I’m having a lot of shoulder and back pain too with my Rads. I have now been taking pain killers before rads. 9/15 today.
Glad you have been reassured about drains etc. Yes taxi sounds good for a meet up
Had my PICC line out today and also saw the breast care nurse and all looks really good. Need drains in possibly for another week as lots of drainage is occurring. Feel so much better now. 😊😊😊
Drummers widow, regarding the possible meet up, taxi and then we can center things around a hotel. So long as we know we can easily work round it x
Hi Stuck at 14
I had a few problems at first with Rads but nothing to do with the treatment. Just that position has given me back and shoulder problems. Partly due to the rock hard surface you have to lie down on but also what the Radiologist review nurse said was the fact that it is such 'an unnatural position' and 'you have to hold it like that every day!' She also said it was not uncommon to have those problems which made me feel better as I know I am one of the more ancient ones (and looking a whole lot worse than I did about 7 months ago when you would never have guessed my age). Anyway, I just take painkillers a good hour beforehand and that helps a lot with Rads (especially as I have now doubled up on the pain relief).
I feel that they are going at a good pace and 15 sessions over 3 weeks is a lot better than 4 1/2 months of Chemo.
I have a lot of concerns about what has been done to my body and am going to put a question to one of the nurses on this Forum regarding that.
Hope you and everyone else has a good weekend. We deserve it!
I don't think I could make the meet-up although I am a southerner but I wonder how many of us southern girls there are? I get the impression we have quite a lot of people on the Forum who are located much further north.
I can give you a suggestion for wig shampoo and conditioner though:
Elysee Star Professional Wig Shampoo (made in France but available in UK)
Synovation Spray on Conditioner (Daxbourne International, London)
Both products I got from South West Wigs who had a stall in an indoor market. (I bought a wig, too)
Hope everyone has a lovely weekend and the weather is looking good!
Lol SA14. Perhaps I am mistaking coal tar smell for "farm like" aka as very faint manure smell for the jamaican oil. Not too bothered re the cold cap now. Small problem compared to what others have had.
Woods I posted too soon! Just caught up with all the recent posts- Pastasmissus, congrats on finishing rads - is your cream working on the sore skin? Does anyone else feel a little panicked during treament about what is actually being done to your body?
MaryKamile I bet it feels good to be over a third of the way through- have you found it has gone quickly?
I was sad to read about how you've been feeling absolutely annie but like someone else said it is ok and good to cry - I do it every day! But glad you are feeling a bit better- there will be good and bad days wont there.
Sunnydaze I wear my wig when I'm out in public- I hate it and recently it has felt so dirty but I completely forgot about washing it so I will do that this weekend! Thanks for the reminder.
Drummers widow, perhaps if we meet in a city we could share taxis to wherever we meet so that there isn't a lot of walking to do? I feel like my legs have run a marathon every time I walk (but I am averaging 6000 steps now which I am happy with.
Gocat I'm sorry the cold cap didnt work but it sounds like you have plenty of new growth- we'll all get there wont we- I am soooo fed up of no hair - I just want to not see my scalp!
Hugs to anyone ive missed xx
Good luck G- and I feel the same about making plans - my stock response to invitations is yes but please be prepared that I might need to stay with kids or just be too tired. I'd love to meet up but with shifts and childcare eyc it might be tricky. I'm Derbyshire so Manchester great, like someone else said if we planned ahead enough I could possibly go further...
I too bought the jamaican castor oil stuff- it is dark and quite smelly - it reminds me of tar soap, it feels good though, and my hair has grown, but I guess it would have anyway? Thank you to the lady who recommended it 🙂
I'm on 3rd radiotherapy and the travelling and arranging childcare has been a bit of a nightmare and I do feel very exhausted and emotional. I'm also worried about a cough I've had for weeks now that no one else seems very worried about- I obviously want a ln MRI scan to rule anything sinister out.
Got some of the jamaican oil from ebay. Says dark oil on the bottle but it is clear stuff that comes out the bottle. Also got a slight "farm like" smell. Hope its not a forgery. Also got some waterman shampoo and conditioner which I see has been recommended in places.
I did cold cap but it didnt really work well for me. I am also hearing impaired and hated wearing the cold cap as couldnt wear my hearing aids at the same time and felt very cut off and struggled to understand what the staff were saying to me. Wish I hadnt bothered with it now. Oh well.
So anyway, last week got hubby to shave my head as had bald patches and the rest of the hair just looked so horrible and I looked like a witch with blond hair which was still falling out even after I finished chemo. So he used the 1 inch setting so Im probably at the same level as if I had lost my hair in the beginning and I can see what I thought were still bald patches have very fine white hair which are nearly an inch I think. Should all match eventually I guess. Just wearing scarves as dont like the wig. Too hot and itchy.
Just a quickie Sunnydaze, I have a long full bodies real hair wig, hardly worn (therefore hardly washed but had had a few 🤣) the people I got mine from told me not to bother with wig shampoo but to use the Aussie shampoo, conditioner 3 minute miracle stuff, can’t remember exactly which type of the range but can check when I get home if want to know but wasn’t sure on your wig type and whether it is therefore suitable.
As for meeting up, I will see where and when and would love to fit in if I can so go ahead and agree between you definites first (I am Notts so location either end of the country not a biggie for me) just we have a busy few months with girls doing shows and all sorts and things keep popping up for them and I don’t want to say no to anything they want me to go to at moment, want to be fully present rather than the knackered me they have been getting 🥰
Thinking of you Jayne 🤞
Hello Sunnydaze, just saw your post regarding wig shampoo. I had a shampoo and a spray on conditioner oil both from the brand called Dimples... they were really good, just fling the old wig in the sink with a splodge of the shampoo and give it a wash through, rinse and leave to dry overnight, smelt nice too. The spray in conditioner was good for styling when wearing it, gave it some texture too.
Here's a link..
Re a meet up I live in Kent. Problem I have is I can’t walk very far. So probably won’t be able to make it x
Thinking of you today G. The very last one. No looking back. You can do this girl. Sending you lots of strength. We are here encouraging you onwards.
Good luck with your appointment today Jayne. It will be alright. You’ve had chemo and surgery. The bas**** tumour has gone. We are survivors.💪💪💪 Hang on to that thought girl and good luck too xx
I hope you’re feeling a bit brighter too today AbsolutelyAnnie xx
Wayhay, that’s great news that you want to meet up too Jayne and thanks for being so positive about it. I really want to meet everyone too. We’ve been through a lot and it will be great to see as many of you as I can 😊
I just wondered if anyone of our southern ladies would be able to make it if we did London instead? It would make it a bit harder for me, but I would be happy to come down if it meant a bigger meet up. If you’re interested it would be great to let us know as soon as possible and we can get organising. I think so far, the vague plan is the following people are interested:
And so far we are considering Manchester. It’s certainly a great city, with plenty going on.
On a different note. Can anyone recommend a wig shampoo?
I think I will give my wig a spruce up, even though I’ve hardly used it.
Have a good weekend
Best wishes to those finishing chemo and have Consultant appointments today xxx
Good luck for your last chemo G, will be thinking of you ❤️🤗
Good that you have an appointment with the surgeon today Jayne. Even if it’s not for results, hopefully it will put your mind at rest even further❤️🤗
Hope all you amazing Dec/Jan ladies find positives over this hopefully lovely weekend 💕💕💕
Evening/morning (!!) Jayne, so the steroids are why I am awake and I am guessing yours is due to your appointment, wishing u so much of blooming everything tomorrow 🤞 ❤️
I also think I am awake as a little bit excited about giving my girls a little well done / thank you gift and card to mark the end of this traumatic experience for them. I know there are lots more hurdles, sleepless nights and wobbles ahead with various tests, ops and results but I truly feel the chemo bit has been the hardest for them (lumpectomy and mastectomy were much more manageable for them to comprehend).
Hope Friday is kind to you all and you in turn are able to be kind to you xxx
Absolutely Annie, can I just echo what everyone else has said. Great news and the emotions have hit us all at different points.
I'm booked onto the macmillan hope course in September and it feels good to know that it's there after I've been signed off.
Meetup Manchester or London would suit me but I will go anywhere. Would love to see everyone face to face. We are such a team!!
My drains are still working overtime but I have been much more settled since my chat with the breast care nurse. Seeing surgeon tomorrow aftrrnoon and not sure if getting results from pathology so quite nervous about it. More nervous in fact than I was for the meeting where I had the original diagnosis. I had my head buried well into the sand before that appt!
Good luck for last chemo G, I don't think I could bear to go back to that now. You are nearly done.
Fingers crossed for some better weather this weekend so we can all chillax on this road to recovery xxx
It's all good news and tears of relief mixed in with all the rest of it I expect. You have done so well and isolation is awful, so well done you for getting on the Forum and being so honest about everything. My husband is pretty deaf, too, and has often avoided social things because of the difficulties there. Seeing me through all this has helped him to take on far more socially than ever before. Some good comes out of it all and, as others have said, we are all supreme survivors looking at all that has been thrown at us.
I am on Rads and got 1/3rd through the course by having No 5 today. Everything is an achievement!
Lots of hugs XXXX
Same here Sunnydaze!! I went to buy some nearly opened tulips for the chemo ward when shopping today as part of my thank you gifts...thinking it was to give tomorrow, whoops, put them back, they would have been in full bloom before I hand them over on the right day 🙄 xx
I’m such a muppet G, I have been thinking it’s Thursday all day today. Chemo brain 😜 God help me...
Good luck anyway xx
Hey Sunnydaze, Friday is last chemo...although steroids startbtomorrow so feel like it begins...anyone online in the middle of tomorrow night I may well
be in touch 😉
big hugs everyone xxx
Glad you’re feeling a bit better Absolutely Annie. Baby steps....
Oh and G, loads and luck for your last chemo tomorrow . No looking back. Onwards and forwards.
Thank you all ladies - this forum has been fantastic. Initially when it was mentioned to me I thought no no I dont want to be stuck behind a computer - this is not going to help. But my God where would I have been without your words of wisdom.
Yes I am looking for a Moving Forward course but think it is November before there is one near me.
Good in a way that you have good friends outside the family. Sometimes I didn't want my sister to know what was going on. I got enough support from the team and felt they were all wishing me well. how they can do this day in day out is beyond me.
Keep going ladies - we are all nearing the finishing line and I for one hope we say goodbye to this horrible disease once and for all.
Such good news Absolutelyannie ! I think it is perfectly normal to feel emotional as we get towards the end of treatment. Life for the last 6 months or so has been limping from one appointment/ treatment to the next and feeling pretty crap along the way. When I go for radiotherapy I pass by the oncology waiting room and see all those people, some about to get bad news. Seems like a lifetime ago when that was me.
Meeting up is a great idea seems like Manchester/Yorkshire might be the best option?
Wow ladies you are just bloody amazing!! We are all battling, getting through, just doing what needs to be done and my god we are doing it in style, puffy eyes and all. Just massive huge hugs, only we know this experience, I am in awe of each and every one of us 👭👭👭👭👭👭👭👭👭👭
I echo what Sunnydaze and Dikat say! I am pleased that your results are good. I have to say like Sunnydaze I have been very emotional and tearful recently. I to am on my own, lucky you to have a supportive sister. I wish mine was but I have got good friends near me. Let those tears out! Believe it or not it does make you feel better. I think no hair, no eyebrows and puffy eyes are very fashionable at the moment 😊😊😊
Am 10 days post rads and a beautiful red colour, with a little bit of blistering! Not too sore though, and I am moisturising like mad.
Just had a 3 day residential with my Guides, it was fantastic! (only 7 Guides and 3 leaders so very civilised!)
I would be up for a meet if it was a little closer than Edinburgh. Yorkshire or Manchester would be great or London at a push. Will see what everyone else thinks 😊
absolutelyannie, I totally echo what Sunnydaze has said. So pleased your results are good but can understand the fear is setting in regarding not having contact with the team who have been looking after you. Sorry that you are feeling upset but just let those tears flow as they need to come out. I know you still have your radiotherapy to go but is it possible for you to start looking into booking onto a moving forward course so you can have it in place as the end of treatment draws near. I think it would also open up further support so you feel less isolated. Just remember, we are all here for you also.
Sending love and hugs 🤗💕 xx
Ahh Absolute Annie,
First of all that’s fantastic news that you’ve had a good response to chemo and that your margins are good. 👏👏👏✊That’s really really excellent news and definitely something fantastic to hold on to.❤️
Im so saddened that you are sat at home bawling your eyes out. 😢
It sounds like it’s been a really tough day and it’s been such an emotional difficult journey we have all been on. I’m not surprised you have let the tears flow. Better out than in!
If it’s any consolation, i am struggling more now than I did through the whole of treatment . I think it’s normal reaction tbh.
I send you a big virtual hug and everyone on here will try to help you the best they can.
Well done Absolute Annie, it must have made it so much more difficult having a hearing impairment and fighting this horrible disease, but you, me and everyone else on here has almost done it. We are survivors, we’ve got the scars to prove it.💪💪👊✊. We’ve done it sista!
Big love to you, your tears will pass and all will be well.
Hi Dikat, Sunnydaze, Drummerswidow and everyone else.
Here I am back home after my post op review bawling my eyes out. Just dont know why as I got excellent results margins have been declared ok and was told this was as a result of the good response to chemo. I am now progressing to radiotherapy and have been told next appointment in 4 months time will mark the end of my treatment.
I think it has suddenly hit me that I will be without all the love and support I have received from consultant and team. Maybe it just hit me what I have been through but this is the first time since diagnosis that I have let all my tears flow. I think it is mainly the love and support given to me though as apart from my sister and this forum here (Which I wasn't very good on) I did not have much. I had already experienced the isolation being partially deaf but found it harder during this cancer journey.
thanks to all your guys for keeping my spirits up.
I know I’ve posted this before, but Yoga with Adrienne is a brilliant free programme. This link is for complete beginners, but there are loads of programmes to choose from. She recommends doing this complete beginners programme for one week. You reallly feel the difference in your flexibility even after one week.
My friend who has been doing yoga for years does yoga with Adriene every morning too. I just cast the programme on to my tv, or if you have an internet tv even better.
The hardest part of this session is just showing up.🤣
Glad you’re sorted Jayne. You sounded a bit panicked yesterday. 👍
Absolute Annie, good luck with your meeting re; path report. Hopefully all will be well.
Drummerswidow, I hope your radiotherapy is going 👌 ok.
Your day at MeadowHall sounds good Dikat. A bit of retail therapy for one and all 😉
Yes, I’m enjoying my holistic treatments too Dikat. Ive had one reflexology and one massage so far. I preferred the reflexology though. I felt good afterwards and sleepy too. I like the rebalancing idea that reflexology is supposed to be good for - And all for free. My treatments are carried out by The Lavender Touch, a local charity, what about you?
Well ladies, I would be interested in a meet up too. As you say Dikat we are all flung so far and wide. I’m not sure how possible it will be. I know there was a suggestion to meet in Edinburgh, but that’s so far away for many of you. I am happy to travel if we plan something at least 12 weeks in advance and then I can buy a cheap train ticket and then it might be more affordable.
Maybe we should get a list of who is interested and then find a geographical location that works. I could do Edinburgh, Yorkshire/ Manchester area ( my folks live there) or London if I can get a cheap train ticket. Birmingham would be trickier and more expensive.
Anyway, just throwing this out there to see if we can come up with anything.
Sunnydaze like you I don’t know how I would have got through this without this group- everyone is so supportive and to know that we are not alone means so much 🤗
hugs to all today and always 🤗🤗🤗🤗
Aww that’s brilliant LB, so appropriate. Thanks for sharing ❤️🤗
So pleased you have been reassured Jayne. I agree with you about cancer teams, totally in a league of their own. Hopefully you can chill out a little now and get on with your recovery.
I got a call yesterday to say my results are not back from surgery so have been given an appointment for next Wednesday instead. Had bloods and saw chemo nurse yesterday for my pre targeted therapy appointment (have to go every 3 weeks like chemo) For the first time in ages all bloods were in the normal range so my body is definitely repairing (7 weeks now since last chemo) just I could sort out these stomach pains! Nurse said I need to go back to GP as they are good at passing the buck when having treatment. Had a nice rest of the day in Meadowhall, got my red dot shampoo and they also gave me a free sample of a scalp treatment that promotes growth. Kids got some new clothes so they were happy and hubby just paid and carried stuff, bless him ❤️
As well as my targeted IV therapy today, I have an appointment for a holistic needs assessment at my local hospice. Hopefully will get signed up for yoga or something. I’m also loving the reflexology I have once a fortnight at the hospital. I didn’t feel anything after the first session but felt exhausted after the second one and had the best sleep ever! Good job I’m not back to work yet, no time 😂
Have a good day everyone ❤️🤗
absolutelyannie good luck for your results, let us know how you get on 💕
Glad you have been reassured. It’s better that the fluid is coming out as well rather than staying in I suppose.
I have to say that the cancer team team are amazing at my local hospital too. xx
Thanks for that. I called the breast care nurse today and she got back to me. Said not to worry about how much drainage I'm getting. She was quite cross with the doc in A and E for scaring me as there is no problem at all. She also cobra Ted the surgeon about the clexane and he is happy for me to continue on half dose for the rest of the week. I feel so much better for the reaaurance, the cancer teams are so amazing. I think they put the rest of the NHS to shame tbh (obviously not all of it or everyone, but they are just so consistently good).
Love the pic LB. Thanks for sharing x
That’s lovely LB, very sweet. And there’s nothing like a sister to be there when the chips are down.❤️
Its great to know you’re half way through. We are all in this **bleep** together and it’s definitely the support on here that is helping get me through.
I just have to share this - after my meltdown about not having any more chemo but then going on to weekly for 6 weeks (halfway now 😀) my sister just sent me this 😀 It’s for all of us 🤗🤗🤗🤗
Hi Jayne 1966.
My drainage was quite red to start with and did have some clotted blood in. The nurses showed me had to milk the drains and to reset the vacuum before I went home from hospital. I can’t remember how long this went on for, sorry. It did turn a straw colour. I’m a large lady and big boobed and was told to expect quite a bit of seroma. I take an anticoagulant tablet. I was draining over 100mls as well.
It’s good to get it checked out though by the nurses. My Breast cancer nurses were very good. Phone them in the morning and get seen in the afternoon or earlier. They may need to syringe some fluid off as well. This doesn’t hurt! I’m sure they will reassure you. xx
I've just done my drains this morning and had 160 from one side and 145 from the other. I'm at day 5 post surgery and am really worried. I've got a call in with the breast care nurses so waiting for one of them to call me back. I'm half dosing on clexaine as the clinical surgeon in saw in A and E on Sunday was shocked at how high a dose I'm on and after the scans last weds I know the clot has gone. One side of drains is dark red the other a pail orange so not sure which is the healthier one. No pain though so I guess no infection, although having said that I have no feeling in them at all 🤣😂
Hello again, what great photos.
Cant remember who asked but yes the grey is au naturel.. The wonders of chemo. I wasn't overly keen on it at first, felt like an old lady but used to it now and it will probably stay as so much easier than keeping up with the dye.
Drains... I had a drain after my MX which I had to measure the liquid each day and a nurse phoned to take the numbers and after 4 days she came and removed it but after my ANC I had another drain and that one I had to empty every day and let them know when it was draining below 50 I think. We'll that little blighter just kept draining n draining and it was getting darker and redder.. After about 10 days at a dressing appt they removed it anyway and gave me a couple of large dressings to apply. After a day or so it stopped leaking and healed over. The nurse said the colour was changing as the suction was draining good fluid. They are a pain but they go eventually.
Good luck with all appts this week and for those finishing treatments and definitely meet up.. I've recently met up with the ladies from May 2018 and it was incredible
Good luck for Friday G, bet you can’t wait for the last one to be out of the way 🔔 🔔 🔔
Thanks for your kind words absolutelyannie and good luck for your results on Wednesday. I also have an appointment through for Wednesday but have already been warned it might get cancelled as results probably won’t be back so not holding my breath.
KC72 you look absolutely fab. Never would have guessed that was a wig.
LB2 great that you are over half way through your rads, the finish line is definitely in sight!
Would be great if we could all meet up and have an overnight somewhere as Shi has suggested. I know we are dotted all over so not sure how feasible it would be. I know Sunnydaze put the feelers out a while ago but I’ve forgotten who responded.
Hope everyone is doing ok. Bloods & Onc nurse for me tomorrow and then IV Herceptin and Pertuzumab on Wednesday. Feels weird going back to where I had chemo xx
G 😘😘it’s not moaning darling, these threads are everyone’s safe place where everyone understands 👭👭and everyone is always here for each other ❤️❤️I’ve driven my husband round the bend about my hair. Please all of you try the Jamaican black castor oil too, a lad who had been bald in the shop, showed me his full head of hair from using it and showed me his before photos which was really kind of him, I bought the biggest bottle I could get my hands on it’s sunny isle extra dark Jamaican black castor oil the one I used 💕💕✨✨Shi xx
KC72 you look beautiful!!! I think you have been very strong sharing your hair story here and it must be hard sometimes listening to the likes of me moaning away, thank you for taking the time to respond and with such positivity and encouragement xxx
Thanks Shi for your tips xx
Wait till you all meet ❤️❤️It’s a special 👭👭👭that you share ❤️❤️ We did 5 star afternoon tea in London and then most of us stayed together for the night in an apartment 😁😁it was like having a teenage sleep over, it was 😁😁😁💃🏻💃🏻🕺🕺💃🏻💃🏻👍👍👍👍 think about overnighting because the afternoon flys by when you are together💕💕✨✨Shi
Hi just a few eyebrow tips, I got some eyebrow stencils from Amazon and the lady where I had my wig fitting used brow powder and it came with a stiff little angled brush (I went straight home and amazoned the lot) also that cheap brand at Superdrug did a great quad of 4 browns eyeshadow that I used for brows too, the stencils are great, just hold in place whack the powder in with the stiff brush and repeat the other side, found it less harsh than the pencil and more natural looking for me ❤️❤️Hope this helps 😁💕💕✨✨Shi xx
Oooh that’s a gorgeous wig KC72 what a lovely mane you have. Suits you! I would never guess that you’re wearing a wig.
You look lovely too. Pleased to meet you KC72 Thanks for posting.