cancel
Showing results for 
Search instead for 
Did you mean: 

May 2019 Start

141 REPLIES 141
Member

Re: May 2019 Start - picc line covers

Hi guys, hope everyone is having a good bank holiday weekend (or at least not a bad one!)

 

Has anyone listened to the 'You, Me and the Big C' podcast?  There is one called 'About the food' which I found really helpful, especially the myth busting information.  I quite enjoy the podcast anyway.  It's chatty and positive but doesn't shy away from the difficult topics. Although (just as a warning) you may want to avoid it if it will upset you that one of the presenters (Rachael Bland) died recently Smiley Sad

 

Well today I shaved my head 😣  The cold cap obviously wasn't working and I was leaving a trail of hair everywhere I went so I decided to go for it.  It doesn't look too bad I guess.  I'm probably a bit weird but I have a fear that my hair won't grow back grey! I got sick of dyeing it so grew it out a couple of years ago and absolutely loved my silver! (I'm only 44, but started greying in my early 20s).  I will be gutted if it comes back brown.  Oh well, it will be better than it not coming back at all ☺

Member

Re: May 2019 Start - picc line covers

Hi SP

Sorry to hear your 2nd treatment wasn't so straightforward but at least it's one more under your belt and fingers crossed for minimal side effects. 

That would be great if you could share any information you get from your consultation about natural remedies/supplements that might help. I've got my next chemo on the 4th June and see the oncologist on the 5th so I'll add it to my questions list! At the moment I'm just sticking to healthy eating, daily walks and have started to do some beginners yoga.

Take care and hope you have a good weekend

 

Love Rose x

Member

Re: May 2019 Start - picc line covers

Hi Dapple

Thanks for your shared info.

My piccline fitting was really well done too and very swift. It was irritating for about a week

but I barely notice it now.

I ordered some piccline sleeves from Annabanda yesterday as well. I got a blue, black and grey

one. They were £2.40 each. I also ordered a few hats. I have being using the cold cap but had a

lot of hair come out about 16 days after first treatment. It came out each day for 4/5 days following that.

I used the cold cap again on my second treatment last Wednesday (22nd May). I have to use the

small sized cold cap and when I got to the hospital for my treatment at 11am there were no small sized

caps (there was only one). I had to come back at 2pm which was difficult as you get yourself psyched up

for it. It was a really sunny day so my daughter and I had lunch in the sunshine (shaded for me) so it wasn't so

bad.

My hair has really thinned and I ordered the hats so my scalp won't get burnt on the sunny days. I

am going to persist with the cold cap. I was diagnosed with coeliac disease in 2012 and by the time I was

diagnosed I was malnourished so my hair really suffered then. Since the diagnosis and having a gluten free

die,t my hair over the last 7 years has grown to shoulder length and was looking really good. My hair grows slowly

so I suppose that is why I am persisting. I have been told it is the red drug, epirubicin in FEC-T treatment that

causes the hair loss and I have one more of those to go before switching to docetaxel. I will see.

I hope you and everybody else is coping well given our regime.

Mominette Smiley Happy

SP
Member

Re: May 2019 Start - picc line covers

Hi Rose, 

 

I have also been investigating supplements and ways of helping my body naturally, as I’m very into heathy eating etc. I have been told ( for what it’s worth) that although turmeric is a good anti oxidant you would have to consume large quantities for it have this effect? It’s also very important that you don’t take anything which could work against the chemotherapy. You need to check any supplement with your oncologist. 

 

You may be interested to know that this week, I had a private telephone consultation (as he’s based in London) with a cancer specialist who is also a qualified naturopath and who believes that an integrated approach really helps support the body through chemo and beyond. I didn’t just randomly  “find” him!! He was highly recommended by a friend, who is a qualified herbalist. I know this line of investigation is not for everyone, but I want to at least consider every option to help my body cope naturally. All recommendations would, of course, have to be discussed with my oncologist. The consultation took 90 minutes so was very detailed. I await the report and recommendations!! I’ll let you know if it’s useful, if you’re interested?

 

I had a very traumatic 2nd chemo treatment yesterday. My appointment time  was “cocked up” because the scheduler apparently changed it to an earlier time but didn’t inform me! So, when I arrived at my time, I was “lost” in the system and then forgotten.  I waited over 2 hours, getting very stressed and anxious that they wouldn’t treat me at all. In the end they did, but the nurse, who was lovely, couldn’t get the cannula in. Two different veins “blew” and it was really painful. I had heated my hands and wore gloves whilst waiting but the wait was so long, this was a waste of effort. A more senior nurse was called and he calmed me down and got the cannula in first time. It seems that stress and adrenaline can constricted the veins....and I had a lot of that going on!!!

 

However, I’m pleased to report that once the treatment started, it all went smoothly. I was exhausted when I got home and didn’t sleep great...but am ok today!!! Let’s hope it lasts!!! 

 

SP

xx

 

Member

Re: May 2019 Start - picc line covers

Morning all

So pleased to hear your mams good news Kelly. You are going through it doubly worrying about your mam as well as yourself xx

Thank you again for all the hair loss advice it's been really helpful.

Just wondering if anyone was taking any supplements? I know there are lots of ideas out there on the internet but was looking at tumeric as it's meant to be a really good antioxidant. I thought I'd ask at my next hospital appointment before starting though. In the meantime just trying to eat healthy and walk a bit more athough I must admit now that my appetite has improved I have had a few evenings on the sofa with chocolate and a glass of wine! 

Take care everyone 

Love Rose

Member

Re: May 2019 Start - picc line covers

Kelly

 

So pleased for your Mum, it must be a bit of a relief for you all, not that radiotherapy is a walk in the park but it's better than having to have chemo too. How great is your son shaving his head to support you, you must be so proud of him.

Glad to hear work is working for you at times I wish I was at work but at others I'm grateful for only having myself to concentrate on during the day, I'm also secretly enjoying being a stay at home mum for the first time ever, making sure tea is ready for when they all get home - its such a novelty but will soon be over so i'm going to enjoy it whilst I can.

 

Wishing you all a more relaxed bank holiday weekend

 

Joemic x

Member

Re: May 2019 Start - picc line covers

Good evening ladiesSmiley Happy

What a busy thread it has been today. It's great to hear that on the whole most people are feeling well in themselves but not so good for those that aren't.

 

SP - I'm with you in that I get very nervous the day before my chemo is due, I guess it's something that will happen each time as we worry how it will affect us. I saw those fringes and am still toying with the idea, I actually quite liked the ones that have the hair that goes all around a hairband, have you seen them too? do you think you might try them?. I hope your chemo has gone well today and you don't end up with a nasty sore mouth this time.

 

Rose - My hair started falling out around day 15 and the majority by day 18 when I had it cut short, I'm day 29 now and still have a fair amount left. I think when the majority fell out it helped me come to terms with the fact I was going to lose it rather than constantly looking for signs of hair loss prior to it happening. Don't worry you will get through it when the time is right for you, until then you can pick up lots of tips from those of us who are dealing with hair loss at the moment.

 

Mominette - We're entitled to be 'bad' with our diet sometimes - says me who ate 4 bags of crisps todaySmiley Frustrated, never eaten more than 1 before. Seem to have had a 'eat loads' day today particularly savoury stuff. Strange really as my favourite naughty stuff is ice-cream.  Fluid retention is very uncomfortable so glad to hear you are feeling better today.

 

Dapple - Great info on picc line covers, there seems to be a lot of ladies who have them fitted. I think Annabandanna is cheap for a lot of chemo things, I like their sleep caps, postage is reasonable and they do post it out first class which is great as I don't like having to wait for ages for my things to arrive. 

 

Mangomum - Fantastic news you are no longer neutropenic, boy I bet you are relieved. Lets hope it's smooth running from now on.

 

Ilovehunny - Hi and welcome to the forum, sorry to hear you have had such a rough start to your treatment. Like Mangomum says the injections to stimulate your white cells can cause lower lumber and pelvic area pain. I was troubled by the lower lumber pain after my 3rd injection but it responded to regular paracetamol and cleared up the day after my last injection. You might need a change of anti sickness drugs if they are not working for you, many people have had to change theirs until they find one that works for them. Don't let them put you off, if you think you need different meds push for them, chemo is tough enough without putting up with side effects we don't need to.

 

Sewbuddy - I went on one of the hair loss sessions where they showed me how to tie some basic headscarfs - it seemed easy at the time but by the time I'd got home I'd totally forgot how to do itSmiley Frustrated, I have had a few sessions following you tube but not very successful as yet - the positions I end up in would be more suited to the karma sutra rather than the elegant poses those ladies seem to manage whilst they're tying themSmiley LOL - the you tube tutorials are a work in progress. I also considered the look good feel better but it seemed to be more about make up, which I don't use so didn't think it would be relevant to me. If you do decide to go you'll have to let me know if they do anything apart from make - up.

 

Hope you all have a lovely bank holiday weekend.

 

Joemic x 

Member

Re: May 2019 Start - picc line covers

Hey ladies

 

just back from my 2nd EC, feel fine, just a little tired. On wed I braved the shave, it really is quite liberating, my son also shaved his hair, bless. As you know I have continued to work through my treatment, I actually worked over 6 hours a couple of times. For me personally, it keeps me mentally stable. And keeps the mind active. I also play games on my iPad to get the brain working.

 

Had some really good news, mums bc hasn’t spread. And she only need rads once a week for 6 weeks, to start in about 6 weeks time, when she has healed. She has been really down, but I think the news today as, hopefully, upped her spirits. 

 

Welcome to all our new ladies.

 

I brought PICC line covers from annabandana. They are 2.40 each. I went for medium, but needed small. They are quite big. I have also brought from amazon, gotta love prime, bandanas.  You get 6 different colours and designs, they are really lightweight. I used a black one has a base, then out a colourful one over the top. Haven’t braved going out without yet, might try over the weekend. I have decided not to get a wig, for me, I think it will be too hot over summer.

 

Hope you all have a lovely weekend 

lots of love 

Kelly xx

 

Member

Re: May 2019 Start - picc line covers

Happy bank holiday weekend!

 

After spending the first week checking hair loss almost hourly, I have relaxed more now and have my wig and scarves ready, great tips about the You Tube tutorials and the Velcro fringes, as I do not look like the sophisticated models when I try to tie the scarves I look like Mrs Tiggywiggle!

 

I find the periods of waiting quite hard, and I am interested that some of you are managing to work, my GP seemed very concerned about this option, and advised not too. I assumed that this was standard but obviously not, I suppose it depends on the type of work etc, mine is quite a commute which would be a bit of a drain.

 

SP, sending all positive vibes for an event free treatment, you sound very prepared and sending lots of love and hugs to all.

 

love Ruth xxx

 

 

Member

Re: May 2019 Start - picc line covers

Hi, thank you all for your warm welcome xx I hope all goes well for you today SP, I totally understand your anxiety but hope you find some peace and calm - another step forward xxx Bananabrain - I too have not been so bad, I am trying to work full time through this journey but unfortunately had to take 3 days sick this week witha 24hr upset stomach followed by a day of total exhaustion. Feeling back to normal now, thankfully. Xx Joemic, it's difficult when we see our kids struggling - I hope he was able to do all his hard work justice. Your fantastic positive attitude must help him.  On the subject of headcoverings and hair loss - I lost a handful of hair on day 5 but nothing since. I had my hair cut short yesterday and I ordered a selection of different scarves, beanies etc from Wish really cheap but took a while to come through. I was given a Macmillan leaflet too about 'Headstrong' - group or 1-1 sessions where they help with all aspects of hair loss etc. Another thing I am going to book in for is a pampering therapy session with Look good feel better. www.lgfb.co.uk  Again run in my local Macmillan centre.

Mominette, so glad you have 'deflated', that must have been a bit scary.

 

I wish everyone all the best and  hope there are no more bad reactions to spoil the Bank Holiday weekend for youxxx

Member

Re: May 2019 Start - picc line covers

Hi, 

 

Are you having injections to the tummy to stimulate white cell as these can cause pain in the lower back /pelvic area as the bone is being  stimulated. I've had a couple of extra ones now in hospital and I definitely feel achy in my lower back /limbs after.

 

Hopefully it will resolve itself once the treatment is over. 

 

Mangomum xx

Member

Re: May 2019 Start - picc line covers

Mangomum firstly, brilliant news that you've overcome the neutropenia. Such a shame that it was the picc, and hopefully you will be able to have another. I'm sure you already know there are other options too if that won't work for you. Onwards and upwards Love Dapple x
Member

Re: May 2019 Start - picc line covers

Hi all,

I had my first chemo (FEC) on 16th May.  Didn’t have a very good start unfortunately. Had terrible diarrhoea and sickness almost immediately ☹️ despite anti sickness drugs.  I’ve been a bit up and down since then but am definitely feeling more ‘me’ now. The only thing that’s niggling me now is awful lower back pain. I got my period 2 days ago so it could be linked to that but I don’t usually get it.    I had a blood test to test for suspected infection but all was ok but my neutrophils were exceptionally low-told to keep an eye on my temperature.  

 

If if anyone else has had similar side effects I’d love to hear from you. I think they think the diarrhoea was down to nerves or a tummy bug but it definitely wasn’t.  

 

Wishing you you all a lovely weekend.

 

 I 💕 🍯 

Member

Re: May 2019 Start - picc line covers

Hi, 

 

Unfortunately it looks like the picc line is the culprit. It did take quite a few attempts to get it in and there is a waver you sign to accept infections are possible. I don't regret having it and hoping I can still keep it once the infection has resolved. Good news is today I'm no longer neutropenic!! So moving in the right direction.

Mangomum xx

Member

Re: May 2019 Start - picc line covers

Mangomum & Mominette it seems you've both been really unlucky with reactions/infection on your first rounds. Like you said, hopefully drug reactions will be sorted for the next round. I think with infections we can all be as careful as possible...but unless we're prepared to live in isolation (no way!) for months of precious time, then it's also a matter of luck.

I wanted to share some info on picc line covers with everyone (will also add to top tip thread): I had a picc line put in this week (I won't lie, it's annoying so far, but I'll get used to it. For anyone worried about the procedure itself, it was over before I knew it and painless). So I thought I'd be organised and ordered a Care+Wear picc cover - they are antimicrobial so I thought the expense was worth it. My opinion? Waste of money - I ordered the correct size for my arm but found it quite difficult to get on and off. Ordered a few cheap (2 quid!) but pretty patterned covers from Annabandana - and they're so much better! More comfortable and easy on and off. Oh also bought a limbO for the shower - brilliant but tricky first time on my own - think this was more a  confidence issue though. I'm certainly no picc line expert, but happy to answer anything about my experience so far.

Love Dapple x

 

Member

Re: May 2019 Start

Hi, 

 

I had very little side effects from the Fec and was coping OK - even out for a walk the day my temperature spiked. I had a very red face, but I think that was the steroids. Easting hasn't been too bad.  Plane food for the few days after. Back to eating pretty much anything this week without any ill effects /nausea. I have tried to be good and only succumbed to comfort eating on a couple of occasions. Hopefully they will get to the bottom of all our issues so we don't face them next time.

 

Mangomum x

Member

Re: May 2019 Start

Hello again Mangomum

Yes it is hard on you that you hit a hurdle first time round.

Did you manage to eat well during your first round of chemo?

I have been eating lots of fresh  fruits,veggies, brazil nuts, almonds, dried apricots.

I am sure you are already doing all these things. I have also been very bad

on some occasions and eaten cake, ice cream and biscuits!!! One night I ate a

tub and a half of HD salted caramel ice cream! I was ashamed of myself and 

won't be doing that again!!! 

I deflated yesterday of fluid so I am actually feeling a lot better. Kick off with the

injections later today. As far as I am aware they didn't alter any of the doses of

anything. Not sure if they just ran more saline through. I have an appointment with the

oncologist on 06/06 so I will mention it then.

Did you bother with the cold cap?

Have you been discharged from hospital yet?

All My Best Wishes

We will soon be through this.

Mominette x

 

 

Member

Re: May 2019 Start

Thanks for the turban info Bannanabrain

SP
Member

Re: May 2019 Start

Hi ladies

 

Apologies for my typo!!! The fringe idea should have said “top tip”?! I blame chemo brain and predictive text!!

 

I also meant to to say that the doctor has changed my anti sickness meds, so I’m hoping the volcano stomach will not happen this time. I’m also being given Difflam spray which contains anaesthetic, in case the mouth problems recur. So, I’m armed with this and my salt water mouthwashes just in case.....let’s hope I don’t need it?! 

 

SP

xx

Member

Re: May 2019 Start

Morning ladies

Thanks for the info about scarves and hats I've finally had a look on Amazon after avoiding it for ages. My lovely sister has ordered me a few bandanas and hats but I've not even looked at them yet as the looking different bit really worries me! 

I've had my hair cut short which I'm still getting used to and have made an appointment to get a wig in a few weeks so I'm keeping fingers crossed it stays put until then!

Good luck to everyone having treatment today

Love Rose x

SP
Member

Re: May 2019 Start

Welcome to all new ladies from me too! I started the May thread so it’s good to know that we can help each other. Mangomum I’m  so sorry that you were hospitalised. This must have been very scary and upsetting. 

 

I’ve had a good week with daily walks and some normal living!! I’ve clocked up 33 miles this cycle so the doctor was impressed! My chemo log was also praised for its detail?! 

I lost my hair last Monday. It was falling out at an alarming rate so I asked my husband to shave my head as I couldn’t cope with the hair falling everywhere. I have a wig and also a selection of bandanas and hats. My tip fit today is that I bought a fake fringe! It Velcro’s under the scarf so softens the look...less chemo look?

My anxiety levels are high today as it’s my next chemo. It’s strange that as soon as you start to feel normal, you’re slapped down again?!

 

SP

xx

Member

Re: May 2019 Start

Re: headwear, sorry ladies forgot to mention there are loads of videos on you tube on how to tie turbans etc. There are lots of scarfs on amazon and ebay if you want to have a go. Look under hijabs.

 

Member

Re: May 2019 Start

Hi Louise, the turbans are from Amazon.  I'll let you know what they're like when they arrive 😊  I'm having problems posting the link but they are by Ever Fairy and Zac's Alter Ego, both on Amazon.  I just searched for vintage turbans.

 

Member

Re: May 2019 Start

Hi Bannanabrain

 

I like the sound of your vintage turbans - please can you let me know where you got them from.  Thanks

 

Louise

Member

Re: May 2019 Start

Hi Sewbuddy and Rose - welcome to the forum none of us really wanted to join but hey here we all are and will be plodding along with each other, keeping us all going as best we can. I wouldn't worry about stalking for a while before joining, I bet we all did before we took the plunge to say hi, I know I didSmiley Happy. At least you can both start counting down - you're both one down so one less to goSmiley Happy, it seems a long slog but we will all get there, I'm 2 down now but thinking positive this time next month I'll be 4 down and only 2 left whoohoo, just got to get there firstSmiley Very Happy

 

Mangomum - You really are going through it aren't you, it's heartbreaking losing a pet, sending you lots of hugs to help get you through. I hope your hospital stay is sorting you out and you'll be home soon.

 

Mominette - What have your chemo team said to you about your reaction? It doesn't seem at all right to me, make sure you follow all the advice they give you - you can't be too careful. With any luck the rest of your regime will be plain sailing - have my fingers crossed for you.

 

Bananabrain - Like you I started to lose my hair on day 15/16 (Sat) by the following Tues what I thought was the majority of it fell out so I had it cut to a grade 3, strangely although some still seems to be falling out every day I've still got a head of hair, albeit thin in places but no bald patches - I got my son to check it because it looked as though a thick band across the top was bald - he laughed and said my hair had actually turned white!!! I don't know what's worse grey or snowy whiteSmiley LOL. I've got a variety of headwear, wig, headscarf, beanie, turbans and bucket sunhats in funky SPF50 colours. I change what I use daily and just like  to wear jazzy colours - it's my way of showing the BC where it can goSmiley Very Happy. Must say I'm not very good at tying the headscarfs yet but it's fun trying and I've just got myself a pink wig to wear when I go out, I'm determined I won't let the BC rule my life. Anyway after all that rambling what I meant to say was maybe give the cold cap another go if you can bear it, you might still lose hair but maybe not all of it or you can decide not to and embrace your new look, it's still a tough decision for you. I chose not to cold cap which is why I'm a bit confused as to why I still have as much hair - I don't know maybe it will have all fallen out by my next cycle. It's all very strange this chemo thing and individual responses to it isn't itSmiley Frustrated. Good luck with whatever you decide.

 

Ruth - I don't think he did as bad as he thought he would but his heart is on uni and it's hard on him especially since he didn't get the grades last year. He finds it harder because a lot of his mates who got into uni aren't really bothered about being there and tell him so; it upsets him because he dearly wants to be there. We'll get him through it though - just wish I could take his darned nerves off himSmiley Sad. Hope you are not finding your treatment too trying and are managing well

 

Joemic x   May Ladies - We've got thisSmiley Happy

SP
Member

Re: May 2019 Start

Hi all, 

 

Welcome to all our new members from me too! I am so sorry to hear that you have been hospitalised, Mangomum. That must have been very scary and upsetting. I hope that your white cells soon bounce back. 

 

I’ve had a good last week of cycle 1. However, my hair has also fallen out at an ever increasing rate. Yesterday, my husband shaved my head as I couldn’t cope with it any longer....hair falling everywhere! I’ve worn my wig and also have turbans and bandanas.....so I  can choose...... the soft bamboo hats are a lovely break from the wig, which can get hot after a while. One tip to share is that I’ve also bought a Velcro fringe!!! You can velcro it to the inside of the hat/ bandana etc and it takes away the bareness and “chemo look” It looks more natural to have some hair on my face....

 

Today I have had blood tests and my clinic appointment. I took my chemo log and was praised for its detail!!! I’ve walked 33 miles over the last 20 days....so not bad!! The oncologist has changed my anti sickness meds so I’m hoping that I’ll avoid my stomach erupting like a volcano this time. I’m also going to have Difflam mouth spray, in case the mucositis flares up again, as it apparently has anaesthetic in it! So I’ll be ready this time with my salt water mouthwashes and Difflam! 

 

So, my 2nd chemo is tomorrow and I’m feeling anxious again. It’s strange how life can almost feel normal, then just as it does, you know that you will be slapped down again.....? 

But, after tomorrow, I’m one step closer to finishing this phase...hurray! 

 

SP

x

Member

Re: May 2019 Start

Hello All

This is my first post. I am also a May 2019 chemotherapy starter. I had my first cycle on the 14th May (1 down 7 to go! )Just reading through all the previous posts have already helped. Thank you for the link to the life after Lola website I've tried to avoid reading anything other that what the hospital gave me until now but found this to be a big help especially around feelings and coping mechanisms. I look forward to following everyone's progress and will share anything useful I come across 

Thanks

Rose x

Member

Re: May 2019 Start

Hi Sewbuddy, welcome to the May group.  I hope it helps you being here.  I am on FEC-T too, just started a few days before you.  Have not found it too bad so far.

 

Mangomum - I'm so sorry to hear about your cat.  Pets are such an important part of our lives.

 

Two weeks after first FEC and my hair has started falling out Smiley Sad  I used the cold cap but I'm not sure it did anything as every time I touch my hair more falls out.   Don't know whether to bother for my next cycle.  On the first morning with hair loss I gave my daughter a lift and on the way happened to see a very stylish lady (in her 30s I would guess), very trendily dressed wearing a lovely turban.  I saw it as a sign and have ordered myself a couple of cute vintage turbans.  I'm looking forward to them arriving.  I figured if I'm gonna be bald I need to just style it out Smiley Happy

Member

Re: May 2019 Start

Hi May Ladies,

I feel a bit of a stalker as I have spent a day reading through the thread! I had my first FEC-T on 13th, I was determined to sail through and not let it get to me, how naive 😁. I have taken great encouragement from reading everyone's reactions and tips etc. Sorry to read that you had to stay in hospital Mangomum, fingers crossed for a swift recovery and how sad to lose your cat at the same time Xxx 

Member

Re: May 2019 Start

Hi, 

This was just my first round so not boding well. Sorry to hear you are having a time of it too! Did they increase your steroids this cycle or change anything? It sounds like a reaction to and hope you have got some advice on what it is /should do.

 

Mangomum 

Member

Re: May 2019 Start

Hello Mangomum

Sorry to read about your cat on top of everything else.

I hope you are managing to keep your spirits up.

I had my 2nd FEC cycle yesterday. I have blown up like a puffer fish - hands, face, legs swollen up.

Hope you are soon able to resume treatment. Have you had 1 or 2 cycles so far or more?

Best wishes

 

Mominette

 

Member

Re: May 2019 Start

So sorry to hear about your cat Mangomum.  Sending love and hugs

Louise

Member

Re: May 2019 Start

Hi ladies, 

I'm still here but my blood count is going up. I need to get to the magic number 1 to be released. On a very sad note my beloved ragdoll cat had to be put to sleep today. She had been unwell and took a turn for the worse. Feel really upset that I couldn't give her a kiss goodbye 😢. It has just made my stay even more miserable but at least she isn't suffering - which was making me more anxious.

 

Love to you all and I will get round to replying to some posts just totally deflated today. 

 

Mangomum 

Member

Re: May 2019 Start

Hello everyone 

 

Mangomum, hoping you are improving and comfortable. Do they think you will be home soon?

 

Joemic, I hope the exam went well today. Given the confidence last week, I hope once he got in there it all came back.

 

Louise, I found the first injection a little worrying but if you squeeze an inch quite hard so the needle has a firm surface, its not too bad....good luck.

 

sending love to all

love Ruth xxx

Member

Re: May 2019 Start

Thank you Hannah Lizzie for the info.

 

How often do you have to have the injections.  I've been told no help, will have to do them myself - eeeek.

 

Do you have steroids too - if so any side effects.

 

Many thanks

Louise

Member

Re: May 2019 Start

I have just seen my name be mentioned! I am more than happy to help/ talk about my experiences of this regime. 

I am half way through now, coming up for cycle 4 on 3rd June. 

All I can say about this cycle, is that I’ve been very tired and shaky. Everyone responds different to chemo, but my body seems to have slowed right down since starting the chemo. I would say I feel the lowest during my first 10 days, then the remaining 11 are usually ok. I try and laugh most days, as I’m grateful it’s being treated and could be a lot worse. 

The regime made me feel very sick and have the runs the first 2 cycles, but my tablets have all been changed this time, and I haven’t had anything! Be prepared for the white blood cell injections, a district nurse can give them to you, but I inject myself. The needles are only small! 

I thought I would mention, I am also on Herceptin and Perjeta every cycle, so some side effects could also be due to these. Hence, everyone is different and responds differently.

Good luck x

Member

Re: May 2019 Start

Hi Louise, I'm not sure on this thread but a lady called Hannahlizzie21 (i think that's her name) on the April 2019 thread is on the same as you, she maybe able to help you with specifics, I'm sure she wouldn't mind helping you.

Mangomum - I hope you had a comfortable night - you've got thisSmiley Happy

 

Stress city in my house this morning, A level exam, bless him he suffers severe exam anxiety, he's a very intelligent young man but unfortunately folds during exams, he's done an extra year in 6th form to resit to raise his grades from B's to the A's he needs for uni, he's done really well, very confident last week but last night the anxieties kicked in and he's a mess this morning. I'm just hoping he can hold out 7 hours revising every day for months has got to help.

Anyway ladies I hope everyone has a comfortable side effect free day.

Joemic x 

Member

Re: May 2019 Start

Hi

Had my first onc appt today.

 

I'm going to be having Docetaxel and Carboplatin.  Anyone else on this regime?  Any tips, comments, advice - many thanks.

Member

Re: May 2019 Start

 

Hi, 

I saw the lead chemo nurse yesterday and mentioned it so they are aware. She thought it might be the start of the menopause that chemo can bring on. It is tapering off now so hopefully it will stop soon.

She also said the infection was probably there since the line was inserted but as my white cells dropped my body couldn't stop the infection. 

 

Mangomum 

 

 

Member

Re: May 2019 Start

Oh Mangomum so sorry to hear you've ended up in hospital but at least they will take good care of you and make sure you're properly ok before discharge. Maybe mention you're heavier menstrual bleed (even if it's stopped now), you might as well since you are in there, get everything all checked out at the same time and fingers crossed you'll only have the one inpatient visit.

Take care, get the rest you need, sending you lots of hugs for a speedy recovery.

 

Joemic x 

Member

Re: May 2019 Start

 

Hi May ladies, 

I'm in hospital 😭. Started to get a rapid heart rate and feeling warm yesterday aftenoon. Took my temp and it was 38.2 so ended up at A&E. On the ward  since last night  and wil be kept in for 48hr observation minimum. The infection has arisen from my picc line which is unfortunately quite common. I'm being well looked after and getting all the antibiotics and fluids I need so fingers crossed I can get over this ASAP.

 

I'll have time to read through all your posts at least while I'm here. 

 

Mangomum 

Member

Re: May 2019 Start

Hi Louise

Hope your appointment went well and you finally know your treatment plan. I think it's a relief in a strange sort of way to finally feel things are moving. I'm sure you'll pick up some good and useful tips as you look through the posts.

I've been much better today but I did learn from yesterday and made sure I ate regular and drank plenty. Back to the Zarzio injections tonight.

Hope everyone has had as good a day as you can and enjoyed your day.

Joemic x

Member

Re: May 2019 Start

I have my first appt with onc in the morning.  Strangely looking forward to it !?!

Keen to find out my treatment plan, what drugs I will be given, and how often.

 

 

Member

Re: May 2019 Start

Good evening ladies

 

Jeeze Kelly, you sure do have it tough at the moment and with your determination I am sure both you and your Mum will battle through this incredibly difficult time. I'm glad you are finding work a good distraction and it will help boost your mental wellbeing - just remember to have a bit of me time!.

 

I was a bit daft today and suffered the consequencesSmiley Sad. I was so busy getting kids off to school, and taking one to stay at a relatives that I totally forgot to eat and only had one small drink this morning. I wondered why I began feeling very grotty by 2pmSmiley Embarassed, when I finally realised it took me a while to get myself rehydrated (I can't drink a lot at a time as it makes me sick) and suitably nourished. Feeling fine again by 8pm. Lesson learnt I will not be missing out on fluids or meals again - well not until after all treatment has been completedSmiley Happy.

 

Ruth I remember catching the pokemon, one day the 2 youngest had hubby looking in the bushes at the local pub to catch them - luckily everyone knows himSmiley LOL. At least that was an outside game, trying to unglue them from phones, xboxes etc is a feat in itselfSmiley Frustrated

 

Wishing everyone a relaxed and comfortable evening with no pesky side effects

 

Joemic x 

Member

Re: May 2019 Start

Dear All

 

Kelly, I am so pleased you are feeling better after your tough weekend. I’m so sorry to hear about your Mum as well, this must be a really difficult time for you all. You do seem to have the most amazing resilience which is what will get you through it ( and us to support where we can).

 

Joemic, you are 2 down and going strong.  I ‘tasted’ metal the second they started using that one, and someone suggested fruitpastles ...but I think mints would be better as they would last longer, so will take some next time.

 

The walking really helps me too (it does help that we have had reasonable weather since my 1st treatment I think I would find this even harder in the winter months. I have 2 young boys who are always up for a walk (providing they can ‘catch’ pokemon enroute😊)

 

45 mins is very good Mangomum, I hope this is still helping you.

 

I hope everyone else is side effect free (mininimal) at the moment and feeling as positive as possible. 

 

Lots of love Ruth xxx

Member

Re: May 2019 Start

Hey everyone, and welcome Mangomum. 

Had a bit of a **bleep**e weekend, really bad headaches, will speak to chemo nurse this Friday. 

Today is the 1st day, I actually felt normal !! Managed 6 hours at work today, yippee. It really does make me feel better about everything. What I haven’t told you lovely ladies is, my mum also has breast cancer. She had her 2 lumps for many years, and didn’t say or do anything about it 😥😥.She became ill on Xmas eve, very breathless, had chest X-ray, and that’s where it all begins. She also has a incurable blood disorder, MF, which is managed every week, with blood and platelet transfusions. She was put on oral chemo, but it burnt her skin. She had a single mastectomy on 9th May, and is doing really well. If only she would eat more though!!! So as you can imagine, my life is quite hectic at the moment. I need to show her that, if I can do this, then so can she. She is lucky that she has my dad to look after her, if any of you read my previous post, I sadly lost my husband 3 years ago, but am lucky that I have my son, Josh to look after me (not that I need looking after, lol). 

 

Sending you all my love

Kelly xxxx

 

ps, am getting my hair shaved on wed xx

Member

Re: May 2019 Start

Glad you are finding walking beneficial, being out in the open air is good even if it is for a short while. A tip my chemo nurse gave me, quite sternly really when I said I walked for 3 miles a day, was to make sure I took some water with me and had a sip regularly, helps stop you feeling woozy apparently. I didn't admit that it never crossed my mind to take any.....note to chemo brain to remember to take some tomorrowSmiley Happy.

 

Whilst I remember another tip I was given, before my chemo started was to suck some mints whilst having the cyclophosphamide part of the chemo apparently some people get a metal taste in their mouth during this and found sucking mints helped. I've done that and can say I didn't experience any after taste of any description - can't definitely say it was the mints that worked and can't it was a side effect I wasn't going to get any way but no matter, I will continue with the mints and hope I never get the metal taste!.

 

I'm pleased you think I write beautifully Ruth but the truth is is takes me ages to write a postSmiley Embarassed but I get there in the endSmiley Happy. I find this thread helps me deal with the depression I'm battling, being able to chat to people who 'get' where you are and how you feel as we are all in it together and hopefully I'll be helping others through it tooSmiley Happy

 

Keep going ladies, we will get through this

 

Joemic x 

Member

Re: May 2019 Start

Hi SP,

 

Took inspiration from your post and got myself up and out for a walk this afternoon around the local common. Felt a bit woozy - but definitely doable so will try and get out every day even for 45mind (that's all I could muster).

 

Mangomum xx

SP
Member

Re: May 2019 Start

Hi all...

Welcome Mango mum. I’m also sorry that you have the dreaded cancer but we are all in this together so let us know if you need our shared expertise....it is growing by the week!! I’m pleased to read that you’re all coping well!! That’s great!! 

 

I am pleased to report that my mouth is calm and pain free so I am able to eat normally!! I’ve had a good week and have managed to do some “normal” things! My garden is planted with summer bedding (even though I had to have a lie down after I’d done it!?) I even went to sing with my a cappella choir on Wednesday. Again, I was exhausted when I got home but I was very pleased with myself for doing it. Singing is definitely good for the soul and I recommend it. Singing in 4 part harmony unaccompanied is challenging but great fun!! 

 

I’ve also walked every day....I’m managing 2/3 miles so I think that’s ok? I definitely feel better after a walk amongst the trees!! I often sing whilst walking?! Mad or what??!! It’s very good for the brain! I’m also following a mindfulness programme so am keeping a gratitude journal. I find that this helps me stay positive, which I firmly believe is half the battle in winning through? You may all now think I’m mad but I will do anything to help myself which does not involve taking drugs?! It’s about taking control.....good for my well being!! 

 

My 2nd  chemo is on Friday, providing my white blood cells are ok on Thursday... 

 

SP

x

Member

Re: May 2019 Start

Dear all

 

I hope everyone is having a reasonable weekend.

 

Joemic, I am so pleased you are 2 down, and still feeling positive, you are a real inspiration 😊. Also your chemo brain doesn’t interfere with your ability to write so beautifully. I was surprised that I struggled with going on the computer/tablet or even watching TV for the first couple of days after the treatment....I used podcasts which were great.

 

Hello Mangomum - sorry you are here, but hopefully it will help you ....it has helped me.

 

sending lots of love to all 

 

xxxx