September 2020 Chemo Starters

[Sarah50]

Good day Ladies, hope you are all feeling well,  I have a questions... was told to be sensible ref social distancing.. ie.. not go shopping or enclosed spaces, at the moment just isolating as im on day 10, so from day 7 to 14 im totally shielding, did go out early this morning for walk, but not seeing anybody in the house or actually anywhere else, not even my partner, as we dont live together, and he goes into the office to work.  How have you guys been dealing with it? the reason Im asking its out anniversary next saturday and want to go away on saturday night the 12th,  stay in a nice gastro pub, I will be 5 days before the start of my next chemo, part of me is saying stick to rules and should be fine, but othe other Im scared, and I dont want to go through the next months being scared all the time to actually live, and do things, I dont want this BC to rule my world, I know its happening but I want some normality in all of this,  Ive been lucky with my 1st round, side effects have been minimal, and now Im actually feeling better than I have in a long time, would love to dress up and enjoy an evening out.  Any advice would be great, well wishing you all a lovely weekend and any recommendations for netflixs will be much appreciated , big hug xx

[Mrs Kettlebell]

Hi MaryJane

Great to hear from you - been thinking about you this afternoon and glad to hear everything went smoothly today. Rubbish party bags, eh? Koukla’s got the right idea setting suitable expectations up front! 

Whilst maybe not the news you wanted to year from the MRI, it’s good to hear they are following up so quickly. Hope your scan goes well tomorrow; will keep fingers crossed for you.  

Day after, for me, has been symptom free so far, plenty of energy which has been used productively doing housework! Taking advantage until the post steroid/treatment flag sets in - lol!  Hope you have a good few days too 😊.

@koukla - all the very best for Monday. You’ve got this, and we’ll be thinking of you xx 

[Koukla]

Hi Mary Jane

Glad all went well today, no cake in your partybag either 😳 I'm going to call the oncologist and make sure I get some in mine 😂

Fingers crossed all goes ok with your scan tomorrow and you don't have to wait too long for the results.

I'm not having the cold cap bit I have been told I will be there longer on Monday due to talking through lots of things with oncologist before treatment. 

Hope you get a good night's sleep and continue to feel good.

Take care xx

[MaryJane]

Hooray I am home. First round done and 5 to go so on the way.

Also found was not as bad as I expected. Took 5 hours. FEC treatment for first 3 cycles so cocktail of 3 drugs & wee is now bright red but warned about that. Went for cold cap and found bearable. Blanket really helped but wished I had thought of a scarf as neck was very cold especially where tube from cap - ended up with towel wrapped around neck. Chin streak was also uncomfortable.

My party bag just antisickness drugs (2), steroids and bone marrow injections ....and lots more leaflets. So again guess all different and depends on treatment and where you are.

Slightly bad news is that MRI scan has picked up possible problem with lymph nodes which biopsy had previously come back on as ok so have to go to the breast clinic for another ultrasound tomorrow morning. Had hoped for a break from scans at but not to be so fingers crossed will feel ok to go and taking comfort from your posts Sarah and Mrs Kettlebell that side effects not too immediate.

Good luck for Monday Koukla. If you don't go for cold cap will be much quicker.

[Koukla]

Hi All 

Sarah I'm so glad your feeling good that's great news and glad all went well for you Mrs Kettlebell I thought of you today but you beat me to sending a message. I can't believe you both got party bags with no cake 😳 how rude is that 😂

I think your both right in the fact it's the unknown and that once the first session is done we can all just get on with dealing with it.

Had my heart triplex on Monday and they found a slight heart murmur (I'm assured it's nothing to get alarmed about but they want me to have a triplex every 2 months) covid test this morning and now I'm ready to go. 

I hope everyone continues to have a good week and MaryJane I hope all goes well for you tomorrow. 

We have this ladies 💪 I'm sure we can battle through together on the good days and the bad.

Take care xxx

[Mrs Kettlebell]

Hurray for feeling better Sarah - long may that continue! 

Great tip about the anti-sickness drugs. I’ve logged it, just in case!

Take care xx 

[Mrs Kettlebell]

Hi MaryJane

It looks as though different hospitals and health authorities have different guidelines - interesting to see!

Are you ok with the self isolating?

I too found the waiting hard. It’s a really strange mix of wanting but not wanting treatment to start. I’m hoping once we’re into our cycles of treatment, things will settle down. You’ve also had a lot of appointments in a short space, So hopefully from Thursday, more time to focus on you. 

Will be thinking if you tomorrow. Hope it all goes well xx

[Mrs Kettlebell]

Chemo 1, Day 2 of 2 

A super straightforward day - few standard questions from the nurses then straight in with the IV. I had Docetaxel and Carpoplatin p, arrived at 9.30, finished by 13.00.

I had the cold cap and, dare I say, it wasn’t nearly as bad as I thought. Developed headache towards the end, but this subsided to nothing once the cold cap was removed. I was REALLY glad of my fleecy blanket and a scarf to help keep warm. 

Prescribed steroids today and tomorrow, not really noticed any side effects so far. Advised to take last ones by c2pm to reduce problems sleeping. Have a self injection tomorrow to help boost white bloods. Otherwise, like Sarah, have been sent home with a ‘goodie bag‘ including mouthwash and anti-emetics, just in case of need. 

Feeling alarmingly well right now - off for a walk and to make supper. 😊  

Have been forewarned to expect a dip in a few days once steroids have warn off, and any effects of chemo set in. I’m keeping positive!!

Appreciate everyone’s treatment, experience and reactions are unique and this is just mine, but hope this helps give a wee idea to those starting this month. 

[Sarah50]

Morning Koukla,

morning, feeling a lot better today, yes got given a party bag, but no cake, lol!! they gave me all the different drugs I would need, for constipation, the runs, steroids, mouth wash, so yes came out well prepared.  Ive sort of figured out now, if I take an antisickness before going to bed, it helps when I wake up, as today feeling fine, so will keep to doing that.  

Good news you got your start date, I tell you its the unknown that makes us worry, but you will see, once you get started all will be good.  I have my next one on the 17th of September, at the moment the strangest thing is how my scalpe is feeling, it feels alive, no hair loss yet, but feels very strange.

Well good luck with it all, and let me know how you get on, catch up soon xx

[MaryJane]

Hi all,

I have been told I need to isolate/shield from when  chemo starts so can't leave home apart from medic appointments.  That said need to protect mental health too so have been told can go for walk outside as long as keep away from others and definitely no shops or crowded spaces.

Told today too will need to self inject for 5 says post chemo - this was news to me so haven't fully taken in. Think something to do with stimulating bone marrow? Anyone else having to do this?

Am both dreading Thursday start date and just wanting it to get started now. Had echo heart scan today and CT scan tomorrow. Oncologist today told me need to make appt with GP for blood tests before cycle 2 but when I called GP they said won't do so that doesn't help.

Good to hear how you are finding things Sarah, hope ok with you Mrs Kettlebell & will be thinking of you for Monday Koukla.

[Koukla]

Thank you so much Mrs Kettlebell that's great news. Hope you had a nice weekend and all goes well for you this week xx

[Mrs Kettlebell]

First Chemo Day 1 of 2 - just in case this is helpful to anyone! Sorry posting is a bit long...

My first Chemo session has been spilt over two days to monitor my reaction to the drugs. Today I had Herceptin and Perjeta. Tomorrow I’ll have Docetaxel and Carboplatin. 
 
Today has been straightforwards - no immediate effects (none expected, but still good news!). It took about one and a half hours for treatment to start once the usual health questions had been asked, canula fitted, etc. The first infusion took one hour, the second ninety minutes. Herceptin calls for six hour monitoring from the time the infusion starts, so a bit of hanging around before I go home. 

Things I was glad I brought with me:
- Painkillers - I’d given myself a headache before we even started! 
- Water bottle topped up - to make sure I got my 2 ltrs a day!  
- I was given lunch but packed some berries and nuts to snack on. 
- Tablet with a stack of TV and films downloaded.     
- Phone.   
- Fleecy blanket - first thing out of the bag! It wasn’t cold but where I wasn’t moving around it helped keep warm (warm socks would also have worked).
- Comfy clothes - I’ll come onto the cannula later, but given one arm was hooked up to a drip, and I was drinking a lot of fluid there were plenty of trips to the loo! The ability to manage this single handedly with easy to manoeuvre clothes was useful!!   
- Shoes that were easy to slip on and off for numerous trips to the loo!! 

Other things:

Cannula - I have small veins and delicate skin (apparently) which resulted in a bit of a struggle to find a suitable point for the canula. Am also a bit wimpy about needles etc so this part of the day was the least fun (though minor in the scheme of things). We’ll have the same tomorrow.  Weighing up the pros and cons for me, I’ve opted for a PICC which will be fitted before Chemo no 2. The Macmillan site has good info about about the different options. 

Medication - I’ve been given steroids and anti sickness drugs to take home in readiness for part 2 tomorrow.

The nurses have been brilliant - super helpful, good fun and really patient with all my questions. They’ve gone out of their way to make the process smooth and comfortable. 

Wishing everyone going through treatment, or about to start, very best wishes xx 

[Mrs Kettlebell]

Hi Sarah

Glad to hear all went with your first session. Sorry too to hear you’re feeling rotten now, and hope this passes quickly.

Look after yourself and feel better soon xx

[Mrs Kettlebell]

Hi Koukla

I’ve been told no need to isolate, but be careful and apply good common sense. I’m fortunate where I and Mr Kettlebell can both work from home, and recommended this continues through Chemo. Advised could still shop, but recommended to go during quiet times or, better still, home delivery. Meeting others ok - recommended outside, ideally, and in small numbers (1s and 2s) with usual distancing measures etc in place.m; and to avoid anything that might result in cuts such as gardening or DIY projects! x

[Koukla]

Hi all can I ask has anyone received any advice on if you need to isolate while having chemo due to the Coronavirus? I don't start chemo till next Monday but am just a bit worried about seeing my son's and daughter in law and most importantly my 15 month old grandson. Has anyone been told anything or are we just all using common sense? 

Thanks in advance 

[Koukla]

Hi Sarah

Pleased all went smoothly with your first session and glad you managed to stay good for a few days sorry to hear your feeling a bit tough now though 😔 I've got my start date of next Monday (literally found out 5 mins ago) I believe I'm having by cannula as haven't heard any different. Did you get given many drugs to come away with to help with sickness feeling? How long break do you get before your next session. Hope you feel good again before too long, be kind to yourself. Take care xxx

[Sarah50]

Morning All,  

Well chemo on the day went well, just in the evening started feeling quite nauseous, but got it under control, the following 3 days, also quite good, quite a lot of energy in the morning, not sure if that was the steroids helping there, but all good, yesterday was a sofa day, feeling very tired, and started to get an upset tummy, gone from one extreme to the other, so today not feeling great, but have gone back to work this morning, dont think i will last the whole day.  my scalp feels very weird, cant quite explain it, not sore, just aware of it, and feeling quite cold.  Saw somebody mention about canula and PICC , i have a PICC but wished it was a canula, but seem to see a lot of mixed messages on what is the best to have, im just scared of blood clots, as have very bad veins.  Well hope you all had a good weekend, and good luck to any of you starting this week.  Im off to get line cleaned in a bit. xx

[Koukla]

Hi Mary Jane

Hope all your appointments go well and your pleased with your new hairstyle. I had all my hair cut off before I started radiotherapy I thought I would get used to short hair before all the treatment began. I haven't got a date for my chemo to start yet but it will be in next two weeks, I've decided not to go for the cold cap as I felt I was already dealing with enough without have side effects from something else also. 

Hope you have a restful long weekend xx

[Koukla]

Hi, I only started writing by blog about 4 days ago but I have covered all of the treatment I have had up till now. It called "a year to never forget" and it is made public on Facebook if you or anyone else on here want to look at it. I'm not doing it for anyone else but myself but it's also a way of updating people while I'm going through the next stage rather than sending lots of messages. 

I've had all my bone scan, MRI etc before I started radiotherapy so I just have a heart triplex to do next week and then another covid test before chemo starts. 

I hope you get some sunshine in the UK this bank holiday weekend, it's the first time since I moved to Greece that I'm looking forward to cooler days as we still have 36 degrees now and it's 1730 😔 

Have a lovely weekend xx

[Mrs Kettlebell]

Hi MaryJane

Welcome to the Septembers starters. 

The number of pre-chemo appts is long isn’t it, I had no idea until now! Mine have been spread over two weeks, so not as hectic as yours. It sounds as though your team are super organised scheduling your appointments.  

You may not need, but in case, the nhs website has a couple of really good 2 min clips showing what’s involved for each of these procedures so you can get a good idea what to expect before you go. 

I hope the next few days are good for you and wishing you the very best for Thursday xx

[Mrs Kettlebell]

Hi Koukla

All good here thank you and thanks for thinking of me for Tuesday.

How about you? It must feel like a big milestones is complete now your rads + two weeks are done. How are you feeling? Hope not too long before you have a chemo start date - I’ve got my fingers crossed for you.

A blog is a great idea. A really creative way to use your energy. How long have you been doing it for? And are you writing just for you, or for others too?  I’ve been really grateful for reading a few blogs (or excerpts of) to help give a different perspective on things but understand too that getting personal thoughts and feelings down helps consolidate and process information.

It’s a bank hol weekend in the UK - and weather permitting, hoping to enjoy the outdoors. Hope your weekend is a good one too x

[Koukla]

Hi Sarah

Hope all went well for you yesterday and that you feel ok. Thought about you a few times during the day yesterday. Still waiting for my start date but pretty sure it will be in next two weeks.

Look forward to reading your update as and when you feel up to posting it. Take care 

[Koukla]

Morning Mrs Kettlebell, how are you feeling? Are you all ready for Tuesday? I pray all goes well for you and that the side effects you suffer are as minimal as possible. I'm still waiting to hear from my oncologist but my two weeks since finishing radiotherapy finish today so I'm hoping I hear soon. I've also started writing a blog on Facebook which is helping me. 

Thinking of you let me know how Tuesday goes when you feel up to it.

[Mrs Kettlebell]

Hope your first session went well Sarah -was thinking of you when I went for my pre Chemo Chat today.

Hope everyone else is gearing up for the start of their chemo. I’m in two minds - can’t wait to get started and get the treatment going; and eeking out each day keeping everything as ‘normal’ as possible! 

To the list of things to take, I’ve been advised to dress for comfort, take layers that can be easily peeled on and off for access to canula site and wear closed toed shoes (vs flip flops to avoid banging feet on furniture!). The other advise was to prepare as if each chemo session was a long car journey - think about things to keep busy, and what ever else might be needed for comfort. 

One surprise for me was that Onc wants to use a canula to deliver the Chemo instead of a port or PICC. The nurses have subsequently recommended a PICC and I’d prefer this too, although we won’t have time to fit this before my first treatment. Canula, then, for first session and being a bit squeamish about needles, ridiculously, this is the bit I’m dreading the most! 😂

Good luck to everyone starting this week and during September! x

[Koukla]

Hi Sarah good luck for tmrw, hope all goes well xxx

[MaryJane]

My start date is next Thursday 3rd. Before then diary full of medical appts, MRI today, covid swab Fri, ECG plus call with consultant plus chemo nurse call Tues , CTscan wed, then chemo itself on Thurs. Lots to take in. Feeling a bit overwhelmed but will be glad I think when it starts & the waiting is over. Hadn't thought of what to take so this is helpful. Unsure about cold cap - am having hair cut into short bob on Friday so will be less to fall out.

[Mrs Kettlebell]

Hi Sarah 

Good to meet you (virtually!). You sound super organised! 😊

I was also of thinking of a chemo bag and, have read somewhere, a hospital bag just in case a quick admission is needed. 

I’ve picked up ‘Ticking off Breast Cancer’ by Sara Liyanage and found this really helpful. She steps through her diagnosis and treatment, and includes lists to help get organised which I've been devouring (love a list!).

To those you’ve mentioned, I was going to add water bottle, snacks/food (not sure yet if food is provided and have been told my first could be an all day job), warm socks, blanket, book/magazine and charger for the phone.  I’m planning on trying the cold cap and think I’ll need conditioner and a comb. Been told that a water bottle and warm hat are also useful for coping during and after the cold cap.

I’d not thought of paracetamol or antacids, that’s a good call.

My chat with the Chemo nurses is on 27, so all the above may change, we wait and see! 

Wishing you the very best for Thursday xx 

[Sarah50]

Hello! Im starting chemo in 2 days on the 27th, but hope its ok to join this group.  Today I had my PICC line put in, which went well, no problems at all.  Had all my hair choped off last Friday, still getting use to it, but one good thing, only takes minutes to dry now.  starting with 3 x 3 weeks of EC and then 4x2 weeks of T.  

want to make up a chemo bag, just so I can grab it, and take it to treatments with me, with all the things I may need.  Are any of you doing the same? Any tips of what to stick in it? have hand cream, boiled sweets, lipbalm, antiacids, paracetamols.

Wishing you all the best, on this next journey xx

[Mrs Kettlebell]

Hi Koulka 👋 

I’m also a September starter - 1st treatment on the 1st - eek! Just over a week to go.

I’ll be having 6 x 3 week cycles of Herceptin, Perjeta, Docetexal and Carboplatin, followed by mastectomy and Herceptin continuing for a year.

I’m finding this online community brilliant for finding info and providing support. It’s great way of bringing people and resources together. It must be hard not having local English speaking support and hope this forum will help provide that for you.

Good luck with the remainder of your radiotherapy and I hope you get your Chemo start date soon x

[Koukla]

Hi I'm due to start chemo in September but I'm no longer living in the UK, I live in Greece where I can not find a support network or at least not one in English. I'm waiting to see my oncologist to know the exact date I start but just entering the 2nd week after the end of radiotherapy so expecting it to be the beginning of September. 

[Mai7]

Hi 👋 

This thread is for anyone due to start chemotherapy in September 2020.  I’m sure others will be here soon but please introduce yourself and you can all help one another through this phase of your treatment.  If you have any questions please post away on here and others in the community will watch over you whilst you are getting started.  Once you are into it you'll be pretty good at helping each other.  You can also ask the nurses on this forum if you have any concerns.  In the meantime, the top tip is always to stay well hydrated throughout chemo, aiming for 2 litres of water per day and make sure you have a thermometer to check your temperature every day.

Here is the BCN guide on chemo:

https://breastcancernow.org/information-support/facing-breast-cancer/going-through-treatment-breast-...

Here’s an excellent article for anyone concerned about hairloss. That’s pretty much everyone starting chemo: https://pinklotus.com/powerup/breastcancer101/chemo-hair-loss-and-menopause-hair-too/

Here are some apps which can help to keep you on track: 

https://breastcancernow.org/information-support/support-you/becca

https://www.nhs.uk/apps-library/owise-breast-cancer/

https://www.careology.health/

I finished my chemo in October 2017 and doing very well again now.  Here is my story which has some chemo tips on how I coped which were collectively shared from others who had gone through the same from this forum:

http://lifeafterlola.com/

If you decide to set up a private group its good to stay on here also during treatment as I know from experience there are some people who watch but don't immediately pluck up the courage to join in.  Your conversations can be a real comfort to others.

Best wishes

Nikki x