Needing a friend who understands-Berkshire

Feeling I’m on my own a bit here. 20 months after diagnosis, but undergoing tests. Is there anyone down my neck of the woods feeling the same? I would love to hear from you. I’m 41 with 2 teenage children!
Love Julie

Hi Julie

I’m not in Berkshire. I’m in Wiltshire. But I am 12 months post diagnosis. I’m 47 with a 20 year old and 2 teenagers. What are you undergoing tests for if you don’t mind me asking ? I haven’t gone back to work yet as my treatment only finished in July and I am still suffering side effects from the radiotherapy so I do know what you mean about feeling on your own.

LOL xxx

Hi Cora,
Thanks for your reply. Sorry about your side effects. My problems may relate to rads too but i have to have a scan next week to rule out other possibilities. I had a painful rib. I had a bone scan, ultrasound and X ray which showed nothing. Dr is wondering if anything is hiding under my rib. It is also very swollen! Another wait. A little teaful at the moment, but usually upbeat. I’m a nurse so I guess I know too much!
Reply anytime
love Julie X

Hi Julie

So sorry to hear that you are going through such a bad time. Not knowing is the worst as your mind works overtime. I go over things again and again and still get tearful when I think of everything that has happened to me over the past year. I think it is only natural to fear the worst and I can understand exactly how you feel.

How long do you have to wait until you have a firm diagnosis as to what is causing this ?

I try to put BC in the back of my mind as I am so worried about recurrence but it is difficult.

Sending you lots of positive and healing thoughts.

Love xxx

Hi Julie, Hi Cora,

Sorry you’re waiting on tests Julie, it’s impossible not to worry, but if your scans have shown nothing that’s got to be good. I didn’t suffer too badly with side effects from rads but it seems likely it’s something to do with them doesn’t it?

I am twelve months after diagnosis, finished chemo and rads in July, live in Berkshire and have three children, 9, 11 & 17. Am also trying to get on with getting back to normal and feeling very alone! I think everyone thinks it’s all in the past now and I’m back to how I was pre diagnosis, but I don’t feel like that at all.

Tricky one isn’t it? Trying to move on but feeling so vunerable. Have lost lots of my self confidence.

Love and positive thoughts to you both,

Louisa x

Hi Julie and Louisa

I think what Louisa is saying sounds like sound advice as in all likelyhood your symptoms could probably be related to the rads. I finished rads in July and was in a bit of a state by the end as not only was my front badly burnt , very weepy and raised but it went right through my back and became infected so my GP gave me fucidin cream to clear it up. When these symptoms had subsided my arm seized up and became very painful to move. I saw my Oncologist who said it was definitely the rads causing the problem and to reinstitute my post surgery exercises. I can move my arm quite well but it is still really painful and looks a bit swollen to the side of my chest. I saw my PS last week and he said it is scar tissue caused by the rads and to massage the area but I haven’t noticed any difference.

When I voiced my surprise to my GP that the rads were so strong to go right through me and cause blisters on my back he simply said “look what it did to Hiroshima!”

A woman down my street who has bowel cancer told me that her rads caused so much damage internally that she needed an op to remove part of her bowel damaged by rads.

So rads can cause a lot of damage and severe side effects but I know that you won’t feel reassured until you get to the bottom of this.

I don’t think I will ever be able to move on as BC seems to constantly occupy my mind and the fear of recurrence seems very real to me. I also had a mastectomy and am finding it difficult to come to terms with. My family tell me I am cured and not to think about it any more but I can’t.

Hopefully you won’t have to wait too long for your results.


Hi Cora, hi Louise,
Its so reassuring to know that i’m not alone in feeling the way I do. It’s so hard, trying to be positive with such an unknown future hanging over you. Thanks for the words of encouragement,-I’m hoping that it is the rads.

My scan is on thursday and i have a G.P. friend who will ok up the results for me on friday. 5 days to go!!! Where abouts do you both live? I’m between Reading and basingstoke.

Love to you both!
Julie XXXX

Hi Julie,

Hope your scan goes really well on Thursday, will be thinking of you and sending you loads of positive thoughts! I had my first check up with my onc a few weeks ago and I found that traumatic, I spend so much time trying to put bc out of my mind that any check up/medical appointment sends me back to how I felt when I was first diagnosed - got to keep thinking that every check up, appointment, scan etc is going to help keep you on top of the situation:-)

I live in Reading and had all my treatment locally which was fantastic. Let us know how you get on Thursday,

Lots of love,

Louisa x

Hi Louise
Are you going to the younger womens forum in Reading? You didn’t say your age but your children are fairly young!
Scan tomorrow, this waiting is driving me mad!!!
Thanks for your kind words
Julie XXX

Hi Julie,

Hope today went well. I only just qualify as a younger woman at 45! Wasn’t planning on going to the forum, are you?

Louisa xxx

Hiya Louise,
Yes , I put my application form in the post today. there are still places and you would still qualify!!! Have a think about it, would love you to come!
Love Julie X
P.S. I’m 42 soon,so not that young either!!!

Hi Julie,

Closing date for the forum was today, but they say will put info in post to me today so should be okay. I need to make sure I have someone to do pick up from school and stuff, but hopefully will be able to go.

Hope you’re feeling well, take care,

Louisa x

Thats fab Louisa,
If you can make all the arrangements to come, would you like to meet up in reception at some point? Be nice to have someone I sort of know there!?
I should get my confirmation of booking tomorrow,
love Julie
P.S. The results of my CT scan were good. I have a condition called costochondritis brought on by the rads!!!

Hi Julie,

Really pleased to hear your CT scan went well! Have no idea what costochondritis is but from your tone it’s nothing to worry about:-) Hopefully you can get it sorted out easily now you know what it is.

Have got someone organised to pick up my son from school on Friday so it’s looking good for me to come to the forum. Will send the forms off today and hopefully see you there. I haven’t been to any forums or groups apart from one at the Haven in Fulham when I was halfway through chemo. Am bit nervous to be honest, I seem to spend all my time trying not to think about bc and this brings it all back to the forefront of my mind, but, on the other hand, I know it’s not good to pretend nothing’s happened over the last year. Am hoping to get some advice on how to put some perspective on things.

Cora, how are you? Have you been to any support groups or forums?

Take care,

Lots of love,

Louisa x

Hi Louise
So glad you can come. I’ll post on here a day before the forum! Dont be nervous, it will be good!
Cora you didn’t say where you lived!? are you o.k?
Love Julie

Hi Louisa Hi Julie

I’m really glad that your test results were o.k. Julie. Radiotherapy has a lot to answer for doesn’t it ?

I live just down the M4 a bit from Reading. We passed the Reading junction as we took my eldest back to uni on Sunday and I thought of you both. I’m sure you will have a great time at the forum and meeting each other “in the flesh” will be good too. At least you both sort of know each other which is easier than not knowing anyone at all. I am a bit put off any forums for older women as they all seem a lot older than me and not my cup of tea at all. I turned up at my local breast cancer support group and everyone was substantially older than me (in their 60’s). I wanted to talk to women who had had natural tissue reconstruction as this is the only recon I can have because of the radiotherapy. Everyone at the meeting had either had lumpectomies or implants and the only advice I was given was “don’t do it as it is only vanity”!!! Needless to say I haven’t been back.

My Plastic Surgeon only does the muscle flaps which I don’t really want as I am very active and these can affect quality of life afterwards. But I do have an appointment to see another PS in Norwich who does free flaps which don’t involve muscle so I am really looking forward to this and it is only next week so I don’t have too long to wait.

Is your forum this week end ? I am sure it will be great fun for both of you…bum I wish I was 2 years younger!

Hello all

Just had a read through the discussion and im so relieved to hear that im not the only one going through all this.Ive found it very dificult to find people to talk to as im 33 and most people in my area are alot older.
I was 31 years old and 28 weeks pregnant with my 4th child when i was diagnosed so it was a very scary time. Still is,so its good to hear that im not going crazy and by the sounds of things its reletivley normal under the circumstances!

You all sound like amazing women and i look forward to reading how you are all getting on.
Take Care

Hi Tammy

I cried when I read your post. How dreadful for you to be diagnosed when you were pregnant. How did this affect your treatment ?

I think we are all pretty much in the same boat when it comes to fear of recurrence and it is a difficult balance trying not to let it effect your daily life and that of your family as well. I tend to put on a brave face to my family and friends but inside I feel very differently. I know my life will never be the same again but I am hoping that in time my fears will fade into a distant memory.

Speak soon xxxx

Hi Tammy, Cora,
This site is a godsend. Just to know others are there that knowwhat you’re going through. Cora- too bad you’re not 2 years younger! Tammy- God how awful being diagnosed when pregnant!
Louise, Hope to se you friday- look out for me- i have very noticable red/blond hair!!!How do I recognise you?
Love Julie

Hi All,

Sorry, haven’t had internet connection for two days so couldn’t post.

Julie, am so sorry but can’t make it tomorrow after all, my husband has to go to Italy for the day and won’t be back in time to collect my youngest from school (it’s a car drive away and he has only been there since September and I don’t know anyone well enough to ask for favour). My 17yr old has a rehearsal at college and can’t babysit either, so I’m stuck (isn’t the first time!).

So, am very disappointed but the evening meal is compulsory so I haven’t had any choice but to cancel:-( If you would like to arrange to meet up for social another time let me know, Cora, Tammy, would you be interested? Maybe a lunchtime thing?


Louisa x