April 2020 Chemo Starters

Hi 

 

This thread is for anyone due to start chemotherapy in April 2020.  I’m sure others will be here soon but please introduce yourself and you can all help one another through this phase of your treatment.  If you have any questions please post away on here and others in the community will watch over you whilst you are getting started.  Once you are into it you’ll be pretty good at helping each other.  You can also ask the nurses on this forum if you have any concerns.  In the meantime, the top tip is always to stay well hydrated throughout chemo, aiming for 2 litres of water per day.

Here is the BCN guide on chemo:

breastcancernow.org/information-support/facing-breast-cancer/going-through-treatment-breast-…

Here’s an excellent article for anyone concerned about hairloss. That’s pretty much everyone starting chemo: pinklotus.com/powerup/breastcancer101/chemo-hair-loss-and-menopause-hair-too/

I finished my chemo over a year ago and doing very well again now.  Here is my story which has some chemo tips on how I coped which were collectively shared from others who had gone through the same from this forum:lifeafterlola.blogspot.com/p/chemotherapy.html

If you decide to set up a private group its good to stay on here also during treatment as I know from experience there are some people who watch but don’t immediately pluck up the courage to join in.  Your conversations can be a real comfort to others.

Best wishes xx

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Hey “Mai7”, 

Thanks for your message I’ve been reading your blog (prior to finding you on here) and it’s been super helpful - thank you. I love that you say that you swear (a lot), just not on your blog :-).  I have a potty mouth too but try really hard not to swear when typing!

I start chemo this Friday 3rd and honestly, I’m absolutely terrified. I sailed through the mastectomy in my usual style with lots of humour, positivity & gratitude. However, when I met the oncologist for chemo conversations (i.e. predict %, choose your chemo during C-virus) I broke down. Then add in the fear about catching the C-virus into the mix…I simply haven’t been able to pull myself together.  I seem to have lost my faith and courage and don’t know how to get it back. 

xoxo

Hi everyone

I’m Joy and am starting chemo on Monday (6th). I was diagnosed with secondary breast cancer (mets in my liver) so they are focusing on just chemo for now with the hope that I’ll be able to have surgery (hopefully a lumpectomy with removal of lymph glands) afterwards. It depends on how I respond to chemo. 

It really hasn’t hit me yet… I’m very good at avoiding things that are difficult to think about. I had a traumatic childhood which has resulted in Complex-PTSD and Dissociative Identity Disorder (DID). I had a panic about starting chemo a few days ago because of the DID, etc, so popped into the day unit when I was there for my MUGA scan. The nurses were so kind and reassuring. They’re putting me in a side room on Monday so my husband can be with me for that first treatment. Such a relief.

Hope you ladies who had chemo yesterday are doing okay.

Joy x

Hi ladies,

I have been reading your thread and thought I’d introduce myself. My name is Naomi, I’m 37 and I have three children (5, 4 and 9 months). I was diagnosed with triple negative grade 3 breast cancer (with lymph node involvement) in March and started my first round of chemo (EC) on 1st April (not such a fun April fools joke!).

I was completely knocked out for a full 6 days post chemo. Luckily the nausea wasn’t as bad as I was expecting but the exhaustion was awful. I literally couldn’t move the entire time and would feel dizzy and faint if I stood up. At the time I thought it would never end but I started to feel better the following week and have been back to my normal self for the past few days.

My oncologist wants to reduce the next dose slightly as she doesn’t want me that knocked out as I need my strength to get through the next 4 months of this, then surgery following that. I have my second round this afternoon, so hoping the symptoms will be slightly better this time :crossed_fingers: . I haven’t experienced any hair loss yet but am fully expecting that to start over the next week or so. I wore a cold cap during my first round and will do again today. Hoping it will help a bit!

Hope you are all well. Thinking of you all. Lots of love xxxx

Thank you. I am due to start next week and it is pretty daunting in this Covid 19 world. They have condensed my treatment so they are 2 week cycles rather than 3 weeks - is anyone else experiencing this? I think it is going to be pretty brutal but at least treatment will be done in 4 months rather than 6 (I am triple negative stage 1 if interested!). It is going to also be tough for the family as we have to completely isolate for 4 months and I am not allowed out of the house!

One thing I am concerned about is getting food! I am now on the vulnerable list but no sign of any supermarkets contacting me and you can’t seem to contact them!!

Hi I’m Fiona (or Fidget, I really don’t mind).

I haven’t started chemo yet, but as they have not been slow about ANY aspect of treatment, I suspect I will be starting next Wednesday, the 29th. I should find out this Thursday when I have my first appt with my oncologist.

I found a lump 7 weeks ago. Since then I have been referred to breast clinic, biopsied, scanned, mammogrammed, diagnosed, had my lumpectomy and path results! I’ve barely caught up with myself…

I had a grade 3 er+ her2+ tumour. 0/2 lymph nodes tested positive. Clear margins around the mass which was good as initially they thought they were going to have to do a mastectomy. 

I’m freaking the hell out about chemo. I’ve had a challenging few years with poor mental health (complex ptsd which comes with poor sleep, anxiety++++, fatigue, way poor self esteem etc). The only thing I feel I’ve had to hold on to is my physical health which has been really good (if you ignore dips in energy). The thought of “giving up” my health, even temporarily makes me want to explode! I feel like I’ve already lost so much that I can’t contemplate or process this reality.

I agree with other comments that the anticipation is probably worse than the thing itself, but I still feel really aggrieved and resentful and angry (even if my mountain lion  isn’t as big or ferocious as other mountain lions!)

Can I ask how much other people are shielding? Are you avoiding all contact with members of your household? Are you prepping your own food/washing everything separately? It seems to me that there needs to be a degree of pragmatism while not being reckless. How do others manage that balance?

Thank you x

Just wanted to have a quick catch-up. It’s been lovely reading the thread and meeting everyone. This is such a good place to get support.

I was admitted in the early hours of last Wed morning with a slightly high temperature. I ended up staying in till Friday having oodles of IV antibiotics as well as injections into my tummy to raise my white cell count which had dropped to 0.04. They put me in a side room and all the staff worked hard to keep me as safe as possible. I did freak a bit on admission because the on-call doctor said I was displaying some symptoms of COVID so I was swabbed for that; thankfully it was negative. But it does play on your mind in the night when you’re on your own… I was so relieved it was all fine in the end.

One thing that is now causing me some anxiety is that my veins which have always been great have now shrunk with the chemo so it was getting more and more difficult to get blood each morning. I don’t want a PICC or Hickman line (makes me shudder) but I am anxious about being constantly prodded with needles in different places on my arms. The phlebotomists were really kind and as gentle as possible and I must say it never hurt but it’s unpleasant and made my palms sweat every time.

I’m now feeling more like myself and have another ten days before going back for the next round, provided my blood count is back up to normal.

I hate cancer and chemo. I hate not being in control of my body. It’s pretty crap isn’t it 

It’s official! I will be an April 2020 starter…sounds like it should be celebrated, and I suppose I am celebrating that isn’t being put off another week! Not sure I could deal with more waiting.

Burst into tears when my nurse took me to show me round the treatment unit…lots of anxiety and sadness and difficulty breathing. I’m terrified, probably more of the unknown than anything. The consultant was really reassuring about side effects etc, but that doesn’t appear to jibe with a lot of people’s experiences on here. Yes, degrees of difficulty, but no one seems to have it as straightforward as the consultant made it sound. To be fair though, at that point my brain was on overload…

I would love to wallow in the futility of “I wish this wasn’t happening” but I know that’s not helpful or realistic. It’s just, you know, sometimes reality bites? And I’ve had a succession of bitey reality in the last few years. I’d be ok with some marshmallow chewy goodness. Hmmm, one metaphor too far, perhaps?! And I have to decide on which hormone treatment to have…

I’m so tired and I haven’t even started yet…??