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MAY 2021 CHEMOTHERAPY STARTERS

Michelle21
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@gardengirl200 @Glad the implant info helpful. I don’t have a throat problem but my gut problem also causes me to burp a lot. I’m thinking these are hideous chemicals that kill our cells, damage our veins and hopefully kill our cancer and whilst doing all of that other parts get inflamed. When did you finish chemo? Have you called your treatment line to see if they can give you anything? Apparently we are still under our chemo units for 6weeks post chemo. X

gardengirl200
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Hello everyone, 

@Michelle21 Yes, I start radiotherapy on the 20th. I didnt know that re implants and radiotherapy so thank you for informing. I suspect big wait here too for the DIEP op. 

I would be up for a run one day for a BC event. 

Re docitaxel etc side effects, I still have the 'burnt' feeling over my mouth with my tongue etc having a white coating ( presumably due to 'killed' skin cells) but it is getting better and my sense of taste is coming back. But ( and I hope this isnt too much info) just as my mouth is getting better, I feel like it is 'tight' when I swallow, like I can feel the swallow more than usual ( if this makes sense) and I am burping which I never usually do. I expect this is simply because the lining of my throat has also been impacted, but has anyone else had this experience?? 

Michelle21
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Hi everyone

i am now two weeks from my last paclitaxel so thought I would report how I’m feeling. Re SE’s I still have a weird taste in my mouth but not as bad, the neuropathy on my toes isn’t hugely different but not having any pains at night, my finger tips are definitely less painful. I cold capped but my hair is still falling out. Also I have a bloating in my abdomen particularly after eating. This isn’t a standard SE apparently and is better than a week ago but not gone. On the whole I feel good and much more like me again. I’ve been out for lots of lovely lunches and dinners although I’m sticking to outdoors as I’m still worried about Covid/immunity especially as I have surgery yet to come. 
I saw the surgeon yesterday and all went well, he agreed a double mastectomy with no recon for now was a sensible choice for me. I should get a call with the date today. 
@Love running I love your running analogy. I like you had to draw on all my strength to get through the last 3 treatments. I felt as though I was falling to bits each week but you get all of your strength together and get through it. It would be great to see you in Cardiff, you will have a room here to stay if you wanted. It would be amazing if everyone from here met up and walked or ran one of the BC events. I would be there for sure!
I am going to attempt parkrun on Saturday, I am so excited about it even though I might not be able to run up the large hill in the middle! Wish me luck!

@TicTok 🤞for you MRI results, I hope they are good and that your bloods show you are ready for another blast at Boris.

@gardengirl200 I was told yesterday that implants wouldn’t be an option for me as I have previously had radiotherapy. Apparently implants never work very well after rads, so the only option for me is the DIEP which is where they take tissue from your back or tummy and move it  to your breast. Here there is a 3 year waiting list which is ok for me as I would like a 3 year cooling off period after everything.  Are you having rads? 

@Cumbrian Lady body shaming really says more about the person who has said it than you. 
@Coastal how are you getting on post chemo? @Purpledaze how are you doing? 
@noodledoodle hope you are still getting on ok with the carboplatin, presumably you are almost at the finish line now? I hope it is ok for you. 
@amy46 well done on the 5k, keep going! 

And to anyone else who may be reading this, have a good day xx

 

TicTok
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

To all you ladies I have just been catching up with the weeks posts as I have had my best week I have been out and about enjoying the lovely weather …. You ladies are so inspiring and been through so much with your opps already done and the hormones and the sweating , insulting people 😡my hat goes off to you all….. just been for my bloods I hope to find out tomorrow my MRI results , not sure my bloods will be ok as the docetaxel upset  my bowels and nothing much has stayed in 🙄….i feel after reading more about docetaxel I should embrace it even though it’s bloody horrible as hopefully will finish Boris off and any babies the beast might have produced .

love to you all xxx

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Good morning @amy46 @gardengirl200,

Thank you for you kind words and for all the cheering. It means so much to me, I feel so much better today.

I am glad if I could give you the confidence to put back on your trainers and give it a try. Just imagine, I am standing next to the road and cheering you.

What you describe feeling even more alive and uplifted is exactly how I feel when I run despite the tiredness and the pain. I do sometimes cry while running because of this feeling. It reminds me that it is still me, I am still there and I still can do the things I want and love.

I have a dream that we ladies in this forum meet at one of the BC awareness race and we run/walk together as team. A team of amazons, tsrong and beautiful women.

Keep running, keep walking, keep cheering, keep fighting one day at the time.

Love you all,

 

gardengirl200
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Wow @Love running , that  is such a beautiful analogy. You write beautifully. You absolutely will get there. You and @amy46 have inspired me to get my trainers out tomorrow and see how I get on. I’ve not run for 4 weeks cos I found the docitaxel hard, but I think I will make a start getting back into it. @Cumbrian Lady I echo what @Love running said about the body shaming. I don’t understand why anyone would do that. It must come from a place of their own unhappiness. Happy people are generally not horrible. 

take care everyone xx 

amy46
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Love running keep going you are so close! I know you can do it, but it’s ok if you need a little rest too. Yesterday I ran 5k in my pre cancer time. The sun was shining, the countryside was beautiful and I was listening to some of my favourite songs. I felt so alive and uplifted and even more like me than I felt before if that makes any sense. You have inspired me to feel that I could do it so know that I am cheering you on for the last bit of your race with all of my heart and actually a few tears in my eyes as I suddenly feel rather emotional writing this. You have got this. And so have all the other amazing brave ladies on here xxx

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

To all the 'May starters and finishers' 2021,

Since I am a runner, I will use running as a metaphor about how I feel this week. Sorry about the running theme🙄

This week I feel like when I run a half marathon and I reached 18 km... I pushed through the pain and tiredness and there is only 3 km left to the finish line. It is so close, but feels unreachable. 

What keeps me going is knowing that there is a finish line, and that there are few of you ladies that have made it to the finish line. I want to join you there and celebrate the end of this tough race.

What keeps me going is that I am not alone running, I am surrounded of you ladies that like me are almost done but not quite yet. I will run these last 3 km with you and cheer for you. So that we all make it to the finish line to celebrate.

This last round on Monday (paclitaxel 9 out of 12) hit me hard despite being a lower dose. I am so tired in my brain and my body. But I know the finish line is only 3 weeks - 3 rounds of paclitaxel away. I can do it. 

Thank you all for being there. 

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Michelle21 

Cardiff was not on the list but after checking the website, I might put it on.

Not sure if I can manage to train myself up to run 21 km by 27 March 2022. I have many friends in the UK so it could be an excuse to visit few of them:-)

Meanwhile I keep on dreaming... about all the runs and races in the future and all the cheering. I am so looking forward to hearing it again. Total strangers cheering you, telling how strong you are. It almost brings tears to my eyes. 

Have a great day and I hope you will get all the answers you need before your mastectomy. 

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Hi @Cumbrian Lady 

Reading your message and I can only repeat myself, you are so strong. You are not only a strong soul but also a strong body. 

I am so sorry that someone body shamed you and it managed to hurt you. Your body, our bodies have gone through so much (surgeries, treatments, radiations, reconstructions, blood samples, CT, mammograms etc), we fell, we pick ourselves back from the floor and, you are and we are all still standing straight fighting this C on our two feet, because of our bodies.

Our bodies are telling our heritage and our stories, genetics, pregnancies, eating disorders in teens, diseases... Our bodies are our armours and we should love it for all the battles they have won for us. We should never be shamed or be ashamed of them. 

I relate to you, regarding hot flushes and I have not even started the anti-hormone treatment yet. How much can a woman sweat is my constant question at the moment.

I hope you will be able to have many more get-together with your friends and find back the normality.

You are so right, what is in the past is in the past. There is nothing we can do to change it while the present is here and now and we can embrace it and, the future is to be written.

Take care,

gardengirl200
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Michelle21 

I think that is the case with the expander but you had better check. At the time of my diagnosis no one sat me down and explained options re surgery and reconstruction. My surgeon was a man of very very few words. He explained that because my lump was 50mm I needed a mastectomy and I accepted that, and was grateful it all happened quickly. It was during lockdown and I suspect that limited options. It is only since reading about others’ experiences ( eg Jenny Murray of women’s hour, Victoria Derbyshire, the news reader have both written about their experiences and mentioned they had got an expander)  when I realised I had not had one. I’m still a bit vague about reconstruction options tbh!! I’m just hoping it comes clearer down the line. I do hope all goes well today. Xx 

 

Cumbrian Lady
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@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
Poppy xx

 

Michelle21
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

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

gardengirl200
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Cumbrian Lady 

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! 

 

gardengirl200
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@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 

 

 

 

Michelle21
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@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

Michelle21
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@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! 😂

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Sammy73 

Totally agree with the 'Soft non wired bras are best I wont ever wear an underwire again!!!'

Same here...

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

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

Sammy73
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@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

Michelle21
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

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.  

@Cumbrian Lady 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

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Hi @amy46 

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

amy46
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

hi @Love running 

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

TicTok
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Sammy 73 hey well done I am going to follow your tips 👍good for you xx

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Cumbrian Lady 

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. 

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Cumbrian Lady 

When cancer keeps on giving… 😂😂😂

Cumbrian Lady
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Love running 

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.

 

Poppy xx

Sammy73
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

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

Cumbrian Lady
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Love running 

Yes, but you were allowed to take the capsules home😂 A freebie...

 

Poppy xx

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

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'

 

 

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

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?

 

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

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. 

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@TicTok 

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😉

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Cumbrian Lady @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😂

 

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

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

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

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. 

 

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Good morning @Cumbrian Lady 

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.

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

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. 

Sammy73
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@TicTok  dentyl menthol. 0% alcohol xx

Michelle21
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

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

TicTok
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

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

Sammy73
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@TicTok 

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!! 🙄

TicTok
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

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

Cumbrian Lady
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

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

Poppy xx

TicTok
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

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

 

Sammy73
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

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

Michelle21
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

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

gardengirl200
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Thank you Poppy for your wise and kind words. 
Fleur xx 

gardengirl200
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

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 

Cumbrian Lady
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Hi @gardengirl200 

 

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

Poppy xx