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October 2020 Chemo Starters

UmLydia
Member

Re: October 2020 Chemo Starters

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
Not applicable

Re: October 2020 Chemo Starters

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
Member

Re: October 2020 Chemo Starters

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
Member

Re: October 2020 Chemo Starters

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
Not applicable

Re: October 2020 Chemo Starters

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

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

NAJ xx

chesterbrownbear
Member

Re: October 2020 Chemo Starters

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
Member

Re: October 2020 Chemo Starters

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
Member

Re: October 2020 Chemo Starters

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
Not applicable

Re: October 2020 Chemo Starters

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
Member

Re: October 2020 Chemo Starters

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
Member

Re: October 2020 Chemo Starters

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 😂.

28FC1AF5-174A-4A6A-9C87-C2A7748F3E24.jpegD826ADF9-4E6B-4BD0-AF14-035CA9510761.jpeg

Carmen 👩🏻‍🦲🧑🏼

 

UmLydia
Member

Re: October 2020 Chemo Starters

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
Member

Re: October 2020 Chemo Starters

BACBFF7D-8835-48F3-9344-1F7EB7EC5CEE.jpeg

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
Member

Re: October 2020 Chemo Starters

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. 

20210508_123824.jpg

 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
Member

Re: October 2020 Chemo Starters

  • Sorry no joy getting pic uploaded - but I can add my emoji! 😆🙈York-75_0-1620504942884.png

     

York-75
Member

Re: October 2020 Chemo Starters

 
York-75
Member

Re: October 2020 Chemo Starters

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
Member

Re: October 2020 Chemo Starters

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
Member

Re: October 2020 Chemo Starters

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
Member

Re: October 2020 Chemo Starters

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
Member

Re: October 2020 Chemo Starters

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
Not applicable

Re: October 2020 Chemo Starters

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
Member

Re: October 2020 Chemo Starters

  • 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
Member

Re: October 2020 Chemo Starters

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
Member

Re: October 2020 Chemo Starters

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
Member

Re: October 2020 Chemo Starters

 

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
Member

Re: October 2020 Chemo Starters

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
Member

Re: October 2020 Chemo Starters

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
Member

Re: October 2020 Chemo Starters

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
Member

Re: October 2020 Chemo Starters

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
Community Champion
Community Champion

Re: October 2020 Chemo Starters

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
Member

Re: October 2020 Chemo Starters

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
Member

Re: October 2020 Chemo Starters

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
Not applicable

Re: October 2020 Chemo Starters

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
Member

Re: October 2020 Chemo Starters

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

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Re: October 2020 Chemo Starters

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
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 💪💪💕💕💕

Guest user
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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 💃🏽

Guest user
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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? 

 

Guest user
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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.