Please share your chemo experience

Hi Momo and a very warm welcome to the Macmillan Community but sorry to hear about your diagnosis. 

I know from experience having been on my cancer journey for over 25 years with two very rare, hard to treat types of Non Hodgkin’s Lymphomas (one incurable) that navigating this journey can be such a stressful and challenging time but talking with and getting support from people who have walked or are walking the ‘exact same' journey can help a lot.

The Community is actually divided into dedicated Support Groups (Discussion Rooms) so can I recommend that you look to join and put up your own post in our dedicated……..

     Breast cancer

…….. support group. This group is a safe place to talk to others with a similar diagnosis, treatment experience, to ask questions and get support.

To connect in with the group please click on the link above……. then once the group page opens you will see a [Black - Click to Join - Banner] at the bottom of the page, click in this box and this will then confirm that you have joined the group.

You can then introduce yourself to the group by putting up your very own post by clicking [+ Create new post] or [+] in the top right of the group page.

You can copy and paste the text from this post into your new post.

The Macmillan Support Line is open between 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00…… this service provides cancer information, practical information, emotional support, benefits/financial/work guidance or just a listening ear.  

Talking to people ‘face to face’ can be very helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing.

Do get back to me if you need further help navigating the community……. all the very best. 

Hi Momo, 

Sorry for your situation. 

I had 7 rounds of chemo. in 2017/2018. One round was three weeks long and I was only really unwell for about three days out of each three weeks round. Generally, I could not eat much during these days. I bought a load of protein bars and kept them in a jar and a jug of water next to my bed. I was told that I would likely not want to eat the food that had during chemo., after chemo finished - I've found this to be true. I haven't touched a protein bar since so choose your food carefully! I was able to work through the first three rounds and drive an automatic car throughout however, I had Docetaxel in my 4th round and struggled with pain waist down. I also caught a virus as work but this was pre-COVID days and I didn't have face masks. Because of this, I couldn't eat, speak or walk for 9 days and nights however, if I was doing it now, I'd definitely invest in face masks.

Generally, it was hard but do-able. Although I was living with someone at the time, I may as well have been living on my own (we are no longer together). I found that the fatigue is cumulative but you should have monitoring check-ins with your oncologist between doses so that dose adjustments can be made and you can be given steroids and pain medicine. You should also have a nurse specialist for other treatment related support.

Upside - I'd suggest that if you can emotionally surrender to the process and count down the chemos, that will really help. I now have a renewed respect for the human body, especially my own, for doing everything that it could to expel the poison and continue to do that 7 times over. Also, now that I've done chemo. and have had a few years to recover, I feel like I can handle anything else that comes my way. Nothing phases me anymore and I'm up for trying new things.  

I'd say, if you haven't already, let your oncologist or nurse specialist know that you live alone and see what assistance there might with household chores and assistance with your personal care. See if you can have someone come in to help with cleaning your home, particularly towards your last few chemos. Take advantage of online shopping deliveries and if you have a good relationship with your neighbours and friends, let them know your situation and don't feel shy about enlisting their help. My neighbour used to put my rubbish and recycling bins out for me every week through 6 months of chemo.  

If you opt to have a PICC line, you will be asked to attend hospital to have it cleaned regularly so that's more work for you but also more contact with health professionals. 

Chemo. works by poisoning most the fastest growing cells in the body so that's cancer cells and anything else in your body that grows fast, e.g. hair (all hair; not just on your head), nails, gums, etc. It's worth investing in a warm hat for outdoors and a light hat made of natural materials to wear in bed while sleeping. Also, the softest toothbrush you can find (if you have an electric one, ditch it until chemo. is done). My finger and toenails blackened and became fragile but because they are fast growing, they grew back to good health quickly as did my hair which is much straighter than it used to be - something to look forward to. Oh, and chemo. makes you feel hot which is handy in the Winter! 

You'll be advised that if your body temperature increases to above 38 degrees, you should contact the hospital so you may want to keep a digital thermometer and an emergency fund to hand in case you need to take a taxi suddenly (ambulances can take a long time to reach their destination). 

If you have any savings, keep hold of them to help pay bills because sickness benefit only takes you so far. If you don't have savings, you may want to consider/ get advice about how you will manage to pay bills when you need time off work. 

Chemo. appts. can take hours. Check in with your oncology unit reception about hospital transport or free parking arrangements before your first appointment. 

Every cancer and every breast cancer is as different as every person so it's hard to generalise however, I hope that sharing my experience with you provides some reassurance. 

I can't speak to your specific situation but generally, if your oncologist was concerned about the timing of the start of your chemo., you would have started it by now but I completely understand that feeling of anxiety.

Go easy on yourself and hold in mind that you don't have to meet your anyone else's usual pace or standard of doing things. I recall that as a woman in a van beeped at me to get out of her way while I shuffled slowly across a disabled parking bay to get to my car parked in the one of the general spots - because ironically, I was not entitled to a blue badge - I lifted my hat, pointed to my bald head and mouthed 'cancer' to her. She turned ashen, mouthed, 'sorry' and waited patiently for me to shuffle out of her way. Never feel pressured to keep up with everyone else. You have enough to do already. 

Best of luck to you. Stay in touch and let us know how you are getting on, Momo

*Momo= Tibetan dumpling ; ). 

Hi, I’ve just joined this group and thought it might be helpful to share my experience. I’m currently feeling the side effects of my third cycle of cyclophosphamide and docetaxel (TC chemotherapy) for treatment of breast cancer. I had a lumpectomy with sentinel node removal and reconstruction in September with the results showing no lymph node spread and clear margins thankfully! My treatment plan is four cycles of chemotherapy then a short course of radiotherapy and ongoing hormone treatment. 
In answer to your questions, I can only answer from my personal experience. I have had company for most of the time while the effects of the chemotherapy have been at their height, I could have managed on my own if necessary but it was helpful to have someone there. Apart from the hair loss which is traumatic, the most difficult side effect I’ve had to deal with is gastrointestinal colic which is painful and to be honest, best dealt with alone! 
Everyone is different, diagnosis, treatment plan etc., so it’s impossible to compare exactly. If you find you have to be on your own, I advise stocking up with lots of simple medications, e.g. Paracetamol, Buscopan, Rennies, lots of juice as it’s helpful to keep your fluids up and tasty treats as things can taste very different for a while. It might not be easy to go to the shops so plan ahead! 
Take care and all the best with your journey. 

Hi Seven, 

Thank you so much for sharing your experience, they are so useful and encouraging to me. Love it covering lots of details including the energy bar  (read it couple of times and with tears in eyes in the last paragraph...) Really appreciated.  

All the best wishes to you, stay healthy and stay happy. 

* Momo is the name of my dog, in Chinese meaning fluffy :-)

Momo 

Hi Chirs, 

Thank you very much for your sharing and the advice, they are so useful for me practically and mentally.  

All the best wishes to you on the last cycle of chemo and the rest treatments.

Momo

Thank you Mike for the warm welcome, and the information.  Glad I found this group that I can connect with others of similar situation.  

All the best wishes to you. 

Momo

You're welcome, Momo. I like to give details to anyone who asks because the situation is anxiety inducing enough without starting a course of treatment and not knowing what to expect in the way of side effects and how they might impact as well! That said, caveat is that each person is different, each breast cancer is and course of treatment is different.

Tbh, Chir's post reminded me that there is a lot that I have forgotten which feels like a good thing for me but not so great at helping others prepare for chemo. Yes, I also had digestion related issues. I vomited porridge on my second chemo. I'd eaten it just before being hooked up so my body hadn't had time to digest it properly. Couldn't stand the sight or smell of porridge for a good couple of years after chemo. ended. 

For your first chemo., you will also be monitored closely by nurses in case you have an allergic reaction to any of the chemotherapy drugs and you will be given an alarm buzzer to keep near you. I only witnessed one person have a reaction and the nurses responded super quickly and with the utmost professionalism. The person was fine. 

I don't know how old you are. I was 44 years old when I was diagnosed and surrounded by pensioner aged patients who did not have issues like managing work or the impact on fertility and family planning as someone younger might. So, I got put in touch with Breast Cancer Care who ran a weekend retreat for younger women packed full of interesting and relevant workshops. As I was having one of my last doses of chemo. at the time, they were very accommodating of my fatigue and restricted diet. The best bit was making connections with other younger women who were facing similar things as I was and feeling less isolated and alone. I'd recommend that you get in touch with them as, if I remember correctly, they have an online forum. 

I give to water charities now. Having had my body regularly poisoned, I feel an awful lot of empathy for anyone in the world who is forced to drink dirty/ diseased water because there isn't a clean alternative. Funny how things work out. 

All the best to you for the NY, 

Seven

Chirs, just wanted to say that I think that you are amazing. Docetaxel is a b**** and you are having four doses just like I did so I know what that means. I wish you well for your last dose and for recovery from treatment.

I believe that at some point, like me, you will have forgotten a lot of what's happening right now with immediate side-effects although I know that right now it may not feel like this is something that you will ever forget. Once I did chemo and came out the other side with energy returning, hair and nails growing back and, other side effects slowly clearing up, I found that no other life situation fazed me as I became a member of this secret club of badass people who've looked cancer in the eye and said, "Not today, not ever".

In case no one has advised you yet, you may want to invest in a some moisturising skin lotion like Aveeno for radiotherapy. Every Friday, as a reward for getting through a week of radio. I treated myself to a delicious gelato from a lovely establishment that always has queues going out the door along the street. Why not, eh?! ; )

Also, I don't know how old you are and what the impact of hormonal treatment will be for you in terms of peri-menopause and menopause. My breast cancer was HER2-positive so I had biological treatment, not hormonal. If you are younger and no one has advised you or given you resources about this, you may like to enquire of your nurse specialist?

I wish you well going forward.

All the best for the NY, 

Seven

I’m following and loving all your advice 

I start chemo on 8th  January 

Hi, thank you so much, it’s really helpful to hear from someone who has experienced similar albeit everyone and every situation is different it’s good to know you're not alone. 
I’m really not looking forward to the next cycle, this one hasn’t been great but I see it as something I have to go through to survive! Many years ago (36!) I had different chemotherapy so experienced many awful side effects then however, I’m still here causing havoc so I just have to keep going! 
thank you for the tip regarding skincare during radiotherapy, I love ice cream so that sounds like a fabulous plan, thank you. 
I hope you are well and have fully recovered thank you again.