Hello Susannah,

same as Texasgirl, I am so sorry you need to be here too. I did something similar to you and I read all the post, not really commenting on anything. I was a bit of a lurker, but the group helped me so much. I go so many tips, but the main one was the use of Epsom salts. I had a small bath everyday after radiotherapy and it really helped me.  

My story is slighting different to Texasgirl. I was diagnosed in May 2019, stage 3, I had chemo and radiotherapy for 51/2 weeks. Those days were just a blur, I had to have a driver put in as the treatment was making me constantly sick. They also used it at a later date to put morphine in. The treatment didn't get rid of the cancer, so I have quite extensive surgery (81/2 hours) in Jan 2020, which removed everything!!!! (VRAM and flap it's called). I also have a permanent colostomy. 

I have scans every 3 months (mri or CT) and so far so good!!! I still have some pain due to scar tissue, but plastics consultant is trying to sort this out.  I still get anxious about the scans, but that is partly my own fault as I don't let anyone know when they happen only the results.

to keep my mind occupied,  I went away twice - UK hols and prep for Christmas, I started swimming in sea ( only live 20 mins from some awesome beaches) when my surgery scars healed.  I have two amazing girls 4 and 10. I try to keep focussed on them, they also keep me busy.

I was told at first it had cleared, but after bisopy I needed the further surgery.  To manage the bad times, when I was on my own I allowed myself to cry, get angry and tell myself this is *** and not fair!!  Then I would take a deep breath and move on. I am comfort eater!! So have gained soooo much weight, but have  joined a slimming club to sort this out.

I will keep an eye out for your posts cxx

sending hugs xxx

I'm so saddened to hear this, Sunnyshine, but so glad you are doing better now.  

Big hug,

Sheri aka Texas Girl

Hi

wow! It brings it all back reading your post. My heart goes out to you because I know how scary it feels. Keep going, don’t stop and try to keep yourself busy are my ongoing goals. I never stopped work going through the treatment because for me it kept me busy and stopped me googling! The group that we formed was so comforting when you feel at the time you are the only person going through it. You aren’t though! There are people going through the same or similar who are feeling equally worried but there is light at the end of the tunnel...my diagnoses was early 2018...straight after Christmas! Treatment started feb TIL end of March and innocently I didn’t think of the treatment not working because I was comforted by the oncologists and cancer specialist and all the regular checks. I once asked the question “what if?” and their answer was let’s focus on the now! So I did....I have to say I have no side effects, eat the same food, do the same things and have no restrictions to my life that was before the big C. To be honest between this group and me the only thing I find has changed is the amount of wind I’ve accumulated! I guess this is the treatment...   If this is all I have to contend with I feel very lucky. When I mentioned it to my specialist all she said was “well you didn’t clear the waiting room did you?” So her upbeat reaction soon stopped me from feeling it wasn’t normal... if you have any concerns or feel worried at all and need someone to smooth over the concerns don’t hesitate to ask....by the way my tumour was 6.5 cm and I had 3 lymph nodes effected...so things were not good at the time of diagnoses...wishing you well in the coming months and hoping that it shows the treatment is a success...I will be thinking of you ...forever in my thoughts..Mandy xx

Hi All

Well that was a surprise getting email notifications that someone was in the chat group - it seems so long since I've been on here.

Susannah I'm glad you found this group and hope that you will get some comfort from it.
I was diagnosed Aug 2017 and had six weeks chemo/radiation I'll not lis fit me it was tough and one of the hardest things was the tiredness. Unfortunately my skin broke out quite badly but with the help of my amazing specialist nurse I got through it.

You mention about after treatment and I did find that quite tough after six weeks of a "routine" I did feel a bit abandoned and in my own. Ftudbds and family were amazing and gradually I got back to a new duty of normal. 
I don't know where you live or are getting treatment I'm in Glasgow and started going to The Maggies at Gartnavel it was amazing they run various courses and classes and have wonderful staff to help you with well almost anything. I now do some  fundraising for them and still pop in for a cuppa it's a special place . If you've got a centre near you I'd certainly consider a wee visit. 

Im now nearly four years post treatment like Mandy suffer from terrible wind but a small price to pay. I had a CT couple of weeks ago and getting results next week so hopefully I'll get signed off then. 
It's been  good to read some of the others updates as this chat was a total godsend.

I will be thinking of you and if you so have any questions no matter what - someone in here will usually face Xbox answer.

take care Sands x

Well hello everybody!

Lovely to hear from you all and lovely to hear everyone so far is still ok.

I too found our little group a godsend, I was so frightened to begin with, you girls got me thru and I still think of you all constantly xx 

I too girls suffer badly with wind, but most people around me know that now, so I try to ignore it lol. The only other side effect for me is when I need the loo I have to get there pronto, I can't hang on for too long like I used to, but having said that I am getting older now and those thing affect us ladies anyway... I'm retiring in October I'll be 67.

It's been just over 3 years since my treatment finished, and although it was a horrible treatment to go thru I do have fond memories of the boys and girls that looked after me and I'll always be grateful.

Look after yourselves everyone and if anyone wants or needs help and advice do not hesitate to ask.

Love sue xx

Hello Texas Girl Aka Sheri

wonderful news in the biggest way that you are 4 years in withour recurrance, that is great. I read that recurrence occurs mainly within 2 years and slides off after that, so that is really encouraging to hear for me at this stage. 

That was one of the really encouraging things when I was reading - that so many of you (with some damage or windyness!) have managed to move through and past this cancer, it has really lifted my spirits than you. 

My nutritionist advises Penny Brohn, which is a UK cancer charity about living well with cancer, which looks at integrative cancer support, and I got her name from one of their doctors. (the doctor's quote was, 'if I had cancer I would work with her', which was good enough for me!) She produced a really good report and guideline for me - I wonder if this might be another avenue for you to possibly see if it might assist with your problems with eating and weight, which sounds life dampening, 

Thank you thank you for this group. For the firt time in 3 weeks I slept well 2 nights ago and felt comforted - partly by matching my experience to yours, and also tbh the wonderful news that so many of you are on the side of this cancer.

Susannah

HI Mandy

If you don't mind me saying, your posts gave me a lot of hope - you know normally size is compared in whose is bigger, well you being Stage 3, 6.5 cm with 3 lymph nodes and coming out the other end fighting fit if a bit windy, you practically speaking gave me such hope, given yours is bigger than mine - I am original tumoue 1.6cm  and 2 local lymph nodes.

Now I know it does not always work like that, but as I read over those two nights the thread and realised that you came out the other end, what a comfort. 

And congratulations to you! 

Wonderful to hear there are no restiriction on your life, and wonderful to see you resume life with verve.

May it always be that way!

Susannah

HI Sands, 

4 years post treatment - fab. OK finges crossed for the scan result keeping it happily that way.

On my reading so far it seems the majority recurr within 2 years, so even tho they keep checking on us for 5 years, the conversation I had with the oncologist seemed to suggest that that titbit of info I had picked up seemed right - that the first 2 years are crucial to get past. 

And did you see that women have about a 10% better survival rate than men on this particular cancer, which is odd, don't know why, but currently (and always) v glad I am a woman!

Thank you for your suggestion on Maggies It made me look up Maggies. I am in Bristol closest one is Cardiff, or Cheltenham, but you make them sound lovely. 

I saw you did a meonpausal course with them post treatment and a feel better type course, which made me think that's a good idea.

I am also being supported with Penny Brohn a charity supporting alternative treatment as well as NHS - mindfulness, food, exercise and the like, all on zoom at the mo, but your comment made the think they probably will both be opening up soon. 

I am finding the menopause coming in thick and fast - 7=9 waking up at night with flushes, I suspect due to treatment, which does not make me the least grumpy person in the day after 3 weeks of it (beyond grumpy after 3 weeks, thank goodness for finding this group and feeling less anxious and more able to sleep as a result, last two days have been positively cheery in comparison!).

I will reach out to Maggies and also see if Penny Brohn is now physcially open, and see what post treatment support / course are helpful, I liked the suggestion of the ones you did. 

Good to know you felta similar way - we are not going mad then, just part of it. 

Thank you for replying. I did love your photo of you on the beach in Portugal!!!!!

Susannah

Sue

3 years since treatment finished. Brilliant. So glad for you. And to be honest, quite inspuring and motivating and hopeful for me, reading this. 

I think you said yours was agressive - poorly differentiated, The biopsy of mine was also poorly differentiated, so whilst I know everyone is different like you that is one of my fears - Grade 3 cell changes, so they are changing faster, so to hear that you are happily past the three year stage (when the reading I have done suggests that were it to come back it likely comes back within 2 years in the main) is wonderful to hear - mainly for you, but also as a comfort for me.

Onwards and hope you enjoy evey minute of your retirement. 

Thank you for your kindness in replying. 

Susannah