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October 2018 Chemo starters

Member

Re: October 2018 Chemo starters

That’s good news about partners being able to have the flu jab I wasn’t aware of that Smiley Happy
Has anyone had a port fitted instead of of picc line? I had my pre-assessment yesterday and they were pushing for this instead of a picc line but I’m not going to lie it freaked me out a bit!!
Also I’ve been in complete denial about losing my hair! I’m trying the cold cap but I’m not sure how I’ll find it. Those that have wigs and scarves where did you start? I’m going to try some wig shops next week if I’m up to it but wanted to order some scarves or headwear soon really.
Member

Re: October 2018 Chemo starters

Blooming autocorrect, that should be BCN not CNN.
Member

Re: October 2018 Chemo starters

Thanks WhyteFawn. I asked the CNN but she didn't sound confident so I'll speak to the chemo helpline number and see what they day. Interesting thought about getting my husband to have it though, with the pressures of work he's currently experiencing and my stress on top, he's more liable to catch anything that's going round work and it knocks him for 6.
💜 Fiona xx
Member

Re: October 2018 Chemo starters

Hi ladies.
How are you all?
Fiona check with your oncologist. I was told not to get the flu jab if too close to starting chemo. Though remember your partner's can have it. If they tell their gp that they are living with someone going through chemo and therefore at risk they should get it for free. My husband did last year. You'll just have to put up with them moaning about how much their arm hurts for a few days after 🤣
WhyteFawn x
Member

Re: October 2018 Chemo starters

I was told not to get a flu jab during chemotherapy -- okay before or after. But as @ktk says, check with your BCN or chemo helpline to see if the time between flu jab and start of chemo is long enough.

ktk
Member

Re: October 2018 Chemo starters

They do advise you have a flu jab. Just check the dates. I think your timescale is ok but your BCN or chemo helpline will give you a definitive answer. Probably best to get it done now if you can. Kx
Member

Re: October 2018 Chemo starters

Morning Ladies

 

A quick question - my GP's surgery is offering a flu jab drop in clinic this Saturday - should I take this offer up?  My chemo doesn't start until 26th October.  It's not something I'd ever thought of before but the surgery have included me in their round robin announcement!

 

Any advice will be gladly received.

 

Fiona xx

Shi Community Champion
Community Champion

Re: October 2018 Chemo starters

Fi 😘😘pair of Oct 17 gold hot pants coming your way, Hoike em up, clip onto that bunting chord and keep hold of each other on this journey, you are all amazing and 💪💪💪and beautiful. We are all here 👭👭👭 and will help all we can. Remember on chemo to keep yourself safe and phone that rapid response number as many times as you want, your units want to keep you safe too. Look out for pee burning but no temp, that’ll be a uti and will need hospital visit. Painting nails with black polish has saved a lot of nails as has rubbing vitamin e oil into the base of the nail, get baby bum wipes they will sooth botties and also anosol cream, sudacream and laxatives for when fec bungs you up. Ice lollies to suck while they inject the red on on fec will preserve mouth. Get to dentists before you start too, they will fit you in when you tell them you are starting chemo, oral hygiene is essential. If you do end up with thrush mouth get fluconzole don’t let them fob you off with drops. Also go in with a list of meds you want each cycle after the first one. I. E. Fluconzole, difflam mouth wash to ensure you are armed and ready ❤️❤️A lot of us kept diary in a graph chart for each cycle I.e. week1, week2, week3 each cycle and found it helped as we could refer back. Right then 💃🏻💃🏻💃🏻🕺🕺🕺💃🏻💃🏻💃🏻Tune on the chemo jukebox symphony by Zara Larson keep 💪💪💪💪keep 😁😁😁😁and when the 🤪🤪🤪🤪🤪Chemo gets you all 🤪🤪🤪🤪🤪be 🤪🤪🤪🤪🤪together 💕💕💕💕✨✨✨✨Shi xx
Member

Re: October 2018 Chemo starters

Thanks K, yes that does help and is definitely worth thinking about. I'll speak to the oncologist on 25th 😉

 

💜 Fiona xx

ktk
Member

Re: October 2018 Chemo starters

Fiona, the Picc line is a thin line that goes in from your upper inner arm to your vena cava, so the drugs then go into a major blood vessel. At the arm end it is held very securely in place with a clip stuck to your skin. It has a waterproof cover which is changed weekly when the line is flushed. You do not feel it and wouldn’t know it was there. You can cover it with a pretty cover, but in the winter your sleeve will cover it anyway. To keep it dry in the shower they give you a Limbo, but some people just use cling film. Hope that helps. Kxx
Member

Re: October 2018 Chemo starters

Reddi, I just decided that I need to accept and deal with the situation, and to try and make it more "fun", so Humphrey it became. It's going to be tough, I know that, and I've had plenty of tears and so has my husband.  But I can't change it, so I have to deal with it.  And the best medicine is laughter, isn't it? (Well, I suppose chemo, surgery and rads might be the best medicine in this instance actually but it won't taste as good as laughter!)

 

I've just gone and started packing my emergency bag, and I don't start chemo for ages 😉 I want to be prepared though for any eventuality, so I've packed 3 pairs of knickers in there too! 😜

 

💜 Fiona xx

Member

Re: October 2018 Chemo starters

Hello ladies

Can I interest any of you in a game to help us combat chemo brain????? It's on this forum in the coffee lounge /chat and games section and is called word association again. It's a little bit of light relief!

I think this link might take you to it
https://forum.breastcancercare.org.uk/t5/Chat-and-games/WORD-ASSOCIATION-AGAIN/td-p/159964

Hope to see you over there: Let's get that gray matter pumping 😁🙌😵

Sue xx
Member

Re: October 2018 Chemo starters

@FiMillan Totally surreal!

 

And I like that you named your lump Humphrey. I should have named my "good" lump. (The good lump's the one that got me referred to the breast clinic; the stealthy stuff in the other breast -- which nobody can feel -- was only found out because of it.) Now I've got a challenge to come up with a name before it comes out in a couple months.

Member

Re: October 2018 Chemo starters

Thanks ktk, every bit of advice is welcome. 

 

Thats interesting about the Picc line, as the hospital really were pushing it.  I'll see how I get on with the first cycle though.  They've said I can change my mind at any time.  How do you keep it dry in the shower? Does it stick out much?  I'm sure there are so many questions I could ask but I just don't know what they are at this moment🤔

 

And I'll have a look at the Look Good Feel Better course too. Still waiting for the wig lady to call me back, guess I'll have to chase her up tomorrow. She only does 1 day a week at my hospital.

 

💜 Fiona xx

Member

Re: October 2018 Chemo starters

Reddi, please don't apologise for going on. Every bit of advice you all give helps us new members to this club.  In fact you made me laugh, and laughs are in short supply most of the time these days.  I haven't done the Why me?" question because it's not worth asking, there is no answer (unless when I'm tested to see if it's genetic) but it still all seems a bit surreal I think, as if it can't be happening to me.  However, it is so I'm just going to get on and fight it.

 

Joining this forum has helped me tremendously, you're all inspirational having gone through so much yourselves. You all give me hope.

 

Yep, I'll definitely check with the oncologist on 25th as to how many FECs and Ts I'll have.

 

Thanks for all the words of advice, need to go and make more lists now 😉 LOL!

 

💜 Fiona xx

Member

Re: October 2018 Chemo starters

Seconding what @ktk said about Look Good, Feel Better -- the workshops are terrific and you get an amazing bag of goodies if you are able to go in person. Also check out Ellie's Friends to sign up for lotteries for freebies. I won a free oncology massage -- nice to have a little treat along the way.

Member

Re: October 2018 Chemo starters

@Aneeebel Short DVD sounds more like what I'd expect!

 

@FiMillan June 2018 starter here. As far as I know, they never give T (docetaxel or paclitaxel) at the same time as FEC. Typically, you get FEC for a number of cycles, then switch to T; there are quite a few people on the June 2018 chemo starters thread who are getting 3 FEC + 3 T; I'm getting 3 FEC + 4 T (and with the T, I'm getting HER2-targeted drugs, because one of my tumors tested HER2+).

 

In your pre-chemo cycle meeting (the "assessment" meeting), do ask the oncologist to clarify your treatment regime. They'll definitely know what they're planning.

 

My chemo day unit gave me a treatment diary in which I log both side-effects and ancillary drugs: steroids, anti-nausea drugs, injections to provoke production of neutrophils (the bacteria-fighting white blood cells that tend to plummet during days 7-14).

 

The diary suggests looking out for: constipation, diarrhea, fatigue, sore hands and feet (more an issue with T), nausea, vomiting, pain, sore mouth, temperature, and skin rash. Severity of side effects also matters.

 

Keeping track is important because at subsequent pre-chemo meetings you'll want to summarize your side effects for the oncologists, so that they can use the information to help decide whether to maintain your dose or lower it.

 

I also keep a personal diary just for me with more info on fatigue, mood, and my "observations" -- my little twist on Bridget Jones. I started taking my temp morning and night just to have a sense for what's normal for me -- I tend to be 36.0-36.4C, rather than 37.0C -- in addition to any time I'm feeling poorly. I log how much water I'm drinking. I also keep track of how food is moving through my system. (Gah, euphemisms for this topic are tough.) That was particularly helpful when I got severe diarrhea, as knowing how often was the difference between staying at home and being asked to go to the A&E. 

 

I make notes of my mood in my personal journal because when you stop the steroids, it can hit you emotionally -- something I learned from reading posts by the June 2018 chemo starters who had begun treatment before me. Knowing that this might happen really, really helped me.

 

Some of the June women noticed a rhythm to when they got mouth sores, though I haven't had that side effect myself. (At the suggestion of my breast cancer nurse, I've been using a very soft toothbrush -- I boil it every week to sterilize it, but you can also buy fresh ones --  and swishing my mouth with water and brushing my teeth with children's Sensodyne toothpaste after every meal/snack; then either using Corsodyl or rinsing with bicarbonate of soda dissolved in warm water. It seems to have worked for me.) On FEC, hair seems to start to go around days 10-14 -- everybody seemed to have about this timing; in my experience, this shedding rhythm repeated each cycle, even though I had less hair with each round. (I ended up doing a DIY pixie cut and then letting it fall out rather than shaving.)

 

I'm on cycle 5 of my total 7 and I don't have a PICC line -- my veins have held up okay. However, I've got bilateral breast cancer, so they've taken lymph nodes from both sides, and I thus switch hands for each chemo cycle, which might be why I've not had a problem. They can always fit a PICC later, even quite late in chemotherapy. Drinking water the day before and day of chemo will also help make your veins nice and plump for the nurses.

 

And on emergency hospital stays: I keep a half-packed grab bag in case I need to go to the A&E. I've twice had to be admitted to hospital from the A&E -- once for a fever while neutropenic (very low neutrophils, but no ID of a specific infection), once for the diarrhea (ended up being an infection). Because of why I was admitted, I was given an isolation room both times. My grab bag has: ear plugs, earphones, moisturizer, wash cream (they have really drying gel in the hospital; my nurse recommended E45 emollient wash cream as chemo dries out your skin), lip balm, anti-bacterial hand sanitizer, tooth-cleaning stuff, sleep cap, non-slip socks, cardigan/scarf, extra phone battery, book(s), knitting. Never dawned on me to pack PJs! You're ahead of the game.

 

Sorry to go on for so long, but hope it has been somewhat helpful.

Member

Re: October 2018 Chemo starters

I’m doing well thanks, Aneeebel! Wound check went well this morning. After 2 weeks of delays, I finally have the green light to start chemo on Friday. Who would have thought I’d be really pleased to get started! 😂

Best of luck to all others starting this week. We’ve got this 💪💐💕
ktk
Member

Re: October 2018 Chemo starters

Hi Fiona and welcome!! You seem super well organised which will help you get your head around everything. The only thing I would perhaps think about is the Picc line. Even with good veins they can collapse with chemo and the Picc really does make everything easier. I wasn’t keen at first, but am so glad I had one and I have loved my Picc line covers. It doesn’t hurt and is easy to manage!

Have a look at what your cancer support centre offers too. Book yourself onto a Look Goid Feel Better course. These are very popular so need advance booking. Perhaps best when your brows have gone. Hair goes after a couple of weeks without cold cap but brows and lashes didn’t go until the T cycles.

Good luck with your treatment. Much love Kxx
Member

Re: October 2018 Chemo starters

Hi All

 

So, I start chemo on 26 October - I had the first meeting with the oncologist last week (TN IDC) Smiley Sad.  I'll be on FEC-T, but I'm not sure yet whether it's all FEC-T or some of FEC and then some of T.  I guess I'll have to ask that question on 25 October for the follow-up appointment, so thank you for mentioning this in your posts - I'm not sure when I'd have been aware of that. 

 

I'm reading all your comments and trying to prepare myself for whatever comes, currently waiting for the wig lady to phone me back with an appointment, headscarves galore on order or have arrived, sea-sickness band has arrived, as has ear thermometer.  PJs bought for emergency hospital stays (hopefully what won't happen but it's better to be prepared, isn't it) Smiley Wink.  Being a super-organised person, I want to create a chart with everything on it - sickness, nausea, temperature, appetite, blah blah blah.  Do you ladies know what else I should look out for each day?  I'm hoping that I'll get into a rhythm and know what to expect each cycle.

 

I was offered the cold cap but declined.  I also declined the PICC line but now, after reading some of your posts, I'm not sure that was a good thing to do.  I do have good veins in my hand though.  I guess I can change my mind after the first session?

 

I've got to have a clip fitted on Wednesday, and think I'm supposed to have an MRI scan but no date set for that yet.

 

I'm looking forward to actually getting on with treatment - we found Humphrey the lump on 31 August so it will be 2 months almost before treatment actually starts (all being well).  It seems like a long time but it's been interspersed with regular visits to the hospital for all sorts of scans and meetings. 

 

Blood test is booked at my GPs for 24th, then the follow-up meeting (which I presume is the assessment meeting you all seem to be referring to) on 25th, and hopefully start chemo on 26th.

 

Good luck to everyone here - you all help me greatly and I hope I can be there for you all too HeartHeart

 

Fiona xx

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Re: October 2018 Chemo starters

Reddi, it was a short Dvd as opposed to a video... I wouldn't say it was amazing but it was quite informative... Just a brief insight into who to contact if you had to call someone in an emergency, and info with regards to counselling etc 💗

 

Member

Re: October 2018 Chemo starters

To add to Meesh's hydration advice: I was counselled to aim for at least 2 litres of water. I've been doing that every day and more on the day before, day of, and day after chemo (plus herbal tea, decaf diluted coffee, occasional juice). And when I have fallen short, I have had more side effects.

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Re: October 2018 Chemo starters

So after a terrible nights sleep (I have so many weird dreams/nightmares at the moment) I have to say catching up and reading comments has really helped me already today Smiley Happy
Meesh73 thank you for sharing the tip about the water and Aneeebel thank you for sharing what happens at the pre-assessment, I’m hoping I feel better after that!
I do Pilates so def going to keep it up, I’m even going to try and keep up the running when I can, although I except it won’t be as far or fast! 💪🏻
Hope you all have a lovely day ❤️
Member

Re: October 2018 Chemo starters

A video! Amazing.

For my first pre-chemo assessment, I just got weighed and measured, reviewed general fitness, went through my questions with the oncologist, and had my breasts examined and my wounds checked (I was 1 week after bilateral sentinel lynph node biopsies). For subsequent appointments we run through everything but the wound check. I got my tour of the chemo unit and my chemo hotline info, including detailed discussion of side effects, during my first day of treatment. So it can vary from hospital to hospital.

I find the pre-chemo appointments most useful for asking questions -- I keep a running list through each cycle to ask at my next appointment. Things like test results, ways to mitigate a side effect (if possible), previewing next steps/tests, when/if to see a dentist, etc. And I leave space to write down answers or otherwise I forget!

One other idea: for big meetings -- treatment plan, chemo consent, etc. -- I have asked to record audio on my phone, so that I can listen again if I miss anything and follow-up with as much info as possible. The consultants have all been happy for me to do this. It was a tip suggested to me by my mother-in-law, who had breast cancer a few years ago and said that even with both her and her husband taking notes, they missed things, especially stuff related to medical jargon. I try to ask for a pause and explanation for unfamiliar jargon, but it's not always possible. And my OH isn't a big note-taker, so the audio was super helpful.
ktk
Member

Re: October 2018 Chemo starters

Hi all. Just to say it depends on your regime how long it will take. With my FEC it was delivered by a syringe pump via my Picc line. You have a saline infusion first, antiemetics, followed by the three different drugs ( if you have FEC the E is red and will make your pee red too!). Then another flush. All in all about two hours. The first session was longer as the Picc line was fitted, which was easy and painless and made for stress free delivery. You will be monitored all the way and there will be lots of people to chat to and distract you. As you go on you are likely to meet the same people each time so it becomes a bit of a club! Not so bad really. Kx
Member

Re: October 2018 Chemo starters

Hi Sar_ah

At the pre-assessment the nurse shows you the chemo unit, weighs you, measures your height, goes through yr treatment and potential side effects, answers any questions you may have so she should be able to help with your anemia queries, we were shown a little video and she gives you your emergency contact numbers if you need to get in touch with the unit for any reason.... Really helpful actually!
I also had a picc line put in my arm as I have terrible veins... It was actually a relief on Friday not to have needles poked around in my dodgy veins... And the nurses use the picc line to take blood tests too!
(I said I'm leaving it in forever in case I need more blood tests in the future! Haha!) And I know I sound ridiculously pleased about the picc line but it made such a difference! 😂😂

Good luck... Let us know how you get on xx 💗💪🏼

💗💗💗💗💗💗
Member

Re: October 2018 Chemo starters

Hi MoDo, glad I could help a bit 💗
It won't take that long every time... Usually 5 hours for me...
-my first drug took 90 mins to go through, then they wait 90 mins to check for side effects...the second one was an hour, then wait an hour for side effects... And so on... I had 4 bags in total but next time it won't take as long as I didn't have side effects so I can have them a bit quicker! 💪🏼💗

Thankyou ElliesMum... Yep, one down! How are you feeling? 💗💪🏼 X

💗💗💗💗💗💗
Member

Re: October 2018 Chemo starters

Hi ladies! Hope you don't mind me dropping by? Like Shi, I'm an oct 2017 lady. I'm er+ with no node involvement, I had surgery followed by 6 rounds of fec, rads and I'm now on tamoxifen. I cold capped fairly successfully through my chemo and I also worked. So if you've got any questions just let me know.

 

I was also very anxious and found yoga and meditation very helpful. I tried to do it every day even if it was just for 10 mins. My other tip would also be to make sure to drink plenty of water day before chemo, day of chemo and day after.

 

This forum is brilliant for support and I would say that the oct 2017 ladies kept me sane, but to be honest I think the chemo all turned us as mad as a box of 🐸 🐸 😂 Good luck!

Member

Re: October 2018 Chemo starters

Glad to hear your first session went well Aneeebel.
It’s so helpful to hear from people who have actually been though it.
I have my pre-assessment Tuesday and start Thursday. What happens at pre assessment? Is it just bloods, weight etc?
I suffer from anemia and a little worried what impact this will have on how I’m feeling, I forgot to ask the consultant when they told me I was having chemo 🤦‍♀️
Member

Re: October 2018 Chemo starters

Hi Aneeebel, thanks for sharing your experience. Well done on getting through it - one session down!

😘
Member

Re: October 2018 Chemo starters

Oh Aneebel, thanks so much for that.

That does help take the fear away a bit....💕

 

How come you were there from 8 - 5 ?

Does it take that long every time...

Member

Re: October 2018 Chemo starters

Hi MoDo

I had my first chemo treatment yesterday (Fri)... I was in a bit of a tiz as we probably all are..never having been through this before, but it all went smoothly!

 

Like the other ladies say... The first treatment is done very slowly, then you have a break to check for side effects... Then the next bag is attached... Have another break to check for side effects... And so on...

There is a nurse there all the time or there is a buzzer if you need help... 

 

I was was there from 8 until 5 so it was a long day but for all the right reasons!

I did have a massive headache which was probably to do with the 'not knowing' and totally shattered by the time I got home... But today I'm relatively okay today on the whole! 

 

Hope this helps you a little bit xx 💗💗

 

💗💪🏼💗💪🏼💗💪🏼💗

 

 

Member

Re: October 2018 Chemo starters

Hi Sue,

 

Thank you for your reassuring message regarding the chemo treatment, it does help to hear that the nurses will give it me slowly & keep a eye on me.

I really do hope the fear will subside after the first one.

 

And Yes, I'm having the medicine to kill off any random cells & Yes, that is good, it's VERY GOOD.

 Thank you so much....💕

 

 

 

 

 

Member

Re: October 2018 Chemo starters

Anxious-Soul - thank you for message.

 

Definitely need distractions as watching Atypical did help.

 

Need some suggestions for more series if anyone has any.

Don't feel up for doing much else at moment as still feel bit sore & weak.

 

Thanks for helping me A-S I was in a bad place.....💕

 

P.S. - I watched every episode by the way !!

 

 

 

 

 

 

 

 

 

 

 

Community Champion

Re: October 2018 Chemo starters

Hi Modo
Just popping into the thread..
It's perfectly normal to feel anxious at this incredibly difficult time. But I just wanted to reassure you that it will be OK. The chemo nurses have to go through all the potential side effects, but the reality is that it is all very unlikely. The chemo nurses will be with you every step of the way. They give the chemo very slowly and will watch for any adverse reaction and will be able to deal with it immediately. Most side effects afterwards, are fatigue and nausea. Not nice but very doable. You will find that after the first cycle, you will feel much better. It's the fear of the unknown which makes us anxious.
Try to focus on the positives. You are having the medicine to kill off any random cancer cells and that's good right?
You will get through this.
Sue xx
Member

Re: October 2018 Chemo starters

Good morning MoDo,

 

I am just dropping by to see how you're doing.

 

It sounds like binge watching atypical is working for you. Other distraction techniques will work for you, you have just got to figure out what activities will help and this may be trial and error.

 

I have lost count of the number of films I have watched and the number of drama series. The CBT counsellor gave me a worksheet and one of the questions was ' where is the evidence?' I found asking myself this useful.  We are different so this may not work for you.

 

Wishing you some calmer days ahead. Smiley Happy

Member

Re: October 2018 Chemo starters

Hi ElliesMum
My picc line went in fine... I don't know why I was so worried! 😇 I do have a 'sensitive disposition' but seriously it was okay...had the line put in then have an X-ray to check it was in the right place and Bobs your Uncle... And the added bonus of no needles in my dodgy veins on Friday, that made a big difference!
My first chemo treatment went well... Was a long day tho, I was there from 8 until 5! Again, as we don't know what to expect, it's all a bit scary....but I was fine and the nurses are lovely too! I did have a massive headache, which I've still got, and I feel a bit spaced out for want of a better expression but I feel fine on the whole!

Glad you're healing well... Good luck with your chemo!
Thanks for asking... 💗💪🏼💗💪🏼💗💪🏼💗 xx
Member

Re: October 2018 Chemo starters

Hi Purp22 and Sar_ah, I have a little one too! My little girl is 14 months old. Hopefully we can share ideas on how to manage chemo whilst caring for a little person/people! Minimising infection risk will be interesting... 🙈🤞

Xox
Member

Re: October 2018 Chemo starters

Sar_ah thanks for your reply, in some way the children can be a good distraction from chemo and side effects, that is what I am hoping anyway!

I took a towel, fluffy socks, scarf and blanket in preparation for the cold cap but didn't actually need them, the hospital provided a towel and blanket and they gave me a heat pad for my hand which seemed to be freezing too, that was enough and it was totally doable, I know everyone will find it different however but I am pleased I have given it a go and am keeping my fingers crossed I can keep some hair, we shall see! X
Member

Re: October 2018 Chemo starters

Thanks Ktk it’s helps having some idea of where to start, I’m going to def try the cold cap and get some scarfs in preparation and see how I go.
Purp22 I have a 2.5 year old daughter (and a 14year old son) so not quite as tiny we like you have lots of support but it is daunting thinking about day to day life! I’m just trying to look on the positive she may get extra time with the people who she loves and make the most of time we do get together Smiley Happy
Member

Re: October 2018 Chemo starters

Hello ladies I would like to join this thread please!

Quick info I am grade 3 IDC hormone negative, 36 years old with a 4.5 month old baby x

Had my first of four EC chemo's today, it was much better than I expected and glad I have done the first one now, I think I was working myself up with the unknown.

I tried the cold cap and didn't find it too bad although it did give me a bit of a headache and still have one now, I was expecting it to be worse than it was so am just hoping it was all on properly and doing its job! I have already bought a wig from my local hairdressers incase my hair does come out. Am very wary/nervous of what the next week will bring in terms of side effects as we all are i guess!
Also wondering how it is going to be looking after my
Baby boy, I have plenty of support and my husbands work has been great and he has plenty of time off with me, just wondering how other people coped with the side effects with young children?

Anyway I look forward to getting advice from others on this thread, and if I can offer any support to others, we have got this ladies! Xxx
Member

Re: October 2018 Chemo starters

Reddi,

Thank you for message, really appreciate it.

It helps me to hear I'm not on my own, I've been torturing myself. 

 

I will look up the book you recommended it sounds just right for me. I have some book tokens & will see if they have it in Waterstones, thank you for that.

 

I certainly over think things so this is magnified 100 fold, I have been trying to combat my anxiety - I watched several episodes of Atypical last night & I did calm down some.

 

Like you the anxiety has made me feel all sorts ( worse case scenarios ) which almost tip me over the edge.

 

Thanks for taking the time to help me Reddi, everyone is so kind & helpful on here.

This group has kept me sane, I've had so much support from day one.

I can't thank you all enough 💕

Member

Re: October 2018 Chemo starters

Dear MoDo,

I'm popping in from the June 2018 chemo starters thread. Right now in my chemo day unit getting cycle 5 of 7 -- and chemo is the first step in my treatment journey.

Reading your posts brought to mind the work of Susan Nolen-Hoeksema, who was a professor of psycholgy at Yale. She wrote a book maybe 15 or 20 years ago called Women Who Think Too Much that offers some concrete approaches for ending overthinking / ruminating spirals that can lead to anxiety and depression. It is complementary to cognitive behavioral therapy (CBT), though Susan's field was happiness research (she studied with Martin Seligman, U believe). I found the book very helpful and eye-opening. [Disclosure: I worked with Susan as an editor on one of herlater books, but not on this one, and not with her UK publisher, Piatkus.]

Even with a little arsenal of tools like this, I remain prone to anxiety. For instance, between the time of my diagnosis and presentation of my treatment plan -- a very long 36 days -- I started having a burning sensation across my chest into one of my shoulder, and I feared that it was the cancer spreading. It felt like my skin was feverish, and it was getting worse each day. During a lymph node biopsy I told the nurse and she demonstrated to me that my skin wasn't hot by placing her hands on me; in fact, my skin was noticeably cool in comparison. I then did visit the google and discovered that this was an anxiety response -- and as I worried about it, I became more anxious, setting off more nerve signals. Knowing this helped break the feedback cycle, and the burning sensation hasn't returned. It was especially helpful to talk it through with a professional counselor. I saw one at a charity based at my hospital (Helen Rollason Centre in North London).

I have also found some comfort in the rhythm of treatment -- and in asking the doctors and nurses questions to help me better understand both treatment and prognosis. At the same time, I've had to learn to accept inevitable delays and uncertainties; safety is foremost, and sometimes chemo must be delayed to give you body time to recoup before the next cycle. Rest easy, as you can, if this happens. The doctors' goal is to kerb the cancer, and they will always have this goal in mind as they set and reset your overall treatment plan.

I am so glad you are going to the drop-in clinic and am sure they will help you find tools to calm and quiet the brain.
ktk
Member

Re: October 2018 Chemo starters

Hi Sar_ah. Have you talked to your oncologist about cold cap. It can preserve your hair if you are prepared for the discomfort of an ice pack on your head for a couple of hours! Your local cancer support will guide you toward wigs. You get a voucher towards the cost from nhs. Personally I decided not to bother with a wig. Hair falls out about two weeks in if you don’t cold cap and you should be prepared to brave the shave rather than let it fall out in clumps around the house! I was lucky as my chemo hair loss was in the middle of our lovely summer so I just went bald! Now it is colder and my hair is starting to grow back fluffy I tend to wear semi shaped scarves from Amazon. Again your cancer support centre will probably stick some.

The thought of it all is far worse than the reality. Take all the help and support on offer and ask anything. Are you having FEC-T? Kxxx
Shi Community Champion
Community Champion

Re: October 2018 Chemo starters

Hi sar_ah, sorry you find yourself on here. Ask away on here any questions and if you go back a few pages mai7’s blog is very helpful too. On the wig front if you have a luv u babes dressing up shop near you have a look at their big wig selection that they have (not the fancy dress ones) I was happier in my £14.99 one from there than my real hair one that cost £1,000, just thought I’d let you know so you can save money. A tip for wig trying on is, get the one where you see you, you will know when it’s the one, but saying that I ended up with about 20, coloured ones, tinsel ones at Christmas the works, it was all steroid induced mind, but I have already warned about the shopping frenzies 🤪🤪🤪😁😁😁💕💕💕✨✨✨Shi xx
Member

Re: October 2018 Chemo starters

Hi everyone, I hope you don’t mind me jumping on the thread, I found out yesterday I’m due to start Chemo Thursday, we only found out a few days ago I would need chemo and I think I was in complete denial it would happen. 

To say I’m terrified would be an understatement, I have so many questions that I’m not actually sure what they are anymore 😳 but it has been really helpful reading others experiences, I’m not sure what I would have done otherwise!   I think my biggest fear is the whole loosing my hair, where do you even start with wigs and scarfs? Has any bought them already do you wait?

Member

Re: October 2018 Chemo starters

Thanks ElliesMum,

 

I have spoke to Maggie's today & they have specialist nurses & a clinical psychologist there each day, it's a drop in centre so I'm going to go there.

I have calmed down some but still extremely anxious. 

 

Glad you have no sign of infection, I'll be one/two weeks behind you as my first chemo will be 24th.....😮 xxx

 

 

Member

Re: October 2018 Chemo starters

How was your picc line insertion, Aneeebel? Thinking of you and wishing you well for your first chemo today. You’ve got this! 💪💐🤞

I hope you’ve managed to get in touch with someone from your team, MoDo, to help with your concerns. We’re all here to help each other through!

The emergency removal of my implant went well. Wound is healing nicely, no more signs of infection. Fingers crossed chemo can finally start next week! (Or, failing that, on the 19th.)

Xox 😘
Member

Re: October 2018 Chemo starters

ktk... Thankyou for your advice, I'll bear it in mind! 💗💗 xx
Member

Re: October 2018 Chemo starters

You're welcome MoDo.

 

Remember to tell the NHS staff you're highly anxious and they will response with compassion and understanding.

 

This is doable. You can do this. Smiley Happy