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Confused, lonely & worried

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Re: Confused, lonely & worried

Hi Louise, 

Thank you! It went well by all accoutres 2 lumps removed and 3 nodes. Sore & tired and have been very groggy from the anaesthetic but coming round now. I'm allowed a shower today (72 hours) which will be marvellous!

How is your pre-op planing going? Do you have a date yet? Fingers crossed it is soon. You doing ok?

Jo xxx

 

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Re: Confused, lonely & worried

Hi Jo,

I’ve now completed 16/20 radiotherapy 🎉 Today was the first boost session. It’s been very straightforward. Wishing you all the very best for your surgery, another step closer to the finish line.  Hope you’re home and recovering soon. 
Mel xxx 

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Re: Confused, lonely & worried

Hi Jo,

I wanted to wish you luck today (I hope I’ve remembered the day correctly) and say I’m thinking of you, and wishing you a hopefully problem free op and recovery. Best wishes, Louise 💐🤞

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Re: Confused, lonely & worried

Hi Mel, Just checking in on you. How is radio going? Not long to go now I hope. Jo xx

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Re: Confused, lonely & worried

Thank you, that's really lovely of you. I might take you up on that number once I can stop the "crying on speaking" thing. Typing doesn't evoke the same emotions thankfully!

Sounds busy at your house. How lovely to have them around you though at the moment. I'm lucky our 2 boys have been here too and will be for a while. One is starting an apprenticeship and the other off to St.Andrews in September. I bet you've got warmer weather down there, I'm up in the pennines in Yorkshire! It's as cold as March!

Shame about your husband's company not being supportive, if i hoped for anything from this pandemic it is that people & companies show more compassion and understanding and value life & living more! Like you say he can't really come in anyway at the moment so here's a huge hug from me... HUG!!! to take in with you.

Stay strong xxxx

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Re: Confused, lonely & worried

Ah that's good to know, Claudia. I'm an ex- weekend rugby & footie mum so hopefully I'll be ok too. Fingers crossed the anti-sick meds keep doing their job 😊

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Re: Confused, lonely & worried

Thanks for your supportive message Jo. I really feel for you having to isolate, that must be so hard. 💐 If you ever want to chat outside your family please message me. I’m happy to give you my number if easier, just ask.

All my children, 25, 23, 19, 19, and 13, have been at home throughout lockdown. My husband has now gone back to work in London (we’re in Suffolk), and one daughter works out of the house currently (Key worker), the other three are still home from uni, school, on furlough and one working from home. None of us have had Covid so with possible chance of infection from my husband and daughter I shall probably need to do the same. I’ve been mainly staying at home anyway since the news to minimise my risk as I expect (hope) an op will be imminent. 

I was definitely aware that I wasn’t breathing properly during my MRI and I could see how many would do the same. Autopilot as part of the ‘must stay very still’ instruction, I think I was subconsciously trying to do the most shallow breaths possible. 

My husband has rearranged work to come tomorrow (they’re not exactly a flexible or supportive company), but I believe they’re still enforcing the no partners rule, so I’ll have to do the actual consultation on my own. xx

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Re: Confused, lonely & worried

My very best wishes to you Claudia, we’re all trying to get to grips with it all, and you and everyone on this ‘journey’ we’ve unfortunately found ourselves on are in my thoughts.

My now grown up boys have always been keen rugby players, one still plays for uni, so many times I persuaded my husband to go and watch instead so I could stay at home in the warm, so I’m not so hardy 😉 😊 I have wondered about the cold cap - it’s academic at the moment because I don’t even know my treatment plan for certain (should find out tomorrow)  but I understand there will be chemo. I have extremely thick, long, curly hair...it’s always been a big part of my identity. I know it’s only hair, so I’m trying to accept that now so it’s not such a big deal if/when it happens. 

Louise x

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Re: Confused, lonely & worried

Hi jo

No straight to chemo then op will come afterwards. I have the anti sickness tablets which is probably that what is stopping me from actually being sick (thank goodness) I did use the cold cap and found it manageable. All the cold Saturday mornings watching my boys playing their football matches have helped me cope with the coldness 😂😂

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Re: Confused, lonely & worried

Hi Claudia,

Oh you poor thing. It must be so hard, I'm so sorry you are going through this. I'm so sorry we all are for that matter!

Were you scheduled for surgery originally then or did they just put you on chemo straight away? Have they given you anti-sickness tablets? Did you have the cold cap? 

Take care, Jo xxx

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Re: Confused, lonely & worried

Unfortunately I won't know about radio vs chemo until after surgery as the lumps are grade 3.

Sorry you were in pain after the MRI, I did have some sternum pain after and the radiographer said that often you don't breathe properly and become more rigid than normal so it almost forces your bones on the hard plastic. I hope it is subsiding for you now.

The weekly meetings thing is hard if you miss one isn't it. Feels like a lifetime in between. But tomorrow you should get lots of results and hopefully a good, clear plan forward.

The hardest thing emotionally is the self isolating away from all my family. They asked me to do it from July 1st but then my surgery date was july 15th, they had to move it as I had to have the other biopsy & ultrasound and the NHS changed the guidelines. Obviously I chose to isolate from everyone and you may not have to but I wanted them to get on with their lives & work as it will get harder later for them when they will need to be with me more. So I am nearly 2 weeks in and it's hard not getting hugs or even being able to have dinner together. I'm looking forward to those. 

Best of luck for tomorrow Louise, I know it will be hard. Will you have anyone with you? I'll be thinking of you. ❤️

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Re: Confused, lonely & worried

Hi jo22

They discovered a second cancerous lump during my ultrasound scan which wasn't detected on the mammogram I'm so pleased they are thorough with everything. I had my first chemo session yesterday so I'm just waiting on the side effects to hit me 😬 so far I've had sickness feeling and dizziness xx

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Re: Confused, lonely & worried

Sorry to hear the positive result with your second lump - I suppose if trying to find a positive is that it’s smaller, you hopefully fully know now what you’re dealing with and they can get them both next week. It will feel so much better mentally to know they are out, I imagine. 💐 Am I right in thinking you will then start radiotherapy?

My MRI wasn’t great, although the actual scan itself was fine, but even though I didn’t feel I was in a bad position I started to get quite severe rib pressure/pain (on good side) about half way through, I just wanted to get it finished rather than have to go back as I live over 40 miles from the hospital, and I was worried that rather than just reposition they might not finish that day so I gritted teeth and managed to finish. I’ve had horrible muscular pain since, just starting to ease now thank goodness. The GP gave me some tramadol, and thinks it’s an inflammatory reaction. Weird! 

I did phone the breast care nurse last Fri about the pain and results, she had nothing she could tell me. Apparently they discuss/plan everything at a weekly meeting on Tuesdays, consultant then in clinic on Wednesdays, my MRI was late Tues 7th afternoon, which meant unfortunately I wouldn’t be discussed until today and am in the clinic tomorrow. All results and treatment plan discussed tomorrow I assume, though I don’t really know for certain and also don’t know what other tests may be needed for any more confirmation, or checking eg lymph nodes, so will just see what they say. I know I’m also waiting on HER test. I hope by tomorrow I have a relatively clear picture.  

I found it sunk in immediately for me, but having known a couple of weeks now but not having any further info at all I’ve gone a bit numb with trying to suppress my emotions - I think it’s just to protect myself so I don’t cry all the time as I found the first couple of days of shock and crying, and my family crying, hideous and exhausting. I can’t keep doing that so I’m just trying to be as ‘normal’ as possible. Are you and family doing okay emotionally? Xx

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Re: Confused, lonely & worried

Hi Louise, 

Lovely to hear from you, how did your MRI go? Good I hope. You're absolutely right waiting is a nightmare but I have found that it does give you time to gather your thoughts, do some reading & think of questions as the journey progresses. 

Yes I got more results on Friday & a chat with my nurse yesterday. I do have a 2nd cancerous lump only 8mm this time (1st one is 16mm) so they will remove them together next weds. Just waiting to find out if the 2nd one is HER+, the 1st one wasn't.

Do you have any idea what your treatment plan is yet or will that all be discussed tomorrow? I'll keep all my fingers and toes crossed for you. Let me know how you get on xxx

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Re: Confused, lonely & worried

Hi Jo,

I was wondering how you were getting on, I remembered you said you were waiting for more results? Everything seems so slow, the waiting is so hard isn’t it? I have my MRI results tomorrow and see consultant for my plan, scared witless obviously. 

Louise x

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Re: Confused, lonely & worried

Hi Jo,

my surgery went well. I came home with one drain which was removed the next day by the rapid discharge team. I only took paracetamol on the first day. I think part of it is that they cut the nerves during surgery so you can’t really feel anything for a while (the feeling returns slowly) The wounds have healed really well and radiotherapy is going well, eight done and skin still behaving 🤣

It is all very doable and you will soon be where I am soon.  
best of luck and hope you’re not too bored! 
Mel xxx 

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Re: Confused, lonely & worried

Hi Mel,

Crazy rules around covid eh?! 🤣

I'm so pleased you're getting through your radiotherapy without too much trauma to your skin, I heard it can get sore. How was your surgery? IS that healing well too?

Jo xx

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Re: Confused, lonely & worried

Hi Jo,

there seems to be ever changing rules with Covid which although totally understandable isolate us from the people we need the most. I was admitted 24 hrs before surgery for Covid testing. The NHS was using a private hospital for breast surgery and there were no visitors allowed. Dropped and collected from the car park. It was the longest 24 hrs ever, alone in a private room. The amusing bit was that on the morning of surgery I had to go to Guys Hospital to nuclear medicine and to have the guide wire inserted. Hospital staff walked me through London Bridge station from the private to NHS hospital... 🤣🤣

There was no mention of self isolating before radiotherapy although I have to say I’m not going out much. So far so good and my skin is behaving. Today was treatment 5 of 20 so I’m a quarter of the way there. 

best wishes 

Mel xx 

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Re: Confused, lonely & worried

Hi Mel,

Thanks for your message, I hope things are going ok for you? How is the radiotherapy?

Yes I was told exactly the plan that you had which i was fine with and then on July 1st it changed to a supergreen plan where either I, or all my family, must self isolate and I cant have any appointments during that time till I go for surgery. Then I have to go to the hospital alone where they say I will be met in the car park and gowned & masked to go in to the supergreen ward in the hospital. Then they will call my husband when I'm finished and delivered back to my car. At that point my husband can stay with me but we both have to isolate for 14 days before radiotherapy starts. It all seems very over the top but I guess they know what they are doing?! 😳 Phew! Sorry for the long reply...

 

 

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Re: Confused, lonely & worried

Hi Jo,

I had surgery in May and had to self isolate for two weeks before surgery. Although I stayed at home I didn’t isolate from my husband or children and my husband still went to work every day (in a hospital!) You will have a Covid test before surgery so I can’t see the point in isolating from the people you live with. You need to think of your emotional health too. 
I’m having radiotherapy at the minute and there is no self isolating or Covid test. It’s done at a cancer centre and I have my temperature checked at the door and am given a mask to wear while inside the building. It feels very safe. 
best wishes

Mel xx

 

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Re: Confused, lonely & worried

Thanks Shi, I guess I'm not used to asking for help but things may have to change 🙂

Thanks for your support and kind message xxx

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Re: Confused, lonely & worried

Thanks Stayzen,

Yes my hospital seem extra cautious, which I suppose I should be grateful for. And thanks for the advice re: lumpectomy & mastectomy, I will speak to my nurse. I am noticing you become more knowledgeable as the days go on as you use resources like this website to understand the diagnosis and treatment. And forums are invaluable for reassurance and support! Thanks so much!

Jo xx

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Re: Confused, lonely & worried

Hi Jo22

the rules around covid seem to be different in each hospital. I had to self isolate the week before surgery (hubby was able to stay in the house as well so we didn’t have to isolate from each other), but nobody said anything about isolating before or during radiotherapy - although to be fair we aren’t really going anywhere other than for walks locally. I think it’s worth checking with your Breast Cancer Nurse what they mean by isolating as everybody seems to have a different interpretation. On the lumpectomy v mastectomy one of the things they take into consideration is the size of the tumour relative to the size of your breasts, so possible to have same diagnosis but different surgery. It’s worrying going through treatment, without the extra worry of isolating. Take care x 

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Re: Confused, lonely & worried

Hi hi we are all here as much or little as you need us, it’s your journey do what’s right for you every step of the way ❤️ There is always 👭 here and on the phone number at the top and your team are there for you too ❤️ 💕💕Shi xx

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Re: Confused, lonely & worried

Thanks Shi, yes I do feel like there are multiple methods of dealing with this. Great advice re: front button pjs thank you! And yes maybe a call to my team & the nurses on here might be a good idea, I don't often ask for hep but think I might have to with this. Much appreciated 😍

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Re: Confused, lonely & worried

Thanks Claudia, I'm going to ask about chemo or radio first as this may be an option too. Thanks for the info. xxx 

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Re: Confused, lonely & worried

Hi jo ❤️ Everyone if different and your consultants and teams will ensure your treatments are specific to you for your treatment plan ❤️ It’s easy to think well that sounds same as mine so why is their treatment different. It’s good to be on the threads and always talk about treatments because you can then ask your teams questions you might not have thought about ❤️👍 my surgeon had me wash with hibiscrub for a few days before operation, perhaps that’s something you can ask about. You will need short sleeve front button pyjamas too and dressing gown with pockets if you are having bottle and drain after op, please read surgery threads on here and please do phone the nurses on here too and discuss anything with them, also speak to your team and let them know isolating from your family is hard to see if anything can be done that could help you with this while keeping you safe prior to op. Sending ❤️👭💕💕Shi xx

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Re: Confused, lonely & worried

Hi jo22

I was diagnosed on 13th June and was advised that if I have the operation first I would have to isolate with my family in a bubble whereby we had to stay home and not go out. I am now going to have chemo first rather than the op so I have to follow the shielding guidelines which are far less stringent. My dad gave me his letter from the government which was provided to all those currently shielding which has explained things really well, good luck with your journey xx

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Confused, lonely & worried

Hi All,

Just to introduce myself, I was diagnosed June 19th with grade 3, ER+, PR+, HER- invasive ductal (16mm) BC after an ultrasound & biopsy. Have dense breast tissue so had to have an MRI (June 25th) which showed another lump (12mm) next to initial one. Further ultrasound & biopsy yesterday. Initially they said surgery (lumpectomy) on July 15th and I started self isolating in our basement from my hubby & 2 boys on weds 1st July so that they could still work. But now they've moved the surgery date to July 22nd due to new COVID rules & the new supergreen areas in hospitals. Is anyone else isolating from their family as well? I know it's only been a few days so far but I'm finding it really hard to be alone at a time like this and they've said I have to self isolate after surgery too for a further 2 weeks before radiotherapy. Has anyone else had this restriction?

I'm also reading some people's stories and find that some people have a mastectomy with similar results to me and I wondered why that and not a lumpectomy?

Sorry for the long post & questions I'm just feeling quite alone.

I wish everyone well on their journey.

Jo22 xx