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MARCHING together

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Re: MARCHING together

Hi Lynne, please do join in, it's great to hear from you 🙂

 

My boob had just started to settle after the surgery so the swelling had gone but now I'm 7 sessions in, it has swollen again and is definitely more tender, lumpy and prone to the odd twanging sensation.  So much so that I have been taking my bra off at every possible opportunity over the weekend as it is more comfortable that way (and I'm a 30F(!!!) or at least I was before  I started a recent comfort eating binge, probably a 36F by now!) 

 

I'm not overly worried about the effects of the treatment because, as Rose says, the benefits of it are so high in terms of preventing recurrence that it is worth the risk of side effects.  I don't really like the whole 'half naked on the couch and stretched out while a camera watches me from above like I'm in a bad porn movie'  thing though, it just makes me feel a bit vulnerable and, I think, a bit violated.  Sounds dramatic I know and even I'm surprised by how much I dislike it as I didn't think I'd care after months and months of flashing my boobs at all and sundry. I'll be SOOOOO glad when this is over.

 

I'll send some good thoughts your way for when you get your ovary results, must be worrying for you but like all these things, the sooner you know what it is, the sooner you can deal with it.  Do let us know how you get on

xx

Sharon

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Re: MARCHING together

Hi ladies,

Can I join in the march!! Im 7 treatments down and 8 to go and may be a booster (for good luck)!

Tomorrow I have to see the gynaecologist regarding my mass near my ovary, which was discovered on my recent ct scan. I hwve been told that it is probably just a cyst but personally I want it out! Then it can be tested properly and cancer can be ruled out. 

Do any of you ladies have tightness in your treated breast, mine feels like its harder than usual and I get some shooting pains, nothing to fret about just wondered if im normal!!

Also I seem to get very anxious in the treatment room, im quite scared of the machine and keep wondering what it is doing to me, just hope they have it all set up ok. The time before last I held my breath as I was worried that the radiotherapy might go into my lung, the last time I was kindly asked to breathe normally and reassured that they allow for breaths...phew!

Its now nearly midnight and im still wide awake, hate the nights they seem to be very long of late.

Hugs to all you brave ladies xxxx

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Re: MARCHING together

It would have been nice to meet you, but I'm going to the Queen's in Hull- bit too far from Essex! Echoing your wish to everyone for a great week. I can't wait to find out for myself what this radiotherapy is all about!!! xx
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Thank you for your thoughts sharon, will report in hopefully after planning appt. I can relate to your emotional plunge, it awakens another level when I think we dont realise there is more! Rose, are you attending Queens in essex. That is where I go. Let me know, be good to meet up. To all, I wish you you a great week whatever you are having to face, look forward to hearing updates. Lol xxxxxx

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Re: MARCHING together

Hello lovely marchers, just catching up on all your news and progress and whilst I have been away, you have all been in thoughts. It sounds like another roller coaster but we will get through this. I had a bit of jolt at the cancer centre, as has been said when you traipsing to the hospital it doesn't seem so real somehow. But it does focus the mind when you are in the cancer place. Thanks for the all heads up re what happens, and my first session is 1242! Amazing they can be so precise, but planning for a long wait as apparently maintenance are in !! Love and hugs x x x x
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Re: MARCHING together

Hi Sharon

It was a huge step for me to move across from the "Breast Care Unit" to the "Queen's Oncology Centre" for rads. There was something about going into a place with cancer all over it as opposed to a "care unit", and seeing the really sick people there really brought it home to me, as it did to you, that this is all real. So I can relate absolutely to what you said. To a point I was floating through up till then, doing as I was told and following the plan, and there was an element of unreality about it. Going into the cancer hospital really was a wake-up call, and i've also been much more emotional since my planning meeting.

In this together, eh, from start to finish?

Love Rose xxx

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Re: MARCHING together

Hi ladies,

 

Babtastic you've had a horrible time of it, how on earth you've managed to stay sane through all of that is beyond me but it just proves that us humans are incredibly resilient!  Hopefully this bit of the treatment will be plain sailing for you so it'll be great to hear from you as you go along.

 

Fuffs I'm glad to hear they've sorted out some transport for you and I hope they've managed to do the same for Loubyloo (Lynne) who has a difficult journey in Devon - bless those volunteers. The treatment is tiring enough without the added pressure of transport difficulties (I love being able to rely on the London tube, makes it all easy for me).

 

Thanks for all your kind words ladies, as always you pick me up when I am down and I don't think I would cope without you all.  I am truly grateful to have found you, you are all marvellous! I'm finding radiotherapy a bit more of an emotional challenge than I was expecting and I've been trying to work out why (THIS is why it's not a good idea to be awake in the early hours!).  I think it stems from going to the hospital everyday and sitting nose to nose with other radiotherapy patients, for hours sometimes, as we wait on machines, and none of us are looking our best.  I think a lot of the patients are having head/neck radiotherapy judging from the redness and unshaved faces (seems to be lots of men in the waiting areas) and there have been some children there too with very obvious signs of chemo treatment so it has brought home to me how serious and miserable cancer can be in its various forms. Up to now the only other patients I've met have been in the breast clinic and very few had obvious signs of cancer.  Hopefully recognising what is making me feel low/emotional will help me to avoid meltdowns in future 🙂

 

I think it is a big week coming up for a lot of us - if I've got it right I think Cheryl starts radio tomorrow, Rose on Tuesday and Babtastic on Thursday so good luck to you all, let us know how you get on.  I think Sunflower has her planning session tomorrow, Happy Wanderer on Wednesday and Pandorra on Thursday so I'll look forward to swapping notes on tattoos with you all 😄

xx

Sharon

 

 

 

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Sharon, big respect, as they say! You are a strong lady. Don't know when I'll start my rads, on hold until I see the genetics team. If I do have to have it, my hospital is also 30 miles away and The parking is a nightmare. I can't drive at the moment. OH has a heart condition and I won't put him thro the stress of the return journey and parking hassles for 3 weeks. The hospital have said they will lay transport on with their volunteer drivers, such a relief. Hugs to all x
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Re: MARCHING together

Good Morning Ladies,

I am starting my radiotherapy on Thursday, 26 March, planning meeting a couple of weeks ago.   I was due to take part in the IMPORT HIGH trial but apparently the surgeon put the titanium clips in my lymph node surgery area, not the tumour bed so I don't qualify for the trial!  So, I will be having 20 sessions in total, 15 normal dose and 5 boost doses.  Bit of history, diagnosed October last year following routine mammogram, WLE of 11mm tumour and level 2 lymph node clearance in early November, good recovery apart from a bit of chording and an underarm wound infection.  Chemo started in Jan, due to have 3 FEC and 3 T, managed the 3 FEC but loads of SE's and allergic reactions so we decided, with my oncologist, that my body would not safely cope with the T so we stopped.  Difficult to adjust to, but onwards and upwards.  Damaged veins in my left arm as they are very small and the 2nd and 3rd FECS went in too slow, so burnt the veins.  Developed thrombophlebitis, so just finished antibiotics and steroid cream, arm stiff, sore and tender, but hoping it will improve soon, have been told 'it takes time'!

Having radiotherapy at a hospital 29 miles away, so it will be a bit of a mission, with major roadworks on the way thrown in, but the hospital have been good so far about my appointments being outside rush hour, so hopefully that will continue.  Have started using QV Intensive Ointment twice a day in preparation for Radiotherapy.  It has been interesting to read your posts so far, it's good to be able to share experiences with people going through the same thing at the same time. x x

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And... sense of humour intact! Good to see you're back, Sharon. (Feeling grateful I live way oop North, far away from the fallout zone...!!!) xx
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Thanks Rose, as you can see when I said I get a bit Diva-ish when the monthly hormones kick in, I really meant it! Heaven knows how bad it is going to get once I start the Tamoxifen - I expect the govt will start offering safe-shelter to everyone who knows me and will ask the doctors to bring on my menopause immediately! Smiley Tongue

 

xx

Sharon

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Fantastic! Well done for going back and you handled it perfectly. I expected nothing less of you!

xxxx

 

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Hi ladies,

 

Well, I did go back today for my appointment and to their credit they were brilliant.  One of the more junior staff members who I've met twice before took me aside and asked me what had happened and then went and got a superviser to talk to me too when she heard what I had to say.  Both of them handled it immaculately and I've been reassured to know that they will speak to the people who dealt with me yesterday and I've asked them not to make it a ticking off but a gentle reminder that they need to be more considerate with patients in future. They've also said that I can have all my future treatments on the machine I normally have and with at least one staff member that I've met before so that those sort of problems don't happen again.

 

The treatment today went perfectly and was all over in minutes - totally different to yesterday's treatment. Hugely relieved but feel a bit 'prima donna-ish' as I hate having to complain especially to people who are trying to help me.

 

As always, thanks for your wise advice and sorry for being such a diva 🙂

xx

Sharon

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I'm so sorry that they treated you so badly Sharon. I know the feeling of abandonment when you lie there.  They should indeed have come after you and comforted you. Please do complain, either to a sympathetic technician or to someone in charge. lots of xxx Margaret

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Re: MARCHING together

Sending you big virtual hugs Sharon. Take care xxx
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Thanks ladies, I'll see how I feel tomorrow.  The fact that I am hormonal and therefore my usual weepy mess at the moment and had a cold sore erupt yesterday isn't helping at all.  It's only the fourth cold sore I've ever had and the others have been at times of serious stress so I'm obviously more stressed and/or rundown than I had realised but even leaving that aside today was horrible.  Can't help wishing that some of them had to go through this themselves so they were a bit more aware of how their words and actions can make us feel 😞

xx

Sharon

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Hi Sharon How awful for you. Why didn't one of the staff come after you? As Rosemarie says you can get through this, you are strong. Go back tomorrow & complain about the the behaviour of the staff, otherwise they will continue to treat vulnerable patients in that way. Go girl, you have the strength Hugs sent your way xxxx
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Oh Sharon- you CAN and you WILL get through this! Remember how you overcame the MRI (I think it was) debacle? You triumphed over that one with style! This is another setback but remember this treatment is only short term, and according to my onc, improves survival by 10% over 10 years. Yup, TEN PER CENT. It'd be, with all due respect, silly to let this one experience- and I don't condone what happened in any way, it must have been hideous for you- take away this massive statistical improvement. Go back in tomorrow, you're nearly a third of the way through by session number, and show them you are better than them. And if you're unhappy with the treatment again, complain, complain, complain! 

Please don't give up

Love Rose xxxx

 

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Oh sharon, how dare they treat you like this! I have heard this before, a friend had similar, just once, but still not acceptable.  Problem is when you start to feel a bit down we lose our guard. So, on behalf of all us ladies, we are sending you strength, oodles of hugs, millions of kisses and tomorrow will be normal. Also, tell them to wise up!! Right I feel better now.  Take care special lady lol xxxxxxxx

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Re: MARCHING together

Evening all,

 

Oh dear, should have been session 7/25 today but I had a meltdown on the Linac and didn't go through with it 😞  My normal machine had broken down so I was moved to a different one and it was a thoroughly unpleasant experience being hauled around by the radiology staff.  Normally they are polite and very careful and considerate but today's lot left me feeling totally dehumanised as they pushed and shoved me around while talking over me for about 10-15 mins then went off for a little group whisper at the end of the scanner bed and then told me to get off so they could start again.  They didn't bother to lower the bed so I had to leap off it as my legs didn't reach the floor, bare boobs bouncing uncomfortably as I hit the lino.  By then I was crying so I just dressed and left, don't think I can carry on with this it's just too miserable 😞

 

Sorry for such a low post but that's how I feel today.

xx

Sharon

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Hi ladies, looks like will be an eventful week for us. Thanks Sharon for the run up, and thanks again for this invaluable thread you started. It feels like we all belong. Hope the skin is ok, have you tried e45, apparently it's the only one they like to be used where I go. Anyway, well done and lol xxxxxx

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Hi All I've got my planning meeting Monday 23 March at 2pm. I was supposed to be returning to work that day. Hubby wants to attend the appointment with me pm so I will ask my manager if I can work from home that morning and return to the office on Tuesday.
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Hi ladies,

 

The planning session was straightforward, very quick and has no side effects at all other than the tiny little tattoos.  I had to strip off my top half and stretch out on the CT scanning bed (I was on a sloping board).  I had a rest under my knees/shin bones plus arm rests to raise both arms above my head and then I basically stayed like that for about 10 mins while they drew on me with a felt tip and read out a load of numbers to each other.  It was a bit like a weather forecast really where the radiologists said things like "left 95.8 and 11 up, good coverage" and plotted where to shoot the rays.  Once they were happy they'd got the position right they made three tiny little tattoos which were basically just drops of ink on the skin followed by a tiny little scratch so that some of the ink went under the skin.  Two are on the sides of my body and the other in my cleavage and they are barely noticeable, smaller than most freckles.

 

It wasn't in the least bit painful and was over in minutes so nothing at all to worry about.  The only potential hiccup is delays in getting in to the planning session as it seems that at least one of the machines is down pretty much every time I go which creates a backlog on the other machines so take a good book or something to entertain yourself 🙂

 

Hope your sessions go smoothly and keep slathering on that cream!

xx

Sharon

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Re: MARCHING together

Hi
I'm going for my planning CT on Wed 25 March and when I phoned today and cheekily asked did they know when I would start they said 8 April due to Easter BH. but apart from that I'm not sue of the drill so like you Pandorra I would appreciate any info going.

Jane ☺️
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Re: MARCHING together

Hi lovely marching ladies, hope the skin isn't too bad, but I would have been like you Sharon and wondering if the machine was really working. Got my rads treatment planning appointment for Thursday 26th, can anyone fill me in on what happens, didn't take it all in when I met with my oncologist. Tatoo marks ring a bell!  l love the itinerary sharon, enjoy and eat cake!  Let us know how skin doing. Lol xxxxxxx

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Re: MARCHING together

Morning all 🙂

 

It was day 5/25 yesterday and I've FINALLY got a little reaction - underneath my skin is itching a little bit (odd feeling as it's not the skin surface but underneath that) and inside of boob is noticeably more tender. Bit relieved as I was beginning to wonder if they'd left the machine unplugged at the wall or something and I'd have to do it all again! Woman LOL

 

I'm off out with a friend to a Foundling Museum this morning before going to get zapped this afternoon and if they get me in and out in a reasonable time, we'll go on to the British Museum afterwards.  Love a day out (and an excuse for more coffee/cake)

 

Love the half deflated balloons idea Rose - ha ha ha! They'll need to be red or bright pink to reflect the reason we are celebrating but that is going to be some party isn't it! I'll probably be in a state of woe again though shortly afterwards as I get to grips with Tamoxifen.  Are you noticing any side effects from that yet (glad to hear you haven't developed a beard yet of course!)

 

xx

Sharon

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Re: MARCHING together

Ironically, when i booked the ticket ages ago, I described him as someone I had to see before he or I die - talk about tempting fate!

I'm also wearing a soft cotton bra day and night, and I feel reassured that you're also still suffering tenderness. After all they took two goes at mine, so it's probably quite normal, plus they had to scrape away up my chest wall 2nd time to ensure they got the little blighter.

I get an Easter break too, and since we finish so closely together, I'm already blowing up the virtual balloons for the forum party! (if they start deflating and go wrinkly and mis-shapen, so much the better!)

Keep in touch

Rose xxxx

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Ooh, Paul Simon, lucky you I'd love to see him!

 

I'm sorry your poor boob is still playing up, are you going to raise it with the BCN?  I would if I were you as that's what they are there for. I've definitely got some sensitivity around my treated boob, it feels very tender & lumpy and the nipple is sore so I'm still wearing a bra night and day to keep the movement minimal.  For the last week or so I've been able to see the 'wedge' they removed from my boob (depending on how well the lava lamp is performing!) but I'm assuming that's just normal as I've stopped wearing the surgical compression bras and moved on to soft cotton sports bra type things which are much less supportive so I guess gravity is doing it's thing.

 

I think I get Good Friday and Easter Monday off so due to finish on 16th April.  We'll be able to compare red patches 😄

 

I'm getting out and about a bit too but nothing as glam as Paul Simon.  Jealous? Me? Nooooooo!

xx

Sharon

 

 

 

 

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Hi again!

I didn't know about that choice. Still I think that means we'll finish about the same time? My last one is on 15th April, and they were so lovely about the appointments. They're all fixed for late afternoon, and on 13th I'm off to Manchester to see Paul Simon, so need to be on a train by lunchtime. The lovely young radiographer (who probably has never heard of Paul Simon and hadn't a clue what I was rambling on about!) Juggled the diary around and sorted it for me. Some poor person has probably received a random appt change to accommodate me!

I'm ok, also have the ever changing boob shape, though on a smaller scale than yours! My stitches are/were all around the nipple area and everything seemed fine up till today when they're itchy and the skin is a bit pink. (Seems so strange being able to talk openly about these things even after all we've been through!). Also do you still get soreness within the breast? I still can't lie on that side comfortably and heavy clothing seems to "drag" on it. I never know whether or not to raise enquiries about these things cos it may all be normal.

Getting as much done this week as possible, meal out with friends tomorrow night, day with old school friend Wednesday, nice week ahead before I get tied to a radiographer's couch!

Keep up with the daily reports, I like to  read them

Love

Rose xx

 

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Hi Rose 🙂

 

The quick answer is that I haven't a clue!  My brother-in-law is a radiologist/radiographer of sorts (never know what they are actually called) and he says that 'low and slow' is the tried and tested way and although the shorter, high dose sessions are supposed to be just as effective, they haven't been used for as long so are not as well tested.  I asked for low and slow on that basis but without a boost treatment.

 

You still doing OK?

xx

Sharon

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Hi Sharon!

Quick question- why do you have 25 sessions? The majority seem to have 15.

Glad it's going ok for you.

Haven't we come a long way since the early quivery days!

Love 

Rose xx

 

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Evening all 🙂

 

OK so 4/25 done now and still no reaction of any kind other than boredom from hanging around waiting on malfunctioning machinery.  Not even a hint of crispy red skin and no change in sensation at all.  Nada.  It's a good thing I've got an Amazing Shape Changing Boob to entertain me each day or I'd be bored witless by now.  Boob is like one of those lava lamps as it gently undulates from one shape to the next, quite fascinating actually, but it's been doing that since the surgery and I don't think the radiation is making any difference Woman Surprised

 

Anybody else starting soon?

xx

Sharon

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Hi Sharon, 

as I understand it Tamoxifen, unlike Anastrozole, only targets the absorption of oestragen by the breast. Elsewhere it does not. I can not imagine why it would make your hair fall out or grow on the chin. Having used it for 2 weeks (prior to my radiotherapy and then stopped) I found that I was having hot flushes again in spite of being menopausal for years and not having had that experience for ages. I read somewhere that it actually increases production of oestragen in general.

Personally on to my 5th session today. The staff at the hospital has accepted that I use creams after the session, and wash it all off in the morning before the session. In spite of losing the felt pen markings which they pretty crudely and upsettingly reapply in the worst part of the scarring, a huge cross.

Oh well, will give them some eggs we have spare this morning, (we have 8 chickens)  maybe that'll help her (it's just one that's horrid) bad temper.

Very grateful to you all ladies. Read all your posts avidly. Makes me feel less alone in the French world of radiotherapy.

Oh, visited it a 'barreur de feu' yesterday, advised to by the French patients, it is someone who uses 'magnetism passes' to prevent/cure any burning. Nice guy, we'll see if it works, so far just a bit sore, not pink or red.

xxxx

Margaret

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Evening all 🙂

 

Second zapping today went well as I turned up half an hour early and got straight in so I was done and out before my appointment time.  The radiotherapy staff were lovely too so it's all good. Still no sign of any interesting side effects though *taps foot impatiently*

 

I read a little bit about the drug they're giving you Pandorra and although the side effects look scary when they're all written in a long list, I don't think they look much different to any of the other drugs so hopefully you'll not get too many, if any, problems and someone on the forum is bound to have found a solution even if you do need some help.

 

Rose I've put a little pocket mirror in my handbag so I can examine my chin reguarly for any signs of rogue hairs.  Not quite sure what I'll do if/when I find any mind as I don't own any tweezers...p'raps I could plait them and make it a style statement?

xx

Sharon

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Hi sharon, anastrozole is a cousin of letrozole and the side effects appear to be less than tamoxifen, who knows when we start it. Because I was negative and hadn't gone in lymph nodes, blood vessels etc, they say this is the best onevfor me. Also,  I had a grade 3 and a blessing it hadn't gone elsewhere. So tonight pop the pill, have told everyone in work to be prepared tomorrow who knows what we will be like!  Waiting for planning appt I am in essex, it's the only way, and have heard from others that seems to go well. However, I think we all know we have to go with the flow. As you have experienced machine breakdown it's not unusual is it. Hope all good today. Love to all xxxxxx

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Just to reassure you, Sharon, after a fortnight of taking them, no sign of a beard yet, and I have looked very closely! xxx

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Ah, your radiotherapy depts are obviously a lot more organised than mine.  If you count the planning session I've been to mine twice and both times they've been 90+ minutes late so that doesn't bode well for the future. Still, if ever there was a time to read those old classic novels I've been meaning to get to for years, I guess this is it 🙂

 

Glad you're all sorted now Pandorra.  Did your Oncologist explain why she chose that particular drug for you? I don't know anything about that one so I hope the side effects aren't too grim.  After Rose told me about the beard we can expect when taking Tamoxifen I've given up reading about the side effects or I'll talk myself out of even trying it (don't really understand how a drug can make the hair on my head fall out at the same time as causing hair to grow on my face but I suppose it's something to do with increase of male hormone at the same time as a decrease in female hormone.  Sigh.  Not easy this cancer malarkey is it!)

xx

Sharon

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Hi special ladies, well done sharon busy diary!  Met with my onc. Today and she is great. Didn't have to ask those worrying questions as she just covered everything. So, next step will get appt. For rads planning, 5 days a week for 3 weeks and I start Anastrozole tomorrow. Was given a tour of the oncology department, area where rads takes place and free parking!  It has helped talking with her in depth. Told to only use Simple shower gel and only E45 lotion. Read up on the side effects of Anastrozole and hope it likes my system!  Anyway, great we have our thread, thank you Sharon, Easy on the lotion. Lol xxxxxxx 

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Well done, Sharon- no 1 under your belt. Keep us informed how you go- no need to say that, really, is there? I know you will. We're relying on you! I see you have 25 sessions, I only have 15 so we'll probably finish at around the same time.

By the way, when I went for my planning meeting, i was given a schedule of all my appts from start to finish. I One area where my hospital scores for efficiency? (Makes a change...)

Love, Rose xx

 

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MARCHING together

Hello lovely March (and perhaps a few April?) radiotherapers....

 

So first session (1/25) done today and as expected, it was all a bit of an anticlimax as I haven't started to glow in the dark neither have I been granted a superpower. Although maybe that comes later? I'm hoping to avoid turning into The Hulk or the Invisible Man but wouldn't say no to mind-reading or time-travel as a superpower. Although come to think of it, invisibility would be cool too 🙂

 

Session took about 15 mins in total, most of it lining me up on the board, but had to wait an hour and forty minutes to get started as machine had broken.  Think I might be saying that a lot over the next month or so 😞  I was also surprised to learn that they only give appointment times a week in advance and some of them are distinctly odd (have a 6.30pm on Friday) but I guess it doesn't really matter since I'm not planning on doing much else for the foreseeable future.

 

Looking forward to hearing about your sessions too

xx

Sharon