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October 2020 Chemo Starters

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UmLydia
Member

Re: October 2020 Chemo Starters

Hello

Carmen that is great that your hair is growing back. My eye is still sticky too and I can't wear eye make up. I just wear one contact lense when i am fed up with my glasses and found out I can see ok... it's great you went out for dinner! Enjoy life as much as you can!!! 

My radiotherapy is OK, I got used to lying on the table half naked, nurses scribbling on my chest and having the machine move around... they are quite friendly, and the times revolve around my gym classes which is really nice of them... I have done 12 sessions have to do 25 in total. I don't have to hold my breath even though it is left side. It's not great you had to wait a whole hour! Mine are exactly on time it is impressive. We are in and out all day long.....

Chester brown bear that is sad feeling in limbo after treatment has finished. But it is so long and so intense i'm not surprised. I actually feel really at home in my hospital, it's like a cocoon where they make me better and I feel safe there. Will be strange not to go anymore and pick up my life professionally, back to running about non stop....

Hugs to everyone! 

 

chesterbrownbear
Member

Re: October 2020 Chemo Starters

Hi Carmen, yes how exciting but I’ve got those pesky chin whiskers, I didn’t miss those. I can’t wait to dye my hair must I must wait, especially as my psoriasis is quite bad in my head. I am on the Bosom Pals Support group on fb as they are based in Southend, and I’m not sure if anyone feels it yet but I just feel in limbo since radiotherapy and chemo has finished. A lot on that group feel the same and they have written to breast cancer now asking for scans as well as mammograms to ensure cancer doesn’t return elsewhere. They said they understand how we feel and they will pass our concerns on but there are no plans at present 🤷‍♀️. My next appointment with a breast cancer nurse isn’t until July. 
I feel so sad about your radiotherapy appointments, I was lucky, I got a time mostly 8.30 and I was in and out in about 15 mins. Good luck to you all 💪💪💕💕💕

Not a jockey
Member

Re: October 2020 Chemo Starters

Hi Carmen,

My eyelashes are growing back nicely but one eyebrow is barely there while the other is doing ok.  I am thrilled to have eyelashes again.  The hair on top of my head is getting thicker but is still more like fluff than hair.  Sadly the hairs on my chin have started to reappear - I was really hoping I'd seen the last of them.  My nails look like I've tunnelled out of a prison cell barehanded.  

Your radiotherapy sounds like hard work.  I wonder why that patient was crying - I'd find that a bit unnerving.  My sessions all fell within a two hour timeslot and were all around lunchtime.  I was at Addenbrookes and that's a busy place but I was only held up once.  I saw different staff and went into different rooms but it was ok.

Hope you managed to enjoy the good weather this weekend.  I sat in the garden with a good book.

NAJ xxx

Shi
Community Champion
Community Champion

Re: October 2020 Chemo Starters

😁😁😁👏👏👏eve brows and lashes returning 😍😍😍celebrate 😁😁 Renee to get the mascara on lashes as soon as you can it helps train the lashes to curl again, if you can get some of the mini mascara brushes they use when you trial a mascara in store, a tip from amazing lady on Ysl counter who showed me how to do lashes as they grew back and create the flase brows and lashes till they came back along with the you tube tutorials by a lady with alopecia hers were best tutorials on line I found at the time ❤️ don’t be tempted to shave chick fluff off your face, it does settle you just look a bit fluffy for a bit 👏👏👏just wanted to celebrate with you, it’s so exciting when hair starts to grow back ❤️💕💕Shi xx

Carmen Verandah
Member

Re: October 2020 Chemo Starters

Hi everyone 

Im replying to myself 😂 but I ‘m excited  to report that I now have some eyelashes, eyebrows, and hairs growing where they shouldn’t be on my face (moustache and chin whiskers😱).! Peach fuzz on my head, but totally Barbie doll smooth below the neck. My eye is still a bit sticky despite using antibiotic ointment.

 

My radiotherapy continues to be challenging as appointment times continue to be scheduled  between 8am and 18.40pm. I had to wait over an hour on Friday evening and wasn’t finished until gone almost 8pm, while listening to the patient in front of me crying and begging to stop. She was an inpatient and I felt very sorry for her. I’m having it at a big central London teaching hospital UCLH and they are just so busy it all feels very rushed. I’m in different rooms with different staff everyday and they don’t explain too much of what is happening. Last time I couldn’t hear them over the tannoy so wasn’t breath holding during at least one of the times the red ‘Radiation on’  light was shining, which freaked me out😱. But I’m 1/3 of the way through, I feel okay and my skin is fine. I’m using Flamigel which I bought myself as I saw it mentioned in the Radiotherapy forum. And the hospital is offering complementary  therapies in its cancer centre so Im booked for an aromatherapy massage on Tuesday morning. I even went our for a meal last week which felt very transgressive and daring. 

 

I hope everyone is doing okay, and enjoying the sunny weather.

 

Carmen 🌷x

 

 

 

 

Carmen Verandah
Member

Re: October 2020 Chemo Starters

Hi UmLydia

Sorry to hear about you are feeling about your appearance post treatment. I’ve had a swollen eye with a series of styles for a few weeks but finally went to the pharmacist who gave me chloramphenicol ointment. It’s really difficult to apply but is doing the trick, wish I’d gone sooner.

i think I try to surrpress all thoughts of recurrence. The radiologist started talking about survival rates which made me uncomfortable, but the consent form says the aim of the radiotherapy is curative. My mum (92) has had breast cancer twice, aged 60 and 71, lumpectomy and the mastecto,y, so I’m hanging on to that. But I do feel it has made me look at my priorities in life.

i started radiotherapy yesterday, my appointment times are mad, 11-30,  8.30, 1.30 and then 6pm on Friday! I got told off for stretching my arm as I got pins and needles, but it was okay otherwise, just all a bit odd. I wore some arm warmers ( the legs of a pair of woolly tights) as I was cold. The radiographers were nice, but it was in, out as they are so busy. The breath holding was okay. I couldn’t really relax though as settling into the hard bed would have meant moving again, which isn’t allowed. I tried to imagine the xrays zapping the bad cells instead. 

Big virtual hug

Carmen 🌞

UmLydia
Member

Re: October 2020 Chemo Starters

Hello 

Yes the allotment rules were in France not UK. The association created their own rules. It was an experience in growing vegetables and an experience in human nasty behaviour. 

Your course sounds good but such a pity it is online, more impersonal. The reason I like the exercise classes are: they make me feel good about myself afterwards and they happen in groups with real people!! The trainer is really funny and gives off great vibes. It's exactly what I need. I have probably never felt so vulnerable... at home with really ugly hair like a toilet brush, one scar on chest for a breast, gungy eye (not sure why it gets infected all the time) and being radiotherapied every day. I feel it drains me. 

I try to make the best of things and as NAJ says it's not worth living afraid. Some days I feel all euphoric that I am alive and others all drained. It's up and down. 

I never asked for my prognosis either. The fact I have a bit of chemotherapy added to HER 2 treatment obviously means it might come back. But they are throwing everything at it. I think it's like a lottery but with a horrible prize. 

Yes I suppose it is the nurse's job to explain. I just felt his attitude was caring and I appreciate small things these like that. I had already seen the radiologist for the official explanation before I started treatment, but she'd been colder and more technical. 

Hugs! Thanks for your messages

Carmen Verandah
Member

Re: October 2020 Chemo Starters

Hi NAJ

 

I did the I HOPE course online in February/March it was very useful, lots of good stuff like writing a letter to your body, setting goals, selfcare, mindfulness, thinking about the future etc. It has made me think about what I want from now on.  As it was online there are so many participants so I found it a bit difficult to feel safe to disclose too much personal stuff but the facilitators were really supportive. It would be much better to do it IRL but sadly not possible currently, however I am now FaceTiming a couple of women who have had breast cancer.

 

I’ve always wanted to do ballroom, especially the tango. I think keeping to being half a beat out throughout a whole dance sounds technically very sophisticated! Did you go for the full spray tan and sequins as well?  I did flamenco dancing for a while. All the stamping was very therapeutic and I loved the costume, (ruffled skirt, big earrings, flower behind the ear, a fan and scarf😊) , I was basically a show off, but not a born dancer sadly. 

 

Carmen 💃🏽

Not a jockey
Member

Re: October 2020 Chemo Starters

Hi Everyone,

Every few weeks I get a call from MacMillan to see how I'm getting on.  This week JP suggested the iHope course.  It sounds like it used to be done face to face in groups of about 12 but now it's online.  He's signed me up for the next one that starts on 19th April.  There are a range of topics and one of them is about the future and dealing with fears. 

I've never asked what stage my cancer was (though I'm sure it was stage 2) or what my prognosis is.  They've thrown everything at it that's for sure!  I know the tumour was grade 3 but I've just decided that I'm not dead yet so I'm going to get on with living my best life.  As they say in my favourite film (Strictly Ballroom) 'a life lived in fear is a life half-lived'.  Talking of ballroom dancing - Martin and I once attended classes.  We were absolutely hopeless.  If there had been a remedial class we'd have been in it.  He was always complaining I was 'half a beat out' (???) and when we waltzed or did the quick-step we used to lap other couples!  I was so glad when we got to the end of the year and we could give up.

Carmen I hope all goes well on Monday.  I thought I might have a bone scan to check for bone density but my oncologist said I didn't need one because of the Zoledronic acid.  I started Letrozole before radiotherapy.

UmLydia you've got through so much already - this is the last hurdle.  Eight weeks of rads is a long time but it will be done and dusted in time for the summer.  I'm impressed by the amount of exercise you're undertaking.  Makes me feel tired just thinking about it.  

NAJ xxx

 

Carmen Verandah
Member

Re: October 2020 Chemo Starters

Spoiler
Hi NAJ & UmLydia

Naj your allotment sounds wonderful. Such a sanctuary after what you’ve been through, apart from the weeding maybe. Mine was on the site of an orchard so there were lots of fruit trees, I had  a Victoria plum tree that one summer grew so many plums that the branches snapped. UmLydia are you describing French or English allotment regulations? Sounds very intimidating🙀.

So, NAJ my bone scan is a DEXA scan looking for bone density / osteoporosis, ordered by my oncologist before I start letrozole, or that is my understanding. It was to be today but the hospital rang yesterday to say the machine had broken down again. I didn’t know it had broken down before! I am having  zolendronic acid (biphosphonate) too. I was getting it confused with a bone scan which I had in the summer pre-surgery which was looking for metastases. Your oncologist doesn’t sound as if they have great interpersonal skills.

UmLydia, I felt tearful the minute I arrived for my radiotherapy assessment session. It wasn’t that it was kind of the nurse to explain what was happening to you, that’s their job! (I was a nurse). Maybe some people don’t want to know too much but we are supposed to give informed consent for any treatment we are having. 

I am sorry you are feeling so worried about the cancer coming back, I do too, but I think I try to suppress it and it’s probably better to face it and cry about the possibility. And half naked, with a chin strap and not really knowing what the hell is going on is an incredibly vulnerable position to be in, and would upset most people. You are doing an amazing exercise programme there but I guess you have to balance doing exercise, with being  tired and not overdo it, which I did  for a while.

I start 15 days of radiotherapy on Monday, and I’m going to hold off starting the letrozole till afterwards. The breath holding is to lift the breast clear of the heart and lungs so they are not irradiated too, but it depends on your particular anatomy as to whether you need to do it or not. I panicked initially but was able to hold my breath for 25 seconds. I think free divers learn to do it for minutes at a time! 

We just have to very kind to ourselves.B25BFB36-48B3-4198-BB55-040B44D9F3C8.jpeg

Carmen 🌞

UmLydia
Member

Re: October 2020 Chemo Starters

Hello Carmen you made me laugh again with the "dirty plot" letter!! I used to get letters with warnings, they used to stress me out more than work or children. They had a comitee patrolling the allotments it was like the weed Gestapo. I tried to do permaculture and covered raised beds with leaves (I went to fetch bags from the forest nearby). They absolutely hated that.   Naj's allotment sounds even more amazing and beautiful now with the daffodils. And enormous!! It's good you are allowed fruits trees. I would feel so proud if could grow vegs for two people. I had lots of raspberries and made jam for years that was great I loved it. 

My radiotherapy is on my left but I don't have to hold my breath. I will ask them why and about the dose. It will give me something to chat about. The first sessions I went in half naked and undignified, lay down and shut my eyes for 20 minutes.  It feels so impersonal. Yesterday the young nurse asked if I had any questions and i said well really i'm just following the protocol and don't understand how it works and he explained stuff. I thought that was very nice of him.  I started feeling tired again. I think it is the radiotherapy. We are back to killing cells. What are biphisphnates? Did you think you needed a scan for bone density Naj? Or for spread?

I also feel all tearful after the sessions. I worry about it coming back in a year or two or five. It's horrible. I realised I feel safe in my cancer hospital and the thought of going back to work or some kind of normal life seemed scary. That is so unlike me usually. I understand why they didn't want me rushing back to work as soon as radiotherapy finished. Plus will start hormone therapy at the end of radiotherapy. 

I'm so grateful for my keep fit classes. Monday and Friday it is muscle renforcement, Tuesday and Thursday walks with Nordic stick things, Thursday pilates, Wednesday day off. 

Tail Chi in the park sounds great and the zoom is better than nothing. NAJ if you are doing all that gardening you must be really fit and strong, all the digging and carrying.  Do you like going for walks? 

 

Not a jockey
Member

Re: October 2020 Chemo Starters

Hi Carmen,

I keep thinking I should do some sort of keep fit or exercising but I can't raise the enthusiasm for it. 

My allotment is a double sized plot so that keeps me busy.  I grow masses of soft fruits, lots of flowers for cutting and enough veg for two people.  On my plot I also have a mini orchard with seven fruit trees which is full of wild daffodils.  I plan to let that bit grow wild so I've put down some wildflower seed and will let the grass grow long.  The people who run the allotments have been very understanding over the past three years but the weeds never got to knee height which I think is the trigger for a letter.  It was my dad's allotment so it has been 'in the family' for over 50 years.  

It's three weeks since I finished my treatment.  I asked my oncologist if I would be having any kind of bone scan and she seemed astonished at my question and said I wouldn't need one because I am on bisphosphonates.  She then sent me a letter detailing my radiotherapy treatment which wasn't actually about me at all!  The radiotherapist took it off me because it was incorrect and I did get a different letter a few days later. 

I had to do the breath hold technique.  The website 'respire' is very informative and I practised every morning when I woke up so I was quite good at holding my breath for a count of 30 by the time I started treatment.  I never had to hold for longer than a count of 20 and usually only once each time.  I would spend the whole time trying to ignore the fact that my nose started itching the minute they'd got me into position.  They always took 2 CT scans first which they would examine before giving me the actual rays.

UmLydia - 40 sessions is an enormous amount.  Do you still get 40 greys of radiation like we do here or do you get a different amount?  I was bored to tears with going by the end but at least it wasn't painful and it was quick plus the hospital was only a 25 minute drive. The chin strap thing would have freaked me out.  I just had to lie still with my arms above my head.  The laser thing had a sort of mirror effect so it was either look at the ceiling tiles or look at my muffin top- I went for the ceiling tiles.

Good luck both of you.

NAJ xxx

Carmen Verandah
Member

Re: October 2020 Chemo Starters

Good luck with the keep fit Umlydia. I’ve been doing a weekly Zoom one to one keep fit with a MacMillan trainer from Spurs Football Community outreach, arranged by the hospital.  I thought it would be a bit intense but in fact it’s been fine,  I just have two more to go. The trainer is seven months pregnant so it’s not been too demanding, but it’s taught me some good stretches and exercises.

I’ve just been called for yet another covid test before my radiotherapy, and have  a DEXA bone scan too. I think it’s looking for signs of osteoporosis but I’ve lost track frankly.

Today I did tai chi in the park which I love, it was sunny but very cold.

I used to get something very humiliating called a ‘dirty plot’ letter, no kidding,  when I let the weeds grow too much on my allotment! But I still miss it at times, but ideally the allotment  needs to be within walking distance of home and mine wasn’t.

 

Hope radiotherapy goes well, I don’t have a chin strap luckily but will have to breath hold a bit as it’s the left side. Mine starts next week. It will be over by the end of the month, just about a year since I found my lump!

 

Carmen 🎈 

UmLydia
Member

Re: October 2020 Chemo Starters

Ha ha that's so true Carmen, lying down with my chin strapped to the bed (they made a kind of chin plaster and use it to immobilse my head) and a mutilated scar and floppy breast on display is so not relaxing!!! The undignified things we have to go through! 

I have arranged to stay at my inlaws a couple of times a week because they live close to my hospital (I have an hour's drive). Since the kids are off school due to lockdown they will come with me. See how that works out. At the moment they haven't cancelled the keep fit classes at the hospital so I will be doing as many as possible. My husband and inlaws will have to take care of kids.... The kids will be off school for at least 3 weeks. I have been looking forward to being able to go to these keep fit classes for months. 

NAJ your allotment sounds amazing! I had one for about 3 years and I loved it but I was rubbish at it and the kids were tiny and i always went away too long in the summer holidays so in the end I got kicked out for having too many weeds. But it is one of the best things to do, I think, grow your own food. 

We saw inlaws illegally today for Easter eggs, I got some "oh hasn't your hair grown back yet" comments. Well no, if i'm wearing a bloody headscarf it's because my hair looks like a concentration camp victim. It's so slow!!!! But I definetely feel I have got my energy back after chemo. Not looking forward to starting hormone therapy but that is why I want to get into the habit of keeping fit, I think it's the best way to deal with side effects. 

Hugs to everyone. Hope you having nice Easter weekend.

chesterbrownbear
Member

Re: October 2020 Chemo Starters

Dear NAJ, I’m so pleased you are looking on the bright side and taking an interest in your hobbies, you have been through so much. I don’t know what I would have done without my Labrador Bella, I’ve cursed her when I have had to walk her, but I’m sure it did me good, I chat to her all the time and she understands what I’ve been through 😀. I don’t think my toe nails have much longer to go, they a rocking in the nail bed 😬, but been through worse.

Happy Easter to you all and stay strong 💪💪💕💕💕💕💕

Carmen Verandah
Member

Re: October 2020 Chemo Starters

Hi NAJ

Great to hear about your hair and lashes coming back, mine is just starting, but not at the nape of my neck or the very front, more at at the sides, and mostly white. Like you I hope it will all join up at some stage. The eyebrow sounds a bit challenging. Sometimes I draw eyebrows on with a brow pencil but never very successfully, however they are supposed to be sisters, not twins,  I read somewhere. The best thing that happened to me  was that someone thought my new wig was my real hair, and was surprised it had grown back so quickly, which is great because I was feel self-conscious wearing it. Am clearly far too vain, ‘nobody is looking’ I have to remind myself.  My nails are still yellow/purple and gnarly, but slowly normal pink nails are growing.

 

Great to hear about the trips you have planned and your flourishing allotment. I had an allotment when my boys were younger, however it had a lot of mares tail, a prehistoric plant with deep, spreading roots. I did enjoy therapeutic digging but was not particularly successful at cultivating any useful crops, apart from courgettes, runner beans, plums from a tree that was there already, and potatoes. And then would have far too many  of them for a short period!  But it was lovely place to go and the other allotment holders were very friendly and very free with their conflicting advice🤷🏼‍♀️!

I am sure you are missing your dog so much, it must be really tough.

Happy Easter

Carmen🐣

Carmen Verandah
Member

Re: October 2020 Chemo Starters

Hi Mandy

When the radiotherapy doctor rang me to explain it all and get my consent, she said the effects of the radiotherapy can last up to 4 weeks after the active treatment stops so hopefully you should start to feel better soon. 

My radiotherapy is being done at a different hospital to where I had the surgery and chemotherapy. However I have had a few post chemo issues and the breast care nurse at the original hospital is very good and she is the one I go to for help, so I hope it will be the same for you. You should definitely ring them if you are still in pain.

Thanks for the encouragement about the radiotherapy 😊. I worked out that when mine finishes it will be just under a year since I first found my lump. The 6 months of being poisoned was definitely the worst part so thank heavens that is now over. I just want to get the radiotherapy over with now,  pert or not! Althougth here is still 10 years of letrozole ahead.....

Happy Easter and good luck, 

 

Carmen 🐣

 

 

 

 

Carmen Verandah
Member

Re: October 2020 Chemo Starters

Hi Michelle

I am so sorry to read that you have been through chemotherapy and radiotherapy before, that’s really tough. Thanks for the info about the possible effects of radiotherapy. At my planning session I had to practice holding my breath, which in fact I am able to do, however it’s quite difficult to take a relaxing deep breath with both breasts on display, and being marked up with various coloured pens, in a room full of people!

 

Wishing you all the best going forward.

Carmen 🐣

Not a jockey
Member

Re: October 2020 Chemo Starters

Hi Mandy,

I finished rads two weeks ago.  Compared to chemo it was a doddle.  My skin has been fine apart from an area right at the centre of my chest where I caught the sun gardening and that has been itchy.  I had a mastectomy so no 'pertness' to report but I also used to sleep on my front and it's still too painful for that - my ribs feel a bit tender and where I had my surgery some breast tissue was left behind so I'm not flat and that hurts if I lie on it.

I've been taking Letrozole for around six weeks now.  First batch was Accor and now I'm on a generic brand.  At times I feel slightly nauseous but other than that nothing to report.

My eyelashes are growing back nicely - hurray!!!!  However, only one eyebrow is growing back so I'm soon going to look like I got drunk and someone shaved one off for a joke.  My hair is growing back steadily, straight and grey like it was before.  It's fullest at the sides so I'm hoping it will eventually join up at the top of my head.  There is a strange bald patch about the size of a 50p on the side of my head but I'm hoping that will go too.  All of my finger nails have peeled off and look terribly ragged but over time the new nails will grow long enough to be smoothed and shaped.  I suppose it's all progress at last.

Looking forward I've booked three short breaks, two camping with my foster child and one staying in a swish hotel with the bikers.  My allotment now looks like it belongs to someone as I am going there every day and weeding and we've started talking about getting another dog.  It's still a bit soon for me but it's important to James that we have a dog (or at least the promise of one).

Hope that everyone has a good Easter and is feeling well enough to indulge in some chocolate.

NAJ xxx

chesterbrownbear
Member

Re: October 2020 Chemo Starters

Hi Carmen, yes I’m 61 and I was large breasted which I always hated. Now since radiotherapy the breast I had a lumpectomy etc is a great size and yes pert. I wish the good one was the way but that won’t happen. I must say though, I often used to sleep on my front, and I did the other night, and it was still painful and all that day I got shooting pains. I wonder if that’s normal and I’m still healing?  I finished radiotherapy 3 weeks ago, and not heard a thing from the hospital, I do feel as though I’ve been dumped.  I want to ask questions about the pain and about the Letrozole.  Anyway if I don’t hear soon I’ll ring the breast care nurses.

Carmen, radiotherapy is a walk in the park compared to chemo, I hope it all goes well.

I hope everyone has a lovely Easter.

Mandy 💕💕💪💪💪

Michelle21
Member

Re: October 2020 Chemo Starters

Hi Carmen

thanks for replying to my questions. Ultimately I guess everyone is different and therefore reacts differently. I’ve had chemo before but a different regime and was lucky then and fared well with good results, I will hope for the same this time. 
Re radiotherapy I have had that before too on my right side. My skin did break down, although I had 20 sessions and I think by that time I got fed up with showing everyone my breasts every day. For a few months after radiotherapy my breast felt very firm and I also joked it was ‘pert’. It is 2 1/2 years since I had rads and it is still more pert than the other side but not as hard as it was. 
My left side obviously didn’t want to be left out because now I have to go through it all again. 
Most people I know who had rads in 2018 found it more than ok.
I hope it goes well for you and that your neuropathy goes away soon xx

Carmen Verandah
Member

Re: October 2020 Chemo Starters

Me again, radiotherapy query this time!

I’m starting 15 days radiotherapy on Thursday, and I remember being told the radiotherapy might change the shape and size of my breast. The doctor used the word ‘pert’ which made me smile as at 64 and after breastfeeding 3 children, it’s been a long time since my breasts could have been described as pert, if they ever were. 

Has as anyone noticed any breast changes after radiotherapy? 

Thanks

Carmen 🌞

Carmen Verandah
Member

Re: October 2020 Chemo Starters

Hi Michelle 

 

I had 4 x EC followed by 12 weekly doses of paclitaxol. I tolerated them pretty well, but stopped after 11 doses of the taxol as I had peripheral neuropathy which I still have, but it’s only been 5 weeks since my last dose. My bloods were pretty much within normal limits throughout luckily.

 

In another forum, someone commented that we only post about our issues so we don’t hear from those that aren’t badly effected by different treatments,  so we’ve get a distorted idea of how people fare overall. When you read about every possible chemo side effect, which I guess legally we have to be informed of, its enough to make you run for the hills I know. I was very reluctant to have chemo and it’s been a long haul, but it helped me to think that if it was doing this much damage to my hair, nails and nerves , it was destroying the cancer cells too, although my hair, nails and nerves will recover.

 

Wishing you the best of luck with your treatment going forward.

Carmen 🌻

 

 

Michelle21
Member

Re: October 2020 Chemo Starters

Thanks Jo, I will let you know how I get on,  I hope everything else runs smoothly for you xxx

Jojo1447
Member

Re: October 2020 Chemo Starters

Morning

it would be around 8 I think.  I ended up missing 3 altogether but they allow for problems apparently.

week after chemo ended I started with the tingles and numbness in fingers and toes but that is getting better now chemos stopped but just keep an eye out for it.

let us know how you get on.  Good luck

 

Jo x

Michelle21
Member

Re: October 2020 Chemo Starters

Thanks for the reply Jo it’s really helpful. Did you end up having 8 or 11 taxol before your bloods played up? I have been warned a blood transfusion is likely on the carboplatin. 
Good luck for your op, I’ve had a lumpectomy on my other side and it was fine and fairly quick recovery. 
Michelle x

Jojo1447
Member

Re: October 2020 Chemo Starters

Hi Michelle

I started on EC for 3 cycles then moved onto Carbo every 3 weeks and taxol weekly.

To be fair i think I've come off lightly o the chemo front when i hear of some of the groups horror stories.

I've finished chemo 3 weeks ago and only side effects i suffered were 2 days of fatigue where i couldn't get out of bed t the beginning of EC.

Towards the end my bloods started acting up delaying a treatment and the last one was cancelled as i was anaemic and they did a blood transfusion.

I now have op date set for 16/4 which i am a little apprehensive about but looking at it as next stage to recovery.

 

Hope it goes well for you

 

Jo x

UmLydia
Member

Re: October 2020 Chemo Starters

Hello Mrs Mcquincey, congratulations on finishing chemo at last!! You are so young... I hope your immediate reconstruction goes well. It's good you have that option, my oncologist said I couldn't have immediate reconstruction due to radiotherapy and survival chances. At 43 I think it is still relatively young to go flat but I am dealing with it ok, not much choice really. You have a beautiful family. 

 

NAJ I am so sorry about your dog. The end of the treatment is an anticlimax I agree, you need lots more time to recover. That is really terrible for your mother in law. I am so sorry. 

York 75 that's great you have hair. Mine isn't growing back properly yet, have bald patches at the front and to my utter horror it seems to be growing back mostly white. Oh my God. The kids say I look like grandad. Getting a tiny bit fed up of my headscarves but there are worst things. 

Start radiotherapy on Friday. 

Hugs to everyone

Carmen Verandah
Member

Re: October 2020 Chemo Starters

Good luck for your scan results Mrs Q. It’s so hard waiting for the results, someone in another forum call is ‘scanxiety’ which sums it up. I am sorry you are going through all this when you are so young.  It’s a big surgery but it sounds very well planned.

Take care, Carmen x 🌞

Carmen Verandah
Member

Re: October 2020 Chemo Starters

Dear NAJ

So sorry to hear about your mother in law’s prognosis, and that you have lost your dog as well. That’s just too much for you to cope with on top of everything else.

As to finishing treatment, I’ve still got my 3 weeks of radiotherapy, but great that your’s is behind you now.  I really liked my surgeon and she always makes a point of talking to me if she sees me in the clinic, but I feel that sadly there is a relentless conveyor belt of newly diagnosed women behind me, and I am just one of so many the team has to care for. But at the same time I want to feel special, and treasured! I’m waiting for the breast care nurse to get back to me about my swollen arms, feet and now, weirdly, eyes. She said she would ask the oncologist again,  so I am in no-mans land between shall I wait to hear from her or shall I ask the GP? Telephone consults just aren’t the same as face to face.

Take it easy as you recuperate and convalesce, sending you healing thoughts. It’s supposed

to be lovely weather for a few days, 

Carmen x

 

0CD69929-B7E1-4DBB-BFBE-0DF3FF7C97C3.jpeg1D994FDE-0EF6-44CE-8BF7-04C958A4B871.jpeg

 

Michelle21
Member

Re: October 2020 Chemo Starters

Hi I was wondering if anyone in this group is Triple Negative and has had carboplatin as part of their treatment? I have just been diagnosed and hope to start chemo soon and would like to know how you got on with it. 
thanks 

Michelle x

Not a jockey
Member

Re: October 2020 Chemo Starters

Firstly well done Mrs Quincey on getting this far.  I hope your MRI is good and your surgery trouble free.

Approaching the end of treatment I didn't really know how I felt about it soon being over.  It was a bit of an anti-climax really.  I suppose it wasn't helped by having to have my lovely dog put down on Friday and then getting a call from my mother-in-law on Saturday to tell me she was terminally ill. 

My last radiotherapy session was on Tuesday this week and the next thing is a telephone consult with the oncology nurse in June and an appointment with the breast unit in August.  While I feel relieved that treatment is over I'm scared about the future.  Hopefully I will grow more confident as time passes.

Love to everyone 

NAJ xxx

 

mrsquincey
Member

Re: October 2020 Chemo Starters

Thank you both.

I will be having a mri on the 12th to see my response to chemo (fingers crossed the best result).

I will be having hopefully a uplift and reduction in my good breast as my boobs are huge. And on my bad boob a masectomy due to dcis also and a immediate implant.

 

But we shall see. Im obviously young and mentally i feel like i couldnt deal with being flat. 

Carmen Verandah
Member

Re: October 2020 Chemo Starters

Well done Mrs Quincy, that’s an important milestone! Good luck for you surgery and make sure your lovely family indulge you while you recover from the chemo 😊.

York-75
Member

Re: October 2020 Chemo Starters

Fabulous news that you have finished chemo, mrs Quincey!

That is such a milestone, I hope you are feeling relieved, happy and not too exhausted and broken. I kind of swung between the two for a bit.

I hope surgery goes well, what are you having? I had a lumpectomy and it was much easier than chemo.

My last chemo was 16th December and I have been able to go without a hat or wig for about 3 weeks now. Very short, but it is hair! 
lots of love to you, and the rest of our October crew. 

mrsquincey
Member

Re: October 2020 Chemo Starters

I feel like im the last to say this out of our group. But yesterday i completed all my 8 rounds of chemo. I still habe surgery to come but i am so relieved. I will also be having herceptin and prejeta till dec but will be having it via the ohesgo injection that will only take 10 mins, meaning i also got my picc line out yday wooohoo. My children and husband were able to see me ring the bell and brought me lovrly balloons and flowers. It was also my 34th birthday and the

IMG_20210323_184421_461.jpg

sun was shining what felt just for me. Im so proud of myself and my family. 

Carmen Verandah
Member

Re: October 2020 Chemo Starters

Thanks for the article Umlydia, it is really helpful to think about how to look after ourselves and allow ourselves time to regain our strength and how to deal with the future. 

I do feel time slipping away as it has been such a strange year. But it was my 64th birthday yesterday and by this time next year I plan to have moved from north London to the south coast, and to have found myself a new man, (although the prospect of internet dating fills me with terror as I met my ex when I was 19)! I left my partner of 42 years, two years ago as we weren’t happy, and it has been very traumatic getting him to agree to sell our house, which took the threat of court action to finally achieve, and frankly he put me through hell, then there was covid, and then breast cancer! But as you say NAJ I don’t find it helpful to be told how brave I am,  I didn’t have any choice except to keep putting one foot in front of the other. I guess people just don’t know what to say. I don’t feel brave, I remember vividly that when I lay down on the operating table dressed in a back opening hospital gown, oversized paper knickers and attractive white stockings, with marker pen all over my left breast, I just thought to myself I can’t do this and wanted to leg it out of the operating theatre as fast as possible, but it was too late, as I already had a blood pressure monitor clamped to my leg.

NAJ I hope you can rearrange your trip to Russia. I went to St Petersburg in 2001, with my mum, as it was where my grandmother was born in 1903, and it was amazing. It was June so it hardly got dark, and we had wonderful weather. My only holiday plans so far this year are to spend a week in a caravan in West Wittering in July with two old friends, I can’t wait. I’ve also been lucky to have some really supportive friends who have helped me so much over the last few years.

Hope everyone is doing okay and taking good care of themselves.

 

Carmen 🌞👍🏼🌷

 

 

Not a jockey
Member

Re: October 2020 Chemo Starters

Hi UmLydia

That's a really useful article.  I felt like I'd read a passage of it somewhere before but it was certainly worth reading the whole thing.  I've printed it out so I can read it again from time to time to remind myself that what I'm feeling is 'normal'.  

The worst thing anyone asked me was 'what's your prognosis?'  I also found it a bit difficult when people so blithely said things like 'oh that's very curable these days' like it was an ingrown toenail I was suffering from rather than something that would kill me if it wasn't treated and was scaring me ****less.  I'm upset that a friend I saw every weekend has not been in touch at all since I told her of my diagnosis.  I've also found it irritating when people said 'you're so brave'.  I'm not brave I just didn't feel there was any choice but to go through the treatment.

On the plus side the friends who have been supporting me with phone calls and emails have been amazing, especially my best friend who came with me for the diagnosis and then took me to every chemo, staying overnight for a couple of nights to make sure I was ok, and then moved in to look after James when I was in hospital.  When I count my blessings I count her twice.

Hoping everyone still going through treatment and those who've reached the finishing line are doing as well as they can.  Three more radio sessions to go for me. 🙂 

NAJ xxx

UmLydia
Member

Re: October 2020 Chemo Starters

Here is the article. 

https://www.workingwithcancer.co.uk/wp-content/uploads/2013/03/After-the-treatment-finishes-then-wha...

 

Link doesn't work but google:

after the treatment finishes then what Peter Harvey

 

UmLydia
Member

Re: October 2020 Chemo Starters

Hello everyone

So sorry about your psoriasis Mandy. So unfair to have to put up with it  after all of this. I really hope it calms down soon. My mum gets it badly on her back and legs. People who say great you've finished all your treatment have no idea. They might be well intentioned. But they have no idea. My cancer doctor said at my first appointment to discuss treatment: often the most difficult part is the "afterwards". I was confused by what he meant. He meant when the treatment has finished. He said people can struggle after treatment to get back to normal. I read a really good article by a psychologist about it, will post it if I can find it again. 

Carmen thanks for your advice about tattoos. They are not really my thing but some of them are quite pretty. I am finding the masectomy the most challenging part of my treatment, much more than chemo. The roller coaster cliché is so true. I feel fragile and stronger at the same time. Do you feel ready to go back to work? My doctors say we need a couple of months after treatment finishes to recover before going back to work, and then they prefere if it is part time at the beginning. I teach and won't be going back until September. From the beginning of treatment they said i would need a year off . I definetely feel I am getting my energy back now but sometimes have slumps. 

Linda thanks for the photo... it looks very sore. Goodness so much to put up with. Hope it has calmed down. I have appointment tomorrow for the tattoos. They are going to zap lymph nodes in the throat as well as frankenchest. 

It's so funny now we have all discovered we need to live in the present and have amazing adventures everything is banned 😅😅😅😅. Tough luck!!! 

I certainly agree no time like the present. I think I already knew that but will appreciate it even more. And maybe put myself first sometimes. When I was diagnosed the only thing in thought was I need to live for my children. But now I think I need to live for me as well. 

Big hugs to everyone!!! 

Not a jockey
Member

Re: October 2020 Chemo Starters

Hi Linda,

I completely agree with you that life is for living.  It's all too easy to keep putting things off assuming there will be time in the future.  Martin and I had so many plans for when we retired from fostering but he died at just 58 years old. I'm lucky that I have a foster child who is always up for an adventure, a best friend who likes to visit new places (especially if there are gardens) and a daughter who is a fabulous travel companion.  I was 60 last year and my daughter was 30.  We had a bespoke trip to Moscow and St Petersburg planned for last April but that was cancelled due to covid.  Maybe next year....  

On the adventure front my foster child persuaded me to take him on a flight in a bi-plane a couple of years ago.  It was as old as my dad and made from wood and painted linen.  I've never been so frightened in my whole life.  At one point the man in the seat next to me took a photo using flash and I thought there had been an explosion and that we were about to drop from the sky like a stone.  I don't know how I didn't scream and I'm still traumatised by the memory 😂.  James' birthday is next month and this year he's decided he wants to take a trip in a helicopter.  Think I'll feel a bit safer in that.  Let's hope he never wants to do a sky dive or a bungee jump.  

Good luck with convincing your husband.  There's no need to feel guilty at being a bit selfish every now and again - I think we've earned it.

NAJ xxx

linflo58
Member

Re: October 2020 Chemo Starters

Mandy

Sorry to hear about your psoriasis., it’s so unfair when you have already gone through so much. I think people are trying to cheer us up when they want to celebrate the end of our treatment. I don’t feel like it’s the end as I felt worse 2 weeks after my treatment ended, and still have Herceptin drugs every 3 weeks for a year. I know we are extremely grateful for the treatments as without them we wouldn’t be here. It doesn’t stop us from having the odd day of self pity. I’ve decided that once I am ‘well’ the grass will not grow under my feet, life is for living- just need to convince my husband! I had cancer 4 years ago & must admit my life reverted back to its normal routine because I was happy with my life as it was. Now I think “what if it comes back again in another 4 years?”. Also covid has made me realise how we always assumed we could do what we wanted: family get togethers, weekends away, holidays abroad, nice meal out with friends, but now there are no guarantees anymore. But, we have to differentiate between doing something because we genuinely want to do it, or that we feel we should do it. That will be my biggest issue. 

Sorry for such a deep post on a Sunday evening.

Hope all mums have been spoilt and had a lovely day xxxx

Linda

Not a jockey
Member

Re: October 2020 Chemo Starters

That looks REALLY sore. 

I've had eight sessions now and while my skin hasn't reddened yet it's a bit tender at the side of my ribcage.

Oh well ....

I've only got one telephone appointment during radiotherapy to check how it's going and that's on the day of session 11 - I'm not even sure who's calling me.

NAJ xxx

 

 

 

Carmen Verandah
Member

Re: October 2020 Chemo Starters

Linda, that looks quite sore and not what I was expecting, but good to be prepared, thanks for uploading the photo.

Mandy sorry to hear about you’re psoriasis, my son has it and I know what a problem it can be. I know what you mean about everything thinking we should be ‘back to normal’ when it feels far from it. Today Ive got a big stye in my eye and my forearms and ankles are as swollen as ever 😕

But I’m distracting myself with the idea of a tattoo.  Umlydia I should have said they are for women who don’t have have reconstruction too. 🙂

AA77A1D7-43EE-4B69-BA03-CB7594B805BE.jpeg511B5648-1FF7-4D8A-92D1-DE285DF47359.jpeg

chesterbrownbear
Member

Re: October 2020 Chemo Starters

Linflo58 you poor thing, I know exactly how you feel. My psoriasis has been ok for for a number of years now, it’s been up and down since I was 16 ( I’m now 61 😬). I finished radiotherapy on Monday, but 3 weeks after I finished chemotherapy, my psoriasis started to come back aggressively. Now 3 weeks later it’s so bad and it’s everywhere, even on my face ( which hasn’t happened before). The thing is people around me say ‘great you’ve finished all your treatment, now you can get back to normal’ but I’m in so much pain and feel so low. I know this will go away with time, but it’s such a blow to my self esteem. It makes you wonder what’s next. I’m not usually so pessimistic, but ..... 

Mandy xxx

 

linflo58
Member

Re: October 2020 Chemo Starters

Carmen

That must be a blow for you as you had it all planned. The actual 15 sessions were fine but it was about a week after treatment ended that it became uncomfortable for me. You may be lucky, you never know. I certainly could not wear restrictive clothing, have lived in cotton pyjama tops for the last 2 weeks. This was me one week after the last treatment. Apparently this was normal, so I shouldn’t worry, which I felt better about. Just have to be patient. It looks swollen but isn’t. I have always had a ‘pigeon chest’ which looks a lot more prominent without my boob underneath it 😀

linflo58_0-1615558180403.jpeg

Linda xx

Carmen Verandah
Member

Re: October 2020 Chemo Starters

Moira is an inspiration 😊! But I don’t quite have her chutzpah.

Carmen Verandah
Member

Re: October 2020 Chemo Starters

Hi everyone

I was feeling quite smug that I only needed 5 doses of radiotherapy but yesterday  I found out I will need 15 as, like you Linda,  I need to be zapped in 3 areas. I’m a bit disappointed as I was going to stay with a friend who lives within walking distance of the hospital for the week, and I can’t expect her to bubble with me for 3 weeks, although I’m a bit confused about coming out of lockdown and what we will and won’t be able to do. I should have my planning session within the next 2 weeks and then hopefully start the treatment by mid April, but the doctor said the radiotherapy continues to work for several weeks after the treatment, so I might experience skin problems and fatigue for a month after. But maybe not. I was hoping to go back to work in May but I guess it may have to be June now. I work part time as a registrar of weddings and civil partnerships which I really enjoy and for which I have to try and look uncharacteristically smart, i.e. suit, heels and a bit of slap😊, which is not my usual look. So I’ve ordered a short, white blonde wig like my normal, or should I say dyed, hair and am hoping for some eyelash and brow regrowth. A friend bought me some serums and what with trying to remember to apply those twice a day and rosemary and jojoba oil to my scalp, it’s almost as busy as taking all those drugs with the chemo.

NAJ you make me laugh with your make up exploits 😆.

Love to everyone 

Carmen 👩🏻‍🦲

Carmen Verandah
Member

Re: October 2020 Chemo Starters

Hi Umlydia

It’s great that the cancer is gone from your lymph nodes but I’m really sorry to hear you need more chemo and that you are feeling traumatised about your mastectomy scar. So tough. I guess the appearance of the scar will change over time but it’s very hard coming to terms with it. I’ve been looking into post breast surgery tattoos, from realistic 3D effect nipples to much larger tattoos.  I think some that I have seen are really beautiful. There are lots on Instagram, and this website and the American website Breast Cancer.org have lots of info about it.

I think I might go for it, but you have to wait at least a year after all treatment is over I think, by which time I will be 65 but hey, why not?

 

This was in The Guardian.

Big hug

Carmen x0CA41D66-E9F2-404F-9AA3-445403BF7719.jpeg

linflo58
Member

Re: October 2020 Chemo Starters

NAJ

I thought I had sailed through radiotherapy, after about 8 sessions I noticed a couple of spots. At my review meeting ( I had 2 of those during the treatment), the nurse gave me some hydrocortisone cream to put on. I was fine, but at the end of treatment they stressed quite a few times that it may get worse up to 2 weeks after. They were right! After about a week I had a very red & angry triangle area on my chest. It didn’t hurt, just itchy & very uncomfortable. I have not worn a bra & wore loose cotton clothing ( not a good look 🙄). I have used a full tub of E45 cream, which feels so good when you put it on. It is now 2 weeks since my last treatment & I can see an improvement. I had 15 sessions & was targeted in 3 areas as my lymph nodes were affected. They do say it can make you feel tired. I haven’t noticed an6 difference, but I think our bodies get used to feeling this way, it is now the norm.

Hope it goes well for you.

Linda xxx