Morning all! Good to catch up on all your news and updates x well blooming done 🫶🏼
My first round in the cheltenham chemo lounge was yesterday and despite have a wobbler the night before (my lumpectomy had all the complications) and packing the house (2 big bags!!) it went fine.
The Team were amazing and though I’d specifically bought a mini insulated lunch bag for the suzipad mitts and slippers they were more keen on keeping my veins warm with pads so I didn’t use them in the end which I may regret, biggest fear being longer term neuropathy but felt they more worried about vein issues in the first round. Didn’t opt for a Picc line as dreaming of floating in the local pool and fingers crossed no cording as I still have this in my left arm. Drank lots and found chilly bottle water too cold at the end. Lots of coconut water too. Provided basic hospital snacks and sarnies (my friend had a chef in her ward in Taunton!) and was grateful to still have my solid appetite.
I had a funny back ache mid way through the syringes so they stopped for a while and got me a heat pad for my back which worked - one of the signs of reacting to the drugs is quick onset back pain so am glad it eased off and we continued.
The cold cap was pretty unfun mainly at the end when I was counting down the minutes - main discomfort was from mask straps (masks needing to be worn due to flu everywhere) behind ears. I cut up a bit of an old snood tube for round the front and chuffed I had ordered same faith in nature fragrance free conditioner as they had on the cart. They squeezed me into a S as M was slightly roomy. Think I am going to can it next time, especially if there’s some shed, as am super grey now my roots are going to be impressive I’m ready to wig up and will make round 2 less daunting and AirPods chirruped the whole time when trying to watch Graham Norton on phone!! First word problems.
Somewhat anxious about how the next few days unfold with the injections and steroids. One day at a time. Wishing you all well on your journeys. Thank you for being here especially for the sleepless mornings xcx
Ps I managed to get married last minute at the weekend (instead of Welsh summer plans) which was an amazing distraction and the best day ever and nice after 14 years to say my husband will be picking me up after treatment!
@dragonfly2 Well a great big hug coming to you.
So hard with your daughter without all of this. Hats off to you and well done for getting such a complex diagnosis before the age of ten!
My daughter has high functioning autism and we had very difficult early years (she still has melt downs at 22!) but I’m very proud to say she’s now a Staff Nurse and is very serious but adores her work. She is taking the pragmatic approach to my diagnosis and I think is in quite a bit of denial.
So sorry to hear about your mum too, life can be so unfair. My mum died of leukaemia fairly recently and it’s all still all very raw.
Hope all goes well with the portacath today and I’m sure I speak on behalf of our new group and say we’re here for you.
Look forward to seeing how you get on.
@checkpoint44
Congratulations on getting married! We did the same 14 weeks ago, fabulous reason for a distraction! So glad you had a lovely time. Are you having a party or a honeymoon later on?
An eventful chemo day for you. Your AirPod moment made me laugh.
Can totally relate to the ice mittens thing . Although I don’t think EC is high up there with the top neuropathy risks it’s still on the list and to be honest, I feel if it can make your hair fall out, surely it can damage your nerves!
I never wore my Suzzipad kit (at a cost of nearly £100 with bag, blocks and everything) I said that I was intending to use them for my Pac cycles tho but she said they need my hands for IVs but my cannula hand could be on ice. Can’t see how that’s going to work for blood flow or nerve protection to be honest. I think a PICC line is the answer but I get the infection risk, inconvenience side of things. Plus I’ve got a cracking bruise on the back of my hand from Thursday, not sure that will be ready for action next week!
I’ve never tasted coconut water, has it got special properties or do you just enjoy it? Imagine having a chef? I want treatment in Taunton too!
My injections weren’t too bad as I took regular brufen and paracetamol. They ended 2 days ago but I have a dull ache over my back and joints today. Anyone else experiencing that?
I also had a medication for nausea after day three and unfortunately for the last 24hrs I’ve had a very sore throat and have had a temp of 37.5 which won’t go down so I’ve had to call the helpline. We’re pals now after speaking to them at the beginning of the week as well.
All the unknown is unnerving isn’t it?
Hope you have smooth days ahead.
@indigo2 my portacath was a dream today for bloods. No messing about trying to find a vein. It took seconds for the gripper to be attached and then removed after. I’ve always had trouble giving blood - swear my viens have a sixth sense and know when a needle is near. Then its normally so slow to collect. As the port is under the skin, it doesn’t get caught up like my picc line did and now i have bith arms free for hugs with my children. Very happy mumma today. I’m even thinking of a tattoo after treatment to cover what will be a small scar left from where the port is inserted/removed.
I am now ready to start round 2 on Monday - each day is a day closer to the end of treatment. I even have my end of treatment appointment booked for after Easter xx
Hi I have been scrolling to see anybody highlighted different side effects experienced but cannot see anything that states a rash
I started Cyclophosphamide and Docetaxel last Friday three weekly infusions. Was given anti sickness meds to take and steroids and now started on injections to boost bone marrow white cells.
First two days after treatment I didn’t feel so bad but I have had a constant headache developed a itchy ++++ blistery rash under my boobs which is driving me crazy also like a nappy rash which again cannot sleep due to soreness and itchy. So I was awake must of the night.
Also have a feeling of like a hollow stomach and hunger pains as though I have not eaten for days. This starts during the night and sometimes during the day I get a feeling of indigestion high up
In my chest.
I rang hospital they prescribed canestan fur job area but it’s made it worse and anusol for bottom but it’s on inside of buttock area so anusol is not any use.
I have tried sudocrem but that doesn’t help. They said the infusion could cause bladder irritation but that hasn’t happened.
I rang hospital again yesterday and sent photos as I thought maybe shingles but they’ve not and to continue with the canestan I’ve now got severe low back pain and dreadful joint pain and headache continually so tried taking paracetamol but only takes the edge off. Taste has gone and mouth dry all the time.
Has anybody had any if the rash symptoms and how did you manage it. I also called GP yesterday and explained situation to receptionist but unlikely to get an appointment until next week if I’m lucky.
When I message the hospital about any side effects they say to call hotline but I don’t feel it urgent I just want to try and alleviate the soreness.
I really didn’t want to have any chemotherapy or radiotherapy but my children wanted to try and get the best outcome for recovery - I am triple negative
Thank you all xx
Please don’t hesitate to call that Helpline number … that is the only advice I can offer, I’m afraid. I’m sending loads of well wishes your way, because it looks like you are having a rough ride … get loads of rest - drink drink drink buckets and buckets of water. You’ll get through this
Hi, I had a rash, no blisters, my skin was so itchy it woke me up. I was on EC x 4 3 weekly, and pax x 12 weekly.
I spoke to the oncologist who prescribed Aveeno, it didn’t get rid of the rash but it helped the itching. I am 5 weeks post chemo and still use it twice a day.
Ring the helpline, they want to hear of any side effects. And drink water, it does help.
Good luck, hope you get things sorted. Honestly, you will get through this, it does get better.
Thank you so
Much
I do have some Aveeno that my daughter bought me for my Cancer journey along with other products which I will try.
I will give them a call I did call them before I started treatment because I had decided I didnt vant chemo or radiotherapy because of hiw it destroys good cells as well as cancer cells in your body and I had seen people looking so unwell. They were very helpful when I spoke to them and I changed my mind but this feels dreadful at the moment
Do please ring your rapid response number and tell them about the blisters, they should get you in to check you over just to be on safe side that’s what they are there for to get you safely through. I know no one wants to make a fuss to their team but you must, your being vigilant and your listening to your body, somethings not feeling right to you so don’t hesitate to get your team to check you over keep safe Shi xx
@etienne hi hope you are feeling slightly better now. As others have said, I would suggest ringing the hotline about that rash. Best to get advise from the professionals.
I had sore back that paracetamol didn’t touch too, it was from the white blood cell injections. Breast nurses suggested ibuprofen but I can’t take it so they suggested cocodamol instead which worked for me, so you could possibly try those?
I had the sore mouth too, corsodyl mouthwash helped - it was actually this thread where I was advised to keep on eye on it and beware of thrush.
Rest up and hope everything starts to settle soon for you x
A quick question.
For the days that you hibernate after chemo what do you have/need close to hand to help make you feel better/more comfortable.
Trying to get organised for something when I don’t know how you’ll be is a nightmare
I fall asleep to audio books … 2 bottles of water always close by … easy gentle meals that don’t take ages to prep … I drift around like a bit of waif - play games on my phone … lurk in these forums … binge watch TV … I eat frozen blueberries - and bananas - I am glad it’s Winter (it’s easier to hibernate when days are short). Today however, I actually managed a 30 minute stroll around my neighbourhood … Try not to overthink … you will figure it out as you go along and you will find what works best for you
Bottles of water, mint humbugs, lip balm, hand cream, paracetamol (and all the other meds lol). Phone charger!
Have got some crispbread and cheese spreads for quick easy snacks too as well as loads of berries.
We did the same 14 weeks ago, fabulous reason for a distraction! So glad you had a lovely time. Are you having a party or a honeymoon later on?
. Although I don’t think EC is high up there with the top neuropathy risks it’s still on the list and to be honest, I feel if it can make your hair fall out, surely it can damage your nerves!
xx
I’ve now got severe low back pain and dreadful joint pain and headache continually so tried taking paracetamol but only takes the edge off. Taste has gone and mouth dry all the time.
I’m resting in bed still xx
that’s what they are there for to get you safely through. I know no one wants to make a fuss to their team but you must, your being vigilant and your listening to your body, somethings not feeling right to you so don’t hesitate to get your team to check you over 
