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MAY 2021 CHEMOTHERAPY STARTERS

Purpledaze
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@TicTok that's great news to hear that your last MRI showed Boris is shrinking and lymph nodes now clear. So pleased for you! Hope tomorrow's chemo goes to plan and things move smoothly for you to the end of chemo xx

TicTok
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Sammy 73 …. So sorry your treatment has been delayed 😟 you must be so gutted , I know I would be , good luck for the 30th ..

gardengirl200 …. I have been taking vit D and zinc since the beginning I asked and they said that was fine .

purpledaze ….well done for reaching the end of your chemo … I get where you are coming from as everything drops off and you are alone after like you say always having appointments,good luck with radiotherapy …. Ps like the song list 👍.

love running …I would definitely be bringing up the rear , I try a bit of run / walk but do loads of walking 🤨.

well my bloods are ok for my 6th chemo tomorrow so I will be following Sammy 73s tips and hope for a better time 😄

I also got good news from my MRI Boris has been destroyed significantly and my lymph node is now clear 😄 so looking forward to hopefully finishing him off with my next 3 chemo’s 

Love to all xxx

Purpledaze
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@gardengirl200 sorry, I don't know anything much about vitamin supplements.  Asking your oncologist sounds like the best bet.  I can say, however, that I will be joining you in bringing up the rear in the group run 😂 - am definitely going to dust off those shoes; love the idea of all doing a run together!

Purpledaze
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Hello everyone,

Sorry to have been so out of touch. I'm not sure where the time goes in this strange BC landscape we are traversing.  I think the chemo fog that I have read about has definitely enveloped me as I have found it harder to concentrate on more than one thing at a time, or for very long!

Sounds like we've all been through some really challenging times over the past weeks.  I really hope that for all of you things settle and no more nasty surprises or setbacks in treatment schedules.  

I have now reached the end of my chemotherapy and can't quite believe it.  I had my final paclitaxel last week, but couldn't celebrate in any way until I had finished the last of the filgrastim injections (ughhh), which was yesterday.  It's strange, I was so looking forward to this moment - the end of the dreaded chemo, and don't get me wrong, I am sooooo happy to have that behind me, but now it's happened I find myself feeling kind of adrift, almost as if there is nothing to 'hold on to'.  It's like it's been 'chemo-chemo-chemo' and then suddenly nothing - no blood tests, no check-in calls with the oncology team, no follow-up appts, etc.  This and the tsunami of tiredness have made me much more emotional than I have been before now.  Like others of you have mentioned - I've been getting weepy at the drop of hat... However, I've been having a good talk with myself - LOL - and am determined not to let lack of chemo derail me (that would be ironic since chemo-world certainly didn't exactly fill me with joy)!!

Next step is radiotherapy. Had my planning scan last week - felt rather like a slab of meat at the butchers 😂 but have to say the doctors were really lovely and set me at ease.  First RT session is on 22nd Sept - I'm only having 5 sessions, so should have finished by end Sept.  I've ordered a bottle of my all time favourite wine in readiness - I haven't drunk alcohol through treatment so i will likely fall off my perch when I do have a drink, but it will be with a big smile on my face!

The posts about running are very inspiring - can almost hear the cheering and feel the heart pounding. My running shoes have been winking at me from the back of the cupboard and I think I will give them a knock-kneed wobbly out of breath outing soon.  Like some of you have shared, I have also felt the pounds piling up as eating was either the only time I didn't feel nauseous or the only thing I had energy to do! So getting back out there for longer dog walks and going for a run would be good; I'd like to increase my energy levels and fitness as I feel so terribly unfit at the moment.  It would be good to have a challenge as well.  This is what I love about this forum, through your advice, sharing experiences, and encouragement, I have found inspiration - wonderful!

Music has kept me sane during this last push to the end of chemo, and I've started making a playlist of songs that for different reasons resonate with me about this crazy BC experience - I have quite a warped sense of humour so some songs play to that - and I thought I'd share some of the list with you lovely ladies who have helped to keep me sane!

* Tightrope - Janelle Monae (how it often felt/feels in treatment... and failing that a great dance tune to get me off the sofa)

* Hear My Voice - Celeste (because sometimes having cancer can feel like having no voice)

* Who Needs Sleep - Barenaked Ladies (for all the sleepless nights)

* Loving The Alien - Bowie (made the list because my husband lovingly calls me his "alien" thanks to the no eyebrows, no hair, no eyelashes 😂)

*Gonna be Sick - The Do (with lyrics of "I'm gonna, I'm gonna, I'm gonna throw up" how could it not be on the list 🤣)

* Just Face Your Fear - Curtis Harding (says it all...)

* Que Vendra - Zax (reminds me that cancer doesn't define me or have to shape my life)

* This is The Day - The The (for last chemo day / test results day / end of treatment day)

* Brave - Sara Bareilles (for all the words unsaid)

* Pink Panther Theme tune - Henry Mancini (because in amongst all the seriousness, a little silliness really helps)

* Hang on Little Tomato - Pink Martini (resilience)

* Beauty in The World - Macy Gray (despite the s*#! of BC there's still lots to love out there)

* Talk To Me - Cavetown (sums up this forum and the support and reassurance I have found here)

* Don't Stop Thinking about Tomorrow - Fleetwood Mac (mantra running thru my head on the worst days - keep looking forward)

* A Pocketful of Sunshine - Natasha Bedingfield (love the idea of having a pocketful of sunshine to draw on when needed - uplifting song)

If anyone has other suggestions, I'd love to hear them to add to the list!

In the meantime, I hope you're all doing better than yesterday and running, sofa-surfing, dancing, walking your way closer each day to smashing BC way over the horizon xx

 

 

gardengirl200
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Hello all, I have another question ( sorry). 
Does anyone have any info on vitamin supplements? Ie whether they are safe post cancer or not. I know the official line is not to take them during chemo but what about afterwards. A friend mentioned to me that they are not recommended post BC on the basis that they stimulate new cell growth and this can stimulate cancer cells in the same way. I’ve googled it and there does seem to be research that backs that up. I will ask my oncologist when I have my final call with her post rads but I just wondered if anyone had come across this issue, as it surprised me. 

xx 

gardengirl200
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Michelle21 do you think we won’t be eligible for the third vaccine/ booster? I thought we would be as all have compromised immunity. Covid numbers really high in Scotland at mo. 

gardengirl200
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Love running  We really should all do a run together! Although I might be bringing up the rear! Thank you for the tip re salt. I spoke to my GP nurse yesterday and she suggested the same and also prescribed the fluconazole that the administrator here recommended, so hopefully that will sort it. Of course I was paranoid the feeling of constriction was oesophageal cancer but I am told this is really very unlikely. But as we all know, this process sets us up to worry about everything. 
On that note, thank you @Michelle21  for the mention of that book about living post treatment ( can’t access your message/ the title at mo ) but I’m definitely going to take a look at that. Xx 

 

Sammy73
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@gardengirl200

@Michelle21 

I just had a rash come up on my leg last Sunday, I have felt genuinely well especially as it's my good week b4 treatment was due!! It hadn't gone by wednesday so went to pharmacy and still there friday!! So doctors it was, I have been lucky so far, headache and my rash is now sore but fingers crossed nothing else, my chemo manager said this can happen and also with radiotherapy as its all to do with dormant chicken pox it stays in us and rears it's ugly head as shingles,usually once we are over 50!! Im 2 years off!! Obvs!!

Low immune and nerve endings !!! Doesn't help not having my right arm lymph nodes I'm sure!! Joy oh joy!! 

We are hosting a big work thank you party for our team tomorrow so had to ring round everyone to check they have had chicken pox!! And not pregnant!! 

Nothing is ever easy 😪 

Just need a break from all this shit!! I know it will come.

I tried a book about eating, living better i put it down after I realised I don't want to be a vegan/ vegetarian and I know we all indulge sometimes and so what, all my meals I prepare from fresh daily, we allow ourselves  a treat once a week, going out or takeaway and I have minimal coffee, but I enjoy wine and that's how I roll. I walk with the dog daily, I would go mad if I was on a strict diet too. 

We are who we are and cope the way we can. 

God please let the 30th take place and I will be rid of my picc line at last!!!

Have a great weekend!! Xx

Michelle21
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@gardengirl200 best of luck with your radiotherapy,  the finish line is so close for you x

Michelle21
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Love running Yay I’ve just returned from parkrun and it was great! I got emotional crossing the finishing line and the volunteers were cheering me over. Another piece of me reclaimed! 

I totally get where you are coming from with a bit of breathing space before or if you have recon. It did make me laugh about the nudity being normal in Sweden, it reminded me of a holiday in Slovenia where everyone went naked into the sauna. As I’m sure you know it’s just not British! 😂Regarding your recon the nipple tattoos look very realistic and quite easy to do relative to what we have been through.  I had lumpectomy last time and although I was slightly smaller on that side it was not noticeable in clothes. My body and mind most certainly need a rest before I consider what’s next, if anything. 
I also ate to rid myself of the bad taste and drank a lot of sugary drinks for the same reason and put on quite a few lbs. I’m happy to report I have already lost a couple of lbs by getting back to a normal diet/exercise. I’m sure you will too once chemo isn’t controlling what you eat. 
🤞 your Neuropathy doesn’t get any worse and that when Sweden drops all its Covid regulations your hair stops social distancing!  All restrictions have been dropped here and even with a high vaccination rate cases are quite high. I am keeping a close eye on the hospital numbers and hoping it doesn’t delay my surgery. Our health board has just said there are to be no hospital visitors from now. No we will not be eligible for the 3rd vaccine. I had both of my jabs over 6months ago so am a little worried that it’s strength is waning but I can’t do anything about that. I am just being careful where I go. 
The runs in Stockholm sound good fun, especially the picnic at the end. I will definitely get to Sweden one day soon! x 

Michelle21
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Arrgghhhhhhh just typed a reply and lost it, very annoying! So I’ll try again….

@Sammy73  I’m so sorry to hear you have shingles and that has postponed  your treatment. I have also spent time wondering what I did that was a so bad in life! I have come to the conclusion it was bad luck getting BC once and really really bad luck getting it twice. Like @gardengirl200 says we are all due a mountain of good luck after this. I hope you aren’t too poorly with shingles and that your last Docetaxol is kind to you. x

@Coastal I haven’t heard of the book you mentioned but from what @gardengirl200 says it basically sets us up to fail, we all have to do what we can and what makes us feel better and in control. Regarding the future it is hard to think about and you are right you will never be quite the same as you were before. I used to get quite angry when people talked about the new me as I was happy with the old me and didn’t want to change however we are always evolving as people, we are not the same after marriage, children, losing parents or someone close, or any difficult life event. I remember coming to terms with this and grieving over losing the old me. Those feelings didn’t last for long as we have to move on in life but are horrible when they happen. I can also say that although looking into the future might seem over whelming now it does get easier the further away from all of this you get. 
If you haven’t read it Google ‘After the Treatment is finished’ by P Harvey. It may help, I found it quite useful. X

gardengirl200
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Sammy73 hi there. That is tough. Really shit. Bloody bad luck to get shingles which in itself I gather isn’t that nice. How are you feeling with it?  I just hope there is a big pile of good luck waiting for us all round the corner. Keep strong. There are certainly bumps in the road - some bigger than others - but you/ we will get throufg this treatment. Xxx 

gardengirl200
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Coastal 

hi there. My mother bought me that same book. I found it incredibly upsetting and in the end I put it in the bin as it brought me down so much. Obviously everyone is different and maybe there is something in it, but I knew I could never eat the Uber strict/ extreme diet she advocates and would just feel guilty/ a failure. I also didn’t like how she undermined the oncologists/NHS , in whom I feel I need to have a certain amount of trust / respect as the professionals in their field. I spoke to my oncologist about it / diet generally and she just repeated advice to eat a healthy balanced diet most of the time, but not to deny ourselves the odd treat. Although losing weight is different; I am determined to do that. So I am sorry that book has upset u too. 

The book I value and return to is the Complete Guide to Breast Cancer by 2 doctors who themselves had breast cancer. They have a chapter on diets and look at the scientific evidence. None of these faddy diets have apparently ever been properly tested in a scientific way. 

That said, I have cut out processed food, almost cut out red meat, alcohol and caffeine, and massively reduced cow’s milk, and am trying to loose a bit of weight. I guess we all just have to make the choices thst we feel are right for us and that are sustainable. I just knew I didn’t have the ability to follow that book. 

I have just had my pre radio scan too. ( also found it emotional) . We must be on v similar time line. When do you start yours? . I’m the 20th. 

Sammy73
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Coastal  hi, emotions are funny things, especially with everything we are all having to go through!! 

I was due to have last chemo on 16th September but I found out yesterday a rash on my leg is shingles!!!! So banned from chemo suite till 27th September  for bloods and picc line flush and last chemo and picc line removal on 30th, I cried like a baby!!!!! Does somebody hate me this much to keep delaying this god awful treatment!!!!

When that goal post is moved or it actually happens its all stressful and emotional, we are all human!!

Have a good weekend ladies x

Coastal
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Thanks @Michelle21 I've had an up and down time since my last chemo.  Initially euphoric - as yes, I've finished!  However, I started reading a book I'd ordered some time ago (Jane Mclelland's How to Starve Your Cancer) - which was a pretty stressful read and really brought me down again.  The book is all about changing your lifestyle to be the healthiest you can be, with a pretty stringent change of lifestyle.  It's also quite difficult to read as uses a lot of scientific jargon.  It made me think about the future post diagnosis and how although I want to put everything behind me and go back to normal, things have changed and I can't go back.    

I had a haircut at the cancer centre yesterday, they were so kind to me I couldn't stop crying in the car driving home.  It's the first time I've done that properly since the early days of diagnosis, it felt like I've not really come to terms with the whole thing. I also cried today at my radiotherapy planning appointment which is really out of character as I really try to keep it together generally.  It's probably a really good time to let it out this way, and the radiotherapy nurses were lovely to me.    

Sorry, I'm rambling a bit, I guess I think it's such a traumatic thing to go through, I can't quite get my head around it.  

I hope everyone is okay and you all have a lovely weekend 😍   

Lots of love Nickixxx  

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@gardengirl200 

Let's dream together about meeting for a run for a BC event - I would be ready to travel to the UK. It would be great to meet after all we went through together.

Not sure if it can help. When I was breastfeeding and my baby got thrush, the nurse told me to use a new very soft toothbrush and dip in 'Vichy water' (sparkling water with a high salt content like Badoit or Vichy St Yorre, not sure you can find these brands in the UK but there must be equivalent) and brush gently the tongue and let the baby suck the brush once or twice a day until resolution of the infection. The brushing was removing gently the thrush, which the baby then swallowed and cleared through their bowels and, the salty bubbly water might have had some anti fungal activity. It did the trick on my babies.

I suppose that transposed to grown up, you could gargle some salty sparkling water and brush gently. In any case, it seems harmless and might be worth to try in combination with what your GP tells you.

I hope you will feel better soon.

 

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Michelle21 

I am glad you feel good about your surgeon meeting and with the decision about the double mastectomy without reconstruction. I can only imagine how difficult it is to decide what is the best. I only had a lumpectomy loosing my nipple. The surgeon told me that we will talk about reconstruction earliest one year after the last surgery. I am happy to have this time to think. While I consider reconstruction, I am also tired of having my body being manipulated and getting treatments and blood taken. I feel that I might want my body to get a rest from most medical procedures. For the next 5 years I will have to get anti-hormones treatment injected in my tummy once a month and infusions against osteoporosis every 6 months. I feel I need a break. This is of course very individual and it is my own thoughts at the moment. I am going to try to own my new nippleless boob and the scar. The test will be when returning to the pool and the sauna. Here in Sweden, there are no cubicles in the changing room and no separated showers, there are common changing where everyone undresses. Nudity is normal and actually no one really looks at each other. I will see how self conscious I will be.

Thank you for reporting on the after paclitaxel SE. I am very interested as I am going for my last 3.

The bad taste is a SE that came now the last two weeks for me. I did not have it before with paclitaxel. I was so happy after the EC which gave me the horrible metallic taste on everything I was eating. I have been trying to get rid of it with mouth wash but it doesn't work. Instead, I have been eating more because when eating is it not as bad. It gets mixed with the food flavour. And of course, kilos are pilling up... but I will take care of that later.

For the moment, my neuropathy is under control. It comes and goes. I get a reduced dose of paclitaxel since last week, so hopefully it won't get worse. 

Hair wise, it is interesting that you hair are still falling now that you have finished. I did not cold capped. I went for the bald look but since I started paclitaxel they started to grow back a little and I even had my first haircut last week-end. It was more to even out than a hair cut. At the moment, my hair are still following the pandemic restrictions and are social distancing with approximately 2 m between them 😄. But I am hoping that there will be some thickening in the coming weeks, so that I could drop my cap and walk around proudly with my 'shaved head'. After all, I never wore my wig, it was too warm and I sweat too much. 

I hope your tummy problems will get better and better and that will enjoy more and more lunches and dinners out. Like you I am sticking to the outdoors rule. I don't want to jeopardise the course of treatments by getting a cold or Covid. Sweden is going to ditch all restrictions on 29 September. It is a bit scary although I have to say, here in the mind of people COVID is over. There are almost no one wearing face masks (well not many ever did as it was only a recommendation for the tube in rush hour and only came this April) and there is almost no alcohol gel at the entrance of store. I even got annoyed at the hospital where staff go around with face masks and when the alcohol gel dispenser were empty twice at 8 am. On the positive side there is a high vaccination rate and since at least 15 % of Swedish population (probably more as testing was rubbish at the early days and now testing is very low) has been infected, si there is some kind of immunity. But still, I am not confortable with the lifting of restrictions and measures. Btw, will you get a 3rd dose of vaccine in the UK? Here in Sweden it seems that the cancer patient might not get it or not for another 6 months. I am considering trying to get in France instead, as I know that my immunity is not optimal as I got both doses during my chemo. 

Thank you for your kind offer. If I can train up to run a half marathon by March, I might take it and visit you in Cardiff.

Have fun at the parkrun on Saturday. I can't run the hills any longer either, it takes too much energy, so I walk them up and enjoy the run down instead. 

There are few fun races in Stockholm too in case you or the other ladies want to give it a try. There are two I particularly like because they are women only: Vårruset (5 km) and Tjejemilen (10 km). It is fun to run surrounded by up to 20 000 women, and they have categories from elite running to walk. I love to run side by side with ladies in their 80ies and mum with their kids in prams. It is more like a big party with collective warm up and picnic at the end (included if you register as a team).

Have a nice day

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@TicTok 

Fingers crossed for your MRI results today and for your blood values.

I hope that Boris and its descendants got the beaten of their life and reduced to nothing. 

Lots of hugs

Shi
Community Champion
Community Champion

Re: MAY 2021 CHEMOTHERAPY STARTERS

Thrush mouth common during chemo, usually fluconzole tablets clear it up ok ❤️👍hope it’s sorted soon 💕💕Shi xx

Cumbrian Lady
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Michelle21 

Yes, my oncologist actually said to me 'that chemo uses nasty, nasty drugs' but then cancer is a nasty, nasty disease.

Michelle21
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@gardengirl200 Yes I think thrush is quite common with chemo, hopefully the Gp will sort it out for you.

gardengirl200
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Michelle21 I did speak to my BC nurse and she thought it might be thrush as apparantly you can get that in your throat after chemo! who knew! But she said to go to the GP so he could take a proper look, so Ive made a GP appointment. I guess if that is all it is, I've got off lightly xx.  

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