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December 2016 Starters

Agarside
Member

Re: December 2016 Starters

Jacquie and Snail, can I ask about the add aspirin tria? Or have I missed the post! I was taking 75mgs aspirin daily from about age 42 as grandgrands died in early 70's from MI's and mother has high bp now also... is it to do with cancer treatment?
A
X
Jacquie48
Member

Re: December 2016 Starters

Glad you're sorted Snail. Your surgery has a pharmacy? Yes fingers crossed it won't get worse. I'm on the train to my last one! I've read about the aspirin trial. I'm thinking of taking an aspirin every day anyway, going to ask oncologist what she thinks! If it can do no harm and potentially some good, it's an easy thing to do.

Hope Cookiepuss, Evie and Fiddlercrab are all doing ok.

J xx
Snail888
Member

Re: December 2016 Starters

The dressing I have is polymem it is foam with special.properties so the leaflet says. I decided to call surgery pharmacy told her what I wanted and she said ok no problem! She alsonsais the dressing are about 3 pound each which I suppose is a lot for the nhs. No hydrogel or sprays or anything else given to me. The dressing is very comfy though and hopefully only 2 more doses won't make the sore bits any worse. I dont see anyone now until end of August unless I go onto the add aspirin trial which is very scary but also hopefully liberating 🙂 x
Jacquie48
Member

Re: December 2016 Starters

Ps Snail I assumed you had hydrogel I don't know why but if it's Mepiflex the foam one I've got loads from the hospital and will send you some if you like x
Jacquie48
Member

Re: December 2016 Starters

Ooh Snail that doesn't sound nice. I currently have one area of slightly broken skin under my breast which has a foam dressing on. I think it outrageous that they expect you to get more dressings from your GP. First you have to get an appt and second they are treating you not your GP. I haven't needed hydrogel yet but am going to ask tomorrow for a couple to take home in case. If they give them to me I'll post you one!!! It's a weird feeling to know that tomorrow is the end of constant appointments. I see the oncologist on 23 May then that's it!

Fiddlercrab can you take Oramorph? That's what I had when I was in with colitis. I squirted it into my mouth so no tablet or vein required. Ask if they have it. I can't take codeine and this was the alternative and it was good. Glad you're done and hope the pain isn't too bad in any case.

J xxx
fiddlercrab
Member

Re: December 2016 Starters

All done. Sore, bruised and can't stay awake! And once again needing extra antisickness drugs. Cannula went in on first try and was good while it lasted, then it stopped working and the doc couldn't find another vein, which was a concern because it means I have to have oral meds... with a chance that I throw them back up again, at which point I am without pain relief. Fingers crossed.
Snail888
Member

Re: December 2016 Starters

I'm not too bad thanks Jacquie. Skin has rubbed /split under arm pit like I said it would because it was rubbing. So now it is split I get a dressing but only 1. If I want another I have to get gp.to prescribe them. Tried to get another one out of radiology but they said no! Nausea all gone now I'm on boosters. Just red and hot. Piriton seems to help of all things. How is everyone else going. I have 2 more doses and finish Friday:)
Jacquie48
Member

Re: December 2016 Starters

Hope all has gone well Fiddlercrab. Cookie and Evie, hope you're recovering well. Sorry the drains were a nightmare Evie.

Sara, I've now done 19 of my 20 and finish tomorrow. I've been working through and am shattered. I'm sure the fatigue is why my mood has been low. I've taken a week off to rest after tomorrow. Hope you're feeling a bit brighter.

Snail how are you? Whilst I'm working I don't have to face a class of children. You're incredible. Hope the nausea has stopped?

Hi Christina welcome. Are you still having chemo?

Love Jacquie x
WMJ
Member

Re: December 2016 Starters

Pleased to hear your ops are done Evie & Cookie. Sorry to hear about the drain issue Evie, hope you are feeling better today. Cookie well done taking a peak and I hope you are well enough to go home today. Yes the sunshine certainly helps with everything. Take care and take it easy both of you. Sending you both virtual hugs XX
WMJ
Member

Best of luck for today Fiddlercrab. Take care X

Best of luck for today Fiddlercrab. Take care X

Cookiepuss
Member

Re: December 2016 Starters

Hi Christina - welcome! What a shame you didn't find us earlier as we all started chemo in December. Most of us have finished the chemo but a few still have a cycle to go so am sticking around to provide support. Others are moving onto surgery and rads now so still providing support.

Have you finished the t cycles now?
Cookiepuss
Member

Re: December 2016 Starters

Morning everyone - very pleased to be awake on this lovely sunny morning albeit a bit groggy still.

Op went well and have even braved a look at wound which looks very neat. I thought I would be quite distraught at lack of breast but feeling ok at moment although guess it will hit me eventually.

They anticipate me going home today depending on vital signs etc. I did manage a sandwich last night but had to have injection for nausea which bloody well hurt. Drain a bit uncomfortable.

Evie how are you today? Are you going home?

Christina SL
Member

Re: December 2016 Starters

I just found you all! I had no idea there was a forum for women who started treatment when I did. I too am frustrated with loss of nails, no hair and mucus!!! From taxol.
Evie-S
Community Champion

Re: December 2016 Starters

Sara I'm so sorry. I mentioned you in my post but forgot to send my best wishes to get you through your rads. Sending you every strength. Moan away when you neee to. You have helped us. We can try to help you. Evie xxx
Evie-S
Community Champion

Re: December 2016 Starters

Both drains thankfully now gone. Spaced out again from drugs! Hopefully home in the morning.

Cookie not sure when you will see this but thinking of you and hope all has gone to plan. Wonder how long you will be in for?

Fiddlercrab thinking of you and sending best wishes for tomorrow. How long are you due to stay in?

Snail I'm hoping you are getting close to the end of rads. You are amazing to be teaching through it. Remember SALowerys words that we all have super powers.

Amanda hope the hand and feet swelling has gone down?

Memory useless and I can't check back so apologies if I have missed anyone which I'm sure I have. Hugs to you all. Evie xxx
Snail888
Member

Re: December 2016 Starters

Agarside I have found rads quite tricky. Partly this random nausea but also the expectation that I can carry on now it's not chemo. I am also unable to wear a bra even a soft stretchy one as i get too got then the skin stings. This makes teaching almost impossible unless I wear a thick cardy which then makes me hot and sets the skin off. It's all very frustrating. I think we need to remember we are having treatment and take care of ourseleves.good luck with next chemo x
Snail888
Member

Re: December 2016 Starters

Good luck cookie puss x
Cookiepuss
Member

Re: December 2016 Starters

Morning everyone

 

Evie - sorry to hear of the drain removal problems and hope you get that sorted quickly.

 

Fiddlercrab - good luck for Wednesday; presumably you are having your surgery?  Sorry if you have already said, my head is all over the place at the moment.

 

Had blood test yesterday - my neutrophils are a bit lower than they would like but are going up (slowly) and WBC is good so all going ahead today.

 

Instructed not to eat anything after 6am so had some cereal at 5.30am and now my stomach is grumbling away like a volcano about to erupt.  Given that I am not due to be admitted until 12 noon and then it will probably be a couple of hours before I get taken for the op I think I will be flaking out from lack of food.

 

Just want to get today over and done with.  Will let you know how things are as soon as I can.

 

 

 

 

fiddlercrab
Member

Re: December 2016 Starters

Oh Evie, that's not good. Fingers crossed it all goes smoothly for you with the removal. My surgeon said the drains would be in for two weeks. I'm not very keen on that idea if they can come out sooner!

Evie-S
Community Champion

Re: December 2016 Starters

Huge pain when they tried to remove the drain and it then snapped so another GA in morning to remove it!! Ahhh!! Back on some sort of morphine so won't make much sense this eve. So upset as I felt I was making such good progress. But for those about to have this op I am assured that this is really really unusual and I was just unlucky.

I agree with Amanda this forum is great for moans, sharing experiences and good news. Hugs to you all. Will hopefully be back on here sometime tomorrow. Evie xxxxx
Jacquie48
Member

Re: December 2016 Starters

Good luck tomorrow Cookiepuss hope bloods ok. And Fiddlercrab for Wednesday. Nice to hear from you Evie. I only had one drain (though was only lumpectomy) and it didn't hurt a bit coming out. Hope same for you. Xxx
Agarside
Member

Re: December 2016 Starters

It is so ok to come here an moan!  I do it and sometimes just writing it down is acknowleges it.  Rads are supposed to be the "easy" part of this treatment??  But with everything our bodies have gown through, it is a marathon that just never seems to end.  I have found the more subtle the SE's the far harder to deal with.

 

I am back to see my (new) Cons tomorrow to see what he has planned for the next and LAST cycle next week.  Then Rads for me...

 

Good luck to all!!

A

x

 

SALowery
Member

Re: December 2016 Starters

Hi

Great to hear your doing ok Evie... try not to think too much about having the drains out like swampy said deep breath in and it will be out....

Cookiepuss & Fiddler good luck to you both and please let us know how your doing...

I'm a bit of an emotional wreck and don't really know why!!!! I have 8 more radios to do and this gets harder each day as I am feeling so tired... I know I shouldn't be moaning about this as you are all going through much worse.... just a bad day for me

Thinking if you all

Sara xxx
swampy1901
Member

Re: December 2016 Starters

Hi Evie-S

From what I remember of having the drains removed I was told to breathe in deeply and when I breathed out the drain was removed - barely felt a thing! Hopefully it will just as easy for you too!!

 

Swampy

Evie-S
Community Champion

Re: December 2016 Starters

Fiddlercrab, I am just waiting to see surgeon about the drains but most likely I will be out tomorrow. Fingers crossed. I have been told it hurts a bit when drains come out so have just asked for an anaesthetic! Apparently that isn't necessary. Hmmm.......I am sending you and Cookie every strength. Just focus on the fact that the cancer will be gone. Someone said that to me and that helped me a lot. Evie xxx
fiddlercrab
Member

Re: December 2016 Starters

Fingers crossed for your bloods, Cookie.

 

Evie - good to hear that you're recovering well and have mastered the wifi! Any idea how long you'll be in for?

 

Just had a call asking me to go in tomorrow for the radioactive dye injection thing, so they can 'do' me early on this list on Weds. Suddenly seems very real.

Evie-S
Community Champion

Re: December 2016 Starters

Ps Cookie, fingers crossed your bloods are ok for tomorrow I meant to say. Can't work out how to look back at messages on my phone! So apologies for missing things. Xxxx
Evie-S
Community Champion

Re: December 2016 Starters

Hi Everyone
First miracle is that I have mastered the wifi I think!
Thank you all for your kind wishes. Docs seem happy with everything. I'm being kept in til Tuesday because of the drains.
My very best wishes to Cookie and Fiddlerctab and to reassure you that you will be fine. I am not brave but already I'm walking around ok. Just have to make sure I don't lift with my right arm or stretch it which I keep forgetting. Please ask if you have any questions I can help with. I'll be thinking of you both.
Amanda I think you said you aren't too bad, I can't look back at posts on my phone and my memory is even worse. I hope that's right.
WMJ hope you are enjoying your week. Again happy to answer any questions regarding the clearance.
Hugs to all of you and thank you for supporting me through the op. You are an amazing group of ladies.
Evie xxx
Cookiepuss
Member

Re: December 2016 Starters

Thanks everyone - getting very nervous now. I'm hoping it goes ahead as the hospital want me in for repeat blood tests this afternoon as my pre-op ones last week showed that my WBC was lower than the minimum that they like before surgery. Everything crossed that they are ok today as I've psyched myself up for tomorrow.

Hope Evie is ok and will be posting an update once she gets wifi
WMJ
Member

Re: December 2016 Starters

Best of luck tomorrow cookie, we're all rooting for you. X

Hoping you are doing well Evie, thinking about you. X

Agarside
Member

Re: December 2016 Starters

I guess we all have a lot on our minds at the moment as we have been a bit quiet lately.

I hope all went well Evie and thoughts are with you for tomorrow Cookie.

Here SE have calmed, now coping with water retention in hands and feet.

Wishing everyone a good week.

Amanda

x

fiddlercrab
Member

Re: December 2016 Starters

Hope everything went well Evie, and all the best for tomorrow, Cookie.

 

Bag o'nerves here!

Evie-S
Community Champion

Re: December 2016 Starters

Thank you to all those who posted after mine yesterday for your lovely messages and kind wishes. You are all such amazing ladies. As Sara said, we must remember we have "super powers" now. I am going to take that with me all day!

 

Just in case I can't work out the wifi then I'm going to wish Cookiepuss alll the very best for Tuesday and Fiddlercrab all the best for Wednesday. Cookie - good idea not to think about it and enjoy the weekend. 

 

WMJ - I know yours is the 18th, I really hope to be back online by then! Enjoy your appointment free time.

 

Right - I know OH will drag me off and tell me to get ready any minute so I had better go.

 

My love to you all, hope to be back on here very soon.

Evie xxx

WMJ
Member

Re: December 2016 Starters

Thank you Aine for your kind words and reassurance. I am pleased to hear you are doing well 3 months post treatment. I wish you continued strength and good health. 🤗
WMJ
Member

Re: December 2016 Starters

Good idea Cookiepuss, hope you have a lovely weekend planned. Enjoy. X

Aine
Member

Re: December 2016 Starters

Hi all you warriors!  Im from the Sept/Oct thread.

Your are all battling fantastically against the overwhelming SEs and problems that go with chemo and rads.

It is going through hell and there is no other way to describe it.

Please be comforted by the fact that it will be over soon and you really will get to the stage where it will be over and you will all start to feel better.

 

I found it extremely difficult.  Every moment of every day was bad and I had terrible nausea which I could not get under control.

But it is now 3 months behind me and I am feeling much better even though I thought I would feel sick for the rest of my life.

 

I am writing this because I did not have anyone clearly reminding me when I was feeling so sick that it was normal to feel sooo bad and that it would definitely be over soon.  That I was going to be better.  That I was going to get over it.

 

LennyGK - you are in NI.  If you are within distance the MacMillan Centre at the BCH is fantastic.  I go to yoga and pilates there and did a couple of their courses.  The support is great and I have met a lot of great ladies.  It has been a godsend for me and the crack is mighty!!!

 

Ladies - take care of yourselves and keep telling yourselves it will be over very soon!  Big hugs

Aine X

Agarside
Member

Re: December 2016 Starters

Good luck Evie, will be thinking of you tomorrow and to everyone else yhinking of you as well.
Amanda
X
Cookiepuss
Member

Re: December 2016 Starters

Best wishes for tomorrow Evie - will be thinking of you. Let us know how you get on.

I'm putting my surgery on Tuesday out of my head and plan to enjoy the weekend.
Snail888
Member

Re: December 2016 Starters

Good luck Evie x don't forget your slippers xx
RobinJ
Member

Re: December 2016 Starters

Good luck Evie. Enjoy the wonderful sleep an anasthetic gives you! Best bit. R x
Jacquie48
Member

Re: December 2016 Starters

Good luck Evie! Hope the food in hospital is edible and that all goes well. We'll be here when you're back. Ask them for an exercise sheet for your arm if you don't already have one. Xx
Evie-S
Community Champion

Re: December 2016 Starters

I just wanted to thank you all for all your wonderful messages of support, they mean so so much and I know you will all be with me tomorrow. Needless to say I'm in a panic and now manically ironing and cleaning stuff, totally bonkers.

I can't seem to get internet in hospital for some reason, so I may be silent for a few days. I have been told that I will probably be in for 3 nights.

But as soon as I can I will come back and reply to you all properly. Til then take good care of yourselves, I'm thinking of you all and sending you loads of love, hugs and thanks for your wonderful support.

Evie xxx

SALowery
Member

Re: December 2016 Starters

God I ditto all of that too LennyG, thought this was going to be a walk in the park compared to chemo...

Evie sending you a big hug and good wishes for 2mrw

Sara
WMJ
Member

Re: December 2016 Starters

Thanks LennyGK.....I have chemo legs too....They are like spare parts, they don't belong to me! My knees ache and they feel like lead weights, literally as though they are telling me not to move them. 

understand where you are coming from on that and the eye lashes, hair etc. 

 

Hope you are doing okay today Evie and not getting yourself too worked up about tomorrow. Sending my very best wishes and a virtual hug 🤗 

LennyGK
Member

Re: December 2016 Starters

 
LennyGK
Member

Re: December 2016 Starters

Hello everyone,

 

Sorry I haven't posted for a while. I've been reading the thread but have been so tired from daily trips to hospital for my radio and just didn't have the energy to type! Think I'm still tired from the chemo too and still have some side effects such as numb toes, my nails falling off (yuk!), 'chemo legs' as I call it where my legs ache like I've just done 100 squats (I wish!!) and daily disappointment that my eyelashes have not grown back and that I haven't woken up with hair like Rapunzel lol!! Looks like I'll just have some white fluff on top of my head for a while yet!!

 

Cookiepuss - I really felt for you when you were stuck in hospital and so glad you got through it and back home. Glad you can leave that rotten chemo behind you and focus on your surgery now. 

 

Evie - sorry to hear that you have been stressed about your surgery/node clearance. I hope you get the option that you're happy with and please try not to worry too much about the recovery or possible outcomes of node clearance. I think you will find the recovery much better than you imagine. You can get through anything after chemo - we all have a new inner strength (even though it doesn't always feel like it!). We have been through one of the most awful treatments anyone could have and made it through the other side and we can tackle anything now! It's our new super power!! 

 

SA Lowery / Rooner - I know what you mean - my emotions are up and down too but think that must be normal after all of this.  I thought I would just snap back to myself after chemo but think we need to give ourselves time. We have all been focused on getting through chemo and now it can hit us about what actually happened to us and we need to get used to the new 'me'. 

 

WMJ - that's great about your hotspot. Kind thoughts going your way for your node clearance. 

 

Snail - just wanted to mention that when I take Tamoxifen I need to take it with food or I get nausea. Are you taking this or other new medication that could be causing the nausea?

 

Hope all is good with everyone else and best wishes to everyone who is about to have surgery xox 

 

 

Rooner999
Member

Re: December 2016 Starters

Thanks Jacquie.  I have been referred back to the psycologist so just waiting to here from them; I have been trying to get hold of my onco nurse today for her thoughts but cant get through to her, if I dont feel better next week I will go and see the GP to see what they suggest.  Appreciate all your comments; feel better than I am not alone.

 

I'm Claire.  45 (46 later this month), although at the moment I feel and look more like 76!!  I have two boys 15 and 14, and a soon to be 12yr old step son.  My OH and I are getting married in August as I've already mentioned and I am a college lecturer in Salisbury.      

Agarside
Member

Re: December 2016 Starters

Hi All!

 

Compared to last time I am much better, and actually going out!  So need to put on big pants and man up!!

 

Anyways, yes, today was Rads day, and Yes, I am 50!! (I don't feel it though) I am told 50 is the new 30!!

my sister is 50 next April, so we are planning a joint party next year. I may as well add my bit, I am an Independent Midwife, living in Shrewsbury with two daughters 19 & 13. I also have a lovely German stude aged 19, studying A levels and an Italian Midwife helping me out whilst feeling a bit peeky!  

 

Rads appt went very well, noting I didn't already know.  Am being booked in for 3 weeks then 1.5 weeks of booster.  Hope SE's will be kinder.  Met a lovely MW friend, who mentioned the 3rd T, may not be as harsh... and it seems I am coping better with this one than last... fingers crossed.

 

Bra's, I went to M&S a few years ago thinking I was a 38DD, to find I was a 42C and coerced into buying this very expensive bra.  Had to take it back two days later as each time I raised my arms, the bra rode over boobs and they popped out under....  Never went back.  But a 38 C is comfy.

 

Much love to all!

Amanda

xx

Jacquie48
Member

Re: December 2016 Starters

Hi ladies,

Evie, good wishes flying your way for Friday. Let us know how you're doing.

Amanda, I must have missed seeing when your special birthday is. Hope it's fabulous in spite of the appointment. Hope you are soon feeling better.

Cookiepuss how has the vein finding gone? Hope you feel better informed about the nodes, you've explained that really well. I haven't been in the least bit nauseous during radiotherapy so don't worry too much. I'm very tired and a bit sore but I'm ok.

On bras, for years I wore 38D but am actually a 34G!! got measured some years ago and back then I was thin and was measured as 32E. Sales assistant said wearing too large a back and too small a cup size was what most women do.

Rooner I do hope you feel better soon. I have some really low days, and the only people who usually know are you ladies on this thread. More on my low later. Do take care on the diet won't you. If you're able to speak to someone please do. As others have said this should be a lovely time for you.

WMJ loved your post and glad you got away.

I'm embarrassed to say the mixer hasn't come out the box yet. I'm so tired and spent the weekend doing not much st all. I will bake!! I've now done 14 radiotherapy with 6 to go. The last 5 are boosts. As Snail says these are concentrated on the tumour site rather than whole breast and clavicle as the first 15 are. As mentioned I am a bit sore and red and hot but the main thing is fatigue. I can't think straight some of the time. I'm working each day for 4-6 hours in the office then having my treatment and I wish I didn't have to work and could rest. I'm taking leave the week after I finish as I believe that's when the fatigue peaks but I resent having to use leave. Just don't want to be signed off again as I'm perilously close to half pay. To be clear it's much preferable to chemo just really tiring. My other issue is that the last few days all I can think about is that I didn't do my full chemo schedule and I'm terrified it's going to come back. I asked for statistics and didn't get them, but at the moment am convinced it's going to come back. I'm hoping this is just because I'm really worn out and I'll pick up soon. I have done my 10000 steps each day for the last 6 weeks and exercise does help. I'm also worried about the Letrozole and the Zometa infusions but know I need to just get a grip. On Saturday it was a year since my non cancer related total hysterectomy and ovary removal, I recovered so well from that then got this diagnosis only a few months later. It's also a year since I gave up smoking. How I've wanted a fag during this treatment!!

Anyway I'm Jacquie. I'm 49, 50 in January. Been with OH 14 years. No kids of my own he has two who are 20 and 21. Live in Beckenham, Kent (London really). Am a civil servant.

Know I've rambled sorry if I've missed anyone as there's been lots of posts. To end on a positive bumped into a lady at Guys that I did my first chemo with at our local hospital. Turns out she lives three roads from me! Would be lovely to have a local friend who just gets it. I'm so tired of being told how well I look, how nice it must be to be back to normal, how lovely that it's all over etc etc. So am hoping I can meet up with her soon.

Love Jacquie xxx
Snail888
Member

Re: December 2016 Starters

Cookie puss I meant to say nausea is really rare and took me a few weeks to get them to admit it might be the treatment. Of course being a bit more tired isn't helping. I also go with an empty stomach which has reduced the nausea xx