anyone starting on similar journey ?

Good morning,

I’m feeling for you as I can see you are in a tough place - and of course all of us on this forum have been there. I have a PICC line where my chemo goes in - better than wrecking your veins in my experience. I have had no problems with it. I have had 6 rounds of chemo - 3 to go and largely not really had too many side effects - mostly just tired. Everyone is different as you will have read but try and not dread side effects that may not come, or may not come as bad as you imagine. That mental torture is debilitating and will rob you off your strength.

You can do this and you will do it. Because of my faulty gene profile i also will have to have a double mastectomy if i want to reduce my risk of reoccurrence . It’s stark i know, but i see it as being given protective options to preserve my life - in that sense it’s a bit of a gift. It’s a big reframe i know, but it’s the only way i can do this and stay sane.

There is no useless at yoga - it’s about the process and tuning in to your body. I wonder if you can find a gentle class nearby? I’m a yoga teacher myself so a very big advocate for it’s benefits of moving the body and soothing the mind.

In the early days of diagnosis i too struggled terribly with sleep - all those thoughts and anxieties spinning like crazy. I downloaded the CALM app on my phone and really indulged in a sleep meditation on there by someone called Mel Mah. I would put it on when i woke - give myself over to it and was always asleep before it ended. It focussed my mind in the a more positive direction and calmed my body down from its manic desire to race at a million miles an hour. Your nervous system is understandably agitated and needs soothing.

Try not to think ahead too much - each day a step at a time and it will feel less overwhelming.

You have got this,

Jan x

Hi Jan,

thank you for your message, i cant tell you just how reassuring it feels, just what i need right now. 

i am hoping that when my treatment starts and i get in a routine i will settle to doing my yoga and meditation more, i had to watch a video and then a chemo nurse rang me yesterday, she soothed me a lot but i was overwhelmed with all the information, i have got to have chemo on a weekly basis two hours first then two weeks of one hour, then starts again, i will also have immune therapy ? 

i am going to down load the calm app i think and give it a go, i had been prescribed sleeping tablets to help me sleep and i am very cautious with them, i hadn't had one for a week and a half and was feeling increasingly drained, the nurse said to me yesterday to take my sleeping tablets if i needed them,  and to stop putting myslef through that.i am very sensible with them but for me its just having something to fall back on.

i love listening to sound baths with singing bowls i find them very comforting and relaxing.

today im having my picc line put in and then all systems go tomorow 

thank you again for the message really has calmed me down

xx

I love sound baths too - have been to a few sessions during my treatment and found them really ‘settling’. Would be good perhaps to look up some classes near you? Also I was wondering if you have a Maggies centre attached to your hospital? We do in Leeds and it’s a great source of support although I know its a bit of a post code lottery.

You will feel better once your treatment starts - you will feel like you are doing something. Make sure you drink plenty plenty plenty of water to flush out the toxins (note the word plenty). Rest as much as you need - and just be incredibly kind to yourself. This is described as a rollercoaster for a reason - it’s full of up’s and down’s but if you can learn to ride the waves (and you can), you will find periods of peace. Once I accepted I couldn’t change my cancer diagnosis - only my response to it, I found I could breathe again. X x

Check out the ModiFY trial. It's a basket trial for a vaccine that targets TNBC, Ovarian, Head and Neck and Renal Cancer. It  has seen some promising early results. 

Hi I have found the Maggies Centre very helpful too. I do an on-line yoga class which covers all of London.  The really helpful thing is that it can be done from home.  I couldn't get to my physical centre at Bart's hospital and so the on-line session suits me.  Specific issues from treatment are taken into consideration. Some people do it sitting in a chair.

All the very best and hope to here how you get on

It’s a very small scale trial in its current phase. Check out Mmum ‘s recent blog entry on it - she is in the trial. 

Hi

I have also been diagnosed with triple negative breast cancer which has made me very anxious as I feel I have been left to find out everything for myself. 

I have already had an operation to remove the tumour and the lymph node which was clear. Even though the cancer has been found at an early stage the diagnosis of triple negative still installs very real anxieties. 

I have also had a a PICC line fitted which I feel is the best choice to save my veins with the treatment plan of 8 rounds of chemo and radiotherapy after that.  I initially thought this excessive but then I came round to thinking that, throw everything at it and win the fight. 

My first treatment was on Friday and I was very anxious but once I got started and talking to others having treatment I felt more positive and on track to count down the treatments. I have taken the advice given by Jan to drink plenty, plenty, plenty of water and take the meds and I have had little side effects. I hope this continues. 

Thank you Jan for you advice on yoga and CALM and I will certainly be looking into yoga groups in my area. Exercise and walking is imperative to my wellbeing and positive thoughts.

Stay positive x

Hello,    Danuta I am  wew here  and I hoping  to feel supported and feel I am not alone. I was Diagnosed with Triple negaive Breast Cancer, I declined the six months Chemo up front and requested they remove the lump , this was done and was sussessful .I saw my Oncologist yesterday who wants me to have  3 months Chemo on a 3 weekly Cycle, As it was an aggressive C and to prevent the risks again and to kill out any possible risk that it is elsewhere in my body.  I am terrified I have all paperwork here and to scared to email and agree a date to start. I live alone with a young dog, I have little support as no family or free friends close by... I am a type 2 Diabetic and have high BP .. so further risks. Any one else with Type 2 and gone through Chemo ?   I did not sleep last night for thinking about this and felt so very alone.

. 

Hi Polly55

Welcome to the forum and sorry to hear that you have been diagnosed with triple negative breast cancer. While the prospect of chemo is frightening is not as bad as it’s made out to be it’s not too bad. I won’t say it’s easy but it is doable.

When deciding on what kind of treatment to give you your oncologist would have taken into account your other health issues.  Might I suggest that you call your oncology nurse or your BCN and discuss your concerns with them. Alternatively you could ring the Macmillan helpline on 0808 808 00 00 and talk to the person on the end of the line about your concerns and they be able to give help and advice.

Wishing you the best of luck whatever you decide to do.

Best wishes

Daisy53

Thank you Daisy