@gardengirl200 Yes, the letrozole has slowed down my hair growth - I am at the sticking up in all the wrong places 😀 bit like a cockatoo. I am also finding the heat hard to cope with makes my legs feel like jelly, a constant hot flush so I go inside and keep cool. I am fine once the temp has lowered I put this down to the hormone tabs as I was not like it before.
As for going through it all alone - there really was no option, plus I have lived alone for 14 years so I was used to it - it also worked for me I would come home from chemo, or whatever retire to bed and sleep I truly do not think I could have coped with someone fussing over me (we are all different) I even emptied and changed my own drainage bags, the district nurse kept in touch and told me she was there if I needed her - but I did it, I think I needed to feel I was able to cope. I had friends who rang, emailed, sent goodies (I had a little get-together once we could all meet) it was lovely to chat and laugh again I try SO hard not to look back.
We are all stronger than we think we are sometimes relying on others takes that side of us away, I know it did with me when I lived with my then partner.
With you on the trivial aspect side - it does make you see/feel things differently. It has made me realise that it does not matter if I do not fit in or I did not do this or that - we are what is important and pleasing one and all does not matter.
I got body shamed a few months ago (which upset me hugely) I posted on here It was one of the lowest points of my journey to date could not get their words out of my head. A friend made me look at what I had come through and asked me was 'that person 'worth all the suffering/heart-ache' the answer was NO (some people are just sh*ts)😁.
I wish you well you sound like a strong lady so you can and will get there we all reach our destination at different points in our life.
Lots of love
Hi @gardengirl200 thanks for your reply, much appreciated. I didn’t know that you had to have an expander put in at the time of the mastectomy or else an implant isn’t possible. I’m not sure what type of recon to go for or whether I’ll have one. Slough I’ve heard the results from the DIEP recons are supposed to be great.
Im so pleased you have been reassured regarding your CT results we have enough to worry about without additional ‘what if’s’.
I have been seeing a counsellor throughout this process, initially because it’s my second time. and then because of my mum becoming ill and passing. I’ve found it very helpful.
When do you start rads? The finish line is in sight I bet you can’t wait. I hope the radiotherapy is easy on you xx
I start on tamoxifen next week - is that the same hormone drug as you? I didnt realise these hormone blockers might slow the hair regrowth. 😕
I also agree about others' comments about you going through this on your own. Total respect. I am single but at least I have two teeangers in the house. It is company, at least on the rare occasions they are off their phones/the xbox. My son goes back to Uni next week. My daughter will be off to Uni next year. I dread that. Having said all that, I am starting to learn to enjoy my own company, hobbies etc and there are perhaps some upsides to not having a husband in the house, especially a grumpy one!
But yes, we will never be the same again after this. One positive, I feel more confidant. A bit of a warrior ( as well as a worrier!) I hear my friends/my mother complaining about such trivial stuff . I just have to remember I was perhaps once like that!
@Michelle21 Good luck for tomorrow. I had a mastectomy and some lymph nodes removed in April. I had the option to stay in hospital overnight and I took it in case there were any early complications (which there weren't). I did not find it too sore - the whole area goes numb and I managed with paracetomol etc. I did not get option to have a drain fitted and had to go in to hospital to have fluid drained a couple of times over the next fortnight which was completely painless as whole area was numb. Important that you do the exercises, which start immediately post surgery I recall and build up. Despite doing that I got 'cording' but after about three months it went away on its own. Front fastening post surgery bra useful.
Due to Covid I wasnt given option of reconstruction at the time so I now just have the classic smiley face scar. I do plan to have reconstruction though but I have been told to leave it at least a year to settle. No expander was put in - again due to Covid - so I cant have an implant - the only reconstruction I can have is for extra fat to be moved from another part of my body - probably my stomach! If I was still married I might not bother with reconstruction, but I am single and feel I should make the effort as I do hope to try to meet someone once the hideousness of this BC is behind me. In this day and age it probably means online dating but afer chemo, that holds no fear!
I took your advice and spoke to breast care nurse re my ongoing worries over enlarged lymph nodes etc. She spoke to consultant and I am reassured. They assure me that a second CT scan which was taken to plan the rdiotherapy shows everything completely normal. I am very relieved.
She also said that if I was struggling with coping once the treatment is over ( i have 3 weeks of radio and then I am finished) the NHS have counsellors she could refer me to. It is good to know because, as we all appreciate, going forward with this will be tough.
Good luck xx
@Love running Where you live sounds like the perfect area for a parkrun, it sounds beautiful and very Swedish. Running again is great and I am also looking forward to the crowds cheering me on. I like your list of runs to do abroad I have looked at some of those too over the years but not entered yet apart from London Marathon which is obviously not abroad for me! It was a great atmosphere, I’m glad I’ve done it but a marathon is a long way! 😂 I recommend you add the Cardiff Half Marathon to your list. It is a great route around Cardiff with 25,000 runners. The second biggest Half in the UK after the Great North Run. I have to confess to being biased though as I’ve been running it for years as I live in Cardiff! The frozen lake sounds fun and scary at the same time, I will look it up.
My husband has done something similar to your winter bathing when he was in Canada years ago. I think he called it a Polar bear dip! Exhilarating I’m sure!
Thanks for sharing your surgery experience, I am not sure what I will wear when training as like you I don’t want chafing from friction but I will be completely flat so no need for a bra, maybe a stretchy sport vest/bra that won’t move. I think it will be trial and error.
I hope you are feeling well and have some of the lovely sunshine that we have here today. X
@Sammy73 Thanks so much for sharing your experience. I don’t think I am going to have implants or recon for at least 3 years. I feel like I need a break from all of this. I’d be interested to hear how your implant is in the future though as it’s something I will consider depending how I feel after 3 years flat.
Re your numb arm mine is still numb 3 years later, it’s better than it was but it will never be the same.
I will be taking all the pain killers they offer for sure! 😂
Totally agree with the 'Soft non wired bras are best I wont ever wear an underwire again!!!'
Good evening @Michelle21
Well done for resuming your running. As I told to Amy, no matter the distance and the time, it is the steps and the sweat that counts. The greatest thing with running is that the progress are really fast (you loose quite fast to😅). Before you think about it, you will be back in shape and running half marathon again. I have booked few 10 km races end of September and in October. I don't know if I can run the full distance but even if I walk some part of it, I will be happy to take part and to be feel the cheering from strangers. It is such a great atmosphere.
There are park runs in Stockholm but unfortunately not close to where I live. I live by the forest and many lakes so, I have plenty of space to trail run. Two summer ago, I would run and then finish with a swim in the lakes. I have been thinking about trying swim run but I am not a strong swimmer, so i need to practise first the swimming.
It would be great to be a the same start line sometimes in the future. I intend to run one or two abroad next year. Svalbard, Paris, Lisbon, Copenhagen, London, Budapest and Prague are on my bucket list.
I have only run once abroad (meaning outside Sweden) and it was the frozen lake marathon in Norway (https://frozenlakemarathon.com/). You literally run on a track made on a frozen lake, you need to have shoes with spikes (which I have since I run all year around and it would be impossible without spikes from January to March/April). I did the first edition, it was sunny and not too cold. Just magical! I loved it.
I did not get a mastectomy. I underwent two lumpectomies two weeks apart. Two nodes were taken with my first surgery through the same incision, so no incision under the arm. This was good as it was less painful. The second surgery was done because the margins were not clear. I did run both times approximately 10 days after surgery. I was wearing a double bra and I still do when training to avoid shocks and friction to the scare. I realise that this was only possible because the surgeries were not too extensive and without full node clearance.
Speaking of frozen lake, I tried this winter for the first time (the day before my first surgery) winter bathing. Basically it is bathing in a hole made in the ice in a water that is approximately 4-5 degrees. I was so scared to do it but it was fun. I just dipped myself for 30 sec (may be a minute) and came out. I will do it again this winter when I am off the PICC line... Lots of plan post chemo.
I wish you to be able to run as much as possible before the surgery and to get lot of endorphins to help through the next phase. Good luck on Wednesday
@Michelle21 hi there, I had a left nipple sparing mastectomy and lymph clearance and implant done on 13th April, its day surgery, but dont let that fool you, im still numb in my left arm and implant is just settling down now, ready for radiotherapy!! Joy!!
I had 2 drains just under my boob and home visits daily for 10 days for draining.
My surgeon wanted to see me weekly afterwards up to 5 weeks as apparently if something goes wrong it can go very wrong quickly. Luckily I've had no issues just pain and unfortunately really uncomfortable for a long time. They give you codine and advise minimal use, I spoke to my pharmacy and they told me to up it and have red wine!! Which I embraced!! Obvs!!
I also got paracetamol and ibuprofen through my doctor as he can give you shit loads at a time!! Helpful!!
It was my arm that was dead for what felt like months, slowly getting the sensation back everyday little by little. I could not drive for about 6 weeks, I tried but it caused alot of pain. Try doing your exercises, they give you in the shower I found this helped until I had the picc line put in.
I walked as much as I could, but really take it easy too, listen to your body, it's a major op even though it's day surgery.
Soft non wired bras are best I wont ever wear an underwire again!!!
Good luck for your meeting on Wednesday. I was pleased my surgeon was a lady I felt she cared what I was going to look like.
Shout if you have anymore questions xx
Hi @Love running you are very inspiring with your running posts. I always had every intention of getting back to running as soon as I finished chemo but love reading how you have kept it going throughout. I am pleased to say I have now been out twice, the first was really tough like running through quicksand! But today I went again and feel I have a starting point. I am aiming to do parkrun on Saturday, although May not run the whole 5k. I think I have read you have parkrun in Sweden? I love it. I also love the sound of the Norwegian half you mentioned, I may see you on the start line! I’ve never done a half abroad before although have thought about the June 21st night run in Norway.
Although I have only ran twice I feel like I have claimed part of ‘me’ back again and it feels so good. Also I am focussing on getting as fit as possible before I have surgery. Did you have a mastectomy? If so how was it?
Has anyone else here had a mastectomy with lymph node clearance? Any advice much appreciated. I meet the surgeon on Wednesday, I will be asking for a bilateral mastectomy and I’m assuming I will be having a node clearance on my left side. I have already had the the lymph’s removed on the right side 3 years ago.
@amy46 well done for keeping your running up. I walked almost every day through chemo anything between 3-7 miles and found it helped me physically with SE’s and mentally. I was on the same regime as you, carboplatin & paclitaxel, are you doing 9 or 12 weeks? Unfortunately both cause neuropathy so we get a double whammie on the carboplatin weeks. However I found neuropathy didn’t really start until approx week 8 and was worse on the carboplatin weeks but did ease off slightly through the 3 week cycle. The final 3 weeks were the worse and my fingers have been affected too. I actually found that if I didn’t walk my feet were worse so I think walking and running helps. I hope you are able to continue running but if not walking is still good, you just have to do what you can when you can.
Ive just seen the very sad news that Sarah Harding had died. It’s a horrible reminder of what we are all facing. I have to remind myself that there are many more women who survive Breast Cancer.
@Guest user You must be an incredibly strong person to have gone through all of this on your own, my hat goes off to you.
@TicTok & @Sammy73 i hope your most recent Docetaxol is easier on you.
I hope everyone is able to enjoy the weekend sunshine xx
This is great. Well done! The distance does not matter, it is the fact to go out and run. It also seems that you were happy to run. This is the most important benefit of it all.
I am glad that my experience can help others to go out there and move. It has been such a great help and source of happiness for me. Today I went out and run too. I could not run more than 5 km and they were really hard. But what was done does not need to be - is my motto today. Today the sun was shinning and the air was fresh and just this was worth going out.
Regarding neuropathy it has started 'lightly' after paclitaxel 5. It was mostly sharp needles feeling at night which woke me up. I also got very cold hands both from paclitaxel and its consequence on my blood pressure, which dropped quite a bit. So my hands get really cold when it is cold outside and then it hurts. So I am going around with gloves in my pockets at all time.
But since paclitaxel 8, I have more on and off tingling in my feet and hands even during the day but also in my lips strangely enough (like I am drinking fizzy water all the time and the bubbles burst on my lips). I met my oncologist on Thursday and she said that she will reduce the dose from paclitaxel 9 (tomorrow). She really wants me to get all 12 paclitaxel but wants to prevent the permanent neuropathy (she is supportive of my training and running, so she knows that this is so important for my future life quality).
I will let you know if it made difference.
Keep running, keep strong and keep fighting.
Have a nice day
Just wanted to let you know I did two short runs last week - only 2.5km but still out there and this morning I did 4km! I am not a long distance runner like you, I usually do 5km but I am do happy to have gone out and done it. You really inspired me to think I can keep fit whilst going through chemo so thank you. Had my second chemo yesterday just the Paclitaxol this time. My main worry is I keep thinking I’m getting tingly fingers but my oncologist says too early yet for neuropathy. Did you get that side effect at all? Xx
Sammy 73 hey well done I am going to follow your tips 👍good for you xx
Don’t tell me about it. The doctor that gave me the diagnosis was a guy in his 60ies. He told me the news bluntly then asked me to take my shirt off and started to draw on my chest with a pen to show me where the tumors were located (like I did not know, I still had the marks of the biopsies) and took pictures for the multidisciplinary team. All that with a word of empathy and like talking a kid or a moron. Never felt so miserably treated by anyone.
Then he told me all about breast reconstruction assuming that it is definitely something I would want even before I could process what is happening to me or even knowing whether I would get a lumpectomy or mastectomy.
After that he sent me off with a nurse (thanks god the nurse that with during the meeting took the time to go through everything slowly and told me that it was up to me to decide whether I wanted a reconstruction of my breast) before barging in the room to burst out: ‘btw I forgot to let you that you will loose your nipple’ and he left.
The nurse was so embarrassed, she apologizes. I was so shock that I did not say anything. When I came home , I told my husband that I will refuse to be followed by this guy.
Don’t want to generalize but I was so thankful after to meet only female oncologists and nurses.
You are incredibly strong for going through this on your own and I hope this forum can be of some support even if only virtual.
lots of virtual hugs to you.
When cancer keeps on giving… 😂😂😂
Oh, I know my original surgeon was male - he treated me like a none entity, he never looked at me always looking at his screen, hurt me so bad when he examined me I could not take deep breaths for several days.
Fortunately, he did not do the op I had a lovely female surgeon who was as different again - she made me feel human when she came to see me before the op.
These things matter we are already scared to hell without being treated roughly and as if we do not exist.
I am not the same person as before all of this - never will be.
No people do not, cannot understand - they have (and I pray they never will) go through it.
There are days I hate myself because of the damn hormone tabs my hair is SO slow in growing back another reminder my feminity has been stolen, the weight is a constant battle and on it goes.
I am a strong person I did all of my treatment alone not just because of covid but I live alone with no family blah, blah blah.
I am incredibly grateful for the treatment I received especially as our NH is under such extreme financial trouble but deep, deep down I also realise how little we are really seen as a person - just another casualty of cancer IF we do not keep fighting for ourselves we will be lost.
Thanks @Love running
Was a good feast and I'm riding the 7th day after treatment like a bitch!! Lol. In control this time, preempting and successful!!
Have a good rest of the week and weekend xx
Yes, but you were allowed to take the capsules home😂 A freebie...
Good morning @Coastal
I have met few colleagues over the summer and I always end up minimising the whole experience. This said, I still think I have been fortunate with the worst side effects.
I want to avoid the situation you have been going through and also when I return to work I want my colleagues to act and treat as a normal colleague and not being awkward around me.
I already lost some confidence with how I look and how my body changed, I don't want to see the shock and the confirmation of it in other people face.
I feel sometimes screaming, 'I am trying to pull it together for you, so please do the same and pull it together for me and pretend that I don't look weird, different, tired, worn out and pretend I don't have cancer'
Good morning @Michelle21
My dream is the Svalbard half marathon in June 2022 and may be a marathon before I am 50 (in two years). Never run a marathon but it has been on my bucket list.
For your first run, no matter the distance or the time, enjoy the journey, the steps and the sweat. and the achievement. I hold my tears of joy each time I manage to run.
Yesterday I run a trail that used to be an easy warm up path and it was so hard. My body and strength are waring down week after week but I will try to keep going until the end (4 more weeks). I refuse to have chemo take this from me.
Glad you are still checking on us 😉 - how is return to normality?
Good rant - thank you!
I second it!
So tired of the pep talk from people that have no idea of what I am going through (and have been through) and how much energy it takes to just keep living with this damocles sword above the head.
Unfortunately, all medical devices, trials and protocols are designed by men for men... this is why women still die more often from heart attacks and have more side effects from medication and dosages that were not optimised for them
When I think that Viagra is reimbursed while there is still high tax on tampons and pads (or no access to them at all in some countries in the world).... don't get me started...
OK, I need to admit I am a feminist... Fortunately I live in Sweden where it is not a dirty word😉
@Guest user @TicTok
cod liver oil capsule? seriously?
There is all the hight tech equipment to measure, scan, photograph, investigate and document.... and then there is cod liver oil capsule...
I am sorry I had to laugh because but I could picture myself topless with cod liver oil capsule on my breast...
and why cod liver oil of all capsule you could use... It brings memories of my childhood when it was popular and my mum forced my sis and I to eat them. They were huge... may be this is why they use them. No other capsules have this size😂
Good morning @Sammy73
Thank you for your nice and wise words. We are indeed amazing strong and kind ladies. I learnt a lot about myself through this journey.
I hope that some sun came and shine on your homemade pizza and that you had a lovely bank holiday Monday.
Have a good rest of the week
Good morning @gardengirl200
You text was not negative, it is just how you feel at the time. Thank you for sharing it with us. With us in this forum, there is no need to sugar coat things as we all do (it seems) with our friends and family.
I fully understand you about the questioning and wanting to know more and to cover the what if... Like you I had two nodes removed and one had micrometastasis hence the chemo. My oncologist told me that chemo was preventive to get rid of the individual cancer cells that might have spread from the primary tumours and that might want to create new ones. They are too small to see in CT, MRI, mammogram... Yes this is good, but how will I know that the chemo has killed them all. No answer unfortunately... only time will tell. I know that I will be worried until the next mammogram and the next and the next. This B😡 Cancer will stay with us for ever.
Regarding the enlarged nodes, it can also be a temporary enlargement due to another small infection you have been fighting without noticing.
I can't stand the phone consultation, I want to see the face of the doctor when they tell me the results. On the phone, you can't scan for the face and the emotions. I like to read people's face.
In 3rd of October when I am hopefully done (last chemo planned 27th of September), I will run a 10k BC awareness race in Stockholm with 2 friends. It is a pity that we are not in the same country as we could have run together a star wars theme BC awareness race as 'Yoda and Jabba' or as 'Leia and Rey', 2 super strong ladies as we are 💪. By the way I am also an amateur runner and I started because I am stress eater and a gourmet and short... so not a good combination when the kilos are deciding to niche them themselves on my hips and tights. I am not at all the tall long legged runner. More the short sturdy type.
My husband has also booked a skiing trip for February 2022. It will two years exactly after I fell and broke my cruciate ligament while skiing. Let's see if I dare going on skies again... or if I will switch to cross country or go back to snowboard. But looking forward to the slopes somehow. Fingers crossed for us that there will be lot of snow and no covid.
Finally congratulations for finishing chemo... enjoy the return of some normality in your life.
Good morning @Guest user
Your feet spa sounds lovely. I should definitively give it a go. My feet and toe nails are not at their prime glory. Between the chemo and the running, they have suffered.
I hope it will help with the neuropathy. I am so sorry to hear that it might be the cause for you falling a couple of weeks ago and sending you to A&E. I hope it was not too serious although scary as you said.
How many more cycles do you have left? I have some signs of neuropathy in my feet and hands (mostly stinging at nights) but it comes and goes. I also sometimes feel it in my lips. Weird? I hope I can keep it at bait for my last 4 paclitaxel.
Keep up with the walking and keep on fighting. We will get at the end of it.
Good morning @amy46
I hope you manage your run the other day.
'No matter the distance, no matter the time, it is the journey, the steps and the sweat that matter.'
I am glad I could encourage you to not giving up on training and running especially if you like it. For me, It has been my life line. As I said it is very individual and not every day it is easy. Yesterday I went running on a trail I used to run for warm up and what used to be easy became so hard.
Keep going and keep trying. Stay strong.
Hi @Coastal hope yesterday’s final chemo went well and that you have minimal se’s. Onwards and upwards xx
@TicTok i have the same issues as you with some friends and family, ‘oh bless’ or ‘oh poor you’ seems so inadequate compared to what we are going through. I found this last time too and have come to the conclusion some people just struggle to show empathy.
@gardengirl200 your scan sounds like good news but if you still have questions can you contact your oncologists secretary and ask for a call back?
@loverunning Your training is really impressive, well done for keeping it going through chemo so far! I am looking forward to my first run although I know it is going to be hard as I haven’t ran April. My favourite runs to do are half marathons and I am signed up for Cardiff Half in March and Southampton Half in April. They were both postponed due to Covid. It’s good to think that live will gradually have a bit of normality and won’t always be appointment after appointment. x
Sammy 73 ….. that sounds like a good plan , what mouthwash did you you use . As mine sends me through the roof 😳 first time I have not wanted to eat also 😕x
My second dose and day 6 and its better than my 1st dose thank god!! 😊 but I've tried to get it b4 it gets me!! Lots of pain killers and mouth rinsing, antihistamines and small bursts of exercise, MRIs suck!! Annoying friends suck!! 🙄
Cumbrian lady…. lol yes definitely designed by a man 😁…..I only got one bean on the side with no cancer luckily the nurse did it as I would of swallowed it also 🤔xx
I hated the MRI scan so uncomfortable it had to be designed by a man😁 as for noisy, say no more.
I called the place you rested your breasts (egg coddlers) and did you have to tape a cod liver oil capsule to each breast as a pinpoint when they looked at the scan - first time they handed them to me I nearly swallowed them. I mean come on who would have ever thought you stuck them to your boobs🤣
Keep on trucking and ignore people who tell you to 'buck up' they have NO idea. Just do things in your own time - there is NO right or wrong in any of this we are all different.
Heaps of good wishes
Good morning ladies
sorry I just need to rant 😡…this docetaxel has really knocked me for 6 , but I am sick of a supposed to be better friend who is always patronising me as though I am supposed to be invincible and not have any effects it’s always oh you have done so well ! Oh well you are nearly there or well it was always going to be like this ! I don’t want sympathy but she has no comprehension of anything and just brushes it of lightly and I am fuming 😡 so in future it’s a yes I an absolutely fine thank you !!!
MRI went better than I thought as you have to lie on your stomach with face and boob holes , but they had made it more comfortable than last time by lowering the arms as that was really uncomfortable before …just the waiting game now ……. Is Docetaxel as bad as this every time? 😱…… love to you all rant donexx
Replying to all
Sorry I havent been on for a while, as we all know we deal with things in different ways, I feel like we've all come so far and now we are all having our own wobbles as things are slightly changing yet again.
Over the next 10 - 20 years this will change our lives but hopefully what we are going through now will help us.
We are all amazing, we are all very capable women but we are all sensitive to what we are going through. Good days, bad days but always a hope and positive as that's how we move on.
It's bank holiday Monday and no sunshine of course!! Lol. Hoping for a homemade pizza later in the garden with friends. Another day tomorrow.
Lots of love and luck ladies xxx
Sorry @gardengirl200 I’m not able to do a long reply now but just wanted to say don’t ever think you are not positive enough or that everyone else is more positive. I can assure you I have many down days and if we can’t vent it out here then where can we? We are experiencing something awful and it is tough enough so don’t be hard on yourself xx
Thank you Poppy for your wise and kind words.
I’ve just read again all your recent posts and you are all so positive with what we are individually and collectively going through that I feel rather ‘lame’ at the tone of my last post. You are right; we have it in our power to deal with this in a positive way, that really can be the only way. And one thing I have definitely discovered is that we are miles stronger than we ever knew.
I hope you all have a good week, that any treatments go smoothly and any side effects are manageable. Xx
It is such a hard journey at times one step forward several backward - but we are all doing brilliantly.
You are bound to be worried at times would not be normal but we have to trust those who are treating us I had 14 lymph nodes removed I often ache in that area but I think it is because I use that arm (it's my right one) it is a dull ache at times, not all of the time but I can relate it to when my arm gets tired.
The weight thing is so hard I am on letrozole piled the weight on - I have managed to lose 9kg not dieting as such but cutting back not saying it's easy - but it feels good to be sort of winning one battle at least. I am not a runner but I enjoy walking my local beach collecting shells and driftwood even that has been curtailed of late - but I will get there (wheverever that might be)😀
I have good days and bad days, on the bad days I don't fight them - I ride the waves and wait for a better one to arrive, I learned trying to fight everything is tiring so I try to go with the flow - cancer does make you look at things differently the less stress we put on oursevleves the better.
Lovely to chat keep strong lots of good wishes
@Coastal @Love running @amy46 @michelle21 @tictok
@noodledoodle @Guest user
hello all. I’ve not posted for a while but I read all your posts and you are so eloquent and accurate in how you describe what I am feeling. I am so glad to hear you are moving through your treatments, but sorry to note the individual hiccups.
I hadn’t posted because I had been waiting for CT results for over 3 weeks and I eventually got them back last week, over the phone at my pre chemo consultant chat. The results are good - ‘no significant abnormalities’ - is the total report and I am told not to put anything in to the word ‘significant’.
But I still am concerned that the other consultant mentioned in passing at the previous consultant meeting that my lymph nodes were enlarged. My consultant wasn’t prepared to comment on why he had said that and simply said that I should take comfort in the fact that the radiologist who wrote the report clearly didn’t think them enlarged enough to be significant. And now I have had my last chemo treatment, I have been signed off until a phone call in 3 months time, which is simply to see how the radiotherapy has gone.
You would think I would be delighted at the clear scan, and of course I am, but it’s like peeling an onion, once you remove one layer of worry, I find another one. I am convinced my lymph nodes are aching. Are they aching because of the docitaxel ( everything is aching) or are they aching because there is cancer in them?
It was such a quick phone call and sign off with the consultant that it’s only on reflection that I would like to ask more questions but then, perhaps I simply have to trust their professionalism and accept that they would have not have signed me off if they had any concerns. I am a lawyer and I am probably prone to over thinking. I want to leave no stone unturned and make sure everything possible has been done. It’s what I would do for a client in the legal world Is that unrealistic in the BC world. It just seemed so rushed. I want to ask ‘are you sure, are you sure the nodes are clear?? ’ but of course perhaps they can never be ‘sure’ , they can simply go through the standard treatment, which I have had. And the CT scan was already an extra which I had to push for.
I don’t really understand the significance of all the parts of the equation in working out prognosis. They removed 2 nodes and 1 tested positive but it had extracapsular spread which means the cancer has got out of the lymph node. This worries me a lot. But should it? Maybe in the scheme of treatment it is not a big deal. I want to understand more but, again, maybe understanding will make no difference. The NHS is wonderful, but sometimes I wish there was more time to ask questions.
I agree that the chemo coming to an end is wonderful but its protection ends too. Perhaps what I need to realise is that it’s normal to have these concerns, and not over think it. But, yes, it is slightly tricky that those who haven’t gone through this just don’t realise that the worry doesn’t end with the chemo.
And @Love running if you feel like Yoda, I am Jabba the Hutt. I have put on weIght with docitaxel and now my chemo is coming to an end I need to shift it. Your exercise regime is amazing and you must have been ( and I guess still are) very fit. Pre cancer I was doing 2 PT sessions a week, running 5k or so twice a week and walking the dog.
But I am a complete amateur in comparison and only run because otherwise I would be a total barrel. I am very often about half a stone over weight due to weakness for pancakes, chocolate and basically anything sweet. ( and eh plus crisps). I’ve maybe run 5 or 6 times during chemo - very slowly and about 4K. But it is wonderful for the spirits so I will start back properly next week or so. I’ve signed up to a PT who knows my background to include weight resistance as I gather that, as well as HIT, is important post BC. And I’ve booked some skiing, COVID allowing.
Apologies for sharing my thoughts in such a long ramble, and for being rather negative. I am usually so positive but I am feeling pretty rough on the docitaxel today and that is affecting mood. I’m actually going to cheer myself up now with a Magnum ice cream.
Thank you so much @Love running this is really helpful and inspiring. I don’t think I am quite the athlete you are but keeping fit and healthy has been a very important part of my life for so long and also benefits my mental health so much that I don’t want to lose it. It’s also why it’s such a bummer to end up here in the cancer club when I feel like I’ve worked so hard to jerk fit, eat well and live a healthy life. But that’s the thing it can still get you and here I am so I’m trying to stay positive, hoping that being fit will help me through. I really appreciate you getting back to me, it’s so helpful to see how well you have managed and very interesting to hear that you were recommended 30 minutes exercise with increased heart rate per day. I did a 5.5km walk this morning but I think I’m going to try a short run tomorrow.
Thanks again 😊 Amy x
@Michelle21 I'm so glad your last one went okay and I hope all is going well this week re side effects. Did they manage to sort out your date for surgery? Very powerful what you and @Love running say about how it has effected you and your real feelings versus what we say to others. I don't share how I truly feel with friends or family (apart from my sister) to protect them but also because I find it difficult to cope with their reaction. I'm more able to share with my oldest friends but even then don't want to burden them. I had my first zoom with a colleague from work last week (my first time 'seeing' anyone from work). This colleague is really lovely but she was tearful as soon as she saw my new look (ie scarf) and I ended up minimising all the side effects, saying how easy I had found it, how it wasn't that bad and leaving out all the bad bits to make her feel better. It makes me slightly concerned about seeing all the other colleagues at our team meeting - I find it difficult when people are tearful. You are both right, we have had to dig deep to find the inner strength to cope with this.
@TicTok I'm so sorry to hear about your aches - I have had bad pain and aches on Pacitaxel - but codeine did the trick for me along with hot water bottles - I feel for you having to go in the MRI machine - I haven't had to do that only the CT scan. I hope it goes well. Big virtual hug
Love to all of you wonderful brave women xxx
First I soaked my feet in one of those spas you fill with water and plug in added a foot spa gel and let them get all lovely and soft.
The massager is a nekteck shiatsu I bought mine off Amazon it is not one of the very expensive ones but it comes with good reviews basically it massages the feet to get the blood circulation flowing - you can also have the heating element on if you wish - simple to use, lightweight just plug to go.
So far I have used it for 4 days 2 or 3 times a day the effect is wonderful really gives your feet a good massage - far too early to know if it will help with the Neuropathy but it cannot harm and my feet feel so good after.
I fell over a few weeks ago outside the chemo centre I think it might have been due to the Neuropathy I hope it wasn't but if so then it was scary I ended up in A&E.
Yes I am like you my walking makes my day being able to just get up and go with NO worries is so uplifting if that was to stop then I would be devastated.
Hope all goes well for you - have a happy (remaining holidays).
Thanks for reaching out and I am happy to share what I have gone through and what I have learnt and still leanr.
This is my journey and I hope that it can help you. Sorry for the length of it.
I am an amateur trail runner (doing it for fun, no competition) and my favorite distance is 15-20 km. I used to run 3 times a week (a short run, a interval run and a long run). In February 2020, I feel skiing and ruptured my median collateral ligament (MCL) and my anterior cruciate ligament (ACL). No more running for me for a while but after rehab and surgery and more rehab (and COVID in the middle of all that), I was given the clear to run again. So I started running again up to 10 km until February 2021, when I got diagnosed with BC.
My first thought was 'no I just started running again and feeling great about it and now it will all stop again'. I was told that I would get surgery first. So between the diagnosis and the first surgery I run a lot to compensate, several times a week... never more than 10 km because of my recovering knee. I also searched and read a lot for scientific papers about training and running through chemo but also testimonies of cancer patients doing it.
I read two very good books, unfortunately one is in French.
- Run for your life. How one woman ran circles around breast cancer. Jenny Balker
- Les malades de sport. Un remède contre le cancer. Lea D'all'aglio et Vincent Guerrier (he had lymphocarcinoma cancer at age 23). This is the french one. It was good because the writers are journalists and they reviewed the scientific literature. There are a lot of evidence for the benefit of sport in treatment and prevention of cancer.
When I met my oncologist for the first time and I told her that I wanted to continue exercising and to my surprise she encouraged me. She told me that nothing was off limit, except swimming (and sauna, I live in Sweden 😀😅) because of the PICC line and the risk for infection. She told me 'don't start a new sport but continue the ones you were doing. You know your body, and what it is capable to do'. She said that a minimum of 30 min per day with a higher pulse was the Swedish recommendation from the oncology association. She also said that I might not be able to do anything at all and to get prepared for this possibility. This was individual but she encouraged me to try. After that, I was determined to try exercising through it all. Each time I met her, she is cheering me up to keep up. I know that it is different in different countries. In France for example, not all oncologists are promoting the practise of sport during chemo. The more conservative approach is to advice rest, which is also needed.
I got my first surgery on 16th of March and 10 days later I put on a double bra (to keep everything in place... felt like having a 18th century corset on😩), I put my running shoes on and I run 5 km. I cried the whole time of happiness. Unfortunately, I had to get a second surgery on 6th of April for getting clearer margins. This was not going to stop me, I did it the first time, I was up to do it again so 10 days later I put my running shoes again on and I run 5 km. Equally happy and proud. It was like I had something to prove myself. I knew I was going to go through hell and I was going to loose control, putting my life and health in the hand of doctors and nurses and chemo. Going through chemo would take me to dark places for hopefully bring me back to the light side. Running would help me to keep seeking this light.
I started chemo on 3rd of May. The plan was 4 EC every two weeks followed by 12 weekly paclitaxel. End date was expected 20th of September. This end date is now postponed to 27th of September because unfortunately I can't control my white blood cells. I also decided to try to run and exercise through chemo. And so I did and I still do. Some days are better than others and I am grateful for every drops of sweat and every minutes I manage. I am listening to my body and my body is loud and clear when it does not want to.
During the EC treatment, I was given 4 days of steroids and one injection of fligrastim (Pelgraz). While steroids take you on an emotional rollercoaster and sleepless nights, they also helped a lot with the running and training. They give you a serious boost (no wonder it is considering as a doping agent in competition). I was fortunate to not have too much pain and aches from the Pelgraz. I sometimes think that I could have mixed pain/aches from the medication for training aches. Either I went through it not too affected.
Day 2 after EC, I did core training, weight lifting in the outdoor gym and strengthening exercises at home.
Day 3 after EC, I always run. It was my best day. I never decide how much I would run and I would just listen to my body but once I even managed to run up to 12 km.
Day 5-7 was when my blood count would drop and my hemoglobin level were down the drain. So then, I could barely manage running 3-4 km. It just stopped. One day I was running and I had to stop at 4.8km. My brain was telling it is just 200 m to make it to 5 km but my body could not do this 200 m. I stopped but I was grateful for the 4.8 km. Day 7 was always the worst.
Day 8-14 my body slowly recovered and usually by Day 11 and Day 14, I could run again 5-8 km. In between, I tried and still try to do something every day for 30 min: cycling, walking, core training, going to the outdoor gym, taking the stairs instead of the elevator. I cycle everywhere in Stockholm as we have good cycling paths and I don't want to take public transports because of covid. I cycle with my youngest to school. This too, I forced myself to do every day to make sure I get these 30 min. On bad days, I walked in the forest.
I started the weekly paclitaxel on 5th of July. Although the drug itself is 'gentler' than EC, the weekly treatment took a bigger toll on me. I was given steroids only on the first day and with decreasing dose each treatment. This week was the first time without and I can feel the difference. Also, with paclitaxel comes the worries about the neuropathy. Again I was determined to not try to exercise and run.
Day 1 (or day of the treatment) I walk or cycle for 30 min to 1 h.
Day 2. I resume my Pilates class since it moved online. I do basic Pilates class for 50 min.
Day 3 I run between 5 and 10 km. This was the best day for me but it becomes harder and harder to reach 10. My body is getting tired and I am off the steroids.
Day 4-6. I try to walk, cycle, do some core exercises for 30 min per day.
Day 7. I run intervals. As I said it becomes harder and harder.
Bottom line, I never take any days, runs or trainings for granted. I never know if I manage or not and therefore I never set a goal to achieve. Exercising has kept me sane, as it shut off my brain and I don't think about cancer. I think it helped me so far through the chemo side effects and I feel fortunate that I did not experience them too hard. Some thing, I still tape my scare since the surgeries. I will do so until radiotherapy. I was told to do it for three months after the last surgery. I kept doing because I wanted to avoid rubbing from running (although still running and exercising with a double bra). Not sure it helps any but I think my scare looks quite thin.
I still have 5 paclitaxel to do. Next one is tomorrow if my white blood cell count is good enough. Then I need 5 weeks radiotherapy, 3 years of zoledron acid and 10 years tamoxifen. I don't know how well I will tolerate the rest of the journey but what I know is I will try to continue to run and train. I can't live without it.
I hope you can resume your running and training and I would encourage to do so. It has only brought me benefits. Sorry for the lengthy text.
I send you lots of energy for your return to training.
Thank you for sharing how you are caring for your arm. I do not have lymphodema but I will get 5 weeks of radiotherapy in November and I don't know yet whether I will get the arm pit radiate or not. I have had 2 nodes removed of which one has micrometastasis. It might be the case and then I will fall into the risk of developing lymphodema. It is good to be informed on what other do (as you rightly said).
Neuropathy, especially in the toes is the one of the side effect I am the most worried about, since I have started weekly paclitaxel treatment (will get my 8th one on Monday). I have had some signs of it both in the hands and the feet and mostly at night. I wake up with the sensation of sharp needles getting under my skin. At the moment, it is temporary feelings, and it goes away. So I have been told by my nurse that it is fine.
I am a runner and not being able to run (which I just experienced before BC because of a ruptured cruciate ligament) would really sink my mood and send me on a downhill slope. The foot massager sounds nice. Can you share the name of it?
You are so right, we can let ourselves down. We need to keep fighting and somehow find the energy to keep us going and enjoy the present moment. Each good day is a good day taken.
I wish you a wonderful Sunday. Lots of hugs.
I’ve just started my chemo, 12 weeks Paclitaxol with Carboplatin every third week then two weekly EC for four cycles. I found you when I was looking for people who have tried to keep up exercise through chemo. Pre cancer I was running 5k three times a week, had a PT once a week and walk my dog 5-6k most days too. I’ve had a WLE and then a licap flap then a port fitted so I have only had two short runs in the last few months when my surgeon said it was ok. I feel pretty ok two days post Paclitaxol and Carboplatin. Did you run straight away? Any tips for me about best days and what to do? I’ve still been doing good walks most days apart from a few days post op when I reduced them. Glad you are coming to the end of your treatment. Amy x
I started to use my arm as normal as soon as it was possible - as it was my right arm I had no choice.
I do protect that arm from the sun, am very careful not to cut myself as well as keep that hand away from hot water.
My arm does sort of tell me what I have overdone it, it gets prickly and sometimes the arm aches a little so I let it rest.
I use moisturiser on it several times a day using a downwars motion as well as drink lots of water.
I like walking but at the moment that is sort of semi curtailed as I have chemo Neurotherapy in my toes (I think I feel more down with all the side effects than I do about cancer) you go through all of the treatment to then be put on hormone tabs which change your life drastically as well as the other side effects it's like a double/triple whammy.
I have been reading your posts and find them very lifting as well as informative - we owe it to ourselves not to let this beat us as hard as that is at times. It would be so easy to just let go and give in - but that solves nothing.
I like to read on here and other informative pages what other breast cancer sufferers have used and done to work around any setbacks and complications - then if possible find my own routine whatever into trying to make that work for me.
I have just bought a massager for my feet suitable for Cancer Neurology not going to let this stop me from doing what I like.
Thank you for your lovely reply - good luck with your continued treatment and safe journey.
I second that exercise helps a lot, not only to keep lymphodema under control. In my case, it kept me sane because when I exercise I don't think. I shut off my brain and concentrate on my breathing and the movements.
As I am not allowed to exercise in a gym, I did a lot in outdoors gym and I run/cycle which forced me to go out and fresh air. It forced me out of the couch and the house. Some days are of course harder than others. I also listen to my body and adapt what I do to what I can do.
I believe it also helped me with the muscle pain (may be confused with training aches🤔), which I did not have too much.
Here in Sweden, exercising minimum 30 min per day (meaning doing something with a higher pulse) through chemo was highly recommended.
I hope I can continue to train until the end (5 more weeks of paclitaxel is nothing goes wrong). But I know it is not possible for all of us and it might not be possible for me either, when the pain and the discomfort is getting too strong.
Keep moving, keep strong.
Lot of energy to you all - and it is Friday!
You wrote precisely how I feel. Thank you for sharing it.
I feel myself lucky in many ways because I have not experienced much discomfort or pain and I am still able to train a bit.
But, I am exhausted of pretending that I am fine.
- Fine physically and capable of doing everything as usual,
- Fine with how I look. I look like an overweigh baby yoda: bald, wrinkle, looking old with a younger face, almost greenish in my face from the lack of sleep
- Fine with having embarrassing hot flushes leaving me like a sweaty baby yoda 😅(just watch the new season of the Mandalorian - I might just be part of the cast 😀)
- Fine with the looks of strangers wondering what on earth is wrong with me
- Fine when people I know don't recognise me because of the way I look
- Fine mentally because I would tell anyone what is my head, they would freak out (I freak myself out with some of my own dark thoughts)
- Fine with all the good advice I received from well-intentioned people and friends about this wonderful mushroom they read about and that boost your immune system (and themselves won't get vaccinated)
- Fine with the cheering up that it is only one week delay when you have gone for months of treatment
- Fine with arguing with friends about the reason to take the COVID-19 vaccine or why the pandemic is not over and I still need to be careful and can't meet indoors
- etc the list is long
This say I am so happy for you that you have done your last chemo. You have been a support to all of us and your incredible positive attitude has helped me a lot. You always have the right the words and advice. You are an inspiration. I am forever grateful to have met you on this forum.
I am glad that you will continue to check on us once in a while.
Lots of love to you and enjoy the freedom of being PICC line free.
Good luck today for your MRI and I hope you can manage the aches.
Sometimes, I think it might be could to let go what we have in our chest and and tell what we have in our minds. We are always so careful to protect everyone else from the discomfort of the disease. Sometimes we should just say it as it is, no matter the discomfort because this is the reality of our lives. It takes so much energy to keep the smile on and pretend we are OK. Even if we are OK physically, because we are lucky enough to not experience side effects, mentally we can be a wreck.
lots of positive thoughts sent to you today