June 2021 Chemo Starters

[GonnaGetThruThis]

https://lookgoodfeelbetter.co.uk/workshops/

Afte it was mentioned here a number of times I also booked myself onto a course and 'attended' it on Friday.  It was great.  The lady running it was Janet from NI and she kept everyone entertained.  There were about 10 of us in total.  You can just sit there and watch/listen or you can do the stuff alongside her.  I took lots of notes rather than do anything as i dont really have alot of products. 

One of the best tips i picked up was (for possibe future reference if the eyebrows go) there are these eyebrow tattoos that look so realistic.  She just had a cheepy set (link below) and showed us how they worked on her hand.

https://www.amazon.co.uk/Hair-Like-Realistic-Temporary-Stickers-Eyebrows/dp/B0937JKXSX/ref=sr_1_1_ss...

[hopeful1974]

@Louise65 I didn’t have to book onto the Look Good Feel Better course via my hospital - I just went onto the website and booked myself on. I received my goodie bag last week too and it was really full of high quality products. Definitely a good boost if you are feeling low. So maybe try for the online course if your hospital is being too slow? xxx

[Louise65]

@hopeful1974 glad your having a nice time in Cornwall and side effects haven't been too bad that you couldn't do anything. Enjoy your last couple days.

@simplyeve the caravan sounds lovely just what is needed. We had hoped for a trip to the seaside yesterday but I didn't feel up to the car ride so just went to a new garden centre.

I'm day 3 and apart from constipation yesterday I'm doing OK. Got up early this morning and went to car boot was good to get out partner said he could see it was hard going I use a stick on bad days if out as knee can be unpredictable. Came home with the biggest cuddly caterpillar for our retriever he thinks it great lol. 

I spoke with the nurse Friday about the look good feel good session as heard nothing. Told no idea when as struggling with numbers. Not their fault I know but as I had really low week its something I could really do with. 

Hope everyone else doing OK.

Love Louise xxx

[hopeful1974]

Dear Yvonne @simplyeve , I am so pleased to hear that you are having a lovely, relaxing time on Anglesey. A change of scene is so good for the soul. We are still in Cornwall and I am so glad we came. I had some diarrhoea early this morning and a headache for some of yesterday, but it has not spoilt the holiday as I was able to just spend this morning in bed while the others took our children surfing. I am feeling better now so hope that is it. Thank you for letting me know that your headaches were better second time around. It has given me hope as I had one yesterday but it cleared much more quickly than previous ones have and I don’t have one today. Fingers crossed! I am feeling good at the moment, having woken up tired. We go home on Tuesday. 

How is everyone else? xxx

[simplyeve]

Hello Ladies

Just checking in whilst relaxing in the caravan. It's so peaceful and quite and totally relaxing here. I hope everyone is still feeling well.

@Louise65  sorry that you had to sit and wait around for your treatment but hope you are coping I know it's hard when you suffer with the delayed nausea and I too find from day 6 onwards I seem to struggle even more and eating and drinking becomes such hard work, but from day 11 this time I have recovered more quickly even though my bloods haven't been quite right, so I'm hoping I can try and push through better when I have my next treatment on Thursday and then I am halfway through. Here's hoping the PC won't be as hard for you as the EC has been.

@Trowster  so sorry I didn't wish you well I didn't realise you were having your next treatment last Friday, I hope you are continuing to do well and not struggling like you did last time. Mcflurries sound great!

@hopeful1974 I hope you managed to enjoy the last few days of your holiday and you are still managing to cope, I found I had headaches with my first treatment but the last I was nowhere near as bad and at least you know why they have decreased your steroids now.

@Heels to walking boots , I'm so sorry that the cold cap didn't work for you, your hair is beautiful and will be again as it grows back, but in the meantime I love the wig and really think the colour is great! I was talking to my friend yesterday and she has offered to come with me to Morgans if hubby doesn't want to come so I have a nice outing to look forward to.

@Impatience , @Fairie , @JessicaB , @GonnaGetThruThis , @Flower123  hope you are all relaxing and enjoying the weekend, we have a lovely blue sky and sunshine here in Angelsey. Take care all.

Much love Yvonne xx

[Mai7]

Hi @Louise65 I just found your message.  I hope you are ok.  It’s hard to throw in the towel and admit that you have to rest at times but just take all the rest you need and you can catch up later.  The eating is a bit of trial and error to see what works.  My diet was less than ideal at times during chemo.  

[Trowster]

Louise, my appointment was 12:30 and they hooked me up at 1 pm, I took lunch with me as I needed to take my steroids, the treatment was so much easier with the pic line and so much quicker too, my bloods were all good, I was out of there for 3 pm and felt really good, hubby took me to Maccies for a celebration McFlurry, 😋😋🥰 then I even went shopping because I fancied a noodle dish for my dinner, these steroids really give me an appetite, I came home n cooked n really enjoyed dinner, feeling very tired but awake at the same time, it’s such a weird feeling but I’m hoping to get some sleep tonight because last night I only had about 3 hrs, let’s hope the next few days are good to us, n I hope we both get some sleep xx

[Louise65]

@Heels to walking boots 

Wow you look fantastic in all pics love the crop look but also the wig and colour look amazing. Xxx

@Trowster how you feeling after today's session?

My treatment started almost 3 hours late apparently the people who book always overbook you'd think by now they would communicate with people to save them the long wait. Treatment went well all my bloods are really good. That's the last EC I start PC on 13th August for 9 sessions which will end mid October. 

I've eaten my tea and enjoyed it but think I will have early night as didn't sleep well last night so very tired. 

Hope everyone is OK. 

Love Louise xxx

[Heels to walking boots]

Thank you @Trowster ..i think a little fun was needed to get me to this stage. How did your session go today? xx

[Trowster]

Heels, Wow  it looks fab, it just looks like you have had your own hair coloured, I think you also look good with the cropped look, 

[Heels to walking boots]

Thank you Sian @hopeful1974 ...you all inspired me ..and i am thankful that we have this group to support us through this....it's a god send! I don't feel quite as alone going through this 😊

i will have to remember to mention it at the oncologist appointment to see if i can get some Lorazepam to help. As i am too just managing them with Paracetamol which has a hit and miss affect. 

Sending lots of love to all  xxx

[hopeful1974]

Dear Anabel @Heels to walking boots , wow! What a wonderful wig! I can very much identify with the sense of loss when your hair fell out. I felt the same when it happened to me. Even though I knew most of it would probably fall out in spite of using the cold cap, it was still a very emotional thing. 

I suffer from headaches. Last time round I had them for about four days from day 7 after chemo. The nurses and oncologist think the steroids may be to blame (like a delayed withdrawal). I took steroids for only three days this time so I will see if I get headaches for fewer days. I am only day 5 post chemo at the moment. I have Lorazepam to help me sleep for the first seven nights and that helps with headaches so I don’t know if I’d have had any earlier if I didn’t have that. I find them completely debilitating and just manage them with paracetamol and ibuprofen in alternation. Last time round, at least they were mainly during the day so I still managed to sleep at night. 

We are all so brave to be pushing through this and we will pull each other through. Love to all xxx

[Heels to walking boots]

Here’s goes with pictures… me before, now and with a fun wig lol

 

 

 

[Heels to walking boots]

Hi Ladies,

Apologies for being out of touch for a while but after my chemo last Friday -i wasn't in a good place mentally as although i did the cold cap a second time ...my hair got matted and unfortunately mostly came out i think i lost about 3/4 of my hair. And although i have been half expecting it and along with taking steroids i was feeling really low. But seeing how you have all embraced this ..I am pulling my big girl pants on and trying to get on with it...as it's a small price to pay for health. And my super star hubby (still getting used to saying that lol) did manage to persuade me out and took me out for wig a consultation --( i can thoroughly recommend Morgans they were lovely) and we decided to have a bit of fun --so have gone for a complete new look. I will try and share photos when i figure out how as seeing all of you share photos has greatly inspired me as you all look fantastic.

Also, not sure if you ladies suffer this but i have been suffering from headaches although today thankfully they have seemed to have stopped --i am sure this heat is not helping but it completely wipes me out.

@Louise65  and @Trowster  wishing you all the best for your treatments today--as Sian says another one ticked off!

@GonnaGetThruThis -love the news! Wonderful that you celebrated with Fish and chips love that!

@Flower123  glad the family lifted your sprits lovely to have had them round for sure.

@hopeful1974 --hope you are enjoying your holiday and feeling more energized today. 

@simplyeve ..sorry to hear all that you are going through but glad that its is improving and the team are of top things. Very glad you are getting away and hope you enjoy your nights away. Will be going away next week to Abersoch and the Porthmadog to spend some time with my girls.

I do hope everyone is else is well ..I am thinking of you all and sending lots of love and positivity your way.

Love
Anabel xx

[hopeful1974]

@Louise65 and @Trowster Sending best wishes for today’s treatments. Another one ticked off! I hope all side effects are manageable. As you say, Louise, it is good that the heat is lessening now. xxx

[Louise65]

@Trowster morning and morning to everyone. My appointment is 11am. He's hoping we both have good day and week ahead. At least its cooler today. 

Hope everyone has good weekend.

Love Louise xxx

[Trowster]

Yvonne, 

so sorry you’ve been having such a tough time, is there any chance you could ask for a Picc Line to be fitted to easy with getting bloods and giving treatments, they have fitted me one after all the trouble they had getting candles in, have a lovely weekend and try to relax, hope the weather holds out for you,

GonnaGetThruThis

Fantastic news, I’m so happy for you, 

@hopeful1974 

really hope you managed to enjoy your holiday and this week hasn’t been to bad for you, I’m also on steroids, 4 tabs morning n lunch time Starting the day before chemo and continue for 3 days, hence last night I couldn’t sleep only managed about 3 hrs, last time after 3 days I took amittriptyline to help me sleep, and it really helped.

@Fairie hope things are improving for you, always contact the team for help, that’s what they are there for, and they want you to call them, 

@Flower123 

so sorry to hear about your awful bone pain and so glad you was given some morphine to ease the pain, I hope it has now passed, 

@Louise65 

hope all goes well for you today, what time is your appointment, mine is 12:30, let’s hope with have a good week with little side effects this time, 

wishing everyone else a good weekend and pain n sickness free days, 

[hopeful1974]

Dear Yvonne @simplyeve , I have been wondering how you are, so thank you for the update. I am glad to hear that you have a little treat planned before your next chemo. Making the most of the better days will help enormously, I think. I am sorry you had to go in for infusions but also it does sound like they are very much on top of things. I was disappointed when my chemo was postponed twice but would much rather be safe knowing they are looking after me. I think you are very right when you say that with each cycle hopefully they can tweak the meds and other aspects such as doses to make sure we don’t find the treatment too hard, but there is definitely an element of trial and error at the beginning. I’ll be discussing my anti-sickness regime with them next time!

Having slept for most of yesterday and all of last night, I am hopeful that I will have a bit more energy today. Love to you and enjoy your campsite trip. Siân xxx

[simplyeve]

Evening Ladies

I thought it time I checked by in and let you know I am still in the land of the living and improving (fingers crossed). Although overall I have been very much better since Monday, my blood results were still concerning the team, as my kidney function was still detiorating despite my taking on as much as I could fluid wise, personally I think the heat played a large part too, so it meant having bloods again on Tuesday, I also took a water sample, but although the could see bits of something in it, it hasn't been identified as yet but doesn't seem to be getting worse atm. Anyway after bloods on Tuesday it was decided I needed fluids, so was to go in to IV unit for an hour on Wednesday morning, then unfortunately it turned out my magnesium level had also dropped again, so instead of being there an hour I spent 6 hours yesterday on a drip getting that too. Repeated bloods again today and they are now happy with the kidney function and magnesium, but apparently my platelets are still low so now I get the weekend off and get bloods repeated again on Monday, given I only have one good arm its beginning to look a bit like a pin cushion. But the good news is hubbie and I are off to the little campsite we found last time for 3 nights tomorrow so I can ready myself for the next battle with chemo!

@GonnaGetThruThis  I was so pleased to hear your wonderful news, it it proof positive for all of us that this journey is worth whatever we have to go through.

@hopeful1974  I'm so sorry you have felt ill and hope it hasn't spoiled your holiday too much,my last Chemo was the first time I had extra steriods and it was to help with the sickness, basically I took 4 am/lunch for day before, day of treatment and day after chemo, then the next two days I took 2 each morning. I also had Emend over 3 days and then switched to cyclazine straight away. I do think though that my anxiety was a by product of the extra steroids and so will definitely use the diazapam next time round.

@Impatience that's a great tip for the heightened sense of smell I have a few yankee candles so hopefully I can find something more tolerable too.

@Fairie I do hope you are starting to feel better and that you have managed to get in touch with your Oncologist. I have a team that I can contact any time and they have been really great in trying to ensure I am feeling better. Though I do think it is trial and error at first as we are all different in our response to the treatments we receive.

@Flower123  I hope your bone pain is being managed and that your team can do something to improve your next treatment, though I do think as we go through each treatment we become more aware of what to expect so hopefully can plan better.

@Louise65  Good luck with your treatment tomorrow, I hope it is better than the last one!

@Trowster  thanks for the advice about Morgans I will definitely go and have a look at what is on offer.

@JessicaB , @Heels to walking boots  I hope you are both well.

Have a good weekend everyone and here's to moving forward together.

Much love Yvonne xxx

[hopeful1974]

@Flower123 Family popping over must have been lovely. I am feeling a bit better again now and watching Friends with my daughter. I am going to try going for a stroll down to the beach after dinner so that at least I will have been out once today! Your pizza sounds nice. Take care xxx

[Flower123]

@hopeful1974 

Sorry you have not been good today . The heat is certainly getting to everyone. Glad you have had some good days away and hopefully tomorrow you will be up to a bit more . I expect it lovely we’re you are and not to busy . 

I had family over today and they lifted my spirit and am feeling better . Just given my little sausage a cool bath and hubby has popped in a ham mushroom pizza I fancied.

Take it easy xx

[hopeful1974]

@Flower123 So sorry you had the nasty bone pain on top of everything else. I hope they can tweak things next time so that it doesn’t happen again. 

I am really struggling in this heat and looking forward to the drop in temperature tomorrow. I only had three days of steroids this time as my oncologist said that I shouldn’t have had five days last time. As a result, I was really sick this morning and have been wiped out for the rest of the day. I have hardly had my eyes open all day. On the advice of the hotline, I took an Ondansetron tablet which seems to have helped and I have not been sick again. I am feeling a little better now but the heat is not helping. I am still glad we came to Cornwall as we had two good days and I am hopeful that I will feel better tomorrow. 

How is everyone else doing? xxx

[GonnaGetThruThis]

Thanks everyone, its good to know that the effort we are going through is worth it.

@FairieI am having 3 x 3 weekly sessions of EC and then moving onto 12 weekly sessions of Pacliataxel.

[Fairie]

@GonnaGetThruThisThat’s wonderful news! 👏👏👏Really pleased for you!🥰

are you having 4 Chemos or 6?

sending lots of love 

Sharon (Fairie) xxx

[Flower123]

@GonnaGetThruThis This is amazing news . Im

sure the best ever fish and chips celebration  meal .

@hopeful1974 It sounds like your getting a good balance away and it certainly is very warm !

I have been reading the post and nice to hear what everyone is doing and experience . I think most of us are struggling with the warm weather and fatigue! For me it started of good after Friday chemo first few days outside or sofa with fatigue and what they call chemo belly such a pain on right side between right rib cage and lower stomach. Then no sleep due to steroids. These SE I was managing BUT then omg had my 3 rd evening injection on day 4 and within a few hours my body was in so much pain hubby could not even touch my hand without the pain going through body . Took paracetamol but the pain was so intense I could not take it anymore.Even sat in warm bath with Epsom salt at 1.30 am to try get some relief. My poor family have seen a side of chemo that they have struggled with seeing  me in some much pain . It got to the stage hubby call helpline and they got me on morphine straight away . Tonight had last injection and pain relief seems to have helped a bit .Sorry for the long message as you all understand some days worse and tonight no sleep again . 

Thank you all for your support sending love Jennifer x

[Louise65]

@GonnaGetThruThis That is such good news totally understand your hubby bless him and bet the fish and chips tasted all the better.

@hopeful1974 glad to hear your doing OK and enjoying your break away. 

Xxxx

[JessicaB]

@GonnaGetThruThis so pleased to hear this news xxxx

[hopeful1974]

@GonnaGetThruThis so delighted for you! Hopefully that will give you good motivation as you go forward. I’m so glad you had a lovely meal to celebrate too. 

I dozed a lot on and off today (not helped by the heat) but then we just had a gorgeous coastal walk into the nearest town for dinner and I enjoyed some Cornish hake. Not too bad for day 3 after chemo!

Hope everyone else is ok. xxx

[Jennet]

That is fabulous fantastic news. Well done you. Keep going x

[GonnaGetThruThis]

Ladies I need to impart some good news in amongst all my recent doom and gloom.

Hubby and I just went to the hospital for a checkup with the Oncology Dr.

As I said before I wasn't sure what to expect as it was the first one with her since I started the treatment but expected her to ask me about how ive been coping and for her to give me an examination and I was right.

She was impressed I hadn't had any major side effects and of course the fatigue is common but that i was coping well.

She asked if i felt there was a change in the lump and I said that I think it's either hiding well or definitely gotten smaller but she would be able to tell me for sure. This is the part I was waiting for as I was absolutely positive it had shrunk.

After having a good feel 😅 she said wow yes it has definitely reduced to only about 1cm (from 5cm when she last checked before treatment).

So yeah that is bloody amazing news and even more so as it is is early on as I've only just had treatment 2.

For now we carry on with the same treatment plan and will discuss surgery later on down the line.

I'll see her again next in September when I will have had the last EC and I should have had at least 3 of the weekly doses of P and also the results of the generic testing will have come back.

Hubby was so happy to have some good news he was practically bouncing out of the hospital.  So on the way home we stopped off at the Fish and Chippy to 'celebrate' 😅😅😅 I would have preferred to crack open a bottle of bubbles but that will have to wait.

Love to all x

[Louise65]

@GonnaGetThruThis it sounds like we go through similar. I hit day 6 and my body just cant function. After my 2nd session i ended up in bed days 6-8 then days 9&10 on the settee. I managed to eat small amounts but  drinking was hard going. I managed to get just enough in me by having tea, chocolate milk and strong ribena. I think i managed to hang washing out but that was it. Im so hoping my final EC Friday i dot go through the same. 

@hopeful1974 hoping your trip away is good and you get to enjoy it, a change of scene is definitely good for the mental health. 

@Impatience had my covid test today so back to being a prisoner, early tomorrow i have my bloods then thats it until Friday. I will go in the same as last time as relaxed as possible and drinking lots in the hope the first days  i can function fairly normal. Hope all goes well for you xx

@Trowster Love the wig but you also rock the bald look. I only wear a sunhat now i just get to hot. I go shopping etc bald and apart from today when i did make a couple feel uncomfortable after they just sat there staring at me ive not had any unpleasantries. 

@Mai7 @Flower123 @JessicaB @Heels to walking boots @hopeful1974 @Jennet hope your all well. Apologies if ive missed anyone im doing this using pc and mobile and should of written everyones names down at the start. 

love and support Louise xxx

[GonnaGetThruThis]

Thankfully feeling better than the last half week but still decided to have a sit on the couch and do nothing day. I've been binge watching The Serpent.  The heat is still making it tough but hopefully I can see light at the end of the tunnel so to speak.

Hope everyone else is doing OK?

[hopeful1974]

@GonnaGetThruThis I certainly had a very hard time with EC. How many more cycles of it do you have? My family had to adapt to my new way of being and just had to learn to look after themselves a bit more! My tip for your meeting with the oncologist is to write down any questions you have as it is very easy to forget to ask something. 

I had my treatment today with the Carboplatin reduced to 50% of the normal dose to hopefully prevent my neutrophils from plummeting. I had 80% of the Docetaxel and full amounts of Trastuzumab and Pertuzumab. I am feeling fine so far and we are on our way to Cornwall. This may well be our only holiday this year, so I am very pleased we were still able to go. It would have been such a shame to miss it because of a delay in chemo. I know I will have a sleepy day or two, but that is fine as the others can go to the beach and leave me dozing. I have to avoid the sun sadly as my facial skin is so sensitive to it that it breaks out in spots, some of which are painful. They go away as soon as I have been away from the sun for a day or so! Like you, I normally love the sun but it doesn’t love me at the moment. So, the less good weather forecast for the end of the week will be welcome for me! 

Sending love and hugs to you all. xxx

[GonnaGetThruThis]

Hi everyone,

Well this last week, for the first time I feel like I'm 'on the journey' as I have been doing it quite tough.   Reading through other posts though clearly not as tough as some others, but in comparison to my first 3 weeks cycle it i way worse. First couple of days were fine and then Wed/Thurs afternoon i felt alot more tired after being fairly nornal in the mornings (as in feeling ok and also carry on with stuff) but then Friday it just hit me.  My whole body was exhausted and i just shut down.  I was trying to explain the feeling to my husband in that it wasn't just being really tired but thaty exhausted me more so i gave up.  Sat was the same and so i just let the rest of the house get on with it.  Sunday I was mildly bettter but then of course the heat just made it a million times worse.  I have never ever complained about the hot weather here as i love it but now..... not so much!  Bring on bloody winter!  I mean 'normal people' struggle in the heat dont they so of course this is going to be much worse for us.   I woke up this morning and felt better but tired from the heat and interupted sleep.  I had to do some work and bits and pieces so did them throughout the day and made sure i rested in between (in the coolest room with the fan blasting).

It is day 8 or me so I probably need to accept that this is more the first week reality than my first cycle.  For those that read my comment last Monday, i only had the 50% dose of E so attribute this to the extra 50%, plus accumulation plus the heat.    Today my head is qute fuzzy and i feel like i have blocked sinusus, but apart from that i seem to be ok, hopefully.  Still eating, drinking, going to the loo ok, which i know is important.  Fingers crossed it is on the up from here.

Just checked my calendar and remembered I have an oncology appointment on Wed afternoon.  It will be with the Dr I saw before treatment who checked me out and I agreed treatment with.  Anyone know what will happen?  I assume it is a quick q&a and she will examine me?

Finally, sorry for those others that are also sufferering this cycle.  We have to remind ourselves it is a means to an end and we will get through this and we are now 1 day closer to that end.  Thinking of each and everyone of you and looking forward to hearing some more positive in the coming days.

Kim x

[Trowster]

Aw Yvonne, so sorry to hear things have not been so good for you, I hope upping your fluid intake will help with the next kidney tests, so sorry you’ve had awful nausea too I hope that will now improve as time goes on, Morgan’s in Chester are so nice, she ordered me some in that I liked in different colours, I only tried the white one on as a joke but actually loved it, I also went to the shop in Prestatyn as they hold different stock, just try and take it easy and don’t push yourself to hard, but with this heat remember to keep drinking plenty, we want you at home not in hospital, xx

[Impatience]

Hi @Fairie 

I’m really sorry to hear you are having a hard time but you have done this before so you will do it again. Keep telling yourself this will end. 

On a more practical note I also suffer from the smell thing especially in my first week. I found a smell I liked (lavender) and I have it at the side of my bed and when I feel yuk I smell it and it seems to work. I’ve surrounded myself with nice smells. 

I started out this treatment eating high grain healthy food but this did make me go to the loo so I’ve reverted to very plain food in small amounts. The porridge has been replaced with cornflakes, multi grain bread to plain white small slices etc. I’ve also cut out caffeine. 

Wishing you a much better week. Take care. 

Imp xx

[hopeful1974]

@Fairie By the way, I am terrible without sleep so now have a routine of Lorazepam for the first 7 days and then I take Nytol Sleep and Calm Elixir each night after that. I know I can get back to good sleep unaided as I did it after my operation for 6 weeks, but during chemo I just need to be able to sleep and the steroids and other drugs really mess it up for me. 

[hopeful1974]

Dear @Fairie , I feel for you so much as I have been there when on EC. I have tried a few things differently this time and have had a much easier time of it although who knows which things have made the difference:

- I take two probiotic tablets each day (my oncologist okayed this) which help with my tummy and mood

- I have my 7 day supply of Lorazepam and take one each night before bed. It is a sedative, anti-anxiety and also anti-nausea so really helps me. 

- I started on SSRI Citalopram back in March and that has also balanced my mood and sleep

- I got to the point where I was feeling completely and utterly overwhelmed with it all and counselling helped me through that (I got some free from Macmillan and also from my hospital). The Macmillan counsellor gave me some great anti-anxiety strategies which I use still from time to time. I would be happy to share these if anyone is interested.

- My family had to make a massive adjustment to me being incapacitated and my mum and neighbours have been bringing round meals as cooking has been a challenge when I have been tired and nauseous. Sometimes, just the smell of what I was cooking would put me off! They are in a routine of looking after me now and that makes it all so much easier.

I found that all of these things help me enormously and I also have made it very clear to my oncologist that I need some quality of life during my treatment without compromising the outcome. He is being hugely supportive and tweaking things as we go. Ironically, my mental and physical states have been ok this time round but my bloods have told a different story. Off to hospital now. I really wish you all well and don’t give up hope that things will get better. This is such an incredibly tough journey but we are strong enough to do it! xxx

[Fairie]

Dear All

line Yvonne I’ve been struggling so not posted for a while.

I find every time I eat a little something I get a very painful tum and end up having to dash off to the loo. It’s painful and tiring. 
I went out for a short trip out to Sainsbury’s yesterday to get a few bits and connect with society and it turned into a mad dash home for the loo🤦‍♀️
My sense of smell is driving me nuts and it feels like everything stinks!! 

I either don’t sleep at all until early hours or I do sleep well. 
so I’m a bit down and dreading yet again cycle 3. Some days I don’t know how I will do the whole six.

I had FEC 14 years ago and it was horrendous and I keep reminding myself of that I managed it and can do this. Trying to stay positive but it’s also hard when feeling so flattened.

my oncologist messed around with what should have been a face to face meeting tomorrow at the local hospital 5 mins away and he cancelled it to a hospital an hour away for last weds right when I was in the worst week and could not leave my own bathroom. Then I had a call to see he had gone home sick but would call me from home. I waited for his call but as had not slept the night before I dropped off and missed his call. He told my husband he’d call back but I’ve not heard since so I need to try and find him. 

im really trying to stay steady and positive.. 

I send you ALL my love and positive thoughts xxxx Fairie ❤️

[Impatience]

Hi @simplyeve 

Sorry to hear you have struggled and I hope you have turned a corner and feel much better moving forward. 

@hopeful1974 

Hope your next session goes well and you have a good holiday. Certainly great weather for being by the sea!

@Louise65 

I will be thinking of you on Friday when we have our 3rd session - half way!!

Also wishing everyone else a good week. 

I’m on day 17 of my 2nd cycle of EC and physically it has been a good cycle with little side effects. However mentally it has been tough. I’ve worried about infection/hospitalisation and the future. I’m seeing the oncologist today so hoping to talk through some of my fears and get some of my normal positivity back 🤞. 

Take care everyone. 

Imp xxx

[hopeful1974]

@simplyeveCan I just ask how long you take the steroids for? Does the nausea start when you’re taking them or when you have stopped? For some reason I was given 5 days of steroids last time (8 tablets from day before chemo until day 2 and then 4 tablets on days 3-4). They helped enormously with any feelings of nausea I had but this time my oncologist said I shouldn’t have been given 5 days’ worth and should just take the first 3 days’ worth. I still had a little nausea on days 3-4 so hoping Domperidone will be enough! xxx

[hopeful1974]

Dear @simplyeve , I am sorry you haven’t felt that well this time round. I have a seven day supply of Lorazepam which is similar to Diazepam and it helps me enormously. I use it mainly to get sleep as I have always felt really hyper after the steroids and continue to use it after stopping the steroids until I have finished my injections as it just calms me and helps with my sleep. I then stop with that as my hospital won’t prescribe it long term and I use Nytol Sleep and Calm Elixir (an over the counter herbal remedy) instead which works very well for sleep and anxiety. I learnt that for me is anxiety definitely removes my appetite and makes me nauseous so those two anti-anxiety meds helped me a lot.

I suffered a lot with nausea when I had EC chemo and Ondansetron was the drug which was most effective for my nausea when it was really acute. It is strong and not everyone can have it but I found that it stopped the nausea in its tracks when necessary.

I really hope your team can get to the bottom of what is causing you to feel so unwell and try not to despair as they can tweak things as long as you keep on at them enough. 

I hope that your energy returns enough for you to make the visit to the wig lady and wish you all the best for your kidney function test. You’re a third of the way through and I really hope that with each cycle you have an easier time than the last one as they tweak the meds and doses if necessary. Sending love and hugs. 😘

[simplyeve]

Hello Ladies,

Sorry for the long absence, but once again I have found myself struggling to get through my treatment and in particular the last 5 days, though the lower dose has helped tremendously I have continued to suffer with Nausea and the cyclazine dose of 3 per day just simply wasn't enough.  Whilst I have avoided hospitalization I have had to get additional meds for my nausea and to be honest have found it a mental struggle too so have been given diazapam for days when I feel I cannot cope.  I had my bloods done on Thursday last week and they showed my kidney function was starting to decrease again, so I have desperately been trying to increase my fluids, the heat hasn't particularly helped, tomorrow I have to go for a repeat test, so fingers crossed that I have managed to do enough.  Today I am finally feeling like I am on the up so hopefully from here on I will be able to manage to get back to some sort of normality.

@hopeful1974  good luck with your treatment tomorrow and I hope you have a really lovely week away with your family. xx

@Trowster  I love the wig, I was looking at making an appointment with the wig lady in Chester too, but just haven't felt well enough to make the effort, seeing your photo's has inspired me to look again and maybe I can sort something out after my next treatment.

@JessicaB @Impatience @Flower123 @GonnaGetThruThis @Heels to walking boots @Louise65 @Fairie I do hope you are all managing to cope with whatever stage of your treatment you are now at.  

I have been logging in regularly and seeing your posts just didn't have the energy enough to summon a response, despite trying several times.  Despite being low, it has been really helpful to be able to read your posts and hear how everyone is getting on.  Take care everyone.

Much love to all Yvonne xxx

[Trowster]

hi hopeful, I really hope your reaction to chemo this week is as good as your last one, but as you are in a private house at least you can take yourself off to rest whenever it’s needed, and I hope you will all have a wonderful time away, I got out on the bike yesterday for 24 miles, and I’m also hoping to get out tomorrow, the fact he has delayed my treatment by 1 week has really benefited me, and I’m hoping I will be as good after the chemo as I was last time, no sickness, have a good week everyone and make the most of this nice weather, 

[hopeful1974]

How are you all? I hope you have had a good weekend. The days were a bit hot for me so I hid in the shade and cool rooms of the house, but come the evening yesterday it had cooled down enough for a bbq. Chemo day is tomorrow and then we are heading off straight down to Cornwall! I am wondering if I am mad, but it was meant to be a week after my chemo, which was then delayed. My first week after chemo last time was not too bad at all and we are in a private house, so I am hoping it will be fine. I think the change and break will benefit the whole family so much. I have been so full of energy today from the steroids that I am worried that I am wearing myself out as I just kept on going all day with shopping, ironing, packing. I still didn’t feel sleepy so have taken a Lorazepam to counteract the effets of the steroids. 

@Trowster did you get out on the bike? Your precautions with sun screen and nail protection sound great. I have taken to wearing cotton gloves now whenever I am doing anything around the house. I think that side effect is particularly bad with Docetaxel. 
Keen to hear how the rest of you are getting on, particularly my THCP buddies, Sharon @Fairie and Yvonne @simplyeve Have you both had your second doses now and if so, have you had a better experience than after the first dose? 
Lots of love to you all. Siân xxx

[JessicaB]

What fantastic pictures! The wig looks fabulous! Enjoy you day everyone, but take care in that heat…

[Trowster]

Hi Hopeful

this wig is so much lighter than. The one I had 13 years ago, I have had gel polish put on my fingers n toes in a dark shade, and so far so good, I also put a lot of moisturiser on my hands n feet before bed n wear socks n gloves n so far my hands n feet are really good, my own hair was very thick and I often got complimented on it so I was devastated to lose it again, I’m planning on going for a ride tomorrow with my sister n some friends my first ride since 27th June, but I will put lots of sunscreen on, don’t want to get burnt, glad you had a nice day n a pleasant chat to pass the time away xx

[hopeful1974]

@Trowster You look fantastic in your wig! I do find that I am in a better mood when I have mine on. I have also received way more compliments about my wig hair than I used to about my natural hair, which was quite thin. I spent the morning in hospital waiting for blood test, clinic and prescriptions, but had a good book with me and also struck up a conversation with a nice lady so it was not all bad! Your day sounds quite idyllic. I’ll be hiding from the sun tomorrow as it seems that Docetaxel has made my skin super sensitive to sunlight, which is what causes my skin to break out. I’ve also been told to wear gloves when doing household tasks as my fingers are getting sore around my nails. It’s not the worst side effect but I want to look after the nails so that they don’t fall off! 

I hope everyone else is fine and that you all have as relaxing a weekend as possible. xxx

[Trowster]

Glad everyone seams to be coping ok moving forward with the treatments, I think having done the first one we at least know what’s coming at us, I went for my wig today in Chester with my Sister,  then had a lovely walk along the groves to the Boathouse Pub, silly me I thought I would be able to get a drink, but no because I hadn’t booked we couldn’t get a drink, so we ended up at the lovely Moorings Cafe with a lovely Old Moot Fruit Cider, my Picc Line has settled down and stopped bleeding, but I’m going to nip to the ward on Monday when the Picc Line Nurse Practitioner is on duty, I’ve done more steps today than I’ve done in the past 2 weeks, but it was such a lovely day along the river, a lady in the cafe complimented me on my top and her friend said I just love your hair the cut is great and she wanted to know where I’d had it done, I felt fantastic as this was my first time out in the in wig, when I told her she said she was shocked, the bottom one was my natural hair, middle how I look now, n top one is one of the wigs I bought, 

[hopeful1974]

Hi all,

@Flower123 Wishing you all the best for this next chemo session. 
@GonnaGetThruThis Glad you are feeling ok and I think it’s a very good idea to ‘go with the flow’. It reduces stress!

@Trowster I hope your PICC line gets sorted. I don’t have experience of those as I have a port, so can’t say what is normal or not. 
I hope everyone else is ok.

I have heard at clinic today that my bloods are good for chemo on Monday. I had G-CSF injections for the last couple of days which always do the trick for me. For my next cycle, I will have the Carboplatin chemo reduced still further which they are hopeful will be enough to prevent my neutrophils from plummeting again. I will also be given two extra doses of G-CSF injections to take in case my bloods are not good enough at the next blood test. They seem to know what they are doing, so I am just trusting the process. So, we are still going to Cornwall. I had not planned to be away the week immediately post chemo, but last time I felt fine and I may as well be feeling tired in Cornwall as at home! xxx