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August 2019 Chemo Starters

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Re: August 2019 Chemo Starters

Thanks Spottycotty

Will add oranges to the list!  Rather partial to them at the best of times so hopefully that will continue.  I will also get the lollies in stock.  Glad you are feeling better - enjoy the time with the children now you are feeling better xx

Member

Re: August 2019 Chemo Starters

Welcome JulieMe,

 

Sorry that you find yourself here as we all are but we are in it together now!

 

Pleased to hear you haven’t suffered too much, I’m at the fatigue stage at the minute, feels like someone turned earths gravity up!

Never mind though, I prefer this to feeling sick and dizzy!

 

Anyway, lovely to ‘meet’ you, hope you can enjoy your day xx

 

Member

Re: August 2019 Chemo Starters

Just to add to your list Wolvesgirl, I’ve now got a freezer drawer full of orange ice lollies! They scraped me through the first couple of days along with oranges kept in the fridge. Couldn’t manage any other flavour though!

Also crackers were a godsend to nibble on when I was at my worst. 

The hospital gave me the mouthwash to bring home with me.

 

My friends have asked if I need anything, bath soak, iTunes voucher etc, I said no thanks, if you come and visit all I need is a bag of oranges!! They rolled their eyes but it’s so true 🤣

pleased to say, I’m day 8 and back In the land of the living, off to cinema with kids later, feel bad for affecting their summer holidays!

 

Really hope everyone is else is well today xxx

Member

Re: August 2019 Chemo Starters

Hi Lisaloo, Blackcat and everyone else in our little gang

 

Pouring with rain here this morning and so dark!  Not looking great for our weekend away in North Wales but hey ho!  Anyway, Lisaloo well done for yesterday, I am sure you feel more anxious as it seems more real now you have set foot in the place - once Friday is out of the way as Blackcat says you will be one more day closer to the end of the treatment with me sprinting in six days behind you.  Have you got everything that you need?  I have been jotting down stuff that people recommend - alcohol free mouthwash, avocado oil, pineapple chunks, ginger biscuits etc - and will get them when I next shop.  

 

Have a good day all of you. xx

Member

Re: August 2019 Chemo Starters

Hi everyone.  I managed to post this in the wrong place yesterday, but Community Champion Jill has helped me find the right place.  Hope this finds you now...

 

Having been diagnosed in July, I was originally going to have a lumpectomy or mastectomy followed by radiotherapy.  But when I went for my appointment with the surgeon they'd had more results in that showed my cancer is HER2 positive - which changed things dramatically (I thought I was going to 'get away' with having chemo).

 

So now I'll be having 18 cycles of SACT, including 6 chemo at 3-weekly intervals (although I'm not sure whether the Ontruzant/Herceptin will be at longer intervals once the chemo is over).  I will also be having Zoledronic acid to help bone strength, but only once I have obtained a report from a dentist. There seems to be so much to do and sort out!

 

I had my first chemo last week (Weds 7th) and was fine for first couple of days, but have felt very nauseous (only been sick once) and nasty 'other end' business for the last 3 days.  Has anyone else been able to identify a pattern of good and bad days?  I had to have another biopsy (lymph nodes) yesterday and it was an early morning appointment, which I think didn't help at all and I felt awful all day.  SO tired too.

 

Just thought I'd introduce myself and wish everyone else on here the very best of luck with their treatment.  I'm scared, but am trying to remember that the drugs are my friends and that they will be fighting for me against the Evil Lump as we have named it.  Best wishes to all  xx

Member

Re: August 2019 Chemo Starters

Hi Em39

You have hit the nail on the head - thats exactly how I feel and I think the people that do know think I am crazy for feeling this way - I can't help it!  Like you, I know they are well meaning but the idea that random people know really personal stuff about me is something I cannot come to terms with.

 

Great advice re the paracetamol - thank you - I will take that on board.  I really hope I will be like the lady you mention - I guess none of know how it will affect us until we start.  

 

Thanks for the kind words - I am glad I am not the only one!  Very best wishes xxx

Member

Re: August 2019 Chemo Starters

 

Morning ladies.

 

Went to the chemo ward yesterday afternoon for my pre chat. I really am so nervous and anxious for Friday morning now 😬😳 

wolvesgirl I hope you have a lovely weekend away. I get what you mean about feeling out of control, glad it’s starting but also not! It is indeed a very strange time! I’m feeling so many emotions all at once. 

Hope everyone that’s already started is feeling as ok as they can. 

 

Lisa xxx

 

Member

Re: August 2019 Chemo Starters

Hi Blackcat

 

I found the Doc/Her/Per side effects weren't as bad has the EC.  I didn't have nausea, headaches or that spaced out feeling like i had with the EC.  I did find that days 1 -3 were ok then 4-8 just feeling achey and tired, bones in hips and bottom of back throbbed (a bit like flu aches) but were easy to fend off with painkillers.  I hope your treatments aren't too bad - but you will get through them.  Today i feel on a high after the last chemo (maybe steroids). 

Try not to worry about changing on to D/H/P after EC, it is doable and we all experience different side effects, Don't be a martyr to the pain if they give you pain killers take them it makes it easier.

 

I don't know if you ladies have read about nails and chemo or not - i would like to share with you my experience so far - i have just used avocado oil rubbed into my nails and cuticles every other evening and so far after my 7 cycles my nails look and feel fine, hopefully that stays the same.

Also i have used the mouthwash that was given at the hospital only every evening before bed and have not suffered with any mouth issues.  

These are just my experiences and might not work for everyone but just thought i would share.

Stay strong ladies

take care

Debi

Member

Re: August 2019 Chemo Starters

Hi Spottycotty, Em39 and everyone,

 

Sorry to hear that you have been having a rough time with side effects.  I am on Day 7 post EC and can definitely relate to the “concrete in the veins” feeling, and being in a haze.   I guess that a few of us on the thread are hitting the low point in the treatment cycle now (hopefully we will then get a few better days before the next treatment).  I have also been trying to describe to friends how it feels, and have found it impossible to explain.  I think that I feel like some kind of human chemistry experiment which has been unleashed, but over which I have no control.  Each day is one more towards the end of our treatment, though, and the drugs are hopefully doing their job (as their effects indicate).  Five more to go - yes, we can definitely do it, and we will help each other through.

 

Take care,

 

Blackcat xx

Member

Re: August 2019 Chemo Starters

Hi Debi,

 

Thanks for the message.  I hope that your last treatment has gone well today  - it must feel good to have got to the stage of the final one!   I am just experiencing the start of the low point of my first EC cycle now, I think (Day 7), and am wondering what the side effects of the docetaxel/Herceptin/Pertuzumab will be like in due course.  Today I have felt a bit more tired than previously and more nauseous, although I am keeping going with normal things as much as I can.  It is good that you have your surgery date fixed for early September, which is not far away at all.  I will check out the April 2019 starters thread to catch up on your journey and learn some tips!

 

Blackcat xx

Member

Re: August 2019 Chemo Starters

Hi Wolvesgirl,

 

I'm the same with the extreme privacy....sure my close friends that do know think I'm nuts, but can't stand to be the topic of anyones pity or gossip! Although my logical head knows majority of people are well-meaning.  

 

Great you have your appointment and plan....you'll manage it no bother! I took a paracetamol half hour before cold cap (seen it somewhere) and just try to distract yourself for first 10 mins or so.  

 

Know a lady who just came out other end of treatment with FEC-T and she was only a bit yucky feeling for a few days after treatment each time!

 

xxx

Member

Re: August 2019 Chemo Starters

Hi Spottycotty, Wolvesgirl, Blackcat and all you other lovely ladies,

Firstly thank you for the lovely responses I’ve had, I’ve never considered an online chat room before now and it’s lovely to know that you are all out there offering kind words, support and encouragement during such a stressful time. I know that everyone’s story and experience will be different but the fact that we all have one thing in common and a desire to support one another is a great comfort.

I’m 3 days on from my first chemo now and compared to some I feel that I’m getting off lightly at the moment, apart from a bit of a rash, feeling generally knackered and at times a bit woozy headed I think I’m okay. Like many of you I’m trying to carry on as normally as possible for my kids and family but the enormity of it all does catch me off guard sometimes. I’m just taking it a day at a time and keep thinking “at the moment I feel ok, so that’s good”. I hope those who’ve been feeling poorly are soon feeling a bit better.

Stay strong ladies

Sending you lots of love and positive thoughts xxx

Member

Re: August 2019 Chemo Starters

Hi Blackcat

 

I am from the April 19 starters and i noticed your treatment plan is very similar to mine.  I go for my last Docetaxol, Herceptin and Pertuzumab tomorrow.  I will carry on with the targeted drugs Herceptin and Pertuzumab every three weeks for a year.  My surgery is scheduled for the first week in Sept then radiotherapy after 15 session over 3 week.

 

If you or the ladies on this thread need any support or to ask a question please feel free.

 

Take Care

Debi

Member

Re: August 2019 Chemo Starters

Hi Lisalou 

 

Well I am back from the oncologist who was really nice and very informative.  I have my group prechemo session and 1:1 with the nurses next Wednesday and then start chemo on Thursday - FEC-T - so slightly different to you.  I have got agreement to try the cold cap (hurrah) but will get a wig too just in case.  So, I will be about a week behind you and supporting you all the way to the end.  I then have 23 sessions of radiotherapy and the biphosphonate therapy (which I am pleased about as I went through the menopause really young so I have often wondered if I should have treatment for that). 

 

I don't know how I feel - glad that its finally happening but distraught that it has to.  Anxiety levels rising in some ways but in others I feel more informed and therefore more in control.  Its the strangest time isn't it?  I need to get over the whole extreme privacy thing I think which is causing me a lot of worry.  Anyway, we are off for a long weekend on Friday for our silver wedding so that is something to look forward to and then back to get on with it.  Good luck this week and let us know how you get on. xx

Member

Re: August 2019 Chemo Starters

Ahh Em39,

 

Sounds like you had it worse than me and I thought I was bad enough!! You poor thing!

I can honestly relate to everything you’ve posted there. I had the IV anti sickness and saline drip which made me feel loads better but I have spent the last week in a befuddled haze.

I’ve managed to walk the dog and I even did a roast dinner yesterday but I haven’t been quite ‘with it’ if you know what I mean.

As I laid in the bed in hospital I did wonder if I can manage another 5 treatments but I’m doing this for the children too, so of course we can do it 💪

Today I have woken to the feeling of concrete in my veins, this must be the fatigue we’ve been told about, I’ve trued to explain the feeling to hubby but words can’t quite capture the reality!!

Anyway, 5 more, we can do it, we’ll do it together!!

 

Really hope everyone else is ok, hopefully you’re breezing through it.

Lisaloo, you’ve got this, please don’t eat freaked out, some people really do breeze through xx

Member

Re: August 2019 Chemo Starters


@EM39 wrote:

Hi Ladies,

really really appreciate the advice, it helps so much to be informed so we can stay well and recover quickly...any bit of control when we feel so helpless!

 

i had my first FEC on Thursday with cold cap and anti-sickness Infusion before. I also found cold cap to be fine after 10 mins or so. Felt great for a few hrs and then sickness hit me like ton of bricks. Was extremely sick for few hrs...gradually getting worse, bad headache and sore neck, left this for about 6ish hrs and finally phoned 24hr helpline and they said I needed seen and to go to A&E. They were great and very thorough (had ct scan and antibiotics) as blood levels had done something to indicate either infection or could be caused by severe sickness...thank god was just sickness!  Got IV anti-sickness and kept in 2ngts, have felt a million times better now I’m not sick just low on energy and bit headachey/woozy! Glad I didn’t leave it any longer to get seen as if it was something else rather than side effects then it could be much worse! So hard when we have been so well and full of energy previously, but we are being given such toxic combinations it’s bound to have a big impact on our bodies.

 

hoping next 5 rounds aren’t so bad and dreading my hair loss...but just thinking of this a 5 horrendous hangovers I need to get through over next 4 months!!! I’ve got 2 young kids and I’m doing this for them. 

 

Stay well xxx


Hang on in there I lost some hair with cold cap mainly at the sides but it was easily camouflaged ! Only wash once a week and buy wide-toothed comb 

Member

Re: August 2019 Chemo Starters

Sorry if this is a silly question.  Is it ok to have vitamin drinks? I’ve got the large dissolvable tablets you add to water? Thanks xxx

Member

Re: August 2019 Chemo Starters

Hi Ladies,

really really appreciate the advice, it helps so much to be informed so we can stay well and recover quickly...any bit of control when we feel so helpless!

 

i had my first FEC on Thursday with cold cap and anti-sickness Infusion before. I also found cold cap to be fine after 10 mins or so. Felt great for a few hrs and then sickness hit me like ton of bricks. Was extremely sick for few hrs...gradually getting worse, bad headache and sore neck, left this for about 6ish hrs and finally phoned 24hr helpline and they said I needed seen and to go to A&E. They were great and very thorough (had ct scan and antibiotics) as blood levels had done something to indicate either infection or could be caused by severe sickness...thank god was just sickness!  Got IV anti-sickness and kept in 2ngts, have felt a million times better now I’m not sick just low on energy and bit headachey/woozy! Glad I didn’t leave it any longer to get seen as if it was something else rather than side effects then it could be much worse! So hard when we have been so well and full of energy previously, but we are being given such toxic combinations it’s bound to have a big impact on our bodies.

 

hoping next 5 rounds aren’t so bad and dreading my hair loss...but just thinking of this a 5 horrendous hangovers I need to get through over next 4 months!!! I’ve got 2 young kids and I’m doing this for them. 

 

Stay well xxx

Member

Re: August 2019 Chemo Starters

 

Hi everyone.

 

Just checking in trying to catch up on how everyone’s doing. Hope your all doing ok?? Iv got my pre chemo chat, bloods and look around the ward tomorrow 😳 starting to get very anxious about Friday now. Thanks for all the tips and words of wisdom from those that have already gone through it have just started there chemo journey. 

 

Big hugs to everyone xxx

Shi Community Champion
Community Champion

Re: August 2019 Chemo Starters

Blackcat ❤️❤️Check your tongue for oral thrush, don’t forget it’s fluconzole tablets you want not the drops 💪💪 it’s easy to think oh i’ll See how that is in a bit, but during chemo please get straight into your rapid response teams, always best to check about everything 👭👭they’d rather you do so they can keep you safe ❤️❤️If anyone has burning pee but no temp, straight onto rapid response number, it’ll need antibiotics ASAP during chemo. 💕💕✨✨Shi xx

Member

Re: August 2019 Chemo Starters

Hi Wolvesgirl,

 

Thanks for your message.  Thankfully my throat issue has improved today - it’s much less dry and scratchy, and I had no temperature rises overnight.  I had bought some Corsodyl mouth wash in anticipation of possible mouth problems, and this seems to be helping (also eating pineapple ice lollies, as someone had recommended on another thread).  It’s just so tricky to know whether a new symptom is a chemo side effect, or the start of an infection about which we should worry   The on-call chemo nurse I spoke to yesterday said that it is always best to ring in for advice even for minor symptoms, because many of them are normal and we can be given reassurance about them (or be asked to go in for assessment if need be).  So although I felt a bit of a hypochondriac ringing in, I guess it was the right thing to do.

 

i hope that you are having a good day, and that your oncology appointment goes well tomorrow.

Bkackcat  xx

Member

Re: August 2019 Chemo Starters

Hi Blackcap and Spottycotty

Sorry you have both had issues to deal with - Blackcat, how is your throat now? Its going to be hard to think about all these things when normally we would just ignore them!  Enjoy Sunday, and we go forward into a new week together.  I will let you know the outcome of the oncology appt tomorrow. x

Member

Re: August 2019 Chemo Starters

Hi Bob123

Welcome to the group - like you, I started off this journey with an expectation of removal of DCIS and then radiotherapy.  They also found, to their surprise that in the middle of the DCIS was an area of grade 3 invasive ductal carcinoma so my journey has been extended.  I did not require such extensive surgery as you though.  I see the oncologist tomorrow to discuss chemo - my cancer is triple negative so no herceptin or hormones for me.   Hope you settle onto your regime and that you can share your journey with the rest of the August 2019 girls x

Member

Re: August 2019 Chemo Starters

Hi Bob123,

 

Good to meet you, although I’m sorry you find yourself on this forum where none of us would have chosen to be.  I started chemo last Wednesday and also am HER2+, but unlike you am having neo-adjuvant chemo before surgery.  My regime is two three-weekly cycles of EC, then four of docetaxol, Herceptin and Perjeta, 

 

So far I have generally been OK in terms of side effects - I have had almost no digestive or nausea issues, and in fact have been hungrier than normal (probably due to the steroids, which I will finish tonight).  I have had some tastebud changes, but am now getting used to never knowing what something I usually enjoy will taste like.  I haven’t felt too tired and have mostly been able to carry on doing normal things, although today I did have to ring the chemo helpline as I developed a scratchy sore throat, which apparently can be a mouth-related side effect (as long as your temperature does not rise).  I am finding it a bit stressful having to check every little bodily symptom and wonder what it means, but I suppose that’s what we need to do in order to keep ourselves safe when our systems are being zapped by such powerful drugs.

 

It will be good to share the journey with you, as I’m sure that comparing experiences and tips on this thread will help get us all through.  It’s great to know that we are not alone.   I hope that you will have a good day tomorrow.

 

Blackcat xx

Member

Re: August 2019 Chemo Starters

Hi Spottycotty,

 

I’m sorry to hear that you had to go in again for an ECG, particularly after your horrible experience with the nausea earlier in the week.  It’s great that you are now feeling much better and are able to look forwards, which is the most important thing.

 

You are right - it is hard to adjust to this new precarious, chemo-driven existence with so many unpredictable effects on our bodies.  I have been feeling well over the past couple of days with no issues other than strange tastebud changes, but today developed a bit of sore, scratchy throat and though I had better ring the chemo helpline.  My temperature was normal, but our chemo information leaflet stated that you could have an infection without a high temperature (it listed colds, sore throats, UTIs as examples), and to ring in to check.  The chemo nurse said that a dry/sore throat can be one of the mouth-related side effects of EC chemo, and advised to continue with the mouth care I am already doing (Biotene, soft toothbrush, salt water washes, mouthwash).  She told me not to self-medicate (e.g. with a throat lozenge), and to do an hourly temperature check in case of rises which could signal an infection rather than a side effect.  Thankfully I have not had any, but it does show how we now have to worry about every minor symptom, which previously would be of no concern.  I guess we will get used to it as time goes on!

 

I hope that you will have a good day tomorrow, and that things will continue to improve.

 

Blackcat x

 

 

Member

Re: August 2019 Chemo Starters

Hi Bob 123,

 

Welcome to the group, we are all either at early stages of chemo or starting in the near future. 

Sad that we’re all here but we’ll help each other along won’t we!

I had my first chemo last Tuesday, I won’t lie, it’s been a rough week for me, suffered with extreme nausea, had to go in again yesterday for ECG as was getting heart palpitations but all good now.

Finished my meds apart from the injections and I can feel the haze lifting!!!

Hard to come to terms with at first feeling like that, I was so fit and healthy last week 🤣

Anyway, hope everyone else is doing ok, how are you feeling in yourself Bob123??

Member

Re: August 2019 Chemo Starters

Hi All

I’m brand new to the forum and looking for others who have just started chemo. I was diagnosed with high grade, extensive DCIS and had a total mastectomy and tram flap reconstruction in May my DCIS had become invasive and was Her2 + so I started chemo yesterday; 12 weekly sessions of  paclitaxel and 3 weekly herceptin. Apart from a sleepless night last night I’m feeling ok today.

I’d love to hear from anyone out there who’s in a similar situation or who wants to share the journey with me.

Hope to hear from you soon

Bob 123 xxx

Member

Re: August 2019 Chemo Starters

Hi Lisa

 

Poor you - you don't need this anxiety on top of everything else but it sounds like you have a good manager who will support you.  Hope Macmillan are able to help you too. xx

Member

Re: August 2019 Chemo Starters

Hi Sue

 

Thanks for your inspiring post - it has really helped as the view from a year down the line is useful in reminding us that life will get better once we have navigated this tricky little section of the road.  I am so pleased to hear that you are feeling so well and have got back to work and also enjoying your free time.  I retired last year and to be honest have loved every minute until this started and with all the waiting for appointments, decisions, outcomes etc I found myself wishing I was back there just to take my mind off everything.  I am doing a distance learning masters so once term starts again I should be fine (chemo brain allowing).  Keep well and thanks again x

Member

Re: August 2019 Chemo Starters

Hi Lisa

It sounds as though your employer is being really supportive so im sure that will make it easier for you.

 

Good luck with everything

 

Sue xx

Member

Re: August 2019 Chemo Starters

 

Hi Sue 

 

The problem Iv got is the financial side of it too not just climbing the walls because I’m used to being in the go 24/7.

im on my own with my 2 kids so money has been a worry I really don’t need right now. My money is all that comes in. My daughters 18 and works full time so she looks after herself financially and does give me money for food ect but Iv still got my son. Iv got an appointment through Macmillan to see what financial help I can get so I’ll see what they say. I have got holidays remaining so ill

use some of those for now. My manager has been really good in that he’s saying if I feel like going in just for a few hours even just to see everyone then he’s fine with that and I’ll still get paid. 

 

Lisa xxx

Member

Re: August 2019 Chemo Starters

Hello Lisa

I took the decision not to work during treatment and was lucky enough that my employer didn't expect me too. I kept in touch with friends at work - lunch dates and a few meetings about really big issues but other than that I stepped away completely. At the outset I did think I'd be climbing walls - I've worked for 30yrs and I love my job - the first few days before I had my surgery I had to fight the temptation not to go onto my emails but decided I'd done a handover, someone was covering my role and they knew if they needed to they could contact me. After my surgery I'd managed to turn completely off and I focused on me, my treatment and my recovery.

I'd say absolutely everyone is different and it obviously depends on your financial situation but it you can afford not to work my advice would be to not. It'll take a little time to adjust but like me you hopefully find it easier than you'd expect and you will find ways to fill your time. Inevitably your treatment will slow you down as it progresses so taking work out of the equation will give you chance to focus on what's important - whethere thats spending quality time with ur kids or parents or just taking time to look after yourself. Looking back there's no way I would have wanted to get up every day and go to work - there were days where I couldn't have done it and days when I just didn't want to. You will be vulnerable to infection and starting chemo in August means you will be vulnerable to infection when the coughs and sneezes season reaches it peak so do think carefully about it. 

There are plenty of groups and classes out there you can join both with people dealing with cancer treatment but also people who just work differently - I certainly had my eyes opened to an alternative lifestyle whilst I was off - there is a whole world you don't realise exists when you're stuck working 9-5. We've all been dealt a 💩 hand - take time off work if you can and enjoy the good bits in-between the rubbish ones. You might not see it now or think it's possible but you will have some good days amongst the rubbish ones so if you can don't spend them behind a desk - fresh air awaits you in the local park!! 

 

Sue xx

Member

Re: August 2019 Chemo Starters

 

 

Morning 

Thankyou for all the tips and advice. 

Sue so nice of you to jump on here.. I’m going to get a fresh pineapple chopped up ready and I’m liking the idea of pineapple and cheese on cocktail sticks!! Good shout! 

I feel much the same as all you other ladies in that I feel so out of control with my life and i keep thinking I don’t want to do this! But I know I have no choice. I too feel like Iv been put on a rollercoaster I don’t want to be on and I can’t get off it. 

Im going to try and enjoy this last week of “normality” before starting on Friday. Work wise I’m just going to see how I feel, my boss has told me to just let him know how I feel. If I feel like going in for a few hours then I will. What did the ladies that have already gone through it do? Shi did you work while going through chemo? 

 

Lisa xxx

Shi Community Champion
Community Champion

Re: August 2019 Chemo Starters

❤️blackcat ❤️ you will all be fine, please just treat chemo with a bit of respect don’t get blasé , it’s not like usual you have no immune system and you need to keep safe ❤️I’m sorry to be clucky mother hen, I just want you all through safe which is why I say about temperature taking and even if no temp if something doesn’t feel right please ring your units, also watch out for low temperature reading too, again ring your units 😘😘💕💕✨✨Shi xx

Member

Re: August 2019 Chemo Starters

Hi Sue,

 

Thanks for popping in to this thread to give us such good advice and also to inspire us.  We all have a long way to go yet, but hopefully we will be able to follow in your footsteps and get there too.  I am just going to follow one piece of your advice right now, and get out some pineapple chunks from the freezer to have later.  I have the craving for cheese too, and maybe I will make some cheese and pineapple chunks on sticks (I remember them as a child in the 70s).  

 

All the best to you too - and thanks so much for your support to those of us just starting out on this scary process.

 

Blackcat xx

 

 

Member

Re: August 2019 Chemo Starters

Ahhh sue, what a lovely post, thankyou so much. 

ive been struggling over the past couple of days but this is just what I needed to hear and at the right time too.

thankyou 😘

Member

Re: August 2019 Chemo Starters

Hi Shi,

 

Thanks for the useful advice about the yogurt.  I was not told not to eat it by my chemo unit staff, but they did say not to eat soft cheeses and so presumably the same principle applies (due to the live bacteria, as you say). I am not able to check with my unit as they only take urgent queries over the weekend, but I will contact them on Monday.  Ironically, I was actually recently advised to eat this yogurt (it’s one which lowers cholesterol) by my GP, but this was just before my diagnosis.  I have also just checked on a chemo dietary sheet from Guys hospital, for which a Macmillan nurse gave me the link, and I see that it states that that this type of product should definitely be avoided during chemo.  So I will keep off the yogurt for now, and thanks for raising the issue on the thread as other people may also be wondering about this. 

 

Blackcat 

Member

Re: August 2019 Chemo Starters

Hello all

I'm originally from the August 2018 thread and had my 1st chemo anniversary just last week. I wanted to pop on here and share with you a few tips that I found helped me and well as a bit of info re my experience.

 

1. Drink plenty of water especially the few days around your treatment day - I was getting through around 8 pints per day. You'll pee a lot but it'll help flush the chemo out and staying hydrated helped me with the nausea and fatigue.

 

2. Rest and sleep when ur body tells you it wants to. The dusting and hoovering can't wait and you'll find something on TV to entertain you - i got hooked on 4 in a bed and the secret lives of 6 year olds!

 

3. I found pineapple chunks - fresh or tinned and a tart lemonade helped when my taste buds packed and left. Don't worry they do come back after a few days. I did find that with each cycle it's gets progressively worse and lasts longer but they will come back.

 

4. I developed an urge for anything cheesy in the few days after treatment. Quiche. Pizza. Cheesy crackers. I found eating what you want when you want it for a few days helps.  On my 2nd cycle i got a lust for yorkshire puddings - my partner sat and watched in disbelief whilst I ate them for breakfast covered in gravy bu t - I didn't care. I wanted them. I was hungry. I'd just had my 2nd chemo and I was pandering to my every whim!

 

5. Let other people help. You might be Ms Independent usually but now is the time to take it easy and let others takeover for a bit.

 

6. Take some sweets to suck on. Esp helpful during the C infusion if Ur having EC or FEC. I used to get an awful metallic taste and my nose would run - tissues also handy.

 

8. Take ur meds as instructed.If there is anything that worries you call the helpline - they really do mean it when they say anytime. I once rang at 3 in the morning when I got sudden and excruciating pain from the bone injections (note that not everyone seems to get these). 

I'll be honest as I progressed through the treatments my symptoms did gradually get a little bit worse and did last longer BUT they always did fade. Prepare yourselves for this and plan for it. It took me usually between 3 - 6 days to join the living world and again and generally by day 10 I was back to normal and enjoying the free time I had.

My treatment finished mid Jan (I had radiotherapy after chemo) and 1 year on I'm back at work full time, I've just had a holiday in France where I've climbed mountains, canoed rivers and cycled across islands. My hair is back - albeit it very curly (apparently a common thing post chemo) my hairdresser says it's stronger and thicker than before and every one says the shorter look has knocked years off. Losing my hair was the biggest thing for me - I was heartbroken over it - shaving it helped and very sadly it's inevitable for the vast majority of women in our situation. I did however have a wig that I loved and it looked great and I never thought I'd say that. Anyone who didn't actually know it was a wig couldn't tell. 

 

I'm not gonna lie - you are likely to have a crap time over the coming months but my partner and I were saying only last week that it wasn't as bad as either of us expected. On reflection it passed quickly and hopefully in Aug 2020 you'll all be looking back and being awed at what you've dealt with but looking forward too.

 

Best of luck to you all. My thoughts are with you 

 

Sue xx

Shi Community Champion
Community Champion

Re: August 2019 Chemo Starters

Please check you are ok to have yoghurt, friendly bacteria and all that during chemo, no soft cheese etc. I had a few wigs, one for treatments, one for best, tinsel, coloured ones the lot. Check your Macmillan’s they have pre loved ones, also luvyababes do a terrific selection of non fancy dress ones now too for under £20 😘😘 get your make up on and get the ones where you still see you ❤️❤️💕💕✨✨Shi xx

Member

Re: August 2019 Chemo Starters

Hi Blackcat

Thanks for the message - you have made me feel better already.  Its good to hear that so far you have had not side effects and hopefully that will continue.  I know what you mean about going to work - not only is it normality but also I expect you miss your friends and colleagues.  I was a nurse before I retired last year so I know what a support the healthcare community can be but you are right about the risk of infection - its time for the carers to care for themselves.  

I went to the wig lady today and that was more positive than I thought it would be - if I can't keep my hair then at least I will be prepared and there are plenty that look like mine does now (better to be honest - ha!).  I have this idea that I can keep this from most people - I love my community but I don't want them to know.  I don't know if I will get away with it but can only try.....  Hope you have a good weekend and manage to get out in the fresh air - its therapeutic value is underrated.  I will let you know about Monday if I don't crack and run out of there screaming! xx

Member

Re: August 2019 Chemo Starters

Hi Spottycotty

Someone at the gym who had chemo said that they wouldn't let her as "there was no point" (admittedly about 5 years ago) and I read that with FEC-T which looks like the treatment for TN that "you will lose all your hair" whereas the BCC info leaflets for other types of chemo mention the option of the cold cap.  As usual, I am trying to second guess everything!  Its just become a huge thing for me.  However, I went to the salon in town today that does the wigs and it was a lot better than I thought it would be - she is ordering some for me to try and they are not as obvious as I thought.  Have a good weekend and rest up xx

Member

Re: August 2019 Chemo Starters

Hi Wolvesgirl,

 

Thanks for your message.  It’s now two days after my first EC treatment on Wednesday, and so far so good.   I slept very well last night despite the steroids (which often keep people awake), and today feel OK.   I don’t have any feelings of nausea or tiredness at the moment, and have eaten my usual breakfast (porridge with fruit and a yogurt) without anything tasting horrible.  In fact today I just wish I could go to work as normal, but my oncologist won’t allow it due during chemo to the risk of infection (I work in the health sector with direct contact with patients).

 

It’s good that you have your first oncology appointment on Monday, and will get your treatment dates soon.  I know exactly what you mean about being backed into a corner - after diagnosis, I felt that I had been put on a nightmarish rollercoaster that I couldn’t get off, and that I had no control over anything in my life any more.  I felt very down and depressed, which is not normal for me.   When I got my treatment dates I felt a lot better, because then at least I knew that it was the start of the process of getting well again, even though I knew it was going to be tough.  Now I have started treatment, I feel a lot more positive, because I have got to know other patients in the chemo unit and we are all supporting each other.  Linking up with others on this forum is wonderful too, because we can share experiences and tips.  Like you, I was pretty robust healthwise before diagnosis, and I am still trying to eat healthily (despite weird tastebud changes), to walk each day and to do some yoga/meditation as usual.   I am also trying to do all the normal household tasks, even if more slowly.   I think that seems to be helping me through at the moment, although I am well aware that I may soon be hit with more side effects, and that every cycle will be different.  At the moment, my approach is just to take each day at a a time and try to do my best with whatever happens.

 

All the best with your appointment on Monday, and take care.

 

Blackcat xx

Member

Re: August 2019 Chemo Starters

Thanks wolvesgirl

 

Have they indicated that they might not let you then ???

Member

Re: August 2019 Chemo Starters

Hi Spottycotty

 

Poor you - hope all is better now - acute nausea is the worst thing!  Well done with the cold cap - I really hope they let me try it, it will be a massive blow if they don't.  Have a good weekend. xx

Member

Re: August 2019 Chemo Starters

Hi Blackcat

Its good to read your posts - I hope that you are continuing not to be suffering too much - some people seem to have such a bad time, I really feel for them and, I have to admit, get a bit nervous for myself!  I have my first appt with oncology on Monday so imagine I will know dates etc after that.  I really don't want to do this - I feel that I am backed into a corner I can't get out of which I imagine everyone feels like.  However, if I can get through it relatively unscathed then that will be a positive.  I am pretty robust and fit so hopefully that will go in my favour.  Keep doing well xx

Member

Re: August 2019 Chemo Starters

Hi Lisaloo

 

Well done - preparations help with not only passing the time but doing something in your control.  I am going to a local salon that does wigs that someone recommended to me.  Keep strong. xx

Member

Re: August 2019 Chemo Starters

Well, I’m loads better today, I’ve survived the day on salt and vinegar crisps and ice pops. definitely gone off coffee (gutted!) but did manage a cup of tea earlier.

one of my meds makes my lower back ache so much so I’ve had paracetamol for that and feel relatively normal at the minute..

also, picked my precautionary wig up today 🤗

Member

Re: August 2019 Chemo Starters

Hi Spottycotty,

 

So sorry to hear that you have been having horrible side effects of nausea and vomiting.  I’m pleased that the hospital were able to give you some IV treatment to help, and hopefully for your next cycle they will be able to factor this in and make sure that the same thing does not happen again.  The nurse who gave me my treatment said that vomiting and nausea were the most likely effects of EC, so I have been watching out for the development of these symptoms too.  I did wake up last night at one point with rumblings and discomfort in my stomach and went to take up residence in the bathroom with a sick bucket as a precaution, but for some reason it subsided and I was OK.  Today I have been feeling slightly nauseous/queasy at various points and am definitely more lethargic than usual, but otherwise have been managing to do most things as normal, even if a bit more slowly.  My taste buds have definitely been shot to pieces, though - the smell of my favourite espresso coffee this morning made me feel completely queasy!

 

I hope that you will have a good day tomorrow - each day now for us is one more on the journey to getting better. 

 

Take care,

 

Blackcat xx

 

 

 

 

 

 

 

 

Member

Re: August 2019 Chemo Starters

 

Hi mimim

 

Sorry you find yourself on here too. If your daughters are willing to help you should take them up on the offer. I’m sure you’d not be a burden to them and they wouldn’t offer otherwise. Take all the help you can get. 

Keep us updated on how you get on.

 

Lisa xxx

Member

Re: August 2019 Chemo Starters

Hi Spottycotty

 

Awww It sure sounds like you’ve had a bad 24 hours! Hope today’s a bit better for you. 

 

Lisa xxx