Hello all you nice ladies. I had my Portocath fitted on Thursday and the procedure went easily enough and I didn't even need any sedation - go me! The whole thing took 50 mins but that included going into the room, getting everything ready etc so I guess the actual 'operating' time was only about 20 minutes and a lovely nurse held my hand the whole time. The surgeon even had music playing in the background which - even though The Specials would not be my music of choice - was a nice touch. I felt a bit stiff afterwards and achy yesterday but the wound site is much easier today.
i understand your handbag envy Anne as mine is shoes but I have found myself trawling hat sites lol. One nice site for anyone looking is www.annabandana.co.uk. I am going wig shopping today in Leicester and am actually quite excited about it - I could go for a completely new look so that no-one recognises me and I can be my alter ego lol but am not that brave so will choose something in a style like I currently have but def not a lily savage look.
I hope that you are having a nice weekend away Kath64 - well deserved at the moment I feel.
haz25a - thanks for the advice about eyebrows. I might need to see if I can get an emergency appointment for semi permanent tattoos before Wednesday otherwise I will be sharpening up the eyebrow pencil.
Thanks also to blue ash and seesee for the information in cold capping and the details of the Paxman site. It was good to hear your experience on your first session wasn't too bad seesee and encouraging for the rest of us.
I will be thinking of you Sarah04 on 8 September but I am sure that both Anne and I can let you know how we get on before then.
'speak' you ladies and wish you all a lovely long bank holiday weekend and that the sun shines for all of us xx
Hi Kath64 and everyone
hoping you all enjoy the long weekend. And I echo se_see - the anticipation can often be worse than the actual event.
Fearing the hair loss is very understandable, as most identify with our hair as part of our identity. And again I very much understand the fear of being 'labeled'. It is in our hands whether it does or not. I am trying to change that perception and some of us can do that. It takes some effort, but can be done. Wigs no longer are 'Lilly Savage' like. It is often worth getting one which mimics our hair colour and style. Should it not be exactly the way we usually wear our hair it might be worth seeing your usual hairdresser, who knows your style to have in thinned and cut into you specific style. If it is an artificial hair wig, give it a wash with the special shampoo, dry it and brush it - and it will become a little softer and look more natural.
This is me - post chemo 5 -
If you are cold capping you do not have to cut your hair but it is recommeneded because it makes it easier to manage. I printed off the recommendations for my hairdresser and from memory they recommend slighty shorter than shoulder lengh and layed so that the hair at the crown is about 1 - 2 cm thick. You have to wet your hair and put conditioner on then comb it back with a wide tooth comb.
The aftercare is minimal washing in tepid water and never under a shower, then 6 strokes with a very wide tooth comb. No rollers, straightners, or products. They simply want you to leave it alone! For that reason I wash it once no rubbing then pat it dry, then a couple of squirts of leave in conditioner.
I had my first chemo 16 days ago and have some shedding but have no idea if that is normal or I am going to lose it. I will let you know.
I started with the cold cap this week and no you don't need a hair cut. I'm specifically using it to avoid that. Try the Paxman hair cooling site which will give you more info. It's horrid for the first 15-20 minutes but after that I didn't really notice it apart from getting a bit chilly. I would recommend painkillers beforehand if you are able to avoid headache. And don't forget to take a towel / hat for your head when you leave - if nothing else you'll have ice and conditioner on it. Also get a wide tooth comb / brush and some scrunchies if you will want to tie your hair up afterwards so it's gentle on your roots.
Afraid I don't know about eyebrows. I was just going to pencil them in till I got on a looking good feeling better course
good luck x
Yay, I've done something right albeit by accident. I booked into Parruche too. Happy accident.
Hi Kath 64,
i had had my operation on 30th June and started chemo on 24th August so I know what you mean when you say it feels like a long wait. I'm mostly in the August thread. I was very apprehensive about the start too and not even sure I wanted chemo but my tumour was 10.5cm so it is necessary. I only joined the forums yesterday.
I was a bit scared when I got there for chemo but it was fine and there are people around to chat to though I found one of the other patients a bit over familiar and doom laden.
All the staff are so kind and attentive and you get lots of support with what might happen next. They even phoned me the next day to see if I was ok (I'm fine so far).
Hi Kath 64,
i had had my operation on 30th June and started chemo on 24th August so I know what you mean like when you say it feels like a long wait. I'm mostly in the August thread. I was very apprehensive about the start too and not even sure I wanted chemo but my tumour was 10.5cm so it is necessary. I only joined the forums yesterday.
I was a bit scared when I got there but it was fine and there are people around to chat to though I found one of the other patients a bit over familiar and doom laden. All the staff are so kind and attentive and you get lots of support with what might hen next. They even phoned me the next day to see if I was ok (I'm fine so far).
Joan58- hope all went well with your procedure. I'm defo going to ask if that would be beneficial for me. And yup I am jealous!!!!! I remember when I used to lust after handbags- now it medical procedures. lol. How my world changed after the diagnosis!
Hello Sarah04. welcome.
Kath64- I spent about 90 mins with my consultant on Tuesday. Pretty sure all the others in the waiting room were thrilled. I had a zillion questions about the benefits and risk of chemo for my particular circumstances because the absolute benefit was borderline. But I decided that I would rather throw everything at it now, than regret it at a later date and wonder what if... At least this way I know I have done what I can. What I didn't do was ask practical questions about things like ports etc. I feel another list coming over me for Tuesday!
Sue- I know the area around Brighton quite well. My parents lived in Lancing for about 14 years and I spent many a summer exploring the area. You are very lucky! It's beautiful down there. Thanks for all the explanations.
Blue Ash- Thanks for posting the link to this forum on the other thread. I've just moved to an iPad and it's taking a bit of getting used to compared to my old, very old, laptop. I'm not always that dense- or perhaps I am!
And last but not least....hello Vintage. Thanks for feedback on your experiences to date. I am hoping that once I actually get started the anxiety will subside a bit. I'm going for my first look at wigs today. And I'm dreading it to be honest. I'm getting mine from Glasgow too. Where did you go?
Phew. so many questions so little time. If if missed anyone who has replied sorry.
It's great to know there are others out there. Although I d wish with all my heart that no one had to go through this experience. Off shopping this afternoon not just for the wig but for the rest of my survival kit. And may just have one, or maybe two cocktails- for purely medicinal reasons of course! But will wait until after I've picked my wig- in case I end up with something a la Lily Savage😂
Thanks for reading! Hope you all have a great Friday.
I have just popped in from the August thread. I have had one round of my 6 TCH and am also using the cold cap to try and save some hair. If you are cold capping take some pain killers before you go to the hospital to take the bite out of the cold.
Honestly the anticipation is far worse than actually having the chemo.
I had a PICC line right from the start - they mentioned it at my pre-chemo chat and I accepted. I thought they did that for everyone but have since discovered that I was very fortunate. Most people only get offered it after their veins have suffered a bit. The problem being that we can only have chemo in one hand - if they can use both hands then they just alternate and your veins are fine.
My worst side effect has been heartburn and they have since given me omeprazole because Gaviscon was not strong enough.
Plus stock up on claritin hayfever tablets because:
I am from Northants and my treatment commences at 3pm on 31st so I will def be thinking of you at 10.30.
I have had a sentinel node biopsy and my consultant advised that it would be useful to have a portocath fitted in case the chemo nurses cannot get veins for my treatment.
Basically the portocath is a thin, soft tube that is about 1-1.5ins in diameter that is inserted just under the skin on your chest. In effect it is like a tiny canula under the skin. This will stay in place the whole time that you have chemotherapy and the nurses will use this to take blood tests and administer the chemo treatment. It saves them having to stick needles into you anytime you need tests or for the chemo. So in that respect you are definately missing out and should be jealous lol! Ask your consultant about one.
Ive also been told that I will automatically receive medication to keep my white blood cell level up (as much as possible!) and that I will receive steroids at the same time as the anti-sickness treatment which will also help with any sickness. Again, if you havent been offered these perhaps ask?
I am also an out-of-the-bottle colour (sort of brunette) but maybe the new 'bronde' trend will suit us both. I have decided to give the cold capping a go. My decision was made mainly after meeting another lady who was on her 3rd round of treatment and still had 90% of her hair and was coping well. Who knows how I will get on but im going to try it anyway (wig just ordered as back up though ) . Im off nowto fill my body up with foot and water before the 11.30 cut off point when I will be 'nil by mouth' prior to my proceedure. Speak soon ladies xx
Anne - you are in Scotland - I am at the opposite end, being treated at The Royal Sussex in Brighton in Sussex.
As to your question re a portacath - there is a number of ways chemotherapy can be administered.
In many cases it is administered via a cannula placed into a vein on your hand or wrist. This means you have to ensure you drink oodles of water beforehand to make sure your veins are nice and big to be cannulated. If you have not already - you may wish to scroll down to the first post. There are links to cover specific bits as to chemo prep, etc.
Please be aware - cannulation MUST NOT be in the arm on the side you had your operation and sentinel node biopsy, because of lymphedema risk. This should have been discussed with you. If not, let me know and I'll post an appropriate link, which will give you the information you need. If you are going through chemo pre operation, it does not make a difference which arm you use.
FEC - the E in the FEC can 'burn' your veins.
For many a PICC line is installed from the outset to avoid damaging the veins in the arm, where treatment is administered. It also makes it easier to have the regular bloods taken, as well as anything else, which may require cannulation as you go through your treatment.
Others may have a Hickman line and some a portacath.
Much depends on your type of treatment, your age and also other health issues you may have.
This link explains the differences much better than I can - http://www.cancer.net/navigating-cancer-care/how-cancer-treated/chemotherapy/catheters-and-ports-can....
A PICC line seems to be the preferred option generally for administering chemo - so if you can and it is appropriate for you - you may wish to ask for one to be installed.
I now have a PICC line and it is a god sent. As I am on 6 x FEC my vein burnt out and could not longer be used for treatment, I wish I had taken up the offer of a PICC line at the outset, but did not know what would happen to my veins. So I learnt the painful way, lol.
As to which questions to ask at your pre chemo appointment - there are no set questions. A nurse will take you through general information and advice you need. Your questions are likely to arise once she shares that information.
Hi Joan 58,
Shame we had to meet like this but it is good to have support while we go through this.
As others have said, I just want to get started now. Cause in my perverse logic the sooner we start the sooner we get finished. My appts at 10.30 on 31st. I've decided not to cold cap as my hair is blonde from a bottle and the roots would just drive me crackers! May as well take look at this as a chance to get it to a more natural state - 50 shades of grey!
Portocath? What's this? And why? I asked the Oncologist a zillion questions but this wasn't mentioned.
I'm feeling left out that I haven't been offered this. Lol. should I be jealous? Do I want/need one of these?
Sue- you mentioned asking questions of the chemo team? Any suggestions for those of us who are clueless (aka me!)?
So September 16 ladies, where all you all based? I'm getting my treatment at Wishaw General in Scotland.
Hello ladies - I too start chemo soon - on 31 August to be precise just like Madmac22 so it will be very interesting to see and share experiences with you. I am having a Portocath fitted tomorrow and will start the first of 6 cycles of FEC-T followed by radiotherapy. This is all very scary but at least we are now approaching the stage when we kick this BC out of our systems - go us!
Hi Kath64 and Madmac22
Welcome to the September chemo thread!
It is very understandable being apprehensive about chemotherapy and at a guess you may feel quite nervous on the day you start. When you have your pre chemo meeting, please ask the nurse as many questions as you can. Even if it seems trivial - having your questions answered is very important.
You may read about the many side effects and find it rather scary. We are all very different - and although possibly having the same treatment - the effects are likely different for each and every one of us. Some hardly have any, others may struggle a little more. Thankfully your treatment team, once knowing you are struggling with something specific can adjust your accompanying medication - to make things easier for you.
For those of you, who are not considering the cold cap, my tip is to have your hair cut as short as you are able to cope with. Many women seem to have unpleasant headaches and a very itchy scalp about 10 days after their first treatment, if the treatment side effect is hair loss. It seems that when the hair follicles shut down - the longer the hair - the more the stress to the scalp. Hence the headaches.
Please feel free to ask any questions you may have - I shall do my best to answer them.
Hi Kath 64.
i know that feeling all too well. I had my diagnosis confirmed on 8th June and my operation on 14th July. And I really thought that everything would move much, much faster. I've found the pace really frustrating. Which I think is why my Oncologist suggested four cycles rather than six. He said in my circumstances the difference
to my prognosis was negligible. But everyone is different.
i'm apprehensive too but found lots of the tips and suggestions from others like Sue really useful and I'm getting my chemo caddy/survival kit ready.
And I agree that its good to have people going through similar experiences to virtually chat to and compare notes.
Hi Sue and Ali,
Greetings from not so sunny Scotland.
I'm new to posting too so fingers crossed. I feel a bit conflicted about where to post as I am actually starting my first chemo on August 31st but hey, what's a day between friends. I just figured I might be a bit behind some of the August people and as I haven't yet had my bloods done I should err on the side of caution in case my date changes. But I will confess that I've been lurking reading posts for months now.
Saw the Oncologist today. And he was really lovely and very positive which seems like the first time in forever that I haven't gone to an apt and came out with more bad news.
Plan for me is 4 x TC at three weekly intervals and then 4 weeks radiotherapy.
You have posted your post - so all is well.
It is great that you find the links of help - hopefully by just clicking on them you should be able to get to them.
There will be more joining the thread over the next few weeks and you can then share your experiences, etc.
Are you on FEC only? And if so for how many cycles?
As no one has started a September thread yet and there are some of you likely to start chemo in this month, it seemed appropriate to start this thread off. Hopefully it will become a lively and supportive thread for all of you having to go through your various regimes of chemo. Please do not be too worried - you will all get through this. For some it may be harder than others, as side effects tend to differ from person to person, even if on the same regime. Sharing your experiences will help others, even if you never see them posting. It is also a great place to share your frustrations, ask questions, laugh, cry, rant and rave.
Any side effects you do get please note them down for your treatment team. If they become too challenging and you advise them accordingly, they usually tend to adjust the accomanying medication to make your journey easier. Most side effects experienced in the first cycle with stay the same, as long as you are on the same regime.
Here are some helpful links for you to prepare and support you.
Chemo preparation -
If you do not have a PICC or similar port installed and you are on FEC throughout - you may wish to ask for one to be installed. FEC is quite tough on your veins. This thread may be of help though for all of you -
And this one covers everything from food to make up and wigs - you may have to explore in more depth to find something specific you are looking for -