Hi everyone . I am about to have my last chemo next week . 15 sessions done .
Some great tips here , so I will add some extra ones based on my journey .
Hydrate !.. I drank at least a pint of water before my chemo , 1 pint during , and another when I got home. Being hydrated will help the nurses get to your veins and I’m sure it helped with the sickness too
Aniseed sweeties … these really helped me , but appreciate that not everyone likes The taste
After my first session I had a lot of nausea , bloating , uncomfortable tummy … I struggled to put my finger on what the sensation was … but then realised it was acid indigestion. This was something I hadn’t really experienced before . My Dr prescribed lansoprazole and it was an absolute game changer… every session since has been minimal nausea and tummy ache.
One unexpected and really frustrating side effect was that my thumbprint changed … it’s smooth … it meant that I couldn’t get into my phone apps … as they were all set up with thumb print security access . I also couldn’t remember any of my passwords … so if you are like me and have an old phone and a set up that relies on your thumbprint … jot down the passwords now
The steroids messed with my sleep patterns . 2am awake times are lonely and you can easily start googling … please don’t !!. I have found podcasts to be a life saver . I find that listening to something lighthearted , funny or educational makes me relax and I’m soon back off to sleep
All the very best to those just about to start your journey . You are strong and amazing … you will get through this and it won’t be as bad as you are imagining right now xxx
@mrs_p1 Thank you for all your own personal tips. My wife is making a book with all the top tips. I think the more suggestions the better!
Does anyone have anything they regret doing?
All your input is so appreciated, isn’t this forum so great
2 things that have helped my mental wellbeing through chemo …
When I experience negative side effects … I try and flip it into something positive … ‘ if it’s made my hair fall out , imagine what it’s doing to the cancer’ . If my blood count is falling , it must also be destroying the cancer cells etc . This has really helped me .
Stay away from social media posts about chemo and cancer . I keep reminding myself that these posts are designed to get ‘hits ‘ and if they were showing the good days when you just get on with your life , then they wouldn’t be posted as they are not news worthy .
@indigo2 Cold capping - controversial one this I think, and very individual, but I didnt appreciate the effect it would have on my mental state. In retrospect I do regret it as I found the uncertainty of whether it would work, when would the hair fall out, how much would fall out,should I buy a wig, will the cap be fitted properly etc so anxiety inducing and I could have done without that. Once I started I didn’t feel I should stop. As it was I had quite a big hair loss between the second and third treatment, then low level loss after the third but it all came from the crown which ended up practically bald. At the 4th treatment the nurse wasnt happy to cold cap because of the risk of ice burn and so I stopped, quite happily to be honest as I hadn’t made the decision! I expected it all to be gone with a couple of weeks - it didn’t almost no further hair loss. Eyebrows - half gone, eyelashes 90% gone by the 4th and 5th treatment. 2 weeks after chemo finished the hair started coming out in clumps I’m now 7 weeks post chemo with almost no hair. Probably going to shave it this weekend. The timing is all back the front
I know other people have lost so little with cold capping that no-one notices. It allowed me to hang onto enough for 3 months that I only needed a hair band but the anxiety wasn’t worth it for me.
Consider setting up a group chat for all of your friends and family who will want updates on how you are doing … then you can post once to inform everyone. Otherwise you may get overwhelmed with messages asking how it’s going etc, and the overhead of applying to everyone individually
If you do set up a group chat , I would also be tempted to post something like this …
“I know some of you have asked if you can send flowers , please don’t feel like you need to buy any gifts , but if you insist , then things I would love are …
sun cream for sensitive skin ( name the brand )
shower gel/ moisturiser for sensitive skin ( name the brand )
vouchers for new underwear ( costly when you have to be wearing your ‘best ‘ underwear for all your appointments’
false eyelashes ( name the brand etc )
Etc
Etc
I didn’t do this and received dozens of flower bouquets that I didn’t have enough vases or space for . I also received dozens of little bracelets with inspirational messages like .’courage’ , ‘bravery’ etc … I literally can’t wear them , I have so many
Your loved ones just want to send gifts to let you know that they are thinking of you … help them out by giving them ideas
Pat , many thanks for sharing your difficulties with cold capping. There are many reasons I just wasn’t interested from the start. Mainly because I’d experienced chemo with my mum and I saw she had enough to deal with. She boldly shaved her head the second her hair showed signs of falling out, had no wigs and proceeded to buy a vast collection of headwear to match every outfit!
I have short hair but I can appreciate the angst woman with beautiful long hair that they have grown for years and is part of their identity may have.
I might consider cold therapy to my hands and feet to perhaps try and minimise neuropathy.
All new, all a bit scary.
@mrs_p1
Fantastic advice. I will fully take that on board and say something before hand and get my other half to do the same.
I was considering starting an open just giving page to support local charities throughout my journey, perhaps I can say to give the equivalent on there.
Thank you for highlighting this.
I had similar chemo drugs and was advised to use iced gloves/socks to prevent peripheral neuropathy during the hour long infusions of Placlitaxol. As I was desperate to avoid that side-effect, I invested in some SuzziPad items and took the icepack sections in a freezer bag with me. Wear socks and thin cotton gloves to protect from the extreme cold. For me, it was quite painful but worth every minute as I had no neuropathy and my nails seemed to benefit as no problems with them at all. There’s also some research to suggest that taking a Vit E supplement can help too, so I added that to my regime. My favourite mouthwash was Waken, and the eyedrops Hycosan Extra were a godsend as I had dry eyes most of the time.
Wishing you well with your treatment. There’s definitely no “treat” in it, that’s for sure. Xx
@chatterbox
That’s so positive and great info about your preventative measures. Another couple of items to add to the list and we will try and match them up with other recommendations.
I’m definitely going with the Sussipads.
You may have seen my post about Aveeno on Amazon today, 30-40% discounts, so I had a wee plurge and got a Moogoo one too that was recommended by a woman on TikTok for her sore chemo acne.
Sometimes it’s nice to treat yourself for something, that as you say is certainly not going to be a treat!
Many thanks again
@mrs_p1
I read your other message about turning things into a positive. I’m currently trying very hard to reframe my attitude. I met a woman recently who told me about chemo being ‘liquid sunshine’ healing you for better days ahead. There is a lovely YouTube video about a Canadian couples journey through ’ liquid sunshine’. Despite my free attitude about shaving my hair, I had tears streaming down my face during her hair loss episode.
Time to ‘try’ and get some sleep. I’m a bit of a night owl with night turning into day right now, I reckon I may be in training! Goodnight
@indigo2 Thanks for the Aveeno discount info - stocked up on the face serum - it’s been my go-to during all my treatment.
On other chemo stuff, I got some rashes on my face/neck often in the evenings, and was prescribed antihistamines which helped. Also helped with sleep a bit too as it was Piriton.
This is a great place to get hints and tips. I’ve mainly lurked on the forum for the last 8mths, but your enquiry encouraged me to post. I’ve read too many heartbreaking messages about neuropathy.
Thank you for taking the time to post, I really appreciate it. These forums can be scary, complex and full of unique people with unique illnesses, experiences and attitudes. I also believe some input can improve care and encourage self advocacy.
I try to wade through and find a balance and hope I will in turn be able to give back to BCN members in the future.
Sending love x. This is a tough journey and every feeling is valid . You can’t be positive all the time and there will be times when you want to scream / cry / be angry etc . I am several months into my journey and my mood is now much more positive than it was in the beginning .
I can still remember those first few weeks and it’s ok to struggle , it’s ok to feel low … just know that brighter days are ahead and you will get through this x
Hi
So my appointment went ok. Im looking on the positive side or trying.
Ive been told that i have 3 lumps which i suspected. The original is a grade 3 whichnis between 3 and 4 cm. The other 2 are grade 1 which is good. One is 8mm and the other is 10mm. All of them are HER2 negative with is fab. Plus the Oncotype is 18 out of 100 so very low reoccurrence.
Im having my operation on the 19th December to remove all 3 lumps. The biggest and the 8mm are close together so they will be taking these out together through one incision. I’ll have reconstruction where some fat will be taken just under my chest and put back into the space. The other lump is a straight forward removal.
Also all my lymph nodes will be removed.
In a weird way im looking forward to it as its the start to my recovery.
They aren’t sure if I’ll have chemo, but they think i won’t. The can’t say 100% no until all the biopsy results are back in January.
Anyway sending lots of healing love to you all xx
I am sure you are glad the wait is over - I remember the relief ( I know strange!) that they could do something . Glad you are looking on the positive side I do believe there is a benefit of being positive in even the sh1tti3st of times . Wishing you all the best with your op on the 19th and a speedy recovery from surgery
Hi indigo2
Hi i’m curious why you have chosen not to cold cap, yes it does take longer but it DOES work, if you adhere to the guidance. ie no hot showers or washing you hair in hot water, stick to cool to warm, and before you start find you norm of hair loss, so you no what is excess. You are going into winter and no hair is way more uncomforatable.
Both my sister and i managed perfectly with cold cap, we lost about 50 %, but kept warm head throughout winter. and hey our hair grew back curly and muchj much stronger. I did take in my own conditioner for them to put on under the cold cap and yes the first 10 mins are the worst, but we got through as did many others. We both still have our wigs but never used.
WE took blankets, to keep warm through the process and some treats but didn’t go overboard on too many. I also made sure my meal was ready to go when i got home. I was on doxetaxel. I would say and you are going to hate me, but let your feet get cold throughout the process, peripheral neurotherapy or numb feet is a side effect, and research has now shown the importance of protecting thoses areas. doxetaxel may change your taste, but if you know you liked the flavour before, still eat the same food, and ignore what your body says if its good for you. Your taste will come back. Protect your nails with conditioner and if in UK get the lotion from boots to put on night and day. Pumpkin seeds are high in zinc, add these to your breakfast cereal. I don’t mean to put a dampner on your choice, but Cold Cap does work, and please as you loose some hair don’t be tempted to shave the lot off. I’ve know some ladies regret this. You are a lady and we women are strong, you sill get through this, thousands of others have before you. Go Girl, love and light, Moonsox xxx
Hope you dont mind me asking some questions on your post back to Indigo. Did you paint your nails dark aswell a condition them as I’ve heard this on doxetaxal ? And you mentioned a day and night cream from boots what was this for. I am considering cold capping but I guess it’s each their own on that and I think for some people (as it goes through my head sometimes too) is that it’s just something else to deal with. Did you use any special shampoo and conditioner whilst cold capping ? Thanks
Just thought I’d mention my experience of cold capping. To survive the very cold first 10-15mins or so, I watched Sarah Millican (other comics/humour available!) on YouTube and it really helped take my mind off it, and at times I was laughing out loud. The rest of the time, it was pretty bearable.
I had very long, thick curly hair, and lost quite a lot of it during my Placlitaxol/Carboplatin regime, but still had enough left that noone really noticed. Once on EC, I became bald on my crown and had to tie my remaining hair up to hide it. This helped for a long time, but eventually I did loose almost all of it. I eventually chopped of the remainder of the stragglers just last week.
However, due to continuing with the cold cap, I also had some regrowth at the same time, which has helped no end now I’m 3mths post chemo. I’ve just had my first tidy-up trim with the charity Hair Reborn, and the lady said my speedy growth since chemo will be down to the use of the cold cap. It helps protect the hair follicles so they’re not starting from a damaged point. Check out videos on YouTube by the charity Cancer Hair Care for more info. Or their website www.cancerhaircare.co.uk
I know that everyone’s experience/choice will be very individual, but hope that’s of some help.
@moonsox Just spotted your enquiry re special shampoo/conditioner. My hospital (not NHS) used a lovely conditioner H2K which was fab on my hair when cold capping - I may have to find some for myself, it was so moisturising. Otherwise I just used my usual hair products at home and didn’t find I had any problems with my hair or scalp other than the hair shedding. Very important to comb it out with a wide-toothed comb and lots of conditioner to make sure it doesn’t get matted in. Definitely an issue with curly hair. I guess straighter hair probably doesn’t get stuck when it falls out.
I only washed my hair on the days of treatment when I got home. The steriods gave me just about enough energy and my hair was wet anyway. Tip - take a hat/hair towel/turban for travelling home. I bought myself one with sparkles on it to brighten the end of each session. It made the nurses smile.
almost no further hair loss. Eyebrows - half gone, eyelashes 90% gone by the 4th and 5th treatment. 2 weeks after chemo finished the hair started coming out in clumps 
I’m now 7 weeks post chemo with almost no hair. Probably going to shave it this weekend. The timing is all back the front 
