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March 2022 Chemotherapy starters

203 REPLIES 203
jules_n
Member

Re: 'mRe: March 2022 Chemotherapy starters

Hello again March ladies, it’s so good to hear of your progress @ML2022. I had my final chemo just over a week ago, so I’m 5 weeks behind you. That’s great news about your hair! I just have a kind of white fluff growing- not a good look at all, it’s like you might see on an elderly man 🤣 but you’re giving me hope! I’ve had Covid this week, and the antiviral meds, so it’s been a bit miserable but will surely start to pick up soon. I have 2 post chemo scans next week, CT and axillary ultrasound. I should get a decision after that on radiotherapy and/or further LN surgery. 

Wishing you all the best with your radiotherapy, keep the updates coming.....love, Jules XX

maggiemoo
Member

Re: 'mRe: March 2022 Chemotherapy starters

Glad you are feeling a bit better @ML2022 good luck with the radiation. It must be such a relief to get the port out, I cant wait to get my tunnel line out. Round 5 for me on Monday, had a better time this cycle, hope it continues  into the next one 

Hugs to everyone 

ML2022
Member

Re: 'mRe: March 2022 Chemotherapy starters

Hey everyone,

I'm now 6 weeks after my last chemo and I'm finally feeling some real progress. I feel less achy this week, and maybe a little less foggy although I still do plenty of dumb, not-too-well-thought-out things. And I lose stuff all the time. But I do feel a turning point now, one of those jogs in the path when I feel like I'm getting much better.

I got my port out yesterday and it's wonderful not to feel it in my chest anymore even though it's kind of sore right now where the big round part used to be. It's so nice not to have any tubing crossing over my collarbone anymore, too-- that was never comfortable.

I met a woman in the clinic today who had lovely short hair and I asked her how long it took to grow in and it turns out she's only about 6 weeks ahead of me in her treatment-- so in another 6 weeks I'm hopeful that I'll have enough hair to feel comfortable and look as good as she does! It is growing, I can just barely see it in the mirror even without my glasses on, but there's not very much of it yet and I still won't go out in public without my wig on. Just the fact that it's growing makes me feel like I'm on the mend. My nails have started growing again, too. You can sure see where the chemo treatments started!

Tuesday next week I will start radiation. I'm getting 24 treatments to the whole breast, and then I think they're planning 5 or so focused treatments to the lumpectomy site. So by mid-August I should be finished with all my treatments except for the oral hormone blocking medication. What a long run this has been.

Hope you're all doing well.

 

ML2022
Member

Re: 'mRe: March 2022 Chemotherapy starters

Just to add a bit more to this thread, I'm finding that it's not a straight line path from chemo to wellness. I'll feel like I'm gaining strength and back to normal, and then I'll go right back to where I was a couple of weeks ago, only able to do minimal activity and feeling sore and lying on the couch in the middle of the day. And then back to feeling better again-- usually a little bit better than before. It's a jagged path full of peaks and drops, but overall moving in the right direction, just slowly. Also my mood is unpredictable - I thought I'd be nothing but happy after chemo but I'm having more trouble with depression than during chemo. I'm in counseling and it's helping.

Thanks, @NickyC75 for the reminder that chemo drugs are so powerful and how long they take to clear out of our systems. It helps with setting realistic goals for myself.

You ladies all help so much. I also have trouble talking with people around me about it. Most don't get it, and even if they do, it's not what I want to focus on with them. It's going to be a struggle to stop thinking about cancer when the treatments are all done, and move on to other things, and let the potential for future cancer lie in the future.

I find I don't want to drink alcohol anymore 😮 so I'll raise my tea cup to us all and wish us a peaceful, steady, and satisfying recovery. Thanks for all the support! It would be so much harder without it.

Shi
Community Champion
Community Champion

Re: 'mRe: March 2022 Chemotherapy starters

Nicky ❤️ You carry on being fabulous Nicky and don’t put too much pressure on yourself, just do it your way, ❤️ Love, laugh and live ❤️ That all we can do ❤️💕💕Shi xx

maggiemoo
Member

Re: 'mRe: March 2022 Chemotherapy starters

Lots of love everyone, even if you have finished chemo please do stay in touch here, I think about you all 

💪

NickyC75
Member

Re: 'mRe: March 2022 Chemotherapy starters

Hello all you lovely ladies, thank you very much for your kind and supportive responses. It really does help to know that I am not alone. It is really hard to explain to someone who has never experienced it - reading your replies has made me feel it is ok to feel as I do.

Not sure if I have already said, in hindsight, when I said it out loud, what I was trying to do and the expectations I placed on myself from the day I finished chemo was ridiculous. No wonder I completely crashed at the end of 2 week mark after chemo. I literally spent the week laid on the sofa feeling really unwell. I have read a Dr’s article on a cancer website that said to expect it to take 2 months to recover for every one month of chemo before you start to get energy back.  A pharmacist we know talked to my husband about the strength of drugs we have had at chemo and how even the Tamoxifen are extremely powerful - people do not understand the impact it has. I have tried to take it easier and trying to go a bit more slower at getting back to tennis! 

@jules_n  - congratulations on finishing chemo. 💕 You have done amazing and been so brave. I hope you are going to celebrate or treat your self for getting through the gruelling process. In one of my cards, from a lady who had cancer 10 years ago, said it was so I could have a ‘long, happy and hairy future’!! Hopefully the next few months will see you get stronger and stronger each day. Xxxx

@maggiemoo , I am glad your treatment is going a lot smoother than it was. I hope the side effects are not too severe. Xx

@ML2022 thank you for sharing how you are feeling. I am exactly the same with aches, which makes me paranoid something is wrong. I literally feel I can do one thing a day and then know I will be wiped out for the rest of the day. I hope your energy levels will return soon. I appreciate your advice xxx

@Sunshinesonia you must let me know how you get on with Tamoxifen. So far I am not sure if I have side effects or if it is the chemo leaving my body! Xxx

Thank you @Shi for your words of wisdom. It is great to hear from someone who has ‘come out the other side’. I am signed off work until Oct so going to try and use that time for a bit of self care, hopefully. I am trying to put work out of my mind but know I will have to face it at some point. 

Love to everyone still going through treatment and all of those recovering. It really was great to hear from everyone again. 💕 xx

 

jules_n
Member

Re: 'mRe: March 2022 Chemotherapy starters

Hi @NickyC75  and everyone on our thread. The replies you’ve had have been so reassuring, this journey we’re on really is a marathon- actually several ultra marathons I’ve come to realise! 
I have my final chemo today. I had a hospital admission 10 days ago with an infection, but responded fairly quickly to a cocktail of antibiotics. I had to call the Cancer Helpline on a Saturday evening, and they arranged everything really efficiently with my local hospital. But it’s taken me until now to have a bit more energy- it will all go downhill after today ☹️ But maybe this will be my last week of feeling really bad, and I’m so looking forward to a gradual improvement. 
I may try some counselling too, but waiting to find out if I need further treatment after I have my follow up scans. 
Please keep updating us on how you’re getting on, love and best wishes to all, Jules XX

 

ML2022
Member

Re: 'mRe: March 2022 Chemotherapy starters

Same here! I'm 5 weeks past my last chemo and I have what you have! my legs hurt, my upper arms hurt, I'm exhausted. My doctor said to stretch and let him know after a week whether it helped with the muscle aches. It makes me feel more flexible but I still hurt. I am gaining strength little by little-- I can do a little bit more every week -- but tennis? Good God, no, I don't think so. I can walk a mile or two or three. And it hurts.

I think we need to think in terms of 6 months or a year to get back to where we were before chemo or want to be after chemo. Kind, gentle expectations of ourselves. I went camping with my husband this past week and we had to come home early just because I was so tired I wasn't having fun anymore. But I did it! That's the thing that counts. We need to listen to our bodies and take good care.

Strength, hope, and well wishes to all!

maggiemoo
Member

Re: 'mRe: March 2022 Chemotherapy starters

Hey @NickyC75 

Just be kind to yourself, you have been to hell and back, give yourself time to heal properly feel compassion for yourself, and dont be pressured into feeling ok straight way. I am sure we will all come out of this differently and must just deal with ut day at a time. 💪

I am 2 weeks into 4th cycle luckily all ok this time , hope everyone else is doing ok too 

😘

Shi
Community Champion
Community Champion

Re: 'mRe: March 2022 Chemotherapy starters

Nicky ❤️ Your doing great and nothings unrealistic ❤️ Like I always say do everything in your own time and your own way walk to your own drum beat and be 😁 the jigsaw puzzle pieces to fit back together and one morning you wake up and you just feel like you y you again, Well tgsts how it was for me, I can’t explain it but it’s such a lovely feeling. I did use spirit and soul equine therapy in derbyshire Macmillan funded 4 sessions and I had few more after that I paid for. The lady who owns and runs it is a tnbc survivor herself so for me it was perfect fit, everyone finds what works for them and your councillor sounds wonderful ❤️ Pinging back is different for everyone so be kind to yourself ❤️ You are fantastic 😁 don’t you forget that ❤️💕💕Shi xx

NickyC75
Member

Re: 'mRe: March 2022 Chemotherapy starters

Dear @Sunshinesonia  and @Shi ,

Thank you very much for your response. I can’t tell you how much it has helped me to know I am not alone. When I read my post back, I realise it does sound completely unrealistic to expect to be normal after all of that treatment. I have honestly felt worse than when I was having chemo.

I also spoke to my counsellor yesterday and cried through the whole session - I have not cried since before my chemo. She said I was putting too much pressure on myself to get back to work, do housework and catch up with friends (or rather feel guilty as I can’t face meeting up) and that I am not on holiday, I am off sick and to recover! 

My husband spoke to some of the ladies at his work, who have gone through breast cancer treatment, and one lady said it took her at least 15 weeks to start to feel better and get some energy back. She could only manage to return to work part time as the fatigue was too much.

I had also had my Herceptin injection last week, which does seem to make me ache. I feel like I am about 40 years older! 

I was putting off taking the Tamoxifen and has the tablets 4 days before I took one. I had been feeling so terrible I did not want anything to add to that. I am hoping I will be lucky and have minimum side effects. Today will be my 5th day of the tablets so difficult to say as yet. 

Thank you again for helping me. Xxx 💕 

Sunshinesonia
Member

Re: 'mRe: March 2022 Chemotherapy starters

@NickyC75  your not alone I've been feeling really flat and numb, i'm grumpy with everyone and everything is just such an effort!!.

I imagine it's a combination of everything, surgery, chemo and the journey we've been through. I was chatting to a lovely volunteer yesterday and she was saying we've probably been running on adrenaline and that's what got me through chemo & radio. 

I had my herception injection yesterday and was chatting to the nurse asking what happens next and should I be returning to work. She did laugh and say most people have at least 2 months off after treatment because of the side effects and that I was trying to run before I could walk! 

So just be kind to yourself Nicky and rest when you need too. Our bodies have been through so much. 

I'm also starting Tamoxifen next Thursday, really apprehensive about taking it. 

Sending love and hugs 

Take care

Xx

 

Shi
Community Champion
Community Champion

Re: 'mRe: March 2022 Chemotherapy starters

Nicky ❤️ Crikey superwoman ❤️ You are doing amazing ❤️ After chemo and rads was probably few months before full pizazz back so be kind to yourself ❤️ I went back to work full time a month after finishing rads which was 3 months from finishing chemo ❤️ It’ll happen, your jigsaw puzzle pieces will all click back into place and everyone’s timing of this is different ❤️ You walk to your own drum beat ❤️Then you can’t go far wrong ❤️💕💕Shi xx

NickyC75
Member

Re: 'mRe: March 2022 Chemotherapy starters

Hello March ladies,

How are you all? I hope those still going through treatment are doing well. Hopefully there is not long to go. 💕 

I was just hoping to ask those who have finished chemo how they are feeling, if they are still accessing the forum. I will have finished chemo 3 weeks on Wednesday and this last week I have felt rubbish. I am not sure if I have a virus, covid (4 negative test results), severe hayfever (I don’t normally suffer), Tamoxifen (only been on 4 days), chemo coming out of body, menopause from chemo, or all of the above 🤷‍♀️.  I cannot describe the exhaustion - I can’t be bothered to speak, which is not like me. My legs are aching and everything is such an effort. I am a bit breathless when I do anything too. 

I did throw myself back into playing tennis and I think I was just running on adrenaline and then crashing after. Maybe I have used up the little I had left in my tank. 🤷‍♀️  I have not played the last week now.

Is this normal? Has anyone else felt like this?  I suppose I expected to be back to normal straight after but I am clearly not. I also feel all my family and friends expect me to be normal, so I am putting pressure on myself. I just feel really frustrated and miserable. Physically and mentally I feel I am exhausted and am scared this is my new normal. I feel I am zapped of all my energy.

It would be lovely to hear everyone else’s experience. 
Thank you, 

Nicky xx

ML2022
Member

Re: 'mRe: March 2022 Chemotherapy starters

Congratulations @Sunshinesonia that's awesome that you finished radiation! I still haven't started. I'm told calendula is great for treating radiation skin, you can infuse the flowers in just enough olive oil to cover on a low heat for an hour or two and use that, or you can buy great calendula creams made from some combination of beeswax/mango butter/shea butter etc. I've been using it to clear up the skin damage on my face. You all seem to be very well clued in on great products, much better than we are here, so you probably already have something good to use but if not, try that. Enjoy your appointment-free week!

ML2022
Member

Re: 'mRe: March 2022 Chemotherapy starters

That's really great news, @maggiemoo! So glad everything's resolved and you can finish your chemo! We're all rooting for you to have no more complications. It won't be too long now before you've got all this behind you!!!

Sunshinesonia
Member

Re: 'mRe: March 2022 Chemotherapy starters

That's great news @maggiemoo puts your mind at ease.

I finished radiotherapy yesterday....so now have a rather sunburnt boobie🤭.

Next week I have a hospital free week which I'm very much looking forward too. I cant remember I had a week like that. 

Take care and have a good weekend too

Xx

maggiemoo
Member

Re: 'mRe: March 2022 Chemotherapy starters

Hi @jules_n @NickyC75 @Sunshinesonia @ML2022 

Thanks for all your support, saw my oncologist yesterday for all the results of the tests post being in hospital, everything is fine, no abnormalities so chemo resuming on Monday session 4 of 6, they will reduce the steroids mire slowly this time in case that was the reason for collapse, but not really been given a definitive reason for this. I am now on a blood thinner because of the AF although everything has settled. My allergy has still not cleared properly and I suppose wont till they take the tunnel out post chemo.

Have a good weekend all and stay positive 

NickyC75
Member

Re: 'mRe: March 2022 Chemotherapy starters

Morning everyone,

Thank you for asking @jules_n . I am not as far on as @Sunshinesonia  and @ML2022 . I only finished last Wed so would have been due to have chemo today. It felt great not having to go and get bloods on Monday and I am sure if will feel better not having to go and spend a day at hospital. I dreaded the finding the cannula part as time went on but on my last day, they found it first time! My husband are going out for the day and doing something nice! 

My son and husband and son came in for me ringing the bell. It was really emotional. I had definitely been watching to much ‘Selling Sunset’ as I nearly ding donged it off the wall - Chryshelle style! 😂 

Like @Sunshinesonia  and @ML2022  - I feel a bit war wounded! Spots are improving but not gone (finished my third round of antibiotics) for folliculitis and I won’t make you sick by my toenails. I used Polybalm on my fingernails and they have stayed stronger than before chemo but I stupidly thought toes would be tougher. 5 black toenails and two others lifting off. 🤢 Great look for summer! 

I managed a tennis tournament on Saturday but I was so sick that evening. I probably did too much but it felt good being me again. I was completely jelly legs and arms by the end! Still got to the final though 😉 😂 

I am proud of getting through it but know it is not over and I kind of resent people saying it is over. I meet my oncologist next week to discuss what happens next. Think it will be Tamoxifen so menopause here I come! I am already having hot flushes at night. She seemed pretty sure I would not need Radiotherapy. I want them to throw everything at it!

I am seeing a counsellor, which I think helps. I am trying to be positive but there are a lot days where I think, ‘what the hell happened?!’ I also have many days/times scared of the future. My friends who have had cancer in the past said it eases and fades over time. Starting to play tennis again makes me feel like me again and makes me forget. For the last 6 months I have just been cancer (hate that word) - now I want to reclaim my life back but I know it is not going to happen over night. 

I am trying to turn around my view of my body too. It has gone through so much and yet is still standing. We all need to be so kind to ourselves, physically and mentally - easier to day than do! 

I hope all the other ladies are still managing. @maggiemoo , I know your’s was delayed but hopefully you are back on track. Keep going, you are doing amazing! Please let me know how you are getting on. 

Love, strength and power to you all 💪🏼 ❤️ 🦸‍♀️ xxxx

jules_n
Member

Re: 'mRe: March 2022 Chemotherapy starters

So good to hear of your progress @ML2022 & @Sunshinesonia .

Really gives me hope that I’ll be following you soon. I have my last chemo on 24th June, so maybe by mid July my brain fog will be lifting! I’m also looking forward to getting a bit fitter again, having always been active. I’m in my early 60’s and retired, but there’s no way I could have worked through chemo, I’d have been a complete liability! 
Love ❤️ and best wishes to all, Jules XX

Sunshinesonia
Member

Re: 'mRe: March 2022 Chemotherapy starters

@ML2022 I'm 2 weeks past finishing chemo and starting to feel a bit better. My nosebleeds have stopped and bowel movements have started to return to normal! 😁

I still have numbness on my right heal, finger nails have brown patches and are tender.

Glad you mentioned the skin damage on your face, I have this too. Its worse on the left side and looks like the skin pigment has changed. 

I started radiotherapy yesterday, thankfully its only 5 days. My breast is feeling sore, so back to wearing my comfy sports bra. 

I'm starting Tamoxifen at the end of June!

Next week is the first week in months that I don't have any hospital appointments.....such a good feeling 🙂 

 

 

 

 

 

ML2022
Member

Re: 'mRe: March 2022 Chemotherapy starters

@jules_ngood that you're feeling less nausea this time. I was lucky, I didn't have nausea with my chemo.

I'm 3 weeks past my last treatment today. Overall, I feel a lot better already, just like in previous cycles when I'd be feeling nearly normal by the time another treatment rolled around. But I'm a lot more tired than last time and my legs and arms still hurt. I have skin damage on my face that I didn't have before-- wrinkled, leathery skin on my cheeks and around my eyes-- I'm wearing more sunscreen, washing with witch hazel, and using calendula-beeswax salve to try and soothe my skin until new skin grows in. My hands, feet, and nails are still brittle and need a lot of salve throughout the day. The good side is that my taste is normal, my brain is clearing, the tingling in my fingers and feet is gone, my stomach is fine, digestion is fine (no more constipation!), I can eat normally, I'm able to do my routine stretches again although not nearly as many as before chemo, and I can walk farther with my dog. So my energy is returning, just taking its time. My hair has grown a tiny bit -- I can feel stubble poking through my hat.

Best of all is that I have a tremendous sense of accomplishment that I made it through to the other side! And you will, too,  @maggiemoo @Sunshinesonia! and others I haven't met through this forum but may be reading these posts.

jules_n
Member

Re: 'mRe: March 2022 Chemotherapy starters

Hi @maggiemoo , I hope it won’t be too long until you see your consultant and can continue with your chemo. I’m the same as you- 6 cycles then probably ANC and radiotherapy. I had my second Docetexel last Wednesday, and this time they gave me the single long acting G-CSF injection, instead of the 7 daily ones. I’ve had much less nausea- yay to that!!- but still aching and tired. 

@NickyC75 and @ML2022 , that’s great that chemo is over for you- how are you both feeling now? 

maggiemoo
Member

Re: 'mRe: March 2022 Chemotherapy starters

 Glad for you @ML2022 @NickyC75 My chemo has been postponed  again for a week, my consultant wants me to have the echo first and wants to discuss everything that happened the last couple of weeks, I am supposed to have six sessions then my lymph nodes out then 3 weeks radiotherapy

 

Hope you all enjoy the jubilee weekend 

ML2022
Member

Re: 'mRe: March 2022 Chemotherapy starters

Congratulations to you, too, @NickyC75! Good to know about the six weeks. It feels great to be done. Already looking back on it, it seems worse in hindsight than I allowed myself to feel while it was going on. I don't mean it was easier than it seems now. I mean I just couldn't let myself admit how bad I felt. So that must mean I already feel a lot better! We are so resilient, all of us.

NickyC75
Member

Re: 'mRe: March 2022 Chemotherapy starters

Well done @ML2022  for getting to the finish line. It is amazing you are 2 weeks finished. My chemo nurse said that it stays in your system for at least 6 weeks so it is not surprising you still feel tired. 

I hope all the other ladies on this thread are doing well. X

I completed my treatment yesterday and rang the bell. I am so grateful, relieved and glad to be out the other side of chemo, but I have such mixed emotions. It does not feel like it is all over. I am feeling like hibernating again. I went out for tea with my hubby and son to celebrate but I was just exhausted and felt really nauseous (it was a nice idea but was way too early) which I have not felt throughout the whole treatment. Went straight home to bed.

I am meeting my oncologist in a fortnight to discuss the next steps, which will probably be Tamoxifen and obviously continue with Herceptin. I am already having hot flushes every night from chemo so I am expecting more to come with Tamoxifen. 

Is anyone doing anything nice for the Jubilee? Whatever you are doing, I hope you have a lovely weekend and feel well enough to enjoy it with your family. Xxx

ML2022
Member

Re: 'mRe: March 2022 Chemotherapy starters

@maggiemoonext is radiation starting sometime in June (I'm not sure when). I think it's about 25 treatments in all, once a day 5 days a week. I'm told it's also tiring and it can give skin burns but otherwise not too bad. Then after that is 7 years of hormone blocking medication. That might give me a second menopause - hot flashes, moods, no sex drive. Cause once wasn't enough!

maggiemoo
Member

Re: 'mRe: March 2022 Chemotherapy starters

I am half way through no 4 on Monday, what comes next for you @ML2022 

Stay strong

ML2022
Member

'mRe: March 2022 Chemotherapy starters

Yes, I'm also so pleased and relieved to hear your MRI results, @maggiemoo! AF is indeed very manageable once it's diagnosed so hopefully very soon this and the allergies will resolve and you can concentrate again on finishing chemo and resuming life. Sounds like you were already well on the way, planning trips and so on, and you will again.

I'm 2 weeks past my last treatment and still finding it harder to bounce back this time. My legs still hurt and I'm all-over tired most of the time. I did some de-cluttering yesterday (piles of stuff around the house have grown during chemo!) and it might have been too much for me, because I took a 2-hour nap yesterday and I'm sore today. But I do know that I'll get better and I won't have to do chemo again. I feel like my mind is clearing some after only 2 weeks and that's encouraging.

Hang in there, all! wishing you smooth sailing this week.

 

 

maggiemoo
Member

Re: March 2022 Chemotherapy starters

@NickyC75 thanks, it is a relief I feel fine in myself, a little more nauseous this round, on Friday before I passed out we were sat having dinner and planning a couple of day trips and even possibly a night in b &b I felt that confident, now the confidence is gone I am scared I might pass out again,  may do a day trip sometime before next chemo if I get the confidence back, just enjoying the garden and yes still painting

 

Thanks for the tip on Headcovers.com have ordered an underwig hat and a couple of other hats

Thanks for the support, stay strong and positive all of you 

NickyC75
Member

Re: March 2022 Chemotherapy starters

@maggiemoo , I am so pleased and relived for you. I can’t imagine how worried you must have been. I hope you are going to have a little (or bug) celebration! 👏🏼 

At least they have identified the AF (I looked up what it was) and they can monitor and treat it if necessary. Apparently there is a higher incidence of AF with bc. We will send you more positive vibes tha this gets sorted.

How are you in yourself? Are you still managing to get out and about?  Are you still managing to paint? 

I hope every else is coping. Sending you all love and strength. Xxx

maggiemoo
Member

Re: March 2022 Chemotherapy starters

Hi everyone, good news the MRI shows no masses or abnormalities  in my brain  I can not tell you how scared I was and the relief is immense

Have a flare up of my skin allergy so back on antibiotics waiting now for an echo to confirm the AF they found and to discuss the hospital discharge report with my doctor as it is not an oncology  team issue, unfortunately  our surgery only has the equivalent of 1 doctor and have to wait till 8th June for even a telephone appointment, 

Hope you are all doing ok with this round 

Hugs 

Sunshinesonia
Member

Re: March 2022 Chemotherapy starters

@maggiemoo sorry to hear you've had a set back. Sending you big hugs. 

Keep us posted.

Take care Sonia xx

NickyC75
Member

Re: March 2022 Chemotherapy starters

@maggiemoo  I am so sorry your are going through such a difficult time. I have everything crossed and prayers said for you that you will get some positive news. @ML2022  is right, we are all there for you and sending our love.

 

Thank you for all your help about the wig @ML2022 , @maggiemoo  and @Shi . I don’t mind putting money towards it. If it makes me feel more confident and less self-conscious I will pay it. It was just frustrating to wait 10 weeks and walk out without one. In the big scheme of things, it is not important. 

Wow! Well done @ML2022  on finishing TC. You must have felt relieved to see the back of it. It really is amazing the medicine we are lucky enough to receive but mainly our bodies for coping with it. I feel I could do with some of your super powers @jules_n ! I hope all of our battered and bruised bodies are putting up that fight inside. It is great your body is responding so well. 


I feel we all deserve a big glass of champagne when this is over (or a massive slab of chocolate)!  Love and strength to you all. Xxx

ML2022
Member

Re: March 2022 Chemotherapy starters

Oh @maggiemoo I'm so sorry you're going through all of this! Yes, please do keep us posted, we're thinking of you and sending you all the best vibes and well wishes to get through this piece of the journey with all of us walking with you.

@NickyC75I also can't see all the posts while I'm replying but my browser has a "view discussion in popup" link under the reply I'm typing, and if I click on that, it opens a new tab with all the posts in it.

I do have a mesh cap to go under my wig, it's meant for holding hair (if you have any) under the wig but it's softer than the wig itself so I wear it. It came with the wig so I'm not sure where to buy one, but the website where I bought some scarves (headcovers.com) also has little bamboo sleep caps that might work well under a wig. The bamboo scarves and headbands I bought are so soft, I think the little caps would be good under the wig, I just haven't bothered to try it yet. I only wear the wigs out in public, the rest of the time I wear my caps and scarves. I still can't bear myself bald. I may never come to peace with that.

I had my 4th and last TC treatment last week, it was the worst so far but I will not have to go through this cycle again! I'm on day 6 now and not where I used to be after the same amount of time in earlier treatments. @NickyC75 the brain fog is so real! Also I'm still weak and achy in the legs and have no energy at all, and yes, sleep is disrupted even after the steroids are worn off. Fortunately some of the nerve and skin effects are less this time, but the overall feeling of being poisoned is a lot worse and it's a lot harder to keep up my spirits. We really are going through so much. I still can't think deeply about it too often but when I do, I think we're all remarkable in our strength and ability to get through all of this. We will recover! I'm told that recovery happens really fast once you stop getting treatments.

My tip of the week that it took me 2 months to learn is that sweet fruit takes the bad taste away in my mouth. How did I not figure this out sooner? Maybe it wasn't true for the earlier treatments - chemo is sneaky that way; some things have changed each time.

Wow, @jules_n that's a crazy great response to the injections! You shouldn't have any worries with fevers! I have not had as strong a response but it's strong enough to keep me from getting infections. So sorry you've been struggling with nausea. Do they give you supplemental nausea drugs? I have Zofran, Compazine, and Ativan on hand at home in case I need them for nausea, but I haven't needed them except for the Ativan for sleep and anxiety (it's wonderful for that). Maybe you can get some supplemental drugs for home use, if you don't already have them.

Peace and strength to you all! We will overcome this.

jules_n
Member

Re: March 2022 Chemotherapy starters

Sorry to hear you’ve been so ill @maggiemoo & that AF has apparently joined the mix along with everything else. We’re all thinking about you, hope they get you fixed up with an effective treatment as soon as possible and you’re able to get home XX Please send an update soon X

I also haven’t been well since my first Docetaxel, but I’m blaming the G-CSF daily injections. Had severe nausea, could hardly get out of bed for a few days, along with the back and leg pain I was expecting. I ended up getting a bit mutinous and refused to take the last couple of injections, so they arranged blood tests. The results showed sky high neutrophils, so I was kind of vindicated, and I seem to have had some kind of super-response to the drug. I might put a separate post up about this, to see if anyone else has had it. 
Love to all the others who started in March, we’re over two thirds there now, what a challenge and it’s far from over yet! 💪😍

Shi
Community Champion
Community Champion

Re: March 2022 Chemotherapy starters

Maggie moo ❤️👭❤️We’ve all got hold of you tight ❤️ Hope the ecg goes well, please keep us posted ❤️ Lots of us had casa nhs stays during chemo ❤️ It’s how it can be occasionally ❤️ Everyone should be able to see all posts on the thread as they get posted. If anyones having any problems please let me know and I will raise with the mods for you ❤️ Keep focused everyone ❤️ And keep each other 😁💕💕Shi xx

maggiemoo
Member

Re: March 2022 Chemotherapy starters

Hi @NickyC75  I think we see all the posts, nit sure but if you put in @ a list of names comes up for people in this group @ML2022 @jules_n @Eyes_In @Shi dont think it's all though, is that something you can answer @Shi 

My treatment has gone awry, I collapsed on Friday night and have been in Hospital all weekend, during tests it appears I now have an Af which will need treating, waiting to have echo to confirm ECG. Also unfortunately a lesion has been picked up on my brain by cat scan, I have had an MRI am waiting at home for oncology call to confirm results of that. Been on drips and antibiotics all weekend. 

I had voucher of £120 for my wig, but paid further £100 to get a nicer one, more like my own hair, however it's so darn itchy I cant wear it for long, I think you can buy some stockingette caps to go under but nit found any, anyone else bought one 

Stay strong everyone be kind to yourself  x

Shi
Community Champion
Community Champion

Re: March 2022 Chemotherapy starters

Nicky does your Macmillan at your trust have pre loved wigs they used to im not sure how things are after pandemic but worth a try ❤️Also luvyababes has nice wigs and do have people with hair loss through chemo or alopecia getting wigs from them also places on markets and pop up shops tgat do make up and hair products have good selection of wigs and again are used to people buying from them and are so kind they will make you feel comfortable and don’t mind how many you try on ❤️ And you can usually pick them up for around £30 unless you go rapunzel then they can be a bit more ❤️Hope this helps ❤️💕💕Shi xx

NickyC75
Member

Re: March 2022 Chemotherapy starters

Hello everyone, 

I hope you are all managing the side effects. It is definitely harder as it goes on. Having to inject yourself sounds particularly difficult. Women are made of tough stuff. 

I have two more Paclitaxel left now. Really feeling the tiredness and aching legs and hips. It could be that I have been doing a bit much recently. Going to have to get third round of antibiotics for scalp and face. 😥  Is anyone having a disturbed sleep? 

My NHS wig finally arrived but was faulty. I looked like a bad 80s hairstyle as the fringe would not sit flat. The lady is sending it back as she said it is faulty - I can’t wait another 10 weeks for one! She also said the prices of wigs have gone up and I will now have to pay £100 towards it, which I think is unfair as it was covered by the voucher when we ordered it. 

When I reply I can only see the last message so it is really hard to respond to different posts and personalise them. I have a memory like a sieve at the minute. I just wanted to say to the March gang, and in fact anyone going through chemo, that I am thinking of you all and sending you lots of love and strength. 

Nicky 💪🏼 🦸‍♀️ 💕 xxx

ML2022
Member

Re: March 2022 Chemotherapy starters

@maggiemooI haven't had to self-inject for wbc, they give me a shot the day after chemo for that. It does cause bone pain, mine was significant the first time. I now take Claritin twice a day for a week starting on the day of injection plus ibuprofen and CBD tincture (about 8 mg dose of CBD) 4 x a day, and that helps enormously. Legs feel shaky but not painful. Also still taking Ativan occasionally for sleep especially in the first week after treatment and boy does that work, those steroids really mess with my sleep patterns.

I hear you on the plasters! Next time I need ANY kind of surgical procedure I'm not letting them put any tape on me. They can use old-fashioned stitches and paint me up with iodine instead.

Also, for those of you with bad constipation (mine's gotten worse and worse with each treatment), I've settled on 2 Senna-S tablets twice a day, 2 to 4 Miralax doses a day, and only soup, fruit, and smoothies for the first 4 days after chemo. So far, so good, although I am REALLY craving bread with cheese, and cake.

Shi
Community Champion
Community Champion

Re: March 2022 Chemotherapy starters

Maggie moo ❤️ The injections are common to help your wbc ❤️ Lots of us have had to do them, do as your team has instructed you and do ask them to show you if you are not confident or anything ❤️ If the give you bone pain then Epsom salt baths were a go to for a lot of us to ease the bone pain they sometimes caused ❤️ But do always  check everything with your team ❤️💕💕Shi xx

maggiemoo
Member

Re: March 2022 Chemotherapy starters

Hope everyone is ok this week, had third round on Monday not straight forward again because they could not get blood out of the tunnel line (fairly common I am told) had to be flushed twice still no blood so had to have xrays to see if the tube was where it was supposed to be, it was so treatment proceeded. 5 hour day !!, now have to inject myself for 5 days to make sure my imune system stays strong, anyone else doing this, bit more nauseous  this time 

Love and hugs 

ML2022
Member

Re: March 2022 Chemotherapy starters

Yes, may we all have an extra great year next year!!!!!!

maggiemoo
Member

Re: March 2022 Chemotherapy starters

@jules_n @ML2022 @NickyC75 

Thanks for reassurance

 My allergy to plasters seems to be clearing up now finished the antibiotics and just on antihistamine  now, stitches came out on their own this morning  Instead of being on this journey I was supposed to be going to Outer Hebrides this morning  ah well next year!

ML2022
Member

Re: March 2022 Chemotherapy starters

@maggiemoomy doc warned that chemo could be delayed for low immunity. It hasn't happened to me but I can easily imagine how frustrating it would be to have to postpone. We're on this track and we want to get it done! @jules_n I've had 3 rounds of Docetaxel so far, last one is scheduled next week. I've had most of the same side effects everyone else has had on their various drugs. I get Docetaxel with cytoxan so I don't know which one causes which effects, but ask your doctor if you can eat ice during your treatment, it really has helped me a lot to lessen the stomach and mouth effects.

This is my good week before my next treatment! Enjoying the good feeling while it lasts. Sending hugs and energy to all.

 

jules_n
Member

Re: March 2022 Chemotherapy starters

Hi @maggiemoo , yes, it happened to me too, my 3rd cycle of EC had to be delayed by a week. The nurses had already advised not to mark all the dates on the calendar, because it’s a common problem, but it still upset the schedule I had in my head! I made the most of getting an extra few days where I didn’t feel too bad 😁 and my neutrophils recovered for the following week. Hopefully yours will do the same 🤞 . Tomorrow I have my first Docetaxel, who knows what delights are in store…..

NickyC75
Member

Re: March 2022 Chemotherapy starters

Hello @maggiemoo , I am sorry your chemo has been delayed. My oncologist and chemo nurse said at the start that this might happen and to not worry. I did miss my second weekly chemo as I had an infection.

Fingers crossed the time will help your bloods recover but I know it must be frustrating. 

I hope everyone is doing well and being kind to themselves. Xxx

maggiemoo
Member

Re: March 2022 Chemotherapy starters

My third round has been postponed because my immunity is too low, hoping it comes again for next week, eating lots of good food, has anyone else had this happen