October 2020 Chemo Starters

[UmLydia]

Hello everyone 

Carmen your new home looks so lovely. So happy for you. Will you take part in the aspirin trial? 

Chesterbrownbear i hope your oncologist can help with the Letrozole side effects. I am on Tamoxifen. I felt fine for the first six weeks. Suddenly i have been feeling tired and achy in my legs. Seemed too good to be true to have no side effects... will try to keep up with regular exercise i am sure that will help. 

I am so happy next week the kids and my partner will be on holiday and we will spend summer in Spain, which is where i grew up. I booked a week away with just my partner, leaving the children with my mum. Indulgence i feel is well deserved. We are going to Naples!! Exciting. 

I had to have a mammogram last Thursday because i felt a small bump on my right breast. Was worried it was going to mess up my summer plans. Luckily just a cyst. 

Hope everyone has plans for a great summer after a very strange covid/cancer year. We deserve to indulge as much as we possibly can!!!

I am still wearing my headscarves i don't like how i look with very short hair. Will give it  a few more weeks.... ar least it is growing nice and thick.  I find it harder adapting to new short hair reality than i did actually losing my hair. 

Will go back to work part time in September. 

Hugs to eveyone. 

[chesterbrownbear]

Hi Carmen, what a wonderful view, I bet you can’t wait to move. New start wonderful. So pleased to hear you are getting on well with Letrozole, I must admit I am struggling a bit. My knees and shoulder can sometimes be really painful and my thighs ache and make me feel so tired, and my stomach is like a gurgling washing machine🤷‍♀️. I’ve been having a few reflexology sessions through McMillan, and they have been lovely. Last Monday they emailed my oncologist and breast nurse with details of my symptoms and when they didn’t hear anything they rang the oncologists secretary. By magic I have n appointment with my oncologist at his hormone clinic this Friday. I’ve never me the man, only spoken to him twice. Fingers crossed we can work something out.

hope everyone is progressing well

mandy xx💕💕

[Carmen Verandah]

The view from my new house 😊

[Carmen Verandah]

Hi everyone, I miss the  regular posts from everyone but I guess we are moving on, which is good.  Sounds like you had a good time on your travels NAJ. I’m buying my house in Bexhill Old Town and I’ve met my immediate neighbour who is lovely, and hope to complete by the end of the month. It seems a bit unreal and the removal people can’t move me till 9th July. It’s exciting but a bit daunting. I had a call from the radiotherapy oncologist which was very brief and obviously just a formality as I never met a radiotherapy doctor. I actually saw my oncologist last week who has recruited me to a trial to see whether taking aspirin can reduce the recurrence if breast, prostate, and gastronomic intestinal cancer. I have to take a tablet for 5 years which could be a low or higher dose of aspirin or a placebo. I also have too much calcium in my blood which could mean I have overactive parathyroid glands, which will have to be removed, but I am hoping it will settle down by itself and I’m trying not to think about it. I went back to the chemo unit for my second zolendronic acid infusion which was fine and it was nice to see the nurses again. I’m tolerating the letrozole well so far and actually halve fewer and milder hot flushes so far. My hair is almost long enough to ditch the wig, maybe in a month or so, and I’m back starting back at work part time. So that’s me. My son asked me how I was  feeling now. I’m okay and no longer tired and my eyes lids have finally stopped being red, swollen and sticky (hurray) but maybe I feel a bit sad and lonely even though I’ve got lots of friends. They say I’m looking so well but I guess we’ve been through a lot and it’s taken it’s toll. Onwards and upwards 🌞.

Carmen x

[Guest user]

Well, half term was lovely.  The weather was fab for camping and I managed to put the awning up with just James so that's a little bit of progress.  I'm getting better at pacing myself.  

The bikers trip of Dartmoor and Exmoor was great and I shamelessly played the cancer card at the hotel to have steak and chips for dinner as I didn't fancy any of the meals on the set menu.  I offered to pay the extra but they didn't charge me and they even gave me a room with a four poster bed.

It's been a busy week, I had my blood test and chest x-ray but they tell me the x-ray results won't be available for about seven days.  I need another blood test ahead of my bisphosphonate injection so I will need to plan that in as it takes so long to get an appointment.

A few days away and the allotment is knee deep in weeds but I had my first strawberry today - James had the real 'first' strawberry yesterday.  We're camping again tomorrow in one of Suffolk's prettiest villages so I'm hoping the weather stays dry.

I hope that everyone is keeping well.  We must all be coming towards the anniversary of our diagnosis - don't think I'll be celebrating that but I am planning to take a group of my friends out for lunch to thank them for their support.  

Take care everyone

NAJ xxx

[UmLydia]

Hi NAJ you made me smile with your card. Good to hear you feeling better. Sounds like great fun with the bikers and the camping. 

You know all the water carrying and weeding is improving your chances of survival. The more active we are the less chances of it coming back. They say that anyway. 

Had a busy day. Saw my oncologist. She said when I finish targeted therapy in November  for HER2 they might put me on  a newly approved drug to continue HER 2 treatment (a pill a day on top of Tamoxifen). I asked if she knew what chances I had of recurrence. She said between 10 and 20%. She said VERY brightly that if I have any worrying symptoms they will do a PET scan. 

Then I saw my surgeon. Chuffed because I have a prescription for a silicone prothesis. See how it goes on the beach this summer. At least I will get to a beach. I need to get a masectomy bikini when I go to get the prothesis. 

I can't believe my brain is capable of feeling pleased to replace a foam breast with a silicone breast prothesis. 

We already had half term here but it coincided with radiotherapy so I didn't do anything. Looking forward to summer holidays now!! 

Chesterbrownbear I agree people think we are fine because we look ok. The doctors know it is tough for us and we put brave faces on. It takes time to get back to how we were. If we ever do. Not sure for me. Going to try and enjoy the summer cos I'm supposed to start work in September. 

[chesterbrownbear]

Dear NJA, so glad you are feeling a little better it is really tough after treatment. I find that a lot of people think you look well so everything is ok 🤷‍♀️. I’m in sunny Essex trying to catch up with a bit of gardening, we have 3/4 acres so you can’t let the grass grow under your feet. My husband is a nightmare in the garden, he will cut the grass if I can’t but I prefer to do it when able. My son now lives in Devon on the Two Moors Way, between Dartmoor and Exmoor, it’s a beautiful area. He has just started a business with a couple of self contained properties from a barn conversion, best time to start a holiday business.

hope you all are having a lovely sunny bank holiday.

Mandy 💪💪💕💕

[Guest user]

Hi Everyone,

The breathlessness is starting to ease off - it's not happening so often now.  It was reassuring seeing the doctor and being told my heart and lungs were fine.  It's a real issue isn't it - there are so many side-effects to the treatment we've had and the hormones we're now taking how do you know if you're really ill?  Sadly here in West Suffolk you have to wait around 10 days for an appointment for a blood test or a chest x-ray (by which time you could be dead).  I've got those the 7th and 8th of June.

The weather here is fabulous and I spent the morning on the allotment weeding and watering.  I do have to rest a bit more often because lugging watering cans around is hard work but I've got my son coming tomorrow to help me - he has no idea what he's let himself in for.

James and I are camping again on Tuesday to Thursday and on Friday I'm off on a jolly with the bikers, starting in Somerset and going to Dartmoor and Exmoor and staying overnight in a nice hotel. 

I went out for birthday cards yesterday and I spotted a card in a section labelled 'treatment and recovery'.  On an ochre yellow background it says 'having cancer is tough but you are tougher, it should know better than to mess with you'.  The colour will go nicely in my kitchen so I bought it for myself.😂

I hope everyone has a lovely bank holiday weekend and for those of you with children I hope half term is a breeze.  UmLydia - do you have half-term in France?

NAJ xxx

[Carmen Verandah]

The breathlessness sounds scary for you NAJ, and I hope you will have your tests done soon.  I’ve noticed that I get a little bit out of breath when I walk up the hill to the local shops, and my left ankle is usually swollen by the end of the day, but not the right one, weirdly. I asked for a second heart test but that came back okay. I had online counselling sessions with a psychologist from my hospital which were helpful and I think more things are opening up now, so that you can actually attend in person. There are also Maggie’s Cancer Centres and The Haven if your hospital doesn’t have anything.

Umlydia I hope you continue to enjoy your keep fit. What is sophrology?

I think you are right Mandy, we have all been through so much, and it’s weird not being a full time cancer patient anymore.  I went back to the chemo unit last week for my zolendronic acid infusion for my bones and it was good to see the nurses again as they are so caring and supportive.  I’ve still got problems with my sticky eyes and yesterday I had my big toenails sort of ground down by a podiatrist as I’ve got a fungal infection in them post chemo. Yuck. It didn’t hurt though. And my skin is red and sore on my collarbone still. But that’s not anything compared to not being able to catch your breath.

On the bright side, my house purchase seems to be steaming ahead and I volunteered as a steward at a local vaccination clinic which was quite fun. It was amazingly efficient and I enjoyed the feeling of power I got from moving people from one yellow dot to another while they queued up, and pretending to be an air hostess demonstrating the exits! 

I think we are going to have some sunshine too this weekend. Big hug to everyone, 

Carmen ❤️

[chesterbrownbear]

Dear NJA

i do feel for you, we’ve all been through so much and we just expect to be back to ‘normal’ once we’ve finished treatment. I think it will take a while for anyone whose been through so much, and we all recover at different rates with different issues. Thank goodness your doctor is acting quickly and understanding your issues.  Look after yourself and try and have a lovely time.  
Mandy xx

[UmLydia]

Hi NAJ

Hormone therapy has so many side effects maybe feeling out of breath is one of them. Could you check with your oncologist? 

Your GP sounds lovely. Hope you have your blood test and x-ray soon. 

You are already doing breathing exercises, keep doing that. Can you ask for any kind of counselling to help process what you have been through? In my cancer hospital I had a few consultations with a psychologist which were very helpful (mainly to deal with the masectomy but I ended up talking about other things). I know I can get in touch and see her if I need to again.  Also had free sophrology lessons that helped when times were tough. 

I felt I had psychological support not just the cancer treatment and it was very helpful. 

In the UK there are associations to support cancer patients, maybe would be good to get in touch... going through all of this with covid on top has been harder than we realise, probably. 

I hope you have a great time away camping!! See how you feel there. 

The other day I needed a gynaecological exam at the cancer hospital(to check everything ok before starting tamoxifen). The doctor said my heart beat was irregular (he could hear on the Dopler scan thing like for a baby heart). So I got sent to nurse for quick cardiograph. Then they called down the anaesthetist to check the results. I was supposed to go to one my keep fit group walks, and was like: please can you get a move on?? I'm going to be late for my walk (very politely!). I must say I was very impressed how careful they were, but apparently the HER2 positive injections I still have every three weeks are cardiotoxic. I forgot about it and went on my walk but yesterday got a phone call from a cardiologist to talk about the irregular beat. Arghhhhh. They already do a heart scan every three months to check heart and I feel fine so I am not worried. Still enjoying my keep fit classes. They are group classes so have got to know other cancer patients and that has been SOOOO helpful. I definetely feel more tired, like the spark has gone out of me, and a bit sad. The keep fit classes have been a life line for me. 

I would definetely say try to reach out and get some support for cancer patients NAJ if there is some in your area. We can't handle all of this alone no matter how tough we are. I know you are tough but sometimes we fall harder. 

Hugs

[Guest user]

Anyone else having trouble with feeling breathless?  I live close to town and I've always walked but now I get halfway there and I have to stop and rest because I'm breathless.  It's ridiculous.  I feel like I can't get enough breath into my lungs.  Had a full on anxiety attack Monday night simply couldn't find a position where it eased and ended up lying down doing breathing exercises until I fell asleep.  Saw my GP yesterday - felt really anxious that they wouldn't see me - and he was lovely.  He says my oxygen levels and heart and lungs sound fine but he wants me to have a blood test and chest x-ray in order to be thorough.  I get this all the time - even when I'm sitting down relaxing.  He explained what is happening with my lungs and why he thinks I'm feeling this way and says it is most likely due to anxiety and that's why it doesn't happen at night when I sleep but I'm finding it really scary and uncomfortable.  He says it's very common to feel like this after treatment has ended because now my brain is starting to process what I've been through but I wish there were a magic cure or a pill I could take to make it go away.

Any suggestions to ease this welcome....

Have a lovely bank holiday weekend everyone.  We're off camping but not until Tuesday.

NAJ xx

[Carmen Verandah]

Thanks for your good wishes everyone! It is exciting but a bit daunting too. Umlydia that is a coincidence.  I wanted to live by the sea but not too far from London and Bexhill seems as good a place as any! So Umlydia if you ever want to trace your roots, and everyone else, do let me know if you want to come and visit!😊.

The weather in Sidmouth has been wild and stormy but very bracing!

I seem to have far fewer hot flushes on letrozole, so far anyway, but am feeling a bit stiff now and again,  but not too bad 🤞🏻. 

Carmen x

[UmLydia]

Carmen That sounds incredible!! So happy for you! My mum's family is from Bexhill on Sea I have never been there but she always talks about how beautiful it is. I agree with NAJ- what could be better?. Brilliant news

[Guest user]

That's fabulous news and I hope everything goes smoothly.

A new future by the seaside - what could be better.

NAJ xx

[chesterbrownbear]

Dear Carmen I am so pleased for you, you have been so much over the last couple of years. I’m glad you are coping well with Letrozole, I’m finding my legs and knee aren’t. I’m finding it difficult getting up out of chairs and by the end of the day my legs are so heavy and ache like anything. I’m still doing aerobics and walking my dog but this doesn’t seem to help or hinder my legs. I suppose if these are the only side effects I can live with it, opposed to what others suffer.

Managed to take my 85 year old mum out for a belated birthday lunch at a fantastic pub in Suffolk village of Pin Mill. The weather wasn’t perfect but lunch was.  Take care all of you and stay strong 💪💪💕💕💕

[York-75]

Oh YAy!

Congratulations on your new house Carmen, I hope you will be very happy there and that the sale goes smoothly.

How exciting! And enjoy your trip with your mum. Xxx

[Carmen Verandah]

Hi to all October chemo starters

I’m writing this in a hotel bedroom listening to the sea. I’m with my 92 your old mum on holiday in Sidmouth. And, I heard yesterday evening that my offer has been accepted on a lovely little house in Bexhill-On-Sea, I can’t believe it. It’s small but in a beautiful setting looking out onto a church and cottage gardens, 10 minutes from the seafront. It’s only the third place I viewed, but I’m a woman on a mission, having spent the last year looking at properties online. I’m so excited about starting my new life 😊.

Otherwise my skin is a bit sore by my collarbone from the radiotherapy but the letrozole is okay so far.

I think the alcohol question is unresolved, I’ve just had a look online, some sites say stick to 14 units and have alcohol free days, others say 5-7 units. They all say exercise and eat a healthy diet. I hope the sea air will be good for me. Cold water swimming and cold showers are also supposed to be good but I’m not sure they are for me.

i hope everyone is doing okay. Chemo does seem a long way away now, all those injections and tablets. What we went through! But we’re here ❤️.

Carmen x 

[Guest user]

Hi Carmen,

My 'new' hair looks just like yours and funny enough I always felt that my wig seemed to add height.  I figure I have enough hair on my head now not to worry about wearing wigs or hats.

Sorry to hear you didn't get the cottage.  It might be worth telling the estate agent to keep you in mind if the sale falls through as that seems to be happening more and more now.  Happy house hunting.

I've been on Letrozole for a couple of months now.  Every now and again I feel a bit 'off' but other than that no side effects - fingers crossed.

NAJ xxx

[Karen19]

Hi Everyone,

I’ve not posted for a while and have just read all of your recent posts. It’s great to see everyone doing so well and looking so happy in your photos! 

There appears to be a common theme of embracing life and enjoying it to the full. Holiday homes or permanent moves to the seaside all sound amazing. I’m sorry to hear you were outbid Carmen and hopefully something even better will come along. 

After everything we’ve been through, I just want to travel and to cram in as many holidays as I can. We just need the rest of the world to be Covid safe first.

Like you York-75 I am having Herceptin injections until the end of the year and am also on Tamoxifen for 5 years. Other than waking up with aching fingers and thumbs every morning, I seem to be tolerating it pretty well. It’s a small price to pay after the side effects of chemotherapy which feels almost like a distant memory. Is it just me or does  anyone else look back on the chemo and almost feel like it happened to someone else?! It’s such a strange feeling...

It’s interesting to hear your thoughts on drinking alcohol after breast cancer as I’ve been doing a lot of research and what we can and can’t eat or drink.  I’ve always enjoyed wine and prosecco, but never drank excessively. When I started taking Tamoxifen my oncologist suggested limiting consumption to 7 units a week. 7 units is only 2 large glasses of wine 😬!! I mentioned it to my GP and she said she had never heard of this and there was no harm in drinking in moderation as long as we don’t exceed the government guidelines of 14 units a week. So not sure which opinion is right!

...and don’t get me started on the minefield of whether grapefruit, marmalade and soya are safe for us 😂

Any findings on food and drink would be gratefully received...

Cheers 🥂

[Carmen Verandah]

Hi everyone, lovely photos. Great that you’ve finished your radiotherapy at last Umlydia, 🌝.

I was outbid on the cottage I wanted to buy, it sold in less than a week and three of us offered the asking price😕 so I’m a bit gutted but I had a lovely day by the seaside, with fish and chips, and something will turn up I’m sure before too long.

I’ve taken letrozole for a few days and all seems okay so far......

I read we should have no more than 5 units of alcohol a week from now on, so will have to choose them wisely! I admire your will power Umlydia. 

Here’s me with and without wig. I seem to look a lot taller with the wig 😂.

Carmen 👩🏻‍🦲🧑🏼

[UmLydia]

York 75 Ahhhh your hair looks great! Very modern and stylish and young! Can see you finished chemo before us. Hope I look ok in time for swimming. 

I gave up alcohol when I had my diagnosis in August. I used to love a drink, to be honest i drank too much especially during the first lockdown. After all my body has been through I think it's better not to add more toxins... . Also the fact we need the tamoxifen makes me really feel I should stay away from it, apparently our bodies produce estrogen or something like that to metabolise alcohol. I feel a bit like an ex-alcoholic with this all or nothing approach. My partner drinks wine at every single meal so there is a lot of temptation!!

I got used to all my keep fit classes, I won't be able to go so often now I have finished radiotherapy. Will have to find an alternative because they made me feel great!. Apparently exercise is good for the side effects of tamoxifen...

Will see how it goes tomorrow

Hugs

[York-75]

Ok, it let me choose this one, the other picture was too large.

love the pic of you and your girl Umlydia 😍

So nice to have a little celebration!

I have been on Tamoxifen since January, and it is not too bad for me now. Some side effects (which weren’t awful to start) reduced more after 3 months. I am still a bit tired in the evenings, but that could also be everything we have been through. A bit hot at night, but not much. Sadly hot flushes massively increase if I have alcohol, so only one or two glasses of wine for me if I want to sleep that night! Hmf.

still, with a 7 year old in tow I don’t often get the chance to have any more, so mostly a moot point!

hugs to all! 

[UmLydia]

Hello Carmen

That sounds absolutely amazing and inspiring !!! You must be over the moon. If there is just one good thing to come out of our breast cancer let it be living our lives by our hearts as much as possible!! Wow a beautiful house by the sea after living in London for years. Sounds idyllic. How tough can life be to have to face cancer going through a divorce... then come through and make your dreams come true. I admire you!!!. I hope you get the house!!!! 

York 75 would have loved to see the photo of you and your daughter. Sounds like you are doing good. I have my three weekly herceptin with a bit of chemotherapy thrown in (called Kadcycla or TDM1) because I still had residual cancer after neoadjuvant chemo.  I should have started Tamoxifen yesterday but decided to give myself a weekend between end of radiotherapy (Friday last one)  and beginning hormone treatment. I won't grumble about possible side effects since I am still feeling in a state of grace to actually have 5 years to take it. 

Lovely to hear your news. 

 photo is me in a crowd yesterday, at a protest against the cultural lockdown in France, there is a song that has become kind of the resistance anthem in France  and the singer came to perform live which coincided with the end of my treatment so I was chuffed to be there and dance. 

[York-75]

• Sorry no joy getting pic uploaded - but I can add my emoji! 😆🙈

[York-75]

I tried to add a silly photo of me and my girl sharing strawberry laces, but I’m not sure if it worked, Carmen?

Good luck with your seaside house, hope you get it! We bought a little house at the seaside in October, and we love it! 

[Carmen Verandah]

Ena Sharples! Didn’t she always scowl and wear a tight headscarf? I’m sure you look gorgeous in comparison.

Thanks for the encouragement about letrozole, my neck is always stiff when I wake up in the morning, plus the odd ache and pain, so I hope I won’t stiffen up to much.

Carmen x

[Carmen Verandah]

Such good news Umlydia, but you must have had a hellish week. As you say, time to live our lives to the full. I have so much admiration for you and York75 going through all this when your children are so young.

I went to Seaford in Sussex yesterday, where I have never been before, and put an offer on the first house I viewed, a little cottage which has just been done up. Very small but ideal. Seaford is on the coast in the South Downs, and near Lewes, Brighton and Eastbourne. I left my partner after 42 years, two years ago and then he refused to agree to sell our house.  I went through a long and painful legal battle before he finally agreed to sell, and got diagnosed with breast cancer halfway through!  Having lived in London all my life I decided it was time to downsize and move to the seaside. Wish me luck .

I’d love to see the Mohican York75. NAJ you have one eyebrow I believe, I’ve had a sticky eye and recurrent sties for a month and my hair now looks like Wayne Rooney when he had his transplant😊.

Onwards and upwards 🌼🌷🌻

Carmen X

[York-75]

Ah thank goodness UmLydia, I am so happy to hear your good news!

I understand the feeling completely- when I found out I had cancer, all I could think about was needing to be there for my 6 year old girl. How much she needed me and how impossible it was to imagine that she could have to grow up without me. Let’s hope we both get to have lots more years with our children! Xx

Congratulations on finishing radiotherapy! Is this it for you now?

I dont really have that abandoned feeling yet that many are experiencing, as I still go to the same unit where I had chemo every 3 weeks for Herceptin injections.

I also still have brief chat with the oncologist every 3 months or so, since I am still having treatment. I asked him about getting ‘the all clear’ that people seem to expect, and he explained that for me, the pathology showed they removed everything, so on the off chance there was anything left, it would be too small to show on a scan. And hopefully chemo and rads would have zapped anything possibly left.

I guess I’ll find out in August when I have a scan, but I’m hopeful he is right.

My hair is definitely back now, I style it in a bit of a Mohican and I get a lot of compliments for it!

😆😆 you have to take the fun where you can find it!

Sadly it also comes with a very fluffy face, I have given up on it disappearing on its own and taking action with a threading tool... 

Lots of love and best wishes to all, hope you are all in good spirits! Xxx

[UmLydia]

Hi Carmen

I had my scan today. It was OK no metastasis. It coincided with the last day of radiotherapy. This week of waiting certainly put things into perspective. I think my life will always be different after this week. I hope I can keep the feeling of gratitude and what is really essential and perspective I have right now. 

I thought yesterday what I was going through couldn't really be much worse, on a personal level, yet I dealt with it. 

Feel ready to move on after all this treatment and get back to life. Slowly -first need a period of building my strength back up.

I cried when i got back home and saw my 10 year old just thinking I am going to see him grow up. 

Hugs to everyone. 

Let's turn this disease into an opportunity to live our lives as beautifully as we can. Connect with the people close to us, value friendship, our inner selves, meditation, yoga, gardening, travelling.... 

Hugs to everyone. 

[Guest user]

Hi Mandy,

Like you I haven't seen a doctor since last August post-op.  People keep expecting me to say that now treatment is over I've got the all clear, but since they only seem to be planning a mammogram in late August how can I know?  They found cancer in my lymph nodes so potentially it could be anywhere or nowhere.

I've decided the only attitude to take is that they've thrown everything at it so now it's sink or swim and I'm assuming I'm a swimmer.  It would be no sort of life if I thought this was going to kill me.  Last time I was ill I wasn't aware that my chances of survival were only 40% so I just assumed I was going to get better and I did.  The power of positive thinking?

Have a good weekend.

NAJ xx

[chesterbrownbear]

• Hi Carmen, don’t worry too much about the Letrozole, I was really worried and I’ve now bee on it for 2 months. So far the main issue I have is my knee joints, getting up and down I feel like an old bid. Like you I’m vain 😄 and I hate my grey hair, but not only that it’s growing back CURLY 😮, if any one remembers, I don’t want to look like Ena Sharples 🤣🤣🤣🤣🤣 I hope you don’t get many side effects 💪💪💕💕

[Carmen Verandah]

Thanks Michelle, I read the article and found it very helpful. I couldn’t quite understand the difference between all the stages but I guess they overlap quite a bit. It certainly has helped to me to slow down, rest a bit more and start to try and process everything I’ve been through.

Amazing that you went climbing in Nepal 3 months after your treatment! I’ve walked 18000 steps in a day on one occasion since stopping chemo 😊. I need to start doing regular Pilates again and I wanted to go back to jogging because I did Couch to 5k this time last year, but I’ve got tendinitis in my Achilles‘ tendon, just woke up with a shooting pain one morning. But I hope to be able to jog again in super cushioned running shoes before too long.

Wishing you good luck with your treatment.

Carmen 🌼

[Carmen Verandah]

Hi Mandy

I agree that you should definitely see someone after your treatment.  Is there a breast care nurse you can contact? I think so much has been replaced with telephone ‘consultations’, but it doesn’t sound as if you got any of those either. I find it really difficult to get hold of a GP so I email the breast care nurse at the hospital where I had my op and chemo and she always gets back to me quickly.

I’m going to pick up my letrozole tablets from the pharmacy today. My main worry is menopausal side effects for 10 years, especially thinning hair! I’m so vain and shallow! My hair is growing back so quickly you can almost hear it growing, but it is sparse, and I don’t want to lose any more .....

Lovely that you could finally  escape from the borders of Essex to see your family! It must have been so hard not seeing them for so long, especially the baby as they change so much in that year.

Carmen 🌻

[Carmen Verandah]

Umlydia, I have read that radiotherapy itself can lead to fatigue, as well as the travel to and from. And you have so many sessions, but great that you are combining it with keep fit sessions at the hospital. Its odd that France has such a different regime to the UK where it seems to be 5 or 15. I really admire your attitude and strength and I hope your daughter had a lovely birthday and that you are doing okay, amid all the uncertainty. I’m sending you a big virtual hug 🌞.

[UmLydia]

Thanks Shi, yes I am grateful to my team for being thorough. It's true i had been over doing it and I didn't think about radiotherapy dehydrating me. I hope that was it. My team here say radiotherapy doesn't make you tired, that the travelling does. But i do think that all that radiation must have some effect on the body. 

I am taking corticosteroids, I read it is to reduce inflammation on brain for tumours, i'm taking them I don't want to know if I have a headache although I am so worried and in shock it's hard to tell how I really feel. 

Yesterday I celebrated my six year old daughter's bd with her school friends which was a blessing really because it took my mind off it. But i did have silent tears streaming down my face making the cake. 

Oh dear this is so horrible. 

NAJ I agree with Carmen if you can get a fitting with someone who specialises in masectomies it might be helpful. I ordered Amoena bras online and got the wrong sizes. I will see a prothesist lady when I get my silicone prothesis. They are waiting for radiotherapy to finish and scar to heal. Be gentle on yourself, I am very energetic and find it hard to slow down but sometimes we just have to listen to our bodies. Your holiday sounds lovely. Maybe you will end up climbing mountains. 

Carmen I agree radiotherapy made me teary as well, the end of treatment etc. Then I got used to it because it is so long-5 weeks. And focused on seeing my friends and enjoying the sunshine, I sometimes nearly forgot my radiotherapy appointments.  After this dark winter so lovely to enjoy spring. 

Hugs to everyone. Thanks for the article Michele21, I already shared it, it's very good, everyone should read it. 

[chesterbrownbear]

Hi Carmen, no problem we are all going through difficult times. My psoriasis is still giving me jip, but time and the sun will help. I have not seen a doctor since I had my lumpectomy last July, and it does bother me as how does anyone know if I’m ok. After radiotherapy I just feel left, how do they know if it’s gone and I’m “All Clear”? There just doesn’t seem to be finality to all this. What has helped was that 2 weeks ago we were freed from Essex and ventured down to Devon to see my sons family. It was lovely, the sun was shining and this was just the second time I saw my youngest grandson, he is 1 next week.  We had a wonderful long weekend as my so. Has just finished his holiday cottages, so we could stay there.  Hopefully this country is getting back to normal, and so will we all 💕💕💪💪💪 Mandy xx

[Michelle21]

Hi you’ve probably heard of this but thought I would mention it just in case. “After the treatment is over, then what?” By Peter Harvey. I read it a few times after I finished treatment last time and found it very reassuring. I remember crying a lot after rads, I think you go into auto pilot during treatment getting through each stage as best you can and when you finish there is the relief that it’s over and the worry of the future. 
Anyway thought I’d mention it. I often read the posts on this thread you’re a lovely bunch, I hope that in 6 months time I will be where you all are.  
Also re tiredness and climbing mountains  I went on a charity climb in Nepal 3 months after my treatment finished. We did train for it and although it was Nepal it wasn’t base camp! I found it therapeutic to be there but also upsetting as a couple of fellow walkers had lost wives to BC. But on the whole felt like a great achievement and drew a little line under ‘being ill’  
Thought I would share my experiences. 

 Hope you all feel back to yourselves soon x

[Carmen Verandah]

Hi CBB

I was scrolling down and I realised I hadn’t responded to you, I’m sorry, I was in a bit of a radiotherapy tunnel. I hope your psoriasis isn’t too bad. I feel relieved the radiotherapy is over with,  but strangely anticlimactic, given all the big interventions are done and it’s just (!) 10 years of hormone tablets now. I’m awaiting a DEXA bone scan and an ECG next week, 5 more doses of zolendronic acid for my bones, a follow up phone call from a radiotherapy doctor, (I never clapped eyes on one, just a phone call before I started), and a follow up call from the oncology team who prescribed my chemo. It does feel odd. I’m seeing the surgeon in real life in August, and then yearly mammograms for 5 years I think. The breast care nurses are very good if I email them and always get back to me quickly.

I guess I just have to take time to process it all, everything we’ve been through, and the pandemic,  and take life a bit more easily.

Take care

Carmen 🌻🌞🌸

[Shi]

Umlydia ❤️ It’s good to hear your team are being thorough. From experience rads does cause fatigue and it was probably about 3 months after finishing all treatments that one day it felt like back to me pre cancer physically strength wise , was back at work full time 3 weeks after finishing (my choice) it’s still important to drink lots of fluids post rads, found got dehydrated more quickly during and post rads, again for me that settled around 3 months after finishing all treatments. Hope this might help ❤️ Sending ❤️👭❤️💕💕✨✨Shi xx

[Carmen Verandah]

NAJ It must be very frustrating feeling so tired, it’s really hard accepting having to do less. I’m taking my mum to Sidmouth in Devon for four nights. I think the trip will involve sitting outside the hotel, which is on the front, looking at the sea and eating a cooked breakfast, then waiting for a cream tea and then dinner, maybe with a tartan travel rug over our knees to keep out the sea breezes! Not my normal holiday but I’m really looking forward to it.

Snowdonia is so beautiful, my dad retired to Anglesey so I’ve  been there a lot. I hope you and James will find things to enjoy and take in the wonderful views without climbing to the top.

Cx

[Carmen Verandah]

Apologies for the radio silence, I have been getting through my radiotherapy which ended yesterday. UmLydia I am in shock to read about your needing a scan to rule out a brain tumour and the calm way in which you describe now having to wait for it, and then having to wait for the result. I hope your head isn’t still hurting as much, and have my fingers and toes crossed for you.

NAJ, I’ve  been too busy feeling sorry for myself and mourning the loss of my nipple and hadn't really given a thought to the difficulties of finding comfortable bras and prostheses. After my surgery I took the wires out of my underwired bras and wore those for a while, before buying unwired ones. I think you need to go somewhere to be fitted for both prostheses and mastectomy bras. It’s hard enough buying a well fitting bra online, and must be much harder if you need a prosthesis too. I know Amoena do a big range. I think Breast Cancer Now has a booklet about it too with lots of suppliers.

I keep putting nail varnish on my knarly nails to hide them from view. However I have lots of lashes and brows and the hair on my head is coming in fast and very similar to how it was before.  Luckily I’m not feeling too tired but I am going to rest and take things easy in May.

I found the 15 days of radiotherapy tough, with appointment times anywhere between 8am to 7pm, long waiting times, seeing different staff almost every day and sometimes having to hold the position for 45 minute. I cried through some sessions when I got pins and needles in my arms. When I told the review radiographer how I was feeling she got a manager to ring me to listen to my concerns. I don’t like complaining, I know they are very busy and there were people there a lot sicker than me, but I felt the staff could have explained what was happening a bit more and been a bit more caring. My neck is now very stiff and painful from lying on the bed with arms raised. But my skin is okay, just a little red.  I had two lovely massages in the cancer centre, and after some of the sessions I did some shopping in Oxford Street, treated myself to breakfast, coffee or lunch, and met some friends and explored a bit of central London in lockdown in the sun. 

The next challenge is starting letrozole for 10 years. I’m going to get them from the pharmacy today. I wish I hasn’t read the list of possible side effects😱. Watch this space.....

Sending lots of virtual hugs and positive thoughts,

Carmen 🌻🌸🌞

[Guest user]

Blimey Lydia, you don't do things by half do you.  While the thought of scanning for a brain tumour is tremendously scary it shows they take things seriously and won't just fob you off with a pat on the head and a packet of paracetamol. 

I am finding the fatigue hard to cope with.  If I walk too fast or overdo things I feel physically ill and I have to slow right down.  It's quite a change from the pace I used to do everything at. 

I'm just busy planning an itinerary for young James and I to do the Snowdonia 360 in August.  We won't be climbing Snowdon that's for sure.  I'm trying to make sure I don't plan in too much driving or walking and putting in lots of places we can potentially stop for coffee and cake if I need a rest.  Fortunately there are lots of steam railways so I'll be guaranteed a sit down for the journeys.  Unfortunately most of the castles are up a hill.  Reminds me of the time Martin and I stayed in France.  We went to Mont Segur (?).  At the start is seemed like a really good idea to visit the castle at the top but I practically needed oxygen by the time I got there.  Madness.  Really made me wonder how they ever managed to get all the stone up there to build it in the first place.

Take care and enjoy the weekend

NAJ xx

[UmLydia]

Hi NAJ

My prothesis is still the soft tissue post surgery one, I haven't had the proper silicone one yet. It looks OK. I have been wearing an amoena top most of the time, it has a pocket for the prothesis and has a kind of built in bra for the other breast. It gives good support and looks nice.  I wear it all the time instead of a bra. The mastectomy bra I bought is too tight and makes my cording worse. I think there are different models for the prothesis, can you get an appointment to see your surgeon for another lighter prothesis? It's so important to feel comfortable with it and be able to get on with life not worrying about our breasts or lack of breasts....

It's crazy your nails are still falling off... must be tough for morale. 

My hair is at last starting to grow a bit thicker as well. I still wear my headscarves, there is no way I am going out looking like a toilet brush. But by end of June I think it will be alright, at least to go swimming. 

I just finished week 4 of radiotherapy. One last week to go. It's going OK, very red at the moment but doesn't bother me too much. 

Everything is going OK except this morning I woke up with really bad headache, nausea and weakness. I called the hospital to say I wouldn't be able to make it in for radiotherapy (I couldn't even drink a cup of tea) and they said get a medicalised taxi and we will do a brain scan after radiotherapy. 

So i went to the hospital and saw the radiotherapist and she said I will have the scan next week just to out rule a brain tumour. So feeling in shock. 

 Maybe I have been over doing things with all the sport and seeing friends and generally having a great time enjoying the weather.... and my body is telling me to calm down. 

Hugs

[Guest user]

It's all gone quiet - is that because we're all basking in the glow of treatment being over?

My nails are starting to peel off again - yuk.  I definitely look like I've been tunnelling out of a prison cell barehanded.  My hair is getting thicker so I reckon I won't have to wear the dreaded wig when I go away in June.  Yesterday I tried to wear one of my underwired bras but it was so uncomfortable I took it off and I've thrown all my underwired bras in the bin.  My prosthesis feels incredibly heavy and the 'proper' bra looks like something that would hold up a bridge.  What I don't get is why the prosthesis still seems to be shifting towards my existing boob.  It's a pain because the bra doesn't then sit against the skin and you can see the prosthesis - admittedly not much of it but enough to make me feel aware of it.  Anyone else having this problem.

I hope that everyone is doing well and feeling good.

NAJ xx

[UmLydia]

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]

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 💪💪💕💕💕

[Guest user]

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]

😁😁😁👏👏👏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