@Flower123 You look so pretty with your headscarf on! I have some scarves and will definitely be using them once my hair falls out and when it is too hot for my wig. xxx
@Impatience I was told by my oncologist that I should take paracetamol for combatting the bone pain, but if you are being cautious because of the infection risk, can you check with your hospital? Mine has a 24-hour hotline you can ring. xxx
Sorry I’ve not posted for a few days.
I’m looking for advice. It’s 7 days since I had the g-csf injection. I was only given one so I’m assuming it’s the long lasting one. This afternoon I have awful bone pain. Do any of you have experience of this and is it normal 7 days later? I dare not take paracetamol as I’m paranoid about my temperature given cycle one and the rush to hospital.
Hope everyone else is having a better day.
Thank you. Imp xx
Jennifer, what a pretty headscarf you have on, my hair is shedding everywhere hubby said I’m worse than the dogs, but I have just cut it all close to my head with scissors, think I will be getting the graders on it later, I’ve booked on for the make up class, and did go to boots yesterday and bought a very bold lipstick and a special brush for drawing my eyebrows on, were all walking this journey together and it’s so good to hear how positive we are, enjoy the weekend and the football xx
Hello Everyone, I hope today is being kind to you all .
@GonnaGetThruThis I have bloods on Monday then oncology telephone review Tuesday. I am same as you in the way I’m going to treat it as day one again and take each day .I’m so excited to be going out tomorrow to bird land all outside to see my 1 yr old granddaughter not seen her for 6 weeks .
I had a melt down this morning as hair was coming out in chunks . Have decided to shave of to grade 2. Lots of tears but now feel ok as hair not falling out. Hubby been so brilliant he is my rock , he had been going around with the hoover getting the hair over last few days.
Been 15 days since chemo so hair has done me proud for so long .
Enjoy the weekend
Had the bloods and assessment yesterday. Love how easy it is for them to take blood from the PICC line. She said he would call if any issues and I didn’t get the call back so that means all set for Monday. Last time they wrote the 4 results down so I will be interested to compare them. The assessment part was her going through the list of side effects and asking if I experienced them at all. I was like no, no, no and just mentioned tiredness in week1, dull headache on and off in week 2 and dry eyes this week. We discussed the cold cap and she asked me how the hair was and I was like ‘arrr well you can see its all still here’. I haven’t even had any additional shedding so I said I will definitely give it another go. She said that was all excellent but to be aware that the treatment can be cumulative so the next cycle might not be as easy. So I have to go back to that day 1 mindset and just take each day as it comes. Not looking forward to the side effects starting off again (4am wakeups etc….) but we all know it means the drugs are in our system and working to do their job!
@simplyeve Yvonne so glad to hear that you are doing ok and got things done. It’s a good feeling isn’t it. I am also using your trick of writing in Word whilst running down the BC forum page to try to make comments and/or any questions from as many people as possible. Also thanks for sharing your photos. I hope I have as much guts if/when the time comes. 1/3 way through is a great milestone.
@hopeful1974 love the photos of you and honestly I before I read what you wrote I thought that these were before and after photos so the wig one was your natural hair. You look fab and could never tell it was a wig. It makes me think that if I need to then I will embrace it as well.
@Flower123 if you’re feeling good now then everything crossed for the next week
@JessicaB how was the first session? I love how we all look in our cold cap photos. I remember saying to my husband I felt like a rugby player with special headgear on. Really hope it works for you.
@Heels to walking boots Day 20 for me and no sign of the hair going. Mind you it is really oily and needs a wash but I am avoiding that. I comb it once or twice a day and leave it out (mine is shoulder length and straight). I hope it works for you. What sort of stats did they give you? I remember the nurse saying it is about 60% effective. She told me stories about people is totally worked for and totally didnt work for. She said everyone has their own idea of success as well. I tried not to laugh when she told me one lady had longish hair and she just had a bald patch in the middle so kept all the front side and back so had a hat or scarf on and no one had a clue she had this huge bald patch. For her this was acceptable
@Louise65 I have been thinking about you this week and when you didn’t post I was wondering if you weren’t so well. Sorry to hear that you have been struggling but hopefully a few days in bed and no youre in your 2nd week you will start to feel better and get more energy and the pain will go.
@Impatience how are you now the first week is over? Hopefully your strength is also returning.
Loads of you had mentioned the Look Good Feel Good workshops so thanks for the link @hopeful as I also clicked and have booked myself on in a couple of weeks time. 23rd I think.
@Trowster did you book on? Also how are you feeling now?
I'm positive ive missed people but hopefully we all know we are tough and strong and will get through this. And thank goodness we still have some good tennis to get through this weekend. No idea what im going to do the next few weeks if im not feeling the best! Must scroll through Netflix to see whats on offer. Enjoy the weekend ladies.
@Louise65 I am so sorry to hear that you have been feeling really low. That happened to me when I was doing EC chemo back in Feb-March. I went on antidepressants and had counselling (from Macmillan and from the volunteer-run Centre at my hospital) and both seem to have helped a lot. I felt low because I wasn’t able to eat much at all and I wasn’t sleeping. I was given sleeping tablets and then the antidepressants kicked in (those take 4-6 weeks to work fully). I did the 3 rounds of accelerated EC and then had my mastectomy to give my body a break. Fortunately, this new round of drugs has been kinder to me and so I am in an altogether better place. I think I was also expecting the worst so this has been a nice surprise. I just wanted you to know that you are not alone in this and that things will hopefully get easier. There are always things your team can do to help you. Sending lots of love and hugs. Siân xxx
@JessicaB So glad you seem to be coping well and I love your photo's, Thanks for posting them. I know you had one on your profile, but I really like the short hair cut too.
Much love Yvonne xx
So sorry to hear you are struggling at the moment Lousie and I fully get the horrible mouth as that is exactly what I started with after my first treatment, I now have an antiseptic mouthwash which was given on 11 of my first treatment, the improvement was almost immediate and I would highly recommend asking for it. I was originally advised to take it 4 times a day, then as mouth improved I reduced it to morning and night and then followed up with my aloe vera toothpaste, I talked about it on the unit yesterday and was told if I had similar problems again I could up it to 4 times a day again, I have managed so far today, but if I feel my mouth is deteriorating again I will definitely increase it. Hope this is helpful to you.
I have been lucky with the bone pain, I do have a painful shoulder as I broke it a few years back, but it is really only when I sleep on it so I usually sleep on my back or my front atm.
Love Yvonne xx
Hope everyone doing OK, I have been reading all the threads just been very low. I've spent last 3 days in bed and today my oncologist was happy for me to see my GP as couldn't face a 50 min car journey each way to get checked. All ok apart from oral thrush it seems day 7/8 my body shuts down and uses everything I have in reserve to get through.
I'm having horrible bone pain in the leg I had knee replacement which is really unpleasant.
Hope everyone has a good weekend.
Love Louise x
@JessicaB Great pics and I'm glad to hear it all went well. I hope you continue to feel well and that the cold cap works for you. xxx
@hopeful1974 sorry to hear you are delayed but hope you enjoy your nail workshop instead today..i am hoping to book myself on one of these soon.
Also, looks like you will get the weather next weekend for your trip 😁
@simplyeve -hope things are still going well for you and you have a wonderful weekend.
I am well and hair is still in tact so far Day 15 so i am hopeful that the cold cap is working.
@GonnaGetThruThis hope bloods all come back as expected, I am pretty sure they look at things quite quickly and as Yvonne said i think they would run them again if need be ...i saw a lady have that done at my first Chemo session. I can also understand how emotional you are feeling and i am glad you are well enough to enjoy the leaving activities it quite a milestone. My eldest has finished school completely so have everything crossed that she will get her University Place! I still can't believe i have am 18 year lol..do not know where time has gone.
Thank you Sian and Yvonne for sharing your beautiful pictures earlier lovely to put a face to name.
@Flower123 Glad you are feeling good the second week, i must admit i also feel the same and have everything crossed that it continues this way. I am even going to venture out on the bike this afternoon as feel good.
@JessicaB how are you doing after your first session?
@Impatience --love the rhyme going to be my mantra from now on.
To anyone else who wishing you strength and wellness.
Hi @GonnaGetThruThis , I have always had to wait for my blood results but every hospital probably does it slightly differently, especially as your chemo is on Monday.
I'm glad that the leaving activities are happening on a good week for you. It is great when we can participate fully in our children's lives.
I have just enjoyed the Nail care workshop from LGFB and it was fun and useful. I also met a friend for a walk this morning, so feeling positive even though I am a bit disappointed that my chemo session had to be delayed. xxx
My session went well mainly thanks to all the kind advice here. Here are a couple of pictures, one of me with the cold cap. Fingers crossed it works a little. Hope you are all finding little wins each day xxx
Hi @simplyeve , I was only given 5 days' worth of Filgrastim this time so perhaps that is something they will rethink for the next round. I eat a lot of protein in general, including lots of red meat, so not sure I could eat much more of that! I am increasing my fruit intake as wondering if I need more vitamin C! It is good that they are monitoring your magnesium levels - I'm not sure mine are being monitored, so I will check. I am very glad to read that things seem to be ok for you so far. Long may that continue. Enjoy the LGFB course. I did the nail one today and it was really good too. We get a goodie bag after that one too so that may be worth looking into as well. xxx
I live in Gloucestershire ( Cirencester) and weather has been quite nice last few days . The feel good look good course I have booked for 29 th July .
@hopeful1974 sorry to hear your treatment has been delayed, but good to hear you can still get away and hopefully the weeks break will give you time to build yourself up can I ask how many filgrastrim injections you are having? I have to take them for 7 days, after my 1st chemo I started them on day 4, but now I start them on day 3 so may be worth checking if yours are different to mine as they have not changed the dosage of the injection despite lowering the dose by 20%. I also ate three steaks last week - expensive but I enjoyed them so helped my protein levels no end.
@GonnaGetThruThis I only get my bloods done the day before and all my appointments start at 9am, so yesterday my bloods showed my magnesium levels are still too low, so they have given me the soluble sachets and I have to take 2 a day for the next 7 days, so I think if they have any concerns even on Monday they will either check your bloods again, or medicate on that basis. Hope that helps, it's so difficult when it's all new isn't it. Seeing your children go up to high school is really emotional isn't it, they seem so grown up all of sudden.
@JessicaB thanks for the good wishes, so far things seem to be ok, my meds have been changed quite alot so I am hopeful that things will continue to improve. I hope you too found your first session to be tolerable and any questions of worries don't forget to ring your team, we're all here for you too xx
@Trowster How are you lovely? Have you managed to come home from hospital and get those birthday pressies yet? Sending you 🤗 and stay 💪 you can get through this xx
@Impatience thanks for the good wishes and just love the verse, it say's it all and so positive, hope you are well too xx
@Flower123 glad you enjoyed your rocket ice lolly I enjoy the plain orange ones and have a stock in my freezer now too. Glad to hear you are still doing well long may it continue xx
@Louise65 hope you are doing ok xx
@Fairie how are you my lovely, hope you are feeling well after your treatment xx
@Heels to walking boots Hope you are still feeling well and your hair is still lovely after the cold cap. xx
Look after yourselves ladies and I'm pleased to report I am feeling ok, even managed to do a bit of long needed cleaning this morning, so onwards and upwards. Have also booked a look good feel good make up session for the beginning of August.
Much love to all Yvonne xxx
@hopeful1974sorry to hear you have to wait a week but hopefully you can still get away and enjoy some time away.
I'm off now for my bloods and assessment and hope all is ok in preparation for session 2 on Monday. Do they give us the results today or do we have to wait? although im thinking they will have to process them quick to make the decision about Monday or not as im booked for 9.30am Monday.
Im feeling emotional today but for totally different reasons as it is my daughters last day of Primary. I've already shed tears and im so happy that all the leaving activities are happening this week as im feeling healthy and strong and (apart from the few parents ive told), the rest are none the wiser that there is something 'wrong'.
hows eveyone else feeling?
Thanks, @Flower123 . I spoke to my CNS earlier and she said that Cornwall should be fine as long as I can have my chemo next Friday. We’d set off straight from chemo and the drive can be up to 7 hours - one way to kill time when I am buzzing on the steroids!
So, as I will not be in the chemo ward tomorrow, I have instead booked myself on another Look Good Feel Better workshop - the nail one this time. I’m happy to have something nice to do as a consolation for having my treatment delayed by a week. When is your workshop?
I’m very glad to hear that you are feeling better this week and hope you enjoyed the ice lolly. Is it quite warm where you are? Have a lovely weekend. Love, Siân xxx
Good Evening Everyone hope you are all doing ok today and the sun is still shining . I’m sat in garden with a rocket ice lolly ( just fancied it )
Cant believe it is 14 days tomorrow since had first chemo what a difference I feel this second week fingers and toes crossed it continue.
@hopeful1974 @Sorry to hear that you have to wait another week, at least they are keeping a close eye on you . Wow Cornwall sounds amazing hope you manage to get away!I have only been a few times and love Padstow x
I hope that those having chemo today are feeling ok and that everyone else is comfortable.
I have had the news today that my next chemo session, which was due to be tomorrow, is to be delayed by a week as my neutrophils are still not high enough. It’s so bizarre as I have been feeling so well! When I did EC in February, I felt awful but my bloods were always really good and now I have the opposite! I am a bit gutted as we had planned a week in Cornwall from next Friday, but I am thinking we could still go as long as I find out where the nearest A&E is. I felt fine last time for the first few days after chemo so I should still be able to enjoy the change of scene. No one ever said this journey would be predictable!
Wishing you lots of luck for your second session today.
Jessica - hope your first session goes well too. Remember once you have started you know you will finish.
To everyone else embarking on another session I’m sending positive vibes and wishing you well.
“Chemo is my friend, cancer is my foe
I'm letting chemo in to make the cancer go!”
Thanks, Yvonne. I got the wig from here: https://www.triciaswigs.com/index.html#
I think there are lots you can buy online too but Tricia does a day a week at our hospital so I saw her there. She also cuts my hair whenever I want for free. There are so many amazing volunteers at our hospital. I didn’t realise there were so many volunteers doing such lovely things for cancer patients and I’m really enjoying making use of their services. The Look Good Feel Better volunteers offer courses on nails, wigs etc. too.
Thanks Sian, you look lovely too and I love your wig, did you get it online? I was advised to look at a website in Liverpool called Hairy Fairy but I assume I could look at any website as they don't do fitting as such. I will definitely look at the make up course too.
Lovely to put a face to the name I totally agree.
Love Yvonne xx
@simplyeve You don’t look scary, you look lovely and it is lovely to put a face to your name.
I am going to attach a photo of me with my grade 1 and one of me with my wig on and after the Look Good Feel Better workshop:
Not quite sure why my phone keeps turning photos sideways!!
Hi, I’m sure it’s been posted before but where do I find the link for the feel good cause, I would like to know how to do my eyebrows,
Good afternoon Ladies,
@Trowster so sorry to hear you have been unwell, but glad that you got some treatment and am keeping my fingers crossed that you are still hoping to be home tomorrow. What a shame you had to be admitted for your birthday, but at least you have some pressies to look forward to when you come home aren't our husbands amazing. I would never have thought mine would have be so capable and thoughtful as he has been, as I said to the Oncologist when I saw him, hubbie has been my rock and don't honestly think I would have coped with the treatment at all if I hadn't had his love, care and support.
@JessicaB good luck 🍀 with your first treatment tomorrow, hopefully I'll be having my second one, I have been for my blood test today, so am assuming they will notify if there is a problem, though my bloods were ok last week when I saw the Oncologist. I agree that a positive attitude is very important in all of this, but if you do have any side effects, my own personal advice would be to contact your team sooner rather than later.
@GonnaGetThruThis I do hope you have found the mouthwash has helped I was given an antiseptic mouthwas called Chlorhexidine Gluconate, I use it morning and night at the moment as my mouth has improved tremendously, though it recommends 4 times a day and after my treatment if I find my mouth in deteriorating again I will up the dose again. I hope your genetic testing results come back to soon and you get good news. Interesting that they wouldn't take bloods from your picc line, I had something similar when I had a canula for my drip, where they wouldn't take blood from it, so the phlebotamist had to take it from my “nodeless” arm, which meant I couldn't have a tourniquet she did it quite well though and I only had a small amount of bruising. Yes I have bloods taken the day before my chemo treatment, the chemo ward issue me with the BT request, I make an appointment with my local surgery and then just go there. I was told I would have an assessment after my first treatment, which I did and now I already have a telephone appointment for assessment after my second one, but I think that is because I was so unwell after my first one.
@hopeful1974 thanks a million for the link to the diet, it was really useful to read through it and get some info👍, though I must admit I had tried most of the foods recommended in my first week and think it was the really dry cotton mouth that caused my the real problem. I hope your treatment on Friday goes well for you too. You must be feeling so much better as you had such a terrible time with your first set of Chemo, you give me hope that the reduced dose will work as well for me thank you🤗.
@Impatience so glad to hear that you feel you are tolerating the treatment and your energy levels are rising, I totally understand the apprehension as I have my next treatment tomorrow. Although I feel a lot stronger that I did this time last week I too feel that my admittance took a lot out of me.
@Heels to walking boots thank you so much for the good wishes, we went to a local carvery for lunch to celebrate🎉. I'm so glad to hear that you have coped reasonably well with your treatment, I too have not had many problems with bone pain, though I have a torn meniscus in my knee which has been playing up a little, but I think this is down to lack of exercise. I also hope that your coldcap keeps working for you. I didn't try it so now have short spiky hair which is still coming out but is not such big clumps and is managable, if I can work out how to add a pic of me I will! Though be warned I'm no sinead o'connor🙈
@Flower123 It's lovely to hear that you are feeling well enough to take your lovely doggies🐕 for walks and I adore sausage dogs, we don't have any pets anymore and I would really enjoy having a dog or a cat, but think this is not quite the right time. I too think I will sign up for the look good, feel good, course. I don't tend to use a lot of make up either really, but think it can't help to try and improve myself, I also think it will be easier to do it online than in an actual face to face group. Several ladies on this forum have said how good it is so I hope you enjoy it. I also think this forum is a wonderful place to come and be able to say exactly how you feel and not be judged but have the support of all the lovely ladies on here.
@Louise65 I hope you are doing well after your second treatment. I like you am thrilled to have lost all my “whiskers” I finally have a lovely top lip and chin, however my arm and leg hair is still there, but my leg hair is very fine now anyway but it would be lovely if the underarm hair would also disappear then I wouldn't have to worry about the numbness 😉.
@Fairie I have left my comment to you til last my lovely, because I wanted to wish you good luck🍀 with your second treatment tomorrow, I hope you find it easier than the first one. The way I do the posts to include everyone is to open my open office writer (it's equivalent to microsoft word/office but it's free) then I also open the June 2021 page and go through the posts, then I reply by just typing @Fairie etc once I have finished, I just copy and paste in to the reply to message section. I usually just click reply to the last post, as it always appears at the top, mind you I do use my laptop as would find it very difficult on phone or tablet,
I too apologise for the long posts ladies, but can I just say how much I appreciate each and every one of you, your replies and advice are always helpful and supportive and I do think that together we are stronger.
Good luck to us all, here's to health, happiness and a bright future ahead. After tomorrow I will be a third of the way through my chemo treatment doesn't that sound good! Sorry about the photo's think the chemo hat makes me look more scary than the bald head 🤣
Love to all
@Trowster I really hope that you are feeling better and make a full recovery over the next week. I did the Look Good Feel Better course yesterday and wanted to let you know that you don't have to have any make up beforehand - you can just watch. They then send you your goodie bag two weeks later with all the free skincare and make up in. There were some quite high-end products in there so worth getting!
@Heels to walking boots I don't get bone pain either until the last day or two of my injections and my bloods were always fine. However, on this new regime, I only had 5 days of injections. I had my blood test yesterday and today was told that my Neutrophils were at 1.4 whereas they need to be 1.5 for me to have my chemo. So, I had to go back in to hospital today for another blood test. As long as they get up to the right level, I will still have my next chemo on Friday.
All the best to @JessicaB for tomorrow. I hope it goes smoothly. Yesterday, I had my blood test done on the chemo ward and two ladies came in with strawberries and cream for everyone. One of them was dressed as a strawberry! With that and the friendly nurses, they do try to make the experience as nice as possible.
I hope everyone else is ok. I'm off to watch the tennis now. I'm more into it now since my trip there on Monday. Also looking forward to the football of course as well! I'm not normally into watching sports on TV but find that these are too exciting to miss!
Sending everyone lots of love. Sian xxx
Oh my lovely
I have tears in my eyes for you!
I send you love and heartfelt healing wishes for a full recovery.
love to your hubby too.. he sounds lovely!👏
This journey impacts our loved ones too 😔
much love xxx Sharon ( Fairie) xxx
wvat a lovely message and I’m amazed how you and others in this site mention everyone! Sooo special for us all!
I don't know how to do it and would love tips!
i tried the cold cap too and sure enough hair started falling out on day 13 and 14. Second dose tomorrow and will try Cold cap again but plan to take paracetamol 30 mins before if allowed.
I don’t know if I had any side effects from the 7 days of injections as there were several SE! I didn’t know what was doing what!
Huge congratulations on your marriage and I wish you both health and a long happy life together.......
thank you again for including me in your lovely message xxxxx Fairie ( Sharon)
❤️Just a quick tip lovelies, do take your own makeup too, in case what’s in the look good feel better bag is anything that you have been allergic to in the past, sometimes certain brands can be a no no on your skin ❤️ don’t worry if you don’t get brows and lashes right first time, it doesn’t take long with bit of practice. Brow stencils are good and just eyeshadow powder in the browns from Mia (6 in the pack) not sure if still available, so maybe some similar if not and a small stiff brush to dapple in through the stencil gives good brows if you don’t fancy pencil 😘hope that helps 🤞💕💕✨✨Shi xx
So sorry to read your awful ordeal, glad your on the mend and that you had good support and will get a break before next session. What a bloody nightmare this journey is.
Re the look good feel good not sure how it's going to be over zoom for 2 hour session but I'm happy to participate just waiting to hear when.
On the plus side of the hair loss ladies My whiskers have gone and hair on top lip is going 😁. I've not shaved my legs for 4 days either and they don't feel like hedgehog prickles lol.
Right time for bed.
I am so sorry you’ve been through the mill. However great to hear you have turned a corner and keeping everything crossed that you are soon feeling like you.
Jennifer, good for you booking on the course, I booked one last month then chickened out, I don’t usually wear make up and when I saw what I needed I thought it’s going to cost me a fortune, lol, but I might try one
@Trowsteri am so very sorry to hear about your ordeal, it sounds so frightening and bloody awful. Also had to google it. Hopefully you are on the mend and can get home soon.
@Heels to walking bootsDay 16 today for me and the cold cap seems to be doing its job (thank god as it wasnt pleasant as you also know). I have washed my hair twice since treatment (plus washing out of the conditioner when I got home) and comb it every day and so far no shedding or anything. Its super oily and needs a wash but im trying to leave it alone as much as possible and scarves come in handy for hiding the greasy hair! Unless something happens between now and next Monday then I will defintely put up with the pain and discomfort and do it again in the hope it keeps working. Also re the injection, I didnt get a single side effect, not even bone pain, until the day after the very last one and since then I have had a slight sore back, more like a needle is sticking into the bone on the side of my side. Not painful but i can feel it.
To everyone else, keep on being awesome, we've got this!!!!!
@JessicaB All the best for Thursday x
@Trowster @So sorry to hear about hospital admission, you have certainly had a bad time . Hopefully you will get home very soon . x
I have had a good day been on 2 small walks with my 2 miniature sausage dogs . Im on day 11 and have started having small clumps of hair coming out . I had read that some of you have put down for the look good feel good course . I have booked one , it is so out of my comfort zone as I normally keep my to myself. I think from being on here all you lady’s have given me a bit more confidence in speaking on here and not being judge . So I thank you all .
Apologies for not being online and not writing in soo long...thank you all for your kind messages , still getting used to being married lol .
@Trowster , sorry to hear that you got a C Diff infection (to be honest I had to look that up as I had not heard about it). I do hope you keep improving and are able to get home soon so that you can enjoy your birthday celebrations with your lovely husband.
@GonnaGetThruThis i couldn't agree more with your post ..i also have been just doing my normal routine and not even thinking about it...even managed to work. Although i will admit i do have times that i just burst into tears as i think about what we are going through. But each day that we get through is closer to the end..i am keeping that at the front of my mind.
@simplyeve , @Flower123 , @Fairie hope you are feeling better too?!
@simplyeve hope you have good anniversary celebration tomorrow. 42 years is definitely a celebration to be had! Hope you have a wonderful day.
@JessicaB -hope all goes well on Thursday! Will be thinking of you. Great that you are now on the road ready to kick this thing!
@hopeful1974 hope all goes well Friday will be thinking of you. and thank you for posting the booklet . Will take a look, as i am worried i am going the other way and eating too much as i am not doing as much exercise as before. So need to find a balance.
I am now day 12 and feeling good, i had a some bone pain which was not pleasant from one of the injections but thankfully only lasted 24 hours which also made me worry that i had not given the injections properly as i did not feel pain the other 6 six times! Also, my hair is still intact...they have warned me that day 13 will be telling if the Cold cap has worked. Either way i am prepared...as i thought i had nothing to lose to try and all to gain if it worked. So fingers crossed it has.
Apologies for the long message ...i will try to keep up with messages on my phone. But i do think about you all often and sending you all positive vibes.
Have a lovely evening
i feel I have missed so much, I can see there’s been a wedding so many congratulations, a scary incident with dogs n a van man so glad you got home safe with your babies, glad to hear so many of you are doing ok and managing the treatments well, as you know I was doing brilliant n even managed a bike ride on day 3, well day 5 I had a temp n had to go to the cancer ward, they gave me an IV of antibiotics n paracetamol and sent me home 3 hrs later, n said only call if my temp went above 38, day 6 I hovered all day at 37.9 n 38, but on Thursday it went crazy n up to 40.3, I was advised to go to AnE as there was no doctor on the ward, AnE fast tracked me through to majors n had a nightmare finding veins to get bloods, but they finally did then they put me on fluid drips, I was on a trolley for 10 hrs then a nurse swapped the trolley for a bed, at 8 am a doctor came to say my neutrophil level was 0.1 and I could not leave the room and they brought me a commode in, and they would try and get me moved to the cancer ward, they started me on more antibiotics and instantly I started being sick, 🤮🤮 then the severe trots 💩💩💩 started so embarrassing, at 8pm they moved me to the ward, they took a stool sample n it turned out I have C Diff infection, I’ve been visited by Infectious Disease Control and told that I must always declare this if ever they want to give me antibiotics again, as that’s what’s caused the problem, and here was I thinking the Chemo was going to make me ill, well it’s now Tuesday and I’m still in hospital, all my birthday cards n presents are still at home, hubby is not allowed in and I’m still confined to my room, but I now have an en suite and a window, the staff have all been wonderful, and my hubby has been a star, bless he couldn’t keep up with the demand for fresh pants n pjs, so he went to Asda n bought me 12 pairs of pants n 5 new pj sets, things have now settled down and in myself I feel really well, just hoping my bloods show good results tomorrow, my Onc came to see me today but wouldn’t come in my room, he is delaying my next treatment by 1 week so I can have a weeks rest when I get home, he’s also going to reduce the doseage, my hair is falling out quite fast now, I’m shedding worse than my dog, 😂 but hopefully I may get home in another 48 hrs, sorry for such a long saga, hubby only brought me in my I Pad today as I didn’t feel up to logging on any earlier, I hope none of you ever have to experience C Diff
@JessicaBhonestly people say positivity is such a big factor in getting through this and i really beleive it. Once i got over the initial shock of it all and was going through the process, i moved from thinking 'this is it, im going to leave my young daughter without a mother to 'this is literally just an inconvenience and we just have to get through it'. From before day 1 of treatment I tol myself that i will try to stick to my normal daily plans/activities and then adjust if necessary. I had backup plans of course (like hubby to take our daughter to school and a friend to collect her if i wasnt up to it) but I told myself that i would be totally fine and could handle it. Saying that though, last week I was sort of waiting for something to happen. i just assumed that i would be ill to some extent so kept waiting for it then my husband told me not to think like that and just carry on as normal and yes if i do get ill/tired etc then we will handle it (with those back up plans lol). It made me change my thinking and its why this week i have sort of 'forgotten' about the C word and going about life as usual making plans etc (cause i know next week after Monday treatment things wont be as good).
Also i definitely think it is easier to process everything once it has all started and you have definite plans and things to do, rather than just waiting around and wondering when/if things will happen.
Sorry for rambling, and also sorry for those that are struggling, hope that you all feel better soon.
So glad to see some of you are having some days with improvement and sorry to read that some of you aren't 😞 It really is a roller coaster.
The book link is great - I was given a diet leaflet but not as comprehensive as that so its really useful to share.
I think I am ready as going to be. Actually feeling quite up beat and in a positive mood, perhaps as things are moving on now. I have no doubt that will change but everyone but everyone who I have spoken to says a positive attitude is the way to go.
Re bloods - when I visited pathology they weren't trained to use my picc line (neither are my local surgery) so had to use the other arm but any lymph node clearance means no tourniquet apparently so they have to get a vein without which can be tricky. As my chemo was delayed the bloods expired so I had to go to the chemo suite on Thursday where they did use the picc line.
Planning a glass of wine or two with dinner tonight as it will be the last for a while!
Lots of Love Jess
@GonnaGetThruThis great to hear you are having a good third week.
Jessica sending you lots of positive vibes for your first session.
Louise. Sounds like you’ve had a better first few days than last time and I’m really pleased for you.
I am not as good as last time. I think the hospital stay took it out of me and I’m more anxious this time round about any little twinge or niggle. Other than slight sore gums like last time and the total lack of energy I’ve nothing else to report thank goodness. The positive is that the energy levels seem to be getting better day by day 🤞. I don’t think the miserable weather helps as it impacts on mood and drive. Hey ho knowing British weather we will be back baking hot in a few days 😂
Wishing everyone else a good week. Thank you Hopeful1974 for the book link. Interesting and useful reading.
@GonnaGetThruThis Glad to hear you’re feeling normal again. I agree with you about the false sense of security thing but still over the moon to have these good days!
I had my blood test today and it will be followed by clinic tomorrow (over the phone this time) and my next chemo on Friday. That will be the pattern each time. The clinic is to discuss how you have been feeling so I tend to make a note of my side effects as I go along and also note down any questions for the oncologist. The clinic is the only time I see him, so I make sure I ask for any medication I might need. xxx
Glad to hear your feeling ok on my 3rd week I felt like the old me much more energy and wanting to do things.
The bloods are to check your all within range mine were very good apparently and the pre assessment I only had checks at my chemo app so BP, pulse, temp.
I'm also waiting on my genetic bloods but mine won't change treatment now unless it's faulty then I will have full mastectomy after all this is over and my family will get checked.
I'm now bald with the odd tuft which at night can be weird as I get hot flushes but head is cold so can't put anything on it. I've also got a mouth sore so prescription has been requested and I've made sure I've got easy things to go down just incase. Other than that day 5 is OK odd nausea, heartburn and hotflush. Mouth tastes yuk and weary.
@Impatience how are you doing hope all ok.
@JessicaBhope all goes well Thursday, will be thinking of you.
Hope everyone else OK and coping with any unpleasantness.
Love Louise xx