September 2023 Chemo Starters

[chanttel77]

Hi thankyou x having support is so important I sometimes feel as if I been negative at home as it constantly on my mind and i also dont want to worry the kids or my partner sometimes i need to talk to people that get it glad I have found this group. Its good to talk xx

[chanttel77]

I hope today goes ok for you also xxx

[Shi]

hang onto each other, and you’ll get each other through day by day, step by step, treatment at a time ask away on here, everyone’s here for you all Sindy have you checked your vision with your rapid response always ring your teams during chemo, it helps them get you safely through, don’t think you are over reacting. your starting to tick them off now keep focused book your look good feel better sessions with your Macmillan’s Shi (BCN Forum Community Champion)

[naughty_boob]

Totally get that you don’t want to worry others. I’ve found friend fall by the wayside since my diagnosis… shows people show their true colours. We are always here to listen to, vent, cry with you, anything you need. We are in this together and together we will be stronger.

PICC line done today, even with local anaesthetic, it was quite uncomfortable, all the pushing and shoving can be felt. Both the ladies were so lovely and needs must. It’s done now. I took paracetamol before as I had read it can help and more when I got home. It’s taken the edge off. They said they’d arrange for district nurse to take bloods weekly and change dressing which will be great, saves the 70 mile round trip. The other hospital is a little nearer, a mere 48 miles round trip, but more country road so takes the same time. I’m actually nearer to Bristol but Welsh GP refer to Welsh hospital, not your nearest.

[Craftyj]

Hi great to read all these threads.
My chemotherapy starts tomorrow at Birmingham QE hospital and I’m so apprehensive
I’ve got Grade 2 hormone receptive cancer, already had a mastectomy and reconstruction but had positive lymph axily tail hence chemotherapy is needed
I had my PICC line inserted on Tuesday, was uncomfortable altho I found the changing of the dressing yesterday just as bad!
I’ve selected a wig at a fabulous place in Bromsgrove
Just wondering if anyone has hints or tips of what to take with me for the chemotherapy to distract me?
Take care all xx

[annemanc]

Hello @Craftyj best of luck for tomorrow. I’ve got my first one this afternoon so can let you know what it’s like.
In terms of distractions, I was thinking of nipping to buy an iPad this morning so I can download and watch a cheesy film during chemo (When Harry met Sally always cheers me up!).
I’ve also packed some ice cubes and a couple of ice lollies in thermos flasks - thought I’d nibble on them to see if they stop me getting mouth ulcers. I read they offer ice to chemo patients in the states during chemo, so thought it was worth a try (and the Christie said it was ok).
Feel daunted too, this wasn’t my plan for 2023! But we will all get through it. Sending you a hug x

[sindy5]

@annemanc @daffodil1 @Craftyj hope all goes well today for you all I will be thinking of you. x

@chanttel77 welcome to the group. I was also very worried and nervous but am trying to stay positive. It’s good to have each other on here to ask questions and air our worries and concerns. Sending my love to you x

@Craftyj I took a book to read but to be honest I didn’t really have time. My medication had to be administered by hand so the nurse was sat with me the whole time chatting. (It was only about 40mins) I had 30 minutes after my pre-meds to wait so read a few pages but then the staff came around with snacks and drinks trolley chatting away. I didn’t do the cold cap which I think you are there for longer if you do. Best of luck. x

[Camy_Radika]

Best of luck, I had my first chemo yesterday in Kilkenny Ireland, I brought a lot of water with me, it is recommended to drink the day before and after, I didn’t put food, I got it from the hospital. book, phone, iPad, diary.

[Camy_Radika]

Hopefully you are doing well.yesterday I had my first chemo AC , I felt light headache and something as a carsickness, couldn’t sleep during the night, morning, fall asleep around midnight and wake up in a hour sweating and bad smell of sweat, but hopefully I will not be badly than now. Headache is still in place and I feel hungover .I had the mastectomy operation lump 5 cm removed and lymph nodes… invasive lobular carcinoma Pr positive Her2 negative. Followed by 4 sessions of Ac and 4 more of P, then radiotherapy and estrogen pills

[Camy_Radika]

I wish you good health and strength to get through it well. I’m glad I found this forum, I’ve been reading for 2 months and found a lot of information. Take care of yourself.

[naughty_boob]

Hi @Camy_Radika

Welcome to the group, a group you don’t want to be in but you will need.

I hope you are ok with your symptoms and taking all the medication as advised. I look forward to getting to know you via this forum. Thanks for the advice on things to take to chemotherapy. I am starting next Thursday and was just thinking what I might need. I’ve opted to try the cold cap and then thought could I wear my headphones if it covers my ears. I am worried about the cold cap apparently the one used is plugged into the wall so you can’t go to the toilet and have to have a commode brought to you, not looking forward to that.

@Craftyj Welcome to the group. I had my PICC line in yesterday, it wasn’t painfree. They numbed the skin but as soon as they started poking and prodding it was quite painful with a lot of pressure. Didn’t sleep well last night, took a sleeping pill but woke up in pain at 3am to add to hot flushes! They didn’t advise any pain relief but I’ve taken paracetamol. It’s nearly 24 hours and the pain has improved at rest but it’s still uncomfortable when I move my arm. They put it in my right as I’m right handed as they want you to use it. The ‘red’ card with side effects does say it can be uncomfortable for a few days. The leaflet they gave didn’t mention that you can’t stretch your arm above your head, there are so many clothes I can’t put on and can’t fully dry myself after a shower. Thinking of you today.

@annemanc @daffodil1 thinking of you both today.

[Camy_Radika]

Thank you dear, yes unfortunately we are in this situation. My nurse told me that the cold cap would not work with my chemo so I give up. I have my room with toilet and mechanical bed with a table so is handy for me. You bring in your bag anything you can use when you go in hospital and don’t forget you personal folder from oncology department, I got one with the blood pressure pack and urine sample that I fill up before chemo.
Good luck with everything.

[Camy_Radika]

I had my picc line one week ago, painful to , couldn’t sleep, I used my daughter squishmallows under the arms and was better, around the 3 day i start to forget till I felt the pain, now after a week I am back to normal.
All my best take day to day

[annemanc]

Hi! Had my first chemo yesterday afternoon, EC. Felt a bit spaced out and queasy this morning, but no so bad. We can do this .

Found I didn’t sleep very well so may ask for some sleeping tabs if it persists. Guessing it’s the steroids. Got my first filgrastim injection this eve.

I did the cold cap and am keen to keep it up if I can. V odd sensation but seemed doable (although the heat outside may have helped)

Hope you’re all holding up ok xxx

[naughty_boob]

Good news @annemanc hope the side effects remain minimal. That’s one done!

Glad the cold cap went well, it’s the bit I’m worried about. So many say it’s so cold and painful for at least for first 10 minutes then you go numb, the other reason is the extra time to have it. I already have to allow an hour each way to travel and have limited help with the dog (he’s 18 months old and a large dog, so need someone who is confident with dogs) who can only be left for 4 hours. We’ll be gone longer than that for 12 weeks and it’s a lot of times to ask for people to help.

[annemanc]

Best of luck @naughty_boob . I was so nervous and feel better now I know the score. The other patients were nice too.

On the cold cap, my main worry was the fitting - the nurses are fab but time stretched, so I read up a bit so I could help ensure it was fitted nice and tight to avoid any gaps. I could understand your reticence on timing, but if you do go for it and want a look I found this 5 min video v helpful from Claire Paxman who invented it, on how to get a good fit: Claire Paxman on Instagram: "Guidance on having your cap fitted for you 💫 In this video I talk through how to achieve the best fitted cap when you are fitting someone's cap for them. You may be a nurse, chemo buddy, friend or loved so here are the most important things to remember; 💫 Always stand in front of the person whose cap you are fitting when putting both the inner and the outer cap on. 💫 Don't pull the cap cover down with both hands when smoothing out the cap cover - you will only move the cap inside. Place one hand on top of the cap and pull with the other free hand. 💫 Remember the chin strap needs to be very tight to start with, but then should be loosened to a comfortable setting before the lacing technique is applied. 💫 Stand behind the patient when applying the ALL IMPORTANT lacing technique. 💫 For people in the US - try and practice as much as you can at home before treatment day. You've got this people! Love and hugs, Claire - Your Big Sister of Cold Cap/Scalp Cooling Treatment xxxx #bigsister #paxmanscalpcooling #scalpcooling #coldcap #coldcapping #paxmancoldcap #chemotherapy #chemotherapysideeffect #chemosideeffects #cancer #cancerpatient #chemo"

It is freezing at the start but you get used to it after 10 mins xxx

[naughty_boob]

Thank you @annemanc i looked at the leaflet from the centre and it mentioned Paxman but nothing else. I’ve watched the video and found their website. I’ve asked a question as well.

[annemanc]

Hope you’re all doing ok. Strange question… has anyone who has started chemo noticed a heightened sense of smell? We popped out for lunch earlier and I could smell the mayonnaise and ketchup on a plate at the next table!

I’ve also noticed a strange chemical smell, initially I wondered if was coming from me (!) but I smelt it on my little girl yesterday too. Am wondering if it’s a temporarily side effect? Not debilitating just odd. On day 3 after first EC. Xxx

[Shi]

quite a few of us from Oct17 chemo gang could Smell like a damp smell around us on fec, don’t know if that helps and yes my sense of smell was heightened during chemo Shi xx (BCN Forum Community Champion)

[annemanc]

Yes @Shi that’s the smell!! Like a teenage boy’s bedding that needs to be changed, or damp. Am going to light a nice scented candle and see if that helps x