Thank you mini mad. That is so good of you to be so open. In fact I received my oncology appointment today so I will find out what they say next week. It is so helpful to have a reference point. Xx
Kip, so sorry. Sending you big hugs. We are all there for you. You have been so strong so far and you will get through this. Feel free to vent. Xx
Love and hugs to all May ladies. Xxx
Hi, CDC hope you enjoyed that shower! Thanks for the good wishes all of you. Feeling absolutely rock bottom today, have the crying gremlin big time and just feel I have gone 10 paces backwards although I know treatment will be a step forward and heading towards the light at the end of the tunnel. I have braved making an appointment to have my hair cut short (currently its passed shoulders) before the chemo begins… even that was so difficult. A Wig company have just called to offer me a session with them to try some on etc but they like you to have lost your hair first or at least shaved it off… not sure what they expect you to do inbetween shaving/losing it and getting the wig?? Overwhelmed, tired, sad and scared Kip xxx
Big hug Kip xxx
Hi Kip, sorry to hear you are struggling, but as you know I am having chemo at the moment and I just wanted to reassure you that the thought of it is way more scary than it actually is. I have had 2 cycles of FEC which apart from feeling sick for the first few days wasn’t too bad. I have now moved onto T with herceptin and Perjeta which I have had a few more side effects with but am doing ok.
Having your haircut shorter is a good idea. Have you thought about using the cold cap? I am using it and have just had my 3rd cycle and still have a head of hair. My hair was thick before so apart from my parting being wider I feel I get away with it. Although I will warn you that hair is constantly falling out and that can be too much for some. I wouldn’t panic about the hair thing right now as it will probably take about 2 1/2 to 3 weeks before it starts falling out.
It sounds like this surgery thread has been helpful for you and I would advise getting into a chemo thread, as you know it’s good to have others who relate to what you are going through. Good luck with it all, I’m sure you will cope well. X
Hi Feenix
How are you doing? Has the surgery healed well? Do you have to have further treatment? I have my 4th cycle a week today and I’m sure next week will go quickly as I have lots planned. Sometimes it does feel like this is going quickly and I will be onto step 2, surgery soon. I hope you are keeping well and enjoying this good weather as much as is possible x
Thanks Kip The shower was great! Had to have new PICO dressings today and it took the nurse about half an hour to put them on and make sure there was a good deal to ensure a vacuum. I was sitting on the bus home and the buzzers started going crazy- they beep and vibrate when the seal is broken!! Got home and all the adhesive dressings had started to come off! Have to go to the Surgery Ward to get them replaced tomorrow. Such a pain so no more showers for me for a while. Oh well I thoroughly enjoyed it at the time. I’m so sorry you are having such a tough time. The idea of chemo is really bothering me too. It’s reassuring to hear others say it’s doable but I’m still dreading it. I think you’ve made a very bold and positive step booking your hair appointment especially when it was difficult to do. Well done! I’m planning on doing the same. Didn’t know about the shaving/losing hair before trying a wig. I’ve been resistant to the idea but may change my mind once my hair starts to go. Sending huge sympathetic hugs and hoping you can get some sleep tonight. Take care xxx
Thanks for all the protein ideas Feenix- sounds daft but I’d forgotten things like lentils which I love. Eggs are a great idea too and egg curry sounds intriguing. Will have to look up a recipe. I’m Feeling much brighter today thanks but will certainly head to ‘my pit’ soon. Have a great weekend. I’ve got to head back to the hospital tomorrow but hoping for a treatment/procedure free Sunday! Take care xx
Hi everyone. Just booked a night away before I go back to work on Monday. Oncologist appointment Tuesday. I’ll be pleased to get it over with so I know what to expect. Daughter home Wednesday. It is her 21st birthday tomorrow. Can’t wait to see her!
Hugs to all xx
Feenix, a 5 week wait for you results must have seemed like forever, and to go back for another op difficult, so I hope it is all good for you now.
My husband has been great and it sounds like yours is a great help too. My youngest daughter starts her A level exams on Tuesday, I am so relived she has managed to continue revising through all of this. I think the older one has found it harder being away but she is home now and we are keeping our fingers crossed she doesn’t need to go back to resit.
I kind of feel like time has gone quickly, those dark days of diagnosis certainly seem a long time ago but I am wishing each day away to get to the end of chemo.
Look after yourself xx
Hi Jazza, lovely to hear from you. Sorry you have had a low week, it comes to us all at some point. Also sorry to hear you are heading down the chemo route but as you’ve already read although it is certainly not pleasant it is not as terrifying as I first thought. If you want to ask me anything at any point I’m happy to help if I can! I hope all goes well for you x
Hi everyone and thank you to all the good advise and kind words. Well the hair appointment is booked for Wednesday (going for a pixie cut I think… gulp haven’t had short hair since school!) then when the time comes its less to lose! I have my first chemo booked for 11 June… so one more week… eek. I think in a strange way I will be glad to get started instead of this constant wondering…
Michelle - its so good to hear from someone going through chemo who says its not so bad, i guess with everything its the unknown thats so scary… well that and the never ending list of side effects they give you!! I may find out about the cold cap, they never mentioned it and I haven’t any appointments to attend before the first day of chemo so not sure if they offer it at Ipswich?
CDC - glad you got the shower even if those dressings caused a stir on the bus! I’ll be supporting you should you find yourself in the chemo club!
Tomorrow I’m meeting up with a lady who has alopecia and wears wigs all the time, she is going to give me some advice on wigs etc as she is an expert and always looks so glam!! I’ll pass on any good tips I get. She said to go to the wig shop before all your hair is gone if you want a match to your normal colour, so once my hair is cut I’ll be going along.
Just trying to have a “normal weekend” at moment, but leaky eyes keep happening…especially when I think of my children. Oh well, I’m focusing on christmas where hopefully this journey will be drawing to an end! Never thought I’d wish away the summer before.
To everyone on this forum… It may be raining today but storms never last forever!
Take care
Kipx
HI Feenix
Im good thank you. Went out for lunch with my husband, sister and brother in law yesterday and had a lovely time talking about everything but"IT" such a relief to normal for a while.
Still just over a week till next results appointment and trying very hard not to worry about what that might hold.
Keeping up the exercises so that if Rads is the next step I will be as prepared as possible, taking pointers from others posts.
I have had a constant steam of cards and flowers delivered over the last 10 days which has made me feel very loved but also causes much tears. This is certainly a roller-coaster journey.
So sorry to read that some of you have had bad news this week but taking inspiration from your positivity and determination. Its a real comfort that I can post feelings on here and get feedback that shows I am not alone on this journey.
Hope you all have a good weekend what ever you are doing and that next weeks news is better and brighter for all. Xx Chris
CDC vwhat a day you have had. Hope tomorrow is better for you and those wounds behave!
Morning all. What an unexpectedly lovely day it was yesterday. My son went to a friend’s to revise for his A levels which start on Monday. His last exam is on my birthday in a couple of weeks so we will have a good celebration then! I have been impressed with how he has just got on with his revision and I hope that this situation won’t wreck his chances of getting to university.
I spent the day in the garden planting my pots and veggies. Then we drove down to South Devon and are staying in the most beautiful hotel. Looking forward to a nice lunch by the sea and then get son back to revision. We raised a glass of fizz to celebrate daughters 21st!
Have a lovely day everyone. Xxx
CDC, after my surgery I saw nurses once for dressing removal, then I saw my surgeon and BCN on Thursday who gave me results and the oncologist came in and discussed the chemo. I got a phone call the next day to give me the start date so haven’t seen oncologist apart ffrom then. Your hospital may do things differently or it may be because of your second surgery ? Still can’t believe I’m having chemo, haven’t felt this scared since I heard those words… you have cancer! However I have now joined the June chemo thread and taking advice from them it’s good to see they are managing ok. Good luck with the oncologist XX
Thanks Feenix xxx
I am interested to see that so many of you have seen details of your diagnosis and received copies. I would have really liked this information, and even told BCN but all I have ever had in the post is appointments! At my post surgery meeting the registrar said specifically ‘you will be offered chemo’. Having read all the forum posts I don’t know if this means that they think it is advisable or not. I wish I had the diagnostic information ahead of the meeting on Tuesday so that I can make an informed decision.
Hope you are all having a nice Sunday. Gentle hugs to everyone. Kx
Thanks for the hugs Feenix. I haven’t had any copies of my reports maybe I should ask? Saw my friend about the wigs, they really are amazing, you would never tell. She uses her nhs prescription which you get if you require chemo, you have to pay first £73 approx. Hers are synthetic hair but lovely and light not itchy or too hot and underneath they have a lace bit which is see through so where the hair parts you see you own scalp and it looks real. Apparently easy to care for just wash it in sink, leave to dry on a wig stand, shake it and wear, no styling required. The hospital have given me a leaflet for a local shop to me which is where this lady goes so I will be phoning tomorrow. Feeling little more posuposi regarding that part at least. She also said they advise going whilst you still have hair so they can colour match if needs be.
CDC hope those dinging dressings behave tonight!! Love to all XX
There is an interesting article about chemotherapy no longer being necessary for many women on the BBC news online today . It’s not relavent to me as I’m Her2 + and have infected lymph nodes but it may be something you want to ask your oncologists about. X
I heard that report on Radio 4 news too Michelle. It is of great interest as they said that it may mean some people will be told they may not need chemo as soon as tomorrow!! I wonder if it will have any bearing on those of us with oncology appointments coming up?
Kip and ktk I have had to ask specifically for histology reports but I automatically got sent letters from my Breast surgeon when I had the results of my original biopsies and then again after my first surgery. Usually had to wait a couple of weeks for them but since I was going in for my reexcision the day after my MDT meeting she just handed me a copy on the last occasion. I suppose it was so I understood what the surgery entailed and why it was needed. This is the letter which mentioned I’d be having chemo. To be fair once I knew I had bilateral cancer she has always told me she expected me to have chemo. I just hadn’t wanted to believe it so kept thinking/hoping that the oncologist would come to a different decision. I really would ask for copies of letters if you have not been receiving them as we are entitled to be as informed as possible.
I am feeling slightly brighter this evening as my OH decided to google my oncologist and she is the head of her department and incredibly well respected. We even watched her on YouTube giving talks about new research into Breast cancer drug treatments. All the science goes rather over my head… However, the thing that came across most for me was her passion to ensure people have a good quality of life whilst going through whichever chemo they need. I’m hopeful she will do all she can to lessen any side effects. Still feeling daunted but she seems very approachable and will hopefully allay some of my fears. Hope everyone is having a restful evening xxx
