[@JulesW]‍ 

Welcome to the site no one wants to join. I only joined recently and everyone is very friendly.

I was diagnosed with breast cancer in December after a mammogram. I had left breast ductal cancer. Grade 2. 5mm lump. Ostrogen and progesterone both positive. Her2 negative. I had a wide local excision and sentinel node biopsy. Went in 29th December at 7am home at 3pm. I have 2 scars, one on my boob and the other is under my armpit both are about 4inches long. On coming out I had 2 dressings which I took off after 6 days with advice from my breast care nurse. Started my excercises the next day gently at first. I found under the armpit the most uncomfortable, I used a soft sock tucked underneath trapped by my bra straps. You will be given stockings to wear for 2 weeks after the operation. Take any painkillers that you need. I was very tired and weepy for a few days after my operation. 

The magaseed was put in the week before. Bloods were taken on Christmas Eve and I had a covid test on Boxing Day. 

Unfortunately when I was given the results my lump was actually 15mm, removed 2 lymph nodes. Now I am having another operation on Tuesday 26th January this is to scrape all the pre cancerous cells and remove more lymph nodes. (DSIC) I had a covid test yesterday.

Everyone is different in how they deal with cancer, I'm the type of person who has told nearly everyone. My husband is my rock. Fortunately he has isolated with me. That was hard when he couldn't come to most appointments but was able to come in for the results.

I have cried and moaned a lot over the past few weeks, but also laughed with others.

You don't have to be strong, you can have wobbles. 

Phone your Breast care nurse for more information as that's what they are there for.

Good luck with your operation.

Litchielou x

[@Litchielou]‍ 

Thank you for replying and for all the information.

It's good to have an idea what to expect and to hear there are exercises to do afterwards.
I have a lot to learn and felt I had no one to ask. I didn't want to call the breast nurses as could see how busy and stressed they are. I know they need their time to help people in much worse situations. 
We have a lovely but energetic dog so been told my husband can't isolate with me as has to go out to walk the dog. Also two sons so trying to be "brave" for them. Very strange times when this leaves us in separate rooms. I guess I'm usually very busy, now have too much time to think and am missing them all.
I'm surprised how lonely I feel and know it's my own fault because I have told my friends and family what is happening and they are all amazed how positive and unphased I am! It seems I'm very good at hiding how I feel.

It sounds like you are really going through it. Thank you for sharing details about your journey with me. It's very kind of you and has really helped.

Best wishes for your op tomorrow and for recovery afterwards.
Thank you so much for replying

Jules x
 

Thank you for the update. I was thinking about you and hoping you were recovering well. You sound in a much more positive place!

Here's to you getting the results you need today!

Im finishing radiotherapy tomorrow so I can finally get away from appointments and needles! I too feel very grateful I get to type that sentence out.

Thinking of you today and sending positive hugs x 

[@JulesW]‍ 

Just wanted you to know I went for my oncologist appointment today and I don't need chemotherapy. My score was very low so it's not beneficial to me.

I've been put on an hormone tablet Letrozole. And referred for radiotherapy. 

Unfortunately when I had my CT scan they have found cysts??  on the top of my spine. Having a bone scan in a few weeks. I'll also be having Bisphosphonate treatment. So back to the waiting game.

Read about the side effects of these tablets and now trying to get as much information I can to help me stop any.

Good luck with your treatment

Litchielou x

Hi [@Litchielou]‍
It sounds like you have really been through it. I can't imagine what a rollercoaster of emotions it has been for you. I hope your bone scans results are good and you do not have bad side effects from any meds or the radiotherapy.

I'm healing well but am surprised I'm still a bit sore after the op and tbh quite emotional - very up and down. My results showed some intermediate but still non invasive cancer so the surgeon has now suggested radiotherapy. I have a phone appointment with the oncologist later this week so will know more then. I'm guessing it's possible they may advise radiotherapy is not needed but time will tell and I will follow their advice.

It's such a strange time and I hope you're doing ok. Take care of yourself and give yourself a chance to process everything that is happening. Good luck with your treatment and results x
 

[@JulesW]‍ 

Thanks for your message.

I'm pleased that you are healing well as I keep saying one day at a time. Don't worry about crying even now occasionally I still have a good cry but don't know why. We have gone through a difficult process. My pain has nearly gone just feeling of cold in my boob and arm. Keep doing the exercises as that helps. You need to be able to get your arm straight for the radiotherapy if needed.

Had my bone scan last week and as usual they found it difficult to put a cannula in for the dye. So even now my arm is very bruised. That day I wore an old pair of slip on shoes thinking they would be easy to get off when having the scan. They have rubbed my heels badley. So I now also have bleeding heels. If I didn't laugh I'd cry.

I have a telephone call from the oncologist about radiotherapy on 23rd march. My nurse thinks I'll be starting it at the beginning of April.

Hopefully I can have my hair and nails done in May, already have an appointment. My birthday is near the end of May so I'm hoping everything is over and done with by then.

Started the Letrozole and at the moment I am not getting any side effects. Covid vac is on Thursday.

Good luck with everything and let's hope you don't need radiotherapy.

Take care

Litchielou x

Hi

[@Litchielou]‍ I hope you're doing ok with all that you have going on. Hopefully your sore heels are not quite so sore now. I know I shouldn't have but they did make me smile a little as it's the kind of thing I would do. Im guessing it wasn't fun at the time and probably felt like the last straw on top of everything else. I hope your bone scan results will be good, your appointment on 23rd goes well and you don't have to wait too long for your radiotherapy. Keep doing what you need to do to look after yourself and remember it's ok to sit still, shout, cry, laugh or whatever you need to do.

I was hoping for different but the oncologist agreed I should have radiotherapy. They explained it will reduce the risk of reoccurrence so makes sense. I had my planning/preparation appointment on Monday. I didn't even know that was a thing! Make sure you keep doing your exercises as you need to be able to put arm above your head for a good few minutes but it is supported on a stirrup contraption so wasn't too strenuous. They did a scan which was like being in a noisy, doughnut with red flashing lights, drew on me and did 3 dot tattoos (1 either side and 1 in the middle, like freckles). All to make sure everything is in the right and same position for every treatment. It didn't take long and everyone was lovely but it felt a bit surreal as they had the music from Grease playing in the background. Not my choice of music but John Travolta at his finest. I'm not sure I'll ever be able to hear the music from Grease again without thinking of the scan disco/tattoo parlour. It made me laugh! 
The advice is to moisturise the area twice a day and keep doing the exercises so I'm being good and doing as I've been told. It's now just a waiting game until radiotherapy starts on 25/03.

I've been for my routine smear test this morning and hoping that it will be ok.

I treated myself to sitting and doing nothing but watching a film this afternoon. Something I haven't done for a while. It's the little things that matter at the moment and it felt very self indulgent.

I'm still surprisingly tender post surgery,  feeling very up and down and really fatigued but that might be post Covid or more likely a combination of everything. Im still missing my friends and family but know everyone feels the same. I'm  trying to accept it's ok to have down days and stop telling myself off for feeling a bit pathetic at the moment. At some point I will stop and have another good cry but that just won't come right now.

@Mrs Boo I hope you are doing ok after your radiotherapy treatment. I'm guessing it may take a while to fully process all you have been through. Keep being kind to yourself and I wish you all the best.

sending every best wish to everyone who is going through this journey xx

[@JulesW]‍ 

Thanks for the info regarding radiotherapy. I'm still doing the exercises. How many days will your radiotherapy be over. That's why we go through this process to protect against cancer returning. Hopefully they have better music when I go for my planning. I remember once supposedly having a relaxing facial, the music was dolphins singing. I came out and wanted to scream .

This week I feel great as though I've never been ill and my heels have recovered glad I made you laugh. Laughter is sometimes lacking at the moment.

Listen to your body if it craves a rest do so. Cry and shout if you need. As one day this will be in the past and we can get on with the rest of our lives.

Good luck with your treatment and let me know how you get on.

Take care

Litchielou x

Hi [@Litchielou]‍ 

Hope you're doing ok. I hope your bone scan results were as good as possible, your heals have healed (!) and you might even have a date for your radiotherapy. I forgot to say they might need to do a mould at your planning session. Something they need to do to provide support for larger breasts during radiotherapy (not something I needed!)
I had my first radiotherapy appointment yesterday. I'm on the accelerated version so it'll only be 5 sessions with increased dose. It was ok and only took 20 minutes. I felt a bit emotional (caught me off guard as thought I had that in check) I think it just made it all feel so real again! But the process itself was all ok. I think I'm more fascinated by the science and technology behind it. Amazing stuff.

If you're driving or being driven to your appointment, find out if there is patient parking for radiotherapy. It is often free and some hospitals have dedicated spaces. I had to ring the hospital when I arrived and wait a few minutes in my car until they were ready for me due to Covid restrictions. Then went straight in, temp check, answered the usual Covid questions, was shown where to go, greeted by the radiotherapist who did the usual name, address, date of birth checks and then straight in to get changed. I had to keep lower clothes on and put gown on tied at the back. I have learnt to take a fold up bag with me to put my clothes in and to take as little as possible in with me so I can easily take everything with me into the treatment rooms. I went straight in for treatment. They were lovely, 2 radiographers who again checked name, address, date of birth and then took a few mins to move me into the right position on the bed, arms supported in stirrups and foam wedge under knees, lined up with the tattoo dots, They then left the room and the treatment started. They explained they can still see and hear you and said to raise a hand if I needed anything, It's just a big machine (mine was a bit like an x-ray not a tunnel like a scan). It slowly circles around you. It gets near to you but does not touch. Really didn't feel anything at all. Then the radiographer came back into the room and explained I needed to wait until they said to get off the bed because it is raised up so I waited another few seconds and then was free to leave and get changed again. I was surprised how quickly it was all done. The only thing I had to do was keep still. They were playing Surfin' USA so I was very focused on not tapping my feet or jiggling to the music! I was in and out in about 20 minutes. 1 down and 4 to go
I fell asleep yesterday evening after treatment and then didn't sleep well last night but I'm sure that's an emotional thing rather than any physical side effects. They said the physical side effects, if we have any, peak about 10 days after the final treatment as there is a cumulative effect. Not everyone gets them so I'm keeping my fingers crossed for us all.

The top advice seems to be to keep doing the exercises for arm movement and to help with the scar tissue, and moisturise, moisturise and moisturise making sure you go around to your side and back as far as you can reach, up towards your neck in a vertical line across from the armpit to the centre of breasts as this is the area that will be zapped. I've been using E45 and they said that is fine but it would also be ok to use any usual moisturiser that isn't overly perfumed. Some hospitals will advise specific creams like dermol. Only a thin application when you get up on the day of treatment and then as much as you need after, applying gently. Ok to shower as needed. Advised to pat the area dry after a shower not rub. I was told it's ok to use usual shower gels, deodorants as long as not too perfumed but to advice from the team if it becomes very sore or blistered which can happen occasionally. They can then advise or prescribe creams.

I'm back again today for another session and then the same again on Monday to Wednesday next week.  They are doing my sessions on 5 consecutive days but not at the weekend (or on bank holidays). They said my Wednesday appointment will take a little longer as I will also have a review meeting to discuss side effects and any further treatment (I'm hoping both will be none!) I'm looking forward to it all being finished.

I do hope you're doing ok. Take care xx

[@JulesW]‍ 

Thanks for your reply and advice to what will happen. I haven't got big boobs so I don't think I'd need a mold. My heels took ages to repair. I'll be wearing sandals next time as the unit is a long way from the front door. The parking is only £1.50 per day and the first 30 minutes is free.

I'm having my planning meeting on Wednesday 31st march. I do know that when it starts my radiotherapy will be over 3 weeks Monday to Friday. I presume it's to protect my heart as the cancer was in my left boob.

I've already started to moisturise and drink more water. (Side effect is getting up more in the night)

I'm hoping that everything is over by the middle of may as that's when I'm having my hair cut and coloured . Just got to have a Bisphosphonate treatment after the radiotherapy. 

Not had any alcohol since this has started. My son and daughter bought me for mother's Day a bottle of champagne to celebrate the end of my treatment so I've got something to look forward to.

Good luck with the rest of your treatment let's hope you have music that won't make you want to dance. 

Take care litchielou x

Hi [@Litchielou]‍ 

Hope your planning appointment went well, you're doing ok on the meds and maybe even have a date for your radiotherapy.
I've now finished my radiotherapy. It was ok and I soon got into the routine. The music didn't improve Surfin USA, Grease, Spice Girls and Cher but all were a good distraction as was the bluebell picture on the ceiling. My emotions were up and down but I learnt to just roll with them. It was easier once I knew where to go and what to expect. They used the same machine everyday so it was always in the same place. I saw 2 different people every day but all were lovely. It only took about 20 minutes each day. I had a review appointment on the last day but this was simply a phone call whilst I was sat in the car park waiting to be called in for my last treatment. Normally it would be face to face but Covid restrictions meant it was another phone call. They simply asked how I was after radiotherapy, I answered ok and that was the review all done. 
I thought I'd be elated on the last day of radiotherapy and celebrate but to be honest I felt strangely a bit flat. Everywhere was shut due to Covid restrictions so I just went home and wasn't quite sure what to do. The radiographer joked about having a bottle of something nice after the last treatment but I'm still completely off alcohol (not a bad thing really) so I just went home and had a cup of tea. I expect everybody feels differently at this stage.
My boob now has a large faint brown rectangle (like a mild tan) in the area that has been treated stretching from under my arm, across to the mid line and down to just under my breast. It's barely noticeable but I'm oddly aware of it. I felt ok for a couple of days after the radiotherapy just sleeping a little more but then found I get waves of complete exhaustion and fall asleep a lot and still sleep all night. I also feel nauseous on and off but I have always felt that when I get over tired and it goes when I sleep. On day 4 post treatment I also got a very itchy rash/lots of little spots over the whole area which I'm slavering with even more E45. It's still itchy and spotty now but is much better than it was and the cream really cools and soothes the itch. I bought 3 x 350g tubs and have used one and a half so far. The hospital said they can prescribe creams if needed but I have found E45 is working for me.
My wound from the op in Feb seems to have healed nicely but is very hard. It is indented which means there's like an overhang of skin above it so it looks more of a V shape. I know this will all fade in time and feel surprisingly at ease about it. My arm movements are good but feel a bit stretched at the extremes so I'm still doing the exercises. My nipple remains surprisingly very tender.
I happily don't think I need to go back to the cancer hospital but have been told I will have an appointment with the breast care unit in 6 weeks time but do not have a date yet. I'm not sure what that is for but am guessing it's a catch up post radiotherapy and may well just be another phone appointment.
I already have an appointment for my yearly review next Feb and will now have reviews/mammograms once a year for 10 years. I think the frequency of these reviews vary depending on hospital/health board.  
I've also happily had my first Covid vaccine (Pfizer). My appointment came in the middle of the radiotherapy sessions. I checked with both the cancer centre and the vaccine centre and was told it was ok to go ahead with it.
I went for a long walk on the beach on Easter Sunday and felt really good for the first time in quite a while but then promptly slept for hours and felt exhausted again. I know the tiredness and rash will pass and am optimistic about the promise of better times ahead. 
I hope you're doing ok. It's such an odd journey. Take care x

[@JulesW]‍ 

Thank you for your message. My bone scan only showed wear and tear of my feet. Not sure what that means as I've never had any problems but I never had problems with my spine which showed up on the CT scan.

I started radiotherapy last Friday 2 down and 13 to go. I'm getting ready for my appointment this afternoon. The one on Friday was quite quick more time was getting me in the right position. Yesterday was strange I was diagnaly under one machine and one at the side. They then took photos and then I was straight under the machine for another 10 minutes. I asked if that was usual but didn't get a straight answer. I might ask again today for an explanation. Last appointment will be 29th April. On the 28th I have an appointment with the consultant.

Like you Ive been smoothering e45 cream all over my chest, boob and under my arm. I'm very lucky that my arm has very good movement.

With regards to the tablets I was fine with the ones given at the hospital (cipla brand) but was given the accord brand from my GP and I had horrendous side effects. Freezing cold and uncontrollable shivers, urine infections and terrible headaches. Spoke to the GP and he gave me another prescription for Cipla. My local pharmacy are very good ringing around the rest of their shops and have got me and put to one side a years supply with my name on, as it's not one that they normally stock. They had just been taken over by another company now they have 230 shops where as before they only had 2.

I was given the astro covid jab 3 weeks ago and my next one is 28th may. More importantly I have an appointment for my hair to be cut and coloured 19th May and a manicure on the 20th. It's my birthday on the 21st and my son is having a BBQ for me to celebrate. I've promised I'll have a glass of champagne to celebrate the end of the treatment. I'm sure after having no alcohol since December I'll be in bed by 8.

Yesterday was 19 weeks since I was diagnosed. I can understand that you now feel lost as it's been a very intense time. Life is now on its way to get back to normal. What ever you do live life to the full. We now understand that sometimes it can change in a blink of an eye.

Take care and if you ever want or need to just chat I'll be waiting

Lind x

[@JulesW]‍ 

Thank you for your message. My bone scan only showed wear and tear of my feet. Not sure what that means as I've never had any problems but I never had problems with my spine which showed up on the CT scan.

I started radiotherapy last Friday 2 down and 13 to go. I'm getting ready for my appointment this afternoon. The one on Friday was quite quick more time was getting me in the right position. Yesterday was strange I was diagnaly under one machine and one at the side. They then took photos and then I was straight under the machine for another 10 minutes. I asked if that was usual but didn't get a straight answer. I might ask again today for an explanation. Last appointment will be 29th April. On the 28th I have an appointment with the consultant.

Like you Ive been smoothering e45 cream all over my chest, boob and under my arm. I'm very lucky that my arm has very good movement.

With regards to the tablets I was fine with the ones given at the hospital (cipla brand) but was given the accord brand from my GP and I had horrendous side effects. Freezing cold and uncontrollable shivers, urine infections and terrible headaches. Spoke to the GP and he gave me another prescription for Cipla. My local pharmacy are very good ringing around the rest of their shops and have got me and put to one side a years supply with my name on, as it's not one that they normally stock. They had just been taken over by another company now they have 230 shops where as before they only had 2.

I was given the astro covid jab 3 weeks ago and my next one is 28th may. More importantly I have an appointment for my hair to be cut and coloured 19th May and a manicure on the 20th. It's my birthday on the 21st and my son is having a BBQ for me to celebrate. I've promised I'll have a glass of champagne to celebrate the end of the treatment. I'm sure after having no alcohol since December I'll be in bed by 8.

Yesterday was 19 weeks since I was diagnosed. I can understand that you now feel lost as it's been a very intense time. Life is now on its way to get back to normal. What ever you do live life to the full. We now understand that sometimes it can change in a blink of an eye.

Take care and if you ever want or need to just chat I'll be waiting

Lind x

Hi, Although it does seem like a strange thing to say to anyone, I'm glad to hear your radiotherapy has started. It's good things are progressing.
I can't explain the different position you were in yesterday as I had the accelerated 5 day course which is different. I was in the same position everyday. I shut my eyes to relax at times so was not always aware where the machine was. I'm sure there's a good reason and they know what they are doing but you are right to ask if it's causing you any concern. Hopefully they will provide a more useful explanation for you today.

I found the whole thing very surreal and think I felt a different emotion everyday. Sometimes I felt strangely empowered and completely in control and other times a complete mess. I have realised both are ok but I prefer the first one!
What a horrible experience you had with your meds. I'm glad that has been sorted for you and that the pharmacy have sourced the right meds that you need for the year ahead.
I hadn't counted the weeks or realised that we were diagnosed around the sabe time. It's been 20 weeks for me and then I had Covid a week later just to add to the mix. In some respects it feels much longer ago but also like time has stood still. It felt good to count the weeks and has helped me put it in some perspective.

Lost is a good word to describe my current feelings. I'm not usually someone who sits still but I'm finding it helpful to rest quietly, sleep when I need to and take time to process the last few months. You may find you need to do the same or you may feel differently. Listen to your body and do whatever you need to do but be prepared to feel tired and rest when you need to. The full effects of the fatigue seemed to hit me about 10 days after my radiotherapy finished.
I've now realised I need to get back to some normality and intend to go back to work on Monday. I surprised myself by taking time off in the first place and also by agreeing to a part time return with a view to increasing hours and days. I can see this has changed me. Hopefully we'll all be a bit wiser and kinder to ourselves
You are right things really can change so quickly and we all need to enjoy ourselves. A big cheer for you having an appointment to get your hair and nails done and a celebration for your birthday and the end of your treatment. I hope you enjoy your birthday and the champagne. 

I'm looking forward to a week away with family in a Welsh cottage in June. Fingers crossed restrictions will allow it. Things are looking hopeful.

Thank you for your support and do message to let me know how you get on if you are able/have time. I too am here if you need to chat.
Good luck with the rest of your treatment. There will be better times ahead xx

[@JulesW]‍ 

Just got back from my appointment. Today I was lucky that 2 people hadn't turned up and so I went in early. I asked about the machines and they explained everything to me. I had today the same treatment as yesterday. Friday was just to make sure that they were correctly lined up. 

Enjoy your holiday to Wales in June. We normally go Tenerife in November but as we are retired can book anytime up to the day before. We are looking to going either somewhere in Cornwall or Brighton in September. Went to Newquay, St Ives the year before last for the first time and loved it.

Take time in returning to work listen to your body.

Take care

Lind x