SURGERY JULY 2018

[Jobey68]

Hi Marmite and welcome to the forum, you can't go far wrong here just post wherever and someone will pick up on it 😊

You sound to be getting your head around your diagnosis which is half the battle, things are rarely anything like our nightmares would have us believe! It's best to take things one step at a time, it's a waste of energy fretting about things that haven't happened as often they won't and you would have wound yourself up worrying for nothing. 

Weekends are generally the worst time, I think it's because it's our down time when we should be relaxing and enjoying time with our families, almost impossible with this hanging over us! 

All the best for your op, please come back and let us know how it all goes, it's pretty straight forward and you should be home the same day Xx Jo 

[Marmite67]

Hi

I'm new to the forum (and forums in general so if I get things wrong I'm sorry) having been diagnosed a couple of weeks ago. 

I'm scheduled for a mastectomy and SNB on Friday so thought I'd pop in and say hello.  On the whole it's not been as bad as I imagined in my nightmares (so far but then I've not really started treatment yet). I have had an occasional down day (usually Sunday for some reason) but I know from reading on here that's normal. I won't know until I get my results in a couple of weeks whether I'll have to have chemo or radiotherapy or both but I do know I'll be getting hormone treatment.

Hope everything is going as well as possible for everyone at the moment. 

[SallyG63]

Minnie, if you feel you can't, can you take someone with you who will give them what for? Do it in the clinic, loudly in front of other patients.

[minniem]

I agree, i cant believe a nurse has done nothing about me saying I cant cope - also worryingly that I cant look in a mirror seems to have not been addressed 

I think if I had a BCN I wouldnt have the problems that I do now as I would have had someone to talk to about them - I would be so interested to know if there are other ;ladies in this position 

I am the GP on Monday for bloods so will speak with them then xx

[minniem]

yes Sally, i think I need to stop being polite 

They were inituially doing my bloods 96 hrs before chemo so of couse there was always a problem with white blood cells - (my GP surgery had to take bloood on the friday and my chemo was the Tues) My husband eventually read them the riot act as he said that all they were doing was wasting my time on the Friday. Turns out that becuase Sunday was at the 48hr mark and they were closed , instead of moving it to the  Monday they did it on the Friday. 

I have now been tested for the same thing 4 times as they lost the blood every time so like you I have absolutely no confidence in anything they do whatsover.

I have  now asked my GP for a referal to move my treatment privately (for the surgery at least) 

Thanks for the help 🙂

[Feenix]

Good piece of advice from Sally minniem xx

[Feenix]

Sally ... that’s a excellent way to go xx

[Feenix]

minniem 

I would have expected a nurse to take on board your telling them you weren’t coping. 

I don’t know where you are but there are Maggie’s centres around the country that have a counselling service... I think you would just go in and request. Others have mentioned about Haven as well. You could also go and see your GP ... make an appointment on Monday. This site also has a helpline and the ‘Someone like me’ service. 

You could read the April/May surgical threads as there are those who have gone through a mx..I’ve found them really supportive especially when I’ve been totally stressed out about it. 

Just keep posting here ... you can say how you feel and know we ‘get it’

hugs xx

[SallyG63]

Minnie, if I can just jump in here, I found telling people at the hospital in no uncertain terms that I felt like I was dealing with a bunch of effing idiots who didn't seem to be able to organise a p up in a brewery seemed to help. We'll it helped me anyway. I said that to more than one person and also told them that when they mess up and keep cancelling appointments I don't want a sympathetic tilt of the head and a watery " very sorry, that shouldn't have happened ". I want stuff done, I want departments to talk to each other. Don't make me 2 appointments three hours apart in the same hospital that is nowhere near home and expect me to be happy.

You have to be really firm about the way you are being treaten. Mine improved when I told the consultant I didn't have much confidence in how I was going to be treated if so much was going wrong. That seemed to do the trick.

[minniem]

Hello Feenix

there seems to be no system in whatsoever ..... when I go for chemo they can’t even remember if I have had surgery yet or not. This is the same department that when I had my ECG remarked on how blessed I was in the boob department ........why on Earth woul you say that to anyone far less someone having a mastectomy 

To be honest when I speak to people about my operation it seems to be referred to as if I had an ingrown toenail and that it’s a necessary operation.. 

i am not stupid, I know that it is; but not one single person has ever asked me how I feel about such an operation, it’s just very matter of fact and I should just be getting on with it

So to be getting nothing from the hospital on top of that just makes it worse and worse 

my oncologist secretary is on holiday at the moment so hopefully I can speak to her next week 

every time I have been in for chemo I have said to the nurses that I can’t cope (whilst I am sitting crying) and I just get a sympathetic look with the comment ‘some people are like that’

thanks for being nice xx

[Feenix]

Morning minniem 

Ive not yet had surgery .. few weeks to go yet.

Aw minniem what a hard time you’re having just to get information and a point of contact. I guess having chemo first your team there is your contact but I would have thought they would have things in place to refer you to the surgical team and a bcn.

Have you tried your oncologists secretary ... they are usually good and seem to know everything.

You will have some weeks between the end of chemo and having surgery.

Its an emotional  and stressful time, coming to the end of chemo and surgery next.  Everything can be really overwhelming. Have you family or friends you can talk to? Please keep posting on here as there is support here for you... feel free to say how you feel, have a rant, blow off steam.... we all do as it’s a safe place . Not sleeping also compounds everything you are feeling.... and  having nightmares is just bl**dy awful on top of everything else.

I’m sure there will be someone on here who can give info on what happened between the end of their chemo and surgery... how the system worked for them.

Hope your se’s are minimal after your last chemo... do try and keep occupied. I’ve found that it has helped this past week when I’ve been like a yo-yo emotionally. It’s a big milestone finishing chemo...  

sending a gentle hug xx

[minniem]

Hello Feenix, 

hope your surgery went well

I spoke to someone on Friday and basically as I have chemo first it seems they don’t feel it necessary to give you a BCN, but then in the same breath said I should have had one . 

By this time I wasn’t in a fit state to even have a discussion which is the cause most of the time now. To be honest the damage has been done now.... I cry most of the day and have nightmares trough the night xxx

[SallyG63]

Hi Jazza,

I can only echo Feenix. Hope you are home, comfortable, pain free and being waited on hand and foot. 🙂

Sally

[Feenix]

Jazza.... predictive text

[Feenix]

Jazzy ... hope all went well today and you’re home recovering 

hugs xx

[Feenix]

Hi Jazza

I can fully empathise how you feel as I too was diagnosed in March and feel as though I’m a like a needle stuck in the record .. Groundhog Day. Although I’m gutted having to have a mx I know it’s the histology results which determine everything .. back waiting... hoping you get clear margins. I know I’m mentally struggling at the moment ... it’s good that you can channel your energies through work. I tend to walk but find I might wear myself away at the rate I’m going ... perhaps I should channel my energies into the ironing as the pile is resembling a mountain now  Feeling really tired mentally now.

Hope your nutritionist appointment goes well. I’m er positive but am just trying to have a balanced diet and minimise rubbishy foods. I’m aware that some foods have natural plant based oestrogen eg chickpeas ... I do still eat them but it’s now and then. I do have milk but also substitute some with almond milk eg on cereal. So although I might have cut right down the amount of eg dairy products I haven’t cut them out entirely. It’ll be interesting to hear what the nutritional advice you get is.

Keep busy, have a good day 

hugs xx

[mcnulcc]

Jazza good luck on Friday I will be thinking about you and fingers crossed that they finally get the results you need
I am also hormone receptive and am now taking Letrozole. I am becoming paranoid about what I eat and worried that I am just putting back the hormones we are trying to suppress. I would be really interested in knowing how you get on with the nutritionist.
Sending you and all you other ladies big hugs. Chris x

[Jazza]

Hi Feenix and cdc,
I am still here..... Been keeping up to date with posts but, to be honest, I have really struggled with the thought of another op. I just want to move on to the next stage of treatment. I feel like I am stuck in a hole that I can't get out of. Been here since March diagnosis and it is just so so frustrating 😤.
Have fully thrown myself into work to try to take my mind off it all.
How are you both doing?? Your next op Feenix must be soon.
How are you cdc? Once I know exactly what stage 2 of treatment is for me I may well be on contact for some chemo advice.
Op 3 for me is Friday. I will be asking my surgeon to take a little bit more than they think in the hope they get it all this time.
Have a good day. I am seeing a nutritionalist today to discuss diet but as I am hormone receptor positive I want to understand which foods etc contain hormones. Eventually I will end up on tamoxifen..... Don't see the point in suppressing hormones to then put them back in my body through diet.
Have a good day xx

[Feenix]

Let us know how you get on minniem xx

[minniem]

I havent been able to speak to anyone today as I have not been at home,, hopefully tomorrow 

thanks for asking 🙂 x

[Feenix]

Hi minniem Have you managed to get sorted with your surgical appointment? Xx 

[Feenix]

A blip it is Sally

hugs xx

[ladybowler]

minniem

It just makes my blood boil that you have been treated in this way, it is totally unacceptable but hopefully with the chemo nurse on the case you should have some answers.  At no point should anyone be dismissed in that way

Helena xxx

[minniem]

Thank you so much it’s much appreciated .

I said to the chemo nurse that I couldn’t quite believe that I was taken into a room, given a diagnosis .....(actually I had to read what was ticked on my book to tell me the stage and the type of cancer and the receptors ....no one told me that part)  then told I would have a mastectomy but have chemo first.  So it was like here’s some devastating news and also some more that will disfigure you for life , but here  is a booklet and there’s the exit . We will see you in the summer! 

If it wasnt so bad it would be funny! X

[ladybowler]

minniem

Well thank goodness it looks as if someone is tnow rying to take responsibility and get you sorted out. 

I can not believe the difference, the nurse who was in the room with me when I was diagnosed took me to another room after and went through everything again in laymans language and she has always been there if I needed her every since, I sincerely hope that they sort something out for you this coming week.

Sending you loads of hugs because lady you have been through so much.  We are all here for you whenever you need us and even if you just want a general chat, there is always someone on here

Helena xxx

[minniem]

Hi Helena 

i have the number and can never get through to them, it just rings out.

I ended up speaking to the oncologists secretary in the last few days and she is going to get back to me next week. The chemo nurse was going to speak to the oncologist as she said she has never seen anyone without a dedicated BCN but thinks maybe something has gone wrong as I have chemo first. 

I don’t know what normally happens but when I was diagnosed the nurse in the room couldn’t get me in the lift fast enough  xx

[ladybowler]

Minniem

I am sure that is completely wrong.  Are you in this country or abroad? 

If you are in the UK,, when you were diagnosed did you attend a breast clinic/unit in a hospital, if so you could contact them, you should be able to get the number from the main switchboard at the hospital.  Ask for one of the breast care nurses to call you back as a matter of urgency and give them a brief explanation of what your issue is.  You could also ring your Oncologists secretary and have a word with her, explain that you have no idea what is going on once you have finished chemo as you have not been told.

If you have no success with this you can contact the PALS (Patient Access Liaison Service) team, again if you ring the hospital and ask for them, you should be put through, explain to them what you have told us and ask them to look into it on your behalf.  They will then contact the relevant departments to find out what is going on and get back to you.

You absolutely do not need to have this sort of stress whilst you are undergoing chemo.

I wonder also if because of what you have told the chemo nurses, if there is anything they can do to find out what is going on so that you have some clarity and a plan for your next stage of treatment.

Let us know how you get on

Sending you hugs

Helena xxx

[minniem]

Hi Helena

i don’t even have BCN , I mentioned this to the chemi nurse who was horrified ....when I was diagnosed I asked if the nurse in the room would be the dedicated nurse and was told no I didn’t have one.  I wa stood I could call any nurse in the dept but when I do the phone just rings out x

[minniem]

Hi Feenix

no one has discussed a thing with me ....I don’t even have a dedicated BCN

i told this to one of the chemo nurses last week and they couldn’t believe it ......when I was diagnosed I asked  and was told I didn’t have one x

[SallyG63]

Feenix,

You know we're with you. We've already been through loads together, try to look on it as a blip on the way to recovery.

Sally x

[ladybowler]

minniem

I would echo what Feenix has said, give your bcn a call tomorrow you should know what is going on and when at all stages.  She will be able to check what is in the system just in case there is an appointment for  you to go in to discuss the next steps, which you have not had any notification

Helena xx

[Feenix]

Hi miniem.... I can only suggest you contact your bcn and she should be able to find out when you would be seeing your surgeon again to discuss your surgery and give you your date. Once you get your date you will be able to plan and prepare. Have you discussed your options before chemo?

xhugx

[Feenix]

Thanks cdc... hugsxx

[minniem]

I am still waiting for a date for Mastectomy which should be very end July or even early august as final chemo is next week. No one has discussed anything at all with me whatsoever. Since the surgeon told me I would be having chemo the only contact I have had with anyone is two appointments with the oncologist

Coping is extremely difficult as I have no idea as to what is going on 

[cdc1811]

Hi Feenix, Hi Jazza

Just wanted to say I'm thinking of you both in the run up to further surgery. Big hugs xx

[Feenix]

Jazza ... how are you doing ... you’re for surgery this coming week if I remember correctly

xhugsx

[Feenix]

Thanks Jill

Belmont Rosie ... hope you’re doing ok but conscious you’ve just completed 8 cycles of chemo. You asked about coping mechanisms. Have to say I’m up and down like a yo-yo ... I’ve done research, asked questions, looked through other threads and of course gained insight from those who went through surgery April and May. Strategies for keeping my head in gear have included walking, meditation, jigsaws, reading... footie helps at the minute and luckily I like watching tennis....just trying to keep busy. I can’t say Im finding it easy because I’m not. I remind myself why I’m needing surgery, to look at the bigger picture. I can say eaxactly how I feel on here and there is always support at hand. It’s really good to have mutual support with those who are going through the same

hugs

xx

[Jill1998]

Good luck with your op Feenix.

[Feenix]

Thought I'd start a thread for all of us having surgery in July. I'm also in the April thread, and the May thread... Ive had really great support.. still do xx