Starting Chemo Soon

Hi

Am sorry to hear that your histology has been not as expected. I can understand that it is a shock to hear that you need chemo. I wasn't expecting mine either. 

Healthy eating and staying hydrated is a good idea. Gentle regular walks may help. 

I did not lose my hair, although I did have some shedding- but I did scalp cooling. My chemo was carboplatin and paclitaxel. If you are not planning on scalp cooling then it may be an idea to look at getting some scarves, hats, looking at wigs. My hospital had a wig lady and a hairdresser come in every Wednesday am and you should be entitled to a voucher towards the cost of a wig. 

Preparing practically can be a plan as well- in the same way as getting ready for the hysterectomy. Things like how you will get to hospital, comfy clothes, food shop, spring clean. 

With chemo it can be hard to know how you will be affected until it starts. I found appetite was affected and also taste. Smaller meals and snacky foods worked best. I found lemon drinks, lemon boiled sweets and ginger biscuits helped. 

For the first week of each cycle I felt roughest and liken it to when you have a virus- aches and pains, fatigue, snoozing on and off, Duvet and sofa. By the second week I would start to feel better, The third week I would start to go out and about. 

Its a good idea to have an accurate thermometer at home as it will be important in checking for the first signs of infection. 

You will have a 24 hour number for your hospital and mine was really helpful if I needed support.

Overall I found chemo was manageable and nothing like I expected. The first session was the worst but once that was done and I knew what would happen each time it felt easier. Any side effects I had seemed to follow the same pattern with each cycle and it can help to fill in your chemo diary as this will help when you have your review. Most side effects could be managed with medications. I did find the fatigue built up with each cycle. 

Jane

Echo everything that Jane has said, including the lemon boiled sweets recommendation. Around day 9 each cycle I realised I wasn’t eating them anymore as yucky taste had gone.

the one thing I regret, if that it the right word, is not contacting the 24 hour line earlier in first cycle. Everybody gets different side effects, and I didn’t call them until day 11, and they were really good re medications to help, including stop taking the anti nausea tablets as they could be causing the stomach issues I was having. For the following cycles I only took the ones they gave me for first 3/4 days and I felt a lot better.

i met some really lovely people in the chemo ward, other patients, their relatives/friends, and lot of helpful advise, encouragement, and found some of them really quite inspiring.

As per always try not to think too far ahead, and you will get through it and out the other side. Xx

Thank you for your practical advice Jane. It is definitely helpful to hear from someone who has experienced it. All I know is what I’ve seen on TV dramas and film - bald people hanging over a toilet vomiting which makes it a daunting prospect to say the least! 
I will stock up on some lemon sherbet’s and ginger biscuits. One of my favourite hot drinks is lemon and ginger tea! I bought a good thermometer during COVID, so that’s good. It’s good to hear about how you felt in between the treatments. I am going to be having the same drugs as you although I realise I may have differing side effects, I hope I will have times when I can go out and socialise. A chemo diary sounds like a very good idea too, thank you for that. 
Not sure about the scalp cooling. Not sure I want the pain discomfort of it, but I still have time to decide and I can always give it a go. I’m more worried about other people’s feelings when they see me without hair / in a scarf as I will then look the part and they won’t be able to avoid it! 

Hi Waidh, thank you for sharing your experiences. I am very very happy about the  24/7 help line and that you recommend getting in touch early. Before my cancer diagnosis I had sepsis earlier this year, which was very scary! The sepsis can attack your organs and so once I was out of hospital I was absolutely paranoid about every ache and pain and honestly kept thinking I was having a heart attack ( I even called my first ever ambulance!). With my new feeling of vulnerability I know I will be thinking the worst re the more dangerous side effects, so knowing I can check it out with somone knowledge and understanding is definitely reassuring. 
it’s also nice to hear that you found people you could connect with at the chemo sessions and I hoe I have a similar experience. 

Its not like it is portrayed on tv and in films. I would have a few days each cycle where I did feel sick and would sometimes be sick but on the whole it could be controlled with meds. With anti nausea meds it is best to take them before the nausea takes hold and along with eating smaller meals etc it can be kept manageable. The lemon and ginger tea will probably help. 

Most ladies on here will have had the paclitaxel and carboplatin. The third week of the cycle I would feel up to going and seeing friends etc. I found meeting up and having a walk outside or sitting outside and having a drink was ok. I felt better in the fresh air and I felt it better to avoid infections. If I planned something one day then I would plan a quiet day the following one. For me it was always the first week of the cycle where I did not feel up to doing anything. 

The chemo diary is something they will likely give you- it has all the information for meds etc and there is spaces to write notes in. 

Scalp cooling is always a personal decision. For me it was the right one. It did feel painful for the first 20 minutes or so and then for me it was bearable. If you do decide to give it ago then it needs to be done from the first session. If you tried it and did not like the sensation then they can stop the machine straight away. My feeling was to try it. I am glad I did as it was one less thing to worry about. 

Chemo did have its hard days but for me it was something that I did cope with. When they tell you all the possible side effects it can feel very scary however most people will only get a few of them and when they do the meds can help.

Jane

Hi TootyFlutey

I had the same chemo as Jane, 6 rounds of, and I pretty much breezed through it. After the first round I got a bit of joint pain in my knees so I rang the 24 hour helpline and they were very helpful. I had a little nausea, and I mean little, but the tablets sorted that. I started losing my hair on day 15 after the first round so had a buzzcut to get it all off.  

Obviously everyone is different but I just thought I'd let you know that it can be OK.  You will be given some steroids to take for a few days after each round to help boost you up and you will have a blood test a few days before each round to make sure all is good to go. 

There are a few foods to avoid such as pate, soft cheese, soft eggs, spicy meals, food that's been kept warm, basically anything that could make you ill if you're already compromised. And stay away from anyone who is ill!. I had to avoid my toddler grandkids quite a bit as they were little snot monsters .

When going in for your treatment take something to do, mine took over 6 hours each time so I took some crochet, a book and I listened to Spotify on my phone. I also took a small desk fan as it was hot in the ward, on the other hand you may want a blanket. 

Best wishes for your treatment. Do let us know how you get on. 

H 

Hi Jane, my apologies for not replying to you before. I have been involved in other family issues (my Mum id about to leave hospital following a 3 month stay and I am trying to help as best I can from afar), plus also trying to prepare myself mentally for the chemo, by seeing friends and family as well as getting out for walks. It is helping. I am trying to keep anxiety at bay by keeping busy, and not thinking about cancer 24/7 -which is hard!

I now have a date for my chemo to start which is a week on Wednesday. It is scary as you say, and there is a sense of a lack of control as really you don't have much choice but to sign the consent form and the side effects are a bit of a lottery. It is good to hear that you and others found them copable with. I have ordered some comfortable clothes an eyebrow pencil and some earbuds and I am trynig to do the things I wont feel like doing by the end of next week.

Thanks again for your support on this forum, Tooty

Hi Sbird,

thank you for your contribution. I am also having the same meds as you and Jane, which seem pretty standard for our type of cancer. I'm hoping they will provide some info on Monday re the food to be avoided and anything else I need to take into account. I already have a long list of side effects -lovely! However, I am reassured by everyone's comments, that I wont get them all and there are things that can be done to ease them. Your comments have made me think about what I will be doing whilst sitting on the ward, as I don't think I will want to read for a solid 3 hours -hence i have bought the earbuds (which i can also use to blot out unwanted noise /conversations).

I'm still not decided on the hair situation. I'm not too bothered about my appearance, but feel that the head coverings are like having cancer tattooed across my forehead and it might be difficult for others especially my 90 year old + parents. Part of me also feels, do I want to add to the pain of it just to save my hair and make others feel better? We shall see...