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All at sea here

smelltheroses
Member

Re: All at sea here

Hi contrarymary, so glad you are feeling well and up and about. I was home last night and am feeling good. I also had the reduction so am trussed up like an oven ready turkey at the moment but amazingly pain free. I am just taking paracetemol and diclofenac but think more as a precaution than anything. So glad it all went well for you, I was thinking of you when I was in hospital. Well, we were diagnosed at the same time and had surgery at the same time so we have a bit of a bond there. Take care, I will keep posting to let you know how I am getting on. I get my results on 3rd July. xx

contrarymary
Member

Re: All at sea here

My contraryness is about not letting this blasted diagnosis and disease get me down! It's not going to stop me. My mum had MS and refused to behave or think like a sick person, and I'm going to do my utmost to follow her example.

I'm trying to prepare myself for what comes next.

I already know I'm 8/8 for both ER and PR, so tamoxifen is a dead cert as part of my treatment plan. Apparently my tumour is borderline for chemo. So I could be joining you on that particular joyride very soon!

It's strange, because I see the dressings and the puncture marks from the canulas for anaesthetic, and drip in my arm, but it still feels fairly surreal that I've had this op and am forever now a breast cancer patient, even if, as I hope, it never returns.

I feel I'm in good hands with the team at CX hosp, so I'm sure whatever they advise me to have at this stage will be worth gritting my way through. They have a review of the results, involving all the different disciplines before they formulate a treatment plan - it's not just all about what the oncologists say, so I know they will have thought through everything really carefully before they explain it all to me on 30th June.

I'm currently hoping I will be able to work my way through the treatment - but may have to see if I can do more of my work from home. At least I should have a window of opportunity when I get my treatment plan to discuss this with my bosses. I just want the anchor of normality there while I go through this.

Mumszy - this your first chemo, or just first FEC? I know there are loads of different chemo drugs given in all sorts of combinations. Sorry you're feeling so sick - hope you find a treatment that is effective for the nausea, whether it be drugs or something like ginger or peppermint tea, or those seasickness bands. I'm sending you my positive vibes that the nausea subsides!

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Re: All at sea here

Well done contrarymary but may i say you are being far from Contrary!! Had 1st FEc yesterday been pretty sick but like you glad to know Im getting rid of any rubbish the squatter may have left behind!!

contrarymary
Member

Re: All at sea here

I'm still feeling great - had a wonderful night's sleep last night (no disturbances, and much cooler than hospital). Still no pain (and long may it last!) but I'm already getting itchy from the waterproof dressings which will have to stay on until 30th June. What state they (and I) will be in by then, I don't know!

I'm allowed to drive - so I took myself along to the GPs this morning to tell them what was going on, when I'd get my results, and to get the excemption certificate to complete and send off - and also a sign-off from work, as my surgeon doesn't want me going back until I've had the results (and who knows, if it ain't good news, I might not be ready to go back then anyway).

I'm very cheered by that image of the tumour lying in a petrie dish 😄 Susanne, it made me really smile! I've evicted the squatter, and I just hope that all the follow-up treatment will ensure all its baggage and belongings follow it out the door, so to speak!

I spotted all sorts of happy coincidences in hospital, which seemed to me to be good omens.

So for now I'm just going to try and concentrate on healing myself and resting, so I can face the results and my treatment plan. I know I've only just started on what could be a very long path, but having taken the first steps now, I want to see it all through.

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Re: All at sea here

Brilliant! I was scared of the anaesthetic too, having had a bad time the last time I had it - sickness, and taking ages to come round, followed by several weeks of dizzy spells. But that was in 1986, this time I was awake within a couple of hours, no sickness or dizziness at all.

And it's a lovely feeling knowing that the bugger's lying somewhere in a petrie dish, instead of in your boob! Just be ready for a possible come-down from the euphoria - though you won't necessarily get that (I didn't.)

contrarymary
Member

Re: All at sea here

Thanks for all those good wishes - I'm back home already.

I'm euphoric - it's all happened, and if anything, the thought of the general anaesthetic had freaked me out more than my diagnosis! So a big burden of fear has been lifted. And the most amazing thing is that I'm in no pain... A bit achey - and I know my dressings will be an itchy hell before they come off (on 30th June). Sentinel node is barely in the armpit - really on the edge of the breast, so my arm mobility is great.

Hospital stay, all-in-all was a really good experience (this time, at least, beginners luck perhaps) with lovely nursing staff and a great team of doctors etc.

Smelltheroses - you are in my thoughts, hope it's going as well for you as it has for me.

I find out what they find out on 30th, so it's now a waiting game again...

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Re: All at sea here

Good luck to you both - "see" you soon.

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Re: All at sea here

Good luck both of you , Contrarymary and smelltheroses, ill be thinking of you and hoping and wishing it all goes smoothly for you. The surgery really isnt that bad, but if it hurts get something for it, no point in being a martyr!! Im sure all will be fine and looking forward to hearing from you both afterwards.. xx

contrarymary
Member

Re: All at sea here

Hi Smelltheroses

Oooh yes, good luck to you too! I hope your op goes well.

I've decided the total chaos which is my home is just going to have to stay that way! No more fretting about the gazillion things I've not gotten done yet.

I'll have a two week wait for the results!

I won't be back on line until I get discharged.

I've got visits lined up for tomorrow evening and after the op.

Definitely compare notes the other side. I'll have my fingers crossed for you too.

All the very best!

smelltheroses
Member

Re: All at sea here

Hi Contrarymary, I go for the radioactive injection tomorrow as well. Been out for new pj's today so am about as ready as I can be. Hope you are OK. Will be thinking of you as I am waiting in hospital on Wed morn. So in case don't get the chance to post another message, good luck and we can compare notes the other side of the op. Take care x

contrarymary
Member

Re: All at sea here

Met my surgeon today - so now have lots of drawing on me!

Partly that's because there is some question about whether or not I need a guide wire, so the drawing is to aid the debate when I have an ultrasound (which I was having anyway) tomorrow. I also get my radioactive tracer tomorrow.

I'm going to try and get an early night tonight - hope I can sleep!

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Re: All at sea here

The walking's really important. The first day I just walked up and down the corridor when Mr.Grumpy came, but then I started walking on my own, and in the end I was going outside on sunny afternoons (the PRH has grassy bits all round it - once when Mr.Grumpy was in for a couple of weeks I took the dogs up and we walked them along the trees at the back!)

contrarymary
Member

Re: All at sea here

Thanks for the advice on the bag, guys!

I will hunt out a bag that I can use & lug around. One of my other friends told me a good way to get 'going' again is to get up and walking a fair bit.

Another thing which I'm struggling with is getting visits organised. I've no idea when I'll be out of surgery, or when visiting hours start, so I've had to take a flyer on it.

Generally, I like to be organised, but with this, it's impossible!

I'll look out for that crying jag, Evie - thanks!

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Re: All at sea here

You need quite long handles on the bag - if it's too high, the drainage doesn't work properly.

Daisy_do
Member

Re: All at sea here

The bag I took was A5 size canvass and just about big enough for 2 bottles. I suppose a starbucks one is just as good - I am sure you can get a couple of these free and so long as they dont get wet will be absolutely fine.

It just makes it easier to go the toilet and wander around etc., coffee shop or landing to see the visitors off.

The hospital gives a large silver carrier bag and the bottles swish around too much. A smaller bag doesn't allow the bottles to wander and you dont notice you have the drains!

The other thing is that they do the SN biopsy during the operation as they put the dye in first.

all the best

Good luck

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Re: All at sea here

I've been told your hair doesn't take the colour so well after chemo. One person I know has a persistent grey patch that won't colour at all.

Daisy_do
Member

Re: All at sea here

Just a thought here but with me the operation always makes me grey - I dyed by hair 4 days before opp and the grey roots were really bright when I first washed my hair 5 days after opp! I was told its the bodyshock - so I think it will be individual thing to when we dye.

Good luck all.

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Re: All at sea here

Hey contrary mary
MY BCN said that any breast surgery gave you the baby blues.
It certainly did! Day 4, i cried all day then it was over.
Strange but it seems to upset your hormones.

Just thought id nip in and mention it as i was soooo glad the nurse told me otherwise i would hsve thought i was loosing the plot.

good luck

contrarymary
Member

Re: All at sea here

That's very interesting, Daisydo - I'm going to CX too. I hadn't been told about an appt in nuclear medicine, and maybe I'm still not having that.

Did you take a bag in with you, knowing you'd need to tote the trains around, or did the hospital provide? I'm wondering if I should take a spare bag in with my so I've got something to use, as I won't know if they're doing drains until I come round from surgery, I suspect!

I have had a nuclear injection for a PET scan, but not aware that they're planning to do one for me.

Even when you think you've got all the information you need, there are still gaps, aren't there?

Hope your recovery is going well. I've got lozenges with manuka honey in them for after surgery.

I was warned by a friend of mine who is a veteran of several general anaesthetics that it can make you feel depressed. Not sure what I can do apart from making sure I've got plenty of visitors lined up...

Daisy_do
Member

Re: All at sea here

Hi all I have just come out of hospital having had mastectomy and sentinel node biopsy.

The reason I went to hospital (day app) was to have the nuclear injection and images done - it takes ages and the procedure is painless. They inject into the breast by the nipple (my breast was in a mess from previous WLE and infection) or anywhere they can get near. The injection doesnt hurt at all (v.small needle) and they said that the nuclear stuff may sting but I didnt feel much just warmth then you lay there and wait for the machine to do the thing for about 30 mins. The next day I went in to hospital early for operation and they then put the dye in for SN. I had mastectomy and two nodes removed and two drains. The drains do not bug you only that you need to take a small back to carry them in so you can walk around and go to the loo etc.

I had the operation on Friday 5th June and the first drain came out on Sunday and then the other (when it came down to just 10ml per day)came out on Monday and I went home. This is not uncommon apparently but I did go to a very good NHS hospital (Char. X) I wasn't prepared for the tickly cough I developed and had for 3 days.

There are people that go home with drains in but the district nurse visits daily and can take them out I have heard.

Good luck all and the very best for health. x

smelltheroses
Member

Re: All at sea here

Hi contrarymary, I really just want the surgery to be over now. I am glad I finished work yesterday as I realise I am getting quite stressed over things that I would normally cope with. I too will be tidying this weekend. I have been told that I will probably stay in just one night and think will be sent home with drains. I was told at my pre op that if I had just been having the wle I would be a day case! I go for my injection in nuclear medicine on Tuesday and need to be at the ward at 7.00. Have a good weekend x

contrarymary
Member

Re: All at sea here

I've been told that I need to come in even earlier than I thought I'd have to on the day before surgery. They've got to do something (probably for the sentinel node biopsy) 24 hours before the operation.

I'm amazed at how little information about what's going on is available between the people on the surgery side and the people on the oncology side! So now I've got 4 appointments and ward admission to look forward to. Oh joy.

Elaine, my hospital has told me they will definitely not discharge me with drains in, I've been told this on a number of occasions now so I'll have to work on that assumption. Who knows, though, they may change their mind. I don't even know yet if they'll even put a drain in. I have to say if there's a potential for it being in 5 days, I'd rather not spend those 5 days in hospital! There are so many unknown factors about all of this. Thanks for the good luck wishes :-))

Smelltheroses - getting stuff ready for hospital is organised, I'll admit - but it's about the only thing that is! I have a massive amount of tidying up to do (on the basis that for a while aftewards I may not have the strength or mobility to do it). This weekend will be tidying, dyeing hair (I shudder to think what colour it is if I didn't), and getting to grips with my new mobile phone (the old one's on the blink, and I've been relying on it to keep friends and family up to date with what's going on). At present I'm still feeling pretty calm. I think I will have a sleepless night on Monday though. How about you?

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Re: All at sea here

Hi Contrarymary,
I had a WLE with axillary clearance in April. I had a drain in, was sent home with it in situ. District nurse came and checked it each day then took it out on day 5 with no problems.
Best of luck.
Elaine.xx

smelltheroses
Member

Re: All at sea here

Hi contrarymary, just wondering how you are feeling as (our) op date gets closer. You are well organised packing, not at that stage yet.

contrarymary
Member

Re: All at sea here

Asked today (BCN) why no TM discussed with my WLE - it sounds as if the amount they're going to be taking out is too small for it.

I've decided one of the reasons I was getting so ratty towards the end of last week was all the things I didn't ask about. There's some stuff I've decided I really don't want to know about, but everything else I'm trying to find out about.

Getting to the hospital was a huge nightmare. Just hope that there isn't another tube strike next week or it's going to be a pretty miserable, visitor-less time I'll be having.

I've actually started packing all my bits for my stay. I've never had to pack for hospital, so have no idea if I'm over-egging it, or not. If I need drains, they're not going to be letting me go home with them still in.

contrarymary
Member

Re: All at sea here

If you're looking for button-up pjs - they've got a good selection at Tescos at present.

I'm currently scratching my head about a straightforward way to get to the hospital for an appointment tomorrow. What's normally a quick and easy tube journey suddenly turns into a challenging event involving a lot more walking, and several buses.

I'm going to ask my bcn about the mammoplasty tomorrow - assuming she is able to make it into work. Loads of people appear to be going to working from home. Not sure how feasible that is for those in healthcare though.

Mumszy - curious about the injection - is that how they're guiding your surgery then? Sounds different to what I'm having. Of course, we're all different, so I'm sure even how they go about surgery is going to vary (even if a scalpel is involved every time!).

Good luck with your preparations.

smelltheroses
Member

Re: All at sea here

Hi Contrarymary,

Good to know someone going under the knife at the same time as me! I was initially down for wle and snb but when I started googling, I found out about therapuetic mammoplasty...... I have plenty to spare so asked the bcn about it when she visited me at home. The surgeon had no problem doing it but my surgery date had to be put back a little. I will ask the bcn about suitable bras/support.

Thanks for your advice, I need to get to the shops!!

I go for my injection at the nuclear medicine dept on 16th and op is on 17th. x

contrarymary
Member

Re: All at sea here

Hi Smelltheroses

I've had some great tips on what to think of/take in with me from people here, from a dear friend who has had surgery, and from one of the volunteers at the Maggies centre at Charing Cross.
So far I've got: ear plugs and an eye mask, aromatherapy oils to make myself feel more at home (I love lavender, and marjoram is great for sleep); books to read; pyjamas and a button-up the front nightshirt; wet-wipes; antibacterial hand spray; a fan (because it's so hot on the wards); oatcakes incase things are bunged up post-surgery.
I'm going to get some sweets for the post air-pipe down throat soreness - even the anaesthetist recommended it.
I'm going to make sure I've to something comfy to get dressed into, so I don't have to be in my nightware.
The only thing I'm hazy on at present is bras. I'm toting around 32H boobs, and cannot imagine not having support on them. I've not been offered a mammoplasty, which suggests to me that the WLE I'll be having won't be taking much volume, but I'm going to ask the question, as it hadn't occurred to me that it might be available. Perhaps they are going to wait to see if I've got clear margins before we have that conversation...

Your op is the same date as mine! I just noticed. I go in on 16th, and I think that's when they're going to put in the guide wire for the surgery on 17th (WLE and SNB). I've not seen my surgeon yet - won't do until 15th. It's weird, but I've seen loads of the oncology side because I'm taking part in a clinical trial, but haven't been back to the surgical side since I got my diagnosis.

smelltheroses
Member

Re: All at sea here

Hello Contrarymary,

Been reading your posts and you seem to be at about the same stage as me. I am having wle and snb, my surgeon agreed to perform therapeutic mammoplasty which also includes a breast reduction. I have my op on 17th. I have great confidence in the team at the hospital and have been given good support and information from the surgeon and bcn. I have been putting it all to the back of my mind but it is becoming a bit more of a reality now. I still feel lucky that I was diagnosed at an early stage through routine mammogram. I need to start thinking about the practicalities like night attire and drinks and sweets! I find myself devoting a lot of time to reading posts on this site. The women who post here are amazing and such a support to each other. I find the posts quite emotional and often have a bit of a cry but I think that is good as I am definitely keeping a stiff upper lip at work and with friends and family. I hope that soon I will be able to encourage others..... for now I need the support that these posts bring, even if not personal to me!!!! Keep going, it will soon be over. I will be thinking of you.

contrarymary
Member

Re: All at sea here

Thanks Mumszy

I ended up feeling grumpy Friday as well, but then just exhausted yesterday. Went round the shops, but couldn't face trying stuff on (comfort shopping was my intention) so headed home and fell into bed for a snooze.

Will get myself some bottled water, and some juice to disguise the taste of hospital water. Tepid water doesn't bother me, I don't think, but if the actual flavour of it is vile, that really would bother me a lot.

I'm wondering how big a bag of stuff I need to take in with me to hospital. I bought some new nightware to cheer me up, but I was warned that if anything leaks I'll need plenty of changes of stuff so I'm not sitting in stained stuff (can't be great for morale). So I'm now thinking in terms of cheapie stuff (supermarket or primark I suppose).
I was told originally that they won't send me home with drains in, but I'm going to double-check on that. Frankly, despite all the efforts they make at hospitals, I'd rather not be there longer than absolutely necessary.

There's so much stuff I've still not organised. I'm trying not to panic about it, but I dare say by the end of this week I'll be more than fretting...

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Re: All at sea here

Hi Contrarymary -
Hope you are feeling better, just been reading your thread. I have days when I feel normal and forget about it all and others when I just want to weep!! I had MX 29th April with whole node clearance, it wasnt too bad and was in hospital for 4 nights and sent home with a drain. I had PCA (patient controlled analgesia) a button that I pressed which gave me a shot of delicious nectar that soothed the pain away. They are great at keeping you comfy, take some sucky sweets (I took fruit gums) as your throat will be sore and something nice to sip (as someone else said the water is disgusting!!) Just go with the flow, dont fight it, and remember we are all here to help each other get through this difficult journey in the smoothest way possible. Chin-up Honey!

contrarymary
Member

Re: All at sea here

Having a bad day today - feeling out of sorts with the world! Everything is annoying me, even the most trivial. I've been so very grumpy. I suppose this is anger at my diagnosis coming out. I'm not shouting and screaming, at least not on the outside.

Mostly I have no problem being positive, but just at the moment the glass feels half empty rather than half full.

Hate feeling like this, so hope a good night's sleep will wake me up in a more positive frame of mind.

contrarymary
Member

Re: All at sea here

Thanks Daisy.

I am endlessly impressed with how patient and caring everyone I have come across is at the hospital, whether dealing with cancer patients or any other patients.

I'm hoping various meetings I've got today don't get in the way or me having a good walk. I feel I need it!

I've popped into the Maggies Centre at CX Hosp - how fantastic it is to have such a facility you can just stagger into before, between, or after appointments.

Next week is my last week in work before I go off for my operation, so I imagine that by the end of next week I will have no powers of concentration left.

Daisy_do
Member

Re: All at sea here

Nice to see that you are taking positive steps to feel better - they do work. I went through all the panics, how much to tell the kids, pacing the floor at 4am, listening to the birds tweeting etc. It gets better the more your working towards the solution. Give yourself time to get used to all the strange info and learning your doing.
I too am with Charing Cross and have DCIS and had WLE no clear margins and now await mastectomy/sentinel node on Friday. Please have confidence in the team at CC as I went today (pre op last Friday) and discussed all with them in a relaxed but professional way. The registrar is fully understanding of what we want to know and has unlimited time to answer all questions. You probably have the breast care nurse bleep and I have used this on many occasion and she will ring you back and answer any queries for you.
Mobile phones are allowed although they worry about the sound bugging others so the nurses will turn a blind eye as long as they are not intrusive - on silent and no shouting. I used mine a lot last time because sons want to know your ok every 5mins (they are adults).
The doctor also gave me hints and tips of what to expect, wear, feel etc., and encouraging of doing the right thing and Thursday I will go for the nuclear injection and pictures.
I am very positive about the team at CC and that I am in control of the BC and my life and how I live it not the other way around.
My son offered to put me through BUPA but it would be the same doctors anyway! I told him I may use it in the future but to wait.
Dont forget to breathe...your entitled to feel what you want and when you want - especially happy and proud that your going through this taking positive steps.
The anaesthetist know what they are doing and will see you are prescribed anti sickness for after operation as well as painkillers so if you are in pain tell them, sick tell them or grateful to them tell them. The only thing is the water they give you is awful tap water and warm so please take your own drinks in!
God bless and have faith - we CAN do this. x

contrarymary
Member

Re: All at sea here

One more step closer to surgery today - had my pre-surgery assessment.
Still wishing I could have the op under a local anasthetic, but the anesthetist who spoke to me was very reassuring about it.

Op in a bit over 2 weeks time.

Meanwhile I've been upping the exercise - going for a brisk walk (30mins + 4 or 5 times a week), and I've got a hypnotherapy CD which I'm finding very relaxing to listen to. I'm not sure if I'm actually being hypnotised, but if it's relaxing me, I don't really care!

I keep being told I'm very healthy. How ironic!

contrarymary
Member

Re: All at sea here

Thank you for that link Kate! It looks very clear and straightforward.

I'll get onto my doctor's surgery about the exemption then.

The explanation in the pre-surgery literature was focused on the high-dependency phase of being on a ward. That is one of the things I want to ask about at the pre-admission clinic (or ask when I have a slot with the registrar or consultant).

One book I've invested in, which has helped calm me down about what to expect of the whole experience is The Breast Cancer Book - recommended in quite a lot of literature I've seen. Anyone else read it?

c~m~

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Re: All at sea here

Dear Contrarymary

Here is a link to current information on prescription charges on the BCC website, which I hope will be useful:

http://www.breastcancercare.org.uk/server/show/nav.558

Kind Regards,
Kate
Facilitator

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Re: All at sea here

Mary - my pre-admission literature all said no mobiles but I was allowed to use mine. In fact the nurses encouraged it as the plumbed in phones were so expensive. Mind you, in a single room you're not disturbing anyone else.
Also, the prescription charge exemption applies to anyone undergoing treatment for cancer. You just have to ask for the form at your GP's surgery, fill in your bit, then get them to fill in their's and post it off. You then should get a plastic card in the post a couple of weeks later. I think you can claim back any charges incurred in the meantime, but you surgery or bcn will be able to advise on that.

Phili x

contrarymary
Member

Re: All at sea here

Your NHS trust sounds very nice, Philidel!

Think I'll be on a ward - and no mobile phones, sadly 😞

I'm going to have to get a contact network organised so they're not all ringing the hospital... It's all much trickier when you don't have an other half to do the liaising for you, and I don't want to land it all on one single friend.

Only clinic which seems to run late on a regular basis is imaging. Clearly they don't have sufficient facilities to cater to all the demand from out/ and in/patients. I marval at how patient and helpful they are considering the sheer volume of people and the number of questions they get asked that they can't help with.

I've not been to the GP just yet - but I think I'll have to to get this exemption certificate so I don't have to pay for medication (there was a notice in the hospital pharmacy that cancer meds and meds to deal with side-effects were free from April this year). It didn't say if that was applicable to everyone, or only if you meet certain criteria, but I'm guessing if not, I need one of those pre-payment thingies or it could get expensive.

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Re: All at sea here

I just thought I'd quickly post on the private/NHS thing...
I went through NHS and (apart from a couple of clinics running very late) everything has been so speedy, from initial diagnosis, through op, to treatment. And I had a single en-suite room while I was in hospital at no extra cost. It's normal service at my NHS trust. Can't get much better than that!

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Re: All at sea here

Ah - the paranoia! We're all familiar with that one. Every twinge, every bump... And what we tend to forget is that we can still get ordinary things like colds! I don't think that will ever go away, but the upside to it is that we have full licence to trot down to the GP every time and have it checked out.

contrarymary
Member

Re: All at sea here

I will contact BUPA, but bizarrely, I'm quite comfortable with the speed of things via NHS. The fact they weren't rushing me in for surgery actually made me feel better about the diagnosis. At the moment I'm being scanned to death anyway, so if anything does seem to be moving faster than they first thought, I'm confident I'd move up the list.

I also do like the fact I've had the time to come to terms with my diagnosis and do some planning (mentally and physically) rather than do stuff in a rush.

Thanks for the insight into the difference in treatment, Flora - that's definitely useful food for thought 🙂

Had a bit of a wobble this morning, though - I'm getting paranoid about every ache or bumpy area in my body. BCN is brill - I asked her about my armpit (thought it felt 'different' but she had access to my ultrasound which mercifully included the armpit). Nice to be able to get not just comforting words alone, but backed up by seeing whether anything looks abnormal or not. Obviously they won't know entirely until after the WLE/SNB.

c~m~

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Re: All at sea here

Hi

Here is my perspective on BUPA.

I was lucky enough to have BUPA cover through work but did not use it for first appointment. Only switched after diagnosis. Had surgery quicker as a result and just as well as had aggressive cancer. Had mastectomy and node clearance followed by chem and radiotherapy. Access to better scans.

The surgeon and oncologist were the same as on NHS but always see them and not anyone else. The appointments are usually late afternoon or into evening so no need for time off work. I liked having own room after surgery and for chemo treatment, no waiting in queues but less chance to meet others and not such a close link with BCN. Might not suit you though. Food for thought! If you need any further info. happy to provide.

Wish you luck in whatever you decide.

Flora x

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Re: All at sea here

Good point SusanneA!

Contrarymary - have you contacted BUPA yet? I was in the same position as you (WLE /sentinal node biopsy) Would have had to wait a few weeks on the NHS but was fortunate enough to have BUPA cover. I was able to access the same team that would have treated me on the NHS but within a week of diagnosis rather than having to wait.

Wishing you the very best of luck. It does get easier.. I promise!

E x

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Re: All at sea here

Absence of terror at this point could possibly be considered completely abnormal! However, it really isn't so bad - remember, the vast majority of us are going to survive this thing, a little battered and lopsided, but stronger than ever.

contrarymary
Member

Re: All at sea here

Not really sure even after reading about the BUPA cover what it actually entails. I've got to give them a ring anyway, I suppose, even though I don't currently want to use any services.

I can't believe how disruptive all the hospital appointments are! Since I went for my tests and diagnosis (which were all done using holiday), I've 'lost' a further 2 and two-thirds days having various scans and tests done. I've had my pre-surgery appointment through, and a surgery date (which they have to change). Reading the stuff about surgery has actually scared me more even than my diagnosis of BC. Is that usual?

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Re: All at sea here

Hhhmmn - what kind of BUPA cover do you have? For me it was no contest because I'd have had to have the most gold plated sort to afford consultants of the calibre I have on the NHS. But if I could have gone somewhere like the Harley Street Clinic, I might have - sometimes the waits at my hospital are very long and are tricky to schedule in with working and the Harley Street Clinic is very well-organised, with good breast care nurses etc. And in practice, even if you change jobs, your private consultant will be able to move you onto his or her NHS list.

Do you like the team at Charing Cross? And have you seen any more of your surgeon and oncologist? I think it is worth searching out people you like because you'll be settling into a long relationship with them. Perhaps you could use BUPA for a second opinion - I suppose I'm a bit surprised you've seen so little of your doctors although there are occasional glitches at even the best hospitals and you seem to have a good feeling about yours.

contrarymary
Member

Re: All at sea here

That's really good to know, thanks, Poddle.

I'm trying to keep everything as 'normal' as possible. And trying not to look too far ahead (tried that to start with, but it really messed with my head). Had a whole load of stuff at the hosp today (I'm joining a phase 2 trial while I wait for my surgery date), but then about 5 mins with consultant. Very frustrating. So going back tomorrow to see him for longer.

I'm also not sure what to do about the fact I get BUPA through work. I don't want to use it if it may mean changing hospital or the team I currently expect will be treating me. I know it's very lucky to have the luxury of worrying about something like that - but presumably others have found themselves in this situation with that dilemma?

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Re: All at sea here

I had my operation on December 19th 2007, got out on Christmas Eve and started work again in mid January although as I'm freelance I was able to stagger it. Work was one of the things I was most worried about when I was diagnosed but all my employers were really good - esp as I had a few hiccups with the hormonal treatment when I started (I didn't have chemotherapy).

Champagne (lots of it) sounds like a very good idea (my wine-lubricated approach was endorsed by my BCN "feel free to drink quit a lot this Christmas"). I hope you have a good birthday.

contrarymary
Member

Re: All at sea here

Thanks so much.

I started thinking of all the things I now shouldn't be doing, then I thought - what the heck. I still had this blooming thing before I was diagnosed - so it can't suddenly be off-limits. So much is going to become off-limits once I start chemo and have surgery anyway, so I'm going to live for the moment, and try not to feel any guilt (easier said than done).

I've been using bio-oil on my boobs for over a year now - I've got plenty off them which at the mo is something to be grateful for, as initially at least I'll be having a WLE (now I know what the abbreviations and jargon mean), and I'm a slave to lavender oil and lavender oil-based products to relax.

For me it's about 4am. stomach in a tight knot, which doesn't do my digestive system any favours. Oh, and major premenstrual symptoms. A really rubbish combination. Rennies are my friend!

Retail therapy sounds like a good idea. Need to replace my laptop, and if I can get to grips with MP3 players at the same time, that would be all to the good.

Tomorrow's my birthday - so I'm going out for a meal with friends, and I'll be drinking champagne. Could be the last for a while...

Poddle - hope the trip to the US for work goes well for you on all fronts. How soon after treatment did you go back to work?