ALittlePixie, I was given some QV cream at my first rads appointment - was just told to use that. You will probably get something similar tomorrow. Good luck tomorrow - will be thinking of you. Compared to chemo rads is a breeze ❤️💪🏻 try not to worry xx
Thanks for the tips about the hair Gaby / ALittlePixie ... not heard about shaving it either. I’ve been using lush red shampoo bar as I had seen it on another post. Think I’m just too impatient - I’m expecting it to work miracles 😂
After another 45 mins delay to rads appointment I managed to reverse into a parked car trying to leave hospital car park today 🤬 ... just what I needed. Left note on the car but there wasn’t much damage ... hoping they don’t contact me 🤞
Gosh, it keeps posting before I've finished. Must be my fat fingers typing!! I also write lists Gaby....even the little things tire me at the moment, but you're right, it does help to write stuff down and feel like you've got stuff done.
I'm a little nervous about rads tmoz. I'm going up on the train as it's too far for me to drive at the mo, plus the weather/roads are rubbish at mo. I've had my Stu with me to all my treatments/appts since I was diagnosed in June, so it'll be weird to start this part without him.
Right, gonna try and sleep and not think too much about tmoz.
Night all xxx
It posted before I'd finished!!! I'm not sure if it's helping or not but my hair is def growing on my head! I still have no eye brows or lashes tho.
Thanks Gaby. Yeah I'm the same about not bothering to go behind the curtain. Ooh I might ask about shaving my head again...I've not heard that, but I'll ask.
Lisa - thanks for the tips. I'll go bra-less and drink lots. Any particular cream I should use to moisturise with? For my hair, I've bemusing Grow Growth Serum from Grow Gorgeous range
Sounds like we're all having a bit of a rubbish time! I'm feeling quite weak this morning, so am just reading and watching telly. I have made myself a to-do-list, but it just includes things like taking the rubbish out and washing up - just to give myself the feeling that I am doing something useful
Jacqs: I'm so sorry to hear that things are not very easy at the moment. Having to deal with a new oncologist doesn't help in all this, I'm sure. But hopefully she will be keen to get off to a good start with you.
Lisa: My hair has also started to grow back very slowly - it's nice to feel a bit of fluff, even if it's patchy. My chemo nurse recommended that I shave this first lot off to encourage growth. I shall speak to my hairdresser to see what she thinks. Has anyone else had this advice?
LittlePixie: Hope all goes well with your rads. Sounds like you've got all your accommodation well sorted - hopefully that will make the whole experience a bit easier. About showing our boobs - I regularly forget to close the curtain when I have to undress at hospital and have had some funny looks about that from nurses and doctors, i.e. don't you want a bit of privacy?
Hope everyone gets some well-deserved rest today.
A Little Pixie - sorry to hear you’ve been feeling so tired. I would agree that at times you’re body doesn’t feel like your own. I too have to have a second op to replace the implant I lost to an infection but the surgeon won’t do it till end April / early May. Good luck with the rads. Hope it doesn’t take too much of a toll & that you can get through it without any damage 😘
Lisa - hope you enjoyed your lunch out. Sod the diet & enjoy 😉. I might take your advice given to Gaby about injecting into the thigh. I’ve got another 2 months of blood thinning injections to go & my tummy is so bruised, it’s hard to find somewhere to do the bloomin thing.
Gaby - hope you’re doing ok - it is exhausting and the only thing is rest as and when needed to get our strength back. Glad your daughters interview went well & good luck to get for the next ones.
I went to see my oncologist today, only to find out she has left and gone to another hospital, so saw a new one & I was her first patient. Tad frustrating to say the least. Bisphosphonate treatment delayed because my bloods didn’t come back from lab in time. I went to hospital twice last week and they couldn’t get blood because my central line wasn’t working and they were unable to find a vein that didn’t collapse, so had to go back very early this morning. May or may not have treatment tomorrow & will now have to wait another 3 weeks before they take central line out. So have come home, put pj’s back on and am going to veg out on sofa watching Luther.
love to you all 💋
I went to bed early last night - completely shattered and good for nothing! Am feeling ok-ish this morning, but am defintively taking things easy.
Lisa: thanks for the tips about tummy vs. thigh. I'll see how I go with my tummy - got enough flab there so will hopefully be ok. Hope your rads continue to go well. Nice you've got female nurses. I think I'd feel more comfortable with them as well, but will just have to accept whoever is in the room I guess.
LittlePixie: lovely to hear from you. Sorry you're still feeling so lousy. It's probably accumulative. Our bodies have had so much to put up with, it's no wonder they're protesting. Good you've been able to sort out accommodation in Carlisle. Hopefully that will make things less exhausting. Are you staying with friends or in a hotel/B&B? I've got to travel in to Guy's every day, once I start my rads in Spring, which takes me about 45 minutes, so not too bad. Though I think I shall get completely fed up with that journey, as I've been told that depending on the outcome of my MRI and op, I will need 4-6 weeks of rads. Good luck with your rads on Thursday.
Take things easy and have a good day everyone. Lots of hugs
After last week's delay and a few minor problems with a blocked picc line, I finally had my penultimate EC session this morning. I'm feeling very sleepy already and have been sent home with the usual barrage of pills to talke over the next three days. Also have 5 syringes, which I will need to use to inject myself with from Wednesday onwards to support my neutrophils. It was really good to hear that those of you having to do something similar are coping well. I practised on a small rubber cushion on the ward today and it seemed very easy - however, let's see what happens when I'm faced with my own bits of tummy!
Lisa, hope your radiotherapy is continuing without any major problems. Did you get a male or a female nurse to position you? I've read a few posts elsewhere on the forum of women who've had male nurses and initially felt a little uncomfortable about that, though I think many of us are by now so used to whipping off our clothes in front of nurses and doctors, that this is probably not a major issue?!
Pulapula and Jacqs - hope you're both doing ok.
My daughter's interview last week went really well. She's got another 4 over the next couple of months, so fingers crossed. The only things I'm tearing my hair out (what hair??) is that she procrastinates (apparently that's a sign of creativity - really!?) and has just met a boy at a party who may be taking on boyfriend status - great timing that, with interviews, A-Levels and her operation for Scoliosis comgin up in the summer. But, I'm trying not to "nag" and just hope, that she gets through everything in her own, inimitable way
It's so good to hear that you're starting to feel less tired - what a relief that must be. I'm rather fed up with being tired all the time and for no particular reason (other than chemo of course!). Also very glad to hear that all is good with your ribs. I think we all have a tendency now to worry about our bodies. It's not surprising of course, but I do hope that this will ease a little with time. I used to see my GP once in a blue moon and would avoid taking anything other than paracetamol/ibruprofen, and now I just swallow any old horrid drug that is handed to me (and without reading about possible side effects) - anything to get rid of that ghastly lump!
Thanks for the tip about OHs - mine seems quite keen to help, but I really don't fancy that. a) he has no clue about anatomy (he did classics rather than biology at school ) and b) he is quite a drama-queen when he has any injuries, so who knows how he will react when he has to handle a syringe!
I'm driving my daughter to an interview this afternoon. Once I've dropped her off, I shall settle down in a cafe with my book and a nice tea & cake (I'm not going to worry about my weight until I've finished chemo ).
Hope your meeting with your oncologist goes welll next week, Jacqs.
Its been a while since I posted but I still want to keep in touch to see how you’re all doing. I finished my chemo 5 weeks ago and could not believe how tired I was towards the end and for a good few weeks afterwards, but am glad to see I am starting to feel more human again.
I do still have to inject myself every night with fragmin for blood clots - i’ve got another 2 months of doing that. My tummy looks like a bruised & lumpy pin cushion and it’s getting harder to find a space to inject that’s not battered n bruised. BUT you do well not to let your OH anywhere near. Mine was very keen to help out but I end up with more bruises cause he’s none too gentle.
I had my sore & swollen ribs looked at last week - nothing sinister happening and apparently all normal after a double mastectomy, so hopefully will ease in time.
Next week is my 1st meeting with oncologist since the end of chemo followed by my 1st bisphosphonates infusion. Feeling little nervous because it’s a new drug again, but can’t be as bad as chemo.
Thinking of you all - stay well.
Glad to hear you managed to give yourself the injections, that's encouraging. I think mine are supposed to increase the production of neutrophils through the bone marrow.
I was so useless this afternoon, that after I had posted my last message here, I decided to close my eyes for a few minutes - and woke up 90 minutes later! I felt much better after that unplanned nap
We're getting a female and male kitten, both beautiful little tabbies. Thanks for the tip about letting them out of the basket one at a time when we get home - I shall be on the alert! We all miss our old cat and are really looking forward to having the kittens. I agree that cats can be fantastic company, when they choose to. I have always found that they are particularly good at knowing instinctively, who needs a little cheering up and often used to encourage our cat to distract or comfort our children. Our daughter is sitting her A Levels this summer, so I think the kittens will have their work cut out to cheer her up and provide comfort when things get a bit tense.
I've got chemo/EC tomorrow - really not looking forward to the SEs and am assuming that I will be out of action for a week at least. I am feeling increasingly tired and less robust anyway, i.e. less able to cope with the SEs. Walked to the hospital for Picc Line and bloods today and felt completely shattered when I got home, and that's without having actually had any chemo yet. Spoke to one of the lovely chemo ward nurses today, who told me that increasing weakness/tiredness is very common and that I will need to rebuild my energy and strength slowly when all this is over. Can't wait!
Gaby, glad you had such a lovely time with the kittens yesterday! What have you chosen? I know dogs are good company,but cats can be too! (I'm trying to type this with Oscar making a fuss of me because I've been out for a few hours! ) One word of advice, don't let them both out of the cat basket at the same time! We did, but one of them had done a poo on the way home, so as you can imagine it went everywhere with them both running around!
I'll get in touch with Angela-if they haven't advertised it there should still be places! xx
We had a lovely time with the kittens yesterday - nothing like little furry balls rushing about and mewing to put a smile on teenage faces! We will be able to take them home in 3 weeks, so I'm getting ready for mayhem!
Pulapula: glad your surgery went well (I'm impressed you managed an evening out the following day, well done!) and fingers crossed for the results.
Jencat: I'm a nursery teacher (and manager). Your advice about a phased return and the potential for getting bumped by children is very sensible. We have babies and children up to the age of 4 at nursery and I will definitively need to consider energy levels and my physical strength when planning my return. I will probably just do 2-3 days, then gradually up it, though I will not be returning fulltime - I had already cut back my hours before cancer due to exhaustion/stress. About the Moving Forward course, do email Angela. I'm sure she can book you in for the June course at Guy's. Not sure why they haven't advertised it online yet.
Lisa: hope you enjoyed your walk. OH and I went to the park this morning. No interest at all from our two kids though our son did actually end up going there with his friends to play table tennis - going for a walk with your parents is "boring" and probably not very cool!
Hi Lisa, I'm an infant teacher and I'd planned to go back before the school broke up for the Summer holiday.It was either then or wait until the children went back in September. When I told the rads staff that I intended to go back in July, they did keep telling me that I might not be ready and they were right as I felt tired and also emotional after I finished treatment. I also had to be careful that the children didn't knock me, some of the Yr 2 children are boob level! If you work in an office, you might be ready to return earlier than me. Also I was 58 when I finished treatment, so quite a bit older than you, plus I don't know how many weeks of radiotherapy you're having, but I had six, so that might make a difference too xx
Ps Gaby, I'm a teacher and working part-time. When you do return make sure you go back on a Phased Return. I'd been off for 11mths when I went back in September, but didn't return properly until nearly half-term x
Gaby, thank you so much for the M F course details, I'd looked on the website and couldn't find it. They have got M F courses near me, but unfortunately they're either on a day I work or include school holidays and the one I could attend isn't until November and that seems too far away! It would be lovely to meet you too!
Are you a teacher btw?
Hope you had fun with the kittens yesterday! After our cat died we went to a Rescue Centre and got two kittens, a brother and sister. They're 4 years old now and have been great company when I didn't feel up to seeing people! Actually my daughter's think Oscar has got attachment issues, where I am he usually is too! xx
Lisa, I don't want to put a downer on your going back to work plans, but you might find you need/want a little longer after rads to recover-I finished mine in the middle of June last year and had intended to go back to work in July,but found I was too tired. Mind you, I think I'm older than you, so it could be an age thing and you'll be fine x
Pulapula, hope everything goes well when you start T on Thursday and you get good results from your surgery x
I've been pretty quiet on the forums, as I'm a bit deflated about my extended treatment.
My last surgery (10 Jan) was very short and went well and I even managed a night out on the 11th!. It was a school reunion so I hadn't seen most of the people for 28 years! I don't have a wig and went with my head fluff. Got lots of compliments for being brave etc etc.
I'm booked in to start 4 cycles of T on Thursday, which will take me through to the end of March/early April. Then I'll have rads after that. Hopefully I'll have the results from my last surgery this week too, if there is any remaining DCIS they're talking about a mastectomy after chemo, or losing the nipple...fingers crossed for the all-clear.
Hope you're all doing ok - it's been a bit quiet here lately
Lisa: How many radiotherapy sessions are you having? It is a bit of a pain having to travel so far every day. Will you be ok driving back on your own? I've been told that the main SE of rads is tiredness, though I don't know how quickly that kicks in. Do be careful driving - I sound like my mother !
I think that if and when I go back to work, it will definitively be part-time, at least to start with. I am slightly worried that a part-time return is not what my employer wants and I haven't spoken to them about it yet. Am delaying that conversation for a few more weeks/months, as I am really not sure about what i want to do. I won't be going back until September at any rate, i.e. start of the new school year. By then I should have more energy and be physically fit to return. It will be a bit of a shock to the system though. And I just hope that my brain will be a bit more switched on by then - at the moment I can't see myself multi-tasking and rushing around as I used to!
Have a good weekend everyone. We're off to see some little kittens this afternoon. Our lovely cat died last summer (in fact the day before I was diagnosed - that was a lovely week!) and we are keen to take in a couple of rescue kittens now. Should be fun!
They don't seem to have listed this course on the website yet, but here's the info I was emailed:
Venue: Guy's Hospital, Cancer Centre, Guy's Hospital, Great Maze Pond, London, SE1 9RT - Dimbleby Drop in Centre, Group Room 2.
Week 1: Tuesday, 4 June 2019
Week 2: Tuesday, 11 June 2019
Week 3: Tuesday, 18 June 2019
Week 4: Tuesday, 25 June 2019
Session Timings: 1:30pm to 4:45pm
The person I've been in touch with is called Angela and her email is firstname.lastname@example.org. Maybe just email her and ask if she can book you on to the course. It would be lovely to have someone else from our bit of the forum there and to meet you! Let me know how you get on.
Hi Gaby, is the M F course at Guy's a new date, I don't remember seeing it? Also is it am or pm? I'm in Kent and there is a couple of M F courses at my local hospital but they're on a Friday, a day I work x
Someone from Breast Cancer Care just emailed me with the details of the Moving Forward course beginning 4 June at Guy's - the details should also now be on this website, if anyone is interested. I've just booked myself on to that one, instead of in March. I should be done with everything by then, yipee!!!
I think we all have good and bad days. It's particularly hard, when I'm tired and/or feeling lousy, but I try to look forward and to think of all the rubbish we have to go through as part of my recovery. Having the children to chat to also helps - even if I'm low they will often help to distract me by just chatting away about their day/problems. Can't remember if you have any kids (sorry), but if not, then meeting up with friends, fresh air, exercise etc have all helped me (to a point ) The other thing that helped me was to book a holiday for the summer - something lovely to look forward to once all this is finished! If you're really low, it's worth talking to your BCN, as there is professional help available for us.
I have heard that once all the treatment is complete and we're discharged, things can actually get more difficult, so I have provisionally booked myself on to a "Moving Forward" course that Breast Cancer Care offers. However, the London one is in March, which is a bit early for me and I am hoping that they might put on one in the summer. This course apparently deals with everything, including diet, exercise and, perhaps most importantly, our mental health post-treatment. One of my biggest headaches, and one which I am currently trying not to think about too much, is whether and when I return to work. Hopefully, talking to other people on that course might help me a bit in making my decision.
Hi Aley / Little Pixie,
Looking in the mirror is not always easy at the moment, I agree. I've also put on weight over the past few months (not to mention Christmas), plus I've got virtually no hair, stubbles instead of eye lashes, thinning eye brows, and despite extra daytime naps - dark rings under my eyes. Just lovely The other day I came across a photo of myself on holiday a couple of years ago: I had beautiful, long hair and looked "normal", hey-ho. I try to tell myself that it's only for a few more weeks and then hopefully my hair will start to grow back and I can try to rebuild the old me, if that's possible, although I've still got surgery and rads to contend with. I suppose in some ways there will always be the "me" pre- and post cancer. It's not going to be a worse version of myself or my life (I hope ), but a different one it certainly will be.
I treated myself to a facial today and rather weirdly my skin is actually better than it was pre-cancer. Either my skin likes the chemo (?????) or it's the lack of work-related stress.
Little Pixie: I'm sorry your treatment has been postponed. It's so frustrating when that happens, but I suppose it's better they don't give us chemo if our bodies aren't up to it.
Pulapula: Hope everything went well today
Take care, everyone.
Pulapula I am so sorry to hear your news. That’s just awful after everything you’ve already been through and you have every right to feel sorry for yourself. Best wishes for your surgery on Friday. Sending lots of love ❤️
Well, I wasn't expecting the results I got today! And not in a good way....Turns out I also have pre-cancerous cells (DCIS) which didn't show up on scans previously. So I am booked in for more surgery this Friday. Hopefully I can keep my nipple but I might loose it depending how widespread the cells are...I was also very happy with the cosmetic results from my surgery on 21 Dec so it's disappointing. Oh well, another scar to add to my collection. I'm also now a bit worried that these things can avoid detection - apparently it's because my breast tissue is very dense...
And I am also back with my oncologist next Friday to start chemo again - 4 x T cycles this time, so that takes me through to early April. And then I'll have a course of rads too :-(. Feeling sorry for myself - can you tell...
My main achievement today was to walk to the bus, get on the right one , collapse into the chair in the chemo ward and, after a visit to my oncologist, get home again, slowly! Then lunch and a nap - lovely
My oncologist told me that I should have surgery within 4-6 weeks of finishing chemo, which is great - can't wait to get the rest of that bugger out of my system! Rads apparently start after a similar gap, but I may need 3-5 weeks of daily doses, depending on what they find during surgery. And for those treatments I will need to go in to Guy's every day! Well, at least I know what I will be doing in April/May, how exciting NOT. Still, it will probably feel like a walk in the park compared with chemo.
Pulapula: I'm so pleased that you are recovering well from surgery and hopefully you won't need to have any more chemo now.
CarGarland: I agree, one way or another you need to know, so be brave and do the test.