Starting chemo October 14

[LainieG]

Hi ladies. You won't believe this. It's one thing after another! My right 'breast' has swollen and is noticeably bigger than the left. Can't figure out how this could happen as all there is is skin, muscle and tissue expander??? I've called a friend who is a nurse in the plastic surgery dept I attend and she's booking me in to see the surgeon next Friday. I'm really worried though. Imagining all sorts of things. What if it's another tumour pushing on the implant? Probably daft thinking but I'm paranoid about everything. I'm sure you all understand that feeing well. Has anyone else had problems with implants? Xxx

[MysteryMouse]

Thanks for the info jingo I will contsct them 🙂

MM

xx

[Peta]

The holding the breath technique sounds really good.  Mine was my left boob too, but I think it's all to do with angles and where the lump was, so it sounds like a good thing to do if it looks after you more carefully!  You said you were crying Madam, are you feeling a bit more positive now?  It's all such a shock to the system isn't it?

I'm looking forward to meeting you in London shortly! 😄 xx 

[Madam]

Ladies, just to explain that the Holding the breath technique is because it is my left boob! Heart has to go down and back to stop it being affected hence the nose clip and snorkel! Feel like some kind of has been synchronised swimmer! For the London ladies, I will be at CCL every day from now on. Sorry to hear about NHS and dignity stories, maybe being bankrupt by private does have some advantages! But still get 9 people in your room looking at you crying five days after surgery as if you're a freak!

[jingo_x]

Hi MM - call Eurotunnel.  I paid that for an annual policy including winter sport for 5 of us.  no tricky medical questions you just have to be stable and not waiting for treatment.

[MysteryMouse]

Morning lovely ladies 🙂

I wonder if anyone can advise on holiday insurance?  I have been given a quote for £115 for a 2 week holiday (this is just for my insurance does not include husband). Have tried the ones previously suggested and they seem around the same price.  Seems expensive.  Anyone had a good quote which is more reasonable?

Thanks in advance 🙂

MM

xx

[LainieG]

What awful stories ladies!! I really feel for you. Being in hospital,whether visiting or being treated is bad enough but to be denied some dignity is terrible. It costs nothing to care and empathy should be an essential in a caring profession. Some nurses really can't be bothered and will set in place routines that make their lives easier instead of thinking about making the patient comfortable. Thinking about all of you and sending hugs 💖💖💖

[bettypoppit]

What utterly dreadful past experiences you have all had and it must have made going through the bc treatment, all the more difficult. Bl**dy well done all xx

[Codiesue]

Thanks Linzz, anything that makes us feel vulnerable and undignified is so wrong if we are in hospital we are either ill or visiting someone else who is so we really don't need and further stress or hurt. Just don't know why some nurses go into the profession. Sue xx

[Linzz]

jingo_x, codiesue and mysterymouse I am so sorry to hear about these awful things that have happened. What I described is nothing compared to what you've each been through.

I guess my greatest loss of dignity was whilst hospitalised with a full leg cast. I was left on a bedpan whilst staff went for a break and was discovered unconscious legs akimbo 20 minutes later. I suppose that's a hilarious image, but at the time I could have died from embarassment. I was refused a shower (it had been 4 days by this time) for no other reason than it was too much bother to find something to protect the cast. I complained about that and a lovely male nurse came with a bin liner, taped it over my cast, then left me to myself to wash. I can still remember that shower vividly as it was the first shred of privacy I'd had since my accident and I sobbed my heart out - not about the broken leg, but about how awful I found the whole experience. I vowed I would never be admitted to hospital again. Little did I know...

Anyway, I wanted to send big hugs to everyone xxx

[MysteryMouse]

Sorry to hear some of you have had problems with lack of dignity.  During my rads I was often seen by 2 young men and felt very vulnerable lying naked on the table with my one good boob all exposed.  They were very professional but not a good experience. 

Many years ago (26 and 25) I lost 2 sons to stillbirth and then premature and was not treated very well at the hospital I was in and like some-one else was just put in with other mums.  I was also made to feel like I was being a nuisance when I had concerns which turned out to be justified and was told I had constipation when in fact it was labour.  I still battle with hospital fears and of course with everything that has happened with the bc you have to trust in the medical team but it's hard.

My sight has alos been damaged by the chemo and now have to wear glasses for distance and reading.  I was hoping things were going to improve but have been told it's not.  Oh well at least I can see with the glasses on only trouble is because they are varifocals I keep feeling sea sick with them! 😮

Thinking of colouring my hair with a semi-perm colour.  Have got a L'Oreal one called Berry Red just trying to pluck up the courage to do it!! 🙂

MM

xx

[Debtex]

Oh dear . I agree sometimes dignity is not respected . I refused to wear the pink smock last time I had a consultants appointment . I know it's to speed things up but I hate wearing it . I also had similar treatment jingo after giving birth . X

[Codiesue]

Hi just browsing from November and wanted to say Linzz and Jingo so sorry to hear of your awful experiences with nurses who have no empathy or feelings. I had an awful experience with nurses 5yrs ago when my 79yr Mother was told she would have to wet the bed as they were to busy to take her to the toilet!! She had last my dad the week before and when I complained they said sorry they din't know the trauma she had been through! What the **** has that got to to with it, (My Mum passed away the following week)I had several meetings with Nursing manager and asked fro a restorative justice conference she was shocked but agreed. When the day came she informed me they were not the nurses on duty that night when i asked why she said "I have to protect my staff" pity she couldn't protect the patients! The outcome was further training would be put in place, I told her all the training in the world will not teach them to care that comes from within and if they haven't got it they should not be in the job.I am glad you complained they need to be aware of this callous behaviour.

I have had great care from NHS over last 9 months but sadly some staff do bring it down. Take care sue xx

[bettypoppit]

OMG,  how totally awful Jingo_x and I'm not surprised you were upset yesterday either Linzz...just want to give you both a big loving hug xxx. It is a terrible shame and wrong that much more thought and care doesn't go into the decision making to allow for patient dignity and respect. I couldn't agree more regarding why go into a nursing profession, if treating patients with understanding isn't part of the deal. 

[jingo_x]

OH Linzz I can imagine how upset you were - I don't know why patient dignity is so hard to achieve it usually costs nothing.  I am having MLD every day this week as a sepcial one off, but the room in which I get naked also has a store cupboard so throughout my treatment staff pop in to get things, have a chat to my therapist and then pop out again.  i am there lying on the bed naked with a towel over me!

I am still mentally scarred from 2 awful miscarriages 5 years ago, having been admitted by ambulance with heavy blood loss I then had to go for a scan in the ante natal ultrasound department.  they parked me in a wheelchair in the waiting room with my drip, wearing a blood stained gown with dried blood all down my legs and over my feet and sitting on a blood stained Pampers mat.  I was sobbing having lost my baby and I was left alongside all the healthily pregnant ladies and their partners for over an hour waiting for my turn.  Awful for me but also awful for all those healthy pregnant ladies around me.  The second time I begged them not to leave me there again so they brilliantly parked me in the Reception area alongside the queue of people checking in.  I got over the miscarriages but as you can see I am still hugely upset about the lack of thought for my dignity.  I did complain and it did make me feel better! 

[Linzz]

Had my pelvis/abdo/chest CT yesterday, and get the results next week. Trying not to worry. I found the whole experience quite upsetting - I guess I had put all the medical stuff behind me to some extent and having to be cannulated and be in a hospital setting again just hit me quite hard. Also, they expected me to sit around in a public waiting room with other patients (of both sexes) with no bra (and hence no boob) on. I spoke to two female nurses about it to voice my disquiet and got not a shred of empathy from either of them. Their response was that the through-put of the department was too high to have things any other way. Don't get me wrong I am very grateful for what the NHS provides, but when a unit is too busy for patient dignity I think that's very disappointing. And I'm not sure why nurses become nurses when they are clearly so lacking in people skills. It didn't help that just before I went in there was an elderly man in the scanner screaming in agony and the same unfeeling nurses physcially restrained his equally elderly wife from entering the scanning room to help him and were very rude and dismissive of her. Awful.

[bettypoppit]

Hi Madam, lovely to hear from you and don't you worry we are getting ready to shuffle up 🐧🐧🐧 a little more, for you to join us on the podium....you're on the home straight now 😀.

I only had to breath normally and keep still, whilst striped to the waist bareing all! Not especially dignified but at this point in the proceedings i guess that doesn't matter too much.  I had to go braless for about 2 weeks as my skin totally broke down underneath. I had some cream, but it was slow to work so i did eventually visit my gp and the nurse sprayed something on my skin....possibly with silver in??!?? and that seemed to help. I was slathering on the emollient cream all through rads, but it didn't stop the breakdown. Like any of the treatments, we all react differently and i don't think everyone suffers....I really hope you don't. Good luck for Friday xx

[nicnac15]

Hi madam i didnt have to hold breath just breath normally and had to wear nothing on my top apart from my lovely purple zip down top they gave me so they could access my chest to see my tattoos.
Lainie glad your getting some answers now and feeling happier that poison has sure give us problems. Xx

Eventually got my mri scan last night 45 mins in it and came out with stiff shoulders brought horrible memories back from last july and now trying very hard not to think about results, on a positive note i go away in 2 weeks and cant wait for some sun even though we have to be careful in the heat.

Ive sent cards out to chemo and radio but not onc will get her one after i see her on 30 june.
Xxxxx

[Peta]

Hi Madam

Don't worry, we're keeping your podium space warm for you!

Good luck for radio on Friday. I didn't have to do any special breathing thing, but I've heard that other people sometimes do.  Did anyone else have to do a special breathing style when in the machines?  I was just asked to breathe normally and not move at all.  

Do you know how many radio sessions you are having?  Not too many I hope.

Bras, I bought a completely soft non-wired bra from Mark's and Spencer. It's a kind of sports bra shape and it's very comfortable.  If you buy it a bit too wide around the back you will have room to get something soft like a new soft flannel or a very soft silk scarf in there, to cushion any sore bits that are chafeing. 

You might have to take the bra off for the actual radio session - I don't think they'd allow you to wear a bra with any metal at all in it, and they need to be able to find and see your tattoos to position you correctly. 

Very good luck, you'll be fine! xx 

[Madam]

Hello Ladies, Lainie: almost comical but not at all funny is it! Honestly, there IS a book from us lot. Congrats to you Junash and I look forward to meeting up, which I think is in two weeks? Well, I had my planning yesterday for Radio so all go to start Friday . The scariest bit is the snorkel breathing bit! Jeez! Didn't expect to be nervous at holding my breath for 20 seconds. The discomfort and pain still ongoing from the surgery makes me dread any more of s burning sensation! Any advice on creams or bras! Radio said not to wear one but reconstruction says I need to! So, cheers to my last three days without an appointment! Chicks, please don't shut down the podium yet!

[bettypoppit]

Hi Debtex, my big toe nails are yuck too...they both look like they are going to come off they haven't - as yet. I wish they would so I can have some new nails grow. Like you I'm not planning on wearing sandals or flip-flops anytime soon! I think any exercise 'ploddy' or not is good for the mind, body and soul ....onwards and up 😀.

I did a thank you card to my onc, chemo nurses and rads team - the NHS seem to get more than its fair share of criticism and I too am greatful for their care and I wanted to say thanks. I inadvertently missed out my surgeon tho....that part of my treatment seemed already in the distant past (and another building)with so much gone through with chemo. I should put that right. xx 

[Debtex]

Lainie , that sounds reassuring . Fingers xd it's the dreaded taxol and that the problem with your sight diminishes .
Yes ladies feeling the pain in my 'bad' boob is scary but also it doesn't feel dead or numb like before so I guess it is the nerves . I'm not going to worry - what's the bloody point ? 😊
I'm hitting the gym and as well as the rowing machine and bike I'm giving the cross trainer a go ! I'm a bit ploddy on it but I think it might help my co ordination .
I've not thrown myself off the horse again lol ! But will have another try in a week or so .
my feet / nerve pain is still staying minimal and I'm so pleased . My feet still look puffy and my big toe nails look disgusting I'm almost glad the weather is bad so I can keep the under cover . I don't feel like putting varnish on them as I need to see what's going on underneath ... Yuk !
Has anyone sent a thankyou card to their onc ? I did to the chemo nurses and radio staff and bought chocolates too but not for my onc ! I feel guilty so I'm going to send him one . I spent a lot of time moaning and groaning to him and now I'm feeling a bit better I want him to know I'm great full for what he and his team did for me - particularly when he gave me the option of a plan b when things went pear shaped with the docetaxel xx

[bettypoppit]

Hi LainieG, blooming docetaxal has had such an impact on our general health, but great news that you are now getting some answers. xx

Debtex, great to hear that your feet are improving as you've had such a bad time of it. xx

[LainieG]

Debtex so glad your feet are improving. You've had such a hard time with them. Hope the other pains start to go soon for all of you suffering them. Xxxx
Just been to the eye clinic and the consultant thinks it's probably the docetaxel that's caused the problems. I'm having a ct scan now since I can't have an mri then I have to see the neuro opthalmologist in 4 weeks. Feeling much better about it now. I'm assuming it'll just get better on its own if it's just because of the chemo xxx

[bettypoppit]

Me too on the painful and lumpy boob and I've also had it where it seems to have a pitted line dissecting it in half....weird and a worry, but I'm back on planet denial so haven't made it to the gp's.

[Peta]

Hi NicNac

I have the breast and underarm pain too.  Sometimes the pains feel quite sharp and stabbing.  I was told that it's the nerve endings restoring themselves, so nothing to worry about.   I'm the same on feeling for lumps though! 

Good luck with your appointment today Lainie.  🙂

[nicnac15]

Debtex interesting you said about having pain where lump taken out i too have started with pain same area and under armpit where it feels like the scar tissue is ive totally stressed myself out thinking ive got something else and im constantly feeling. Xx

[Debtex]

Hi all I've been away for 3 days for a little break with my family . Junash congrats on finishing your treatment . Lainie , I feel for you and hope you get sorted out soon . My hair is growing thicker each day but never looks any longer ! I have had some slight pain where the lump was removed which scared me a bit ,however it has felt numb for so long and now feeling is coming back so I suppose that's normal . I have managed 2 nights without amytriptyline and my feet seem no worse without it so that's good . I'm walking much better now and feel stronger but still not back to full strength yet . I'm now planning to lose 9 pounds to get back to my normal weight - that will be quite a challenge ! Xx

[LainieG]

Hi riversidedawn my ports are under my armpits like you. They have to stay because of the type of reconstruction I'm having and I couldn't have them removed just now anyway because I'm on blood thinning injections until the end of June. You couldn't make it up could you. I don't know what's going to happen next. I hope another type of scan will be enough. My next appointment is on Monday so I don't have too long to wait anyway xxx

[riversidedawn]

Hi Lainie, is your port in the centre of the implant or separate? I had expanded put in last week and the port is under my armpit so I can have rads then remove the port or replace the implant. If you've had rads then it should be the same and you can have the port removed then the MRI?

[LainieG]

It's still the same Peta. I see the consultants on Monday and Friday. Really hoping they can do something. I'm fed up with it all. Can't believe this is happening just after all the bc stuff xxx

[Peta]

On no Lainie!   That's pants, how can they have not known?  I really hope they can sort something out for you soon.    When do you see your two eye consultants? I hope they at least can help.  Is part of your eye still greyed out, or is it improving?  I hope it goes away, never to return!

Junash well done! An empty diary is a delight isn't it?  😄   

[LainieG]

Junash it's great to see you're so happy. A few more weeks off work with no appointments will be just what you need. It's lovely to have you cosied up with the rest of us on the podium. Xxxxx
Bettypoppit I'm not sure what happens next for me. The radiologist said my doc might order some other type of scan. Felt like screaming when she said I couldn't have the mri and burst into tears when I got back to the car. I went to Nardinis for a giant sundae to cheer me up then went to my friend's last night fir wine and moans lol. Feeling a bit better today but anxious to find out what happens next. I have two appointments at the eye clinic with 2 different consultants (don't know why and the secretary at the hospital didn't know either!) So hopefully I'll learn something from one of them xxxx

[bettypoppit]

Junash - get you out on the razz the same day 😉 lol. Congratulations on coming out the tunnel of treatment 🍻 It's great to be cosying up on the top podium 🐧🐧🐧 xx

[bettypoppit]

Oh my word....I would have flipped LainieG... I'm so sorry to learn you've been let down like this. So what happens next? Big hugs xx

[Linzz]

Congrats Junash!

LainieG - that is un-expletive-believeable!

[Junash]

How frustrating Lainie (sorry bit of an understatement!) - they must have come across this before with metal in bodies?!

Just got in from a Macmillan 'night in' event - was fun, had a couple of beers and nibbles, a nice way to celebrate end of rads.

thanks for shuffling - loving the view from the top podium. Looked in my diary - no appointments next week, feels very odd - I'm signed off work until end of June then may think about a phased return, I'm only 3 days a week but the thought of commute already makes me feel weary

Tomorrow morning I must remember to start taking the tamoxifen!!!

Night all xx

[nicnac15]

LainieG how annoying you didnt get your mri again i know how frustrated you must feel and just want it out the way, i know i want mine out the way. Fingers crossed you hear soon xxx

[AMDriver]

Oh for goodness sake! You would have thought they would have known that beforehand.

What did you do?/ I think I iwould have burst into tears with the sheer frustration of it all.

xx

[LainieG]

Would you believe I didn't get it again!! Apparently the tissue expander implants have metal ports so they couldn't do an mri. So frustrating. I don't know what will happen next. Xxx

[bettypoppit]

Hi LainieG, hope your MRI went well this afternoon xx

[Peta]

Good luck Lainie

I hope it goes really well and they don't keep you hanging on for results.  Let us know how you get on.  I'll be thinking of you.  xx 

[LainieG]

On my way to have my brain mri Yikes! At least I should know soon whether I have a brain lol xxx

[Peta]

Yey Junash!  

You might have had your last one by now.  Huge congratulations on getting all the way through to the other side.    Well done, you've done it.    

[bettypoppit]

Yeah, go girl...Junash, ring that bell...amazing marathon of rads you have endured and now you are almost done 😀. We're shuffling up ready for you to join us (again?!!?) on the podium 😀🐧🐧😀🐧😀 xx 

[nicnac15]

congrats for tomorrow junash on finishing yours rads. Xxxx

Not been on for a while been busy at work, now its kids holidays should of had my mri scan today but the machine has broke so i was a little miffed off when i got the phone call as id worked myself up for it. On a positive note i had a lovely weekend my mums birthday party at her home and i braved it with no wig and got some lovely comments. Just not brave enough to do on the school run yet kids still dont like my hair short. Xxx

[Murphy1963]

Woohoo junash, well done you xx

[LainieG]

Yay Junash. Congrats!! Xx

[Linzz]

Hurray Junash! Hope you have something nice planned to mark the occasion

[Junash]

Start shuffling pleas - last rads tomorrow !!! Xxx