 

[LaceWing]

Ever since my diagnosis, then mastectomy, then recovering, then attending appointments to discuss further treatment, where i have tried to be sensible, a “brave soldier”, tried to be intelligent and informed.  I have been positive all through this. I have never termed myself “a survivor” as I feel that offers the possibility I may not have been.

But tonight, I am consumed with undefined anxiety about my forthcoming radiotherapy, not about the process, but an overwhelming feeling of what happened to me over the last few weeks.  Has everything just caught up with me? Does any anyone else feel like this at times?