**APRIL & MAY 2021 BREAST CANCER CHEMO**

Hi Gwennie

i am sincerely sorry that you have had a rough time, please try and stay strong. My lumpectomy was end of Jan and the same as you triple negative and healthy beforehand.  3 x EC (have 3rd this Frday) and then in 3 weeks move onto 9 x weekly of Paclitaxel and Carboplatin.  My side effects have been minimal compared to yourself and others but I dislike feeling tired as I was so active before.  Before Chemotherapy I wanted to run away and still would like to but it would probably be just a stroll as not got the energy to run. You have come this far and I hope you are over the worst, please don’t quit the treatment.  Just keep telling yourself that the baddies have got to be flushed out. We all want this journey to end and it will. Thinking of everyone and sending positive vibes x

thank you Panagia.  I know it sounds a bit woosy of me to consider stopping after four accelerated EC and not give the Paclitaxel a chance and i have tried to look at it a bit differently.  My feelings are that I am depriving myself of lots of things I like and enjoy, including good health for a potential 7% additional benefit of cancer not recurring over the next 5 years. So from a maths  perspective 7% of five years, based on five years exactly, is 127 days, or four months.  My total treatment would be some 22 weeks or  four months.  So no nett gain! I know this is not necessarily the way to view this as five years is the minimum and up to ten years is the optimum but that  is how I am trying to rationalise this.  So next stop after this weeks last EC is big question and answer consultation with the Oncologist.  I had one call from my BCN at the very beginning of this process and I have called her twice.  Apart from that I have never heard from her , so it has been hard to see positives with only the chemo ward or two weekly phone calls with Oncology to support me from a medical perspective, and visits to A&E when i get infections,  I don’t think they could have made the process easier, But it all builds a picture of how the next ten weeks will be.  I will hang on for at least another two weeks mulling this all over.  Gwennie

I totally hear you Gwennie,

I am really struggling today. I’ve just been for my Echo and the sonography said he couldn’t get good pictures so likely another appointment. 120 miles when you feel rough is rubbish.

Im now nearly four weeks out from my first EC, my second has been delayed because of my low blood count and I still feel rubbish. I’m tired, wobbly, dizzy, my teeth hurt, my gums are bleeding, I have headaches and my stomach isn’t right. I honestly don’t know how to face everything that’s ahead. I haven’t been given any percentages or been offered a CT scan / MRI and have no idea about spread or what I’m actually dealing with, just that I have to have this chemo and then surgery when maybe I’ll find out more. 

Ive had one appointment with my oncologist and have no way of contacting her and no idea how to make an appointment. The chemo ward are good but don’t seem to be linked up with oncology. I haven’t heard from my BCN since diagnosis although I have had a call from a local support person, but she’s just sent me loads of links by email that need to be followed up and I don’t have the energy. 

I feel totally lost and useless and I don’t want to do this. I know lots of you ladies are doing really well, and I’m so glad you are but I just feel like I’m not coping and don’t know what to do. 

Ruby xx

Ruby my heart bleeds for you. At least I do have a good chemo team and phone them when I just don’t know what to do.  I think you maybe struggling more than me as at least I had lots of information up front, because my lump and lymph nodes were removed before all of this.  The overriding thing that was really driven home to me was that it is all my choice, however the EC gives me the best opportunities which is why I am sticking that out!  In my oncologists words the Paclitaxel is like the icing on the cake.  

You can phone your Oncology team if you have the letters you have received with their contact details  and ask for a telephone  consultation so that you can be listened to and get some answers, and guidance.. How often do you go to the chemo ward? I go twice a week on treatment weeks and once a week on the week in between, because my chest has been quite bad and my sats and BP have gone down steadily throughout, so they do keep an eye on me, even though they are not around on the days I can’t even be bothered to get dressed

I am way down in the sunny south and probably miles away from you but will help you as much as i can as at least I am almost finishing my EC which is where I felt I needed to be.

This is my new kitten which I bought to help me and keep me company, Who or what do you have? 

Hi Gwennie,

I haven’t had any letters from doctors or oncologist yet. I was diagnosed on 26th Feb so thought I might have heard something by now. Going to make some phone calls tomorrow. I also have bloods again tomorrow so I can talk to the chemo team and ask for some help. I’m going to ask about reducing the dose too.

Thanks for replying. I have my husband who is trying but mostly burying his head in the sand and trying to carry on as normal. Also two kids, my daughter is 16 and my son is 13. They are coping reasonably ok but I am still their main support and I’m finding it hard to be emotionally strong for them. I have two cats too.

I only go to the chemo ward at two points during my three week cycle, bloods and then two days late the chemo depending on results. Will see what tomorrow brings. You’ve had a rough time of it too, I hope you can get to the end of EC and then work out what’s best.

Ruby xx

Hi  so sorry you’re feeling overwhelmed and not able to cope with facing chemo, which hospital are you going to for treatment. I’m in Scotland too, is Glasgow your nearest big town? 
Covid has a lot to answer for as services seem less ‘joined up’ than before. 

It is an emotional rollercoaster being diagnosed with breast cancer and so hard when they can’t always give you definite info until after surgery and pathology results are back. Tests, scans and biopsies are great and give them lots of info on treatment indicated though and our teams meet up to discuss what’s best for us individually.  As far as I’m aware the go to protocol for HER2+ cancers is chemo and Herceptin though I’m not getting Herceptin due to my risk outweighing the benefits. They generally don’t give Herceptin without chemo as all trials were based on that plan. The outcomes after this treatment are very positive. I didn’t ask for a  % survival as I believe I’m not a statistic but a unique person, many friends are 10-20yr survivors and although I never EVER wanted to go down the chemo route I have (albeit reluctantly when SE are at worst) accepted it’s my best chance of a longer term survival. I’ve only seen my oncologist once in January when I started chemo but do have another appointment before #5. Apart from that I don’t really see anyone between chemo except to get bloods done or go to hospital to get checked out. SE are not pleasant, some are worse than others,  though once I sorted out the constipation I felt more in control of something.
Some days I really struggle and other days I feel I can do this. Have you been given meds to deal with mouth/gum issues? It must be really hard with younger kids, do you get enough rest/sleep? Anything I can do to help please ask! 
Please, please email or phone someone on your hospital letters, tell them you feel unsupported, our teams do want to be there for us I believe, it’s just not as easy as before social distancing etc when it was all in one place/building. 
I wish we could meet up and be more supportive of each other in person, sending you a huge virtual hug 

denise x

Hi! I suffered really badly from constipation after my first FEC treatment and my GP prescribed Movicol. I take 4 sachets a day the day of treatment and the next 3 days while on the anti-nausea drugs...this worked the second treatment. Might be worth considering?

Thanks Denise,

Im going to make some calls tomorrow and also speak to the chemo nurses at my appointment, hopefully that will help ease my mind and answer some questions. 

I’m going to Fort William for my chemo, which is only about 30mins away, but for most other things I have to go to Inverness which is a 90min drive each way. When I change to Herceptin I’ll be having the treatment over two days the first time, one day in Fort William and the next in Inverness. However, for now I have to focus on getting through the EC. 

I know I’m on the tried and tested treatment plan, and there’s some comfort in that. Right now I can’t shake the feeling that the cancer is way more advanced and spread and I feel I really need to get my head into a better place if I can, and maybe a scan would help. 

Thanks for replying, it does help just to be able to say how things are.

Ruby xx

Hi everyone, I know some of you lovely ladies have a picc line. How easy is it to look after? I’ve managed so far without one and am now 11 days in my 3rd cycle. I’ve had nerve damage from an attempt at putting an IV in which is causing me a lot of pain in my hand and wrist and means they have a limited side of my hand to use. They mentioned having a picc line but I’m afraid of infection and catching it etc. Also bathing with it. My poor arm/hand has taken a battering and they won’t use my right arm as that’s where my lymphnodes where removed. Any advice would be greatly appreciated! X

Hello Neenie, personally i much prefer having the picc line. Like you, i have always had painful bad experiences with the hand cannulas that my wrist was swollen and painful i refused to let them use it. In comparison most of the time I dont know the picc line is there, my daughter who is vet nurse, has been shown how to change picc dressing and flush it so i dont have to go to hospital to get it changed. So far it hasnt leaked, or caused any problems and is so much easier having chemo put in. I am going to check whether it will be needed for my MX because i would rather keep that in for an extra 6 weeks than have to deal with a cannulas.  It took about an hour for it to be fitted and it was painless for me. Only thing is you have to wear a limb bag (get them off amazon/ebay) over the picc site to keep it dry. Good luck with whatever you decide to do x