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Hello i am new on here

10 REPLIES 10

Re: Hello i am new on here

Hi Patricia

Sorry to hear your hospital doesn't offer the cold cap and I hope you will be able to hire a suitable one. I don't know the name of the cold cap system I used, but I had it at Eastbourne District General Hospital. I think it was bought by a charity for the hospital. The nurses at the hospital used to put it on for me. I had the FEC chemo and I had the cap put on just before they started my chemo infusions and continued to wear it for a while after (sorry but I can't remember how long I had to keep it on my head for each time as it was over a year ago but it was probably about two or three hours in all). I sat in the hospital and read magazines until it was time to take it off. I'm not sure what the penquin cold cap is like but could you ask if one of the nurses in the hospital could help you put it on? I hope you manage to get it sorted out ok. Wishing you all the best for your treatment, it will be worth it in the end whatever happens with your hair as the main thing is to get rid of the cancer. Let us know how you get on. 

Kaya x

 

Re: Hello i am new on here

Lou

 

I am desparate to try the cold cap and to keep as much hair as possible but the North Middlesex Hospital do not offer it.  I have done some research and found that i can pay for the penquin cold cap myself but you cannot fit them alone and need help but i havent got anyone that can help me as they all work.

 

Did the hospital provide the cold caps for you and did you need someone to help put them on?

 

 

 

 

 

 

 

 

 

 

Re: Hello i am new on here

Janet this forum is the only thing that has kept me sane and enabled me to function having just been diagnosed. The hospital were all doom and gloom when they told me and this left me very frightened so it is only reading posts on here that has helped me understand that i can get treatment. I love all the ladies on here for their strength and support.

Re: Hello i am new on here

Sharon 

 

Thank you for your reply.  I have got to have a bone scan tomorrow at the North Middlesex Hospital and when i was phoned to come in for the appointment i went into a panic attack wondering why i was being sent for a bone scan and whether this indicated that the doctors were thinking the cancer had spread to my bones.    Its denial one minute then terror the next which is an interesting combination!

 

I would love to meet up with you as i feel quite lonely maybe we can arrange something soon.

 

Bless u

Re: Hello i am new on here

Kaya 

 

Thank you so much for your reply.   Can you say which cold cap system you used and did you have people to help you put the caps on.

 

I feel so let down that the hospital i am attending doesnt offer the cold caps and i know i can hire the penquin cold caps myself but i dont have anyone to help me and not sure if it possible to change and fit the caps yourself.

 

I am so happy you have almost finished the treatment

Re: Hello i am new on here

Hi Patricia,  I too am further on than you... lumpectomy in December and then started chemo in Jan, next week will be no 5 of 6, then onto radiotherapy.  Just wanted to add my thoughts on the cold cap... I have used it each time and yes it is horrible... but in my opinion worth it.  The first 15-30 minutes are definitely the worst and then you seem to become acclimatised (I even dosed off with it on during my last treatment!).  My hair has thinned, but I have learnt a few tricks along the way to disguise this and hubby (who is very honest with me) says that you would never know.  I have worn hats/scarves through the winter but it is so nice not to have to cover up all the time and look "normal" (I decided wigs weren't really for me).  I would just say give it a try as you can always take it off if you can't tolerate it, but unless you give it a go from the start then there is no changing your mind.  I know many ladies decide not to bother, and I guess it is very much a personal choice, but I wanted to try and at least keep some of my hair so when the chemo is done with I have "something to work with" to get back to normality.

Let me know if you want any more info, and good luck with everything... it does get easier as your treatment plan develops.

Love Lou x

Re: Hello i am new on here

Hi Patricia

Sorry to hear that you have been struggling wondering about results and treatments. We all understand how you feel. I'm pleased the messages on here have helped you. I had mastectomy two years ago, followed by chemo and herceptin. You asked about experiences of the cold cap. The cold cap was very successful for me. My hair is naturally quite thick. It thinned out a bit but there was still plenty left and my hair looked quite normal throughout my chemo, which was great. If you are very worried about hair loss I would definitely give the cold cap a go and see how you get on with it. I know different people have different experiences with it. Some people find it much too cold and decide not to do it, but you won't know unless you give it a go. I found it very cold for the first 15 minutes and then my head seemed to get used to it although I was always aware of its coldness So it's worth persevering for the first 15 minutes as it improves after that. I had it on every time they gave me my chemo. I was pleased I did it. If you try it and don't like it you can always take it off, so it's worth a go as you may get on ok with it like I did. Hope this helps. Don't hesitate if you want to ask me anything else about it. Hope it all goes well for you.

Re: Hello i am new on here

Hi Patricia. Sorry you have found yourself in this position, but welcome to the forum. I am quite a bit further on than you - I have bc that spread to the lymph nodes. Had the suspicious node removed in December and I have now had 4 out of my 6 planned chemo sessions. I will then be having full axillary clearance followed (probably) by radiotherapy. I will also be on Herceptin until next Spring. I completely understand how you feel at the moment - waiting for test results is a horrible time and so incredibly stressful. Once you have your results and treatment plan though you will have something to focus on and it's just a case of getting through it one step at a time. Regarding the hair loss, everyone reacts differently and some find it quite traumatic. I decided to shave mine off as soon as it started falling out and I had already bought a wig. I also told family, friends and work colleagues in advance so they were prepared for the new look me. In terms of feeling 'normal', I think we all have to adjust to a different kind of 'normal' whilst we are on this journey. One step at a time is my motto and you will get loads of support from the lovely ladies on this forum. Sending hugs xx

Re: Hello i am new on here

Hi Patricia,

 

I'm much further on than you (had my lumpectomy end of January and now just finishing my radiotherapy) but I still remember how awful I felt waiting for results so totally get what you mean and hope all goes smoothly for you.  Do you know when you'll get your post-surgery results?

 

I'm quite close to you, nearest tube station is Bounds Green, but I'm being treated at UCLH. I'd be very happy to meet up for coffee and a chat if you'd like, or to come to appointments if you want some support, and I'm always on these boards so easy to get hold of 😄

 

x

Sharon

Re: Hello i am new on here

Hi Patricia11

 

Welcome to the BCC Forum.  I'm pleased to read you have already found the forum helpful and I'm sure fellow members will soon be along to offer you some support.

 

If you need to have chemotherapy you might find it useful to join one of the chemo monthly threads.  You'll find them if you click on the coloured box "Going through treatment"  You'll also find some threads on there in the Chemotherapy section, about the cold cap.

 

I hope this helps

 

Very best wishes

 

Janet

BCC Moderator

Hello i am new on here

Hello everyone i started reading the messages on here one month ago when i was diagnosed with stage 2, grade 2 breast cancer that had spread to my underarm lymph node and my world came crashing down around me.

 

It has only been reading the messages on here that have given me hope and the courage to carry on and get well again.

 

I had my operation on Tuesday to remove the lump in my breast by lumpectomy with full node clearance.  I must say i cannot believe how well i feel after the operation.  I have had almost no pain in my breast or arm and have only had to take painkilling tablets twice.  My arm is only slightly swollen with very minimal numbness and i can use it.  I havent yet lifted it above my head as gonna give it a few more days.

 

The biggest problem is the phycological pain and stress constantly wondering about results and treatment so i am struggling with that at the moment and a mind that keeps working overtime.

 

I feel so alone with this and i would love to make some new friends for mutual support. I live in south tottenham London.

 

I will be returning to the North Middlesex Hospital soon for a body scan and treatment plan and i am dreading hair loss as i just feel it will leave me feeling so vulnerable as everyone will know who looks at me that i have had cancer.   I have told my friends and work colleagues so i have been open about my illness but most of all i just want to feel normal and i dont see how this can happen when i am bald and having to wear a wig.  Would love to know your experiences of using the cold cap?

 

But hey i am so thankful for my treatment so far and that i am in a position at this moment where i can hope for an extended lifespan.