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Surgery May 2018

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Re: Surgery May 2018

Jazza so sorry to hear about more surgery you really don't need that with everything else you are facing. I will keep everything crossed that they get clear margins this time and you can start next round of treatment.

Good news from me is that ive been given dates for my radiotherapy planning appointment 13th July and hopefully will be starting treatment proper on 30th. Started taking hormone tablets last week only se is that I am feeling really sick bit like morning sickness. How ironic!!.

Love and hugs to everyone x

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Re: Surgery May 2018

Jazza,

So gutted for you. You must be so pee'd off. Hopefully the next surgery is the last one!

With the bras it may be me. Because they took away everything, and then shaved the chest muscle too I'm completely concave one side so there's nothing to stop the bras riding up. I found the Asda post surgery bras unwearable as they are so uncomfortable. They are cut far too high under arm and rub on my scars. The best for me are primark raver backed bralets. Only a fiver too. They still ride up but not as quickly.
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Re: Surgery May 2018

Hi Kip, good tips about knitted knockers. I’ve got the pattern for straight needles as I knew I would need a canny gap filled post WLE x 2 but still haven’t started as can’t find knitting needles... I know my Breast unit has them so might snaffle one tomorrow when I see the nurse as I’m still thinking no recon... all in the name of research. I’m in a m&s post op bra 38b cup so would be interesting to see if size corresponds.  I have Asda’s hook front post op bras (L) and found them really useful although it’s a shame they don’t have adjustable straps but they are racer backed... might send off for a smaller size as have lost at least 1/2 stone and hope to lose a bit more pre op. How do you find the Asda bras for size? Asda is very popular re post op gear.

hope you’re having an ok day. I’m a bit behind with dates but when’s your next chemo? I’ll have to catch up with threads... just remembered you’re to have your ct scan today.... fingers crossed for results xx

 

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Re: Surgery May 2018

Jazza - so sorry to hear you are facing more surgery, but the team sound like they are sure this time will be the final one, keep thinking of the nasties that have been removed already.   Big hugs..

 

Feenix -  Knitted Knockers:  I don't have any problems with my bra riding up, not sure why?  But on their website they did mention that some ladies like to sew a small weight, or bead into it to give it some weight at the bottom and some stitch a small piece of velcro onto their bra and knocker to keep it in place.  I just shove my in the little pocket inside the bra and it seems to be fine, I guess its not for everyone.  The bras I have found best come from George (Asda) on line, very cheap, pretty and very comfy, I got post-surgery sports style bras from their too which did up at the front for immediate wear after surgery and from day 1 I could wear these with my softie prothesis from the hospital.  Also got a lovely post op swimming costume from George too, and you can get Knitted Knockers for swimming which have a waterproof lining (made from those scrunchy shower mits).

 

Love Kip x

 

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Re: Surgery May 2018

Jazza ... really sorry about your results....It's bl**dy awful going through that again for the third time.... then the waiting for results. I had major meltdown yesterday ... just hit me full on.... I feel just as bad as before first op. I'm trying to look on the positive side and be logical about the whole process.... and remind myself about the cancer I've already had removed and minimising the risk of recurrence. It's just a shame dcis is such a tricky b@#gger. Sending a big gentle hug xx
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Re: Surgery May 2018

Oh no Jazza! So sorry you’re having to go through this. I’m truly shocked that they would consider doing more and more re-excisions. It’s just the prospect of going under the knife again and again. I do so hope that they are right and it will be just one more surgery for you and they can get everything out and clear margins on the 6th.
What would you ideally want to happen under these horrible circumstances? I feel my surgeon can no longer look me in the eye since the second surgery failed. She initially told me The therapeutic mammoplasty was a one try op and after that it would be a mastectomy. However, she then made the decision to have one more try with a re-excision. This sadly failed. We have to put so much trust in our medical team and I do occasionally feel angry with them that I now need yet more surgery. I’m not even sure why I am having chemo first and then my op in Jan. oh well it will all become clear when I see the oncologist next week I hope. I’m really sorry you are yet again playing the waiting game, Sending hugs and my best wishes xxx
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Re: Surgery May 2018

Good morning all,
I hope you slept well and are ok after appointments /news yesterday.
My news not good..... Still not a good enough margin around the pre-cancerous cells. I need more surgery (same op as 2nd one). They do not want to do mastectomy yet, they say my reconstruction after lumpectomy is good and they just need to take another small amount of tissue. So back to the waiting game for me...waiting for op on 6th then another 10 days for results. bcn said she has known some women to go through 5 surgeries before they have got everything.
I am devastated
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Re: Surgery May 2018

Thanks Michelle. Hope you’re doing ok and ticking those days off.

That’s so true Kip.

Sally ... I was thinking about bras riding up  when doing pros/cons but I’m sure I’ve seen a mention about using dressmakers tape on bottom of bra somewhere... don’t know whether it works. I’ve seen mention that the silicone prosthesis works better if on the smaller side as too heavy in the larger.

cdc... so pleased you finally had chemo...long wait though. I hope you manage to have a good night and that se’s are minimal.

xhugsx

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Re: Surgery May 2018

Finally got my chemo after a five hour wait. Was feeling fine but definitely starting to feel a little odd now. Woozy and queasy but not really sick. Think I’ll be away to my bed soon! Hope everyone has a good night. X
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Re: Surgery May 2018

Hi Feenix

Really the flat thing I'm only (just) a B cup but I have to say the surviving boob looks enormous next to the concave other side of me. I can go without anything in certain tops, but in most clothes without my knitted knocker I'd look ridiculous. Only problem is because there's no weight to it any bras ride up constantly and I have to pull them down every few minutes. It's difficult. Had I had both sides done I'd probably not bother but one sided I have to. not yet been given a proper prosthetic which may sort the riding up issue because of the weight.

Sally
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Re: Surgery May 2018

Oh those leaky eyes Feenix, I can't believe how much I've cried in the last few months and it's never far away, wouldn't think I'd have anything left to cry but it is better out than in.  

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Re: Surgery May 2018

Hi Kip, I never eat McDonalds but have had 2 since on chemo!
Feenix, Sorry to hear your disappointing results. We are at the mercy of the medics aren’t we? I hope it goes well for you from here x
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Re: Surgery May 2018

Pleased everything is going well ktk

Kip ... pleased you’ve got your ct appt.... I’m like you just want things straight forward and quick with no possibility of extra surgery afterwards. I’m in a b cup and as I intend to lose more weight I’ll be shrinking more...hopefully  Smiley LOL it’s still doing my head in though and I’ve already had a major meltdown.. very leaky eyed.... better out than in anyway.

Why did I think you were cold capping..!!

cdc... what a long wait... extremely busy is an understatement. You and ktk are well tea’d 🍵 

xhugsx

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Re: Surgery May 2018

Jazza ... I hope you had a good trip to your mam’s.

I do hope your appointment goes ok.... hoping your bcn looks after you.

Me, you and cdc have each had 2 ops.... I’m gutted I’m still on with surgery but just have to get on with it.

ive got everything crossed for you xhugx

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Re: Surgery May 2018

Hi ktk
Glad all going well so far. I saw the Sister earlier who gave me a brief run down of what to expect. She was absolutely lovely and so reassuring. Was then called to my ‘chair’ but told I didn’t need to be there yet as I’m not cold/capping. Sent me back to the waiting room and still here nearly 3 hours later!! A nurse did come to say they are still preparing the chemo drugs at the pharmacy. They are soooooo busy but this is normal!!

How did the appointment go Jazza? Sorry you had to go alone. I’m another bod with two surgeries under my belt but now told I need a mastectomy. Just got to get through the 6 months of chemo first.

Will be interesting to see if anyone has other weird cravings! I’ve had endless cups of tea and biscuits and even a sandwich but still haven’t had any chemo yet!!!
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Re: Surgery May 2018

I've finally had a phone call to have my CT scan tomorrow!   Crikey, wasn't expecting that, at least all will be done before my onco appt next week.. dreading results.. but fingers crossed!

 

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Re: Surgery May 2018

Oh I am, just spoken to somebody who had chemo 2 years go and she craved Fray Bentos Pies! Weird... enjoy the tea.
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Re: Surgery May 2018

All going well so far! Well dosed up on anti emetics so hope they do their job! PICC line insertion was fine and there are limitless cups of tea!! Witch regard eating, I think that the steroids make you hungry. Just go with it!! Kx
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Re: Surgery May 2018

Hi all,

Just reading your threads about eating lots the day before chemo, I did the same in case I couldn't eat afterwards and guess what... I can't stop eating... blimey I am starving all the time, seems to stave off the sickness when I eat though (especially salty savoury things). 

Feenix - I found Flat Friends before I made my decision to go flat and it was very useful, I also was lucky enough to know somebody who had had a masectomy and remained flat and she was so open, showed me her scars, let me see her prothesis etc and it did help me make up my mind.  Interestingly I did feel that the surgeons etc were completely shocked that I would not want reconstruction and kept reitterating that I would be "flat when I looked down"... as if I hadn't thought of that!!  Anway, post op and I can honestly say, for me, I have forgotten I only have one, I am very small chested anyway, only A cup beforehand so I think that does help, I've found Knitted Knockers" are a brilliant prothesis (free from their website or you can knit your own), very light, soft and comfy and I pop one in and nobody can tell and I forget its there.  Still haven't got a silicon one from the hospital but not sure I will wear it as ladies say they are heavy??  Whatever you choose will be right for you. I think I was swayed by the shorter op and recovery time... I hate anything that takes a long time... i.e no ice cap!!

CDC - the recon from the tummy is a big op but I read up a lot about that too and women reckon its amazing, you get a free tummy tuck on the NHS ... bonus!!

Looking back on all our posts (which actually is only a couple of months) I am amazed how knowledgeable we have become on these things, how we find our way around the NHS system and how strong we can be!  GO US!!!!!

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Re: Surgery May 2018

Good morning All.
I got back from my trip to my Mums late yesterday and gave just been catching up on all your news.
Feenix - I am so sorry to hear your results. That's 2 of us now who have had 2 surgeries and need further surgery. My results appointment is today....I am very anxious about it. The travelling yesterday wiped me out a bit so managed to sleep a bit but I am really not looking forward to my appointment. I am going to this appointment alone as have no-one to come with me.
Good luck today ktk and cdc with your appointments - what an appointment nightmare you have had cdc.... Hopefully it will all fall into place today.
Glad your results appointment went well mcnullcc. Please do let us know if you experience any se on hormone tablets.
Keep strong everyone. I will let you know how my results appointment today goes xx
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Re: Surgery May 2018

 ktk... Happy Birthday for yesterday. Lovely your daughter is with you. I hope chemo goes well for you today .... 

 

Wishing minimal side effects for you and cdc.

Hope everyone else on chemo train doing ok

xhugx

 

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Re: Surgery May 2018

Happy birthday ktk! Glad you got to celebrate before today’s chemo. I had a huge meal last night too so let's Hope the anti-sickness meds kick in when we need them. Best wishes and crossed fingers for today. I’ll be thinking of you. Hugs xxx
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Re: Surgery May 2018

Hi Feenix. So sorry to hear your news. Well done for getting your head around it. Go with your gut re recon.

So CDC, our next step today. We visited the chemo unit yesterday to have a look around and baseline tests. I had wanted to restrict my diet as I’m interested in the concept of fasting prior to chemo. However, my daughter had other ideas and did me a birthday brunch and made me a cake. Then we went out last night for a meal! Still feel full this morning so I hope the anti sickness works.

Hugs to all. Xx
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Re: Surgery May 2018

Good news about your wounds cdc but still can’t believe your appts have been so problematic. I do hope you get  lots of input tomorrow pre chemo ... I’m sure you will ... just tell them about the c*@kups Smiley LOL  I’ll certainly try the someone like me service. You will have plenty of time to think about recon later.... I think surgeons expect everyone to want recon who can have it... at least we can decide whereas other women have no choice. Lovely you were at your daughters concert though. 

Will be thinking about you tomorrow

xhugsx

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Re: Surgery May 2018

Thanks Feenix. Wounds sufficiently healed according to surgeon but the hospital failed to tell me they’d arranged for me to see the oncologist at 1pm. I was still at my daughter’s concert then so it’s very frustrating not to see her before I start chemo tomorrow. I have been given 3 different times to arrive by 3 different people. Oh well I’m going to trust the Chemo Ward Sister who rang to say I should go at 12pm so I have time to go for my CT scan at a different hospital first thing in the morning. Just want to get started now! I have found my volunteer from the Someone Like Me service incredibly helpful. Initially I wanted to know more about therapeutic mammpolasties. She had one 2 years after a mastectomy to even up the other side. It’s strange that I’m now due to have a mastectomy too. I’m sure she’ll be happy to share her experience. I really would recommend the service and hopefully you’d find a helpful volunteer too. I’ve also heard of Flat Friends but haven’t yet checked them out. I do understand how you feel about major surgery. No one has discussed the option not to reconstruct so far so I think the team are assuming I’ll want to go down the reconstruction route. I do have months to decide what I want to do and maybe worrying about it now on top of starting chemo is not a great idea! Hope you get to speak to your BCN soon and that your OH can get to see his family before your surgery. Thanks for the positive vibes and gentle hugs and sending some back to you too xxx
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Re: Surgery May 2018

Evening cdc... Hope you’ve had a good weekend.

I’ve not chatted about recon yet but my feeling is not to have any... I really don’t want major surgery using flaps and I’m not keen on an implant. They’ll decide at MDT re oncdx pre surgery + if mx whether I’ll need any RT. If I don’t need oncodx I’ll start aromatose inhibitor.  My bcn is calling me after MDT and I’ll go and see her this week. As I won’t have surgery til later in July my OH can book his flight now and see family Smiley LOL

It is certainly easier having fewer choices cdc but it’s still a big decision to make, weighing up the pros and cons, but sometimes it’s down to how you feel. I’m going to do more reading before I see bcn and I may use the ‘someone like me’ service and access ‘flat friends’.

How are your wounds and are you still starting your chemo tomorrow? If you are I’m hoping all goes well.

 

Sending positive vibes and gentle hugs xx

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Re: Surgery May 2018

Oh no Feenix! Sorry you’ve had such c***p news. You have my full sympathy/empathy. I have only been given two options with regards to what kind of reconstruction I can have when I have my mastectomy in Jan. Have they said what would be possible in your case? It’s certainly an individual choice. I’m leaning towards going for a double mx with immediate reconstruction using my tummy!! It’s a longer op as it’s more complex and requires a vascular surgeon as well as an onco-plastic surgeon to work together. The recovery is also much longer but im not sure if I can face having implants which will only need replacing in 8 years or so. Using my tummy should last the rest of my life. However, If it doesn’t work there will be no options for me to have further surgery other than to go flat. I’ve accepted that. I think things will be a lot clearer for you once the MDT has fed back what it thinks should be the way forward. In many ways having fewer choices has made making decisions much easier for me. Do take care. Sending hugs and my very best wishes xxx ps Are they considering the Oncotypedx test for you pre further surgery?
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Re: Surgery May 2018

Hi Kip

when I was first diagnosed I thought about mx and I felt that no recon was the way I would go. I may well stick to that as I don’t want any big surgeries like diep etc and I don’t think I would like an implant .... I’m only a b cup and if I lose more weight that’ll reduce too. My 2 x wle have left my boob much smaller and very different anyway... I’m weighing up pros and cons for recon. 

Hope the cold cap minimises your hair loss xx

 

Linda... recipe is on page 10 x

 

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Re: Surgery May 2018

Hi Feenix, oh dear sorry you have more decisions to make.  My Mx no reconstruction was very straightforward and healed so quickly, but you really have to look at all the options out there as it's definitely not something everyone can live with, I have completely accepted it and am finding losing my hair harder than losing a breast... Something my OH finds very confusing.  I'm sure your team will help provide you with all the answers you need, make that list!!!  Take care Kip

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Re: Surgery May 2018

Feenix. I am interested in your egg curry recipe etc. Could you let me havee the recipe please and any others you may have? Many thanks. Sorry to hear your bad news. Consider all your options re reconstruction as you dont want to burn your bridges as my surgeon said to me. x
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Re: Surgery May 2018

Well....saw surgeon.... results show more dcis found ... awaiting MDT tomorrow ( surgeon away next 2 days & wanted me to know results asap). Have talked mx with her and am pencilled in later next month. So now I have to think recon or not.... decisions again although I may go with my initial thoughts of keeping it simple and going for none...need to research again and will see Bcn later in week and talk things through....she’s also giving me a call tomorrow after MDT.  Have to await MDT tomorrow anyway...see if I need oncdx and if mx whether I need rt to scar area. Need to get another list written.... drat.

Hope everyone having an ok Monday.

 

positive vibes gals

xx

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Re: Surgery May 2018

Fennix meant to say hope you get some good news early this week xx
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Re: Surgery May 2018

CDC. Great news regarding the dressings. Found this thought on Internet yesterday and think it will be my mantra for a few weeks.... A litte progress everyday adds up to great results... Hope all goes well over the next few days. Still waiting for appointments for bone and CT Scans and Rads planning meeting. Started on the hormone tablets on Saturday fingers crossed any se will be minimal.
Hope every one else is OK xx
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Re: Surgery May 2018

cdc

 

Oh that is fab that they worked, take one with you to show the surgeon, surely at the end of the day it is what is best for you and if these work without causing you the problems that has to be good.

 

Good luck

 

Helena xxx

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Re: Surgery May 2018

Pleased the mepore dressings were ok cdc. Hope you can ditch the vacc dressings and start chemo tomorrow. Fingers crossed for a good week all round xx
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Re: Surgery May 2018

I bought some Mepore over the weekend so thanks for the advice.  No reaction so saved me a trip to the hospital his weekend.  Hope the surgeon will sat I don’t need the PICO dressings anymore and chemo can go ahead tomorrow.  Hope everyone had a good weekend xx

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Re: Surgery May 2018

This is informative Daisiemoo especially as I will be having a mastectomy in January. Thanks for sharing your experience
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Re: Surgery May 2018

It’s interesting to hear that you just have mepore over your wounds now Feenix. I don’t really know what was meant to happen with my wounds but from what I can gather, due to various reactions, the nurses are having to try new things and change them regularly. The Pico dressings, whilst annoying, haven’t produced an allergic reaction thank goodness. Your nursing background must be helpful. My dear friend, who is still here 8 years after treatment for very aggressive BC, has helped me enormously by telling me what she would consider normal and when I need to get things checked out. I’ve been sleeping well for the last couple of nights with the help of medication. I checked with the GP and he is happy for me continue as I need my sleep to aid my recovery. Hopefully I won’t need them forever. Best wishes xx
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Re: Surgery May 2018

That’s a very helpful suggestion thanks Helena. Will try and get some this weekend. Xx
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Re: Surgery May 2018

I have never reacted to dressings at any time but after my pre surgery blood test I had a square plaster which left the area red and 2 months later I have a feint line on my upper arm side of where the plaster was.

 

After my masectomy I had a dressing as most do and this was removed 2 weeks later (although I had to replace after 5 days as it got wet in the shower) along with the scar strip dressing.

 

I now have a 3 inch line scar from the middle of where my boob was to my under arm about 1.5 inches above my masectomy scar, which was the edge of my dressing, I suppose I should be fortunate I do not have a scar all the way round where the dressing went!

 

 

 

 

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Re: Surgery May 2018

Enjoy your weekend mcnulcc.... a walk with pub as a destination sounds like a plan . Hope your onc appt goes ok and you get a time line for start of zaps xx

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Re: Surgery May 2018

Morning cdc  ... It’s always frustrating when you have a reaction to dressings. I had steristrips and  mepore dressings on, which ladybowler mentioned and was ok. (I can get a little red when leaving a plaster on, eg after bloods so I was wondering how I would fare with a dressing on longer. I’d say I was sensitive to some things not allergic ).  At the minute I’ve just got mepore over my wound, for support, and have been ok with that. There are steri strips and suture strips so depends which one you’ve got on your wound... can try other things tho plus there’s tissue viability who can be involved  ( soz ... retired nurse so start to go into mode Smiley LOL)  Very disappointing and frustrating that you couldn’t go for your pre chemo appointment. I hope you managed some Zzz’s last night and are having a rest day, just potter. Xx

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Re: Surgery May 2018

cdc

 

Have you tried Mepore dressings, they are the only ones I can use on wounds, but not the ones with the waterproof edge to them

 

Mepore Self Adhesive Absorbent Dressing

 

You can get them in different sizes from the likes of Boots/Lloyds Pharmacy etc.

 

Helena xx

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Re: Surgery May 2018

Appointment with oncologist this afternoon to talk through radiotherapy. Still no appointment for bone scans so will mention this afternoon. Feels like we are all having appointment problems this week. I really hope you all get sorted. My son is away at the moment and I don't have a dad so I'm trying to plan something nice for fathers day for my OH he has been amazing through all of this and doesn't deserve some of the c..., I have given him the last few months.. I might try and find a nice easy walk with a pub or similar at the end to treat him. What ever you are doing this weekend ladies try to enjoy get plenty of rest and spend quality time with your loved ones. Battles with appointments restart Monday xx
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Re: Surgery May 2018

Appointments appointments.... blughghghgg!  They do my head in....  You are all coping so well with all these changes to appointments.   CDC - i have just taken off my wrist bands but very nervously...they will be going straight back on if anything changes... may be a permanent fixture until September!  Smiley Very Happy

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Re: Surgery May 2018

Thanks Feenix. Have your options been discussed with you already? I got a phone call this evening from the Sister on the chemo department who told me she didn’t have enough staff for me to have my pre-chemo appointment tomorrow so it’s been cancelled and there’s no time to see them before my first chemo which is scheduled for 1pm Tuesday. It’s frustrating but I’ll be glad to have a break from the hospital tomorrow although I expect I’ll be asked to go In for a wound check. I seem to have had yet another allergic reaction, this time to the new wider Steri Strips! It’s so frustrating. Going to make sure I get plenty of rest tomorrow whatever happens. All this toing and froing is exhausting. Hope we all get a good nights sleep. Take care xx
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Re: Surgery May 2018

Hi cdc... I get an email from bcn and she’s looking out for my results... my oh phoned lab again so he will get a call when my results are ready, hopefully tomorrow.  I’m 2 weeks post op so better than last time and 2wks is average for results. Missed MDT this week tho ... don’t know why I can’t be told results as I know what my options will be anyway !! Waiting for results is bl**dy awful as we all know. I do hope your results are ok including genetics in July, and your wounds are healed so you can get to start your chemo. All the best for your pre chemo appointment.... stay positive as much as you can....  xhugx

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Re: Surgery May 2018

Glad you’ve finally got some dates confirmed ktk. We’re you offered a PICC line when you found out you were starting chemo? I’m still suffering from an injury caused by the anaesthetist when she put a canular into a vein on my hand which was far too narrow. It’s still bruised and swollen and very painful. I’ve had problems previously with canulars so it’s making me extremely nervous. In some ways more nervous than any other aspect of the procedure. My OH thinks I should request a PICC line especially as my chemo is due to last 6 months. I wonder if your New Patient assessment will be like my Pre- chemo appointment tomorrow? Ive been told it will be very informative so hope you find the same is true for you. I also hope your first chemo runs to time, I have my CT scan before chemo on Tuesday and have been told the first session always takes a while so I should expect to be there till the afternoon. Glad your last day at work for a while wasn’t too stressful. Sending best wishes and hugs. Xx
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Re: Surgery May 2018

I’m really not sure what my results test are for next week Feenix! Genetic testing was done separately and won’t be back till July unfortunately. Ive had various blood tests to test liver function etc.. and they should have my bone scan results by then so maybe that’s what it’s for. I’ve started to dread results appointments as there always seems to be something else to worry about, Trying to stay positive. It’s hard to believe your still waiting to hear about your results Feenix! Not even getting a call after you’ve left them messages is really shocking. Hope someone gets back to you as a matter of urgency and that you also get a grovelling apology that you’ve been mucked around so much. Take care and positive vibes to you too xx
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Re: Surgery May 2018

Getting the scans and tests out of the way is the only thing making all the stress and hassle worthwhile for me Kip. I hope yours are all sorted soon. Glad you’re still doing ok after the first chemo Kip. You’ve been amazing! I’m sort of hoping the nausea is like morning sickness as, although I had extremely bad morning sickness, I know it will end and in fact it should only last 6 months rather than 9. Are you still wearing the bands? Must remember to buy some. Hugs to you too xx