Hi Chris631 and Lou604,
im from the June chemo monthly thread and just want to say good luck with starting your chemo treatments 💖
i finished mine .... yay..... just over 2 months ago now so if you want to ask anything please do. Mini mad xx 💖💖
I've not posted for a while, but still been reading (and hugging ), it's great to read all the tips and info coming though and to see the different ways of coping with the myriad of side effects! I am already in awe of you all
I went to the meeting at the Chemo Suite yesterday with my 13 yr old son, it definitely helps to see the surroundings etc before I go in for my first treatment which is this Thursday 14th. I go from being nervous to calm to weepy to joking all within the space of a few minutes - the poor loves around me that have to deal with that!
I don't think I'm doing the cold cap but may change my mind when I get there. I've a list of supplements etc the nurse asked me to bring along on Thursday and Pharmacy will check the out against my prescriptions. I've my second acupuncture sessions this week and I moving towards a practically complete plant based diet - has anyone seen The Game Changers on Netflix?
My mum is coming down to stay from Thursday just to see how I am those first few days - that's what I'm struggling with the most as am generally a planner and this is all a bit "wait and see".
I'm compiling a list of positives however banal so if you want to add any in please do, so far I have:
- I can keep eating Brussel Sprouts (I love 'em!)
- Meeting new & positive people
- Licence to wear comfy clothes all the time if I want
- Little things have stopped stressing me out - I'm even including Brexit in this!
- Other little things are making me smile (naughty kids in shops, squirrels, tacky Christmas gifts)
That'll do for starters, but please feel free to add more.
Wishing everyone a good, strong & positive week, lots of love
mine is 18th and like you I am very scared of this. It’s all Unknown’s as everyone reacts differently. We all need support through this. Hoping these lovely ladies will help us through. I’m thinking of you. Hugs 🤗 xx
Well got my start date today for chemo 26th November. Very nervous, But know it's a given has to be done. Hope you lovely people will give me courage to get through this
we lost Samantha in Aug 77, Rich Aug 09, Steve had his stroke Aug 18, I found my lump Aug 19.
Life has taught us nothing is for granted. We have to face each blow and hurdle with as much positivity as we can in order to get through it and breathe again.
This time will be tough but we will survive xx
Sorry... Posted too soon. She is a raw chocolatier and sells cbd raw chocolates. I know alot of people on Chemo in the US.
Aw Lisa, my anxiety went way over roof everytime I read anything. You always pass on hurdle then something else gets you. My oncologist told me there was some points on my lungs but told me they weren't important as if you randomly scanned 100 people you would find similar results. Made the mistake of telling a pal who is a nurse and he was 'like ok' with look on his face as if to say 'really'. Then told I had to have another US after MRI just' to complete picture' and then when I went for scan was told they had found other shadow in breast (just a cyst). Now dreading results of bone scan as same radiologist told there was no way a tumour this big would not have been detected in a scan I had in February and did I want a review? Luckily I am feeling so crap physically I hacen't got energy to be anxious anymore...
Glad you have found someone for your daughter to speak to, it will def help her deal with it all...
Seriously bin google, sends me into panic each time when I do the predict tool or prognosis stuff.
Hope everyone is having chilled weekend
Fantastic tips... I have just done my first shopping haul... Sickness bands, gaviscon, gin gins, hand anti bac gel, ginger tea, paraben free shampoo. You guys have now made so many more suggestions.. I will have to trawl through the messages 😁 and do another shop.
Anyone tried CBD.. Our friend is a raw choc
Hugs to Chrisy, Nhlanhla, Louie604 and anyone else feeling anxious x
I have my appointment to see the chemo nurse Tuesday morning, so I’m hoping they might be able to give me a start date.
I received copy of the letter from oncologist to my GP this morning and stupidly went on Google (I know I shouldn’t have) and am having a really bad day with anxiety through the roof. Sometimes I feel like I’m coping ok, but then it just takes one small thing to send me right back into panic mode.
Just wanted to say how sorry to read about the losses of your baby daughter and your son, I can’t imagine how awful to go through that.
Also your knitting is absolutely gorgeous!
Hope you are feeling a bit better today. How far apart are your treatments?
Thank you for your reply.
I told my daughter’s school and they said they would catch up with her every Friday, but I think this tailed off after a couple of weeks, so I found a private counsellor for her who she likes and sees every week.
All your hints and outside advice very welcome!
My hospital’s esthecienne recommended Tolériane nail polish from La Roche Posay with silicium to protect nails during chemo.
Loads of tupperware!! Storing food safely (I'm a bit of a germ freak) and having little pots of dried fruit, nuts, chocolate treats, ginger nuts, ritz crackers, sweeties....
My nurse suggested having hand gel at front door for visitors and my kids coming back from school...I bought disposable gloves for picking up dog poop etc....
Thanks for all your hunts Shi. I had nothing prepared as got back from holiday 2 days before Chemo started..was just impressed I got hair done, heart scan fitted in and did an Asda shop, ha ha. Need my daughter to get some shopping done for me.
Legs like jelly today. Managed a shower, walk round house, washing in and then collapsed again. Small steps....
Anyone else up in Scotland?
Yes skin can get dry through chemo, sorry forgot about that, a good one is udderly smooth with extra urea from Amazon, lots of us used that one and yes lip balm. Some of us painted our nails black during chemo it protects against the uv and helped keep nails, others have used a protective nail treatment (sorry can’t remember the name) to help preserve nails too. Just take it one treatment at a time 👭👭keep hold of each other and get safely through and plan your meet up for after you’ve all finished all ops, rads etc, our oct17 gang had weekend in London and it was lovely to all meet and spoil ourselves a bit ❤️ 💕💕✨✨Shi xx
I also got some figs, prunes, liquorice just in case I got constipated and have found prunes good 😊
plus sugar free sweets & gum to promote saliva.
my bodyshop consultant friend had put together some creams for my skin and lovely lip balm.
Difflam mouth ash, oral hygiene very important get you teeth check before starting, let receptionist know are starting chemo and they will get you in. Your Macmillan have pre loved wigs, so might be worth checking out there before having to pay towards your voucher. Also fantastic wigs available from shops that do extensions and hair oils if you have any near you? They are usually just little shops that are dotted around your city. Silk pillowcase was gentler on head after loosing hair. If you have long hair please think about donating to little princes trust, it helped to know my hair was going to do some good rather than in a bun ❤️ I kept a 3 weekly cycle chart throughout and wrote times I had meds, what my temp was etc in it, it helped so I could refer along the way. Take a notebook to onc apps with all your questions and write the answers in there, ask for your goody bag at the appointment so you’ll have your full meds, if you get oral thrush (lots of us did) it’s fluconzole you need them to give you. Remember on chemo you need to always check anything with your team, don’t just pop a paracetamol, it could need immediate antibiotics. If you antisickness don’t work don’t suffer ring your unit, they will tweak your meds. For the jabs, opposite sides of belly button, grad a bit of belly, plunge needle in, push down, let needle pop back up into container and all done takes less than a minute 💪💪for any needle phobics like I was it’s easy peasy you will be fine. Hope this helps 💕💕✨✨Shi xx
It's so hard to prepare, so far I have gotten a thermometer, travel bands, protein shakes, Gaviscon. Open to more suggestions.
like you I am waiting to start. Mine is 18th and I am really nervous to the point of not sleeping. I guess we all have a huge fight on our hands.
I have been given some tips for chemo. Travel bands on the wrist are very good for nausea. Wear them at the infusion and after that in between sessions. Gin gin sweets from Holland and Barrett are also good for sickness as is boiling raw ginger sliced up and draining the water to drink once cooled.
If you need the filigstram injections take an anti histamine tablet after such as Laratadine. This helps with bone pain.
Start taking your temperature every day before you start chemo to get your baseline temp so that If it spikes you know the difference.
hope these tips help. Good luck 😉 sending hugs 🤗 x
i have started to build up a basket of things I will need. Some of things I have prepared are the likes that of pain killers, baby wipes, hand sanitizer, soft tooth brushes, sea sickness bands, skin cream, dove two in one shampoo as trying the cold cap, which will hopefully be gental with the remaining hair. It has took my mind off the waiting a little
hope this helps x
I too feel like I am waiting to take an exam I don't feel prepared for. I too am starting to wake at 5am and I am usually a log!
Just reading the book 'tea and chemo' .. I would recommend it as a light, reassuring and positive read.
To those on Chemo now to those who are about to start... What are your top tips of things to buy/prepare. I am working until Wed when my PICC is inserted so I have a few days to prepare.
Like you I waited from 6th September when i initially saw Gp until seeing consultant/tests/oncologist and after seeing oncologist on the Friday 1st Nov, I’m now starting the climb up the mountain.
I think this entire 'process' has been all about waiting-It is something you kind of get used to. I had to wait from the last week of September to November until there was a clear plan of treatment in place -due to waiting for results and appointments to see other professionals. In the end we made the decision together which made me feel that I had some control of the situation. I was able to work October to November too so that was a good distraction from thinking about it 24/7. Making plans to see friends and family everyday helped me through the waiting time too. I also crochet which is an amazing distraction. Self taught from YouTube
Hey, I definitely relate on the anxiety caused by waiting, 😭. I just want to get started already and feel like I am fighting this cancer. Waiting is so cruel.
Thanks shi for advice xx
I’ve checked my temp every morning like I was told, will up my water intake. I have R.R. number, if the dizziness continues through to tomorrow I’ll give them a call and ask if that’s a usual Side effect.
Keep drinking loads, usually senna from day 3-4 after chemo works, get your anosol and baby bum wipes will help sooth sore botty. Always ring your rapid responses if you feel strange and no temperature just to keep safe, Chemo can mask other things. ❤️Keep safe 💕💕✨✨Shi xx
I have been experiencing dizziness and feel lightheaded, feels like I’ve had a few gins but haven’t. Making the nausea worse. Constipated too. Should of started the senna a few days before treatment. Nausea does get better when I’ve eaten, not used to this unbalanced feeling.
Fingers crossed for a better day tomorrow ☺️
Thanks for the replies guys, am walking loads at the moment with my little dog so getting plenty of fresh air. Think I will just have to try and clear my mind and try to relax I know my chemo will come soon enough so will have to just persevere and hopefully my sleep pattern will get better
The waiting is horrendous I agree, sorry you're not sleeping.... I was lucky enough to take the kids on holiday the week before I started so getting away from it all was kind of drastic action...anxiety is horrendous and from past times when I really had bad attacks just do breathing and counting and focussing on something...easier said than done I guess. Keep focussing on the fact that you are going to start exterminating the monster and walk alot and get as much fresh air as possible, if you can.. find something everyday that makes you smile and think about it when you're trying to sleep...don't go on google!!
Sorry guys I think I have mental verbal overload today...head back under the duvet tomorrow!!
Have you tried melatonin? That might help regulate your sleep - suggest also staying off screens for an hour before you go to bed, not eating anything 3 hours before. Maybe set up a soothing wind down routine for yourself?
Sounds like everyone having difference experiences of chemo due to start mine hopefully in the next few weeks as waiting is sendng my anxiety off the scale. Have got sleeping tablets from my Gp as not sleeping well at all, I don't know how many times I wake up during the night. Have tried meditation before I go to sleep and put it on when I wake up but not really helping. Has any one got any tips to hopefully help me get some sleep. Good luck to all going through your treatments fingers crossed for you all. Great to read tips that help will be trying them all
Yep it's weekly - not sure if that's a good thing (lower doses) or a bad thing (more often) but here that's the option if you want to try to save your hair. I'm ok-ish this week, pretty weepy though and don't have an appetite for much food. How are you doing?
Love the knits Deb ❤. Can understand why it's so therapeutic... I tried my hand at it once but failed as in most things I have no patience...x
Oh my word Deb, I can't really begin to comprehend all that you and your family have been through..😔.
All I can offer is support and love whenever you need to have a chat on here x
i was surprised how hard yesterday was (day 2) I didn’t expect to feel quite as rough as I did. Heartburn all through Wednesday night and Thursday. Headache, nausea and tired do very tired lol
feel much better today though only about a quarter as rough as yesterday
Deb knits knits a lot. Lol
It’s been my sanity saviour through some tough times. We lost a daughter aged 28 hours, a son aged 25 years hubby had a stroke 15 months ago and now me!
So I knit, making a few chemo hats at the moment. Think I’ve completed 3 since Saturday and almost finished my fourth.
You can never prepare your kids for 'your mum's got cancer' and 12 is hard especially with all rhe hormones, does your daughter have anyone outside family to talk to. Up here in Scotland we have Guidance teachers at Secondary that deal with the pastoral side of kid's lives (and as I just found out my kid's teacher had lymphoma 10 years ago in her 20's!). Anxiety is so very real for them and so much is also going on in their lives (can you tell I'm a teacher, ha ha)... if you want any hints or outside advice please let me know Lisa49...
Sorry to hear you’re feeling so rough. How long between treatments? I hope you feel better soon x
Your kids and husband sound great. My youngest daughter has taken it really hard, but she suffers from anxiety generally (and hormones!). Her twin brother on the other hand is just fine.
I’m still waiting for my date to start, which should be around the 26th, so a few weeks behind you.
Hello ladies ☺,
How is everyone today? I am on Day 9 and I am seriously wiped. Have only got out of bed to go to the toilet. Lightheaded, a bit dizzy and and oh so aching bones. I guess like bad flu. All dried up with slightly sore throat but no nausea at least. I had to go for a bone scan yesterday which was a major effort, I actually walked like an ill person, it was a shock.
I guess everyone is going to go through different symptoms and effects so please don't take mine as the norm! I was warned there was a dip, maybe this is it but sharing might let people know they might not be alone or that they are lucky and by pass bad points!!
Onwards and upwards, at least the sun is shining and I craved roast beef sandwiches with mayo for my lunch
Had my second weekly treatment yesterday with cold cap and gloves. Had outpatient surgery on Tuesday to put in a vein access/catheter thing below my collarbone - assume this is like the arm thing you mentioned? For some reason here they put it on the chest and you can’t shower, bathe, swim etc with it. It’s quite sore but hopefully be better before next week’s treatment.