Can anyone help a new member about to start chemotherapy end of the month with advice about preparing themselves , coping during treatment and any other advice they can share ?

@Newby24 they may not be pretending when they say they love your new look. Like baldness in men, there are some women who absolutely rock it. It depends a bit on the shape of your noggin, but mostly on the shape of your attitude :) MXx

I have had the cold cap for two lots of chemo, the cold was pretty intense for the first ten minutes or so but bearable after that. After the first my hair thinned out quite a lot but is still okay, so far haven’t had much more come out so I will keep going with it for the next two treatments. As others have said it is good to not look sick and have to answer lots of questions. It has helped a lot to come back here to see how others have coped.

I found this earlier post from Janine which may be useful.Chemotherapy - Everyone's Treatment and Side Effects Are Different... Part 1Just about everybody these days knows someone who is undergoing Chemotherapy for some form of cancer, and it amazes me how many of these people suddenly think they are an expert on what you are going through and what side effects you will have.... I'm no expert, I can only tell you what I experienced, but having spoken to other chemo patients, many side effects are similar they just vary in degree. The only person who can determine what type of chemo you have is your Oncologist, and he bases this on your own physiology and the type and severity of cancer that needs to be treated - you can sit in a treatment room with 20 other people and there is a good possibility that there won't be 2 people having exactly the same treatment.Will it hurt???My chemotherapy was intravenous, basically they inserted a needle into a vein and the drugs were dripped into my arm. I'm not a fan of needles, but other than the initial prick of the needle there is no pain, or wasn't for me and nobody else in the chemo treatment room appeared to be in pain either. As the treatment went on it became harder to find a usable vein, but the oncology nurses are experts at finding what they need!My chemotherapy was in two parts - initially I had 4 treatments with 3 weeks between each session, then I had 12 weeks of weekly chemotherapy.For the first 4 I was given the option of staying in hospital overnight on the day of the chemo, I chose to do this as I wasn't sure what to expect, I don't take any medications (don't need any) apart from an occasional headache tablet, so was a little concerned how my body would react. I'm very glad I did, particularly for the first treatment..... Treatment 1... Funnily enough I was actually put into the same room I had occupied after one of my operations so I actually felt right at home. They brought in dinner which I happily ate, I would regret that later, I was hooked up to an intravenous saline drip to re-hydrate and I settled in for the night. I wasn't tired so watched tv for a while, then started to feel a little nauseous from the food. Turned the light off and slept for about an hour or so, then woke with a headache which quickly manifested into a full blown migraine - couldn't stand light, noise, movement, I lay there miserable till the nurse came in and gave me some stronger pain killers. Most people I've spoken to report getting headaches - some of this is probably reaction to the actual chemicals, but it is also from dehydration....So... IMPORTANT POINT 1 - make sure you keep yourself well hydrated before and after your treatment!!!My mum picked me up the next morning and was waiting for me in the coffee shop with a cup of tea and a cream cake - the sight of the cream turned my stomach completely. Other than that I actually felt okay, a little tired maybe. Of course, the oncology nurse and doctor had told me all sorts of things to be aware of and prepared for - I had a list to put on the fridge - what medications to take and when; to rinse my mouth with salt and water several times a day to avoid getting mouth ulcers; to do a crossword or sudoku puzzle to keep my brain active; to watch my temperature, if it rose I was to get to hospital; to expect to have my worst days 3 or 4 days after the treatment; and, of course, to expect my hair to fall out in 10 to 12 days.Well, I have to tell you that for those 3 weeks in between the treatments I didn't have any of those apart from having a couple of days of really bad fatigue - I had a little thinning of my hair but not much, however.....IMPORTANT POINT 2 - get yourself a wig before undergoing your first chemo and get your hair cut short, if you don't want people to notice, get your hair cut in the style of your wig. I didn't suffer too badly with nausea but there were some things that the mere thought of completely turned my stomach: alcohol, and dairy products like milk, yoghurt, cream. Also, I had a horrible metallic taste in my mouth which made everything tasteless, even my favourite Thai Green Curry. I found that the third week just before the next treatment that I could handle a white wine spritzer but I could only cope with a dash of milk in my tea. My hair was below my shoulders and takes forever to grow, but when I started to notice hair starting to come out I bit the bullet and asked my neighbour (who is a hairdresser) to cut my hair short, I figured it would not be such a shock when it really started to come out.Treatment 2The first thing my oncologist said to me is "How come you still have your hair???" It was coming out but although thin was still fine. Now I know other people whose hair has fallen out in exactly 10 days from the first treatment - like I said, everyone reacts differently.When admitted that evening I discovered that I was not on the oncology ward but the surgery ward and that I was sharing a room - the hospital was full! I was a bit concerned for whoever was to share with me as the one thing with being linked up all night to a saline drip is the need to constantly use the bathroom!!! As it turned out it was another breast cancer patient who had undergone her first chemotherapy treatment that day, it worked out really well.... I was able to tell her my experience - which was actually pretty non-eventful, and it relieved some of her worries. Warning her about the headache I had encountered we both took stronger pain killers from the start and had a fairly relaxed, pleasant night. Ten days later, under the shower my hair came out in huge chunks, I stayed patchy for a couple of days and then get the razor out and shaved it - I would suggest shaving it as soon as the big chunks fall out, it's more distressing looking at the parts that are left than a bald scalp, at least it was for me.As the first round of treatments continued I did notice that I would have times where I felt great and energetic, but that I could descend into fatigue very quickly, sometimes it would be something as simple as being out for lunch, and suddenly my body would say enough. IMPORTANT POINT 3 - listen to your body, remember you are putting a whole lot of chemicals in to it, if you are feeling like you have some extra energy enjoy it but don't overdo it, otherwise you'll fall in a heap. After the 4th round of this cycle my oncology nurse called me to see how I was doing....I basically told her that if she wanted me to come back for another one of those that it wasn't going to happen!!! She promised that the second type of chemo was like baby doses.......we'll see.....I'll tell you about that next time!

Thanks ladies, I start my 1st round of chemo on the 21st Jan so this information is very useful. @Romla do you know if there is the second part to the story that she wrote for the second round of chemo. As I'm having 4 x fornightly then 10 x weekly. So would be interested to know how the second round went! I have a question. Re nails. Is it worth trying to protect finger and toe nails with black nail polish? Does it work for some and not for others or does it not work at all?You are all so amazing and the knowledge I have gained from this forum has helped me immensely.I hope you all have a great weekend.

@Shellshocked2018_my anxiety levels are on the rise again and sleep is starting to elude me again as well. Might be time to take a temazepan and get a good night's sleep. I'm really struggling with losing my hair and I'm not sure why as I'm not a vein person. I think it's because I've never had short hair in my life. I'm not sure I'll be able to cope with the cold cap that the prof said I should try as I have good hair😁I'm enjoying time with my hubby as he has been off on leave since my surgery and will be until the 30th January when he starts his new job which will be pretty intense. Much top secret stuff that he won't be able to talk about. I have so many appointments coming up this week my head is spinning and will trying to work in between.Starting to feel sad about about my eldest son flying the coop and moving to Sydney too. Life will be very different, but I'm also so excited for him to start this new chapter in his life.I'm currently trying to find my big girl panties but they are hard to find.I didn't mean to hijack this thread😁Big hugs

Chemotherapy | BCNA Online Network

Zoffiel
Member
7 years ago
@Newby24 they may not be pretending when they say they love your new look. Like baldness in men, there are some women who absolutely rock it. It depends a bit on the shape of your noggin, but mostly on the shape of your attitude :) MXx
Newby24
Member
7 years ago
Thank you everyone for your info on the cold caps, I decided not to go for it and just get the chop. I have some beautiful scarves and beanies been given to me and yes even though not a lot of people know what I’m going through, my immediate family and close friends do know and so they will at least pretend to love my new look haha. I am now going into day 3 of my first cycle and am laying wide awake. Good luck to everyone that is also struggling on this wave of emotions and thank you very much to the women who have been through and continue to support us Newbys 👍🏼💕
CathyMac
Member
7 years ago
@Megs04 I also hijacked this thread as I start chemo on Monday and have found it most informative. I had my education session today at the oncology unit and saw the cold cap in action. I was under the impression the temperature was going to be somewhere between minus 30 or 40 so I was pleasantly surprised to find out it sits at minus 5. I'm going to give it a go but I'm not sure I love the fact that it adds a half hour before chemo starts and an hour after each chemo session finishes. If I can't hack it or don't want to do the extra time for my 14 rounds of chemo, I've decided I'll go to my hairdresser and have a very short haircut. I've been out and bought a few turbans to wear just in case. Funny you say you've developed a needle phobia as all the needles of recent times seems to have cured my needle phobia.
Sister
Member
7 years ago
If you haven't been offered them then it's likely that they're not available at your clinic but give them a call and ask - nothing ventured, nothing gained. As @sarnicad says, they add a significant amount of time to your treatment and you may have to have chemo in a different area of the clinic. My clinic had a large chemo room but if you were doing cold caps, it had to be done in the hospital next door. All still under the care of the clinic - they just didn't have room for the equipment.
Sarnicad
Member
7 years ago
@Newby24 the cold cap adds about an hour and a half to treatment time. An hour at the front end and half an hour at the back end
kmakm
Member
7 years ago
@Newby24 A cold cap is a specific piece of equipment attached to a machine in the chemo ward. Some places don't have them. Some people have great success with them (@kezmusc is the poster child for that) while others, like @Sister and myself, tried it but found it didn't work well enough to persist. You can talk to your oncologist about it. It's initially very uncomfortable but then just numb. It adds a lot of time to your stay in the chemo ward.

You might surprise yourself. I love my new short do and am keeping it! K xox
CathyMac
Member
7 years ago
@Newby24 the cold caps are available through the oncology centre that I will going to here in Canberra. I know how you are feeling with the hair. I've also never had short hair and I'm pretty sure that's because I don't look good with short hair.
Best of luck with the chemo. What is your treatment plan?
Newby24
Member
7 years ago
Where do you get the cold caps from? Do you buy them yourself? I start Chemo in two days n was going to do the big cut tomorrow. My hair is long but very weather worn so was thinking maybe a short hair cut anyway. Never had short hair in my life so bit apprehensive 😬
Sarnicad
Member
7 years ago
@CathyMac @Shellshocked2018_ it is so true that everyone does chemo differently. For me everyone warmed me of constipation - not a day but I took handfuls of gastro stop and indigestion meds. Just have the drugs on hand and don’t hesitate to ring your onc or the nurses or whoever they give you to contact(make sure you have a number!) if you are in doubt about anything

on the cold cap I’m in the give it a go camp. I was given a sedative and it was only intense for about 5 to 10 minutes I think the first time was the worst as I was so stressed by the whole unknown chemo thing that I made it worse the next three times were probably only 5 mins. I had some thinning but most of my hair stayed and it has bounced back quickly
kmakm
Member
7 years ago
@Romla I do know her, but I Googled to check the likeness. I kind of know what you mean, but I think you're being very generous! Thank you. :*