I just had my first appointment with the oncologist and hopefully my last with her as she was horrific, cold totally lacking empathy and not a sympathic bone in her body.

The cold cap has never been mentioned to me by any of the Bzc nurses or the oncologist even though I know the local hospital was gifted one and had it still in 2022.

All Ive kept being told is I will lose my hair.

I've bought loads of wigs from shein since November when I was first told chemo was a possibility. I was told by the nurse on Tuesday that they will supply a wig and names of salons who can style it for me. (I'm in Scotland) 

Please keep us updated on how your chemo goes x

I'm so sorry to hear this.

My breast care nurse wasn't compassionate.  When she told me in January that I might have to have chemotherapy, I burst into tears. I was on my own that day. When I cried, she got up and walked me out the the door. 

So I completely understand how you feel , I really do. Could you speak to the Oncologist receptionist and ask if you could have the cold cap? If that's what you would like?

Luckily,  I only get calls from her now. The last call was from her colleague as she was absent and she was so much better. Sympathy and didn't rush me.

My Oncologist was amazing and the nurse who accompanied him was amazing.  

That's awful but I'm glad you mentioned it. Hopefully you'll hear back soon. If not, I would recommend you ring them up and chase this up x

I know what you mean, hopefully you will get the answers to the cold cap soon. We have enough going on without having to chase hospitals xx

What's the dentist for?sorry, I'm asking because I didn't get asked to have one x

Thank you.  I will keep you posted xx

I had to chase them up to start letrozole as they never sent the letter to my GP thankfully I only waited a week until I got in contact, and they sent a electronic message to my GP who called me that afternoon saying it would be available for pick up a few days later.

The oncologist said I needed the dentist to check my jaw bone .... when I mentioned that when my BC nurse called me, she had no idea why that would be required but said a complete Check up yes, just to make sure I don't have any issue needing sorted before chemo as chemo can affect your mouth.

When I was in for my first lumpectomy, it was meant to be a day case, I'd get out that same day but they had to keep me in over night on oxygen and a drip. I only noticed the week after that my discharge papers showed I was discharged at 3pm same day as my surgery with no adverse affects. I wasn't even out of surgery by 3pm.

I mentioned it to the BC nurses in an email they said they had sorted it and the ward doctor sent their apologies.

2nd lumpectomy 3wks later.. the nurse was going through pre op things and asking me about my first lumpectomy and no where on my records did it say I was kept in overnight, or why . She said "good job we ask the patients " I contacted the nurses the following week and got an upitty reply from one saying any medical person has access to my records and can see that they have been updated.

Well they weren't on my day of surgery or the nurse would have known I was kept in. As it happens, I was kept in once again and on a drip and oxygen. Apparently anesthetic likes me too much and they can never get me fully awake. Thankfully because it was already mentioned to the nurse at the pre op. They didn't bother waiting hours to see if I'd be up and about and put me on the ward in my own room till the next morning. 

Honestly it doesn't make you have faith in your treatment when these things happen.

I waited 6wks for the results of my 2nd lumpectomy when I queried why it was taking so long a BC nurse replied that the time off at Christmas and the pathology lab moving had held up things.

I was thinking oh great this is just my health... nothing important!

Hi, appologise fir the late reply.

I know how you feel. You feel like your health just doesn't matter. You haven't had much luck and yes, it doesn't give you much faith with further treatment.

I wasn't asked about a dentist appointment.  I had blood tests, heigh and weight done. 

Im actually cant wait till the 1st round is done. Im nit syre wgat im going to do about work yet though. I onky do 4 hours a day so i might be able to continue for a bit depending o. What symptoms i get xx

Did you hear back from the breast nurse Regarding the cold cap? Xx

No, nothing but I got a reply to my email about my dentist appointment being fine.

I think they often forget that they are so used to all of this but us a as individuals this is new to us.

Please keep us updated xx

I totally agree with you xx

I will do xx

Hi,

Todayd didn't go well

They have had to stop my chemotherapy half way. Hand and arm are all swollen from administratoring it, snoI had to wait to go on a drip which I dud today, have to do tomorrow and Saturday xx

Then I have to start chemotherapy from scratch next week, if all is well. If not we'll, then it will be delayed xx

Been here sine 7.30am and got home at 8.05pm xx

Oh sweetie, that's horrific I've replied properly below sending you huge hugs xx️

Thank you.  It's scary isn't it? 

Going yesterday,  I was worried about the cold cap but when I resume with the treatment  I'm now going to be more terrified of them administrating it. Going back to the hospital 3 days in a row to have it all flushed is draining.

I have been referred to have an icision so a line can be put in to eliminate risks but they couldn't tell me how long the wait is.

Had 3 hours sleep.

One of the nurses is working on the chemo ward on Saturday so that the 3rd round of the drip can be administered. As it has to be 3 fay's ina row at the same time (3 hours leeway each side).

Very scary, something that I wouldn't have thought about either.

They often have problems getting blood out of me, one appointment 3 different nurses tried then they sent for the phlebotomist (spelling) and she got it first time.

So now I'm working about your experience!

The cold cap.... I get migraines a lot a month, thats a worry about the cold cap.

But! I hope they manage to sort it all out for you, what a worry, as if having chemotherapy wasn't scary enough xx

Crikey, I hope you will be ok too. Fingers crossed for you. I understand exactly what you mean regarding the blood tests. I'm the same xx

I have severe migraines and I was worried about it. I was advised to take my migraine tablets an hour before coming to the hospital and I was fine. I take Zapain normally for migraines.  I have a slight migraine today but thats because I haven't really slept. They say the 1st 20 minutes is the worse with the cold cap but I didn't think it was that bad.

Have you managed to hear more about the cold cap at your hospital?

I just hope I can just start it again soon but it depends if my swelling goes down. The are unable to use the other arm because its the same side that I had my lumpectomy xx

Crikey, I hope you will be ok too. Fingers crossed for you. I understand exactly what you mean regarding the blood tests. I'm the same xx

I have severe migraines and I was worried about it. I was advised to take my migraine tablets an hour before coming to the hospital and I was fine. I take Zapain normally for migraines.  I have a slight migraine today but thats because I haven't really slept. They say the 1st 20 minutes is the worse with the cold cap but I didn't think it was that bad.

Have you managed to hear more about the cold cap at your hospital?

I just hope I can just start it again soon but it depends if my swelling goes down. The are unable to use the other arm because its the same side that I had my lumpectomy xx

My BCN emailed me back saying it's available in the hospital I will be having chemotherapy in and that the nurses will discuss it with me when I get my appointment.

Seriously as if you weren't worries enough about chemotherapy now all this and a delay to you actually starting it properly.

So you had all the lymph nodes removed from the other arm? 

I only had two, one had cancer cells but they chose not to remove them all, and my second lumpectomy was straightforward.

Och you know you can't help but think that stuff like that shouldn't happen, it's stressful enough having to have chemotherapy with out going through what you have just experienced and on your first day.

I hope your arm sorts itself out quickly so you can get started properly on the chemo and atleast your on the way xx

I'm glad you managed to get to the bottom of the cold cap and that ots open for discussions.

Yesterday,  I have been given my next chemotherapy appointment and it's on Thursday at 8.30am. Also they managed to do my PICC line yesterday too. I just have to keep getting this cleaned and flushed every week.

Yes,I had my lymph nodes removed from.my other arm and they were clear. 

I'm pleased to hear that your second lumpectomy was a success.  

Thank you. Please let me know how you get on with your next appointment.  I hope all your questions are answered xx

That's a relief that they did a picc line for you, hopefully all will go well on Thursday xx

Thank you xx

Hi, sorry for the late reply. 

Thursday had to be cancelled as I ended up collapsing and sent to hospital in sn ambulance. 

I did end up having mu chemotherapy today through the PICC line and it was so much better.

I got a senior nurse looking after me and she was absolutely amazing.  I was so pleased.  She was so patient and took her time with everything.  

How are you feeling and getting on?xx

Crikey you are having quite the time of it, glad the chemo went well with the picc line!

Ach no further on.. 5wks since my oncologist appointment and no word of a CT scan or anew oncologist. I feel somewhat abandoned! Xx

Omg,  I'm so sorry to hear this.  This is the last thing you need.

Have you tried ringing the triage department at the hospital, to chase up the appointment?xx

I bit the bullet last week and emailed my BCN, she said I've got a new oncologist and she would chase him up. Yesterday I got my appointment through to see him to discuss treatment. It's in 3wks.

How are you getting on?

Aah, that's good news that you have finally had some answers. Hopefully you will be able to get it all sorted when you see your new Oncologist and make a start on your treatment xx

My hair has all matted since Sunday and coming out in clumps everyday since then. I've lost about 70% of my hair using the cold cap already so I'm now going to get my hair shaved on Friday and ditch the cold cap.

I'm very tired/exhausted but a part from that I'm ok. I've got my appetite back now and eating probably more than I was before chemotherapy xx

Oh no, I'm so sorry the cold cap didn't work. 

How much more chemo have you to get?

Glad you have an appetite, you need fuel xx