June 2017 starters

[Ilovemarsbars]

Just found the eBay ones thanks. Pretty designs to and I don't mind a fiver.

Felt ok this morning but dizzy this afternoon. Tired but I can't sleep which is weird x

[Wandestrong]

Ilovemarsbars, I agree a lot of the picc covers are pricey, the one the nurse mentioned to me previously 'care+wear' are £30! But I'm going to order a £5 on eBay, I don't mind the dressing cover but it's my cousins wedding in a few weeks so hoping I can get a nice dress to cover the site too.

[Wandestrong]

All the best for today Skells! Im on day 3 of second FEC and feeling OK. My sister is round my house to take care of my baby for a few hours while I have a rest. My 4 year old is out to a birthday party with my husband, so I'm taking advantage of the Me time! Im taking all my meds prior to side effects kicking in this time, I was reluctant to take anything after the first cycle. Apart from the initial hang over- like daze and fatigue, I think I'm coping well. I'm praying I'm back to 'normal' in a couple of days! All the best to everyone x

[Skells]

* hope this helps *

[Skells]

Hi ilovemarsbars. I love the name btw!

I had a reaction to the picc plasters so they switched to clear ones. These are much better on my skin and I haven't reacted to them. I got a lovely picc cover for £5 on ebay. I just ordered another one but they ran out of medium size so I ordered small. They come up a bit big so hopefully the small will be ok. I searched for picc cover in ebay to find them. I now this helps.

Xxx

[Ilovemarsbars]

Morning everyone. I'm now day 9 after fist FEC and I'm feeling ok. My scalp is very tender though.
The tiredness is so weird. Is anyone else having trouble getting proper sleep. I just feel like I'm not having any. That feeling when you haven't had a solid few hours. ? It's strange.

Had to go yesterday and get my PIcc dressing sorted because it was peeling off and also I seem to be having allergic reactions to the plasters they are using. Is anyone else having issues?
I wanted a nice cover for it but can't believe how expensive they are it's wrong they can cash in on something that is almost needed. I just hate walking round with the bandage look.

Any nice plans for today? My 12 year old doesn't want to come out with us today he made plans with his friends. Guess I should be grateful. Think we will go for a walk along the seafront and then to sprinkles for waffles and ice cream while my mouth feels ok and I can taste things. X

[Skells]

Oh no. Sorry to hear about the fainting. Can I ask what day off the cycle you're on? I had near fainting on days 6 and 7. I mentioned it to the consultant yesterday who said it's normal as you've just come off the steroids.

I'm taking my girl to rugby tots this morning then off for cycle 2 at 12. Queue another week of feeling sick. 🙁

Hugs to all. Xxx

[Abulafia]

All best wishes for today AliOG. Hope it went well.

Today I made the mistake of attending my picc line cleaning ceremony sans any drug assistance... Big mistake...I fainted.

Lesson learned ......take some sort of relaxant before going...

Feeling muscles are weak but trying to walk and eat cake and enjoy life.

All best to everyone for a relaxing weekend. x

[AliOG]

Morning everyone,

Hope you're all doing OK today. I found that blog by the breast surgeon very useful too. She goes through embracing the bald look which is what I think I'm going to do. The letter for a wig referral dropped through the door yesterday which gave me a little wobble and made it all feel very real but I just can't see me in a wig so think I'm not going to bother. 

Abulafia, I'm sorry to hear about your recent diagnosis too. Sounds like you're being as positive as you can be though so well done for that. It's not always easy putting a brave face on things for others. I find it exhausting at times.

Had a friend come and visit me yesterday. At one point we laughed so hard I had tears running down my face. A few weeks ago I thought I'd probably never laugh again so it felt like a real milestone. 

Off to to hospital for pre assessment this morning. Wish me luck!

[Skells]

* breast surgeon who went on to develop breast cancer *

[Skells]

Well done wandestrong. I hope the side effects are OK. I'm hoping second cycle is a bit easier now we know what to expect.

I'm at the hospital tomorrow for the consultant then second cycle on Saturday.

I've joined the local shine cancer support group. It's a nationwide set of support groups for people with cancer in their 20s - 40s. I think there's lots of local groups so might be worth looking into.

The first meet up is in a few weeks. I'm hoping it will help to talk to people who have been through chemo and come out the other side.

Thank you to whoever shared the link to the blog posts from the best surgeon who then evermore beat cancer. I found it really interesting to read. I also got a few hints about how to survive with no hair. She got some temporary tattoos to put on her head. I've done the same. They arrived today and once my hair has totally gone I'll give them a try.

Hugs to all.
Xxx

[Wandestrong]

Second FEC done and dusted... PICC line made the administration easy and no injections! Only downside is that I have to attend the hospital weekly to have dressing changed and saline flushed as a district nurse doesn't do home visits for this. Feeling quite 'drunk-like' but I think it's the steroids, apart from that just trying to get plenty of rest..hoping the side effects aren't any worse than the first cycle... Good luck to you all on forthcoming cycles x

[Jintz]

Sorry s/b boob! !

[Jintz]

Hi Abulafia,

I love your posts. Although I know it's serious , your sense of humour makes me chuckle ! I think you should write a book.
So sorry to hear the diagnosis of the other boon too.
Best of luck and please keep posting !

[AliOG]

Morning all,

Trip to the hairdressers went well. I didn't cry! Yay - go me!! I've known my hairdresser for years and I'd already told her on Facebook what was going on so she knew the score. I already have pretty short hair but I have now lost floppy fringe bit and gone for a crew cut type thing. I also had it dyed its usual bright red so I'm verging on an Annie Lennox circa 1982. I can live with that until it all falls out. I also had delivered a really nice hat from Suburban Turban yesterday - also red to replicate my hair! Not cheap but totally worth it. 

Antibiotics seem to to be kicking in so I'm hopeful things will go ahead on Monday. I have pre assessment tomorrow so will find out more then.

Hope you're all doing ok today. It's a lot cooler today so hopefully a restful night for all. 

Abulafia, I love that you punched the air for me! The buzz of the gig has kept me going all week! X

[Abulafia]

Oh...one more thing I did was buy a tubigrip for my picc line.  Because of some weight loss the other wasn't providing the support.  Best thing I have done...very, very gentle compression on arm.

Hope helps anyone else who has picc line.   Happy with it now.

[Abulafia]

Morning everyone.

AliOG, I cheered and thumped the air.  So glad you went.  

I went to see the oncologist the other day and the biopsy on my other breast came back and revealed DCIS, so my boobs are truly f $##ed. Have to laugh.  After all the trauma of diagnosis, they are now talking about the importance of reconstruction in some form...I just think...I am 56, I don't care, I just want to give myself the best chance of cure ifmat all possible.

Chemo sent up another nice little side effect.  I thinkmI brought it on myself by eating spicy food.  Diarrhoea.   Took immodium and seems to have worked.  Lesson learned....oops.

Off to the hairdresser today to get my wig cut.  Day 13 and no sign of hair loss as yet.  Dreading it, if truth be known...

All best for a good day to all you ladies. Xxxx

[Daffodil54]

Morning all. AliOG, hope your new hair cut is great. Had very restless night last night. Not sure whether to blame heat or treatment. Eczema suddenly rearing its ugly head to add to everything else.

Hope you all have good, cooler day.

Hugs.

[Nixons3]

Thanks Jintz...I need to get a grip on my munching I think, lol to some of the predictive text I get too!

[Jintz]

BTW Fantasting must be my phones new word. Cross between fantastic and fascinating ! 😂

[Jintz]

I am a bit emotional too but not over hungry ! I can do without putting on more weight anyway ! I believe it's the steroids so just go with the flow hun. Big hugs

[Nixons3]

Thanks Jintz.

I hope you're all keeping cool. My emotional moods are all over the place! I teared up at my sons' schools Ofstead report earlier! Plus v.hungry! 

[AliOG]

Thanks, Jintz. I will! 

Hope you have a good day today. Looks like it's going to be another hot one! X

[Jintz]

AliOG,
Sounds fantasting. Probably did u the world of good. Keep that positive attitude and when u are low, chat to us and you'll get through it !
Take care x

[AliOG]

Hello ladies,

Well, I'm happy to report that I went to the gig after all and it was the best decision I made. It was at an arena so the place was buzzing (and a little tense with armed police on the streets). My throat felt like it had a golf ball stuck in it but that didn't stop me singing every word to every song and waving my arms in the air like an idiot all night. I danced till my feet hurt and came home at 11 pm, exhausted but happy. 

Funnily enough I went to another big gig when I'd just been diagnosed and was as miserable as sin all the way through even though I loved the music. I think the difference this time is that I've had a bit of a shift of gear. Going through treatment means the cancer is being dealt with - I'm dealing with it - and that's a positive. I know it's probably going to make me feel rubbish at times but it has a purpose and that purpose is so that I can go on singing and dancing and being daft with mates when I want to. 

I hope I can keep this frame of mind going when I'm feeling low. Big hugs to you all today and here's hoping you're all doing ok. I'm off for my pre chemo haircut this morning. I will report back! Xx

[Jintz]

Sound like u doing great Daffodil54. Baby steps hey !

[Jintz]

Hope you feel better soon Nixons3.

[Daffodil54]

Hello everyone. Good to see most feeling positive even in the heat! 

Day 8 and feeling pretty good. A wig I ordered arrived but not sure I will want to wear it. Looks fake. Maybe with a scarf.... Only 2 more injections to administer this cycle. 

Keep positive and sleep well.

[Nixons3]

Good for you Velvet.

I'm feeling very low tonight. Think the chemo blues have kicked in. Hope they don't last too long. Feel an awful detachment I can't explain, 

hope you all stay cool and get some sleep xx

[Velvet]

Hi AliOG

Sorry you're feeling poorly with tonsilitis, I hope it clears up in time for you to start on Monday.

I know exactly what you mean about becoming a bit of a recluse since being diagnosed because I've been very much the same. I've just been through 2 operations and will be starting chemo (6 cycles of FEC-T) a week today,  I just wanted to hide away. 

However, at the weekend, I looked at the link Jo_Carter posted further down on this thread regarding Liz O'Riordan and it changed the way I felt (particularly her TEDx talk).  Today I've been out to buy some necessities ready to start chemo next week, and while I was out I also bought a bright red lipstick to help me face the world (I never wear red)  because I've decided I don't want to hide away any more.

If you haven't looked at this link yet do see what she has to say.

I'm sure that once you get to the gig you'll have a great time and you'll be glad that you went.  

Hope you have an amazing evening

Velvet x

[Abulafia]

Ali, tonsilitis.. bleurgh...but doable! xx

I am changing through this process. Always...oh I dunno..just learning to love each day and not worry too much about tomorrow. Just take each day..and live in it as best I can... Don't know if that makes sense, and it's taken me a while to make peace with it all.

I hope you go, but you know what's best for you. xxx

[AliOG]

Hi Abulafia,

I'm sorry to hear you got it too and on top of going through treatment! I'm hoping I'm going to feel better by the weekend now that I'm getting pumped full of antibiotics but I'll have to wait and see what they say on Friday. The waiting is seriously getting me down now. We're meant to be going to a gig tonight. The tickets were bought back in December but the thought of standing in a massive crowd of people isn't really appealing. I know my husband will be really disappointed if I don't go so I'm going to have to pull myself together, stick some make up on and get on with it. I'm sure I"ll enjoy it when I get there. I've become a bit of a recluse since being diagnosed....

Anyway, hope the tonsils aren't giving you too much pain. It's yoghurt for breakfast for me! 

x

[Abulafia]

Snap on the tonsilitis. Mine kicked in about day 7. With antibiotics and nistatyn I am coping pretty well. Hope it doesn't delay chemo too much. xxxx.

[AliOG]

Thanks, all. I spoke to the BCN and she wants me to keep the pre assessment appointment on Friday and said chemo might go ahead anyway, depending on how I am. The GP has given me 8 antibiotics a day for 10 days which is a bit OTT if you ask me but I'm going with it for now. I just want to get treatment started now...

Looks like it's going to be another hot night. Good luck, everyone! 

X

[Jintz]

I love your sense of humour ! I am sure that will get you through. So horrible that you have tonsillitis and are on a antibiotics. Hope you recover soon and then you can start treatment.
Good luck

[Tripletmum]

AliOG take care of yourself first. Hopefully your antibiotics will clear up the infection quickly and you can be back on track. Much love xxx

[Nixons3]

Get well soon Ali. How frustrating for you. 

This heat is awful for everyone I think...chemo or not! 

Hooe you can get on asap x

[AliOG]

Morning ladies,

Quick update from me: I've been diagnosed with tonsilitis and given antibiotics. This means that treatment is probably going to be delayed. I'm just about to pluck up courage to speak to the nurses about it. I feel like I've waited so long already and can't bear the thought of more waiting. I think I might literally go round the bend. I had geared myself up to start a week today but I'm teetering on the edge of bottling out completely. Feel so frustrated!!!

And breathe.....

I hope you are all coping with the hot weather and that side effects are not spoiling these lovely summery days too much. 

We had a street party on Saturday so I can sympthaise with feeling hung over and being a bit spaced out. I like to call it training for chemo!

Anyway, happy Monday to you all. 

x

[Nixons3]

Hi Tripletmum I'm say as you I think- last of my steroids today so expecting dip tomorrow. Take all the help you can get. It's not forever. Good luck! I feel slightly hungover and not quite with it! Not very ill so far though x

[Jintz]

Hi Triplemum,
Well done so far ! I agree you should get your folks to come and help if they can. Im on day 5 and past 2 days have had very painful legs and felt weak. I have had both my daughters come out to help me so definitely think you could do with it.
Take care and keep posting !

[Tripletmum]

Thought I would check in on day 3 post chemotherapy no. 1. For day 1 I felt just spaced out but yesterday I was totally exhausted with any small effort just wiping me out. With 3 small children in our house I think I will need my parents to come and help my husband for the remaining 3 cycles. Apart from being tired I have a 'fuzzy' mouth and zero appetite but nothing else to report!

Hope everyone else is doing ok and good luck to anyone starting this week xxx

[Abulafia]

one, not on!

[Abulafia]

skells. x

fwiw, my friend went through a brutal chemo 30 years ago, and has since had two wonderful kids. On just got her PhD in mathematics and now teaches at uni, and the other is a master's in town planning.

[Daffodil54]

Thank you for the link. Very helpful.

[Nixons3]

Oh Skells what a time you've had. Wishing you the smoothest of journeys x

[Skells]

Got my hat and it was reduced so I'm happy.

My hair started coming out on day 15. It felt like loads was coming out but I looked before I cut it and I couldn't really tell. It's only clipped at the moment. I think it's a number 2 or something similar. I was planning on shaving it too but my mum was getting a bit upset.

I've got my next chemo on Saturday and I'm starting to worry about going through it all again.

I'm meeting the oncologist on Friday. I might ask about skipping fec-t to save my fertility. I'm not sure if she'll agree because I don't have a plan for having another baby. My husband died when I was pregnant and I haven't met anyone else. I always thought I would have another baby but can't see how it's going to happen.

[Daffodil54]

Day 6 still got sore throat and some back muscle pain. Also more tired. But doable. Thanks everyone for encouragement and feedback. No hair loss yet.

[Abulafia]

Hugs also to you skells. I had 8 lots of injections after fec. Bone pain started, but ibuprofen amazing.

Throat pain finally easing and a mosquito bit me! (not so toxic lol)!!

Baby shampoo fantastic for hair. Getting wig cut by a trained hairdresser this week. Wig doesn't have fringe and I do.

Feel all this is exhausting (day 9), but again... do able... Starting to feel normal again. xxx

[Jo_Carter]

I'm starting the same treatment on Friday 23 June. I found this really useful http://liz.oriordan.co.uk/index.html to get a few things in before it all starts.

[Nixons3]

Well done Skells. How long did that take roughly? Hope you find a nice hat x