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Newbie (Southampton)

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Re: Newbie (Southampton)

Forgot to add, Kate, that I'm down as Nurse Led this week as I've already seen the doctor so I imagine I'll be whipped through to treatment room kinda early on.

mousy

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Re: Newbie (Southampton)

She should find out tomorrow, she thinks... She's been told she's near the top of the list.

There's a fair chance that the caravan holiday she's booked for end of July (that my elder son was going on) will be cancelled, but thinks she'll be able to manage having both of them at her house... eeeek... (Has she actually met my two recently?)

mousy, who won't be allowed to wallow and would have preferred to do the first chemo without "strangers" from the other side of the family about...

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Re: Newbie (Southampton)

I know the problems with family and needing help. Everybody just worries and that leads to stress and misunderstanding in my experience. Hope all goes well. My mum know stays in a guest house when she comes to stay or with my inlaaws or friends as we have no room here and it eases the stress.
Hope you mil gets over her op soon. When is it? They always say it never rains but it pours!!
Now I can't see what else you've written and computer playing up.
Hope all goes well on thursday.
Kate

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Re: Newbie (Southampton)

Eeeeek... Now MIL is coming for a visit... Should *really* get some relaxation then.... (not)

She'll whip herself up in a cleaning frenzy (it's the ex-matron in her) and I'll be in bed feeling guilty... She's also due for a hysterectomy shortly so isn't doing lifting (umm, with two small children here???)

I'll also be stressed out tomorrow trying to clean this place up and find her something to sleep on.

Was hoping I'd have a chance to get into a routine with the chemo first (and get her through her op recovery time).

We don't get on well at the best of times...

mousy

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Re: Newbie (Southampton)

PS I'm ER- PR- and the HER2 result isn't in yet.

I'm a little unsure whether HER2+ or HER2- is better... they both sound pretty bad... but at least there's now Herceptin for the HER2+ people...

mousy

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Re: Newbie (Southampton)

Kate:

I've never noticed the chemo room smelling - it's the fluorescent lights I find difficult to cope with.

Ah, now maybe that's when you need your sunhat, sunglasses and beach towel.

Perhaps they had just been mixing some chemicals up (but probably too late in the day for that) or cleaning some equipment.

I think it depends on the shape of your head on the success of the cold cap.

I didn't like the sound of wetting my hair first... Must leave you with icicles on your head...

It is very hard getting help with the children and it is always the same old story - you can never get anything if you are working.

Well, I'm not working (used to do accounts temp work before my youngest was born) but DP is. I was hoping to get back to work soon to raise my self-esteem, so we're not facing loss of income but loss of intended income. And our house will still be disintegrating due to all the DIY it needs which is now being postponed again.

Make sure you get a prepaid prescription certificate as otherwise yoiu will have to pay for each of the anti-sickness pills. They don't come free!!!

I have just picked up info on that today. Is it worth going for the annual one or just 4 mths? Do the number of prescriptions slow down once chemo is finished or will it still be quite a lot for many months?

Am getting my scan results on thursday - don;'t think they will be good as my breathing is so crap at present so will probably be in floods of tears!!

Well, hopefully the news will be better than you think, but in the meantime... sunhat, sunglasses, beach towel...

mousy

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Re: Newbie (Southampton)

Hi
Good news about the results - am pleased for you.
I've never noticed the chemo room smelling - it's the fluorescent lights I find difficult to cope with.
I never bothered with the cold cap as everyone I saw lost too much hair and it was always in the same place at the top of the head and for me that felt worse than losing the lot. I also didn't want to sit there for 5 hours more than necessary but give it a go. I think it depends on the shape of your head on the success of the cold cap. Sorry that sounds really depressing.
I find the Macmillan centre a strange mixture as the volunteers tend to be more on the elderly side yet the atmosphere is bright and breezy.
It is very hard getting help with the children and it is always the same old story - you can never get anything if you are working. Actually, in cancer care I don't think it makes any difference, the benefit system does not appear to be set up for young women with cancer and children. I think you will find you will manage the kids most days OK but just need help for a few days each cycle.
Make sure you get a prepaid prescription certificate as otherwise yoiu will have to pay for each of the anti-sickness pills. They don't come free!!!
Am getting my scan results on thursday - don;'t think they will be good as my breathing is so crap at present so will probably be in floods of tears!!
Hope all goes well for you on thursday. Just ask if there is anything you want to know. May see you on thursday or if not may see you in the future
Kate

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Re: Newbie (Southampton)

Update: Good news. All of last weeks tests came back clear, so as far as they can see they're just dealing with 2 breast lumps plus the lymph nodes that side. As good a result as I could expect.

I start chemo this Thursday as previously advised. I am Ok'd for Neotango trial and will be in the group doing 4 cycles Paclitaxel/Gemcitabine (2 weekly) followed by 4 cycles EC (3 weekly)

Had a look through the chemo room (horrible stink in there) and had a chat with the ladies on duty about the cool cap. They were very sceptical about it, especially since the drugs I'm starting on will mean I have to wear the thing for over 5 hrs. (a little extra they say because my hair was permed only a month or so ago). I will give it a go though...

Also popped down to see the Macmillan people but have to say the place freaked us out a bit. Way too "New Age" an atmosphere for us... Doesn't sound very promising for getting practical/financial assistance. DP probably earns too much. Might be better finding a school student needing holiday work.

Will probably go back for some free massages at some stage though.

mousy

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Re: Newbie (Southampton)

Will check about the hormone thing on Monday. Last time I spoke to the doc the results of that weren't in, I don't think (or he didn't mention it).

I asked one of the nurses(?) to check when she rang and she checked and said continuing with the mini pill was fine.

Thanks for the reassurance re the bone scans. Maybe they're just trained to be sadistic...

I had a chat with my son in bed tonight and at least he was a bit more communicative. He was talking to me more like a 6-7 year old, asking about whether my glasses went into the x-ray machines too and how I would take the medicine, and was telling me about how the pictures needed to be kept on file so that they could remember me and compare them to the next ones and that kind of thing. I can't believe the sort of insight I'm getting back from him.

On the downside, though, I had to stay with him at the party he went to this afternoon because he got clingy and wasn't joining in at all. I can't believe it took him an hour to get on the bouncy castle.

mousy

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Re: Newbie (Southampton)

mousey
It' all very confusing about hormone and herceptin receptiveness.
You can be hormone positive or negative. You can also be herceptin positive or negative. Just because one is negative does not mean the other is as they are independent of each other. Some people are triple negative meaning their tumours are not progesterone or oestrogen positive and their herceptin status is also negative.
I am hormone negative but herceptin positive but some people are positive to both hormones and herceptin which widens treatment options!! Are you still with me - somewhere on this website can explain better what I'm trying to say!!
You can not have herceptin until you've had some chem. They do the herceptin testing at pathology at the operation as well as at biopsy so you are not missing out by having the chemo first.
I actually hate going with my husband as he always falls asleep and he cramps my style socialising with the other women!!! Saying that, it is a good idea to have someone there to drive you home or run around getting you drinks etc as well as keeping you company. Somehow my hubby always seems to be absent at the moment when I need him - like putting the cannula in!!!!
If I see someone new with a non-communicative partner then I can take it's a good guess it's you!!! I'm not sure if I'm going alone next week or will be with a friend!!!
They always ask those questions at bone scans - it always frightens me and I've had 4 of them!!! This time they kept going on about my lower back so feel spooked that there is a problem there now!!!
Good luck - let us know how you get on on monday and maybe see you in the waiting room and if we meet, we do and if not iand you want to then I'll see you another time. You can leave a message for me at reception if you like but I don't want to pressurise you.
Hope your son settles down - it is such a worry. Even at this stage I can pick up my heavy 7 yr old - the only time I couldn't was just have surgery and at the end of rads. I always could during chemo but then I'm a stubborn bugger!!!
Keep in touch
Kate

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Re: Newbie (Southampton)

Southampton too! Hiya

So sorry you are joing us, I too am in Southampton and have had chemo etc here. I have found the care excellent and can assure you that you are in good hands, also they seem very forward thinking in the treatment and are always at the fore of any new treatments.

I hope for good news on your scans and can assure you that chemo is really OK, I found it quite bearable. Yes, you do get used to the groping and probing (unfortunately!!!)

I will try and look to see how you got on nextweek.

Good luck

Jan xx

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Re: Newbie (Southampton)

Thanks Nicky and Kate.

I've now finished the testing process and am into the 3 day wait for the results.

I found the bone scan man's in depth questioning re pain a bit worrying. I know he told me before that he was going to ask some questions afterwards but it was sort of like he was wanting me to confess to some other pain... a bit disconcerting.

One thing I forgot to mention is I'm hormone negative, so guess that means Herceptin's not for me.

Kate, I'll see if I can spot you. I think my partner will be with me and he's not a very communicative type, so it might be easier to chat on a latter visit when he's not there... (he's not all that communicative at home either but I have to say that since all this happened we've done way more talking than we used to). I expect if we're there for the same sort of treatment we'll be arriving at a similar part of the day.

We already have the behavioural people involved re my no 1 son. I have been attending parenting classes and he's on their SENCO list as an able child. Academically doing very well but not wanting to join in on group activities like music and PE and throwing tizzies under the table etc. He is the youngest in his reception year though.

At the moment we are having to prise him out from under the table every day when we go to pick him up... and then carry him part of the way home as her lays on the ground and won't move. I don't know what I'm going to do when I'm not capable of carrying him any more. Expect we'll find out next week.

Eeeeeek
mousy

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Re: Newbie (Southampton)

in southampton too!! Hi Mousey
I posted a reply to this as I'm in southampton so don't know whether it was removed or where it has gone???!!!
Too tired now to post my huge reply - probably best as you don't want me to ramble on aimlessly.
I'm really sorry about your diagnosis and can understand your fear of needles and the prodding about bit. The chemo nurses are excellent and very helpful even if the system seems slow!!!
I'm treated at Southampton and have an appointment there on thursday at the general so will probably see you in the waiting room. Maybe that's why they removed the post as I told you the time I would be there!! If you look at my picture on the profile hopefully you will recognise me - if not just ask the receptionist to find me. Just don't read the rest of my profile!!
I was 43 at diagnosis and had chemo first - unfortunately I have had a very aggressive and non responsive cancer so please don't read my profile cos you'll only scare yourself and I am a bit unusual in that way!!! I've got small children too. Ask the school for help for your child - it's difficult for small children as they can't find the words to say how they feel so play up instead. Mine have had some brilliant help at the juniors which has made a big difference.
Everybody reacts differently to chemo and I found I needed help the first few days after each session but was then OK but did get tired. Friends have always supported me and still do - probably more than my family but that's another story!!
Anyway, if you want to meet up on thursday I will be there and if you don't want to speak to me that's fine as well!!
Wishing you the best
Kate

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Re: Newbie (Southampton)

Hi Mousy

It's a shame you have had to join us, but welcome! You will find this site invaluable for finding out info, sharing experiences and generally having a moan if you feel like it, or alternatively a laugh.

You worry about coping, but you will! You say that you find your kids exhausting, we all do at times, but it is them that will help you get through this! I find the normality of doing the school run the only structure in an otherwise uneventful day.

You mention that you are having chemo first, you sound similar to me (see my profile) in age and order that you are having things. I know that everybody is different and has had different experiences, but I still after 7 out of 8 chemos haven't found the experience to be as bad as I had expected. I have had niggling/ annoying side effects at times, but no sickness at all and have got on and done mostly what I have wanted to get on with.

I wish you lots of luck with your treatment, you may not have family closeby for support, but you will find out who your true friends are, do use them, don't be afraid to ask them for help/support and do ask on here if you have any questions.

Take care Nicky x

Re: Newbie (Southampton)

Further Information Hi mousy

I am sorry to hear of your recent diagnosis, but would like to welcome you to the Forums. I am sure you will receive lots of helpful advice and support from our users.

Below is a link to a Breast Cancer Care publication Resources Pack which can be ordered on line, it is filled with information to help you better understand your diagnosis, test results and the various treatments available.

http://www.breastcancercare.org.uk//content.php?page_id=7514

Kind Regards

Forum Host
Breast Cancer Care

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Re: Newbie (Southampton)

Newbie (Southampton) Hi,

I was diagnosed stage 3 last week, two lumps one 5cm, one 3m. I went as soon as I noticed but, being big busted, obviously things have got further than I would have liked without me noticing. Lymph nodes that side are affected.

I have been for chest x-ray, liver ultrasound, MRI and extra biopsy for the clinical trial this week. Bone scan is tomorrow. Liver is fine, but other results I will get on Monday. Chemo due to start next Thursday. I will be glad when Monday has passed because right now I am worried I might go stage 4.

They gave me the option of of full removal now or attempting shrinkage first (their preferred option).

I'm 42 with two young kids under 5. No family living nearby. Mine are on the other side of the world, my partner's are 2 hours away. Luckily (?) my Dad and step mum are here on holiday (on and off) until mid August but how I'm going to cope after that I do not know. I find the kids exhausting enough now. My elder son already has behavioural issues and he seems to be distancing himself from me the past few days.

I have been very impressed by the swift way that things have moved along since they told me, though obviously I'd rather not *need* to be treated as an urgent case.

I hate needles, however, and am not quite sure it seems to be open season for my front to be groped, prodded, jabbed, etc. (Is this something I'll get used to???)

mousy, ears still ringing from the MRI and not looking forward to a birthday outing to be irradiated tomorrow...

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Newbie (Southampton)

Newbie (Southampton)