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October 2020 Chemo Starters

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Not a jockey
Member

Re: October 2020 Chemo Starters

Hi York,

It's good to hear that you are doing so well and getting out and living your best life.

I have pretty much always had a dog and had to have my beloved dog Iris put down two days before the end of my radio treatment.  I'd been selfishly hoping she would see me through all my treatment but it wasn't to be.  We want to get a Bedlington/Whippet cross.

It must be so hard not being able to see your mum - and she must be desperate to see you too!

I had my first annual mammogram about ten days ago and got a letter from my consultant telling me there was nothing to be concerned about and this was 'most reassuring'.  I find long earrings look great with very short hair so it's the perfect excuse to buy more 😊.

Hope everyone is enjoying the sunshine.

NAJ xx

UmLydia
Member

Re: October 2020 Chemo Starters

Hello Linda, that's great news, i hope we have no more scares for a while now. The emotional roller coaster is exhausting. At least the nurses were nice and sympathetic to you. It's obvious we can't go around with unchecked lumps in our bodies. Now you can enjoy the rest of the summer, definitely earnt it. 

Chesterbrownbear hope this new medicine will be kinder to you, hopefully no side effects at all... do you try to walk or exercise to help with the tiredness? 

I have cystitis, haven't had it for years, not even under chemo. So having to rest and let the antibiotics kick in, which is the last thing i want to be doing ha ha. Luckily the kids are with my mum so i can rest properly and so can my partner, who never really gets a mention, he is really great he looked after the kids and did everything in the house so he deserves a break too.

I suppose it is like a marathon this whole treatment/experience. I usually spend summer here in Spain and i am so glad to be able to do kadcyla treatment near the border i don't mind the 300 km drive. I just hope my cystitis clears up fast because i am supposed to go up soon. I like the heat i wait for this weather all year. 

York75 so sorry you couldn't visit your mum. That just isn't fair. Plus you all had your covid injections ages ago. I don't understand it. It's really tough having close family you are not allowed to see. I saw my sister for the first time in two years, her 1 year old baby, was so happy!!! I feel upset for you. Its great you have a little place by the sea though!!! Sounds lovely.  

I still don't feel comfortable letting people see my short hair, unless i wear lots of make up to compensate for the masculine effect. 

Hugs everyone

 

 

Carmen Verandah
Member

Re: October 2020 Chemo Starters

Hi everyone 

NAJ that is such good news, but it must have been awful waiting and worrying. So relieved for you. And exciting to be getting a puppy.  

Umlydia, a 6 hour round trip sounds a long way but great you were able to arrange it and can relax on the beach with your family. We’ve finally got some sunshine here.

CBB I hope you will get on better with the new tablets, fingers crossed. 

York75 I’ve ditched my wig too as it is is too hot. I feel a bit manly but it is easy to style! My furniture arrived last week and then I went away for a week the next morning to a caravan with some friends. There is lots to do in my new house but it feels a bit as if I’m still on holiday.

Big hugs to everyone,

🌞🌸🏖

Carmen

chesterbrownbear
Member

Re: October 2020 Chemo Starters

Dear Not a Jockey, I am so pleased for you, when will this marathon ever end. Dear Umlydia I did feel emotional reading your last post, I don’t want people to feel sorry for me but I just want understanding. 
My appointment on Monday with the breast nurse has been postponed as she has to self isolate due to COVID 🤷‍♀️. On a new drug now, Anastrozole due to my previous side effects, hope this is better but it does say expect drowsiness and contains latulose 🤷‍♀️.

look after yourselves 💪💪💕💕💕

York-75
Member

Re: October 2020 Chemo Starters

Hello there, how is everyone?

NAJ, I am so relieved to hear the lump was nothing to worry about. It must have been another emotional roller/coaster. Hope you have a wonderful birthday. And how exciting to be looking for a puppy. Hope you find one that doesn’t cost a fortune! Have you had dogs before?

 

Umlydia, I’m so pleased you have been able to see family in Spain and go on the beach, sounds heavenly.

I optimistically booked to see my mum who is abroad, but rules have changed there so I can’t go. Guess I’ll have to be patient a bit longer.

carmen how are you settling in your new house? I hope it is starting to feel like home.

 

im doing well, we are enjoying goi g to our little house at the seaside at weekends, and I have a lot of leave to take in august, so this will be a great place to come. Very lucky to have this opportunity in a year when lots of people are wanting to go away, but can’t.

I still feel a bit tired in the evenings, but I can work (part time, I went back in February just after radio- but I worked from gone and had a phased return) run and exercise and do things with my girl, so not being able to have late nights is a small price to pay. I think it is the tamoxifen. Sleeping when it is hot can be tricky.

I am looking forward to getting my first annual mammogram, I’m expecting august or September. Hopefully hearing that is clear will make me feel so much better.

im heading into my last quarter of Herceptin soon, hope I will be done in October.

I’m loving my short hair now snd I’m not even sure I will grow it. It is easy for exercise and quick to do, and many people tells me I look younger. I still feel sometimes in pictures it looks a bit ‘manly’ but I’m keeping it short for summer at least.

hugs to all! Xxxx

Not a jockey
Member

Re: October 2020 Chemo Starters

Hi Emma,

Somebody said that cancer treatment was a marathon and not a sprint and you're certainly making that true.  A six hour round trip in this heat - definitely a marathon.

The lump turned out to be a solidified seroma and nothing to worry about.  Honestly I could have skipped out of the hospital.  They were all lovely about it and said I'd done the right thing getting a referral.  So relieved - and you know how that feels.

I'm having a birthday tea tonight with all my family and I've been looking at adverts for puppies but I won't get one until the autumn when we've finished camping for the year. 🙂

Hope everyone has a lovely weekend.

NAJ xx

UmLydia
Member

Re: October 2020 Chemo Starters

Hi Linda!

That does sound like a palaver to get an appointment.  You would think it would be more straightforward once you are in the system and have been through all the treatment.  Its tough having to wait when you are worried and you need to get it seen to. Will you have a mammogram on Wednesday?

I had a six hour return journey for treatment today. I am staying in Spain and my oncologist arranged for me to have Heceptin in the south of France, near the border. Was amazingly nice of my oncologist. I had to drive up just to see the new oncologist before treatment, but where I live in France is so far it would have taken me all day to drive there!! In the new centre in the south of France they told me they almost never accept "chemo turism" !. 

I'm just so happy to see my family and chill and go to the beach.  With my lovely masectomy bikini. 

Lydia is my little girl and Um or Im means "mother of" in arabic. I'm not arab but i lived in the middle east years ago. I like arabic culture.  

I can understand my friends being tired of hearing about cancer. I am tired of talking about cancer. Its true we have the chance it will come back hanging over our heads. Luckily the oncologists do everything they can to prevent that. Which is why i am driving hundreds of km today so i can get my targeted therapy injections.... 

Hugs for Wednesday. 

 

Shi
Community Champion
Community Champion

Re: October 2020 Chemo Starters

❤️Just gentle reminder, please be careful when you put where you are on open forum, the whole world can read it ❤️ please keep safe 💕💕Shi xx

Not a jockey
Member

Re: October 2020 Chemo Starters

Hi Emma - where does UmLydia come from?

I'm a Linda but there was already a Linda on here so I went for Not a Jockey as I live in Newmarket but have never wanted to ride a horse!

I have an appointment on Wednesday this week.  That was a palaver.  When I found the new lump I rang the breast unit who said they couldn't see me unless I got a referral from my GP.  Got that but having waited a week to hear about an appointment I chased it.  My GP emailed me copy of a letter from the unit giving me log in details so I could book online (I've still never received that letter).  Tried that but got the message 'there are no appointments available for you'.  Rang the surgery again and they got me an appointment for this week - one day before the 14 day deadline.

It's interesting that you feel your friends have 'sympathy fatigue'.  Until you've been through this you have no idea how terrifying it is and how it changes your whole viewpoint of your health and future.  It really is like having the sword of Damocles hanging over you.  We were camping this weekend and I woke up on Saturday with a huge lump on my neck.  My first thought was 'OMG it's in my lymph nodes' but James took a photo of it and I'd clearly been bitten by something overnight.  😂

I'm seeing a different surgeon this time and keeping my fingers crossed.

Carmen - how is life in your new house?

Hope everyone is keeping well,

NAJ

UmLydia
Member

Re: October 2020 Chemo Starters

Hello Naj

Did you manage to get an appointment for a mammogram? I hope they will get it looked at as soon as possible.  The waiting is very hard. Since we already had a period of waiting and it turned out to be bad news at the beginning nobody can say anything that will take away the worry until you get it seen to. 

I found friends had run out of sympathy and support when i was  finishing treatment but kept having false alarms. Plus its not novel anymore. You just want to turn the page and get on with your life. 

I hope you will get that dog. Do whatever makes you feel good. You deserve it and the dog will have a lovely home. 

Carmen your neighbours sound so lovely!! Its great you are back to work. What do you do at the wedding? Sounds glamorous. 

I'm really happy i am seeing my sister for the first time in two years.

Hugs to everyone. 

Emma

Carmen Verandah
Member

Re: October 2020 Chemo Starters

Hi everyone,

 

NAJ I’m so sorry to hear about the lump you found, and I hope you will be seen swiftly. And that you lost your mother in law. No wonder you are feeling fragile.

CBB will you be on Tamoxifan instead? I seem to be okay on letrozole but I do feel a bit stiff sometimes. I did read that different manufacturers’ versions suit people differently, which surprised me as I thought a drug was a drug! 

Umlydia I hope you have lots of fun on the beach this summer, and on your trip to Naples, I’ve always wanted to go there. 

So I got the keys to my house on Monday and camped there for a couple of nights without hot water or a bed, as my furniture doesn’t arrive until next week and it needs a new boiler. I’ve met the neighbours who are all very friendly which is great. I did lots of cleaning,  and the estate agents gave me a bottle of Prosecco. It felt a bit weird sleeping there but I think Im going to be happy living there. I was doing a clear out at my mum’s and I found several chemo hats and I thought should I give these to the charity shop or keep them in case my cancer comes back. Then I thought give them away for heavens sake, but I guess it shows that that fear is always in the background however much we try not to think about it. I’m back at work doing weddings but only part time, three Saturdays a month and the odd Sunday and weekday and it’s been fine. I’ve been wearing my wig still so it’s going to be disappointing when it’s just my own short and fine hair.

Big hug to everyone, take care of yourselves

Carmen 🌺🌻🌞

Not a jockey
Member

Re: October 2020 Chemo Starters

It's such a relief to hear that I'm not the only one feeling fragile.  Sometimes I wonder if all the trips and camping are just displacement activities - by being busy and out and about I can pretend nothing's happened.  Had to see my GP yesterday as I found a lump - she thinks it could be scar tissue but now I'm waiting for a referral back to the breast unit.  I'm trying not to worry because she might be right but I have very mixed feelings about this - you know what that's like Lydia.  If it turns out to be nothing to worry about I think I'll get a puppy.  I'm looking after my friend's French Bulldog this weekend and it's reminded me how much I miss my dog.

I can sympathise over the school situation Lydia.  I used to be a teacher and things can get very political.  I worked in a school where the Head employed her sister and best friend and it was pretty awful at times. CBB - I had no idea there were only a few manufacturers making Letrozole.  I hope the new prescription works better for you.  I can't imagine what it must be like facing a return to work.  As a foster carer things just carried on the same for me because at 14 James is pretty independent and I had a lot of support available.

Have a good weekend everyone.

NAJ xxx

UmLydia
Member

Re: October 2020 Chemo Starters

Naj i don't think we can be like before.  We still have physical side effects from treatment and psychological effects from all we have been through. I think it changes us and you are amazing you are booking all the camping holidays and living life to the full despite the fear the cancer will come back and the tiredness. Maybe it can help us live an even fuller life. We have been living in the present so much taking each day as it came during treatment.

I feel emotionally fragile, up and down, somtimes full of energy even a bit manic after the relief of not having secondary cancer, sometimes really drained and empty. I get aches in my legs and a dull tiredness that is very unpleasant, must be tamoxifen side effects kicking in...I'm worried about going back to work, especially in one music school where i teach the director is not supportive and he is trying to give my job to someone else (his wife!!!) . Its hard coping with extra stuff. I'm fine as long as i can do my own thing and exercise. But being in the real world and running around, being in charge of other people seems too much. I feel i will just start crying! Which is so not like me... at first i will go back part time, in France there is this gradual back to work scheme after a long illness. I don't think i could cope going back full time anyway. 

Luckily have the whole summer to look forward to before all that.  

I bought myself a special swimming prothesis, then i can go to the beach in my bikini with fake booby, and put other prothesis in a special top so i can change on the beach without swapping prosthesis! The beach logistics of breast cancer survivors. Spending so much money on special bras and swimwear but I think its worth it to feel confident. Also will have to give up my headscarfs and accept my hair is very very short! Not easy accepting new image in public. At least i can wear make up now, my eye doesn't systematically get all gungy every time. And all the keep fit classes are paying off, in some ways i feel fitter than before having cancer which is ironic. 

Chesterbrownbear hope the meeting with oncologist went well. Hope he can help you with side effects. Its such a pain having to put up with them. 

Good luck for your mammogram Naj. 

Enjoy the summer everyone

chesterbrownbear
Member

Re: October 2020 Chemo Starters

Dear Not a jockey, you are having a tough time, please take care of yourself and enjoy life today as much as you can. Up until last year I worked in a pharmacy so I have a good relationship with them. There isn’t a shortage of Letrozole but there isn’t a choice of manufacturers. Unfortunately doctors and nurses don’t normally know of shortages, but the pharmacy are the ones who can tell you .  I spoke to my oncologist Friday about my aches and pains and fatigue, he said it was classic side effects. He suggested changing brands, which I have since found out that’s not an option, so his will be sending me a prescription for an alternative drug. I must say since all this started I get more emotional, especially when I hear people like Bowel Baby who has grade 4 bowel cancer and she is so young.

Thank goodness it’s a nice sunny day today, went out for a delicious seafood lunch with my husband and black Labrador, and a beautiful walk down the canal after, a great way to lift the spirits.

Stay strong everyone, we’ve all gone so far 💕💕💪💪. Mandy xx

Not a jockey
Member

Re: October 2020 Chemo Starters

Hi Everyone,

Spoke to the oncology breast nurse yesterday ahead of my bisphosphonate injection on 21st July.  Mammogram is on 9th July.  I asked her if there was a supply problem with Letrozole because I'm now on a third different brand.  She wasn't aware of one.  Apart from the fatigue (which she says could last 18 months!) I don't feel like I have any side effects from the drug, which is a relief, but when I am stressed I get terrible pain across the top of my back and shoulders.  If I stop for a couple of minutes and do breathing exercises it does tend to go so it's clearly anxiety related.  My late partner's mum just died from cancer and the funeral is next week.  I'm sure I'll be in pieces at the service - it's a terrible reminder that we are all mortal. 

I never used to worry about my health but that's all changed - I'm so scared the cancer will come back. 
I hate living in fear - maybe as time passes I will get more confident about the future.  Right now I really miss having someone special to give me some reassurance.  My friends say I look well now treatment has finished but I'm finding this time very hard. I hate the fact that I can't do things as easily as I used to.  I want to live my life to the full and at the moment it feels like the after effects of the treatment are limiting me.  Last night I thought I'd found another lump and then I thought I was probably imagining it because nothing is the same as it used to be, but as a result I barely slept.  Clearly need someone to knock some common-sense into me. 

In an effort to have a 'normal' life I've booked lots of camping trips plus we're doing the Snowdonia 360 route in August and yesterday I booked tickets to see Joseph and his Amazing Technicolour Dreamcoat in the school hols. 

Carmen the view from your new house looks so tranquil.  I hope your move goes smoothly.  

UmLydia - have a lovely time over the summer.  Can't decide if weighing myself naked is cheating because if I had the prosthesis 'on' I'd probably be at least 1lb heavier!

Take care everyone

NAJ xx

UmLydia
Member

Re: October 2020 Chemo Starters

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
Member

Re: October 2020 Chemo Starters

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
Member

Re: October 2020 Chemo Starters

1E73DDA2-9018-48FD-8A0B-8F116A0C2D02.jpeg

The view from my new house 😊

Carmen Verandah
Member

Re: October 2020 Chemo Starters

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

Not a jockey
Member

Re: October 2020 Chemo Starters

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
Member

Re: October 2020 Chemo Starters

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
Member

Re: October 2020 Chemo Starters

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 💪💪💕💕

Not a jockey
Member

Re: October 2020 Chemo Starters

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
Member

Re: October 2020 Chemo Starters

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
Member

Re: October 2020 Chemo Starters

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
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

 

 

Not a jockey
Member

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

Not a jockey
Member

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 

Not a jockey
Member

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. 

 

Not a jockey
Member

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 🌻