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September 2021 Chemotherapy starters

amy46
Member

Re: September 2021 Chemotherapy starters

@Lu_B  Hope they sorted your nausea out now? There are loads of things they can try to get it right for you. Lollies sound good to me!

How are you feeling about your hair? I don’t hate mine just wish it wasn’t so patchy! Not been brave enough to go out without my wig yet though 😳

amy46
Member

Re: September 2021 Chemotherapy starters

I got IV steroids and then oral with the Carboplatin but only IV the Paclitaxol weeks. IV piriton each week too. Then oral anti sickness if required x

amy46
Member

Re: September 2021 Chemotherapy starters

@veestar you will be fine. It’s not as bad as you expect I actually had quite a nice time. The first session is always longer don’t worry. I had an amazing bag of goodies which was a lovely distraction. I’m not working at the moment but a lot of the time I feel pretty much normal. I don’t know if it helps but I started drinking 2.5l water a day from three days before my first chemo. I drink tea and coffee on top. My side effects have been minimal so far apart from hair loss. I also take loratidine antihistamine before my filgrastim injections. Try not to worry as it won’t be as bad as you think xx

veestar
Member

Re: September 2021 Chemotherapy starters

Hi, quick question are the steroids given orally and all the other side effect drugs for chemo? As you can tell I am a newbie!  I haven't had my chemo chat yet from the nurse even though I start on Tuesday.

Veestar.x

Lu_B
Member

Re: September 2021 Chemotherapy starters

Hi, Veestar,

I have had 2 cycles and would not work the day after. In fact, the third and fourth day only worked part time and from home. I get corticoids during chemo and sometimes feel a bit manic but always try and rest to save energy for the next days ahead when finish them and still a bit nauseous.

I am finding difficult to drink lots of water due to nausea in the first week but keep trying juices, ice lollies, any other source of water.

8th after chemo today and feel good since yesterday, working and trying to walk....Sunnis shindig and that helps....

Hair was falling rapidly yesterday and I stopped at the hairdresser and got quick fix shave !

Good luck to you all!

Luciana

veestar
Member

Re: September 2021 Chemotherapy starters

Great tips everyone . Thanks.

I have my first chemo on Tuesday . The chemo nurses said I will be there for 6 hours .. longer than I thought ..!

I have a lady coming over to give me a chemo gift bag . Has anyone else had one ? The make up workshop sounds good too .

Has anyone been to work the day after chemo out of interest? I have taken next weds off but not sure I need to?

louby_lou69
Member

Re: September 2021 Chemotherapy starters

The make up you get is amazing isn't it. I've worn more make up since my cancer diagnosis (& I got my hair cut short) than I've ever done. Chanel foundation, Bobbi Brown lipstick, Clinique moisturiser. I showed my sons girlfriend and she went through it say, this is £30, this would be £20 etc.

My first oncology appointment is a week away now. It's getting closer!!!

amy46
Member

Re: September 2021 Chemotherapy starters

I did the make up one on Monday and I’d also really recommend it! I picked up some great tips and they also send you a lovely goody bag.

How is everyone? It’s been a bit quiet in here, I hope you are all ok? Xx

louby_lou69
Member

Re: September 2021 Chemotherapy starters

Hey ladies I just thought I'd come on and mention that I did a Look Good Feel Better workshop today. It was the Wigs, headwear, brows and lashes one ( I've done the make up and nails ones) and it's in partnership with a cancer hair charity.

It was absolutely brilliant. There were 30 of us on the zoom call so a big group. One lady from the charity demonstrated how to tie scarves and use fringes and clips, she then went on to explain the different types of wigs and how to secure them properly and how to care for them, what products to use to wash them etc.

The third section was about eyelashes and eyebrows and what you can do with those. It lasted 90 minutes and was excellent. 
There is a second workshop that talks about scalp care, hair re-growth etc that I've signed up for in December when I'm a bit further down the line.

Tomorrow I'm going to our local wig salon linked to our hospital and hopefully will find a wig there. I did find one in Manchester but I can't use my NHS voucher there. 
Hope everyone is ok. 
Lou x

amy46
Member

Re: September 2021 Chemotherapy starters

I’ve also struggled a bit with the changing role. I have to keep reminding myself to let others help as it’s all they can do.

So, my update. I feel physically fine after third Paclitaxol on Thursday, but on Friday I noticed my hair was starting to come out a bit. By Saturday morning it had increased and I’d seen a really good YouTube video suggesting using a fine comb and combing through  hair with shampoo or conditioner before going for the shave. Oh my god. Literally half my hair came out. Really quite shocking. I wasn’t exactly upset more fascinated but when I came out of the shower and saw my head I really did look like a cancer patient with the bald patches. Did not like that much. Our neighbour came to cut my hair and was really lovely about it. I went grade 2 as they don’t recommend going really bald. My husband and son kept me smiling throughout and they both actually love it. I don’t hate it although I’d prefer it if it wasn’t so patchy! I do like my wig though so that’s something. Bit nervous about wearing it for the first time today. I did have a really good cry last night when the kids had gone to bed. A pretty emotional day but one more step along the road I guess and at least I know the chemo is doing something.

 

Hope  you are all ok x

aliess
Member

Re: September 2021 Chemotherapy starters

Hi Ladies 

I start chemo on the 17th with Herceptin the day before. I’ve just ordered a wig online so I’ll see when it arrives what it’s like 🤞🏻. My hairdresser works from home at the moment as she had a baby in May and she did a wig trimming course so she can alter it if needs be. It’s the colour I’m worried about as I’m a redhead so trying to get a similar colour from looking on screen is tricky. I’ve always had short hair so that’s not been a problem. 
I told close friends and family after biopsy’s were taken. And then further family once I had a firm diagnosis. I haven’t really bumped into anyone at the shops as yet, so not had any pitying faces or platitudes as yet. My friends and family have been great as has my Hubbie. I think the worse thing is the effect it has on them all, I don’t want to be a source of unhappiness for them. I’ve always been the go to in the family for problems etc, and now I struggle to cope with the changing roles. But I’ve decided to be looked after and cared for as that’s what I really need.

@amy46 good to hear you’re doing well on your chemo, gives us all hope for a smooth ride.

x

louby_lou69
Member

Re: September 2021 Chemotherapy starters

@amy46 

Ive just signed up for the walk 100 miles in October for Breast Cancer Now. Only set it up last night and woke up to over £150 in donations. My chemo won't start for a while yet so I feel able to do this. 

Maybe you could think of doing some sort of fundraiser when you're able to after treatment. 

I think I'll probably be fundraising for cancer charities for the rest of my life.

amy46
Member

Re: September 2021 Chemotherapy starters

@louby_lou69 

I have been thinking about something similar to you in terms of raising awareness. I did regular self checks in the shower but somehow still missed a 3.5 cm lump in a boob that would never be compared to Pamela Anderson’s. I think to do a proper check you need to be semi supine as I realised afterwards I had been pushing the lump out of the way. You also need to stand in front of a mirror to look and raise your arms. I’ve been toying with the idea of writing my story and getting it sent out to everyone who works in my nhs trust. We cover two large hospitals do it would reach a lot of people. I’m just not sure if I feel quite brave enough to do it at the moment. I know I should because one of my kids teachers already checked because of me and found a lump  - luckily benign but even so….

 

In other news, I had my third Paclitaxol on Thursday. Terrible nights sleep which might have been the steroid or possibly the two coffees I had at my late lunch with my husband 😂 

I feel pretty much totally fine except for the fact that my hair started to come out yesterday. I was almost relieved as I have been feeling like perhaps they forgot to put the chemo in the bag 😂😂 at least I know it’s doing something now.

Anyway after my initial relief i now feel a bit sad. I think I might see if I can get rid of it today, not sure I can cope with days of this.

I have been looking at that lovely book about the boy, the mole, the fox and the horse. I thought this quote was a good one for us ‘We have got so far to go, yes but look how far we have come’ Have a good day lovely ladies x

louby_lou69
Member

Re: September 2021 Chemotherapy starters

I've told everyone about my diagnosis. I'm a total open book. I told people the day before my surgery on Facebook what I was in hospital for and that I'd be having further treatment. I gain strength from that really plus I want people to be aware of the signs of cancer.

I thought I was immune to cancer, it something that happens to other people, not me! Obviously I was stupid to think that but if someone now checks their breasts or testicles or whatever because I've been so honest that they can see the signs that would make me so happy. 
Everyone has been amazing and I've had such support and good wishes from everyone. 

I had my hair cut short at the end of July, it was previously a bob. I've got to go and have it cut again as it's grown so fast, plus it could be a month before chemo even starts. I honestly thought that cut in July was my last for a long time. 

Lou x

Magenta59
Member

Re: September 2021 Chemotherapy starters

Hi LuB, and all the brave lasses on this thread,

Glad to hear the 2nd chemo wasn't too awful. My oncologist told me the first 4 days or so might be nasty on Docetaxol, but thought it wouldn't make me too sick! Hoping so too-there is nothing worse than throwing up, and no way I can do it discreetly! I make a dreadful noise! Just trust that the steroids and anti-nausea drugs do the trick. I am wondering when I will be able to get a wig, and maybe will find out at the pre-assessment on Monday. He said my hair will start to fall out in the 2nd week-so quite soon. Good job I nave some headwear organised!

On the subject of telling people-it is very difficult to decide. I have just worked it on a "need to know" basis up until now, as I thought it would be over and done with by Christmas! Boy, was I wrong! So close family and my aunt on Dad's side of the family and her family up North, my business clients, folk at the livery yard where I keep my pony, as I needed help with her care after surgery, and will need it again during chemo for my "off" days, my very close friends who I have known since primary school and who have been the most marvellous support network, and my next door neighbour. Of course at the top of that list my partner who has been a tower of strength, and he informed his close neighbours as clearly they would wonder why I had appeared to have moved in with him while I was recuperating from the surgery. There are a few people who don't yet know, and as chemo draws closer I wonder what to do. Cousins on Mum's side of the family do not know, a few friends I don't see and only converse with on Facebook, and also my step daughter. Thinking from that list she is the only one I may tell, as I may have to avoid visits on birthdays, Christmas etc. No way did I want my ex-husband to know! He has regular contact with my younger son, and I told Adam to keep it secret. I do not need fawning platitudes from someone I no longer respect, and my two other children despise him. It is quite a problem really, and there comes a time when people who don't know start to notice things! The lack of hair being a definite pointer! That can be disguised to an extent, but the other side effects that make us ill will maybe raise questions. I will just play it by ear!

Here's to all of us, and may we get through it without too much trauma! For the ladies with high blood pressure and issues with your ECGs, that must be even harder, an added concern that is clearly affecting your treatment. I do wish you all the best of luck with it and that they can sort these problems out for you as treatment progresses.

With big hugs to you all, Jane.xx

 

aliess
Member

Re: September 2021 Chemotherapy starters

Hope all goes well today @amy46 xx

amy46
Member

Re: September 2021 Chemotherapy starters

Hi @Lu_B 

Thanks for sharing your experience. I feel like I’m getting better at managing other people. My close friends have been amazing and I am so lucky to have a really supportive family. I’ve just had a couple of times when I was knocked off my perch by someone who I had no idea how they knew enquiring about my health. I was feeling more vulnerable at those times though - no plan for chemo start date etc. I feel much stronger mentally now although I am aware that I seem to have put all my anxiety about how I am going to move on with my life after treatment but with the constant threat of recurrence and the worry about follow up appointments etc in a box as all I seem to be able to do at the moment is use my energy to get through the chemo. 
I am also a healthcare professional. It has been both a blessing and a curse. I am not phased by hospitals or operating theatres, drugs, infusions etc. but there have been moments when consultant have been talking to me as a colleague rather than a patient and I have also had some insight into what they say that I would prefer not to have had as it massively increased my anxiety levels. 
It sounds like you are in a really good place mentally. You sound strong on your post. 
I just want to say a massive thank you to all of you ladies on here, I find it unbelievably helpful to be on this forum talking to you all about our experiences. 
Hope you all find a little something that makes you laugh today. 
Amy x

Lu_B
Member

Re: September 2021 Chemotherapy starters

Hi, everyone!

someone asked here: “How are you all managing with telling people? Are you keeping it quiet or letting everyone know? Does it upset you if random people approach you because they’ve heard it on the grapevine?”

My answer: I had my diagnosis end of May,and could not tell my family because at that point I had a brother quite ill with COVID. I also decided to keep it to closer friends initially, as trying to get your head around it whilst dealing with others is difficult. I am a health professional and sometimes people assume that because of that they can say anything and forget that I am now a patient and have feelings. Most people have been really amazing and supportive. I have a few amazing neighbours who have been great as well. I told my daughter’s(10) school teacher and anyone she is cared for and that helps.

I am still working part time and had to discuss with managers and as I interact with colleagues, I am telling them in case a miss an email. I noticed that some people keep a distance and respect that, not everyone cope the same way. 

Last week I cut my hair short and updated my profile online and then new people knew. In a week or two I will loose my hair and then it will be obvious. So... initially you can plan and then it will gradually become apparent anyways. More important for me is to keep people who really care and can support me close by.

No one has approached me out of nothing but I avoid the types who just like a gossip, I suppose.?

There is no easy way to do this. I hope as it becomes more apparent people don’t get too upset if I turn up for an event in my scarf, or looking frail. But cannot protect them all the time!

I hope you all find your way through this. The main thing is to make sure your own mind and body are strong to cope with the disease and the treatment, I suppose. 

Best, Lu_b

 

Tizzy
Member

Re: September 2021 Chemotherapy starters

Hi @louby_lou69 

Yes I found the waiting difficult. I had an additional delay of two weeks, whilst waiting for cardio to get in touch re my echocardiogram, but seeing them next week now, and the oncologist said we'd go ahead without the Trastuzumab. We can add that later if they sort heart/blood pressure issues out - I will need a lot of convincing. Anyway, I was just so relieved to start the actual chemo on Tues. At the moment I am feeling fine, and so I'm trying to just feel positive and focus on other things. A friend gave me some flower crafting kits to keep me occupied, as a change from puzzles, reading and tv. I've even done a bit of exercise today too, so feeling virtuous.

It must feel strange not going into work. I'm lucky I'm retired, and have a lovely husband who's looking after me, but I'm really missing seeing my grandchildren. After all the lock down I was planning to do so much with them and then this all kicked off in June with my lumpectomy on 2 July and although I've seen them a bit, with Covid and everything it's so hard. I just want my cuddles, with my daughter and sons-in-law too. They live so close to me, it's so frustrating. As you say, so many cancelled trips, and I'm not really sure how much socialising we can do due to the increased risk of infection. 

I'm sorry you still have a bit of a wait before your appointment, but at least you're getting prepared - it's all you can do. And then as you say, the sooner we start, the sooner we finish.

Well I better get back to flower making, I promised to send her photos of how I'm getting on!

Take care, Tizzy x

louby_lou69
Member

Re: September 2021 Chemotherapy starters

@Tizzy 

I suffer with high blood pressure too so who knows if that will affect my chemo.

At the moment I'm at home just waiting. I'm nearly 6 weeks post lumpectomy and see my oncologist for my first appointment on the 22/9. I'm a teacher and all of my colleagues went back to school last week. It's so strange not being at work. I just want to get on with the chemo because the sooner it starts the sooner it ends and I'm constantly thinking about it and building myself up to it.

I'm trying to get sorted in the house and garden plus it's keeping me busy. I've cleared out the shed, the garage, been to the charity shop twice with donations and the tip. 
I went to Manchester with my mum last week as there's a wig place that was recommended, tried on a few. I had a bob  but had it cut short at the beginning of August and I really love it short so will probably stick with it after treatment. The wig I really liked was £330!!! My NHS trust gives vouchers for wigs but unfortunately this company can't accept them so I'm going to our local wig place based in the Cancer Centre at Stoke Royal next week who assure me they have an abundance of short wigs. Hopefully I'll get sorted there. 

So it's just a waiting game. I've got a few walks, lunches and events planned over the next couple of weeks. But then who knows.

My partner and I have loads of things booked from beginning of October including theatre, gigs, seeing comedians, many of which have been moved from 2020 so goodness knows if we'll get  to go. 
Lou x

amy46
Member

Re: September 2021 Chemotherapy starters

@Lu_B  You are up early! I am finding I wake early at the moment and as soon as my brain kicks in I have to get up as no chance of more sleep. Chemo day for me today so I guess I’m a little anxious even though I know it’ll be fine.

I did a little training ses