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March 2022 Chemotherapy starters

269 REPLIES 269
NickyC75
Member

Re: March 2022 Chemotherapy starters

Thank you @ML2022  and @maggiemoo . We are having an amazing time and making lots of special memories. 

Thank you for the tips about the scar. I have religiously used Bio oil on it but just slapped it on every day. Looking and touching it makes me feel a bit queasy but I need to get over it! I will definitely be giving it a go.

I am also getting a lot of downy hair on my face. I feel I am growing a beard! I can’t remember what it was like before hair loss so maybe I am noticing it more. It is a side effect of Tamoxifen I think. With my very short unstyled hair, beard, black tie nail, extra weight, one boob… I am not feeling very glam on holiday 😂 my husband keeps saying that is just one short period in my life and it will pass so I am just trying not to think about it. 

I am thinking of you @maggiemoo  as you get your operation. I hope it all goes well and your recovery is quick.

 

Lots of love. X

ML2022
Member

Re: March 2022 Chemotherapy starters

@NickyC75have you tried scar massage? It really helps flatten and smooth scars faster than they would do it on their own. There's tons of stuff on Youtube about it, or your medical team might teach you how. I did my lumpectomy and port scars basically just rubbing them back and forth along the incision line, not across it, with olive oil (or any massage oil or slippery cream), with good pressure but not painful pressure, several times a day, especially the lumps and wrinkles.

Good luck going back to work in Oct! And I hope you're all having a fantastic vacation together.

ML2022
Member

Re: March 2022 Chemotherapy starters

@maggiemoo @NickyC75 @MLT21 @jules_n and all,

LOL, my hair is only a few mm long, too! And it's starting to curl so it sticks up all over. I can see thin patches that I hope will grow in but honestly I was starting to thin already anyway so maybe it won't. Color seems about the same as before, more gray than not, but I'm 65 this week so no surprise there. And yes, the unwanted hair has come back with the wanted! Too bad we don't get to choose which comes back and which doesn't.

Good luck, @maggiemoo with your surgery! Please keep us posted on your results. I also keep imagining I feel suspicious things. My first post-cancer mammo is in October and I know I'll be worried until I get the results back.

We are enjoying a light rain, the first after a long hot summer. Ease, comfort, and best wishes to all of you.

 

maggiemoo
Member

Re: March 2022 Chemotherapy starters

Hi all

Enjoy your holiday @NickyC75  you deserve it

I am booked in on Tuesday for my op.🤞 it will not be cancelled again.  I am a little nervous and not looking forward to that period of waiting for results,  I also keep imagining I can feel someting and then it's gone.   My hair is coming back I have almost 2 mm now 🤣😂, eye brows growing too and looking very unruly now, unfortunately getting unwanted facial hair too

The sun us shining here hope it us with you too, enjoy your Sunday x

 

NickyC75
Member

Re: March 2022 Chemotherapy starters

Hello All,

It is lovely to catch up with how everyone is doing.  @ML2022 and @MLT21 , it sounds as if you are getting stronger every day. @maggiemoo  Fingers crossed your surgery will be rearranged quickly and that is another major hurdle completed. 

@ML2022  My hair is definitely too short for my liking. I bought a good real hair wig and I have only worn it about 5 times. It was just too hot over the summer. I do hate my hair this short but I know it will grow and it is a small sacrifice to make.I did put a semi permanent dye on it as it came back with lots of grey. I have about 2 inches already. 

I had the meeting with the oncologist about the seroma (my scar from my mastectomy looks lumpy and awful, especially when I see how neat they can be). He said the seroma was only small and not worth draining. He called it a ‘dog’s ear’ - which is really attractive! The only other option would be further surgery, which I don’t want. Keeping it there will give me more skin in case I decide to have a reconstruction in the future. 

I did not realise how upsetting it would be going back to the breast clinic and waiting in ‘Waiting Room 2’. I surprised myself as I cried the whole way there. The tears were just flowing from my eyes, without me crying, if that makes sense. I was so nervous they might find something else. The surgeon was lovely and gave both sides a thorough examination, which put my mind at rest, especially as I had swollen lymph nodes under my arm whilst I was in Ireland and thought it was back! 

We are now on a family holiday between Herceptin injections. It has felt nice to fly away from everything and it made me realise how isolated I have been since my diagnosis (with not being at work and basically isolating through chemo). I took my son out of school and we have taken him to an elephant sanctuary and beach holiday in Thailand (I cleared it with the oncologist first). After the rubbish year we have had we just wanted to do something memorable and life affirming. The insurance was not too bad considering. 

My energy levels seem to be improving and I will look to start a phased return to work in October.  I am not sure if it is Herceptin or Tamoxifen but I have put on a lot of weight. I have upped my exercise but nothing seems to be shifting. Before the holiday I was doing Pilates 5 times a week and playing tennis 3 times. Thinking I will have to start jogging too.

I am looking forward to the Breast Cancer Now Moving Forward course, where hopefully I will meet lots of other ladies who understand and I can get some good advice.

Take care everyone. It would be lovely to keep in touch. Xxx 

ML2022
Member

Re: March 2022 Chemotherapy starters

Hi @maggiemoo, I just wanted to reply and say how glad I am that the chemo drugs are clearing out and you're beginning to feel better. I really hope you get your lymph node surgery soon. It'll be a relief to get that over and done with. Seems like so much of cancer treatment is waiting and that's really hard to do.

I'm feeling physically almost normal now so happy to report that there's light at the end of the tunnel! Hair's still too short for my taste but at least I know it's back. I'm learning to manage the anxiety over future cancers, but that will take more time for sure.

Best wishes to all of you!

maggiemoo
Member

Re: March 2022 Chemotherapy starters

Morning all 

Glad to hear you are all moving on, I am 6 weeks past chemo but still have not had lymph nodes out operation cancelled a second time this time because surgeon is I'll, my own us on holiday 

I seem to be negative at the moment, only to be expected I suppose until I know the nodes are ok 

I feel much better in myself though now the chemicals are clearing away 

Keep well everyone x

ML2022
Member

Re: March 2022 Chemotherapy starters

Thanks, @MLT21, I called my oncologist's office and they will get back to me. Good luck with the new drug! I'm not taking it but my cancer wasn't metastasized, at least not that could be detected. I've just started on anastrozole and so far, no problems with it. And congratulations on the port removal! I was so happy to get mine out. I was also sore when they first removed it. It's been 2 months now and it still itches underneath where the port box was, and the scar took some time to heal because not all the stitches dissolved like they were supposed to. Still, small potatoes! We can take this!

MLT21
Member

Re: March 2022 Chemotherapy starters

Hi everyone

Well, it’s a month since chemo finished and I’m beginning to feel relatively normal again.  @ML2022 I seem to be the opposite to you re brain fog - mine has definitely cleared.  Please talk to you health team and see what they advise.  Obviously we have all had different drugs, so it could still be a delayed SE.

 Saw the Oncologist yesterday and she has recommended that I take the ‘all singing, all dancing’ (her words) new drug Abemaciclib along side Letrozole once my RT has finished.  Are any of you lovely ladies taking this drug or about to? I’d be interested to know.  

My port was removed yesterday and I am sore today.  It served me well and I will miss it, sort of! 

I really hope you are all doing well, as well as can be expected.  I do keep up with postings on here but life takes over……….

Keep safe and well. 💪🏻🫂

 

ML2022
Member

Re: March 2022 Chemotherapy starters

@NickyC75that's so annoying that they left you out of the staff handbook! And rude, besides! I hope they straightened that out.

I have a question about chemo brain, wondering if anyone has experienced what I'm experiencing. I'm almost 4 months post-chemo and I've noticed MORE trouble, not less, with two specific things. One is driving. I can drive on the open road just fine, but in town with lots of things going on I'm finding it hard to see all the parts of a complex picture, like if there are pedestrians crossing at a 4-way stop and multiple cars waiting their turn to go, or at a construction site with flaggers, and judging the changing distance between me and another car if everyone is slowing down quickly. I haven't had any close calls, but I have to focus really hard in those situations. And the other thing is dyslexia/getting things backwards. I don't normally have dyslexia, but I get numbers and letters backwards now, and especially my clothes when I'm getting dressed, even when I think I've looked carefully at them before putting them on. Strange! Anyone else having these kinds of things? I didn't think to mention it to my oncologist when I had my follow up last week, and I wish I had.

NickyC75
Member

Re: March 2022 Chemotherapy starters

Well done @ML2022  I am really happy that you are at this milestone. Hopefully you are getting stronger each day. I know what you mean about looking back. I keep stopping and saying, ‘I can’t believe that all happened’; chemo also seems to have happened ages ago too. 

As for anxiety, I feel the same and am worried I will miss the signs if it does come back. I do this my counselling is helping. I think about it every song me day, even if it is just fleetingly. This last week I have felt more positive and have kept busy. Upping my exercise is definitely helping my mental health. I am playing tennis at least twice a week and have started doing beginners Pilates five times a week (I am just doing a class on YouTube with a girl called Nicole). I am looking forward to the Moving on Course at the end of Sept.

I think the thought of returning to work is difficult. Normally I am preparing to go back in Sept but am hoping to start a phased return in October. I am a bit upset as the staff handbook for the year is out and I have been deleted, despite me being a Head of Dept and Assistant Head! I am sure it is an oversight but it has really upset me.  I am going to bring it up with HR at my next meeting.

@ML2022 it has been a rough ride, to say the least. It is still frustrating that everyone thinks it is over and it is just time to move on, but I know it is because that they have never experienced it. 

Take care and keep holding yourself gently. Xxx

maggiemoo
Member

Re: March 2022 Chemotherapy starters

@ML2022 

So happy for you to get through the treatment onwards and upwards now   interesting about lavender I wonder if there is a list somewhere of other things that have oestrogen effects 

Still waiting for a new date for my OP, the antibiotics seem to be working now and cough is getting better, thankfully I did not pick covid up on top

Have a good weekend all x

ML2022
Member

Re: March 2022 Chemotherapy starters

Hello all,

I had my 3-month follow up after chemo yesterday-- 3 months! It feels like longer, honestly. Looking back on chemo, that time seems pretty foggy in my memory. It was a good check-up, blood tests were decent, radiated breast is not quite right but it's so much better than it was even a week ago, I could live with this even if it stayed the way it is now. I'll start on my hormone blocker this week. She was very helpful when I talked to her about my anxiety for more cancers in the future and said she'd send me links for resources for living with cancer. I will probably sign up for a support group, too. She told me that I shouldn't use lavender too much because lavender is an estrogen-imitator. I was surprised to hear it. I've been using it every day in my skin cream but I guess I'll have to switch. Have any of you heard that? Also, she wants me to work up to at least 30 minutes of exercise 5 times a week. I'm definitely not doing that now but I'm going to aim for it over the next few months. She said it doesn't have to be full-blown workouts at the gym; walking and stretching and yoga are fine, although she did suggest I wear light wrist or ankle weights on my walks, it's good for the bones. (I think holding on to the dog's leash might count! She pulls really hard.)

What a rough ride this year has been! It hasn't really sunk in that I made it through the active treatment. I hope my life gets smoother and more ordinary from here on out.

 

NickyC75
Member

Re: March 2022 Chemotherapy starters

I am sorry it is delayed @maggiemoo . Fingers crossed you do not have Covid. You never know, they might have a cancellation. I will bet you just want it over and done with.

I am sending all of the gang my best wishes and love. Xxx 

ML2022
Member

Re: March 2022 Chemotherapy starters

Oh, that's too bad, @maggiemoo, I'm sorry to hear that! It's so frustrating when treatment gets delayed. I hope you get over the virus infection quickly and that you don't get covid. I'll be thinking of you! Keep us posted, we all care.

maggiemoo
Member

Re: March 2022 Chemotherapy starters

Hi @ML2022 @unfortunately it has been cancelled as I picked up a virus which gave me a sore throat and cough(not Covid) my surgeon is now going on holiday for three weeks I am on antibiotics .also was in the same room on Friday with someone who had Covid there were 5 of us and another had proved positive since just hoping I don’t pick it up on top of what I have. As a rule I am hardly ever ill  but I guess my immunity is still low.  They are trying to fit me in to another surgeons list but think realistically I will have to wait 

best wishes everyone x

 

 

ML2022
Member

Re: March 2022 Chemotherapy starters

@maggiemooI hope your lymph node surgery went well today! Another waiting game for sure while they get results. Thinking positive thoughts for you.

I got my comfort cup in the mail and wore it today. It's a big help but it really needs a liner, otherwise you've got silicone directly against your skin and it doesn't breathe, and that's not good right now. So I'll have to cut out something from an old T shirt or flannel sheet or something else soft that I don't need anymore. My breast is healing really well now just as the doctor said it would. It doesn't hurt very much anymore and most of the dead skin is gone now, and most of the cracking is healed over. I should have ordered it ahead of time because now I don't need it so much, but I didn't know about it and I didn't think I'd have so much trouble.

Better times ahead! Peace and healing to us all.

 

jules_n
Member

Re: March 2022 Chemotherapy starters

Hi @maggiemoo , I was feeling exactly like you at 3 weeks post chemo, wondering if I would ever enjoy food or cooking again! And needing to sleep every afternoon. Just the same as @ML2022 , I suddenly felt much better at the 6 to 7 week point. It was fantastic when the brain fog, lethargy and nausea finally cleared. 

You’ve got more surgery to face now, I really hope that everything goes well and it will be a relief to get rid of those pesky lymph nodes. As you progress post op, I think you’ll notice that the chemo problems are all improving too. Sending very best wishes XX

ML2022
Member

Re: March 2022 Chemotherapy starters

@maggiemooI'm sorry you're still feeling such strong after-effects from chemo. It does get better! Another few weeks and you should see a big difference. I think I really felt the shift at 7 weeks, which goes by faster than it sounds like it will. It's too bad that your travel is so long, also @jules_n. I'm lucky because they opened a new cancer center this year less than an hour from where I live. Otherwise it would have been a long trip each way, every time.

Here's a new tip for radiation that my doctor gave me yesterday - he said to bathe my breast with a solution of half hydrogen peroxide and half water, twice a day, and let it air dry. It has helped a lot just since yesterday. He also said that I'm at the peak of post-radiation effects (at 11 days) so I should see a lot of improvement by next Monday. I can get through that!

And please don't worry, if you're listening to me and thinking radiation will be awful. It really isn't awful; we've all been through much worse with chemo. Sometimes I'm so tired of managing all the time. And tired of seeing these physical changes that don't look so good. I know you know what I mean. This is just one more thing, that's all. My breast will heal. My hair is coming back. Everything will be okay.

maggiemoo
Member

Re: March 2022 Chemotherapy starters

@ML2022 sorry you are suffering with the radiation, cant say I am looking forward to that, but good advice @Shi @Sunshinesonia 

@jules_n sorry to hear you have to stay away during yours. 

I am 3 weeks post chemo now and still feeling nauseous and fatigued, went to cheltengam to have my tunnel line out yesterday a three hour round trip. It was not pleasant as the line was stuck and took a lot of tugging and extra local anaesthetic. At least it's out. I am having lymph nodes out next Tuesday in Hereford which us only 3/4 of an hour away, I am told I will have to stay in overnight, any tips for getting over that gratefully received. And then the waiting game again for results. 

Glad we have some rain at last and the atmosphere is less oppressive 

Love and hugs

 

ML2022
Member

Re: March 2022 Chemotherapy starters

Thanks for the tips, @Shi  @Sunshinesonia everyone here always has such good advice! I like the idea of refrigerating the cream. I also found this silicone breast cup mentioned in an old post somewhere on here:

https://thecomfortcup.myshopify.com/

and I ordered one. Meantime, I cut a donut shape out of a soft foam kitchen sponge and put it in my bra, and that helps a lot, but I hope the cup will be even better. And it helps me a lot to know how long this could last, so I won't get impatient. This is not worse than chemo, but it's pretty unpleasant.

You all do so much to keep my spirits up! Hoping you all have a wonderful week.

 

Shi
Community Champion
Community Champion

Re: March 2022 Chemotherapy starters

Ml2022 ❤️ I used dr organics aloe Vera gel with tea tree after rads found it very cooling on skin and worked well for me so maybe one to think about after speaking to your team, took about 12 weeks for the burning feeling to stop for me post rads and I was slapping the cream on all the time post rads kept one in my handbag for when out and about and one in fridge at home. Hope your team can offer some cream to help sooth you too ❤️💕💕Shi xx

Sunshinesonia
Member

Re: March 2022 Chemotherapy starters

@ML2022 morning sorry to hear you have so much discomfort and this skin is cracked..

When I had radio I also had a sore breast, first it was red and now is a dark colour. I had to go back to wearing a soft sports bra that zipped up the front because the breast was so uncomfortable for a few weeks but then settled down. 

For the last 3 weeks I've started to feel some discomfort again round the breast and scar where they removed the nymph nod glands. I was sure it's all part of radio but did call the breast care nurse yesterday just to make sure. She said radio continues to work week/months after treatment and its normal to experience this discomfort.

I hope things start to settle down over the coming days xx

 

 

ML2022
Member

Re: March 2022 Chemotherapy starters

Hello all,

I'm 10 days after finishing radiation now, and my breast hurts a lot. Is anyone else who is past radiation having this? The skin in the area of the bursts turned really dark, and then really bright red, the skin cracked right at the edge of the nipple and the whole thing hurts. It looks like the nipple wants to invert, too. I think this is probably normal, but I called the radiation oncologist's office and I'm waiting to hear back from them. Meantime I looked online for some things to try and relieve it, and I saw multiple recommendations for aloe vera gel. I have a plant, so I switched from my calendula cream to fresh aloe vera gel right from the leaf. It dries out the seeping from the cracks and even relieves the pain some.  I also saw on Youtube how to massage the breast after radiation to promote fluid movement out of the breast so I'm trying that, and hoping it will also help the nipple stay where it's supposed to be. I hope it's okay to do this. Nobody said anything about breast massage when I got radiated. They did say that things would get worse before they got better (haven't we all heard this before!) This is a discouraging turn of events for me. I can't manage wearing a bra unless I have to, but the motion of ordinary movement hurts without one so I feel like I can't win either way. Pain relievers don't really help. I suppose this is just one more of those things we have to get through. ☹️

jules_n
Member

Re: March 2022 Chemotherapy starters

Hello to everyone in our March group, I’ve just been catching up with your posts from this week. Thank you @NickyC75 for being so honest and opening up about your feelings of insecurity and worry, at a time when everyone thinks we should be “getting over” cancer, and there’s so much pressure to be positive the whole time. Having had such a grim experience with chemo, I truly dread ever having to go back there. 
I’m 7 weeks post chemo now, and a month post Covid. This past week I’ve felt so much stronger and fitter, more like my old self than I’ve done for months, which has given me a boost mentally too. Like you @KimPa I’m fed up with hats and buffs so I’ve been going bald and brave, in selected situations anyway! I’m still a bit shiny on top but have a bit more at the sides, but still no eyebrows or lashes. 
I’m waiting for my radiotherapy planning appointment, then I should start a 3 week course. It’s not available at our local hospital, so I’ll be away from home for the 3 weeks. 
This thing about friends is weird isn’t it. Some of mine ask endless questions about my treatment, which makes me really uncomfortable, then make comments which leave me speechless! The latest one was when I said I’d be on hormone medication for 10years- she said she hoped I wouldn’t start growing hair in strange places and look like a man!! Tactless or what!!
Of course, some folk are just great and have been really supportive, even when I’ve been quite ill and antisocial. 
But no-one gets it quite like you ladies, more power to you all as we move forward! Jules XX

 

NickyC75
Member

Re: March 2022 Chemotherapy starters

Good luck @KimPa , @ML2022  and @maggiemoo  with your radiotherapy. I hope it all goes smoothly. Xx


@Sunshinesonia I am thinking of a phased return to work around October half term (not sure if I have already said). Do you work in an office?

 I am thinking I might ask for 3-4 days a week until my Herceptin injections are over.  Not sure how it will fit in as this week I have five appointments (bloods, Herceptin, psychiatrist, counsellor, breast surgeon about seroma) and  and need to rearrange my heart scan. I know it is unusual and they all just happen to have fallen in one week but not sure how I could do that if back at work. I agree though, maybe I won’t have time to worry when back at work. 

Also, do I wear my wig for school or go with the very short hair?? Not sure I could cope with an unkind comment from a pupil.

 

Before I go back to work we have booked a family holiday, and I am taking my son out of school. After the rubbish 9 months we wanted to do something special. The consultant said it was fine to go. To be honest, I feel a bit nervous about the travelling and energy levels but am going to throw myself into it. We can’t normally ever go out of peak times. 

Like you @Sunshinesonia  my eye brows grow back really quickly. My lashes are a bit stubby. My hair is growing really quick but am devastated about how grey it is. It is early days and definitely getting darker in colour. I can’t wait to pop a dye on. 


You hit the nail on the head about people getting in touch. They can’t win though, as when people want to see me I avoid them but then get mad if they don’t try! I am not sure what I want. 

I am back from Ireland now, after two weeks away. It hits me again when I get home and back to appointments everything that has happened and is still happening! 

I hope you have lots of pampering and look after yourself ladies. Sending lots of love xxx

Pengu1n
Member

Re: March 2022 Chemotherapy starters

Hi KimPa

Hope everything goes ok for your rt today. 
I too had to do the breathing thing. I had rt after chemo and found rt very much easier. 
The breathing in and holding breath isn’t for long and I was given very clear instruction and encouragement. It really is a matter of breathing in as much as you can and holding your breath until told. They give you a few practice runs. It really is nothing to worry about. 
best wishes to you and everyone having this treatment. 

KimPa
Member

Re: March 2022 Chemotherapy starters

Yesterday I blew caution to the wind when going into the office and didn’t wear my Beanie hat! I never got in with wigs (itchy and hot and a weird shape so hair hangs over my face). Hair is there like peach fuzz but a little longer. It was very liberating!! If people have a problem it’s their problem not mine but actually the response was amazing! 

I start radiotherapy today and was a little thrown when the consultant called and despite the breast cancer being in right side, they have had to slightly change the plan for the boost sessions as due to position and angle the beam will come at they can’t avoid my heart so now have to do the deep breath things (my technical term) to move heart out of way. Has anyone had to do that and if so any tips?

Sunshinesonia
Member

Re: March 2022 Chemotherapy starters

Good luck @KimPa , @maggiemoo  and @ML2022  with the radiotherapy. Hope your not feeling to sore from it. 

@NickyC75 your definitely not alone. Have been feeling the same about the cancer returning and like you every pain I'm convinced it's back.  The weekend I had shooting pains in my head, automatically thought its brain cancer!! I don't think the fear will ever go away. 

When I'm busy doing things I don't think about it as much its the days I'm sat on my own doing nothing that makes it worse. 

I've made the decision to do a phased return to work w/c 5 September. I need to do this for me and try and get back to some kind of normality. For me returning to working is never going to be a right time so I just need to bite the bullet and do it! 

Now my hair is growing, lashes and brows are coming back I feel more confident to face people again. 

What I still find hard and very frustrating is people thinking we are all better now treatment has finished and they don't tend to contact and ask how I am. I get so angry 😡, at the beginning you receive all these lovely txt messages, cards and flowers then absolutely nothing. 

One thing for sure when I return to work, I will be putting myself first not stressing and doing extra hours. I need to take care of me because at the end of the day your just a number.

Take care all you beautiful ladies....sending lots of love and positive vibes xx

 

 

NickyC75
Member

Re: March 2022 Chemotherapy starters

Thank you so much @ML2022  for being so honest. Your response literally made my cry with relief that other people feel this too. I felt like I was so positive through chemo and got on with it now the anxiety just hits me. My counsellor asked if I had posted about my feelings on this forum but I said I did not want to be negative or cause other people to worry. She said what was the point of it if I was not honest and could not be truthful.  I suppose that is what prompted me to post. 

The fear of it returning is there constantly, especially when I feel a pain or ache, and I feel under pressure that I need to live my life fully and quickly before it returns, which is putting me under more pressure, especially as physically  and mentally I am not in a place to attempt to do much at the moment. I feel I am being fake with people saying how well I am - I don’t know why I need to put on an act but do people really want to hear you feel rubbish?  I am also hyper sensitive to what anyone says. 

I am trying to do everything to feel better e.g sport, reading self help books, going on holiday, signing up for courses, but all I really want is someone to tell me it won’t come back, which I know is impossible.  Like you @ML2022 , I know lots of people who are 10yrs or 5 yrs clear but I feel just really unlucky! The people I know who have had it said that the anxiety and fear never fully goes away but it does fade. One lady said it makes her appreciate life so much more.

It still feels as though we have a long way to go and I suppose it is still so raw. 

Sending all you ladies my love, strength and positive thoughts. Xxxx

ML2022
Member

Re: March 2022 Chemotherapy starters

Thank you @NickyC75 @maggiemoo for posting about this. I'm also going through higher anxiety now than I had during chemo. It sneaked up on me as radiation was finishing up. I was so occupied during chemo managing the side effects and keeping my outlook positive and realistic trying to understand what I know and what I can't know, etc -- and now that's all done. Another breast cancer would be picked up in a mammogram, but the breast cancer reappearing in my bones, brain, blood, etc-- places we don't scan routinely-- that's what I'm anxious about. Also the prospect of maybe having to live the rest of my life treating one cancer after another. I'm talking with my counselor about it, too. And I'm starting our local cancer survivorship program later this month. I know so many people who have had cancer 10, 15, 25 years ago and not had a recurrence-- but I know others who have, and so yes, I'm anxious. I feel like I know intellectually what it takes to live with this fear, but inside? No. I'm scared, too.

I signed up for a creative writing class starting in September. That's something I've always wanted to do, take a writing class-- I haven't been in a writing class since I was 18 years old, and I love to write. So like your art, @maggiemoo, I hope that will give me some outlet and some distraction from my fear of more cancer.

@NickyC75, I hope going back to work will be a positive, helpful step for you. We all need to be as compassionate toward ourselves as we would be toward someone else that we love, as we move ahead. This is not easy!

Continued love and strength to us all.

NickyC75
Member

Re: March 2022 Chemotherapy starters

Thank you so much @maggiemoo . I feel I am on the verge of tears all the time and am so tired. I suppose I thought I would ‘bounce back’ a lot quicker. I have been scouring the forum looking for people who feel the same and went to post a few times but don’t want to be the miserable bag! 

It is such a good outlet doing your art. I bought all gear to give art a go but I don’t really know where to start. I love playing tennis but had to have a break as I went back too fast and hard and ended up with painful tennis elbow in mastectomy side. Then was paranoid it was something more sinister! Think I have to expect my arm is going to be weaker from the mastectomy. 

You have being so brave @maggiemoo  coping with everything you have faced. Thank you sincerely for your kind words. I just needed to hear that it was not just me.I feel a weight lifted just having a reply.  Xxx

maggiemoo
Member

Re: March 2022 Chemotherapy starters

@NickyC75 

Dont beat yourself up we are probably all feeling the same way, I have been more tearful since having my last chemo 2 weeks ago and the fatigue is loads worse than ever before. I cried yesterday because I was struggling to speak to someone about my tunnel line, it could not be cleaned on Monday because of a blockage and the nurse told me to ring the oncology team, I am due to have it out next Tuesday eventually someone rang back and said not to worry it would be ok till then. But you do worry! 

Being back in a waiting game, for my axillary clear out and then for the results of tests on those, it is sapping my already low energy. I try to put a brave face on it and keep throwing myself into my art, I have overdone it and got into 2 exhibition in August   plus we are open at home this year in September for Herefordshire Art Week. 

By then I should know where I stand re RT. 

Off loading is good and this is a safe place to do it, at least that is what I think

Lots of love and hugs  x

NickyC75
Member

Re: March 2022 Chemotherapy starters

Good luck @KimPa , @maggiemoo  and @ML2022  with the radiotherapy. I hope it is going as well as can be expected.  Fingers crossed you get the dentist sorted. 

I just wondered if anyone else is suffering with anxiety/worry? I don’t even know if I should post this on our March site and I don’t want to sound negative when everyone seems so much more positive and braver than I am.

I am in Ireland at the moment visiting my sister between appointments, and maybe it is because I am away from home (safe place) and then the news about the amazing Olivia Newton John. Samantha Janus has just posted that she has breast cancer. There are days and times when I am ok but then it comes in waves. I start trying to find people with my exact diagnosis on Google, Twitter and Insta, which I know it not helpful. Yesterday under my arm felt sore (opposite side to mastectomy) and I was sure it had returned in the opposite side, I was in a stage of complete panic. Three weeks ago I had a chest X-ray when I was ill with Covid I burst into tears as I was sure they would find something else. The feeling of absolute terror of hearing a result was horrendous. It is like I lock it away and control the fear/worry and then it bursts out. 

I am looking at doing a phased return to work around October half term but I don’t know how I am going to cope - it will either make or break me. I might be so busy that I don’t have time to think or I might not be able to cope. We have a lovely family holiday planned before I start back to work too. I have so much to be positive about but am struggling. I am still seeing my counsellor but feel I am living with fear all the time. 

I have an appointment with my surgeon next Tues about my seroma. I feel like begging for a full body scan. Feel nervous even going back to the breast unit. I felt more in control and secure having the chemo every week, even though I know it is awful. 


I have a great family and friends around me but I feel they do not understand and have no clue how I am feeling. They see me as really positive and upbeat when inside I am not. There are times I am. 

I suppose I wanted to know if anyone else felt similar? I have read that article about life after treatment a few times and it does help me. I have also signed up for the Moving On course with Breast Cancer Now at the end of Sept. 

Sorry for off loading so much. Xxx

maggiemoo
Member

Re: March 2022 Chemotherapy starters

Hi 

@KimPa I am on bisphos...... I cant spell it either,  2nd dose end of  September, no one has mentioned dentist though, mine has actually left the practice , but hoping they gave recruited someone now, as I need a check up after all the chemo.

@ML2022 I find this round the fatigue hits you from nowhere too and my legs are like dead weights  and I really need to get walking and fitter before my nodes come out 

Enjoy the sunshine x

ML2022
Member

Re: March 2022 Chemotherapy starters

@KimPaGood luck with radiation! Be sure and use a really good cream every day during radiation and for a couple of weeks after it's finished. I've been using calendula ointment- very greasy but really effective-- but honestly I think any really good skin cream would work. Just don't put any on 4 hours before treatment. If it's oil-based like mine it'll stain your bras so wear ones you don't care about (or get new ones after-- yeah!). I put it on at least 3 times a day all over my breast, underarm, and side, and my skin's doing great. I've found radiation pretty tolerable although the bursts do hurt a little for about half a day afterwards and I've had some intermittent pain in my upper back, side, and arm on the radiation side. The doctor says it's normal. And you'll probably get tired towards the end. Eat well, sleep long, and do some fun things. I know you'll do great!

KimPa
Member

Re: March 2022 Chemotherapy starters

Hi

I start radiotherapy this week and will have 10 sessions over 2 weeks so all done and dusted by bank holiday weekend!! 5 to whole breast and 5 boosts to tumour bed. 

Then onto hormone tablets. But before that I need to get some dental work out of the way as the bisphosphonate (sorry for spelling) apparently can affect jaw so my oncologist wants dental work done (found out a tooth is fractured so have to have it removed - deep joy)!

Have also had to contend over the last few weeks with swollen legs - they don’t think it’s due to chemo but am now on water tablets which seem to be doing the trick. 

But the end is in sight (apart from taking hormone tablets for god knows how many years)!

Hope everyone is ok?

 

ML2022
Member

Re: 'mRe: March 2022 Chemotherapy starters

@maggiemooThat's great that they're thinking you won't need rt! I understand about the fatigue, it wallops you all of a sudden and it doesn't just feel like "tired", at least for me it's much more than that.

FYI, after I posted last time I got hammered with fatigue, no warning, just BAM. Legs hurt, arms hurt, hands hurt, everything hurts. It's how I felt after chemo stopped but actually even worse. Ibuprofen, Tylenol, and CBD diminish it somewhat but don't make it go away. I wonder if this is what fibromyalgia feels like and if it is, no wonder it's such a debilitating disease. Anyway, I know by now that I just need to take good care of myself and wait it out and I'll get through it.

Love, hope, and good wishes to all!

maggiemoo
Member

Re: 'mRe: March 2022 Chemotherapy starters

Hi @NickyC75 @ML2022 

 Glad you have finished radiotherapy and can knock the heavy stuff on the head

I have had much more fatigue after the last chemo 2 weeks and feeling more sick, but guess it's just thaccumulation of the drugs, having my tunnel line out on 16th and lymph nodes out on 23rd, but they are now not considering radiotherapy until the results of that are in, originally they told me three weeks of rt.

I agree the support of this group has been wonderful, hope everyone else is ok ❤

NickyC75
Member

Re: 'mRe: March 2022 Chemotherapy starters

Congratulations @ML2022 !! Great news xxx 👏🏼 🎉  You have made it and hopefully you will get stronger and stronger each day. I hope you are cracking open the bubbly today. X

I have been on Tamoxifen for 6 weeks now and so far, touch wood, I do not seem to have any side effects. I have read a lot about people struggling with the effects. I am not sure if I am in the menopause or not but my periods have not returned (I am 46) so far, but my oncologist said I could still be ovulating. During chemo I was getting hot flushes but they gradually stopped. 

I have also signed up for the Breast Cancer Now ‘Moving On’ course. I decided to go for the in-person course as I felt it would be good to meet others who have gone through it. 

As I am a teacher, I am looking at going back to work on a phased return in October. I am not sure how I feel about it. Physically I look so different and I know my confidence has taken a battering.

I agree with you, the support I have received on here from all the lovely ladies has really helped me get through the last horrific 8 months. I can’t thank everyone enough and I sincerely hope that everyone is doing well and coping with the ‘new normal’. 

Congratulations and sending you lots of love and support.

Nicky xxx

 

ML2022
Member

Re: 'mRe: March 2022 Chemotherapy starters

Hello ladies! I'm celebrating because today I had my last radiation session! 24 whole-breast zaps and 8 bursts. I'm done! I'm a little bit the worse for wear but I made it!

I got really tired starting last week when they started the bursts and it's getting more so, just like the doctor said it would. He said that and the skin redness would get worse for a bit before it gets better. Not nearly as bad as the tiredness from chemo, though. I'm so glad to be finished with the heavy-duty treatments!!!

Next step is to start on the hormone blockers. I suppose I'll start sometime in the next month. Has anyone else started on theirs yet? Wondering if it will give me a second menopause.

The camaraderie and support from this forum have been tremendously helpful to me. I'm so glad I found you all! Best of luck to all of you in the rest of your treatment. Wishing you all health and happiness going forward!

Sunshinesonia
Member

Re: 'mRe: March 2022 Chemotherapy starters

@NickyC75 sorry to hear you've got chronic seroma. Hope it can be sorted quickly.

Yeah its to stop your brows from smudging 🤭

NickyC75
Member

Re: 'mRe: March 2022 Chemotherapy starters

Hello all,

Great news @MLT21 that you only have 4 left to go. Hopefully the next few will go really fast and you will have minimum side effects. Xxx

@jules_n amazing results. I am so happy for you. I know we all have to be cautious but it is good to have that positive news. 

@maggiemoo , I hope you are doing well and still managing to do some artwork. 

I can’t find the message about the Lipcote. @Sunshinesonia , do you use it to make your brows stay on all day? I used to use it when I was at school to keep lipstick on! It is a real blast from the past. 

Has anyone else had problems with their mastectomy scar? It is flat until I get to the armpit. I sent pictures to my nurse and she thinks I have a chronic Seroma (pocket of blood that has not cleared) - I had it drained a few times after surgery. It it quite uncomfortable with my bra and as it is so numb I tend not to feel the discomfort until it bruises. I am having to wear the softest bras (with no real support).  My nurse has booked an appointment with my consultant to see what he can do. 

It really makes me feel emotional when I think of all of these women going through this experience - people of every age and background. The support we all receive from people we have never met. 

I hope everyone is ok and doing well. Xxx

maggiemoo
Member

Re: March 2022 Chemotherapy starters

Hi @MLT21 @Sunshinesonia 

 

  Nice to hear from you both again, I was due to have 3 weeks RT but now the breast surgeon wants to see the results of the lymph node removal first he  seemed to intimate RT might not be needed

I find polybalm good too

Good luck all

Sunshinesonia
Member

Re: March 2022 Chemotherapy starters

@MLT21 I had 5 days of RT in June, each session was about 5 to 10mins. Longest part is getting lined up for each session. 

I was very tired the week of having it but think some of it was the early appointments. 

X

MLT21
Member

March 2022 Chemotherapy starters

Hi everyone

I haven’t posted for a while but have dropped in to catch up on progress regularly.  It is good to see that we are all coping reasonably well considering…..

I have just 4 x Paclitaxel to go, so end of chemo is in sight 😅.  I have had relatively few SE’s over the course of treatment and feel very lucky.  I can’t sing Polybalm’s praises enough.  All nails bar the one toe nail have remained strong and healthy.  My hair (white peach fuzz) started to grow back two months ago but I fear I may be shedding again since being on the PAC, which is to be expected apparently 😳.  I went on the Hair Loss, Scalp Care & New Growth Virtual Workshop at Look Good, Feel Better (book online) and the lady running it is very knowledgable and scientifically trained/qualified regarding hair / hair loss / regrowth.  She busts some myths and recommends many (cheaper) products to use.  Seriously, don’t waste your money on lots of products making claims to help regrowth, thickening etc.  She explains why very well and answers all your questions.  

@KimPa welcome to the group. We seem to be on similar treatment pathway timings.  I have appointment booked to see the Radiologist in a couple of weeks.  I’m interested to see if they are going to recommend the 3 weeks (15 days) RT or the 5 day RT.  I have been doing my research and the resulting outcomes are the same.  It has now been approved by the NHS as the recommended approach.  I’m looking forward to the discussion with my Radiologist.  Has anyone in this group had or is having 1 week of RT?  It would be good to hear your experiences. 

This week I went to see a Lymphodema Specialist Nurse as I had some numbness in my arm, back and ribs. I thought it was a SE of the Chemo but the Onc said not and referred me.  The nurse was very good.  I came away with exercises and self massage techniques to help the drainage and they work! Yay.  I just have slight numbness in my armpit now, which is where I had full ANC.  I felt a bit of a fraud as the difference in size comparing both arms was 1cm, but she said it was good to start the process earlier than later so the numbness doesn’t worsen and cause other issues (Cellulitis).  Phew.

Anyway, I’ve prattled on enough.  It’s been good to catch up with you lovelies. 

We are beating this 💪🏻.  Keep strong. 

🫂

 

NickyC75
Member

Re: 'mRe: March 2022 Chemotherapy starters

Hi @maggiemoo ,

I have started taking Biotin. I think someone had said their consultant recommended it. I ordered the nutrition geeks Biotin Growth off Amazon. I also went to Lush and bought a Caffeine shampoo for growth and apparently their orange shampoo bar is supposed to good too. I bought their scalp mask too. I am not sure they are making much difference but my hair is growing really fast. 

I did not know if to bother with the stuff to make brows and lashes grow, as I thought that if they work surely bald people would use it. 🤷‍♀️ 

I am so happy for you about your bloods. Last chemo! Hurray! Well done - you have really been on such a rollercoaster and I bet you thought it would never end. You have been amazing. I hope you have a little, gentle celebration. X

Lots of positive vibes and good wishes. You have got this! 💪🏼 xxxx

maggiemoo
Member

Re: 'mRe: March 2022 Chemotherapy starters

Hu @ML2022 @jules_n @NickyC75 @KimPa 

I love to hear from and know how your doing, @NickyC75 dont ever think you are a moaner you are not and have been so helpful, can any if you remember the name of the serum that helps hair regrow, I have been putting almond oil on my scalp to hydrate it, but heard recently that oil is not good to use 

Just had chat with oncology to say bloods are all good ready for last chemo on Monday trying to stop myself crying with relief right now. 

Seeing all my kids and grandkids over the weekend so that will cheer me up

Love to all x

jules_n
Member

Re: 'mRe: March 2022 Chemotherapy starters

Welcome to our little group @KimPa, it’s always good to hear how everyone is getting on. 
I’ve had a CT scan, and lymph node ultrasound since my final chemo. Very happy that the results show “Complete resolution of nodes, and no evidence of disease elsewhere”. Finally some good news! I’m not exactly breaking out the Prosecco, but allowing myself to feel a bit of cautious optimism about the future, which I hadn’t dared to do until now.  
I’m also starting 10 years of Letrozole, and will be having a course of Radiotherapy to the axilla and chest wall in a few weeks, but I haven’t heard the details yet. I’m definitely going to try your Calendula salve @ML2022 

So no further surgery for me, but I’ll be thinking about you next month @maggiemoo. By the way, I’m also a fan of Tropic skincare, lovely natural products. 
@NickyC75 like you, pacing myself isn’t something I’ve ever had to do! But post chemo and Covid, I still have very little energy or stamina. There were a few uphill sections on my walk yesterday and I had to slow down to snails pace! 🐌  I wonder if I’ll ever be able to go hillwalking again? It’s going to be a long road back I think. 
I still have the Grandad grey fluff, I won’t be going out without a hat yet! No eyelashes or eyebrows either, so I’m getting better with the makeup. I hadn’t heard about Lip Cote @sunshinesonia, but when I looked it up, they now do Brow Cote too. 
Keep posting updates & tips ladies, it’s so helpful. Love & very best wishes to all of you, Jules XX

 

KimPa
Member

Re: 'mRe: March 2022 Chemotherapy starters

Thanks everyone for your kind words

@NickyC75 is it too late to use the polybalm? Some nails are already lifting off?