Hi Ladies
Been to visit the Day Unit today and looked at the Cold Cap, unfortunately my veins are not great so need a PICC line fitted, no appointments before Monday which was my start date for treatment so have put it back to 18th August and will get the PICC line fitted next week. Has anyone else had a PICC Line??
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Hi all,
I’ve just seen my oncologist for the first time today and will be starting chemo in a couple of weeks. I’m 48, had single right mastectomy and immediate reconstruction and lymph node removal in June - 41mm G2, ER+, PR+, HER2 neg, 3/6 lymph nodes +. I’m having 4 x EC every 14 days and 4 x pactlitaxel every 14 days.
I have no idea what to do about my hair and just keep going round and round. Since I stopped my HRT my hair has been misbehaving - it’s curly but just going straggly and already falling out loads, probably from the stress. I’m not sure I want to add to the stress by messing with the cold cap. Is anyone else not cold capping?
I think that’s all for now, I feel so anxious and am grateful that I can share this journey with you all! I’ve read through some of the previous months and it is so helpful.
Good luck to those who have started and are starting soon! Xx
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@dianne3 Yes, I had my PICC line put in last week and chemo started yesterday. It is the much better option and it won’t take you long to get used to it. First needle is a bit nippy, but then you don’t feel a thing. Quick x-ray to check it’s positioned properly, and you’re done. Weekly dressing change and check from district nurse. You’ll get all your bloods done from it too - so much better than repeated needles and cannulas x
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@toad the unicorn wig sounds interesting! When I went wig fitting, I think I got too stuck on trying to find something JUST LIKE MY HAIR which of course is not going to happen, so I’ve started now thinking of going a bit different & have also got in some hair wraps. Also got my eyebrows done as I have great brows and was worried about how I’d look without them haha! Also have to get my son’s girlfriend to show me how to do false eyelashes, just in case…
I’m of the same mindset as you, I started with chemo (first session yesterday) and after this I’ll have surgery and radiotherapy. At the moment feeling positive but realistic - it’s going to be rough but in around 6 months time I should all be done and hopeful for a good prognosis by the end of it!
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@scubacat the nerves are natural, all very valid feelings to have. I had my first EC yesterday and it went ok - I know we’re all different and each person’s experience is different. The worst thing about for me was the cold capping unfortunately.
I have anxiety, and to help manage that I focus on what I can control. So for me, I can’t control anything to do with the treatment, how they give it, what side effects I may have etc. But I can make sure to try to ease as much of that for me as possible. So I focused on what foods I could eat to help, making sure I have things with me during the session to help distract me, focusing on hydration, reaching out to my support, movement & for me some meditation. Those are my sort of rules anyway, I’ve just tweaked for this awful situation!
And most importantly, being compassionate to myself and not putting pressure on - this is an awful thing to have to deal with. We need to be kind and compassionate to ourselves as we navigate whatever is coming.
Good luck with the first treatment. Check in and let us know how it goes 
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@dianne3 Hello 
Hope your visit to the unit went well and good luck for Monday.
I really don’t know what to do about work. I have a physical job and although I could be office based for a bit, the risk of picking up some lurgy is high. I’m meeting with my boss tomorrow to come up with a plan. I could WFH, but it would be a totally different role!
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@louise15 I’ll be getting my daughter to give me a false eyelash tutorial too 
I have short hair as I had it all cut off when it started to get very grey and it was easier to stay on top of colouring it. I haven’t had long hair for a while and thought going for a short, similar style was boring, so I went completely the other way and got a long unicorn wig 
I have got a shoulder length, brown one with a fringe too as I’ve never had a fringe due to having curly hair! That will be my ‘normal person’ wig.
I’ve got some lovely, bright head wraps too 
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Hi, yes i have a picc line, its worked quite well for me. I have sensitive skin so had to try a few dressing until a suitable one was found. Don’t be afraid to tell them if you get any issues. Get a Limbo cover for showering. I would have a picc line fitted again if i had too, it’s not perfect but i don’t think my veins would have stood uo to canula’s repeatedly! All the best for your journey
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Hi @toad it is difficult to plan as you don’t know how your body will react to the treatment. My philosophy is to promise nothing and deliver something. My employer has been really understanding and I think I put more pressure on myself than they do, perhaps it’s me craving some form of normality through this weird journey, hope your meeting with your boss goes well xx
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@sassy3 That is encouraging, hopefully the District Nurse can come and do the flushing out etc as they are building a multi storey car park at my hospital and the parking is a complete nightmare 
@moominmama1 Thanks for this encouraging account of your experience having a PICC line fitted, think it will be the best thing for me, I’d never really thought about my veins but now on reflection they are not visible at all so would be difficult to find xx
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@toad I’ve always had longer hair so the hair loss is going to be rough, but I keep getting told I have a good face structure for short hair so going to use the regrowth as a chance to experiment with shorter styles which I never would have done before - still a ways off for that of course but trying to look for positives wherever I can haha!
I’ve still not settled on my wig, the hair salon I went to is ordering some in for me in colours similar to my own so we’ll see how I feel with those. Been considering trying out a fringe style also, so may take a leaf from your book!
@sunshine-smile I tried the cold cap at my first chemo on Tuesday. For me, it made the experience worse but I’ve read so many accounts of people who have tolerated it well and it’s helped minimise hair loss. It just was so uncomfy for me personally and added extra stress. I’m about 95% certain I won’t bother next time, but still that wee part of me that wants to try.
I think this forum has been so helpful for me reading everyone’s stories, seeing how people are getting on, seeing other’s fears, getting tips for things. I’m so grateful for it too x
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Hi Dianne3, I was planning to work until my surgery in June and then play it by ear, but I couldn’t concentrate in my busy role so have been off since end of May. I can’t work from home and don’t want to be travelling to London on the trains so I’ve told work I won’t be back until my treatment and recovery has finished. I’m very lucky as I get quite generous sick pay and appreciate not everyone wants to or can stop working.
Is anyone in the south east, Kent way?
Hi louise15, I was the same with the wigs, trying to find something just like my own hair which was definitely not happening! I’m going to book an appointment somewhere and try on some different styles and see what works.
I’ve also purchased some turban headwear and hairbands from a great small business called Eadiechops - her stuff is great and very comfortable.
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Hi @louise15 I think that is what I’m worried about, the added stress and feeling too uncomfortable. I’m not sure where you are, but at my hospital you can’t have anyone go in with you to the chemo suite, so if I start to panic or worry I won’t have my usual support around me. Plus I’m not sure I’m even that fussed about saving my current hair, but the worry if it doesn’t grow back or if it grows back thinner than now is playing on my mind!
Hello,
I’m recovering from a SMX which I had 3 weeks ago.
The initial plan was radiotherapy and hormone treatment but the results from surgery weren’t great - it was bigger than it showed on the scans, in four lymph nodes and changed from Grade 2 to Grade 3.
So now, I’ll need chemo, plus a full axillary clearance. Terrific 
I’ve got my first appointment with the oncologist today? What’s likely to happen, do you know?
I assume I’ll get some dates and I’ll be starting chemo in a couple of weeks.
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Hi @preferablywithfood, I had my first appointment yesterday and even though I knew what was coming I found it so overwhelming. The oncologist went through the overall plan but thankfully just concentrated on the chemo. She went through all of the possible side effects and made sure I understood before completing the consent form and confirming next steps. Make sure you have a list of any questions you want to ask.
It’s just so hard when the plan keeps changing! I was similar to you - initially a lumpectomy, node dissection, radiotherapy for 5 days, then hormone treatment. It then became SMX with implant, chemo, radiotherapy for 15 days, hormone treatment, targeted therapy and bone injections alongside injections to put me into menopause if the chemo doesn’t! I’m a nervous wreck
Oh we sound exactly the same! I’ll need chemo now, more surgery, hormone treatment, targeted therapy ( I can’t spell it - that thing that begins with A), and they’ve already mentioned 15 days of radiotherapy.
It’s relentless isn’t it?
Thanks for telling me what to expect today!
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@preferablywithfood It is a bit overwhelming going through your whole treatment plan. I plotted the dates on a spreadsheet when I got home, 3 cycles of EC starting 18 Aug 21 days apart, 3 cycles of Paclitaxel once a week in 3 weeks cycles etc etc, it all didn’t make sense:thinking:
. After plotting it I can now say the EC and Paclitaxel part if the treatment will be over by Christmas which seems easier to come to terms with rather than Cycles, days , doses etc. The Consultant I saw also said we could go through it again at the start of each Cycle so will be taking him up on that. Hope you are all having a good day xx
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