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.  

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

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

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

I have 5 sessions left. Next one is on Monday. 

Yes, I rather eat loads than having no appetite. 

I started wearing my wig over the weekend and it's made me more confident xx

How are you getting on?xx

Nothing is happening till at least June. I'm seeing the new oncologist at the start of May, and a phone appointment at the end of May with another one.

I'm glad your wig is making you feel more confident, losing our hair is a major self esteem issue.

I've bought loads of wigs, even though they Said they'd fit me for one. 

I'm kinda hoping I get the "no appetite" I could do with losing weight! 

5 sessions left, that's great soon be over with.

I was told I'd have to have 3 a week for 3mths then another kind 3 a week for another 3mths

Then 5 days of radiotherapy. 2025 isn't looking good for me, I will still be in treatment.

Maybe this new oncologist will have a different take on the treatment

At first, I had a fear of going out but once I did, i was ok. Im upset about my hair but it is what it is. 

Omg, that is alot of treatment. Yeh, wait until you see your Oncologist. Hopefully their take is different. If you are still in treatment next year,  just think that all this is to make you better.  This is all I keep saying to myself. 

Every 4 weekly,  I have to have injections to suppress my ovaries alongside the hormone tablets, which should start in September x

How are you feeling in yourself now?x