Starting chemo in February

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Morning all,

Al hope you are feeling ok, i noticed on another thread something you said about not having any scans, i too have never had a scan cept the heart one we all have before starting chemo. I had one node involved out of 13 removed but no scans ever mentioned, have also been a bit concerned that they have never been offered.

Lisa, sorry you are struggling, number 5 seems to have been a bad one for all wether FEC EC or Tax,think our bodies are saying enough already! I too had issues with the only one more to go or its your last on i got quite cross with people in the end and said no its my sixth and it does not mean it is any easier to do than any of the others ! Yep the 18th will be here before you know it, look how quick time has gone since we started! Get that holiday booked girl!!

Lizzy glad you are feeling better and the sun is shining in Spain. You must speak bloomin good spanish to be able to understand all the medical jargon, i struggle enough to understand it in English!

Adi i hope you are ok and not struggling with s’e s

Me and OH started planning a mammoth road trip on the bike last night. In September we are booked to go see Motogp in San Merino so have decided to make a fortnight of it. Go down thru Germany to Italy stay couple of nights for Motogp then head down to South of France, have booked a caravan (not stayed in one since i was 6!)near Antibes for five nights, then slowly back up thru France stopping in hotels on way back up. He wants to do Stelvio Pass on the way to Italy if any of you have seen it on Top Gear then you will understand my terror but will do it! Then Dieppe to Newhaven and stay in Brighton a couple of nights, Alan Carr is on at Brighton Centre so going to see him.

Blimey talk about living life to the max but this bc does make you stop putting off till tomorrow what you can do today! And it will be 4 weeks after rads finishes so will be able to swim!

Hope all are ok

Love Sal xx

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Oh my goodness ladies so many posts to catch up with not sure chemo brain can remember everything!!!

Had my Taxol number 8 yesterday so another 4 to go. Steroids keeping me up today but tired. May try lay down soon and see what happens.

Donna glad you been able to get out. Hope you last chemo went ok and SEs are staying away from you.

Helen - good to hear you have also finished. Do you not just hate it when they try and leave the decision to us? Surely that is their job. Like everyone else I am just accepting everything to zap these blessed bu… Not pleasant but would rather have it than not even if only worth a very small percentage.

Lizzy - maybe we can meet up when you are back as I live on Beds/M Keynes borders. I am in touch with a couple of other ladies and it would be lovely to meet up. Feel like I know you already. Earls Barton only up the road.

Sal - so good to see you planning all your events after all the rubbish been through. So inspiring. Go for it girl I intend to do the same once I am able to.

Lisa - hope you last chemo on 14th is better than this last one you have had. Can’t believe you have been sleeping with a security tag! Sorry I had a laugh at your expense. Can’t believe how many people stare I think we should get our scars out one day and see what reaction we get. I think they would run a mile!!! And I would like to run after them and tell them what for:) Know what you mean about self confidence but at least Brad and Gucci love you.

Al - you have also finished so glad to hear but sorry it was rough. Lots of celebrations planned do enjoy. Please send me your race for life link. Got mine this Saturday SEs permitting.

Crazy Lesley - Your’e nearly there too. Good news

Isn’t if funny how we so look forward to our last one. It just seems bizzare.

Hope you all keep well and I am hoping that the Fatigue truck gets a puncture and needs a new engine too, which is beyond repair until end of July at least when we can almost all certainly guarantee to have finished being poisoned. With rads left which I hear can be very tiring but no where near as bad as being poisoned. Keeping my fingers crossed that is the case for all you ladies starting shortly. They did talk about giving me dates soon too so at least I can plan going away for a few days as I hate this limbo land bit.

Take care Adi

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Hi all. Feeling slightly more human today, even did some housework (steroid-induced probably). Still got very nasty taste in mouth, but I know it will go eventually, so i’ll just put up with everything (and nothing) tasting horrible.

Good luck with the tax truck puncture adi!

Sal your holiday/ road trip does indeed sound great. Good on you. I asked my BCN yesterday about the lack of scans and she left a message on my phone to say she has spoken to my onc and plastic surgeon and when I can get through to her (their number always just goes through to voicemail) I will find out what their opinion was. I think they will say that they only do scans if you have a lot of affected nodes (I had 3/16). But other people have said that if you have any positive nodes, you should be offered a scan (and that’s within the same PCT) so who knows. Might be worth asking yours if you’re concerned about it. We apparently get a group ‘end of treatment’ meeting with the BCNs after chemo and rads are finished, to discuss lymphodema, other lingering side effects and to give us a chance to ask questions, so that should be quite good I think.

Chemo 5 was bad for me too CrazyLesley/ Lisa. I’m hoping 6 wont be as bad, aside from the multicolour arm - i have varying shades of red brown and black bruising today! Long sleeves I think!

Its good that you’re first on your list for your mx Lisa. That was the bit I hated about my two ops - both times being last or second last on the list and having to suffer without food or drink all day. And too much time to think about what was going to happen…

Back to staring out of the window now - i have my washing out to dry but I don’t trust the black clouds in the sky so need to be ready to rush out and bring it in if the heavens open (again).

Al x

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Morning ladies, Ive given in this morning & phoned the doctor to get some help sleeping.Hope the last fec is better than this one. I am feeling a bit panicky about the last one, wont it over but dont wont to have it, Im sure you all feel the same. Fingers crossed we will all sail through it. Have a lovely weekend ladies xx

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Afternoon girlies,

Lisa, hope you are feeling a bit better today, try to rest those little blood cells so they can prep for next week. My onc told me that its different with fec, on fec you can walk etc to get the blood pumping, but with tax you need a little exercise but a lot more rest, the rest bit is more important! I haven’t taken my poor dogs for a walk for weeks, my daughter has to do all that at the mo.

Adi, would love to meet up when I get back, and hey, everything will be all over by then. Have you heard anything about the Northampton chemo ward? I don’t know if the MacMillan part does chemo or is that just rads?

Sal, I am very jealous of your bike trip, what a great thing to look forward to. Your OH sounds like a complete star (does he have a brother)!! lol, just kidding, mine is OK he just is so bloody far away!

CrazyLesley, hope you get some help with your sleeping. I have had a heck of time with it, but the last two nights I have slept through the telephone and the alarm!! I can’t even tell you why, I don’t think I have done anything different, maybe it’s just sheer exhaustion!

Al, glad you are getting on top of it. Sorry about your bad mouth, I think I have come to hate that part more than anything. At least you know it will pass.

Chocciemuffin, I love your everchanging avatar, mr. blobby! The 23rd will be here before you know it.

I was trying to remember my se’s from when I was on FEC, and to be honest I found it a struggle to remember them clearly. Maybe this is like childbirth, the pain is forgettable because the outcome is wonderful!! Hopefully, a cancer free zone!!

Did anyone else get tattoos when they went for their rad planning?

Off to get the kids again in a min, first got to change into something my factor 50 and sunhat… it’s a scorcher!!!

Love to all… sending bucketloads of neutrofil vibes to those that need them xxx

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Hello all.

Its not a scorcher here so no need for factor 50. But hey, at least its the weekend. Might even make it off the sofa tomorrow! Though my bad tasting mouth will sadly follow me wherever I go.

Got feedback from my BCN on scans/no scans - apparently you need 4 affected nodes to get a scan, and I only had 3. Though i can discuss it with my onc after rads. They haven’t said I definitely can’t have any scans, just that they don’t think I need them. I think I’ll still ask for whatever I can have just to have peace of mind, even if it is just for a snapshot in time.

Did you get tattoos Lizzy? Apparently up here you get about 7 dots around the boob. I think they’re quite little though, like freckles. So I should be getting mine on the 23rd. At least its not another needle in the arm! My arm is feeling very sorry for itself today, with new colours of bruising appearing as the day wears on.

Keep up the resting lizzy, especially if its good for those little cells. People can have some of my neutrophils now if they need them, since I have no more blood tests to pass!

Don’t panic about your last one crazylesley. It will be over before you know it. Hope you get something to help you sleep, i’m sure most of my grumpy moods are as a result of lack of sleep rather than chemo.

Good luck for your run/walk on Sunday adi. See if the tax truck can give you a lift part-way round!

Hope you all have lovely weekends

Al x

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Morning Ladies, just wishing you all a lovely day. Crazy Lesley good luck with your last chemo. Hope to join you all very soon!!!

Lizzy- I have only heard very good reports about Northampton so you should be ok. I think it is a very large/efficient cancer unit. Def catch up when you back - we could celebrate birthday and possibly getting over the finishing line together as I am August too!

Thanks for all the good wishes everyone. Love to you all. Adi x

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Congrats on your race adi. I thought it was Sunday, sorry! Hope you had a fab day and well done for raising lots of money (thanks for sponsoring me too, much appreciated). Hope your legs aren’t too achy today.

Al x

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Sal, I’m really envious of you and your road trip this year. We did 8 days down to the south of France a couple of years ago, myself on my little 535, OH on his 1100 fatboy, and his best mate also on a big Harley. I was leading (me, with MY sense of direction!) and it was a complete blast. Are you riding or going pillion? French roads are great on a bike. Nowhere near as many potholes as we have over here, and the corners are long and sweeping rather than stubby and blind. We’re going to do a couple of weeks in OH’s splittie next year, if I can work out what to do with my girlies for the time. I’m really looking forward to it! This year we’re limiting ourselves to a week in Devon with some of the kids and the dog, after chemo and before rads so I can get in the sea and swim (gawd bless whoever invented the portacath!)

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Hello lovely ladies,

Sal- Your holiday sounds fab. You are certainly living it up and France is just beautiful. I’m sure it’s going to be lovely to stay at different places as you travel up. I’m envious! I’ve never been to Italy but would love to. Can’t wait to hear all about it!

Lizzy- I rested loads last week, I was too exhausted to do much. I see a different Onc each time I go to for a clinic appointment. The last one said keep as active possible but I just couldn’t be that active during this cycle with no energy. I’ve been extra good this week with the food I eat. Lots of home made soup (beetroot is my favourite) and lots of berries. Time to start the kiwis too. My WBC and neutrophils were lowish for no.5 and I so want the final chemo to go ahead as planned. How are you coping with the hot weather? I usually love it but can’t bear the feel of it on my skin at the moment.

Al and Adi- Sorry for the dealy but have now been on your justgiving pages to sponsor you both. Well done for even considering this during chemo. I’d need dragging round at the moment!

Al- Hope your mouth is feeling better today. I’m so glad I’m first on the list for my op. I too was last for my surgery in Jan. I still had to get there for 7.30 and had my op at 2.3O ish. The waiting around was horrible and I was a nervous wreck. I didn’t get back on the ward until 8pm by which time all I could have was a sandwich.

CrazyLesley- Hope you’ve managed to get a good night’s sleep.

The fog has finaly lifted! I made myself get out of bed early on Friday and went for a walk. Not sure if that had anything to do it, but felt so much brighter and energised. Have really enjoyed the last few days, went to my best friends house on Friday and stayed there overnight to look after her little girl, who was an absolute delight, whilst she worked for a few hours yesterday. My best girlfriends came over to her house last night and we had a scream! A few days of normality before my last chemo on Tuesday (yippee, my last).

How’s everyone’s hair doing? I’ve got about 6/7 mm of hair. It’s fine but I can feel more coming through. I last shaved it the day of my last chemo and don’t think I will shave it again now unless it starts to fall out again. I picked up a tip from a thread on here and have been using a shampoo bar from Lush called ‘New’. Not sure if it’s helping but it’s nice to lather up the soap and put it on my head. Won’t it be nice to use shampoo and conditioner again?

Hope you all are having a good weekend,

Lisa xxxx

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Thanks for sponsoring Lisa much appreciated. Good luck on Tuesday will be thinking of you, so glad this bit is over for you.

Struggling big time today, but that is typical of a Sunday for me. Had a christening and barbecue today but just about managed the actual service and had to come to bed just as well it was only round the corner!!! Not sure how I actually managed to sit in Church.

All the best everyone, sorry brief but cannot concentrate. Take care all. Love Adi

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Hi all, had a day of gardening with my brother, in my bikini, factor 50 and sunhat. My girls were swimming in his pool but the water is still too cool for me! I hope I haven’t overdone it… my legs are a bit wobbly now so I am throwing vitamins, royal jelly, complan, spinach and god knows what down my neck!

Gawd bless the portacath indeed choccie, mine is an absolute godsend.

Lisa, beetroot soup indeed, have you a little russian in your blood? If so, maybe he can dance up some neutrofils for you!

Adi, thanks for the info on Northampton Hospital, definitely do some celebrating in August!!! When is this tax stuff over for you? whats next?

Al, I had three little dots tattooed, one in the center of my chest, and then one either side of my ribs. They are tiny and do just look like blue freckles!! I am waiting for the phone call for my start date, they can’t give it to me until my last Tax which is this Friday. As long as that goes to plan I should get the call. I have to take my 5 year old with me every day but the nurses are looking forward to watching her for me while I go in for the short time it takes. I do feel lucky. Hope your mouth is better now.

Good luck to all of you this week, another Monday coming up, another week closer back to normality (whatever that is)

Lizzy xxxxxxx

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Good Morning

CM Am going pillion this time whilst i would love to be on my own bike i will only be 5 weeks or so after rads and am not sure i will have the energy to do the miles we are doing, my OH has a triumph tiger 1050 and its really comfy for me so will just relax and take in all the scenery!

Lizzy, i do hope all this rain goes by the time you get back to blighty or it will be a shock to your and your girls system!! Good luck with your last Tax on Friday woohoo ! As for normality i think we just have to find a ‘new’ normal.

Adi, well done for your race for life you did good girl! Sorry your Sunday was not good, i guess the race took it out of you a bit too, hope you are feeling better soon.

Lisa, Have everything crossed that all goes well tomorrow…another Feb girl at the end of chemo, its so great! I too see a differnt onc at each clinic, the inconsistency does annoy me this has been the only critiscism of my otherwise amazing care. My hair, the little bit i lost at the back of my head is growing really fast have over an inch of soft brownish hair am delighted.

Al hope th bad mouth is now receding, that too has been the worst thing for me it feels disgusting, its not totally gone but is definitely getting better. I think i get 3 tattoos from what i have been reading but will know for sure on Weds as thats my day for planning.

Well have spent the whole of this miserable wet weekend planning our road trip, hotels all booked, one in black forest which looks like something out of a fairytale, cant wait. Thank goodness for hotels.com and trip advisor. Watched motogp on Sun, we kept saying wow cant believe we will be seeing this live in a few weeks, (sorry am crazy about bikes! ) then watched F1 and called them a load of wusses stopping the race after having seen the brave guys on 2 wheels still racing in the rain!

This week should be my chemo week still have a hospital appoint ment for rads but rather that than chemo, so will spend chemo day packing for Turkey!

Lots of love to you all after this week we only have poor Adi to drag over the finish line!

Salxx

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Hi all. Just wanted to say good luck to Lisa for today, or alternatively, I hope it went well if I’m too late and you have already been poisoned. Last one, wayhey! Hope your last one goes/went better than mine.

I’ve still barely been out of the house since last Wednesday. Have been really dizzy and have a dead arm which is really uncomfortable. Sore veins I can cope with but the dead arm bit is even worse. Not sure what that is. Mouth also bad, but at least it is the last time this should happen, that’s what is getting me through! Feeling quite fed up though.

I have some fuzzy fluffy hair too Lisa. It is coming out a bit after my last chemo but there’s still quite a lot of fluff to go around. I’m hoping it will become less fluffy and more hairy over time! And less white…

Thanks for the sponsorship ladies. I’m hoping that I’ll be more on form by Sunday. How are you after your race for life and busy weekend adi? Do you have another tax truck to hit you this week?

And its Lizzy’s last tax this week. That must be a relief for you! Hope you get your rads date soon. Its good that they’re looking after your daughter for you while you get zapped!

Good luck with the rads planning on Wednesday Sal. And with the packing! How exciting. We’re going away for the weekend next weekend I think, before rads, then will go for a proper week away after rads. Weekend thing will just be UK but hopefully we can get abroad for a week after rads. Somewhere warm and sunny with nice food…

The sun is out today so i’m determined to get outside, even if it is just to my garden. Best get dressed first though…

Hope you ladies are all doing ok.

Al x

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Morning everyone, off to Taxol number 9 shortly and when I get back I can hopefully say 3 more to go!!! This week has been so tiring but it is just building up. Al - I also feel a bit dizzy at the moment and really out of breath. Not sure if that is being so overweight now or the chemo. Will check later.

Lisa do hope you are ok after your last chemo. Hope the SE truck has still got his puncture!!! :slight_smile: Well done on crossing the finishing line with your chemo.

Crazy Lesley how are you doing?

Good luck for Sunday Al - you will do it! I am glad I did it but I think it has added to my fatigue unfortunately.

Sal - your holiday plans looks so exciting and am so pleased you are managing to get away. Life is for living girls!!!

Lizzy - hope you ok and stil enjoying sun. I really admire you going through this rubbish with young children. Somedays I can barely look after myself let alone look after a 5 year old. You are amazing.

Donna - hope you still out and about with hubby and little one.

If I have missed anyone - sorry but brain is useless at the moment. Take care everyone. Lots of love. Adi x

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CAN’T DO THIS CHEMO AND STEROIDS ANY LONGER!!!

Having the worst night ever. Tried going to bed bit later didnt work. Read for ages didnt work. Then the jumpy legs started oh what fun but when the jumpy body started that was scary. Thought my body was going to hit the ceiling. Was I hallucinating? Could feel the snow with my fingers at Mont Blanc and was too scared to go through the dark tunnell but could actually feel the mountain on top of me it was such a heavy weight. Never experienced anything quite like this. Then the bed became a slippery surface and was struggling to hold on. Wasn’t dreaming as was definitely awake as birds had started to sing already and not a minutes sleep. Then sobbing kicked in oh my goodness myabe I needed to let it all out. Had to control myself as was conscious of waking daughter and she needs to get up early for a long shift. Shes very brave and works in mental health and for a moment I thought I needed to be one of her patients!

Was all this because it was exactly six months yesterday since the hell started? And yes I have been brave and positive (almost starting to dislike the sound of those words) and did it all become too much? Have I been in denial. Where’s that crystal ball - can’t find it maybe I threw it out during my mad decluttering days:)
Was it because Onc Nurse confirmed I had put on two stone and needed to do more exercise and eat less! Did 5km on Saturday and still put on 2.5 lbs. Steroids make you hungry and chemo make you tired so exercise goes out of the window.

Used to be a confident career girl but confidence is slowly disappearing. I want to be ME. Top bosses have invited me to Ascot on Friday but have had to decline as can’t see how I would cope at such an eventful day. Really gutted but too far from home and I think would be silly to attempt it. Also got my nieces Hen Party - Afternoon Tea with Champagne on Saturday afternoon and 60th Birthday Lunch on Sunday - have I put myself under too much pressure to get sleep so that I can manage these as weekends are my worst days? Oh the questions no wonder can’t sleep!

Even managed to upset my partner yesterday. He is such a caring and attentive man and I am Mrs Independent and it was too suffocating yesterday. Just as well he loves me to bits as a lot of men would have walked away. Bless him.

Oh my goodness I already feel better for ranting and putting it down. Sorry BC friends but thanks for listening. Going to finish my Manuka Honey and try that bed again. Love to you all. Adi x

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Hi Adi,

sorry that you are having such a rough time at the moment, totally unfair considering everything else that is going on.

On the steroid front i would contact the Chemo unit or your BCN as it may well be that they can reduce dose as i know they have done this for others that have experienced similar Se’s as yourself so no you are not going mad.

I finished my chemo 3 weeks ago & am just about getting back to normal energy levels, i too put on 2 stone during treatment & was told by my Onc not to worry about it till treatment was over, he advised me to deal & get through the tough treatment 1st as would then have the rest of my life to shift the weight, i think the nurse that spoke to you was a touch insensitive.

I hope you enjoy your weekend of planned celebrations & get the steroids sorted before next lot.

Take care

Sarah.xxx

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Good morning,

Oh Adi i do feel for you it sounds terrible, i hope you get to speak to someone today and get it sorted, you should not have to be suffering like this.

Went for rads planning yesterday only in 45 minutes have now got my 3 tattoos. One of the radiologists said as she was looking at scar under my arm 'did your surgeon just go thru that incision to get into the breast? no i said he went in just around the nipple and she was amazed by my lack of scar said it was the neatest she had seen in 10 years i felt very proud of my surgeon!
Anyways got my do’s and don’ts just really no perfume or deodorant might feel a bit tired might be sore skin but they would see it every day so they can keep an eye out.
Got my appt times for first 5 days blinkin 8.24am, thats going to be a laugh getting into Leeds at that time of the morning, its a 25 min drive as it is never mind rush hour!!

Off to do some last minute shopping for hols,

Hope all are ok , lots of love

Salxx

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Oh Adi my darling, I’m so sorry to hear that you’re having a rotten time right now. You really need to give yourself a break girl, you have done so fantastically well so far!! You are on a really tough regime and I don’t know how you manged to do the race for life at the weekend, you are my superwoman! I hope you managed to get some sleep and are sleeping now as I type this. Don’t worry too much about the weight gain. You have steroids every week so I’m not suprised. I want to slap your nurse! I’ll diet with you when our chemo is over and we are stronger! Your partner sounds fab, bless him. My partner was rubbish and is no longer my partner. I think he’s in Las Vegas having a wonderful time at the mo! (not that I’m bitter!) I have snapped at my nearest and dearest but they have been incerdibly patient with me. Don’t put yourself under too much pressure for the weekend. If you feel up to the celebrations, go but if you don’t, stay at home and rest. I’m sure everyone will understand. As far Ascot, it’s a shame you don’t feel up to it but if it’s any consolation, it’s going to rain until Friday (and cagool just isn’t a good look for racing, is it?). Take care of yourself, it’s so bloody hard to accept that we can’t do everything we did before, isn’t it chick? But things WILL get better and you’re nearly there to the chemo finishing line, you CAN do this! Lots of love to you my darling xxxxx

Al- I hope you’re feeling better and have managed to get out a bit more. How’s your mouth feeling? Any improvement on the arm? Is it this weekend that you’re doing your race for life? You’re my Superwoman too! I don’tknow how you girls mange it. I can’t walk far at all now without my thighs going wobbly.

Lizzy-Good luck for tomorrow’s last taxing. I will be thinking of you. I made extra efforts to eat well and the bettroot soup, berries, kiwis etc seemed to have helped. My neutrophils were 4.7. Are you hogging the good weather over there? It’s raining here this morning and likely to rain on and off for the rest of the week. Booo!

Sal- I watched the F1 too, disappointing wsn’t it? I couldn’t believe they gave Lewis Hamilton such a hard time saying he was driving dangerously! You’re holiday just sounds better and better. You go girl! I’m trully grateful for the treatment I’m getting and feel lucky to be treated at The Marsden. The docs and nurses are fab but seeing a dfferent doc each time, I get given different advice. How did your rads planning go yesterday?

Well, I had my last tax on Tuesday. It is great to know that I have had the final poisoning but there is still the next few weeks to get through. I’m a bit dissapointed as I saw my consultant who had advise me not to go abroad on holiday. he said it’s such a short window between getting over last chemo and having surgery and I need to be fit for the op. He said it’s not worth risking picking something up just before my op. I might still have a few days away in the UK with my mum and delay an overseas holiday until later in the year. Part of a tooth feel out yesterday and I was only eating soup! Th tax truck, it seems is punctured and has not reached me yet, yippee!

Lots of love to all you lovely ladies,

Lisa xxxxxxxxxx

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I posted, lost it, rewrote and then it posts twice!