67422members
355075posts
cancel
Showing results for 
Search instead for 
Did you mean: 

Confused, lonely & worried

78 REPLIES 78
Highlighted
Member

Re: Confused, lonely & worried

Hi Louise, I hope you're having the most wonderful weekend celebrating with your family! 

Yes the soreness is wearing isn't it and my armpit is still giving me some trouble, less every day though. 

I agree re: asking the questions and not feeling bad about about doing so. I feel so much better since getting the next steps outlined more fully (I must be a control freak 😉) and even better now they have told me I don't have to self isolate until after my covid test on the 18th ready for the 21st surgery date. Yay what a relief! We went to coast but it was heaving so didn't stop and drove up the coast a little but it was all very busy. No ice cream either!!! Very disappointing lol - but nice to be out and about. 

Keeping my fingers crossed for your results this week. xxxx

Highlighted
Member

Re: Confused, lonely & worried

Hi Claudia, glad you got your treatment on Monday & a positive response about your back pain. I hope you manage to rest during this round of chemo and feel strong soon. xxxx

Highlighted
Member

Re: Confused, lonely & worried

Hello Claudia, hope you’re doing ok today.  Have you heard of ‘Life Kitchen Cookery’? Really lovely guy set up that charity. They have recipes specifically for pts going through Chemo with altered taste. Apparently all to do with umami flavours? (Found them on an episode ofYou,Me,BigC podcast).

Best wishes, 
S

Highlighted
Member

Re: Confused, lonely & worried

Hi Jo,

I empathise with feeling down, I’ve been doing pretty well in that regard the last few days, and last night for some reason, just felt really down. Still a bit tired from anaesthetic and meds and it’s only natural I think for the emotions to take over again at times, even when we think we’re doing a bit better. Okay today again though. I have a lovely long weekend coming up with birthdays to distract me, my eldest turns 25 and he’s just got a new job after being out of work through Covid, so I’m really pleased. My son/daughter twins turn 20 also. Maybe a little lower key fun than usual but still nice. 

I’m more sore now, 3 and 4 days in, bruising coming out maybe? But it’s not too bad, it’ll be on a different level with the mastectomy I’m sure. Have to get in to ‘rest’ mode and I’m not great at that.

I understand your feelings about being low as you had a lot of uncertainties and worries, but what you go on to say all sounds much more positive and I’m really glad to hear this. I’ve phoned my BCN at least 3 or 4 times with my long lists 😊 and she just goes through with me until I’m feeling some reassurance. She can’t always answer everything, but even when I don’t get a definitive answer and I have to wait until I see my onc, I sometimes get a better perspective from talking to her which can help reduce worry in the meantime. But your treatment path/surgeon/isolating news sounds like it’s all really helped give enough reassurance that you can relax a little and have some much needed family time.

We’re not far from the coast in Suffolk, used to live a few minutes away but moved to help my husband’s commute, I miss being so close. Enjoy a lovely walk.  I’m still isolating so have a huge coffee ice cream for me ☺️.

Louise xx

 

Highlighted
Member

Re: Confused, lonely & worried

Hi Claudia,

I’m glad you got your chemo in..all steps nearer the goal of end of treatment - so much time passes and often delays so I just want to keep things moving along, you’re probably the same. 

It’s good to have reassurance about your back. I think we all read too much into any twinges, naturally I think as we’re so anxious. Like Jo I’ve found my BCN helpful at answering queries in between appointments. Try to relax and rest it, maybe some gentle exercises? Best wishes x

Highlighted
Member

Re: Confused, lonely & worried

Hi ladies, I did manage to get my chemo on Monday thankfully and had a chat with the oncologist about my back which he felt was more muscular than anything else. I must admit this round of EC has been different this time, I'm so tired this time around so can't get much exercise in to help my back but I'm not experiencing the metallic taste too much this time as it drove me mad on my last session. 

 

Hope you're all well xx

Highlighted
Member

Re: Confused, lonely & worried

Hello Louise! 

Great to hear from you! I'm so pleased it went well on Monday, that's really good news. The anaesthetic knocked me out for a few days too, I was glad when the fog lifted 😁

Fingers crossed for your results coming back in time for Tuesday and all being clear. 🤞 Shame about the doctor being away but yes I guess it is better that they get a holiday!! I am really pleased they'll do an immediate reconstruction for you as that is something that appears to be uncommon during this situation, that's a real positive.

Are you sore? How are your exercises going? I found them quite hard to begin with but hang in there they definitely get much easier. I do have a lump where my incision is but he nurse says it will go down and not to worry.

I've had a bad few days, just been really down in the dumps as I couldn't get hold of any other consultants to get a second opinion about my recent results etc. even through my private healthcare as they were all on holiday! And what with another imminent self isolation I was really low. BUT then I spoke with my breast nurse and she answered all my questions around the DCIS and recurrence rates and I feel that the path they have chosen is correct. Plus then they called yesterday and confirmed the next surgery date with the surgeon I wanted at a local private hospital AND I don't have to self isolate until after my covid test 2 days before - whoop whoop!

So as a long awaited outside treat we're off to Whitby in North Yorkshire today for a walk on the beautiful beach and have some fish & chips!!

I hope you can get lots of rest and sleep! Enjoy the weekend. Talk soon xxxx

Highlighted
Member

Re: Confused, lonely & worried

Hi all on our little supportive thread 💐😊

I meant to update yesterday and got waylaid. SLNB (Mon) went well, pain easily manageable (some goodly drugs). Home the following afternoon, stay only required because of unrelated medical complications. Just a bit out of it for a couple of days because of anaesthetic and no sleep in hospital. A few days post op isolation then I’m freeeeee!

My onc is hoping my results will be back for their next MDT, Tues 11th, and get quickly on with next stage depending on results, he believes a negative node result is likely (🤞) and we can go straight to mastectomy and simultaneous reconstruction (change of plan with a delay for rad if positive), but plastics surgeon will be away on leave so that will delay things a couple of weeks. The man is allowed a holiday I know 🙂 but just all the waiting....

How is everyone else? 
Louise x

Highlighted
Member

Re: Confused, lonely & worried

Hi Mel, oh that's interesting so it didn't show up on any of your scans either? I'm really worried that if they didn't know it was there how will they know they have got it all or that it isn't in the other breast? And if you are "prone" to DCIS will it just come back after the radio? Did they explain that to you? I'm so confused about this diagnosis....

Best of luck with your injection today xxx

Highlighted
Member

Re: Confused, lonely & worried

Best of luck today Louise, hope you managed to get some sleep xx

Highlighted
Member

Re: Confused, lonely & worried

Haha yes Dad's are good at that. I'm pleased his pep talk worked. I'm a bit the same was active before but now it's a real effort to motivate myself to get out & about.

Best of luck today xxx

Highlighted
Member

Re: Confused, lonely & worried

Hi Jo,

DCIS was never mentioned until the pathology report after surgery. Radiotherapy is now finished and I have my first Zoladex injection tomorrow then letrozole added in a month later. 
hope you get all the answers you need 

 Mel xx 

Highlighted
Member

Re: Confused, lonely & worried

Hi Claudia,

Never too old for a telling off from your dad 😄 Yes I’m in for SLNB tomorrow, in mid morning and on the afternoon op list. 

Louise x

Highlighted
Member

Re: Confused, lonely & worried

Thanks Jo,
I’m not sleeping well at all at the moment so I’m not expecting to, might be a long night. I don’t feel too anxious though, I think all of us by this stage just want to get on with things. 
Thanks for thinking of me, and I’ll update soon. Look after yourself, and the same to everyone on this thread.  
 ❤️

Louise x

Highlighted
Member

Re: Confused, lonely & worried

Hi jo, yes I'm feeling much better today, my dad rang me last night and gave me a good telling off. He said it's because I'm not as active as what I'm used to be and now my back is playing me up. He told me to get out for walks and do some stretches to keep my back from being stiff.

He's right of course I was so active pre lock down and pre cancer that I didn't suffer much from my back. I realised that I'm barely been doing anything whichwwill invariably cause my back to seize up. so I went out for a couple of power walks today, did some yoga and generally made sure I didn't sit for long periods. Each time it did ease my back pain and lifted my mood. Sometimes a good telling off is what is needed 👍

My finger is feeling much better today and last night was the first good night's sleep I have had in the past 4 nights, so I'm hoping they will allow me to have chemo round 2 tomorrow. 

I hope some of the replies on here have helped you with your next steps and I'm sending you a big virtual hug 🤗

Louise is it tomorrow your having your op? If so I will be thinking of you xx

 

Highlighted
Member

Re: Confused, lonely & worried

Thanks S, I'm sorry you have been through a similar path but I'm grateful for your advice.

They haven't offered a mastectomy at all for the 2nd op only the WLE/shave. Sounds like you have a good few options for the future which is great, I think I need to ask about these options too.

Same as you, no onco dx test yet until after the 2nd surgery results but it will most likely be done. Great that yours came back low enough not to have to go through chemo.

Best of luck starting tamoxifen & radio this week. Keep in touch & take care.

Jo xx

Highlighted
Member

Re: Confused, lonely & worried

Hi Mel,

Thank you and yes clear lymph nodes is great. So did they know there was DCIS in there before your surgery then? My surgeon says they didn't know it was there. Which makes me worried that they can't detect it in my breasts, what if it is in the other one too? 

They won't give me oncotype testing yet until they have the 2nd path results.

Are you finished with your treatment or do you have to have more radiotherapy?

Take care, Jo xxx

Highlighted
Member

Re: Confused, lonely & worried

Hi Claudia,

Hope you're doing a bit better today? Stress is a nightmare. When my husband was diagnosed with prostate cancer a while back all my chest muscles spasmed and I looked like the incredible hulk! It took a while to settle down but I thought I was having a heart attack at the time.

I'm sure you've tried all sorts of things and it is difficult to switch off from all the cancer noise isn't it but maybe a nice long bath might help. 

Take care,

Jo xxx

 

Highlighted
Member

Re: Confused, lonely & worried

Well I think you come across brilliantly!  It was just what I needed to hear, thank you.

My husband is really well now and didn't suffer too badly, thankfully but yes I do feel like we're being challenged at the moment!

I'm sorry your treatment plan is taking so long you really have had a very long delay I guess mainly due to your other illness. It must be very hard on you and your family. But tomorrow is the start and then it will move quite quickly all being well.

Best of luck tomorrow & let me know how you get on.

Jo xxx

Highlighted
Member

Re: Confused, lonely & worried

Hi Jo, 

So sorry to hear you need the 2nd surgery. I really feel for you. I had the same with about a month between surgeries (May, June) as my tumour was at the edge of the path sample. It felt like a backwards step to me at first but the best & brilliant news is your nodes are clear.  So I tried to think of it as a really rubbish side-step having already climbed a mountain and made awesome progress. My understanding when they go back to do a ‘shave’ is that it is a tiny amount and if it is DCIS that doesn’t increase calculated tumour size or make it more likely to need chemo. 
Like you I was offered mastectomy at that stage but also offered another WLE. And a definite mastectomy if the margin couldn’t be cleared a second time. The surgeon said I could change my mind at a later date if I couldn’t live with having breast preserving surgery and if I was very concerned with recurrence. My breast unit only does the implant reconstruction without other options ( they told me that there are different options available at larger centres) Such an individual decision and I’m aware how one can’t always self-check for Lobular BC.  At this point I needed to trust the multi-disciplinary team and decided that they wouldn’t have offered the 2nd WLE if it didn’t have a good outcome.  They offered the OncoDx Test but refused to do it until after the 2nd path report was in. 
I didn’t know what the second surgery would involve. The surgery was shorter in duration and at least I knew the hospital set-up. I found physical recovery was easier as they didn’t touch the armpit so I could keep better mobile. Mentally I found it much tougher (am thinking of that 3rd picture in the cartoon!) and I wasn’t as physically active ready for the second surgery, totally my fault. 
I made a massive effort in the small window between surgeries and self-isolating to catch up with my closest people (in the garden, at a distance) but clearly was very cautious as the last thing I wanted was any delay due to Covid. 
Again there was no firm decision about the benefit of chemo throughout all of this. It felt to me that my whole life was on hold and I had a lot of anxieties about expectations to return to work. I sought counselling at this point which has helped me stop darker ‘What if’ thoughts but also has let me go with my feelings when it feels right. (I used Breast Cancer Haven for counselling, who do sessions by Zoom).
I honestly think with little steps and support, you will get through anything. 


My understanding is that in NICE guidelines for follow-up of Lobular disease there is a recommendation for annual MRI (in addition to mammograms) which should be reassuring.  My surgeon has not agreed to this yet so if it is not available next year then I will ask for a second opinion referral. The OncoDx score came back low-ish so they didn’t offer chemo. The adjuvant treatment is our future protection so I’m working hard on the half-full. Started Tamoxifen and RadioT starts this week.  
Sending best wishes and thinking of you x



S

 

 

 

 

 

Highlighted
Member

Re: Confused, lonely & worried

Hi Jo,

that was definitely a mixed bag of results but the very positive bit is the clear lymph nodes.  
My tumour was much bigger than expected (With DCIS in the middle) so I had what they called “shaved” areas. Thankfully they did this at the first surgery. As the margins wouldn’t have been clear without the shave they did five boost sessions of radiotherapy to the tumour bed. 
Covid rules just add extra stress to an already stressful situation. 
Second opinions and your own research is useful to ensure you are making an informed decision. Did you have Oncotype testing? I found it really useful for making a decision around chemotherapy. 
best wishes

Mel 

 

Highlighted
Member

Re: Confused, lonely & worried

Thank you, my lymph nodes were clear on my Mri scan 6 weeks ago and I do suffer from back pain occasionally. I have been getting totally overwhelmed by it all recently and can't see a way forward to uplift myself. The current covid situation here in the North West doesn't help matters either. My BCN isn't too concerned about my pain as she said it can be stress related. Thanks once again Kitkat it's nice to know someone else who has had the pains too xxx

Highlighted
Member

Re: Confused, lonely & worried

sorry Claudia,


Posted before I meant to!

.....then after scans wished I hadn’t asked as my anxiety waiting for results went thru roof....the day after I was told scans were clear, my back pain went.

Maybe your back pain is side effects from chemo??

i hope you able to enjoy your weekend a bit.

thinking of you, sending love x x

Highlighted
Member

Re: Confused, lonely & worried

Hi Claudia

sorry you feeling really low today.....sometimes it just gets too much no matter how positive you want to be.

i had terrible back pains when I was waiting for my results and when I found out there was cancer in first node, they got even worse.   I asked Onc for a scan and she said I didn’t need one but if it was going to make me less anxious then I could

Highlighted
Member

Re: Confused, lonely & worried

Hi jo sorry to hear that you need another op but at least you will know nothing is lingering in there. Ive hit a real low today I have had back pain for a couple of days now (since my finger flare up) and I've convinced myself it has spread into my back. My finger is still swollen but no throbbing so that's good news 

Highlighted
Member

Re: Confused, lonely & worried

Things make sense in my head..I don’t necessarily know how they come across 😀 .
I do worry too about the timescales..I totally get that. I was diagnosed second week in June and I’m still very much still in diagnostic tests, and we’re August already. It’ll have been 2 full months by the time I have node results and an actual full treatment plan..then the wait for the mastectomy. The slowness of it is painful though my GP tried to be reassuring about it not being critical so I keep that in mind  

Gosh, your family have had bad luck with your husband’s diagnosis too. This is where we hang on to the fact that BC is very treatable these days - something that escaped me at first when I was immersed in all the fear and couldn’t even think, and still does t be honest in my darker moments. But it should be our reality and the task in hand is to get you sorted. It’ll be months yes, and it’ll be grim at times, but then it’ll be done and you can get back to your life and family.

And thank you for being there for me too, it makes a big difference xx

Highlighted
Member

Re: Confused, lonely & worried

God you are brilliant Louise! You put all the gobbledegook in my head in real, normal, reasonable sentences! Thank you for that.😍

Yes, yes and yes to everything you said. I do need to question and it is OK to question, I have to remember that.

The isolation alone doesn't bother me, like you say, it's the possibility of this surgery not getting everything and they say they'll just do another but it will have to be mastectomy and I'm not even starting radio/chemo and hormone therapy until after all that. With isolation included that could be October. And again as you rightly said the confidence in the treatment plan is not there! Gosh this is hard isn't it?!

My husband had to do the antibac washing & sheet changing when he had prostate cancer surgery last year but they didn't make me do that, maybe because i could isolate completely?

I'm here for you when you're out of surgery. And then you have birthdays to celebrate - yay!!! 

Again thank you for your message, i feel a tonne lighter! 

Lots of hugs and best wishes for Monday xxxxx💗

Highlighted
Member

Re: Confused, lonely & worried

awesome graphic, I'm usually left but most definitely right at the moment! Thanks L, that really lifted my spirits xxx

Highlighted
Member

Re: Confused, lonely & worried

I’m a realist so my current thoughts on my situation are on the right. 😉

Highlighted
Member

Re: Confused, lonely & worried

4ADEA943-5EA6-4B71-B8BC-F5A296F5231F.jpeg

Highlighted
Member

Re: Confused, lonely & worried

Hi Jo,

I think what you have to take from that as the main focus is the positive, the good news. And that is really good!!

Just upsetting that it has to be accompanied by another worry, this seems a pattern with BC, it’s never easy is it? But they’ve found it, so they can get it! If you want that reassurance definitely get a second opinion. I’m prepared to do this after my SLNB, especially surrounding the issue of reconstruction at my hospital.

It’s my understanding that apart from trials and hospitals/Dr’s using the newest state of the art methods, most BC treatment is fairly standardised, but, I think there will naturally still be some variations in methods of diagnosis and treatment, and Dr preference/opinion between different hospitals and doctors. So, though they say e.g., a lumpectomy and adjuvant treatment is proven to be as effective as a mastectomy, there may be variables, and this is where, reasonably, you need a second opinion on that..and importantly too I think, something like your result, I.e., something not previously found, can mean any confidence you had in that fact is undermined. I think it’s important to have confidence in your team/diagnosis/treatment plan. For you to get through this in the best way possible, physically and mentally you should have that reassurance. If that makes sense... 

I know what you mean about lots of questions..I’m the same, always armed with my notepad. The BC nurses will start to run away from me when I say ..”just a couple of little questions...” ☺️

I feel for you as the isolating is really (sh*t 😉) hard. I suppose it has to be looked at that it’s not that long in the great scheme of things..as we are trying to get well to have many more years of life, we hope. But as much as we both logically know that, it doesn’t really make it easier when you’re feeling anxious and cut off from those we love most, at the time we need them most. But we’ll get through it, because we have to. 

I’m ready (as I’ll ever be) for Monday. I’m also being made to isolate for a week after, new protocol apparently at my hospital. I‘m having to scrub and wash hair with anti bac wash daily and so on, even change bed sheets daily, is that the norm or do they just want me extra clean? 😬 

Highlighted
Member

Re: Confused, lonely & worried

Excellent news Claudia. Fingers crossed for Monday.

Lots of hugs, Jo xxx

Highlighted
Member

Re: Confused, lonely & worried

Hi Jo,

I think what you have to take from that as the main focus is the positive, the good news. And that is really good!!

Upsetting that it has to be accompanied by another worry, this seems a pattern with BC, it’s never easy is it? But they’ve found it, so they can get it! If you want that reassurance definitely get a second opinion. I’m prepared to do this after my SLNB, especially surrounding the issue of reconstruction at my hospital.

It’s my understanding that apart from trials and hospitals/Dr’s using the newest state of the art methods, most BC treatment is fairly standardised, but, I think there will naturally still be some variations in methods of diagnosis and treatment, and Dr preference/opinion between different hospitals and doctors. So, though they say e.g., a lumpectomy and adjuvant treatment is proven to be as effective as a mastectomy, there may be variables, and this is where, reasonably, you need a second opinion on that..and importantly too I think, something like your result, I.e., something not previously found, can mean any confidence you had in that fact is undermined. I think it’s important to have confidence in your team/diagnosis/treatment plan. For you to get through this in the best way possible, physically and mentally you should have that reassurance. If that makes sense... 

I know what you mean about lots of questions..I’m the same, always armed with my notepad. The BC nurses will start to run away from me when I say ..”just a couple of little questions...” ☺️

I feel for you as the isolating is really (sh*t) hard. I suppose it has to be looked at that it’s not that long in the great scheme of things..as we are trying to get well to have many more years of life, we hope. But as much as we both logically know that, it doesn’t really make it easier when you’re feeling anxious and cut off from those we love most, at the time we need them most. But we’ll get through it, because we have to ❤️AC3CF57E-972F-4F98-8166-4A78AB9EEFCE.jpeg 

Highlighted
Member

Re: Confused, lonely & worried

Hello Louise,

I got my results yesterday... so some good but a bit of bad news. Good is that it's not in my lymph nodes nor blood vessels. Bad news they found an area of DCIS attached and they found it in the margins of the bit they removed. So they have to go back in to do a badly termed "scrape".

More bad news I can't have it till 21st aug & I have to self isolate for 14 days all over again.

I'm concerned that the nurse said they didn't know the 3rd area was there as it hadn't shown up on any scans so I am probably going to get a 2nd opinion and may opt for mastectomy. Plus who knows it's not also in the other breast. Lots of questions.

How are you doing, ready for Monday? xxxx

Highlighted
Member

Re: Confused, lonely & worried

That’s good news Claudia. Try to have a restful weekend ahead of Monday. Look after that finger! 😊 👆xx

Highlighted
Member

Re: Confused, lonely & worried

Hi all, surprisingly my bloods came back fine! The oncologist want to check my finger but can't see why I can't have the chemo on Monday. Hopefully by then my finger will be healing better so I'm really pleased. Hope you're all well xx

Highlighted
Member

Re: Confused, lonely & worried

Hi S,

Yes to the waiting being almost as hard as diagnosis. I think Covid exacerbates this, as I could distract myself more whilst waiting for surgery/ies, isolating definitely adds a bit more stress into the situation. 

I think the practice of having a partner on FaceTime or on speaker would be helpful and supportive for someone who needs it. Anyone missing the supportive presence of their partner should ask for it to be allowed. It’s never been suggested to me but I can’t imagine any of the Drs I’ve seen so far saying no, well I hope they wouldn’t, it’s a very understandable and reasonable request. 

My husband would love to be there for me in any way he could, and I appreciate that, but I don’t do this myself because personally I feel okay doing the appointments on my own. By nature I’m a clear thinker and good at processing information even when anxious. I have a long drive to and from the hospital, I find being by myself and putting my favourite music on loud helps to manage my anxiety levels for the ‘big’ appointments.  

Everyone is different and we should all do whatever helps us get through. ❤️💐

Highlighted
Member

Re: Confused, lonely & worried

Hi,

My husband was there for the initial diagnosis and there haven't been any other appointments apart from tests and surgery. I have my pathology results today following lumpectomy last week and my husband is ok to come.

I don't think they'd have a problem with facetiming/dialing in, it just hasn't come up for me as yet.

All the best,

Jo x

 

Highlighted
Member

Re: Confused, lonely & worried

Hi, I’m new to the forum. Reading your thread and thinking of all the hideous waiting and results. Isn’t that the toughest thing? 

Re being without your partner for appointments and results, do you FaceTime or Speaker-phone them in? I was diagnosed very early in lockdown and it was never suggested by my GP or Br Ca Unit. A medic friend ( who works at a different hospital) suggested it as she has done this for years and said she can’t see why every clinician wouldn’t want their patient to be best informed, be able to retain information and be comforted. 

So I have hubby ready in the carpark or at his work &  dial just as I go into the appointment.  Prop the phone on the desk. He takes notes and goes through questions I had incase any weren’t covered. He sometimes asked for clarification of a point. My surgeon is fine with this but I get the feeling I’m the only patient she has who does this. 
I don’t have him ‘on’ when chatting afterwards to the Br Care nurse, but it was a game changer for the consultant appointments.  
Maybe other units already do this? I just haven’t read anywhere about it being used. 

Best wishes to you, 

S. 

Highlighted
Member

Re: Confused, lonely & worried

Hi Claudia, great to hear from you. How are you?

I'd lost you, how are you doing? Did you start chemo already?

Fingers crossed for tomorrow that there is only localised infection and they can carry on. i get my pathology results tomorrow which I am anxious but realistic about.

I am here if you need a shoulder for anything xxx

Highlighted
Member

Re: Confused, lonely & worried

Hi Claudia,

Thanks. Hope that finger clears up quickly, sounds nasty. That sort of thing hadn’t occurred to me, but thinking about it I imagine there are various things like that that could delay chemo. 

I must admit, even if I hadn’t been given such strict isolating rules ahead of my op, I would be so wary of, not just Covid, but catching anything or being unwell which could delay my surgery/ies.

They were telling me in an appointment about how they had to stop any flap type reconstructions through the pandemic and have just restarted. A DIEP flap is a very probable option for my reconstruction and if I have good node results they plan an immediate recon...and I’m just thinking, please no second wave and more cancelled surgeries. 


Pre ‘cancer life’ I wasn’t at all a worrier, it’s not my nature to stress about things, I just organise my way through life always just ‘dealing’ with things and getting things sorted,  but this is so out of my control, it’s hard to adjust. 

I hope you and your family are doing okay ❤️ xx

Highlighted
Member

Re: Confused, lonely & worried

Good luck ladies with the next few days. I'm due my bloods tomorrow ahead of my chemo on Monday but I've got a badly infected finger which I'm on antibiotics for so I doubt my chemo will go ahead now

Highlighted
Member

Re: Confused, lonely & worried

Fingers and everything crossed you get the ‘best’ results possible tomorrow. I’ll be thinking of you. ❤️ 

I’m dreading my node results, as I know you are also so aware, so much hinges on such results in regard to the treatment plan, for me it will dictate if I have immediate recon. They take 2 weeks to come back and I know that’s going to feel like forever. 

I have to do an extra weeks isolation after the op and I’ve got three of the kids birthdays, eldest and then twins turning 20, just as I finish isolating, so maybe a nice family meal out if I feel comfortable, or at least a very indulgent takeaway and several large gins 😊

Highlighted
Member

Re: Confused, lonely & worried

Yes I think something has changed as i didn't get a notification when you replied either?

Great that it's Monday! And the tests are local - that would be a pain to travel for those as they take 5-10 minutes. It's funny how covid style (I'm stealing that one!) is becoming so normal for us. I wonder what it was like to have all the support groups, massages, manicures etc. during this. I think it would have made it much more manageable to be with people going through the same thing and to have a few perks lol! 

I'm loving being back with the family although I did way too much in the garden on Tuesday and paid for it yesterday. I've got my results back tomorrow so fingers crossed they go the radiotherapy way and not more surgery and/or chemo. Bit anxious but it is what it is.

I'll be in touch over the weekend. Enjoy the sunshine 😎  xxxx

Member

Re: Confused, lonely & worried

Just reread the detail about your hospital protocol and that does sound reassuring x

Highlighted
Member

Re: Confused, lonely & worried

Hi Jo, I somehow missed your message on Sunday, sorry. I usually get a notification. 

So glad for you that you’re back with your family, this is hard enough for us even without the enforced isolation. I hope you’re feeling less sore now a few days has passed, but are you doing okay in yourself?

Thank you for thinking of me.

My SLNB op has been pushed to Mon 3rd, so just the weekend to get through. After a bit of a faff they have allowed me to have my covid and mrsa swabs locally instead of the near 90 mile round trip to the hospital, so that’s good. Doing that tomorrow.

I think my hospital are using pretty much exactly the same protocols - I imagine much of it is standardised. My husband can’t come in at all even to drop me off, but that’s having treatment Covid style and I’m getting accustomed to it. 

Started to tell a few people now the op is around the corner and it’s more real. xx

 

Highlighted
Member

Re: Confused, lonely & worried

Hi Louise,

Just checking in on you. Any news on tomorrow? I've been thinking about you lots. I do hope you get some progress soon.

Lots of love & hugs, Jo xxx

Highlighted
Member

Re: Confused, lonely & worried

Hi Louise,

I do feel much better... and fresher, thank you! And I am back with my family which is glorious. 

Sorry you've had a worrying week, it sounds like so much is up in the air, which must be hard. If I can do anything to allay your fears about the main hospital and increasing your chances of catching COVID I would say that if they are following the NHS supergreen guidelines it should be highly unlikely. The process with me was military style. It was like I was a VIP. They moved people out of my way when i had to go up for my wires putting in and radioisotopes. We had a separate entrance, waiting area & post op ward. It's never going to be perfect but I wasn't worried at all, I felt very safe. The nurses working in that area were there for the long haul and would not be working anywhere else during the supergreen rules phase. And even if you need the ICU at least it's right there.

I would imagine they are under pressure to get you on a treatment path now so hopefully it won't delay your SLNB any further. My fingers and toes are tightly crossed.

Sending you huge hugs Louise. xxxx

Highlighted
Member

Re: Confused, lonely & worried

Hi Jo,

Good to hear your update and very pleased and relieved for you that things went well, sending you extra good recovery and pain free soon vibes. I hope you feel better and fresher after a nice shower. 💐

I have the 31st booked for SLNB, but I’ve just been told that this may be cancelled/moved now. This is because I have other medical issues, there is a small theoretical risk of complications which could lead to a life threatening situation and needIng intensive care. Due to the location of the 31st op (NHS using the Covid free local private hospital) there would be no intensive care bed there.  I’ve had surgeries before without issue and the reality of the risk is very small, though I see where they’re coming from providing the safest care and also a liability point of view. They are meetIng next week to decide and I just know they are going to cancel and move me to the main hospital, which carries a higher risk from Covid and means a delay of however long for a new date.  I’m trying not to get upset or stressed.  

I don’t as yet have a date for my mastectomy, I only know the results from the SLNB take 2 weeks and they won’t give me a date until the node results are through as this may change aspects of the mastectomy, i.e., if clear I may have immediate reconstruction, in which case it’ll be a longer done done in conjunction with the plastics team. 

So at the moment I’m still in that frustrating limbo place. Will see what next week brings xx

 

Highlighted
Member

Re: Confused, lonely & worried

Oh I'm pleased its going OK for you Mel. Had my surgery on Weds & recovering well except for the obvious pain & tiredness.

Only 2 more sessions for you then? That's great. Are you doing ok?

Jo xx