Hi everyone, I am due to start my treatment on 7 July, I am seeing the Nurse on Friday of this week when hopefully I will get to know more about where the treatment is to take place and more info about the same. I am very apprehensive and worried, but reading everyones comments does make me feel better. I do agree that it is the unknown that is so daunting. I too am having my hair cut very short as the first stage of coming to terms with possible hair loss!!!
Hi everyone, I am due to start my treatment on 7 July, I am seeing the Nurse on Friday of this week when hopefully I will get to know more about where the treatment is to take place and more info about the same. I am very apprehensive and worried, but reading everyone’s comments does make me feel better. I do agree that it is the unknown that is so daunting. I too am having my hair cut very short as the first stage of coming to terms with possible hair loss!!!
Mad hatter and Bookworm, I wish I had the courage to get my hair cut really short before treatment like you are planning. I am just going to hold on to it and enjoy it a little while longer. My recent holiday in the sun highlighted it nicely and am reluctant to say goodbye. I think I’m in denial ! I soooo don’t suit short hair. wish I did. In case I loss all my eyebrows I went today and got semipermanent eyebrows done. Currently looks like I have 2 caterpillars on my face lol. But know they will look ok once they settle down in a day or two. Can’t get my head round the head hair loss though ?
I’m really struggling with the hair thing too Alex. I had booked to have it done today before I knew I was having port put in so think I might postpone. My hairdresser is a friend and knows the situation. All the ladies having treatment that I met yesterday were so smiley and upbeat. I’m so worried I will let the side down and will be a wailing mess in the corner!! Xx
Now Bookworm, let’s have no more of this “letting the side down” talk. Because I don’t believe there is anything anyone can do to let this side down. Even if they drag you in there kicking and screaming (which they won’t of course!!) and you spent the whole session in tears (which you won’t - the nurses are well trained at putting people at ease and making conversation), but even if this is how it went then who is to say that is not the right way to act. In fact, that seems a perfectly understandable reaction to the whole thing to me!! But I do believe you will be overcome with a feeling of calm acceptance as it approaches.
Anyway, I had a fairly restless night but have woken up feeling pretty good. The headache I had overnight seems to have eased, and the anti sickness meds continue to do their job on that front. To everyone worrying about hair loss. I’m sure it is the aspect of treatment that worries us all. It is the only side effect we are guaranteed to get after all. And the one that has such a huge impact on our self esteem. I didn’t cold cap so am waiting for the inevitable then. I’ll report back on how it all goes when it happens. Just hoping I don’t freak out in front of the boys, as I’m trying to stay really upbeat about that aspect for them so then don’t get bothered about it!!
Good luck to Nellie and anyone else starting today. Let us know how you get on xx
That really made me smile Taran. Thank you. No more letting the side down talk I promise!! I will bear this in mind when they drag me kicking and screaming into theatre later today for this port! Really encouraged by how you’re coping and the sickness meds sound like they’re doing their job. Even though I am fretting about the hair thing I met a lady yesterday having treatment (4th cycle) and she hadn’t cold capped but had the most amazing wig and she looked bloomin brilliant.?
Nellie, good luck for today. Hope you were able to get a decent enough sleep to prepare you for today. And also to anyone else starting today too. X
Taran. Hopefully your boys will take it all in their stride about your hair loss. And as you say, if you appear to do so and don’t let them see you upset, they sd hopefully accept it as no big deal. And at the end of the day, our hair will grow back. I keep having to remind myself this when I start freaking out about it lol x
Good luck Nellie, hope your feeling ok and Bookworm it will be ok, not where you would want to be today but you’ll be back home in no time. I managed to get a good nights sleep last night but have a really red face today. The headache has finally gone and the sickness meds still working though my mouth has a slight odd taste. Just debating on how the weetabix will taste but will give it a go. Taran have you got yourself a wig? I got one last week and it does look very natural but think I will probably go with the scarves and hats I’ve got as well as I think they will be more comfortable. Might save the wig for special occasions. But it will be different for your youngsters. xx
Bella Boo, glad you’re doing more or less ok, nothing you can’t handle. Hope the weetabix goes down ok. What’s the red face all about? Were you told about this side effect? Oh the joys lol
X
Hi Bella boo, the red face is probably the steroids as they can cause flushing. I remember having the same when I had steroids during pregnancy. Hopefully will settle once you finish taking them. I have got a wig ready but I’m not sure how much I’ll wear it. It looks quite nice but I’ll probably just throw a hat on most of the time and save the wig for best!!!
Bookworm, good luck for the port today. At least once that’s done you can relax a little bit that it’s sorted.
Alex, you are right. Hair will grow back. Hopefully cancer cells will not!!! And it will all be worth it. I refuse to let hair define me. Or any of us. We are so much more than our appearance and must never forget that in all this xxx
Hello July starters
I am cautiously reading the thread as I start chemo on the 8th. Cautiously as I am finding it hard to face it and what it will bring. Have done nothing to prepare. Had MX and ANC on 1/6 so still trying to find some sense of normal from that while waiting for what feels like impending doom. I know that everyone’s experience of chemo differs and I may well be fine - to be honest it is less the chemo that I fear, it is more the full horror of this awful life and happiness robbing disease. Phew. Sorry for being so down. Most of the time I put a brave face on. Think I need to sort myself out some counselling! Am also beating myself up because I feel I should be making the most of these two relatively fit two weeks to get my house and garden sorted when in reality I just want to curl up and be looked after. I have great family support and good friends so I know I just need to give up my usual Ms Capable-on-top-of-everything-looking-after-everyone-else and chill but it doesn’t come easily, no doubt not helped by my deep down refusal to accept my BC lot. And it is pouring down outside!
Acutally feel a bit better now I have written all my misery down. I may even face up to ordering some fetching headwear!
Hi Oncewild, I’m glad you feel better for just writing it all down. Sometimes the biggest challenge is protecting our loved ones from our fears and emotions. Because we still want to be strong for them, even when our world has been turned upside down. And that’s what is good about this place… you can say all that stuff and not have to worry about upsetting the people around you. I wholeheartedly agree, it is not the treatment that causes me the most distress, but the uncertainty of the future. It is something I try not to let my mind focus on too much. Although sometimes it does take over. Luckily I have been blessed with some amazing friends to turn tonin those dark moments (some only met since embarking on this journey). I’m really glad you have great support around you, I couldn’t manage without mine. And I doubt I will ever be able to thank them enough. But to echo Sue, you can always private message anyone on here to chat if that would help. Sometimes you need to speak to someone who is going through it, no matter how wonderful your friends and family are. xx
Hi Everyone,
Recognise a few names from other “newly diagnosed” and “surgery” threads and some who I’ve not met before.
I had my Pre Chemo assessment today. To be honest, it was a bit worrying. My chemo unit, well it’s actually called a Cancer Centre, the Beatson in Glasgow, is huge and always mega busy. The clinic was running over an hour late, the staff were shortstaffed and clearly under pressure. The nurse doing my assessment was really lovely but there had been some important things missed, e.g. She didn’t know what pre med drugs my oncologist was giving me, had to leave the room to speak with him twice, so bit of a lack of communication there. I had to remind her that I needed my bloods done twice and she almost forgot to give me my presecription, oh and they have totally changed all the dates for my chemo and herceptin with the exception of the first one, it was all rather “flustered” and I don’t feel very confident about starting my chemo on Monday. I asked about steriods and was told I would just get them on the day, then she changed her mind and said “Sorry, you’re right, you should be taking them the day before you start”, Onc had apparently changed his mind re anti-sickness meds since we last met and they were only going to give me metaclopramie (which I already take on a required only basis). I have a severe phobia of vomiting and they know this, or should do as I’ve told them enough times. Anyway, after almost 4 hours, left with my steriods for 3 days and some lorazepam to take Sun night and Mon morning. Will hopefully get my anti-sickness meds sorted out properly on Monday. They were also supposed to be tapering off my steriods so I’ll need to get that sorted out as well.
Like I said, the nurse really was lovely but so busy and stressed that she wasn’t on top of things. As I have an Anxiety Disorder I get panic attacks when in confined, crowded places, so they have some single rooms on the chemo ward and I’m booked into one of them (hopefully). They’re just like normal hospital rooms with a bed so hopefully the lorazepam will let me sleep through my chemo (I wish!), I’ll be high as a kite with anxiety!
I’ve heard some of you say that the Nurse stays with you during your chemo, this isn’t the case as my hospital as they isn’t enough staff, but I’ll have a buzzer if I feel unwell. Thankfully, my Mum will be with me too.
I’ve to take 8mg (4 2mg tablets) twice a day so 16mg daily Dexamethasone for three days, before, during and after chemo. Is this a standard dose does anyone know?
I’m having four TC (Taxotere and the Cyclophosamine ??spelling) so my side effects may vary from the majority who will be starting off with FEC before the big T!!
Well, I’ve had better birthdays and this time next year all my treatment should be over so I can have a double celebration then.
Good luck and Best Wishes to all of you who are anxiously waiting to start and those who going through treatment already.
Hazel. x
Hi everyone, thank you all so much for your kind words.
My 1st chemo went ok! I did have ‘sinus pain’ with the Cyclophosphamide and pain up my arm, uncomfortable but ok -they slowed the drip down which helped. Came out with 2 bags of meds! So decided to make up a spreadsheet with the tablets, dosage and times - sad I know but it gave me something to do as I just felt weird just waiting for some reaction to happen. Started to feel woosey and nauseous a bit later which hasn’t passed. Have taken the anti sickness tablets as required, drank 4 pints of water, had 2 ginger biscuits and had griping pains but haven’t been. My wee is virtually back to normal colour yay! Don’t feel tired at all. Managed a gentle stroll after tea which was nice. A little tearful earlier on but the emotion needed to come out. Not sure how the night will pan out. Due to take 2 more anti sickness in an hour. Do hope I don’t wake up feeling sick in the night as I haven’t got a tablet to take until morning. Plus my legs really ache! I do have fibromyalgia but haven’t had a flare up for a few weeks and I don’t have any other symptoms of it.
Anyway sorry to drip on, but I really didn’t think I would feel quite as nauseous, hopefully it will pass soon.
All the best Sue for tomorrow. Taran hope your day has been a bit better. To all you ladies thank you for your support.
xx
Nellie, no need to reply but just want you to know I am thinking of you and hope you feel better soon, I do hope you get some sleep and speak to the unit tomorrow to see if they can help you out a bit more. Sue I hope it goes well tomorrow and your veins hold out. Taran if you get chance to read the thread hope you are doing well. Hazel happy birthday if it’s today, just think next years will be better and hope things get better at the unit for you. Just realised there’s lots of ‘hope’ in this message but we’ve got to hold on to something ? Xx
Nellie55, Hope you feel better tomorrow and don’t have a rough night. Hugs. x
Nikki49, Thanks for the info re steriods, I hate the b****y things, I’ll be bouncing off the walls!
BellaBoo - Thank you, yes it’s my Birthday today, 48 years young! Double celebration next year!
Madhatter67 - Try this link for headwear, it has some discount codes.
Sorry if I’ve got some of your names wrong, my memory is awful at the best of times.
Best Wishes.
H.x
Sue - Good luck for tomorrow.
Hazel.x
Just catching up on here a bit. Have given up on trying to sleep after lying awake the last 2 hours again. This is going to be a vicious cycle I think . Was so tired last night I was in bed early, but then wide awake at some ridiculous time. Luckily other side effects still seem quite mild so far. Have done aches from the neulasta injection yesterday (which is also making it fairly difficult to get comfortable to sleep) but apart from that and the tiredness nothing major to report.
Nellie, I really hope the nausea has settled for you but if not get onto your unit tomorrow for them to prescribe something else. They really drummed into me that noone should have to put up with nausea/vomiting these days. A few tweaks to your meds should hopefully make a big difference to you.
Sue, thinking of you today. Another one crossed off very soon!
xx
Thanks so much for that AngeNut. I’ve had a port put in under the skin in my chest so its a bit different to a picc but similar principle. Not a pleasant op but I’m home now and it will save my veins in my only usable arm. Well done for being back driving. Makes a difference doesn’t it. My BC nurse said day 7-10 are the toughest days but everyone is different. You’re right though. As with everything it’s the anticipation that’s so tough. I’m dreading Tuesday but also I think it will be a relief to get started. Hope you feel a lot better soon xx
Good luck to all new starters. I had my first session on 22 June and am pleased to report, had no major side effects. I was panicked beyond panicked before treatment but it is true what they say … … anticipation and fear is worse than reality of it 
… so take a deep breath, go for your treatment … and you are that step closer to getting better ??x