Surgery tomorrow. Feeling terrified!

[sazza38]

Hi egret
Rads haven't been mentioned at all, but I should get my full results and next steps 20th may.
Hopefully were looking at less treatment- had to go and see my consultant Wednesday as he wanted to check my drain was healing well and he was happy with everything he also told me took too sentinels out and slightly more tissue as he got a 2nd opinion as to how it was with the dye etc.
Think New York gonna be off for a while, the fact I was dismissed from my job over this means I won't have the cash to go - well,until I take them to a tribunal that is!!
think sometimes the breast nurses get carried away a little! The district nurse who came to check my Drain and remove it on the other hand is lovely and said they're their even if I neede a brew and a chat she's always available.
Think we're about the same age and have sons the same age so that's helps plus she's seen loads of local people been through and current.

Hope your treatment is going well - the light at the end of the tunnel is what I need to focus on xx

[Egret]

Hi sazza, I am completely with you on that score! The oncology nurse gave me the best answers, but saw her only the day before my first chemo session! I typed a page long of concerns and brought it with me along. She was the one who handed over a £80 voucher towards a wig, told me there was no VAT, ensured that on treatment days there was a free parking space, and explained to me the risks from low immunity. From my own experience, it is only after the operation and the various tests (eg CT scan, bones scan) that surgeons and oncologists can offer you more control. They need the results to devise options for you. From my experience, once I agreed on a course, this is when I got control and it will stopped spiralling. The wait is very difficult. Once again, best wishes! Egret x

[Egret]

Hi sazza38! New York is a great place, I loved the boat trip looking at NY from the water. i started 6 cycles chemo in April, and had to revise my hope of finishing and escaping my October. Newwy47 is right, I didn't count on rads! Then, from an insurance point of view, insurers like a couple of months after the end of treatment. Best wishes! Egret x

[sazza38]

I was told I'd need chemo as well for between 4-6 months but don't have a set plan- to people who don't know me I may seem a little naive but this thing has taken nearly two months off me already with the stress and worry it has caused, my job and gonna put me in a very difficult financial position because I lost my job.
Taking control is what I do best and I need to get control back from it - I know I'm having herceptin for 12 months afterwards and hormones for 5 yrs - my treatment changes from who I speak with so once I've had surgery I want to speak with the oncologist to answer questions my breast nurse skirts round and the nurse doing my pre op changed my diagnosis completely!
I just need that elimant of control and not let it run my life - I wont let it or take my hair even tho I've noticed more grey than I had before! X

[Donnaandfamily]

Hi Sazza

WOW that is tight going...126 days...from surgery to end of chemo.....takes you to September 10th...so a goal to aim for!!

I don't know if you know your plan of care...but it is usually surgery followed by a 5 week break and then chemo every 3 weeks for 6 sessions. You will have to consider your herceptin too to fit around your journey which is also every 3 weeks. Radiotherapy usually starts about 5-6 weeks post end of chemo.... and is daily for 3 weeks approx'. I know of people who have delayed the radiotherapy but no longer than 3 months after finishing chemo.

I would say think ahead and contact your lymphodema nurse...my hospital still recommend wearing an arm sleeve during the flight and the same number of hours post flight.

You may find it difficult to get insurance when you will still be having treatment..so would advise looking around now. The Macmillan site has some contacts for insurance companies.

Keep positive though....and you will find strength.....it's all so scary at first......

I am only 16 months ahead of you.... just finished my herceptin... I had operation, FEC-T, radiotherapy, Herceptin and I am on anatrazole for 5 years.

The journey flew by ...just waiting for every 3 weeks to come around...... on the FEC - I would feel rough for a few days post chemo...but still managed to go out shopping etc...and by day 5-7 I felt nearly normal...The T part of the chemo tougher and this took me about 7 -10 days to feel "normal" but again nothing horrendous....tired, lack of energy and not great at sleeping.

The medication for sickness is fantastic...I was never sick or felt sick......

I wish you well .....put your goal up and aim for it...striking off the days.Check you will be able to fly so soon because we are at increased risks of complications when we first stop treatment

Good luck

Donna x

[newey47]

Hi Sazza, do you have to have any other treatment,i.e. chemo or rads? as I was thinking that October was pushing it a bit if you do have to have anything else? You will be closely monitored now they know about the heart thing, and I am sure there will be no problem with anaesthetic and OP if you didnt have any probs with the twins.  good luck anyway

Val xxx

[sazza38]

Thank you for replying donnaandfamily, i had a general aneastistic 2 yrs ago when I had my twins and didn't have any problems - I did have lots of health problems in my pregnancy -so I'm wondering if I've always had this valve problem which they seem to think so.
I can still have herceptin, but not as part of the drugs trial as I was 1% off the heart chart! Typical!! They will monitor me and have referred me to the cardiologist for a 2nd opinion, as I haven't heard anything I can only assume it's not an issue, think it's more my kids are still so young and need me I'm more scared of.
As for my journey, I've told them I want to have completed my chemo by October - my bday so I can try and get away as I promised my eldest a long weekend to New York! He want to see stark enterprises and the Baxter buildings!! ( an avengers nut and haven't the heart to tell him their not real! ).
How is your journey now? X

[Donnaandfamily]

Hi Sazza

you echo my thoughts of last year when I started my journey. I too feared not waking from the anesthetic...but what choice do we have...and the silly thing is I am a nurse and know the very slim and I mean very slim chances of anything going wrong. It is natural we fear everything at this time.... just trust it will all be good...and the procedure does not take that long.

The herceptin will still hopefully go ahead once you start your chemo.....with regular scans of your heart.If you cannot have the herceptin there are alternatives.

Just think this time next year you will have completed your journey and this will all be  in the past

Take care and good luck

You will be fine

xxx

[sazza38]

Well I've been brought forward for my surgery! ( I'm due to have lump removal and lymph nodes) It's happening tomorrow had the last few days rushing round for pre op appointments etc.
During my tests for the herceptin trial I was due to take part in they discovered I have a faulty heart valve- never had any symptoms etc... To say I'm relived things are moving quickly I'm soo scared of surgery and have this horrible feeling that's something is gonna go wrong - I do usually have really good but instincts so to say me being worried is an understatement! Not helping that my youngest two are playing up, upset and upsetting me too!
Anyone else felt like this?