[@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
 

[@Litchielou]‍ 

Thanks for the advice. I had my pre op assessment on 14/01. The nurse was very stressed and offloaded her difficulties and the doctor not available as he had Covid so I came out with more questions than answers. I understand things are very stressed and stretched for them all especially at the moment so didn't want to bother them but took your advice and called the nurse today.
Thank you, of course the nurse was lovely. Feel daft for not doing it earlier! She said no Covid test before op as I've had Covid within last 90 days. (Thankfully recovered as it was horrible). She also said both procedures will be done on 2nd instead of over two days which is a relief.
I also had a (distanced) chat with my husband. He'd realised I was struggling but was at a loss at what he could do. I guess it's tricky for them too. 

Thank you so much for your replies. You have helped me more than you will ever know.

Good luck with your op tomorrow. Hope all goes well. If you think of it and get a chance, let me know how you get on. I'll be thinking of you x

Hi Jules,

I have just read your post and wanted to offer you support. I was diagnosed in May last year, Grade 3 4cm tumour. Weak receptors HER 2 neg. I had chemo first then lumpectomy in December. 
I was so scared of the operation, so can really empathise with you here. But it was nothing at all like I feared. 
 

What kind of op are you having? Are they doing a lymph node biopsy at the same time?

What I'm hearing though are the underlying problems you are having thanks to the pandemic. It is so hard having cancer treatment when you can't get a hug from your friend. 

It feels lonely and isolating. You cope the best way you can. Your cancer-your way! Staying positive helped me hugely and I believe helped saved my life. 
 

Reaching out to others in my position was the best thing I did. You're doing that here. 
 

You have had somegood advice here. Let me know what you're having done and if it's similar to me I'll tell you my experience. It really was good snd I recovered very quickly. 
 

Take care.

Mrs Boo xxxx 

Hi Mrs Boo,

Thank you for replying. You sound like you have been through a tough time and it's kind of you to take time to reply. 
I really have been feeling quite pathetic and I think you have hit the nail on the head that it is more likely to be due to the pandemic restrictions and isolation. Like so many, I am really missing my friends and family and hugs.
I have DCIS (ductal carcinoma in situ) non invasive and low grade. I'm one of the "lucky" ones compared to so many on here and know others are having to cope with much worse.

The op is breast conserving wide area local excision. I've been told it's like a lumpectomy but they have to put a wire in first as they can't see or feel the area that needs to be removed when they operate. I really don't know anymore than that as was diagnosed in Nov, advised need surgery but no theatre space and sent home to await follow up in 3 months. I'm presuming no lymph node biopsy as it's non invasive (?)

I'm lucky to now have a date for my op 02/02. I was told to think of questions for the doctor at my pre op assessment appointment and at first I didn't have any but by the time of the appointment on 14/01 I had lots. I guess the doctor would've explained the procedure at that appointment but unfortunately, half way through my pre op appointment, I was was told the poor doc had Covid, no one else was available and I was just, understandably but abruptly sent home. It can't be helped and the breast care department were having to deal with so much. The nurse I saw seemed so stressed and virtually gave me her life story. She was dealing with a lot more than me but it left no chance to find out about the procedure so I've stupidly asked Dr google which of course, hasn't been entirely helpful.
I'm usually such a positive person and just get on with things no matter what life throws at me but I have to admit this has floored me a bit. I know it's just a blip and all will be ok.

I am sure you're right and I'm probably just missing friends and family due to pre op isolation (14 days before and 3 days after) and of course, all the Covid restrictions before that. 17 days is such a short time but it feels like time is standing still. I feel a bit daft really. 
It's good to hear you recovered quickly and I hope you are doing ok in these difficult times

All the best

Jules x

Hey,

You are NOTstupid or pathetic. You are a human being trying to make your way through cancer planet withoiut a map!  And...on the back of a global pandemic. 

I had exactly the kind of op you are going to have. My tumour was high grade but loved chemo - so after 8 cycles of chemo - June to Nov last year, the solid disease had been abliterated! This was very good news. I had a number of lymnph node biopsies too - all negative , so like you feel I am one of the 'lucky ones'. That label we catergorise ourselves under suggests we are positive and optimistic, as let's face it, you are not lucky if you have a breast cancer diagnosis. Worth flagging up!

Anyway, the op. I went in the day before to have the wire inserted. This does not hurt at all and lasts about 10 miutes. They gave me a local anesthetic. The wire goes in with the help of an ultra sound and/or mammogram. This is to guide the surgeon to where the tumour is/was. Mine had gone so they were aiming to get the wire as close to the tumour marker that was still in my breast. The wire is in then taped up and I went back to my ward. I was first up the next day. This was so scary for me. I had never ever had an operation and being a control freak, hate not knowing what is to come. As it is COVID, you are masked up and wheeled down empty corridors. It feels surreal but was done safely. The team in the operating theatre explained what was going to happen. It took about 5 minutes in this bit before I went into main theatre. I was told I was going to have a candula fitted which went in well. Believe me after 8 cycles of chemo I have now began to hate these bloody things! But it was fine. Then the pain relief and morphine go in. You are told you will feel a lilttle giddy - I did. Then seconds later they administer the anaesthtic - you are told to count down from 10....of course you don't as you are out of it!  The operation took less than an hour. This was longer for me as they were doing another lymph node biopsy too. The results take baout 10 minutes to come back. If they had found cancer in those they would have removed them all and I would have had a drain. Luckily again they were negative so only 2 were removed to check. I still have the rest! 

You are low grade so I am expecting this means you won't have this done. 

The surgeon took a 2cm tissue sample from me to be tested at the lab for cancer cells. These results take about 3 weeks. Again 'lucky' here as I had no cancer residue at all and was told I had a complete pathological response. You want to hear this! 

I came round from the op to find I had been glued back together. No stitches or banadages to be seen. I was not sore at all and felt nothing. Struggled to use my arm to pull myself up but nothing else. By the afternoon I was sat up marking assignments for my students using both arms perfectly well. 

I had brusing, yes, lots of it - but very little soreness. Paracetamol was fine for me. I did the exercises and by the first week, it was like nothing had happened to me. I did wear a comfy bra - no wires - this I would advise!

Take your time - we all heal differently and manage your expectations kindly. Give yourself permission to feel rubbish and fed up and scared. These feelings pass. You will find the resilience you need to get over this next stage on your journey. Focus on the end result - keeping your life and getting back to it! It will happen and very soon if you are in next week. 

I wrote and published a blog to make sense of it and I have out the link here. Some of this might be helpful for you. 

Blog | The Counsellors Cancer

You are doing marvellous and have strong support there. I can see that. 

Accept this is going to be a bit tricky but know you will cope and manage and that COVID won't be around forever.

Take care and good luck xx 

Thank you. You have answered so many of my questions by describing your experience. It doesn't sound pleasant but bearable and you're right it will be sorted soon. 
I have started reading your blog, only a couple of your entries so far as have been working today but will read more. I have already cried, not like me and I think it was some for you and if I'm honest, some for me but i needed to do that and strangely already feel better for it. I have also smiled and even laughed which isn't what I expected from a blog about cancer. It is well written. Thank you for sharing it. 
I have definitely been having a wobble and you have really helped me understand that it's ok to do that. Thank you for being there and taking the time to reply. 
Wishing you all the best x

[@JulesW]‍ 

Had my operation yesterday it was a longer than I thought. Today I feel fine. Taking the painkillers and have started the exercises.

I'm sure you know this already but a few tips which might help.

No nail polish on fingers and toes. Remove hair from armpit. No Deodorant. Or perfume.

Loose fitting clothes. Definitely a front fastening bra and top.

Make sure you drink water and have something to eat after the operation. You need to pee before they let you home.

My journey was an hour down winding roads. Have a couple of bags in case you feel sick.

And after you have put the seat belt on have a soft cushion under the part that goes across your body this makes it more comfortable.

Good luck for your operation will be thinking of you.

Litchielou x

[@Litchielou]‍ 

Hi,

So glad you're feeling fine after your op yesterday. I was thinking about you and hoping all would be ok.
Thanks for the tips - all really useful and most I hadn't thought of!

I was so all over the place, I didn't know where to turn and reached out here. Thank you so much for replying. I'm feeling a lot more settled now I have more of an idea what to expect and some useful hints snd tips to.

I will always be so grateful to you and Mrs Boo for responding. You have helped me more than you will ever know.

Good luck with your recovery going forward

Xx

Hello!

Really happy to read you're feeling more settled. Half the battle is getting your head in a good space and knowing what to expect. I'm one who wants to know everything! 
 

I wanted to write about my experience to support other people with their wobbles. I had hundreds. Still do. But I now know I can manage them and move on. As you will in such a short few days. Thank you for your feedback too. Much appreciated. 

Enjoy your weekend. Kick it out of your mind until you need to pack! You've been given some great practical advice too. Take extra food, snacks and drinks. I was starving! Plus you aren't allowed out your room due to COVID so can't go to the shops there. 
I will be thinking of you on Tuesday. Let me know how you get on. You'll be surprised at how well you'll cope. Promise xx 

Hi Jules W,

I was just wondering how your op went? I have been thinking about you.

I do hope you're feeling more positive now and looking forward.

Take care. 
 

Mrs Boo xx

Hi Mrs Boo,
The op went well and I feel much better about everything now. 
It was a bit surreal being in hospital with all the Covid restrictions but everyone was amazing. I was met at the door, escorted to a single room and well looked after throughout. The staff are clearly under a huge amount of pressure but I cannot praise them highly enough and I received the best care

The post op isolation was weird but I'm now passed that and can be in the same room as my hubby and sons again. It really is the little things that are the most important.

I feel fine post op - a bit sore but nothing unexpected. I'm doing my physio exercises as instructed.

My results are on 18/02. I'm hopeful all will be well and it will just be a question of monitoring but also prepared for further treatment if needed. I really know I have been very lucky. 

My head is in a much better place and I feel very positive going forward. Thank you so much to you and [@Litchielou]‍ who helped me with that.

I read your blogs. Thank you for sharing your experiences. It certainly is a rollercoaster ride of emotions but helped me and I'm sure others will also benefit from them. I hope you are now doing well. 

All the best

xx

Hi Mrs Boo,
The op went well and I feel much better about everything now. 
It was a bit surreal being in hospital with all the Covid restrictions but everyone was amazing. I was met at the door, escorted to a single room and well looked after throughout. The staff are clearly under a huge amount of pressure but I cannot praise them highly enough and I received the best care

The post op isolation was weird but I'm now passed that and can be in the same room as my hubby and sons again. It really is the little things that are the most important.

I feel fine post op - a bit sore but nothing unexpected. I'm doing my physio exercises as instructed.

My results are on 18/02. I'm hopeful all will be well and it will just be a question of monitoring but also prepared for further treatment if needed. I really know I have been very lucky. 

My head is in a much better place and I feel very positive going forward. Thank you so much to you and [@Litchielou]‍ who helped me with that.

I read your blogs. Thank you for sharing your experiences. It certainly is a rollercoaster ride of emotions but helped me and I'm sure others will also benefit from them. I hope you are now doing well. 

All the best

xx

[@JulesW]‍ 

It's been a hard 2 weeks since my op. The first day was fine but after, all I did for 5 days was cry and I couldn't tell anyone what I was crying about. Started my exercises again and I'm getting more movement in my arm. I'm wondering how long does it take for the arm to get back to normal. The pain I have now is in the muscle of my left arm the BCN thinks the muscle was pulled during the operation. Also my left boob feels like a block of ice when it's really cold.

I was given my results on Friday 5th they are referring me to a hospital in  Manchester for chemo. Over the 2 operations they removed 30 lymph nodes and 4 of these had cancer. Yesterday I had a CT scan.

Onwards and upwards for the next part. I'm just taking one day at a time.

Take care everyone

Litchielou x

Hi [@Litchielou]‍ 

i've been thinking about you and wondered how you were. You helped me so much when I was really struggling. I'm sorry to hear you are going through such a tough time post op. 

I think we all cry and don't know why. It seems to be part of this process and is definitely allowed. You have already been through so much. It's really positive that you have spoken to your BCN and that you have the strength to do your exercises.

Good luck with the results for you CT scan. It sounds like you are overdue some good news.

Good luck also with your chemo. One day at a time is a good way to stay on top of things. I'm sure the path ahead will be clearer once you have more information from the specialist hospital in Manchester. You will have the best care there

 I hope Mrs Boo won't mind me saying  you could try reading her blog. Just Internet search Blog | The Counsellors Cancer. She had 8 cycles of chemo from June to Nov. They are written with raw emotion and some humour. I laughed and cried reading them but they helped me.

I cannot imagine how you are feeling and can only offer hugs and best wishes.

Take care and be kind to yourself

xxx

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