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Anybody between exeter, newton abbot and plymouth?

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Genevre
Member

Re: Anybody between exeter, newton abbot and plymouth?

Hello Netty, I'm in Exeter, just had FEC 5 at RDE. Would love to meet up sometime.  Hope you're bearing up, what a medical marathon we're going through!  Best wishes, Fraan

 

Netty_E
Member

Re: Anybody between exeter, newton abbot and plymouth?

Hi foxyFerret
1 week after first chemo treatment, and i don't feel quite so tired today. Means i might actually get some work done today!
Hair is tingling to so wondering if that is the sign that its getting ready to go!
SE's have passed for the moment, just in time to enjoy the weekend with hubby xx
hope everyone is ok xx
Netty xxx
foxyferret
Member

Re: Anybody between exeter, newton abbot and plymouth?

Hi Girls

Been quite a while since anyone posted. I do hope that you are all getting on ok and that your SE's are small ones.
Hope that those of you attending the same hospital are staying in touch, if not on here.
I do think of you all and wish you well. I am lucky enough to be NEDdy at the moment and hope you all join me there as soon as possible.

Best wishes
FF
Pammyx
Member

Re: Anybody between exeter, newton abbot and plymouth?

I live in manchestjus just outside stockport we do appear to be in the minority although I was born in the south west
Assisi
Member

Re: Anybody between exeter, newton abbot and plymouth?

Why does there not seem to be any members from the North West area you all seem to be from the South of england are there any ladies from just outside Manchester who would like a chat?
Sooz
Member

Re: Anybody between exeter, newton abbot and plymouth?

Day 1 of Chemo was actually OK, picc line went in with no problems, get a little sting for about 5 seconds and thats it. Then off for chest X-ray to make sure its in the correct place.
One of the drugs in the FEC100 is RED, and turns your urine red, quite a shock when you go to toilet, doesnt last long though.
Been given an injection to give MYSELF, 24hrs after the chemo, to help promote the white cells, I am so bad with needles, I can't do it, so was lucky to get a quick appointment with GP nurse booked.
Day 2 Again feeling fine! woke early hours with a blinding headache, then went back to sleep, but overall, so far so good!
ONE DOWN 5 TO GO!!
(I like the description that someone else wrote "its like the PACMAN game, running around your body 'munching' and clearing up all the little baddies)
xxxx
Netty_E
Member

Re: Anybody between exeter, newton abbot and plymouth?

Hey
Sooz - how did the chemo session go??
i've been asked if i want to be involved in herceptin trial... giving it serious thought as its administered quicker than normally.
i have my wig appointment next and my pre-chemo blood tests, so 'treatment life' is ramping up again after the calm down after the op. How well roll on september when chemo should be over!!

xx
Sooz
Member

Re: Anybody between exeter, newton abbot and plymouth?

Hi all
Cant believe its been a month since last post! Im not gonna say thats cos time flys when...... because its hardly been fun. I know where you're coming from Netty, I think it gets to us all at some point, good to hear thats behind you now.
Well, I was told I needed to have a Lymph node clearance operation. I already had 4 removed when i had the mastectomy and 1 of the 4 was infected, therefore a slim chance further nodes could be infected.
Dont know if you all remember I was offered the opportunity to join a trial currently running called OPTIMA, basically its a test on the tissues (tumours) they removed - (coz theres none left in me now right??!!!!!!!) to see how the Chemo reacts to it, apparently research shows that not all tumours will have any benefit, so some women could go through having Chemo (Standard treatment given) unneccessarily, but this test is very expensive, its available in USA and here in the UK if you can afford it, but not on the NHS yet.
Anyway I was told that to continue with the trial I needed to have the node operation. I looked into this and once again there was doubt that this operation made a real difference and there was an element of uncertainty to it, with (in my opinion) high risks of suffering lifetime after-effects, i.e. lymphodema, cellulitis, (a risk I wasnt willing to take as I do a lot of sporting activity) had a long discussion with the consultation/sugeon and its was agreed that I may be better off not having it done. So I went back to the Research Nurse to tell her, and too my surprise she tells me I can still go ahead with the trial without the OP, I was delighted!
Been waiting and waiting for results to return, was told yesterday they have returned and I am in the Group that will need the Chemo! so blood taken yesterday, and chemo starts tomorrow 6 x FEC100.
Today I had an appointment with 'FORCE' in exeter to see the WIG specialist to select and get fitted with a wig - SO SURREAL, just seems crazy. Got one, so thats all sorted now.
Just for info......... At the pre-chemo appointment I asked about the 100 (FEC100) does that mean its a high dose? I was told no, it relates to size/height that you are. (I am 5' 11')
So here goes, tomorrow PICC line being installed and first dose of FEC100, I am a little scared.
Hope all is going as best as it can for the rest of you.
Sooz x
Netty_E
Member

Re: Anybody between exeter, newton abbot and plymouth?

Hi all
sorry its been a while, have not been in a good place. But back driving and my only limitation is my husband stopping me from driving to far just in case its to much!
back to work but at home part of the week so life is getting on nicely. Well until i developed a cough and pulled my back muscles from coughing so much.... saw GP in the end, so have antibiotics to clear cough. Have also had a chest x ray and got to go back for a CT scan to make sure it is just a cough. drama drama drama! lol
The long and short of it is that i am now back in a far more positive place, i've met with oncologist, and i start chemo on 24th May. I'm having 3 lots of FEC and then 3 lots of T with Herceptin. I said no to cold cap and i am now ready to take this blasted thing on!!!! woohoo!!!!!
i hope you are all doing well .... and feeling in a good place
Netty
Twinnumber1
Member

Re: Anybody between exeter, newton abbot and plymouth?

Hi Margaret
I posted last night, successfully, but when I got back from hospital at lunchtime after chemo3, the post had disappeared! Grrrrr.
i'm glad the Pilates is helping. As for getting your range of movement back, I only had a WLE so can't help. I hope it doesn't take too long for you.
Netty & Sooz - how are you both. Have you had dates set to start your chemo? it woud be good to hear how you are both getting on. Netty, I did reply to your message about the LGFB session, I hope you received it ok?
Jess xxx
sdfmeg
Member

Re: Anybody between exeter, newton abbot and plymouth?

Hi everyone,

hope you are all keeping well and managing OK on the chemo.I have only just started driving, and can cope with ten miles each way but think any more would be pushing it. The Pilates is helping. I've had two lessons so far, with the first one being an assessment. Apparently, I have been overdoing th exercises. Apparently, you just go until you can feel the tug, breathe out whilst relaxing and then breathe in pushing it all a tiny bit further. Last Weekend, everything seemed to tighten up again, but I now feel as though I am winning again. Goodness knows when I will be able to regain the movement I had six weeks ago.... At least it's not working out too expensive, as I only see her envy other week and have managed to find somewhere free to park (not possiblin on hospital visits).

Off to get my prosthesis next week. Not sure if I'm pleased about this or not.

Netty_E
Member

Re: Anybody between exeter, newton abbot and plymouth?

Hi all,
The LGFB session was good and i was amazed at the goodies you got - really not what i was expecting! it was nice to meet other ladies, and there was mix of ladies at different stages of treatment.
like you sooz i'm nervous about the chemo too. i'm still waiting for my oncology appointment to come through.
Twinnumber1 - i've PM' you - did u get it?
sdfmeg - i think the leaflet is maybe to basic, but i guess they have to start some where. i'm going back to an exercise class next week so i'm hoping that will help. Driving has also helped get some of my ROM back.
A diary of symptoms sounds like a plan. I've been keeping a general diary about my experiences so far - found it quite cathartic to write down how i feel etc.
xx
sdfmeg
Member

Re: Anybody between exeter, newton abbot and plymouth?

Hi everyone,

Thanks for making me feel welcome.

Netty - I spoke to my BCN a couple of weeks after my Mx. She offered to send me the exercise leaflet, but then said it was the BCC one (which I had already printed from the website).

Sooz - how long did it take you to regain full ROM? Mine is getting better, but still nowhere near as good as it was a month ago. And it hurts.
I had my chemo first. Should have been 4 FEC100, 4T. I think FEC 100 is the strongest one, and they may reduce it to FEC 75 or 50 if they need to. I had three FEC and four T. It wasn't too bad, but had to stop the FEC early because it caused tinnitus. Am told this is unusual. I found it helped to keep a diary, because for me the symptoms were similar each cycle and came on around the same time. So, I got thrush during T1 but then avoided it for the other three cycles because I took meds the day before symptoms would have started. I stayed off work for the whole of chemo, but if I had had an office job I would have worked through weeks 2 and 3 each time.
I am booked onto LGFB session in Exeter on 14th May. Anyone else doing it?
Margaret xx

Twinnumber1
Member

Re: Anybody between exeter, newton abbot and plymouth?

Hi
Sooz - don't be too worried re: the chemo, it's not great but it's not impossible. Everyone suffers different side effects, some people hardly suffer any and who manage to go to work throughout their chemo. I am on TAC chemo which is different to your's - a lot of the ladies on the Spring intoChemo in March thread are on FEC 75 chemo so you might want to look at some of their posts. My side effects on the first cycle were different to the side effects Iam suffering from on this second cycle. This time my main side effects are feeling nauseous (but the anti sickness meds stop you being sick) and feeling very low/emotional. But I am already getting better so I basically write off the first week but then I am better for the last 2 weeks.
Netty - let us know how you got on yesterday at the Look Good Feel Good session.
jose & Margaret - I had a lumpectomy and SNB and just did the exercises given to me by my BCN which worked very well.
Jess x
Sooz
Member

Re: Anybody between exeter, newton abbot and plymouth?

Hi all
Twinnumber1 are you finding the chemo really awful? I am getting worried about it. My chemo is set for 6 sessions of FEC 100, not that I really know what that means, whether that's the usual, high, low or what. When you feel much better definitely re-book your LGFB session, had mine today and it was lovely, some great tips and fantastic goody bag and soooo nice to meet others.
Netty how did you find it?

Hi Jose/sdfmeg
Not much use to you i'm afraid, I had mx with reconstruction and lymphnodes removed, after op I had visit from physiotherapist (whilst in hospital recovering) giving me instructions on exercises and a booklet to take away. Movement at first very tight/limited but everyday got slightly easier, I kept the arm moving as much as I could. Definitely speak to your BCN they will help you answer your concerns.

Sooz xxx
Netty_E
Member

Re: Anybody between exeter, newton abbot and plymouth?

hey Jose & sdfmeg,
i got a leaflet from the hospital about exercises, i've adapted them slightly as i found that the muscles above my elbow were tight and the exercises didn't stretch that part.
i'm back driving, but then i didn't have mx. just lumpectomy and ANC.
i hope the pilates helps sdfmeg, Jose - have you asked your BCN for advice regarding exercises?
Netty xx
sdfmeg
Member

Re: Anybody between exeter, newton abbot and plymouth?

Hello ladies, I have been lurking here as live at the opposite side of Devon (but don't know anyone with BC locally). Had Mx and ANC 11th March, and struggling to regain range of movement. I don't know which exercises you were given Jose, but I wasn't given any so all the information I have came from Google. I did find I didn't get on with some of the exercise leaflets I found and have ended up doing the ones on the Haven's Preventing Lymphoedema DVD (which they will post free of charge). They are gentler, and the nurse practitioner explains why you do each of them and says only to do what is comfortable for you. I have found that my ROM is improving, albeit very slowly. You will also find that gentle walking and opening and closing your hands helps, since the lymphatic system has no pump and relies on the movement of your muscles to keep going. On Friday, I am going to see a Pilates teacher who does rehabilitation work and hoping she will be able to help. It's expensive, but the hospital where I had my surgery is over 100 miles away so it works out cheaper than going back to see their physio. Good luck with your exercises. Hugs. Margaret

Jose
Member

Re: Anybody between exeter, newton abbot and plymouth?

Hi all you ladies out there I had ms and full ax clearance on 6 march I've not been able to do the exercise because warfarine causes more bruising and swelling every time I try .has anyone else had this problem? I also have other health issues which complicates everything ,surly there must be others like me.
thanks for listening
jose xpXGM
Netty_E
Member

Re: Anybody between exeter, newton abbot and plymouth?

hi twinnumber1 - good to hear from u. but i am sorry to hear that your feeling so lousy!! i'll let you know about the session!! they phoned to ask me my skin tone!!
i hope you feel better soon!
hugs
Netty
Twinnumber1
Member

Re: Anybody between exeter, newton abbot and plymouth?

Hi All
Sorry I haven't posted for a while but I had chemo round number 2 on Thursday and have been feeling pretty rough since. Haven't really got out of bed in the last 4 days. If it's the same as last time, I should start to feel better in 2 or 3 days. SoNetty, I'm afraid I have just cancelled my Look Good Feel Good session tomorrow at The Mustard Tree, I'm just not up to leaving the house at the mo. I hope you have a good time on it though. It's great that you are back diving again and going to the office this week, it made all the difference to me when I got back to work - a bit of normality!
Sooz, sounds really interesting being invited to take part in the research/study - any research into seeing whether chemo isn't always necessary sounds good to me! If you do start chemo on the 26th, have they told you which chemo you will be having?
foxyferret - so very pleased for you with your scan results, absolutely brilliant news.
Gg23 - glad you and Netty have been able to meet up to be able to chat to each other because you are both going through it.
I will check how you are all getting on in the next few days - when I am feeling a little bit more human!
Jess xxx
Netty_E
Member

Re: Anybody between exeter, newton abbot and plymouth?

hi Sooz
study sounds interesting!!! i wonder if you'll get selected!! could make for an interesting blog or something!!
how do u feel about your treatment plan? and the whole 'all' lymph ndoes removed situation?

i'm still waiting for my appointment with oncology to come through. I'm back drivng though which feels like such a big step so i'll be venturing to the office for a few days this week!!

hope your having a lovely weekend
Netty x
Sooz
Member

Re: Anybody between exeter, newton abbot and plymouth?

Foxyferret what a massive relief, so pleased for you.
Oncology appointment was very interesting, bone scan all okay (phew) ct still to look at. I need the following treatment:
Chemo first, then operation to remove ALL lymph nodes, then radio and hormonal therapy (tamoxifen)
BUT and this is the interesting bit, I have been invited to take part in a research study/trial as my case fits all the attributes. The trial is basically looking into the 'standard' treatment given I.e. Chemo/radio/hormonal, looking at not giving chemo (as this maynot always be beneficial to some people therefore reducing the unnecessary treatment and cost). It's aimed at women who's tumors are oestrogen positive, HER negative, have not yet had chemo. A test needs to be done on my tissues already removed first. There is a lot more involved to it but have outlined it briefly. It's called OPTIMA.
My chemo is set to start 26th April nevertheless.
So right now it's like a carrot dangling in front of me. I may get selected, I may not. The docs/consultants etc don't get to decide its randomly selected by computer.
Twinnumber1 let us know how your getting on.
Best wishes to you all
Sooz
Netty_E
Member

Re: Anybody between exeter, newton abbot and plymouth?

Hey foxyferret...... great news about your mammogram!! u must be so relieved! but hey lets have no more talk about not posting because you feel guilty! no more!!
how you doing twinnumber1? you still going on tuesday? how have the se's been this time around?
sooz - how did it go on thursday?
i thoroughly enjoyed meeting up with gg123, it was good for the soul i think - i cam back feeling a lot less grumpy!

i drove today, i decided it was time to at least try. Arm is still a bit stiff but as hubby is away from tues i could realy do with being mobile. Between the driving and going back to work this week i feel a bit better!! i'm going to go back to the office next week for a couple of days so that'll feel like another bit of normality. i wonder if i can add in a exercise class!! work off some of the naughty food i've not been denying myself while i've been recuperating!!

hope you are all ok and i wish you all a good weekend
Netty x
foxyferret
Member

Re: Anybody between exeter, newton abbot and plymouth?

Hi girls,
Sorry I've not replied before, especially as some of you have not received good news. Netty, so sorry your results were not good. I hope that once you have your treatment plan in place you will feel better.
Sooz - hope your scans are ok. I, too, had a cancel a cruise to St Petersburg, because the treatment came first. Maybe next year! Have you found the FORCE centre at the RD&E? They can give you all kinds of support and free complimentary therapies.
Twinnumber1 - hope your second round of chemo goes ok and the se's are few.
gg123 - thank goodness you went back to your appts. So glad you managed to meet up with Netty, talking to someone else going through this ***awful time is invaluable.

My mammogram results finally arrived (took three weeks) and showed " nothing of concern". The relief was incredible. This was another reason for not posting as I feel guilty for being ok, while you are all still undergoing treatment. BUT next year you will all be where I am (fingers crossed) in the land of NED (No Evidence of Disease).

Thinking of you all and wishing you well.
gg123
Member

Re: Anybody between exeter, newton abbot and plymouth?

glad your mamogram results were clear. it is nice to hear the good news along with the bad, i would want to shout it to the world. xx
gg123
Member

Re: Anybody between exeter, newton abbot and plymouth?

met the lovely netty for coffee. had a lovely chat with someone else who understands what we are going through
Sooz
Member

Re: Anybody between exeter, newton abbot and plymouth?

Hi gg123 - what a good job you went back to your appointments!! And sorry to hear the outcome. I was given the option of immediate recon but told it best wait until treatment (radio at least) had been done as this could have an effect on the recon result with hardening and shrinkage. I researched this and also listened to my PS and basically it is NOT absolutely sure whether the radiotherapy would do this. So I took the gamble and had immediate recon knowing I may need RT (find out on Thursday) operations scare me so having the lot done in one go is a risk I am willing to take. If it spoils the affect and further surgery is needed to correct this, then it will be 2 ops-which is what I would be having anyway if I went for delayed.
Can you see the method in my madness?
Don't let me sway you in this important decision - but I will keep you posted if I have RT and how it goes.
Netty - that is really strange why the scans are done differently, I may ask about that when I get mine done.
What a good job you went away at Xmas! I'm a great believer in things happen for a reason.
Sorry Netty the Woman's V Cancer event was yesterday (Sunday). I always post so late that I don't realise I'm into the next day.
Best of wishes to you both and have a lovely Easter Monday.
Sooz x
Netty_E
Member

Re: Anybody between exeter, newton abbot and plymouth?

Hi Sooz
isn't it strange - the hospitals all seem to work differently as i had my bone, CT and MRI all done before anything else was done.
i'm oestrogen postive and all herceptin positve.... do i get bingo for being both lol
Good luck for thursday and keep us posted (if you happy to). I haven't seen my hubby cry since day we got the intial confirmation but i know he's struggling just as much - i think its the helplessness of it all - they can't make it go away. My wider family were told today by my mum, its taken awhile for her to get her head around it so it was only now she felt she could tell them.
shame about your holiday. We would have been in a similar situation - we were planning to have our honeymoon during the easter break but my hubbies boss veto'd that and said he'd prefer hubby took time at xmas, so thats when we went - just as well as we'd not be going if it was this week!!! jsut think of how very deserved it will be when you all get away after all this.
Funnily enough we were on about going to exeter bank hol monday, so we may just do so now....
take care & bye for now
Netty x
Netty_E
Member

Re: Anybody between exeter, newton abbot and plymouth?

Hi gg123
i've messaged you ... or at least i've accepted your friend request and added a message at the end of that!
i share your concerns regarding having nothing left.. i didn't get mine unitl i was about 22!! so i'm reluctant to let them go!!
how have the last few days been?

hugs
Netty x
gg123
Member

Re: Anybody between exeter, newton abbot and plymouth?

hi,
Guess its time to tell you my story. I went to the gp back in february as I wanted to be referred back to the hospital as i had previously had appointment yearly as there is a family history, i had relalised that i hadnt been seen since 2010 and wanted to get back to my ppointments. I had no symptons or reasons for concern apart ffrom the family link. i was seen back in february and the dr said she was concerned because my nipple was slighly changed and she said that it was a sign of cancer. I had an ultra sound and they couldn;t see anything then a biopsy. afetr a week i was called back and told that i had cancer, after that I have had an lymph node biospy, mamogram and MRI. My lymph nodes are infected and I will have them all removed as part of my surgery. In addition to that my cancer is believed to be around 55mm and that there is a second oe around 25mm. I have been offered a mastectomy due to the factthat there is a family history and there are 2 lumps. I have an appointment with Plastic on 15 april to discuss reconstrutionoptions. Ideally i would like imediate reconstruction but am aware that may not e possible to to treatment sfter. I hav equite large breasts and and concerned about having nothing at all. I have to have my contraception implant removed becuase it is an oestrogen receptor, as i will be put on tamoxifen in the future.
gg123
Member

Re: Anybody between exeter, newton abbot and plymouth?

hi,
Guess its time to tell you mys story. I went to the gp back in february as I wanted to be referred back to the hospital as i had previously had appointment yearly as there is a family history, i had relalised that i hadnt been seen since 2010 and wanted to get back to my ppointments. I had no symptons or reasons for concern apart ffrom the family link. i was seen back in february and the dr said she was concerned because my nipple was slighly changed and she said that it was a sign of cancer. I had an ultra sound and they couldn;t see anything then a biopsy. afetr a week i was called back and told that i had cancer, after that I have had an lymph node biospy, mamogram and MRI. My lymph nodes are infected and I will have them all removed as part of my surgery. In addition to that my cancer is believed to be around 55mm and that there is a second oe around 25mm. I have been offered a mastectomy due to the factthat there is a family history and there are 2 lumps. I have an appointment with Plastic on 15 april to discuss reconstrutionoptions. Ideally i would like imediate reconstruction but am aware that may not e possible to to treatment sfter. I hav equite large breasts and and concerned about having nothing at all. I have to have my contraception implant removed becuase it is an oestrogen receptor, as i will be put on tamoxifen in the future.
Sooz
Member

Re: Anybody between exeter, newton abbot and plymouth?

Hi gg123 - hope you and Netty meet up, having someone to chat with that knows exactly what your going through has got to be a great help.
Aww Netty, ouch! Just brings it to light how vulnerable we are right now. I took my daughter to her swimming lesson last week and there were kids running around and I was so worried that one of them was going to knock into me.
Chemo/radio will be discussed at my oncology appointment on Thursday I have a CT and Bone scan to have first (Tuesday). Due to (like yourself) the lymph node showing as infected - they want to investigate further in case it's spread. I have to admit I am very frightened about attending this appointment. One things for sure I will be on hormonal therapy (tamoxifen was mentioned) due to being oestrogen+.
I am being positive but it does get all a bit difficult at times, hubby is finding it hard, I see him welling up and fighting back the tears, not wanting to upset me.
OMG - sun! What is that? Wouldn't that be nice, fed up with this lousy cold weather.
We had actually booked a holiday to Tenerife for the May school hols, consultant advised us to cancel it (cos of chemo) that upset us we were all so looking forward to getting away.
Tomorrow we are going to a charity event which a pal of mine has organised 'WOMAN v CANCER' she was diagnosed with ovarian cancer (just had the 5year clearance). Raising funds for ovarian/breast/cervical cancer. So if your in Exeter, its at the quay, come along.
Enjoy the chocolate.
Sooz x
Netty_E
Member

Re: Anybody between exeter, newton abbot and plymouth?

hi sooz
i know the feeling regarding being bored stiff! i too ventured out today for some shopping and i ended up hurting myself when trying to tuck a chair in in a cafe! doh! so i was sore by time i got home.
but it sounds like your in a relatively good place! and long may that continue!!
all we need is a bit of sun to help us on our way!
remind me - are u having chemo and radio?
hope your having a great easter weekend
Netty
Netty_E
Member

Re: Anybody between exeter, newton abbot and plymouth?

Hi gg123
i'm in ivybridge too, if you'd like to meet up and chat then please get in touch.
best wishes
Netty x
gg123
Member

Re: Anybody between exeter, newton abbot and plymouth?

hi, i live in ivybridge.I am 33 years old. I have been diagnosed with breast cancer and am awaiting surgery.
Sooz
Member

Re: Anybody between exeter, newton abbot and plymouth?

Hi Netty
Doing ok, although Im at the waiting stage right now, it's quite nice to have a breather to recover from the Op before the next onslaught of stuff!
I'm just over 3weeks post op, bruising/swelling is going down and movement around tummy is easier,skin is still very tight. Went out for some therapeutic shopping today (bored stiff, not allowed to do anything for 6weeks), really enjoyed myself but by time I got home my boob was starting to feel really sore, maybe too much movement etc tummy was fine though.
Pleased to hear you feel better after having the tears. Crying helps big time in my opinion, (no longer in denial) brings it all home, the severity of it. I cried just before my Op mainly from being terrified in going through with the Op. My little girl (age 6) came to comfort me. She said "I've never seen you cry Mummy" and gave me a BIG hug (made me bawl even more).
Twinnumber1 let us know how you get on with round 2, hope it goes smoothly for you.
Foxyferret - is all well?
Sooz x
Netty_E
Member

Re: Anybody between exeter, newton abbot and plymouth?

Hey Sooz & Twinnumber1,
how are you both doing?
i wonder where Foxyferret has got too? hope she's ok.

Tears came today.... been grumpy for most of the week but it finally broke today. But do feel better for it though and now feel more determined to beat this damn thing.
Onwards and upwards ladies!!!
Netty x
Twinnumber1
Member

Re: Anybody between exeter, newton abbot and plymouth?

Netty
i'm so sorry your results weren't as expected, really sorry for you. I can only repeat Sooz, stay positive and we will beat this horrible disease.
I see that you will now need chemotherapy, I will be having round 2 next week if all goes according to plan - you don't feel great for the first week but it's not impossible anod I just treat it as another thing to throw at the disease.
Jess x
Sooz
Member

Re: Anybody between exeter, newton abbot and plymouth?

Netty really sorry to hear your results, I'm gutted for you and feel for you, it's not what you want to hear. If it's any consolation the mastectomy/reconstruction is nowhere near as bad as it sounds. Just ask if you want advice on this as my experience has all been positive so far. I thoroughly researched my options on reconstruction which one to choose and whether to wait or opt for immediate etc.
Saw a TV advert on cancer tonight with two fingers gesturing and "Up yours" being said. Does make you bloody angry!! But WE'LL BEAT IT Netty - stay positive!!
Sooz x
P.s. Don't apologise for being grumpy, I'll be doing some more ranting on here before long no doubt.
Netty_E
Member

Re: Anybody between exeter, newton abbot and plymouth?

Hi all
Unfortunately results were not great.
On day of op the Dr explained that the MRI was showing the tumour to be bigger than originally thought. They took 4cm out and my lymph nodes. Orignally thought only 1 lymph node was affected but they told me today that they removed 26 and all 26 had a cancer presence in them. i also had smaller tumours around main lump which weren't remove. so i'm heading for a masectomy. i'm waiting for an appointment with oncology so that i can start my chemo. i'll then have my masectomy and then radiotherapy and then eventually the reconstruction. i am also Herceptin positive. Was orignally thought to be grade 1 but because tumour was so much bigger and with the other cellls i;m now grade 3!!
feel as gutted today as i did when i first found out. went back to work yesterday (working from home) but on leave rest of week. Hubby and i are going to go out and not talk about this retched thing for a day! lol!!
sorry to be grumpy xxx
speak again soon
Netty xx
Sooz
Member

Re: Anybody between exeter, newton abbot and plymouth?

Good Luck Netty for tomorrow - be thinking of you!

Do hope your results are more successful than mine.

My results showed I had 2 tumours next to each other and another further away. My consultant removed 4 lymph nodes, 1 of the 4 showed up as infected, due to this I am now booked in to have a CT & Bone scan (2nd April) and then I have a Oncology appointment booked for 4th April to discuss the outcome of scans and treatment needed.

The waiting is driving me mad!!

One positive note - I'm recovering from Op better each day, not stooping when walking, tummy and breast swelling/bruising going but still quite numb, and STILL no pain (off pain killers) just discomfort, especially when laughing or coughing.

I hope to post more positive news later next week.

Sooz (Happy Easter to you all) x
Twinnumber1
Member

Re: Anybody between exeter, newton abbot and plymouth?

Hi Netty
Just sending you lots of luck ad best wishes for your results tomorrow.
Jessx
foxyferret
Member

Re: Anybody between exeter, newton abbot and plymouth?

Good luck tomorrow, Netty.
I'll keep everything crossed for you.
I'm ok, still waiting for mammo results. Mainly at the moment trying to keep warm!!
FF
Netty_E
Member

Re: Anybody between exeter, newton abbot and plymouth?

Hi big sister!! (that has a good ring to it!)
i'm alright - did to much and have hurt my arm! so mobiity has been hampered a bit! also means in in doghouse with hubby! oops!
Results day tuesday!! keep your fingers crossed for me!!
hope your ok x
Netty
foxyferret
Member

Re: Anybody between exeter, newton abbot and plymouth?

Hallo ladies,
This is "big sister calling" (we'll settle for that).
Noticed that none of you have posted for a few days. I hope this is because you are all busy doing nice things and not because you are suffering SE's.
Hope all is going well for you. Thinking of you.

FF
Netty_E
Member

Re: Anybody between exeter, newton abbot and plymouth?

Hi
Twinnumber1 - i hope you are feeling a bit better today....... i guess now you'll know what to expect next time. Not that i suspect that is of much help really!
Hubby is away for a month. He also went away yesterday for a week so my parents have come down to see me and look after me! so far mum has done my ironing and dad is out in the garden!! lol!!
i've got a lot more mobility in my arm today but i do worry i've got a bit of cording coming as my elbow is a bit tight. but i might just be imagining it!!
Dressings are being removed on wed so at that point i'll be able to see what i look like! as i was worried about how much of my breast i'd have left - doesn't look like i've lost that much but not sure how much of it is swelling. Should just be grateful i still have it really!!
bye for now
Netty
Twinnumber1
Member

Re: Anybody between exeter, newton abbot and plymouth?

Hello Netty, Sooz andFoxyferret.
i've not posted for a couple of days as not feeling great. on day 3 the side effects have started which is mainly nausea and aching all over. I've taken the anti sickness drugs which has stopped me from being sick but doesn't really take the nausea away. I've just been moping around for the last few days feeling sorry for myself and waiting for the SE's to go.
Anway, I'm glad you (Netty and Sooz) are getting on so well since your Ops. I remember how good it felt to get the surgery behind you.
Netty - hope your husband isn't away for too long?
foxyferret - I woud happily be mothered by you but as I am 49 I think it's a bit cheeky so we'll go for "big sistered". The one thing I've bad a few chuckles about through all this is that I have been referred to as young for having breast cancer but at 48 I didn't feel like it.
lots of love
Jess xxx
Sooz
Member

Re: Anybody between exeter, newton abbot and plymouth?

Thanks for all the advise Foxyferret - I will get over to the "starting chemo in.... thread
Good luck to you all
Sooz x
foxyferret
Member

Re: Anybody between exeter, newton abbot and plymouth?

So glad you're feeling better today Netty. Well done on getting dressed and putting the make up on. Yes, little nanosecond sharp pains are normal, nerves regenerating, but anything you're not sure about... get advice. Don't take my word for it, I'm not a Doctor!
Don't cancel your session at look good feel better unless you really have to.....I've read that they are really good/helpful and the goody bags are really good.

As I've said I can't really help you all through chemo but once you're all onto radiotherapy (if you need it) I can be back with loads of tips!!
Netty_E
Member

Re: Anybody between exeter, newton abbot and plymouth?

hey all,
the difference today is immense! i slept so much better without the drain, i even mananged to get dressed by myself today!! i'm doing my exercises and i even put make up on today!!! i'm getting some sharp pains but i know thats all part of the healing - and i'm not worried as FF had already prepared me.
i agree with you Sooz injections don't sound like fun! and i know what u mean about the drain.. just for a nanosecond i thought 'oh its gone'....... Will be thinking of you on tuesday and will keep my fingers crossed xx please let us know how you get on.
Twinnumber1 - i'll not cancel the session then, i was just thinking it was a bit of a hassle as i'd have to get the bus from ivybridge, as hubby will be at sea by then and my in-laws don't drive and i still won't be able to drive. Really it will do me good to get out and about as i do tend to hide away when hubby is away.
Foxyferret - happy to be mothered by you anytime... and the advice is always greatly received.
i wish you all a fab weekend
Netty xx