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February 2020 Chemo Starters

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Re: February 2020 Chemo Starters

Hi Tracy 

Hope you are feeling ok and i understand what you mean about your job . It hard when you start some where new but im sure they will understand . You need to put all your energy into feeling better . I love Scotland . We went to Edinburgh  for the xmas market and to Glasgow  shopping  numerous times last year .My partner supports Cowdenbeath Football Team as well as our home team Wolverhampton  Wanderers ! 

So he goes up regularly. 

I wonder if its different areas that do the regime in different orders. It seems like  chemo is given to shrink tumour to make it easier for surgery. Mine is TNBC Grade 3 with 3 Nodes under Arm.

It still feels so sureal walking into the chemo unit. 

Have you got a good support system ? Im lucky has got a very supportive family . My children have been so supportive i have a daughter aged 18 and a Son aged 15. 

My daughter is due to start university in September so i need to  hopefully be all sorted by then ! 

Im going to try Podcast again tonight as need to be awake to get to Chemo for 830 am . ( always feel anxious the night before although i cant wait to get it done).

Hope tomorrow is a better day for you and be kind to yourself rest when you need too. 

Love 

Daisy xx

 

 

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Re: February 2020 Chemo Starters

Artycart, TNBC often has chemo first in order to try to shrink the cancer and because it’s our main weapon since we can’t have hormone treatment. If the lump is big or in nodes or close to the skin or chest wall, chemo can make it more manageable to remove later. We also get to know if chemo worked or not, if not like me then there is the option of oral chemo xx

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Re: February 2020 Chemo Starters

Hi Daisy,

I’m still a bit in the dark as to what will be happening with me after the chemo is done. It will probably be a mastectomy too if I get a choice! and like you I just want to get to that point too although I’m not dealing with the pain you have. I wonder why we are having the chemo in a different order? I’m up in Scotland and had recently started a new full time job before finding out I had tnbc about two and a half weeks ago. I’ve had a bit of a sofa day not feeling too great today but hopefully a bit better tomorrow. Having to have time off work is not me at all... I feel so guilty about leaving them short staffed. I hope you’ve got plenty of help with everything. Xx Tracy

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Re: February 2020 Chemo Starters

Hi Tracy 

Try the podcast see if it helps. I will try it again tonight. It looks like we have simular regime but the other way round. I cant wait to get the chemo done so can get surgery over ! 

Did they say what surgery you might need ? They think mine is a mastectomy . I just find it difficult waiting.  Pain is driving me insane at moment as just so limiting

 I miss doing everyday house work ( never thought id say that !!). Also missing working . There was never enough time in the day with 2 children but now clock watching . 

Hope you have had a good day today

Where about in the country are you ,? Im Wolverhanpton west Midlands 

Love 

Daisy xxx

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Re: February 2020 Chemo Starters

Good luck for tomorrow Vasanthy . Ive got paclitaxel and carboplatin  tomorrow . I found last time i ached from the injections too 

 

Love Daisy xx

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Re: February 2020 Chemo Starters

Hope it goes ok Vasnathy. I had second FEC on Thursday and been ok over the weekend until today but hoping it’ll just be the one day of aching again then I’ll pick back up again like last time. 

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Re: February 2020 Chemo Starters

I am going to have my 2Nd FEC tomorrow. Fingers crossed

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Re: February 2020 Chemo Starters

Glad you’ve got the first one down Vornesta and that it went ok. Hope you get some rest. I’m currently enjoying the joys of not being able to think clearly whilst aching from head to toe from white blood cell boosting injection and trying to write coherent work emails. Bring on bed time!!!!

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Re: February 2020 Chemo Starters

1st ec down- boom! Feel tired and a little queasy. May just sleep when I get home

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Re: February 2020 Chemo Starters

Hi Daisy,

The Calm podcast sounds interesting. I will definitely have a look for that. I am getting EC by cannula into the back of my hand every three weeks then changing to PC weekly for I think three weeks and then surgery if the lump has shrunk down enough. How are you feeling today? Hope you’re managing to sleep. 
Tracy

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Re: February 2020 Chemo Starters

Hi Tracy and vornsta

Thank you both for all your ideas. I tried the Podcast called Calm last night which tells short stories .it was via the spotify app . I will also try some more audio books too. I havent got a fixed genre for reading i like most things apart from horror / Crime. I enjoy autobiography too. ( Peter Kay being one of my favourites)

Will look into the mindfulness app too thank you Vornsta.

It seems as though we are receiving the same treatment Tracy  but in the opposite way round. Glad your first EC went ok . Is that administered via drip ? . Are u having surgery after Chemo ? 

Sending you best wishes 

Daisy x

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Re: February 2020 Chemo Starters

Hi Vornsta,

Thank you for the ideas. I’ll definitely try the app and have a look for some podcasts to listen to. Would especially help at night when I can’t get back to sleep 😴 Good luck with your treatment xx

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Re: February 2020 Chemo Starters

Sorry to hear about your pain Daisy and your worrying Artycart. Have you tried mindfulness tracks? There are apps and lots of stuff on you tube. I like an app called insight timer which has loads of free meditations and visualisations. Also might be worth exploring the world of podcasts if that appeals. There are sooo many of all varieties- funny, educational, chatty. Like the radio but you choose the content.

best wishes to everyone

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Re: February 2020 Chemo Starters

You’re welcome. I’ve just had my first EC treatment on Friday which went fine and I haven’t had many side effects so far.  But since then I’ve been worrying constantly. Yesterday my heart felt like it was racing and today I seem to have a little bit of a cough... After the EC I will be going onto Pacitaxel and Carboplatin too. It is very difficult to keep your thoughts from running away with you but I think I might try some audio books too! What sort of books do you like? Can you recommend any you’ve read? I’m pretty open to reading almost any genre. I recently read Ant Middleton’s book The Fear Bubble which was interesting and I’m currently reading Two Brothers by Ben Elton which I’m enjoying. Tracy xx

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Re: February 2020 Chemo Starters

Hi Tracy 

Thank you so much for taking the time to reply. I will get some audio books to try as they may help to try to get to sleep as im struggling with that too at the moment. I end up lying there all night trying not to get anxious as its a round circle.

Hope you are doing ok with your treatment too.

My next on is on Tuesday for the pacitaxel and carboplatin . This will be number 4. Cycle 2 . Im hoping that this one will give me some relief from the pain and shrink it off my nerve. 

Im a bit nervous regarding Side effects as was poorly last time but i think it may have been in relation to the fentanyl pain patches instead. 

Sending you lots of love 

Daisy xxx

 

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Re: February 2020 Chemo Starters

Hi Daisy D,

Sorry to hear you’re having such a rough time. I don’t know if you are keen on them but I find playing games on my phone or iPad helps me to take my mind off things but I will usually combine tv watching with several other things like drawing, colouring books which are quite relaxing or knitting but I get that you’re not into that. Have you tried colouring books? I have some Johanna Basford ones which I can get quite engrossed in because they are quite intricate and detailed... Or how about some audio books? It might be easier to relax if you can just lie there and listen to someone else read to you. All the best with your treatment xx Tracy 

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Re: February 2020 Chemo Starters

Hi 

Does anyone have any ideas how to keep mind occupied. Due to the pain which only subsides when im lying flat im unable to get out and im usually a busy. I used to love reading but find it difficult to concentrate at the moment 

Im not a knitter or jigsaw person . Im finding this so difficult being off work and not able to be mum taxi to my children. 

It just feels that im sitting her waiting for treatment for May for treatment to finish .

Sorry if i sound negative i just hoped i would be feeling better . Im on 4th treatment on Tuesday so hopefully that may  help to shrink it off the nerve to give me some relief from the pain as its just so wearing .

Best wishes to you all.

Thanks 

Daisy  xx

 

 

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Re: February 2020 Chemo Starters

Great news artycart ❤️ Always check with your units ❤️ If your wee starts to burn but no temp it’ll need antibiotics not just a bit of cranberry juice ❤️My phone was like the bat phone, I was onto them about anything that didn’t feel right  even with no temp, they don’t mind and are happy that you are being vigilant while going through chemo ❤️ Rest up and keep your fluids up, it helps flush things through ❤️❤️ 💕💕Shi xx

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Re: February 2020 Chemo Starters

Hi Artycart

Good to hear you're all ok. Just thought I'd let you know you're not alone with racing heart, I had my 2nd weekly Paclitaxel on  Thursday and both times I've had racing heart and palpitations...Onc seemed to think it's due to steroids but told me nothing to worry about❤😘

 

Good luck for Monday Vornsta😘

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Re: February 2020 Chemo Starters

Thank you ladies 😘

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Re: February 2020 Chemo Starters

Thank you Shi ❤️ All checked out and allowed to go home now... thank goodness says my poor Other Half! 
Hi Vornsta, nice to meet you though I’m sorry it’s in these circumstances. I just had my first EC yesterday. It was fine and I had antisickness capsule half an hour before. So far haven’t needed to take any of the tablets they sent me home with. Good luck for Monday and let us know how you get on xx Artycart

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Re: February 2020 Chemo Starters

Definitely echo what Shi says! Have to listen to your body and don’t push yourself too much although I’m also a firm believer in keeping as active as your mind and body will allow. Also, big learning curve for me has been to accept support from others and ask for help when you need it!!

keep in touch x

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Re: February 2020 Chemo Starters

Sending ❤️Artycart, always right thing to do getting checked ❤️ Please let us know how you get on ❤️Hi vornsta, pace yourself and listen to your body, always use your rapid response number even if no temperature and something doesn’t feel right, if you antisickness meds don’t work don’t struggle, tell your team they will tweak your meds ❤️ The feb thread are amazing and 👭 getting through together, keep focused and take it one treatment at a time ❤️💕💕Shi xx

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Re: February 2020 Chemo Starters

Hello everyone! I start EC on Monday at Guys. Feeling pretty scared to be honest 😳 I have er+pr+ her- had smx plus diep recon and they found cancer in 4 lymph nodes. I am trying fasting pre chemo. Good luck to all those undertaking chemo 💪🤞

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Re: February 2020 Chemo Starters

Glad u decided to get checked. Hope they don’t keep you in too long xx

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Re: February 2020 Chemo Starters

Thank you both for your advice.  I’m currently lying in a hospital bed getting checked out. Think it’s all ok so hopefully be able to go soon once I’ve seen the doctor. Thomaschix - Hope you’re feeling better soon xx 

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Re: February 2020 Chemo Starters

👍 always ring rapid response if something feels different even without temp 👍 better to check to be safe 👍 I know normally no one likes to make a fuss and just carry on regardless but chemo is different and being vigilant and being aware will help you help yourself and your teams get you through safe 😁 and you’ve everyone on here for ❤️👭❤️ Fabulous craft photos 👍 very talented ❤️ 💕💕Shi xx

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Re: February 2020 Chemo Starters

Morning Artycat

Glad to hear all went well with your first treatment yesterday. I had my second FEC on Thursday and thankfully it went a lot smoother than my first but feeling pretty wiped out today.

My philosophy is anything you are unsure about then phone up. That’s what the team are there for and in my opinion it’s better to check and it be nothing than not to check and be something you should get help with. I think all the meds they give us have more of an effect than we realise so hopefully it’s just a normal side effect maybe with some residual anxiety from what’s a pretty stressful day!!

hope you have a quiet day planned. Hugs xx

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Re: February 2020 Chemo Starters

Hi everyone,

I had my first chemo EC yesterday. It all went well... but last night my heart felt like it was beating faster than normal. Is this something I should be calling the helpline about?

tracy xx


PS - Grest artwork Sarah,

I like your figure paintings combined with the stitching. And the wire work ring is great... I used to make chain maille bracelets which is very therapeutic to do xx 

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Re: February 2020 Chemo Starters

Sounds like we have a lot in common Artycart  🙂

 

I used to make a ton of jewellery, still have all the kit and would like to get back into it one day.  I mainly did chain maille, and other stuff with silver or copper wire.  I got really into etching and metal stamping at one point.

lonhhaul_ring.jpg

 

etching_closeup.jpg

samsbracelet.jpg

 

(I uploaded these pics on my phone, apologies if they look huge on a computer screen!)

 

But nowadays mainly I paint (mostly acrylics with a lot of mixed media/collage stuff going on, and sometimes some embroidery in the mix)

 

I also make little books and comicsSLICED-9-COVER 800 (1).jpg

 

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Sorry for taking this thread rather off topic!!

 

All the very best to those of you still to have chemo #1, and I hope that those who have already taken that plunge aren't feeling too rough from it.

 

Sarah x

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Re: February 2020 Chemo Starters

Hello Implausible,

*waves back*
I am a jeweller but I also paint and do loads of other arts and crafts. I haven’t been offered anything other than cannulas and my hospital told me that is what they use. I will ask though as I’m having longer than most chemo. What type of painting do you do? I have done lots of water colour, some acrylics and I also love drawing with any medium. 

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Re: February 2020 Chemo Starters

Artycart - fellow dabbler in the arts here, *waves* 

 

One of the things I was really worried about before all this started was if my right hand wouldn't be so dextrous if I got lymphdoema, as I paint a lot of quite small, detailed things, and would be lost without it

 

Touch wood, so far, no problems.  Make sure you do all the arm exercises they give you after surgery.

 

What kind of art do you do?

 

Oh and if you have the option of a PICC line or portacath (I had the latter) rather than cannulas for the chemo, go for it, saves them having to fight for a vein each time 

 

 

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Re: February 2020 Chemo Starters

Aw you’re too old for my groups so don’t worry about missing out! I’ve got once for people under 50 and one under 40 but they let me sneak in!

 

Paclitaxel usually goes with Carboplatin but I had Docetaxel. You’ll only need Cape if you don’t get a good response to chemo and even then sometimes they only give it if nodes are involved too. The tablets really aren’t that bad it’s just a bit unpredictable how I’m going to be each day which is frustrating. Definitely go to Maggie’s there are loads of things there plus tea and cake!

 

If you are on Facebook there are a couple of TNBC groups but they have people who are stage 4 so it can be hard going sometimes. But you can ask anything at all there and you’ll get plenty of replies xx

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Re: February 2020 Chemo Starters

Ah that’s a shame. I will need to look for some groups in Aberdeen. I know Maggie’s Centre have BC group meetings and it’s a lovely calming place so will probably try that. Sorry to hear you’re having trouble with the chemo tablets and don’t feel too great. It’s to be expected I’ve been told. I think I will be getting those too after the two courses of chemo. First EC then Paclitaxel and... can’t remember the other drug. So far I’ve been told that they hadn’t seen anything in my nodes but at this point I’m not able to deal with all the detail of my situation. I’ve just turned 50 and found the lump while on holiday for my birthday in November. It’s quite large about 4.5cm and a mixture of DCIS and TNBC. I’ve had a bone scan and due to have a CT scan next week and those are the results I just don’t want to hear... I will be trying the cold cap tomorrow. Met a lovely lady yesterday who was using it and said it wasn’t too bad once she got past the first ten minutes and warned of icicles on your head afterwards! 
Thank you for the advice about the cannulas. I will try to stick to one arm and see how I go. I’m an artist and I’d like to keep my right arm fairly pain free if at all possible. Tracy 😉

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Re: February 2020 Chemo Starters

Aw you’re a fair way away, was hoping you could join my two groups in Edinburgh but it would be a trek! I’m ok, my stomach keeps objecting to my tablets and it’s worse the week I don’t take them! Can get a bit tired and down but I have a lot of other rubbish going on too so who knows which it’s down to.

 

Yes the first one is daunting. With FEC they have to push it into you in big syringes so you have nurses with you all the time. Are you doing cold cap and are you using a cannula or PICC? My veins were never great but having chemo has made them even worse! If you can take it I would recommend having it all in the same arm if there is any suggestion it’s in your nodes and you need a clearance. I now can only have blood taken from the bad side, nothing put in so no injections or cannulas for scans and no blood pressure. I got sore veins and decided to try to use both sides equally to give them a break, but now they’re both pretty rubbish which isn’t great when I need bloods tests every three weeks before my oral chemo! Was hopeful the chemo would wipe out the cancer in the lymph nodes but not to be.

 

I’m not sure what groups are up in Aberdeen. How old are you? xx

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Re: February 2020 Chemo Starters

Hi Edinbird,

I hadn’t twigged by your name but it makes a lot of sense now! I’m a wee bit south of Aberdeen. I was down in Edinburgh with my friend just about two weeks ago...love Edinburgh. How are you now? I’m have my first chemo tomorrow and I think I’m ready but still lots of unknowns at the moment x Artycart

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Re: February 2020 Chemo Starters

Artycart just reading through, where are you in Scotland? I’m in Edinburgh as you maybe can tell by my name! xx

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Re: February 2020 Chemo Starters

Thank you to all you lovely ladies who have posted your experience a year on .It is so helpful and makes this difficult time much easier knowing that there is light at the end of all of this.

Im having trouble sleeping and developed a cough which doesnt help . Had a chest xray but no told dr will let me know if any problems. Currently trying a vaporiser to see if helps.

 

Love 

Daisy x

 

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Re: February 2020 Chemo Starters

Its really weird seeing everyone post their stories a year on.  I had a therapeutic mammoplasty as my first surgery then a full axillary clearance and margin shaves after that as they found DCIS surrounding my tumour.  I think us Feb 19 girlies have been through every scenario between us so just ask away

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Re: February 2020 Chemo Starters

You could also enquire if a therapeutic mammoplasty would be option on the op front too when the time comes, just another option you could consider, they take it out and reshape boob, just wanted to let you know ❤️💕💕Shi xx

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Re: February 2020 Chemo Starters

Edinbird, I've never seen that photo of you with the cold cap on before, it's ace 😄

 

Hi Daisy D

 

I did exactly the same, got my long hair cut off a few days before starting chemo. They said it would make the cold cap work better (closer contact with the skin and follicles I guess?), and also I figured if it was going to fall out, I'd be less upset seeing short hairs fall than big clumps of long hair.

 

As it turned out I didn't much like the short hair cut, and so when I did give up on the cold cap and go bald, it wasn't that traumatic, as really I felt like I had already said goodbye to my hair when I had the preemptive haircut.

 

As for lumpectomy vs mastectomy, there are lots of factors in that decision. But one is down to the size of the lump and how big your boobies are. If it is a big lump and your boobs are not super big, they don't always have enough left to work with.... the position of the tumour matters too.

 

Because mine was biggish at 3cm my surgeon said she would have struggled if I had smaller boobs (I was a DD cup before the surgery, now I'm a C).

 

She still wasn't sure even going into surgery if she could successfully do a lumpectomy so i had to sign a thing saying if she couldn't I was happy for her to proceed to mastectomy straight away without waking me up to check and rescheduling for another time.

 

So the very first thing I did when I came round from the general anaesthetic was peek under my gown to see whether or not I still had a boob!!

 

In your case, given you don't yet know how much it will have shrunk by by the time you have finished chemo, I don't think it would be unreasonable of you to ask them to reassess after chemo is done to see if a lumpectomy could be an option.... or at least explain better why it isn't....

 

Sarah

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Re: February 2020 Chemo Starters

Hi all xx I started my chemo a year and a day ago so just before Implausibie. I’m triple negative so I had chemo first. 6 rounds of FEC-T. My lump was 15mm and I had two nodes involved from the start. I went to the doctor in October 2018 as my nipple had started behaving oddly and looking like a rolo when I lifted my arm! No one seemed very concerned (I’m 40 so they probably thought it was just lumpy boobs or a cyst). Anyway I persisted with them and got referred and then found out the lump was growing just because. I did cold cap and it worked well, thinned out on top and just wore baseball caps all summer. T put me into menopause for about 5 months which was the worst thing for me as I couldn’t sleep more than 2 hours at a time. T made me very achy and my legs didn’t really start working again until August. I had a lumpectomy where they found DCIS, still two nodes positive and a third of the lump still cancerous. So instead of moving onto rads and being done I had to go back for a re-excision and a clearance then rads and now I’m on Capecitabine, oral chemo. It’s not too bad it just messes with my stomach a lot. Got three months left of that so I went from expecting 7 months of treatment to ending up with 15 😞 but since triple negative stops me having any hormone treatments I’ll take whatever I can get. Including an aspirin trial hopefully (my veins were too messed up to get enough blood for a triple negative specific one boo).

 

I’ll post some pictures so you can see how the cold cap worked for me. I just had a sore head for about 10 mins and it was bearable after that.

 

Good luck everyone, it really feels a lifetime ago now but you can do it! I’m still on chemo but I was effectively cured in August 😊

 

Before chemo had my eyebrows done with semipermanent makeup and I never lost them!Before chemo had my eyebrows done with semipermanent makeup and I never lost them!

 

Cold capCold cap

 

Me last May with two chemos to goMe last May with two chemos to go

 

This was the worst the thinning gotThis was the worst the thinning got

 

A week after my last chemo in JuneA week after my last chemo in June

 

August just before op 2August just before op 2

 

Mid August and all the badly bits filled inMid August and all the badly bits filled in

 

Curly underneath! Where the cap didn’t reachCurly underneath! Where the cap didn’t reach

 

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Re: February 2020 Chemo Starters

Hi Susie b and implausible

Thank you so so much for all the information.  You have really helped me to keep my spirits up. Its so nice to hear that you are both doing so well.

Ive had my long hair cut today into short bob and donating my hair to the princess trust. I was relieved to get it cut before it falls out as i think that would upset me more.

Thank you implausible for sharing your experiences and lovely pictures and hope New york was fun you certainly look like you enjoy life and i love all the colours of yout hair too. 

I have also got a wig too if and when that times comes.

Thanks for advice regarding breaking down the chemo sessions. My daughter has made me a chart to tick each one off. 3 down 15 left to go ! 

Im keeping my fluid levels up and resting . 

Can i ask how long following the end of chemo did your surgery take place ? 

Also at the start did they say lumpectomy? I was just wondering as they seem pretty certain i would be a mastectomy i need even with chemo first. The tumour is 5.6cm x 4.8cm with 3 nodes . 

Thank you again so much you have both made me feel stronger and more in control today .

Love 

Daisy D xxxx

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Re: February 2020 Chemo Starters

Hi Daisy D

 

Firstly I hope that as time goes by and you tumour begins to shrink that the chest pain will begin to subside. Regarding scans being taken throughout your treatment that seems to vary between hospitals. In my case I had an ultra sound scan after the second chemo session which showed the tumour, which I named Gremlin, had shrunk and it had also started to feel spongey. I had 4 rounds of FEC prior to surgery, 4 rounds of TC after surgery. For me chemo wasn't too much of a problem. You'll find that as time goes on and you chat more with the others in your group that everyone is different in how their body reacts to chemo. The main thing is to check your temperature daily, keep your fluids up even if they taste awful, and get plenty of rest. My hospital is of the opinion that prevention is better than cure so I was given the best anti sickness drugs so never felt sick. As for surgery, I was terrified. The girls in my group, who'd already had surgery, were so supportive and assured me that surgery was easier than chemo. And it was. One minute I was being prepped for surgery, the next I was in the recovery room. I wasn't aware of when the aneasethic went in. As I had a lumpectomy and full ANC (anxcillary node clearance) I was admitted in the morning, surgery 11:30, back home eating fish and chips at 5:30 pm.  I didn't experience any pain. I'll ask if someone in our group can give you some information about MX. Something else I found helpful was to concentrate on each stage as it happened rather than thinking about what was to come next. So for now think about the chemo you are having. Divide everything into little chunks.

 

One of the girls in our group has written a piece for you all so hopefully you'll all gain something from that. We were and still are a very chatty group. We're all here for you. Be strong and stay strong. You can do this.

 

Susie B xx

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Re: February 2020 Chemo Starters

Hi to all the Feb 2020 ladies

 

I'm from the Feb 2019 group - and in fact today is the anniversary of my first chemo dose last year

I thought this would be an appropriate moment for me to pop on, wish you all well, tell you a little about how the last year has gone for me, and hopefully offer you all some reassurance about the months ahead

 

Reading through your posts so far I can see that you are exactly where we all were last year, worried sick, desperate for information, wondering if we would lose our hair or not 🙂 The last one feels trivial, in a way, but it SO isn't, it was all I thought about! 🙂

 

A quick summary of my circumstances, in case there are any of you similar, if so, if you have any questions at all, please do fire away.  And I'll pop back in here once in a while in case I can help with anything.

 

I was diagnosed a week before Christmas 2018, having found the (pretty big, 3cm) lump myself. I had recently lost nearly 5 stone in weight and the docs reckon it had been there for well over a year (I was 52 but hadn't yet been called for a mammogram), but my previously big fat boobs had hidden it 😕

 

I had a lumpectomy mid Jan, and then started chemo mid Feb - 3 x FEC then 3 x T, 3 week cycles.

 

I was nervous as hell, but it wasn't TOO bad - never had any nausea or throwing up, which was what I was dreading the most. The main side effects were fatigue, photosensitivity (I sometimes had to wear sunglasses to go out for a walk as the light really bothered me, but that was only with FEC and only for a couple of days per cycle), and the fact that all food except cheddar cheese tasted disgusting 🙂 I pretty much lived on cheese toasties for the whole 4.5 months (and consequently put back 3 and a half stone of the weight I'd only just lost!! - but I'm happy to report that I have since lost it all again)

 

All in all, in my experience it was more of a dragged out permanent feeling-pretty-rubbish-and-knackered thing than anything totally game changing, side effect wise. It does get you down though.

 

I went back to work from the 2nd cycle onwards, as I only got 8 weeks sick leave, and had used all that up with my surgery and first chemo cycle. So that added to the fatigue, but also gave me something to do and stopped me wallowing, so I don't think it was entirely a bad thing. Hopefully you have all got better sick provision at your jobs though! I did work from home in the middle week of each cycle though because that's the week when your immunity is most compromised, and I didn't want to catch any office lurgies.

 

I cold capped - but unfortunately for me it didn't really work, my hair thinned out to almost nothing and looked blinking awful, so at cycle 3 I decided to ditch the cap and shave my head. You know what? I didn't entirely hate it!!! 🙂

 

chemo_cold_cap.jpgchemo_bald_is_fun.jpg

 

I didn't bother with a wig, instead I bought a fake fringe with velcro on it, and stuck inside a little peaked cap, it looked really realistic, and it was much more comfortable/less hot and itchy than a wig. (I coloured it in myself with sharpie pens to match the colours I used to dye my hair, everyone thought it was real! You can obviously get them in more standard colours too 🙂 )

 

chemo_fakefringe.jpg

 

This is what I looked like by the end, no eyelashes, hardly any brows, weird bum fluff starting to grow back on top. Not a pretty sight! But as Deano reassured you a week or so back, you honestly don't look a state like this for long, I promise 🙂 My lashes grew back really quick, brows still aren't as dark and full as they were before, but they are getting there. and hair grows back at a rate of knots!

 

chemo_end_of_chemo.jpglast chemo day!  I'm SO fat :)last chemo day! I'm SO fat 🙂

 

Here's me a few weeks ago - so about 7 and a half months after finishing chemo.

 

7.5 months after chemo: lashes, check, brows, check, hair, check :)7.5 months after chemo: lashes, check, brows, check, hair, check 🙂about 4 months after chemoabout 4 months after chemo


And this much shorter haired pic is from mid October (when I took myself off to New York for a week on my own to celebrate getting through it all 🙂 ) . So it has grown loads in just over 3 months.

 

I'm specifically sharing hair pics as I used to spend HOURS during chemo googling hair regrowth photos to see how quickly mine would grow back, and I'm sure it's on your minds too. Or am I the only horribly vain one?? 😄

 

I walked every day during chemo - as our Daisy Di (not to be confused with new Daisy D!) said, it really does help. Keep as active as you can. Don't eat as many cheese sandwiches as I did. Keep positive, keep smiling, keep taking your temperature, avoid germy people, and you'll be through this in no time!

 

As for recovery after chemo - it (and the radiotherapy after) did leave me feeling weak as a KITTEN, which was annoying as I had been a bit of a gym bunny before. Well I am now on a crusade to build my strength back up - and since last November (I had to wait until after my last bit of surgery in October 2019), I've been back at the gym on a real mission 🙂 I have lost all the weight I put on during chemo, with interest. And I feel really fit and strong.

 

I do weight training 3 times a week, and also aqua aerobics, swimming and zumba, and lots of walking. I've even signed up for 2 10k runs this year! (although I'll probably walk most of it both times 🙂 )

 

So when you get to the point that you feel utterly drained, and wonder if you will ever again have the energy to walk up a small hill, or stay up past 6pm, please be reassured, a year from now you could be feeling as good as, if not better than, you felt before all this started.

 

Sorry this was a long read, but I was always really inspired by the stories of people from the Feb 2018 thread (a year ahead of me) when I saw them signing up for the Race For Life and similar, and sharing pics of their hair growing back (again with the hair!) and stuff, so I wanted to give you ladies a similar little boost, if possible.

 

Lots of love and support, Sarah x

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Re: February 2020 Chemo Starters

Aloha Ladies,

I have been meaning to come on in and post and get involved in this wonderful support group, but i am terrible about time management and getting on her to respond.... but i am gonna try my best!!

i am new to this site and newly diagnosed with BC in December. Found lump myself. Had full mastectomy on Jan 2nd, and cancer had spread to lymphs and tumor was 7 cm!!!  i have a breast expander in place and will eventually be completing reconstruction. 

Needless to say i was told chemo & radiation will be inevitable.  I just had bone scan and CT scan last week as well as had a port put in my chest area last Tuesday. First chemo treatment started yesterday 2/17/20. Surprisingly i feel ok today, but i think it was due to all the anti-emetic medications they pump me with prior to chemo.  I will be have 8 cycle of AC every other week and 8 cycles of Taxol to follow. And radiation to follow that.  My oncologist said i will lose my hair likely by week 2, so i proactively chopped my hair off. My hair was down to my waist and i cut it to a short bob. Im hoping it will make it a less traumatic transition. (???) In fact, i may even buzz it once the majority starts to come out.  Any other suggestions?

i am so thankful to have a place to share my story with others who truly understand all the feelings of fear, of anxiety, of hope and of gratitude! Most of my blended family children are older and is out of house, (mostly- lol) but i still have a young 10yr old at home who has some special needs so it has been a difficult process for us. 

Anyway, thanks for listening. Heart

~JustMe2

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Community Champion

Re: February 2020 Chemo Starters

Thomaschix, sorry to hear you have gene that predisposes you to another form of cancer. I wanted to know so I could take additional preventative surgery if necessary and also to protect other family members if I did have the gene, it would have given them choices themselves then. Not everyone wants the test and that’s everyone’s individual choice, everyone has to do what’s right for them as it’s your journey and you always do what’s right for you ❤️❤️💕💕Shi xx

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Re: February 2020 Chemo Starters


@Shi wrote:

Thonaschix I got my results within a couple of months. Even though I was tnbc I did not have the brca gene. I know some others get tested for other gene too Along with brca gene, sorry I can’t remember what they are but you should be able to find out if you phone them number on here or ask the nurse or discuss with your team ❤️Hope this helps 💕💕Shi xx


Thanks Shi. I’ve been referred to genetics team so will see what they say. I already have a genetic mutation which predisposes me to another type of cancer (from my dad) so I’m on the teams books so to speak. I just want to know sooner rather than later in case it turns single mastectomy into double. Got a few months till need to cross that bridge tho.

thanks for letting me know your experience and glad it was a negative result for you! 

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Re: February 2020 Chemo Starters

Hi 

I have just had my 3rd weekly chemo today . All ok apart from chest pain ( tumour pressing on a nerve ) and shattered  Had  to also have a chest xray today as i developed a cough. Its driving me mad as disturbing sleep. Im currently trying a vaporiser to see if that helps. 

Does the ongologist review how chemo is going at different stages through the chemo

 

 

and is  this normally done via ct scan ? 

 Does anyone experience chest pain caused by tumour pressing on a nerve ?( The pain radiates from mid sternum across top of breast. That why i was orginally missed diagnosed with chostochondrotis  obviously not wishing any one any pain or discomfort )

Susie B 

How are you feeling now ? 

How did you cope with chemo and your surgery ? I really cant wait to get to the surgery to get all over.  Im a bit of a planner type of person and finding it  really difficult being in the house all the time at moment due to predominantly with the chest pain .

How long did u have to stay in hospital for your surgery and how long was the recovery ? 

The plan with me  i believe is chemo then mastectomy.  

 

Thank you for any information and support.

Sending you all lots of love and best wishes xx

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Community Champion

Re: February 2020 Chemo Starters

Thonaschix I got my results within a couple of months. Even though I was tnbc I did not have the brca gene. I know some others get tested for other gene too Along with brca gene, sorry I can’t remember what they are but you should be able to find out if you phone them number on here or ask the nurse or discuss with your team ❤️Hope this helps 💕💕Shi xx