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Starting chemo May 2014

fowey
Member

Re: Starting chemo May 2014

Hi barbersdrove,

 

Like you, I had my haircut short in a really spikey style and my hubby prefers it and says it has taken years off me ! I am not going the wig route at the mo, only because I will be having chemo for 6 months and I am trying the cold cap first and didnt want to spend on wigs until I know whether it works for me or not. I didnt really want to wear a wig in the summer as my head is very hot anyway and I was worried it may get itchy but thats just me.

I also went and bought all suggested things in readiness, then trotted off to hospital with my hair conditioner but no brush and no cardy as cold cap can make you feel cold bodywise. Again thats just me as I am scatty, a brush was prob obvious but not to me when my brain isnt functioning at full capacity as there is so much to think about 🙂

First chemo ok for me nurses were lovely and very calm environment. Just stayed home today as I wasnt sure how I would be feeling, but feel ok, a friend has spent the morning with me.

 

Good Luck with yours xx Ruth xx

fowey
Member

Re: Starting chemo May 2014

Sodastream,

I hope you are out of hospital soon and first session of chemo went well nurses lovely. good luck with yours xx Ruth xx
fowey
Member

Re: Starting chemo May 2014

wax2014,

 

So sorry to hear of your dad and having to contend with that loss as well as your chemo.

 

Hope all goes well with both, my first session was very calm and the nurses were lovely. No side effects so far for me after my first session yesterday.

 

Love xx Ruth xx

fowey
Member

Re: Starting chemo May 2014

Hi gmc,

 

I am glad we have helped allay your fears, I feel ok today,just eating bland food to be on the safe side and drinking loads of water. No nausea yet, but I am on 3 anti sickness drugs which I have been told to take whether feel ok or not to stave off anything I guess. Slept ok and the only thing that is strnage which I was warned about was red wee which will stop soon 🙂

 

Hope your first session goes ok, will be thinking of you xx Ruth xx

fowey
Member

Re: Starting chemo May 2014

Hi Climbing Rose.

 

I also didnt find the portacath fitting very pleasant. Like you I was sedated but awake and hidden under a blue blanket and could hear all that was going on. Also I felt more sore after that insertion than I did after my op !!

I had my first fec session yesterday,was very nervous, but honestly, the nurses couldnt have been nicer. It was very calm and they wer eplying me with drinks and offering biscuits and food .

 

I did try the cold cap, if you can bear the first 10 minutes your head just goes numb and it wasnt too bad.

 

I have been given alot of anti sickness drugs and been told to take them whether I feel ill or not.So far I slept well and have been eating pretty bland food such as pasta and soups, toast and felt okay.

 

I hope your first session goes well, we are all rooting for you here ! xx Ruth xx

fowey
Member

Re: Starting chemo May 2014

Hi ladycroft

 

Ladycroft, I had a good nights sleep and so far with all the anti nausea drugs they have given me to take whether I feel ill or not, touch wood all seems okay so far. My wee is still very red on day 2. Thanks for the tip with poundland. Ihave been told not to blowdry my hair as it dries the scalp out and to try and cut down washing of hair which I normally do every other day.I had it cut short and spiket prior to the chemo beginning.I am using the cold cap and although it prolongs the session by two hours, I dont want to go down the wig route, as most of my treatment will be during our hottest months and I imagine wigs can get hot and itchy,so didnt want to spend th emoney if I didnt end up using them. So I have opted to buy a selection of bandanas and scarves at the mo.

Lets hope we feel like this throughout.My next session is may 20th, fingers crossed all goes well for you xx Ruth xx

ladycroft
Member

Re: Starting chemo May 2014

BTW I found the Simple shampoo,conditioner,handwash and roll on deodaront in Poundland on Sunday so stocked up ,how much ? £1! boots were charging £2.89 for the conditioner. I know its quite hard to get hold of as Tesco and Coop don't do it. Really good for other bits too .
ladycroft
Member

Re: Starting chemo May 2014

Hi Ruth ,well apart from going to the lo a couple of times in the night ,I slept pretty well. I hadmy meds this morning and then a shower. The clingfilm is a bit of a faff ,but managed it after 2nd attempt. I secured the edges with bands I cut off a rubber glove . Will have to investigate a better method as when the weather is kot I have at least 2 showers a day. Still no sickness and minor headache,don 't know how long this will last but let's hope it does . xJan
barbersdrove
Member

Re: Starting chemo May 2014

So sorry Sheryl to hear that you are not only in the hosp but also have found the Drs less than the comforting, informative people we want them to be.  I hate it when they try to hide the bad news as you somehow know they are just not telling you everything.  Knowledge is power and I fgeel much more empowered when I know the fullest picture possible.  So helpful too to hear peoples experience of the first treatment so thanks for those descriptions.  I was taken to see the set up yesterday and it all looked very relaxed.  I was sur[prised though as I expected to see lots of bald heads but saw only one so I'm assuming those I saw were near the beginning of treatment too.  Hair app tomorrow and they have advised me to have it cut as short as possible to help wth the wig fitting session i am going to.  I went shopping afterwards to purchase lots of the stuff on the 'things to help you get through it' list, bonjela, childs toothbrush etc etc. 

climbingrose
Member

Re: Starting chemo May 2014

Hi all,

 

I thought I'd join this thread as I have my first FEC chemotherapy session tomorrow. I had a port line fitted today and am finding it quite uncomfortable at the moment. I thought it was going to be done under general but it wasn't and I could hear them all talking about what they were doing whilst I had a cover over my head. Not pleasant, but I'm glad that bit is over with. Managed to get to sleep around 9pm and am now wide awake at 1am and can't stop worrying about tomorrow. I decided not to go for the cold cap which should cut down the session time but there are widely differing views on how long it will actually take. What has anyone else found with the FEC sessions (if they have already had any)? Not sure whether I'll try to get back to sleep or play Candy Crush all night!

gmc
Member

Re: Starting chemo May 2014

Hi Ruth and Ladycroft- well done on your first session. Seems you both coped really well which is so encouraging. I've been out to dinner tonight with both my daughters to have a lovely meal and quite a few glasses of wine - you did say to drink gallons -  before my first session tomorrow afternoon! Dreading it but your posts are so encouraging.

 

Linda - Hope tomorrow goes as well as these things possibly can. There's no pain quite like it when you lose a parent and my heart goes out to you. All the best for Thursday, too. I've just had my hair cut and friends tell me I should have done it earlier as it knocks years off me - Imagine how young I'll look when it all goes!!!

 

Jo - enjoy your break and re-charge your batteries. I'm still in the process of claiming my insurance money back from a weeks holiday in Tenerife that we'd booked for end of March. Roll on next year.

 

Sheryl - hope your stay is a short one and you feel a whole lot better soon.It does makes you feel happier when you have some confidence in your doctor.

 

Barbersdrove - You and your family sound like you have had a nightmare journey. Hope you enjoy a lovely weekend away and back to enjoy a hair appointment. I did look sadly at all the hair on the floor following my haircut but then I thought better the mess on their floor than mine!

 

Hi Rosie - wish I was further down the line like you. Had a lovely hol in Cyprus a couple of years ago. Good luck with the rest of your treatment.

 

Off to bed now Ladies although feel a bit too wound up to sleep.

Take care, Gill X

 

 

ladycroft
Member

Re: Starting chemo May 2014

Sorry to hear that Sheryl, hope they sort it for you asap.

Linda ,hope you get through ok tomorrow , Can only imagine how hard it must be x

Jo enjoy your break you will feel the benefit ,i had a week in France and had a great time , it really set me up for the long haul.

Ruth, lets hope we feel ok tomorrow ,talk soon ,

Goodnight ladies  sweet deams x

wax2014
Member

Re: Starting chemo May 2014

Hi ladies your posts are making me fell calmer about 1st one on thursday, just tomorrow to get through, tears have started already, but I know we will give dad the send off he deserves..trying to keep it together..xx Linda xx
Gadgetgirl
Member

Re: Starting chemo May 2014

Hi ladies, good to hear reassuring reports from our first candidates/victims/guinea pigs/heroes!
Sheryl, so sorry you're in hospital, here's hoping they can sort things out properly for you so you can move forward and get better. I'm going away for a couple of days with my OH to a nice boutique spa hotel for a little break between surgery (6weeks ago) and chemo next week, coming back on Friday to a physio appointment. Deep joy. All the best Jo x
fowey
Member

Re: Starting chemo May 2014

Hi Ladycroft,

 

 

Good to hear your first chemo went okay. Like you, following my first one today, I have managed to eat dinner and religiously taking all my anti nausea meds. The red wee thing is weird but I was warned 🙂

I was in hospital for 4 hours all told. The cold cap was doable after the first 10 minutes. I was so scatty, as I remembered my conditioner, but not a hairbrush or a cardy and found myself getting chilly a couple of hours into the cold cap.

The nurses were lovely patiently answering my endless questions, plying me with water/coffee/tea and in a very calm environment. My portacath area was still sore, but they were so gentle, even telling me to punch them if I wanted too ! or cry 🙂

I was surprised how quickly time passed by.One down, next one due 20th May, it will be a relief not to have to go to a hospital for 3 weeks now fingers crossed.Good Luck with yours, it will be useful to share tips xx Ruth xx

Sodastream
Member

Re: Starting chemo May 2014

Ladycroft that's very reassuring. It must feel strange feeling ok at the moment as I'd built it up in my head that you'd feel awful straight away. Keep the posts coming over the next few days so we know what to expect.
I'm up in hospital again today because breast inflammation has flared up again. For the first time since this process it seems like I've seen a doctor that actually knows what he's talking about. They're going to admit me on IV antibiotics again to see if it makes a difference and if not he says it might be inflammatory BC but at least he's being honest and not trying to fob it off as cellulitis.
ladycroft
Member

Re: Starting chemo May 2014

Well first one done and dusted, Only 90 mins later than they said,but for my hospital it's a result! 

The cold cap was very cold but not too bad for the first couple of hours ,then it seemed to get heavier and I got a slight headache. I did drink gallons of water the day before and on the morning too,so went to the loo 4 times whist there. The last time was about an hour after the last treatment and I was surprised how quickly the red chemo drug went through me(good job they tell you !) I wasn't cold at all surprisingly and sat in a vest top with just a towel over my shoulders. I was at the hospital for 5 hours all told and have been home for about an hour now. Feel ok so far.hope it lasts.

rosie14
Member

Re: Starting chemo May 2014

Hi Sodastream cold cap not available in Cyprus. I am having TAC but have got to have Herceptin added on 4th round as I am HER 2 pos. Yes it is reassuring to know that it is reducing the evil cells! x
barbersdrove
Member

Re: Starting chemo May 2014

I have my first chemo on May 8. Having 4 cycles of T&C. I had a lumpectomy and sentinel node biopsy on valentines day then had to return for a full mx 5 weeks later. I have found this forum so helpful and am pleased to have found this thread. The info given is really useful and I too appreciate the description of the first treatment. I go for the New Patient talk tomorrow morning. This is my third round with cancer having had bowel then cervical previously. That was in the 1980s when they didn't have chemo. You had the surgery and either survived or didn't. I was lucky each time. I am also the third of 4 sisters to gave BC. One had lumpectomy and radiotherapy and is fine unfortunately the other died of it. Anyway, I am now being referred for genetic counselling but having 3 daughters and 4 granddaughters it is worrying. As for the chemo, I gave done a lot of reading and am getting mentally prepared. I need to go shopping. I've booked a haircut next week and am taking a weekend away this coming weekend to see my younger sister. Looking forward to the talk tomorrow.

Sodastream
Member

Re: Starting chemo May 2014

I'm still learning how to navigate this forum, hence posted before I'd finished.
Good luck Linda, Ruth and Gill with the chemo. I can't imagine what you must be feeling and how you'll sleep tonight. I can only it must get easier very time as you'll know what to expect. I have everything crossed (with the size of my left boob might even be able to manage to cross that as well) that it all goes to plan and you have as few a symptoms as possible. Keep in touch and let s know how you get on.
Sheryl x
Sodastream
Member

Re: Starting chemo May 2014

Hi Rosie14. So glad to hear your chemo is working. I have been worried about doing chemo first as you just want the cancer out of your body however it must be reassuring to feel it reducing and knowing that the chemo is working. What chemo are you on and did you do the cold cap? Let us know how you get on.
gmc
Member

Re: Starting chemo May 2014

Hi Ruth and Ladies

 

Good luck for tomorrow Ruth - will be thinking of you.

I have been for a review today and the oncologist has given the go ahead to start my first dose of chemo on Wed. The infection is low grade so shouldn't be a problem. Although the side effects of the FEC T were explained to me today and seem pretty frightening I am glad not to delay any more and get rid of those b****** rogue cancer cells at loose in my body!

I did my bra shopping on line as haven't felt like undressing in public  - not a pretty sight, especially now with the Hickman line. Still quite sore following the insertion but had bloods and tube flushed today and didn't feel a thing.

One of my granddaughters has been told now that Granny may have to wear a wig soon. This afternoon she asked me if I would be able to do any magic tricks with it ! The mind boggles but I may work on that!

 

Take care everyone and good luck to us all,

Gill X

 

 

ladycroft
Member

Re: Starting chemo May 2014

I had my second op on the 26th Feb and stopped wearing a bra about a month ago at night. I get odd twinges in the breast and a prickly feeling in my arm sometimes  where the nodes were removed but otherwise ok . Will see how I get on tonight with the picc line and sleep. That's if I manage to get any. Will be thinking of you whilst 'Chilling' tomorrow. x

fowey
Member

Re: Starting chemo May 2014

Hi gmc and ladies,

 

You are all really good going bra shopping ! I have stayed with my existing bras and my hubs has had to do them up for me as both sides are sore...left post op and right dur to portacath being fitted last Friday.

The last thing on my mind has been hitting the shops for a bra fitting, so hats off to you girls !

Although it is suggested that we wear a bra at night, I have been the opposite and cant wait to get the damn thing off 🙂

I am giving the cold cap a whirl when I have my first treatment tomorrow.Onwards and upwards 🙂 xx Ruth xx

fowey
Member

Re: Starting chemo May 2014

Hi Ladycroft,

 

Glad to hear picc line fitting went well, I am still sore from my portacath fitting last Friday. I am having my first chemo tomorrow and also trying the cold cap too ! I am told the whole thing will take 4 hours ?

We will have to compare notes good luck xx Ruth xx

wax2014
Member

Re: Starting chemo May 2014

Jan,

 

I am glad that it wasn't as bad as you feared, good luck for tomorrow. I am at the hospital for pre 'start ' meeting at 3.00 today ready for 1st one on Thursday, so it's nice to know should I require a PICC that it again is doable.  Please let us know how you get on tomorrow ; when you are up to it.

I had my hair cut short in readiness as I had long hair past my shoulders and can gladly say I do like my new look, no matter how long I'll have it for !!! I had some nice comments at work as well which cheered me up a bit ..

 

Linda xx 

ladycroft
Member

Re: Starting chemo May 2014

Hi Ladies ,well I had my Picc line fitted a few hours ago and I'm relieved to say it wasn't half as bad as I thought, just one small tube protruding ,and i thought there would be 3! Tomorrow I have my first chemo and am trying the Paxman cold cap. Best wishes to you all and I'll see you here when I 've had it x Jan

rosie14
Member

Re: Starting chemo May 2014

Hi Sodastream I have popped on from April 14 starters. Your post interests me as I am having chemo before surgery too and most people have surgery followed by chemo. I have grade 3 invasive cancer and like you my breast ballooned out and felt like it was going to burst. It was so swollen that it was much higher and firmer than the left and I could have been a candidate for Embarrassing Bodies! My tumour was
6cm. I have now had 3 chemo sessions and the swelling has subsided and I the breast is feels and looks more like normal. Certainly I am not getting the feeling of bursting out of my bra. I noticed a difference after the first session. I hope this puts your mind at rest a little. On the hair front mine started coming out rapidly after 2nd chemo session and now it is very thin with bald patches. I got mine cut short before starting chemo. I am now using head scarves, I do have a hair piece from Heather's Hair a website for cancer patients, and a wig on standby!
Good luck.
gmc
Member

Re: Starting chemo May 2014

Hi Sheryl

 

Like you my breast cancer is grade 3 and over 4cm. Had op first to remove it but margins not clear so will have another op after chemo. The consultant is talking about a reduction at the same time on the other bood so that I will have a matching pair !

I too had probs with bra sizes. As my lump is at the bottom of my breast  where it meets my  ribcage I found all my old ones far too tight and put too much pressure on the wound. I bought a couple of larger than my normal bras which and they also do up at the front. They have been a godsend .

Good luck with the hair decisions. I'm not going to go with the cold cap but only because I'm a real "wuss" and want the treatment over asap ! I may regret that when it all comes out! That of course is if I get the go ahead as still slight infection in breast.

 

Good wishes, Gill

alabamasam
Member

Re: Starting chemo May 2014

Hi Sheryl, just dropping inform the November group, sorry to hear about your diagnosis xxx just advice on cold cap, I've finished chemo about 6 weeks ago now, I used cold cap throughout & kept my hair. I lost loads but its amazing how much you have & I can tell but no one else really can 😊 I have a wig but have not used it. Some of the girls in my group have dyed their hair already just 6 weeks clear of chemo using naturetint hair dyes. You can get them in holland & Barrett & you can also use wash in & out mousses as a temp fix. Ill doing mine next week.
Good luck with your treatment xxxx
Sam
Sodastream
Member

Re: Starting chemo May 2014

Hi
I'm 43 and was diagnosed last week with grade 3 breast cancer. They still need to do more tests to determine type but I have been told that they will start chemo within 2 weeks and I'm due to meet with the oncologist and surgeon on Wednesday. My lump was measured last week at over 4cm and I'm sure it's even bigger as today I had to go out and buy new bras as my old ones were uncomfortable (I've gone from a 34dd to 34G). They want to do chemo first to shrink cancer so in a way I actually can't wait to get started as my breast is so heavy and painful at times. I'm trying to prepare myself and this forum has been a good source of knowledge. Still not sure whether to have cold cap but my sisters friend used it and kept all her hair. Problem I have is my hair is naturally dark and I hate to think how much grey is in there but I have blonde highlights. I suddenly had a thought that if I don't lose my hair then I'll end up looking like a skunk as you can't use hair dye for I think 6 months after chemo. So I need to arrange to have my hair dyed back to my natural colour and was thinking of having it cut shorter just in case. I will also go and chose a wig as a back up.
I really hope that all f your first chemo's are as symptomless as possible and I look forward to hearing how you get on. Any advice and tips will be greatly appreciated. Sheryl
wax2014
Member

Re: Starting chemo May 2014

Hi poemsgalore, I have come a cross many of you posts since joining this forum with loads of positive info and tips so thanks for joining us..I'm getting gittery..maybe silly but I've managed to work myself into a state..I've got to have a CT tomorrow..on the same scanner my dad was on less than four weeks ago..think I may loose the plot...getting a bit too much x
poemsgalore
Member

Re: Starting chemo May 2014

Hello all you May chemo starters. Just popping in from the February Valentines 2013 group. We have all finished our active treatment now, and moved on to other things. But we still have anxieties of recurrence, and problems with the after effects of chemo and side effects of hormone tablets. But on the whole, coping better than we imagined. 

 

Wishing you all very good luck for your treatment. This group will be a Godsend for you all as the support and help you will give each other will carry you through.

 

Best Wishes

 

poemsgalore xx

gmc
Member

Re: Starting chemo May 2014

Thanks, Linda - Being very lazy today ! Going to have a look at those web sites you mentioned now,
Good luck with your scan, Gill X
wax2014
Member

Re: Starting chemo May 2014

Gill,

 

Doh, Sorry it was a bit of a silly question I should have realised, really sorry you're having to go through this all again. I've got to get used to remembering to be careful after lymph node surgery because of the risk of lymphodema, not using that arm for blood tests etc. Hope you are having a relaxing day today after yesterday.

 

I am up early tomorrow for my CT Scan 8.00am ! Hair cut in the afternoon, I have ordered some bandana's from anna-bandana and a fringe from Heathers Hair so I can have a practice ..

 

Have a good weekend all... Linda xxx

gmc
Member

Re: Starting chemo May 2014

Hi Ladies

 

Had the line put in today and glad that's over with.

 

Wax - in answer to your question I was told the line in the chest was necessary as I have had all the lymph nodes removed from under both my arms so they are unable to insert needles into my arms due to the risk of lymphodema. Feeling a little fragile now but hopefully it will make the blood tests and chemo a little easier to administer.

 

Jo- Thanks for your good wishes. I too have been to a wig fitting but luckily it was a quite pleasant experience .It didn't start too well as the lady took one look at my hair which is  thick, curly,  and very wayward  and said "I don't think we have a match for that"  ! It was a shop in Sandhurst and all very private and caring. I was expecting to be quite upset by it all but in the end my daughter and I had quite a giggle, tried on lots of different styles and colours and ended up with a short style quite different to my own. I fancied a change! I wasn't aware of any subsidy towards it except the VAT was taken off. So glad that you have a supportive family - it makes such a difference doesn't it?

 

Gilly - Thanks for the good luck message. I'm probably not handling this 2nd diagnosis as well as the first time around. I'm sure I'm far more emotional and cry at the drop of a hat. Chemo was my greatest fear before but luckily didn't need it then - but now I do and it's giving me plenty of sleepless nights worrying about it!

 

Off to bed now as has been a long day at the hospital.

Best wishes to all, Gill X

Gadgetgirl
Member

Re: Starting chemo May 2014

Hi all,
Went for wig fitting this afternoon, took 16 yr old daughter and another friend. Not the nicest experience, off hand woman, no privacy for trying on, great support from friend and daughter though :-). Tried on a few wigs to find right colour and style very similar to how I usually look. Because I have a small head they didn't have the right colour in my size so will order it in so I won't know for sure that it is what I want until I've actually tried the real thing on. I'm in Wales, NHS pays £90 towards 1 wig. Just need to give them my hospital number then they check with chemo unit. I will be adding £20 to get the one I want. I also tried on a few other different ones to see if I want a 'fun' wig too, but had run out of emotional energy to think about after deciding on the 'normal' wig. I think not having husband along was a good thing, female company much better. Makes the whole thing seem a step closer and more real though.
Wax, so sorry about your dad, been catching up with other threads. My dad died in January but had been failing for a long time before. Now my stepmum has been told she has pancreatic cancer, inoperable. She had been looking forward to doing some if the stuff she hasn't been able to for the last few years while looking after him.
My lovely family (I have 1 sister, 3 kids, millions of in-laws) has been great, we have the shadow of my mum's death from breast cancer 26 years ago hanging over us so at least it's not being trivialised; my chances of cure are good but we all have had that frame shift that changes perspective and resets priorities.
Gill, hope it was ok today and you're still good to go next week.
Onward and upward!
Jo xx
alabamasam
Member

Re: Starting chemo May 2014

Hi Ladies
I was dx last August & have now finished my chemo & am on day 3 of my radiotherapy. I had a lumpectomy in September last year & then had to have a full node clearance in October. I had 3 FEC & 3 Tax. After an hour of my first chemo my veins shut down so the following week I had a Hickman line fitted. I don't think you would have a Hickman or pic line fitted unless you have veins that go shy when a nurse appears !!! Anyway although a little awkward at first the line is great, makes treatments much easier, no more needles !! After that treatments were easy 😊 I did use the cold cap, I had the Paxman machine & I've not needed to wear a wig at all. I did have my hair cut short & although it seemed I was losing a lot it is amazing how much hair you have. Cold cap on treatment 3 wasn't quite tight enough so I lost some hair on the top of my head but not enough for anyone to really notice. I only washed my hair once a week, dry it with a cool dryer, wash it using cool water & simple shampoo & conditioner. Cap goes on just half an hour before treatment, it gets to minus 5 but I didn't struggle with it. If you take a couple of paracetamol before & have a hot drink that helps but after ten mins you are used to it. Treatment takes about 45 mins and then with the FEC you have to have cap on for 2 more hours & on the tax it is on for just 45 mins after. If your hospital has a Paxman machine then I can only recommend it as it has worked for me & several other ladies Ive met through the forum.
I started a Facebook group which is private. We are called the November Newbies & we all met on this forum. It just allows us to maybe talk more freely, post pics of ourselves, bald heads, various side effects etc. it's a private group so only we can see it so you can post anything you like. It may be good for you ladies starting in may to do this as it has really helped us all & we have also now booked ourselves a weekend away in November to all meet up.
If any of you have any questions please just ask, i know it doesn't feel like it now but you will all get through this, it's not easy but I'm through it and the radiotherapy is going ok too
Hugs to you all
Sam xxxxxx 💕
Butterfly318
Member

Re: Starting chemo May 2014

Evening Gill

 

Really sorry that you find yourself back on this journey.  i am impressed that you have done it once and you sound like you are taking all this in your stride,  i'm sure the reality is different and i'll be keeping up with how you go, wishing you lots of luck.                       Take Care   Gilly x

 

Wax.  will be thinking of you next week, Sadly it sounds like there are some dynamics with your Sister.  You've got other stuff going on so hopefully you will be able to rise above it.  It is difficult to plan what you need for the Chemo.  The hospital will give you all the medication and advice, mouth wash etc.... but i did buy a digital thermometer and was reassured by being able to monitor my temperature. I did keep a diary and a pattern developed after each Chemo, changing slightly from FEC to Taxotere.  I did follow all the advice to prevent infection, no swimming, vigilant around hygiene, own towels, no pate, warm milk, soft cheese (similar to when pregnant).  Use hand Gel and i did clean my teeth with flouride gel.  I had my Chemo before surgery so worked throughout and we have a wheelchair access toilet (hidden round a corner downstairs) so i used that and kept all my own crockery / cutlery / towels etc.  It did feel a bit over the top but in six months i had 2 visits to A & E when temperature wouldn't come down but didn't have an infection on either occasion.  Take Care for now.  Gilly x         

wax2014
Member

Re: Starting chemo May 2014

Hi ladies, looks like we are creating a good thread with lots of positive advice..it'll be good to find out how we all get on with the first round!!
Gmc..good luck with the line tomorrow. Can j ask if you were given the decision to go with the line rather than just starting with a canular?I have read that you can get some nasty long term damage/side effects from the canular a bit scary??
Donna..thankyou for letting us know what to expect at the first one...your post has actually calmed me down a bit!!
Gadget girl..good luck with the cold cap you have a good reason to give it a go..really hope it works..just concentrate on the wedding ,should help having something to focus on. I was worried about losing my hair before dad died as I didn't want him to see me looking different..I have now decided that I am so drained with everything that I'll just let it take its course ..I am having my hair cut short in readiness on saturday..although my sister will think its because I want attention at the funeral on wednesday..as far as she is concerned having breast cancer is like having a cold and i've had my op now theres nothing wrong with me!! But thats another story !!
First one on thursday 1st so..here we go..I'll be back on soon to see how every ones getting on..hugs and luck to you all...wax xx
gmc
Member

Re: Starting chemo May 2014

Hi Wax and other "May" ladies.

 

I am due to start my FEC-T chemo on 30th April but thought as it's the last day of the month I would like to join the May group to share our experiences. I am having a line put in my chest tomorrow - under local anaethetic so very worried about that! Thanks for all the interesting tips to prepare for the after effects of chemo and I , too, will get together a shopping list. It was touch and go as to whether I could start next week as I have a seroma which had to be drained several times and an infection so am still on anti-biotics. Got the go ahead today though as the consultant didn't want to put it off any longer.

 

I had breast cancer previously 11 years ago and had a lumpectomy, radiotherapy and tamoxifen for 5 years - but no Chemo ! This time it's in my other breast and a lot larger . I had a lumpectomy in March and all the lymph nodes removed but the results showed that the margins were not clear and 5 lymph nodes infected so I am to have the course of Chemo and then further surgery and radiotherapy. Sounds like a long journey!

 

How awful for you to have to cope with the death of your father too at this time. Sometime it takes your breath away what we all have to cope with - Good luck to you and everyone else,

 

Gill

 

 

story_so_far
Member

Re: Starting chemo May 2014

If I was you its better to find out if they issue a thermometer free of charge as I got one given to me on 1st chemo.

Gadgetgirl
Member

Re: Starting chemo May 2014

Yes get a digital thermometer, bring it with you if you go away overnight just in case, along with your chemo card/book.
Gadgetgirl
Member

Re: Starting chemo May 2014

Hi Wax,

there's a long thread on the general chemo board with lots of hints and tips. All looks a bit daunting to me!

I have had my pre-chemo meeting, started off tricky as I had to negotiate a change of start date to fit around my son's wedding in the summer.

I looked at all the stuff about cold cap on the fora here and had pretty much decided not to bother. At the chemo unit they said people prone to migraines or headaches usually find it the worst, I'm not, so am now thinking I'll give it a try on the basis of nothing to lose - if it doesn't work or I can't tolerate it I'll lose my hair, as I will if I don't start it. I wouldn't bother at all if it wasn't for this wedding, I just want to look like me in the photos which will be a record forever. I was also given a list of local places that do wigs, haven't been to see any yet but am planning to get it sorted out before I have the first chemo. I had mx and ANC and LD recon just over a month ago, my hair is usually short and now needs cutting. So my plan is to get my hair cut to my normal style so the wig people know how I want it to look; get a wig as much like my usual style as possible - I will also ask my hairdresser if she cuts wigs as she is great at getting my hair how I want it; then try the cold cap; and hope it works for me! As a commited pessimist I will probably also get a soft cap to wear in bed for when I do start to lose my hair, and a couple of scarves to get me started.

Regarding other stuff, I'm planning on stocking up on fizzy ginger ale, as both ginger and fizzy water have been recommended by quite a few people. Also cartons of pineapple juice, pots of ready made jelly, mints eg tictacs or polos, lots of tissues, fybogel and gaviscon. It's really difficult not knowing how it'll be, not wanting to need stuff that I don't have but also not wanting to get loads of stuff I never use, so the above is the list I've boiled it down to initially. 

I've read that sucking ice lollies during treatment reduces the mouth ulceration - same principle as the cold cap - so am planning to bring a bunch of ice pops along to suck during the chemo. I've also heard of ice mittens/slippers to do the same for nails and will look into them some more too. I know it seems trivial but I think losing my nails would be the last straw on top of everything else! And would like to be able to wear nice shoes at the wedding.

All the best Jo xx

 

 

Donnaandfamily
Member

Re: Starting chemo May 2014

Hi Wax

regarding the actual procedure on the day........ I arrived at 9am....had  my observations taken.... was made comfy.....shown around the unit so know where everything was.

A cannula was put into my hand ( keep you hand warm all morning it helps the veins to stand out)

Once the cannula was in I was given tablets with antisickness and steroids. I was given Emend anti sickness which is given one hour prior to the chemo being commenced.

I had a heated blankiet over my arm because the chemo can feel cold as it goes into the veins

One hour later the chem was commenced....some via infusion via a  pump and some inserted into the cannula directly with saline infusion .......

ALL WAS  PAINLESS.......... one of the chemo meds made my eyes feel heavy like sleepy.....common apparently ..... but passed ....

Cannula removed....

Mediations given to take home .

I left the unit at 11.30am....then went shopping with hubbie. I have to say about 4 hours later I suddenly felt tired....like someone pulled the plug out of me lol

If you have the cold cap it usually adds 1-2 hours to the time you are there

The session was calm and nothing to fear

I hope this helps to prepare for the day and take away your fears x

Drink as much as possible the day prior and the day of chemo......

Good luck ....... xx Donna

 

wax2014
Member

Re: Starting chemo May 2014

Wow..thats a pretty extensive list..i'll make sure I try and pick out the essentials and go shopping at the weekend..thanks very much for the info. Gagetgirl have you had your pre start meeting yet and did you get wig advice and or cold cap advice then? Best wishes Wax xx
Donnaandfamily
Member

Re: Starting chemo May 2014

Hi Wax

Im sorry to hear about your dad x I cannot imagine how you are feeling

 

I can advice on items I purchased....

- child soft toothbrush - x 6 - one new one for each course - I clean my teeth as much as possible - your mouth may go dry....so invest in sugar free gum...dentist adviced me to keep mouth moist to avoid bacteria  which result in infections and cavities

- alcohol hand gel....as you enter my house and in the bathroom

- my own crockery, cutlery, mugs and chopping boards - to avoid cross contamination

- mouth wash - I had corsodyl...but GP can prescribe fluroide & mouth wash

-  lip balm

- digital thermometer

- suitcase - all packed incase have to go into hospital

- bath - oilatum

- body cream - I use my daughters - oilatum junior cream

- tic tacs to keep mouth tasting nice

- baby shampoo

- factor 50 sun cream

- apro milk .....because want to avoid dairy - (oestrogen)

I also saw tihis =

The post is by Jo, one of the BCC nurses. This is the list in full, but others have added more tips within the thread.
 
For the Gums:
- Bonjela
- Cordsyl daily for x 3 and Cordsyl normal for 1 (dentist recommended)
- ultra soft bristle brush/baby toothpaste
- aloe vera based toothpaste, Beverley Hills gum strengthening toothpaste.
For the mouth:
- Gelclair, salt water wash, Oraldene, tonic water, Difflam mouthwash
- aloe dent lip balm with lysine (good for coldsores also)
Bad taste: - pineapple (fresh/chunks/drinks/lollies) - haribo (not 
tangtastic) - celery, mints, fresh fruit, pear drops, cola cubes, 
sherbert lemons.
Water tasting odd: - flavoured/sparkling water, lemon squash
Nausea:
- Ginger (beer, biscuits, sweets, fresh)
- smaller, regular meals
- V8 vegetable juice
- Manuka honey with hot water and peppermint oil
- Slippery elm powder mixed into natural yoghurt
- Banana for early morning with the anti-sickness tablet
- Flavoured/green tea if can’t face milk or dairy products in tea.
- Lite bites suggestions – cream cheese and bread sticks
- Nothing spicey
- Flat lemonade
- Plain biscuits
- Banana/peanut butter sandwiches
- Travel bands/anti sickness bands (Poundland cheaper than Boots).
General Wellbeing/During Chemo:
- Carry your card and thermometer with you all the time and keep bag packed
- Chemo Caddy – see below
- Pin up emergency numbers where everyone can see them – who to contact and when
- Check with your consultant who to phone at eves and weekends
- Store emergency numbers in your phone
- Digital thermometer if not given one by hospital (Poundland cheaper than Boots)
– take temperature under armpit as more accurate
- Lifemel honey to boost white blood cells
- Drink LOTS of fluid before and after chemo - Lucozade for energy - Light meal before chemo
- If having CMF and nose issues when Chemo being administered then sweets or lolly (mini callipo) to suck during (small cool bag also recommended to keep lollies frozen)
- Bath pillow (helps prevent cold bald head on cold bath)
- Don’t take 2nd steroid dose after 2pm (awake/energised at wrong times)
- Eat fruit when you need to eat whilst/before taking tablets
- Avoid alcohol for 2/3 days after chemo
- Keep out of direct sunlight
- Pregnancy type diet to avoid risk of infection – ie no un-pasturised dairy products, wash veggies, meat properly cooked
- Accept help wherever offered!
- Prepare/buy nice food in advance for bad days
- Smash! When you can’t eat but must and mouth is sore! (Needs ketchup though)
Sleep when you can - Fresh air - Exercise - Laughter - Ask for help if really sick! Docs etc for additional drugs! - Steripen to sterilise water of 
nasties (works through UV and no nasty chemicals and easy to use but 
£90)
- Runny nose through loss of nose hair – tissues!
- V-pillow
- Check and see if GP can refer you to local leisure centre for cheaper use of fitness suite and swimming pool.
- Constipation - breakfast of high fibre cereal/fruit smoothie/prune juice - “Go Cake” – see below for recipe.
Sore Eyes
- Boots hayfever relief drops
- Cooling/chill eye mask
Headaches - gel pads (stick on kind used for infants/migraine)
Dry skin/rashes/spots from Taxol - gentle moisturiser for hands and feet - 
drink lots of juice and water but leave spots on face alone as skin 
sensitive.
Hairloss/head coverings
- buffs from buffwear
- baseball cap
- headcovers website
– sleep caps, scarves, bangs, eyebrows, eyelashes, wigs etc
- don’t wash it too often, use baby shampoo
- Browzings by Benefit – good eyebrow make up - Boots
CHEMO BAG AND CHEMO CADDY
Chemo bag
(A bum bag has been suggested as keeps both hands free and no restrictions on your shoulders and particularly snugpak response pack (online) as 
“tested in war, never beaten” and big enough to take a tool kit/chemo 
caddy or chemo bag).
Keep a bag packed in case of 
emergency hospital visit and to take on chemo days. Pyjamas, warm socks, clean knickers, wash bag with spare toothpaste and brush, face wipes, 
mirror, tissues, bag of pineapple pieces, anti bacterial hand gel, book.
Chemo Caddy
A basket with a handle (previously from delivery of pot plants) with 
everything needed in it so that you can have it by the bed upstairs or 
carry it down to crash in front of TV.
- Edibles – ginger bics, minty chewing gum, root ginger to nibble.
- Treats – nice hand cream, chocolate, octopus shaped back massager, nail cream, buffer.
- Essentials – tissues, glasses, lipsalve, bottle of water, straw (in 
case can’t lift head from pillow), little bell (to summon family to 
fetch/make tea)
“GO CAKE"
4oz All Bran, 
5oz sugar, 10oz mixed dried fruit (basically whatever is in the cupboard – use a nice mixture) – apricots, sultanas, cranberries etc, lots of 
chopped prunes for extra “GO”. ½ pint of milk 4 oz self raising flour. 
Put All Bran, sugar and fruit into a bowl, mix, add milk 
and allow to stand for at least half an hour (while you recover from the physical effort so far). Sieve in the flour, mix well and pour into 
well greased 2lb loaf tin. Bake in moderate oven (180 degree c) for 
about an hour, until a knife comes out dry. Cover with foil after 30 
mins if its browning too much. Turn out of tin and cool. Serve in thin 
slices with butter as thick as you like it!

After chemo = Try to avoid large groups of people (including business meetings), hotels, airplanes, and other crowded places. Be extra careful about washing your hands and watching for any signs of infection or fever.

Hope this helps x

Good luck for the 1st xx Doona

 

 

wax2014
Member

Re: Starting chemo May 2014

Hi,

 

I am also starting Chemo, Fec-T , on 1st May and have my meeting on Monday to discuss how it all works. Can anyone tell me what to expect, I am going alone and don't want any nasty suprises. I feel totally unprepared as I lost my dad last week and all the arrangements etcs have taken over with his funeral being on the day before I start chemo. I have arranged to have my hair cut on Saturday but cannot decide whether to try the cold cap or not. I have read many treads saying it adds on a long time to the session with varying results, therefore I will also be on line purchasing head scarves etc in readiness.

Could anyone tell me if I should invest in a digital thermometer and give me a basic list of what to buy in readiness, I am currently working and feel that I am running out of time to get things in place as I still have a lot of sorting to do for the funeral.

 

Thanks Wax   xxx

 

busyanne
Member

Re: Starting chemo May 2014

Hi Gadgetgirl, You an get really good wigs.  The one I had was brilliant in fact itwas better than my own hair.  Some women like scarves but I could never get them to sit right. Make sure you order before you start your chemo or soon after.  You will probably need it before the second infusion.  Anyway good luck you have a tough year ahead but you will get through it.   

Gadgetgirl
Member

Starting chemo May 2014

Hi all, I'm due to have first of 6 TAC on 6 May, have been looking at the other chemo threads to find out as much as I can. Planning to at least try the cold cap, but will sort out a wig as well as generally tend to pessimism.