Kip
Member
Posts: 908
Registered: ‎27-04-2018

Re: Surgery May 2018

Hi Feenix,  funny you should mention the hula hoop I was looking at mine today and thinking I need to get back to it, I haven't done any for a few weeks, but feel I should.... I'll be back at 5 minutes too I reckon but the waistline is crying out for some help!

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Posts: 674
Registered: ‎30-03-2018

Re: Surgery May 2018

Lincoln tomorrow... workmen today.

Kip... pleased to see you doing better after cycle 2.

There have been lots of mentions about Rachael Bland. I remember reading some of her story when I was first diagnosed and I have looked at some of her vlogs/blogs and listened to some of the five live pod casts yesterday... they mentioned about communities, such as this one, which give so much support, where we can all relate to each other.  She said it how it was, and seemed to make the most of her time, working, holidays, family time and raising awareness with the other ladies on the radio show (which I will catch up with). The sad stories are the ones in the news, especially when they are working in media, are well known, but there are many more good news stories that don’t get a mention. 

Hope you’re managing to work.

Ive picked up the hula hoop again .... just doing a minute or two... will I ever get to 5 minutes never mind 15 😩 😂 

 

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Re: Surgery May 2018

Enjoy your day resting Michelle... remember, steady away. I’m not doing too badly with my list of things/jobs to do... no pressure though. This time with OH being away I’m in a much better place mentally and of course Im doing lists, planning things and catching up with series on tv. I’m off to Lincoln tomorrow, on the train, and of course I’ve got my shopping list !! York is a great place and I’m hoping to meet friends there soon. It’s good to plan ahead, have something to look forward to. I’m starting to think about a few short trips to have.. maybe south of France, Netherlands, Portugal and of course over here. 

Theres no sunshine here... cloudy. Hope it’s shining bright where you are.

hugs xx

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Re: Surgery May 2018

Hi Clare

Your GP sounds great... very helpful. I do hope you get sorted before next week.

I had a rash after first op to the orange chlorprep. I had iodine after that and was ok. When I had my dressings changed they used Hydrex Pink which has less % of chlorhexadine in.

image.jpg 

I’ve been told I will have mammograms which I know didn’t show the idc, which was very small, or the dcis. MRI didn’t show dcis but did pick up idc as they are solid. USS showed idc, or rather there was ‘something there’. I don’t know whether I can request an uss alongside a mammogram, or what would be the best. I only had an MRI because I thought I’d had some dimpling which would have indicated the invasive cancer was bigger... it wasn’t.  Normal follow up screening is mammogram. I’ll have to get OH to look into the research side of things first. Anyway, that’s why we are always told to be vigilant as nothing is 100%. 

You need a dermatology referral and have allergy testing. I had that done some years ago... they used my back for everything they wanted to test me for. I had an allergic reaction, with swelling,  probably due to long term handling of IV antibiotics at work... one time too many set it off. 

From your histology report it would appear your high grade dcis would indicate a mx. The problem with dcis you never know what it will do in the future plus I was told it’s unknown as to the effect rads  have on it. 

Massage with oil or moisturiser helps scars mature, softens them, so I know that works. I’m massaging all the area to try and smooth it out... must be my fat 😂 Everybody’s wounds/scars are different.  

One good thing about diagnosis was I lost weight although tbh I’d already started on a healthy eating plan before. After last surgery I ate what I wanted over a couple of weeks and I put weight on but now I’m back onto sensible eating.... but I really need to increase my exercise as I’m still overweight. I need at least a stone off... I’d better do some more outdoor stuff... garden bin day tomorrow.

hugs xx

 

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Re: Surgery May 2018

Sorry to hear you have had such a difficult time with your medical team Claire. It’s good your GP is helping you to move oncologist. I hope you can get it all sorted before the next stage in chemo.

Thanks Jean, I am enjoying still being in bed. I think my problem is once I could drive I’ve been doing everything I would normally do but I need to remember what I’ve been through annd pace myself!
How are you finding it without your OH? I quite like it if mine is away for a night or two, I can do what I want and watch what I want! A month can be a long time so it’s good that you have so many plans. If you’re anything like me I want achieve half of what I intend to! I don’t know where the tome goes. We have friends in York so have been there a lot over the years, it is s beautiful city. I’ve been thinking about your list post and realised I have gone a bit list mad since March. I have a list countries to visit, a list of things to do in London, of activities to do, things to do with the family, decorating that needs doing around the house, now I’ve just told you a list of my lists! Those lists are all of things to look forward to, I suppose that’s what gets us through these times.
Well I hope you are getting through your list and enjoying the sunshine xx
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Posts: 692
Registered: ‎25-03-2018

Re: Surgery May 2018

Hope you can have a restful day Michelle.
I certainly felt tired for weeks after my initial surgery and I get fatigued on chemo too. You’ve had a double whammy so it’s understandable.

Jean thanks for sharing your experiences and also your great advice. I have taken note and will be talking things through with my BCN today. I saw my GP yesterday who has written to another oncologist at Barts to see if he can take on my case. Fingers crossed. My OH and I have seen him once before and found the interaction much easier than with my present onc. I just want to start the second half of my chemo afresh. I wrote a list today of things to do and discuss. I used to write them all the time and you reminded me how helpful a list can be. How are you doing? I was very interested to read you had an allergy to the prep. Which one are you allergic too and what happened? So far my team tell me I’m allergic to chlora-prep. I had an allergic reaction when I had my prolapse surgery in 2012 so had already told them Ithoight I was allergic to iodine/betadene. I came out in a spotty rash. They used chlora-prep instead after my first BC surgery this time I came out in a spotty rash on my abdomen but also my torso turned bright red and you could see the brush strokes where they’d painted the chlorine-prep on.m! I’ve been told that I will need various tests to see which prep I can tolerate before my mastectomy. One of the things I am going to ask PALS to investigate is whether my wounds took longer to heal properly because they were being cleaned with a sponge impregnated with chlora-prep each time my dressings were changed (2 to 3 tines a week). I only found out when I had a problem with my PICO dressings and had to go to the ward to get them changed. The nurse said he would clean them with chlora-prep first and advanced towards me with the sponge on a stick. My surgeon looked horrified when I told her and she realised what had been happening. It does make me worry about my next surgery. Hope they can find something appropriate and not have to use 400 tiny alcohol wipes to clean me as they did before my re-excision!! On a different note thank goodness we both found something untoward when mammograms shied nothibg. Have you been told you can have MRIs when you are screened in the future? I need to check as my surgeon has said she will request these for my follow ups. I was initially told the NHS only fund MRIs if you have a proven BRCA mutation which I know I do not have. I would certainly feel more reassured having MRIs. Even my histology from my surgeries states that the samples they looked at show the tissue is very dense and multi cystic. Will certainly discuss the hospitals SOP with my medical team. When I reread the report I also noticed that the area of DCIS they found on the left is high grade which makes me think that having that Breast removed too is the right decision. I hope the massaging is helping with your scars,

Hugs to everyone xxx
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Posts: 674
Registered: ‎30-03-2018

Re: Surgery May 2018

Evening Michelle

Happy Birthday to your daughter... hope she’s had a great day.

I found after my first op, wle and snb, it took me a few weeks to feel ok.. probably effects of anaesthetic and allergy to skin prep... felt rubbish the first week. The next 2 ops have been much better recovery wise. You’re recovering from the anaesthetic but you also have the effects of chemo which may be the primary reason after 3 weeks. You’re doing well though.

Enjoy your chill out day tomorrow

xx

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Re: Surgery May 2018

Glad chemo was uneventful Kip, I’m jeeping my fingers crossed that the next 3 weeks are too.

Jean I love a list too, for the same reasons, structure and bad memory! I didn’t do any lists during chemo I couldn’t motivate myself. I like a weekly list and I wrote on the week before my op and ticked it all off, very satisfying!
I think I have been overdoing it, yesterday I was on the go all day including my usual walk first thing. I was exhausted by the evening. Today I had a lie in skipped the walk but a busy afternoon as it was my daughters b’day and I am zonked again today.
Did any of you find your energy levels low ( op will be 3 weeks on Thursday) after the op or do you think it’s the chemo catching up?
I am having an easy day tomorrow that’s for sure. X
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Re: Surgery May 2018

Kip ... pleased to see you are doing ok..and working.

cdc...Clare... get everything down you want to say... it’ll help you focus. You can request a refferal to a different onc.

My great achievement this morning is getting the ironing done... was sick of looking at it 👀 

hugs xx

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Posts: 674
Registered: ‎30-03-2018

Re: Surgery May 2018

How are you doing Michelle ?

xx

Member
Posts: 674
Registered: ‎30-03-2018

Re: Surgery May 2018

Pleased you got through chemo Kip.. and quick .. hope you’ve got plenty of meds to try and keep se’s@ bay. I’m not that organised ... I find it easy to write a list ... it’s getting through it that’s the prob. The ironing is still waiting to be done but I did get quite a few things done today. Tomorrow’s list is done... will the ironing still be hanging around I wonder 😂 

hope you have a good night

 xxx

Kip
Member
Posts: 908
Registered: ‎27-04-2018

Re: Surgery May 2018

Oh thats sounds an inferestjng programme, let me know how it is. You sound so organised, i coukd do witn a list but necer gdt round to writing one! Chemo went well, no nlood problems or reactions so back home jn 2 hours !
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Re: Surgery May 2018

I’ve got a list of things to focus on Kip... out of the 9 on today’s I’ve got two crossed off. One of those was the dexa scan and the other a phone call...nothing strenuous, yet 😂I just feel it gives a bit of structure to the days especially with OH being away. Plus I don’t forget things. And I don’t just sit around all day. I aim to watch a series, Mama,  on All4 catch-up ... its Israeli and apparently has a uniboober in it. 

I hope today is going ok and you get some respite from the se’s.

hugs xx

Kip
Member
Posts: 908
Registered: ‎27-04-2018

Re: Surgery May 2018

Sounds like you are very busy Feenix thats good. I ate cake and more cake.
Michelle i think we all need some tears at times, it does help to release what we all hold in side.. xxxx
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Re: Surgery May 2018

Hi Michelle... Actually my scar isn’t too bad now I’ve got the tape off and am oiling and massaging. I think the tape didn’t help. It’ll take some time to settle down as all scars do. I just have to be patient as Kip says. OH is seeing family... I’m under strict orders not to go out on bike  while he’s away. He’s imagining I’ll be ending up in hedges and all sorts !!! I’ve not got a new bike yet. The old one has had the seat tightened and it’s a lot better. I gave OH the ok to be away for a descent spell so he’s not back til beginning of next month. He’s got jobs to finish off over there. We’ll go together next time. I’m enjoying pottering...got lists of jobs to do here, I’m also reading, catching up with recordings/iPlayer etc. And will also have a bit of retail therapy. I’m going to Lincoln this week and have other places in mind, like York perhaps. May get to meet up with friends ... they live where I originate from so they’re not nearby.

Things caught up with you on Saturday as they tend to do. It’s a bit of a release valve, which is good. Great you had a good day in London though. Stay positive... it’s the only way, although having  a blip along the way is only natural.

hugs xx

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Posts: 138
Registered: ‎10-08-2018

Re: Surgery May 2018

Just joining in with the 'Happy Birthday Wishes' dear Kip.  Enjoy the cake xx

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Registered: ‎30-03-2018

Re: Surgery May 2018

HAPPY BIRTHDAY KIP 🎉🎁🎈
I hope you have enjoyed the day. I also celebrated my birthday whilst having chemo. I was lucky it fell in the last week so I had lots of celebrations but I still found myself thinking about my previous birthday and how my life had changed in that year. I suppose it is inevitable that we do that. Your penultimate T though, that is good. Not long to go until you are done and can move on.
Jean, sorry to hear your scar doesn’t look as you expected, hopefully it will improve with time. Or as you said you can always get a revision if it bothers you. I think all of our main objections now should be to get as healthy as possible again. How is the cycling going? Are you still planning a new bike? How long is your OH away for? Has he gone to see family again or is it work? I might try bio oil too, it’s supposed to be good.
Claire I’m suprisednto hear your onc hasn’t taken your nausea seriously. Mine was quite insistent that I should have to put up with any nausea. In fact she was always plying me with different meds! There is a huge variety for the nausea, do you have a pre chemo appt with your onc? I would insist on a prescription then, you don’t have to suffer nausea.
Thanks for all of your messages regarding my results. I had a bit of a breakdown on Saturday and I think it was due to all of the emotional build up. It started as most things do with a small family argument and then I just couldn’t stop crying. I felt so sad for myself for everything I’d been through. It is unlike me to feel sorry for myself but that’s how I felt. I even feel bad writing that because here everyone is going through the same awfulness. It was bad timing to have a breakdown because me and OH we’re going up to London for a night so it put a bit of a downer on that. Having said all of that I woke up this morning and felt fine again. It was probably good to have a release of it all just wish I hadn’t done it in front of the girls, but I just couldn’t stop myself. We had a good day in London today so all worked out well.
Onwards and upwards xx
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Posts: 336
Registered: ‎05-05-2018

Re: Surgery May 2018

Clare i asked if i needed a mastectomy would it have any implications after having a TM. I was told not although they go in a diffrent place. I will have a lollpop scar though and no scar horizontally under my boob. I think day surgery is 4 weeks after chemo ends but could be 6 to 8 weeks depending on how busy they are and maybe even the surgeon. I am worried too re a mammogram picking up future problems but will definately get checks done annually for ever even oif i have to pay as research shows they are needed annually. I feinted when i first had a mammogram in June 2016 not sure if i was stressed or due to pain as dense boobs. I think i am over stress going to docs hospital etc now due to all the applintments i have had.
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Kip
Member
Posts: 908
Registered: ‎27-04-2018

Re: Surgery May 2018

Thanks feenix, getting on top of things bevore chemo and salt mouth washing beforehand.
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Re: Surgery May 2018

Kip

 

E15BCE92-7F91-44BD-8232-806C7507BBB3.jpeg

Enjoy your birthday cake ... and other treats. Wise words from your OH... I always say I didn’t know my expiry date before bc and I still dont. Here’s to many decades of birthday celebrations though... got to be positive.

I know where you’re coming from regarding mammograms and future monitoring....

I am sorest in the area beneath the old snb scar where I have more fat left... mx scar meets up with the snb scar. I’m massaging now so hopefully it will settle. I’ll have to lose more weight to get rid of the fat bulge...it’s still sore there. Looks like side bulge of boob .......but without the boob 😂 You’re right.. I need more patience. Time will make the difference ... and massage.

I would think they’ll go into your old scar for ANC.

Enjoy the rest of your birthday. 

I hope T treats you kindly this time... got everything crossed

hugs xxx