April Showers - Radiotherapy

[MrsGoggins]

Hi Rosemaryanne.....thank goodness I am not alone but then at least I make it easy for people as its both of mine!!! Someone today did actually dare to articulate that they were humungous before! Hadn't realised I was such a spectacle x

[Rosemaryanne]

Quick response to your last paragraph: I feel I should wear a badge stating"It's the left one" as i can feel the unspoken speculation! xx

[MrsGoggins]

Hi all

Thank you all so much for just sharing the 'day to day' stuff of this process. I feel so much better after reading all your replies.  I can agree with so much that is said although I have not yet started rads, was told it 'had' to start by 2 May (to meet targets, nothing clinical!) so expecting a call next week.  I am still working full time in our very busy village shop and peoples response to our situation has been amazing.  However, it is tiring to keep explaining what has happened and what is about to happen.  Yes I do feel that I have to explain why I am not having chemo...it's not a simple reason - I have Coronary Heart Disease following a heart attack so am exceptionally grateful that tumour was on right breast, I also had Acute Cholecystitis, both conditions have left me too vulnerable to have chemo. So the decision to 'decline' was bit of a no brainer  and my oncologist is very grateful that I have not insisted on putting us all through the process.  As you can imagine this has left my head in a bit of a mess wondering all the what if's of not having part of the treatment and what this might mean for the future.

On the upside I seem to have a most wonderful hospital in Torbay who have in all my conditions excelled at patient care including free, easy parking for each department that you are undergoing treatment through. For the Breast Care Unit and Oncology you just park and nip in for a pass to cover your visit.  I know already that I will have an appointment with my Oncologist following rads to review me.  He has included me in all letters to other professionals not that I am completely au fait with the jargon and to be honest researching some of the pathology report rather alarmed me in terms of prognosis.  

I do apologise for this very long post but feel that it is important to share some of the postives of the NHS process so that you might be able to share ideas with your hospitals if things are not as good as they could be. One idea I will be sharing is the 'modesty gown' as I simply had to strip off in front of 4 people in the CT scanner room for my planning session - I know I have probably shared my breasts with most of Devon this past two months but living and working in a small community where everyone says they shop in my shop makes me feel slightly awkward to say the least!

Has anyone else noticed that people now talk to their breasts when asking how you are?  

Lots of hugs to everyone.

Katie

x

[Jaye]

Hi Fuffs

Sorry to hear you had to have a second WLE, I was lucky to get away with one and my nodes were clear too.

You've got quite a bit of travelling to do, but it probably won't be too bad if you're using transport,

When do you start, do you know?

It is a very busy hospital but there was only two days when I had to wait more than half an hour so it wasn't too bad.   They have 4 or 5 machines so sometimes swap you over if one is running late or broken.

Make sure you cream once you've healed from your op,  they recommend aqueous cream.

Best wishes

Jaye x

[Jaye]

Hi AG

Yes I'm thinking of ringing BCN to see when I get a check up.

Make sure you drink plenty of water, I found that helped with the feeling strange after treatment.  I drank water in the waiting room and then a small bottle as soon as I came out, it seems to help as rads dehydrate you.

I started using cream a couple of weeks before I started and was lucky I didn't get burnt too badly.

All the best

Jaye x

[Hawkeye]

I know exactly how you feel, I can be having an off day and feel guilty for feeling sorry for myself when there are people who are going through a worse time. I have a pub so am still working, it doesn't stop and of course you have to paint the smile on when you're crying inside because no one really understands unless they've been through it. I can't believe how many people have said how well I look since I have been diagnosed, but if I put the slap on and tell myself to "sparkle" before I face the public it's amazing what you can hide. I have my first treatment on Monday and still have a wound being packed daily where I ruptured so next week will be all medical appointments (deep joy).

Thanks for listening all and have a great weekend off. xx

[Nenya]

Hope everyone having a relaxing day off, what a relief not having to travel for two days 😀
Does anyone else feel like they are apologising for not having chemo? I sometimes think people think you aren't really that poorly if you're 'only' doing radiotherapy. I called in at work yesterday and told everyone that I'm ok. Why do we lie? Mind I don't think people really want to know how you are. I texted my buddy later and confessed that I was s.h.**e in mind and body. She said she knew, so I think we only kidding the ones who really don't know us. Nice to have good buddies tho. Nice and sunny out, hope it keeps up. Sending hugs to everyone xxxx 😘

[Fuffs123]

Hi Jaye

Yep I'm not expecting a great experience for the rads at LRI! Will be having to use the hospital transport system too, so think it may be a tiring time! Parking is awful there. We live in Uppingham, so bit of a trek. Still i'm grateful for the excellent treatment I've received so far. I have Grade 3 invasive, no nodes, Had two WLEs and am waiting for last one to heal before starting rads. I'm surprised they only have 18 month mammo after BC. As you say, a year seems to be the norm elsewhere. Any tips for getting thro the rads there?! X

[AG65]

Morning ladies

Had my 2nd session yesterday evening. Great time to go. Traffic was minimal and able to park easily. There was only one other person in the waiting room it was so peaceful. Came out feeling fine. We called at a friends for a cuppa on the way home. By the time we got in my breast was pink and swollen. Is this normal after only 2 sessions? Felt quite off as well. Woke up this morning and everything has settled back down again.

Quite surprised you had no follow up appointment Jaye. I have clinic on day 5 and also on my last day. I also will have a check up a few weeks after rads have finished. The day I was given my post op results in March I was given the appointment for my first mammogram March 2016. Why don't you ring your BCN to see if you should have had a check up?

[Jaye]

Hi Fluffs

Yes I found Glenfield great and a lovely surgeon.

Shame we have to go to  LRI for radiotherapy - a different experience.

Parking is a stressful experience all the queueing but no real complaints about the treatment.  I had quite a nice oncologist, think he was Spanish.

Only had one day when I was there for about 3 hours as I had to wait for a clinic appointment and it was a day when the queue for the car park was too long and I found a parking slot a few roads away, only to find you couldn't park there after 4pm and I arrived back at 4.15pm to a parking ticket.

Only downside of Glenfield is that they do follow up mammograms 18 months after op and reading the forum, most seem to get yearly check ups.

I walked out of hospital after last rad appointment, It would have been nice to have a final consultation with someone, even a rad nurse, it just felt strange.

It's now 13 months since my op and not sure when I get a check up appointment, I imagine it will probably be at the 18 month mark, about September this year.

Don't get me wrong, the treatment I received was good, but just feel it left me wondering when they are going to follow up with check ups.

Jaye x

[Fuffs123]

Hi Jaye. I'll be having my rads at LRI. Had great treatment at Glenfields and lovely surgeon but found the onc dept at LRI a very depressing experience! How did you find it?

[Sparkle-at-50]

Thank you was for nebsminty. I'm still getting the hang of the forum.

[Sparkle-at-50]

Thank you. Monday cancelled now also!
Sparkle xxx

[Jaye]

I had my rads last June and left sided below the nipple.  We weren't offered 'breath holding' at the hospital I went to.  Wish I had known about it when I had my rads.

AG, I love the idea of modesty gowns, it made me laugh - I went to Leicester Royal and wasn't offered a gown for radiotherapy.  You just went into the treatment room and there was a chair where you stripped to the waist and walked over to the treatment table lol.  

Jaye x

[Rosemaryanne]

And when this is all over we can meet up in Winking Willie's for haddock and chips! xx

[ollisj6]

Hi ladies I'm on 9/15 so not long to go very slight pink boob and quite tired but I think that is more from travelling than the treatment mine is right side and haven't had to hold my breath hope you all have a lovely weekend and enjoy the sunshine meeting up with rosemary again on Tuesday  for a coffee we had a lovely chat hope some of you other ladies can do the same love judi xx

[Jobey68]

Thanks for all the info lovely ladies, mine is right sided so I'm guessing I won't have to do the breath holding bit! Xx

[AG65]

I was told my planning would be done with and without holding my breath. As I was able to hold my breath with ease they only planned with me holding it. Don't think there is much difference to cost just a little extra time. I believe they only do the breathing technique on one machine here so that they don't have to train too many radiographers. My tumour was also quite deep. Anything that helps to protect me I will try!

[nebsminty]

Judith, I asked the radiographer only yesterday how many women have to do the breath holding. She replied that it was a subject that she was going to be discussing with others at a conference next month!

She said that it was currently only for women who have had tumours in the lower/inner quadrant of the left breast. When I said mine had been in the lower - outer - quadrant, then she said 'oh they must have changed their criteria already. I'm pleased about that'. Apparently it is something that they are thinking of offering up to all women with tumours in the left breast.

I don't think it would add to the costs of the treatment, they might just have to take a couple more planning images and they make more pen marks on you when they're about to do the treatment.

I have to hold my breath twice in both of the 2 positions they zap me from. Anything from a count to 10 to a count to 20

AG, that makes perfect sense to feel protected whilst you're sitting half naked in a waiting room. I'm lucky that you stay fully clothed until your name is called. Then you go into an individual changing room to strip off your top half and put on a gown before exiting via a separate door into an area that leads to the machine

[Judithvr6]

AG65. Interesting what you said about holding breath due to it being left side.

At the 'open evening' the radiographer showing us round specifically said you didn't need to hold your breath. But then she may have meant in general, for almost all treatments.

My DCIS was left side and deep against my chest wall so I'm thinking I may have to hold my breath. 20 seconds won't be an issue for me (famous last words).

I guess I'll find out at Monday's planning.

[AG65]

Nebsminty

the gown is made of a soft thick navy material. It has a full length zip up the front and each shoulder seam has Velcro fasteners. I feel well covered whilst sitting in the waiting room. Once I have laid down they undo the Velcro fasteners and the zip to position me and then they are able to partially cover up my good side. Once treatment is finished they just fasten me back up and I then get changed. The gown stays with me for the duration of the treatment and I can wash it if I want to.

[nebsminty]

Fuffs, I hope your get good results from your latest op. I ended up having 2 ops as well although for a slightly different reason. Whilst I was having chemo the tumour was shrinking quickly and so they put a little wire marker in - x marks the spot and all that! Then I had a WLE and SNB in January and due to a mistake being made when the removed tissue was xrayed, the marker got left behind. Unfortunately, as it was marking the site of the tumour where there could have been rogue cells lingering it had to come out. So I had another op in March to remove it. Fortunately I didn't have to wait for results like you but I have ended up with a slightly less 'pretty' scar than I had first time round.

Because I had to wait 6 weeks post first op for the breast tissue to calm down enough to do a mammogram to check for the marker, they ploughed on ahead with plans for rads and I had my ct planning appt and tattoos done in Feb. Then when things had calmed down after the second op I had another planning session but thankfully was able to stick with my original tattoos and didn't have any more 🙂

So I feel for you just wanting to get on with things

AG, I'm curiously to know what a modesty gown looks like?! I just imagine a hospital gown with a hole cut in it on the correct side? I've have to wear a gown to get me from the changing room to the machine where I just strip off to the waist. Once they've drawn out their measurements they do cover over my good side though.

Sparkle I have yet to experience a machine breaking down but I have seen on here that it's something that does happen regularly. I've been told that they're going to be servicing one of the machines one day next week and I'll either have to go in next Saturday morning or have a day added to the end of treatment instead

I hope you get started on Monday though, there's nothing worse than hanging around for treatment.

Talking of which, my session is not until 6.20 this eve so I'll get stuck in all the traffic trying to get there

[Jobey68]

Hi Fuffs123,
What a pain for you,I found it was bad enough and I only had to go through it once, my brain is totally fried as it is now! Feel so much better now that side of it is all over and have results and just keen to get on with the rest of now, we live in somerset by the way 😊 hope you get the right results this time and can get on with planning your trip down here! , love Jo ️Xx

[AG65]

Hi Kim68

I saw my oncologist on the 24 March. At this appointment I had a check up and discussed my results. They then discussed the next stage of treatment and the risks etc of having radiotherapy. I then signed the consent form. I also met the senior consultant as she likes to meet all her ladies and then a member from the radiotherapy dept who showed me photos of the machines and explained the treatment.

I had my planning on the 31st. I had a CT scan and they took lots of measurements. As the cancer was in my left breast they checked to see if I could hold my breath for 20 seconds as this offers some protection to my heart and lungs. I received my modesty gown which I will use for all the sessions. I should have been given my appointment times but the booking desk had closed for the day (it was after 5). I was able to state my preferred times.

I started yesterday so everything happened quickly.

Hope this helps x

[AG65]

Hi Fuffs123

Thank you for the welcome. Sorry to hear you have had such a bad week. Hope you are now able to move on and complete your treatment. I find this forum a big help to me x

[Fuffs123]

Hi Kim. Me too, now i've had my 2 nd and hopefully last WLE I've got to wait for results (another 2 weeks) before being referred again for rad planning. Fed up with the waiting. Really want to go and spend some time with my family in Somerset in May but can't plan anything, so frustrating. Bit of a down day but he ho, you lovely ladies keep me going. 😃😃

[Jobey68]

Thanks everyone, sounds like nothing is going to be happening any time soon then! 😉

[Rosemaryanne]

Thinking back, it may have been longer between onc and planning for me, too. Confused now, and can't find paperwork...This whole experience has fried my brain! xx

[Jaye]

Hi Jo

At the first oncology appointment he examined me and discussed treatment.  I then waited for an appointment to come through for my planning for radiotherapy.  I think that was about 3 or 4 weeks after I saw the onc,  After planning appointment I think radiotherapy started about a fortnight after.   Obviously it can vary from hospital to hospital.

Jaye x

[Rosemaryanne]

Hi

Not sure if it's the same everywhere, but I saw the onc, he ran through a load of statistics with me, answered questions, and got me to sign a consent form for rads. The following week i went in to meet the radiographers, had my photo taken(!), was shown around the department, given a CT scan, tattoos (tiny little things) and my tub of aqueous cream. It was a couple of weeks from then when treatment started.

Hope this helps?

Love, Rose xx

[Jobey68]

Can anyone give me some info on how the system works with radiotherapy? I'm due to see my oncologist on Tuesday and know I will be having some but don't know what to expect from this initial appointment, Ive read about planning scans and tattoos but do they happen then or at a later date? Any info would be much appreciated , many thanks Jo Xx

[Nenya]

Hi Jane, I'm usually at LA 2 and 3, i have to stay in main waiting room til called through 😞 appt at 2 today, got back home at 20 past 6, never ong on the countdown now 9 to go hurrah

[Sunflower57]

4th session done this am Have to say I don't suit morning appointments I did not feel well when I got to work My manager wanted to send me home, but I just wanted to sit quiet for a while Think I'll stick to afternoon appointments in future
Fluffs123 I've been watching that programme Back in Time for Dinner Very interesting how our foods have changed so much.

[Fuffs123]

Hi AG65. Just wanted to say welcome to the forum. It's been a real life saver to me and certainly a wonderful support and point of light relief when things are not going so well. Keep in touch. X

[Sparkle-at-50]

Hi

My first session tomorrow has been cancelled as a machine has broken.

Is this a regular occurance?

Sparkle xxx

[AG65]

Hi everyone hope all ok.

Had my first session today at Nottingham City Hospital. I was so worried that I wouldn't be able to hold my breath when they wanted me to but I was ok. Everyone was so friendly. I was also lucky as the rest of the appointments are in the evening apart from when I also have clinic appointments. This means the hubby won't have to come out of work to take me. My breast felt quite warm afterwards though.

Thanks to Sunflower and Nebsminty for the warm welcome.

I also have fond memories of Vesta curries. It was quite a treat at the time. I don't even like curry now!

[Fuffs123]

Hi Rose

I didn't know Vesta still were still going! They were really the first 'exotic' food we ever had in our house in the 60s. Also the chinese take aways, all very exciting then. Makes you laugh now, with everything we have on offer. I'm a real foody and unfortunately my waistline reflects it! I'm a comfort eater so having BC hasn't done me any favours there! Looking forward to us all meeting up sometime, must include some nice goodies to eat. Love Francine x

[happywanderer]

Hi Sue

Sorry you are having a rubbish time, sorry I have no answers but wanted to send you hugs and say I'm sure most of us have had or are having the same or similar thoughts. The team on the helpline or your breast cancer nurse may be able to help you with answers to you questions and there's a lot of ladies on the various forums here who have lots of knowledge. Have you contacted the helpline for a supported from their "Someone like you" service. They match you as closely as possible (age and diagnosis) with a telephone supporter. The volunteer has already travelled a similar path to yours. Very helpful.
Virtual hugs and best wishes
Jane x

[suebeehoney]

Hi Ladies,
Commenting on where I'm at today. I want to quit. I feel afraid of the long term side effects more than the cancer. My Radiologist says to fear the cancer more. Its a terrible death! Really now is he using a scare tactic on me? I feel like I don't want the heart risk 10-15years from now. Or lung issue or lymphoedema etc.
I'm sore when I lift my arm all the way back to my left shoulder blade! And my chest is prone to sun poisoning (blisters) so its beginning to hurt not itch. But yesterday was 11/28 so am I like a little bit pregnant ...meaning have I already done my body the damage I so fear? I wonder if there is any benefit from my 11 treatments if I quit? Sorry, I wish I was in a better place!
Sue

[nebsminty]

Hi sparkle, I'm having 3 weeks plus 1 week booster as well. I was told the boosters were because of my age (under 50) and the fact that the cancer was more likely to come back.

I've just had my 4th dose today so we're not too far apart 🙂

Hawkeye, I really enjoyed my trip to the hairdressers. Just having someone wash my hair and give me a head massage again was lovely. Since losing my hair I've discovered that I carry the bald look quite well 🙂 so I've decided to keep it ultra short for the summer.

I'm having rads at the Royal Marsden in Surrey in their fantastic radiotherapy unit. It's only a few years old and is like sitting in the foyer of a subterranean 4* hotel whilst you're waiting! So different to the rest of the hospital which is pretty dire.

[Sparkle-at-50]

Hi. Thanks to eileen728 for suggesting I join this forum.

I am due to start radiotherapy tomorrow. 3 normal (whatever that is) weeks and 1 boost week.

Have had planning and simulator scans. Will be going alone as hubby working but hospital is within easy walking distance so no parking worries like some of the ladies on here.

Sparkle xxx

[happywanderer]

Hi nenya
Might get to see you at some appointments if we are in the same waiting area. I'm in waiting area for machines LA 8 & 9. I have short dark hair.

Jane x

[Rosemaryanne]

Hi Francine

Hope you're recovering well, and preparing for the next round?

The mention of Vesta made me smile- I used to make the beef curry for my dad, rice arranged in a ring, curry in the middle. My husband insists I always keep a Vesta Chow Mein in the cupboard to this day!

Meeting up will probably be a while in the planning, so don't rule yourself out. And you are more than welcome to attend the virtual party!

Love, Rose xx

PS I have started a new thread inviting people to post where they are being treated to make individual meet-ups easier

[Fuffs123]

Hi all. Back home from my op which went OK apart from very high blood pressure before during and after, was in recovery for a long time, so OH was panicking. More amazing treatment from Glenfield Hosp in Leicester. The nursing care ther was in my opinion superior to the private hospital where I had my ear op on Monday. NHS, big appreciation, fed up of people slagging it off. Now which of the political parties will stand up and protect it.?

Anyway doc says I should be able to start my rads in a couple of weeks so hopefully I can get my planning meeting organised now. Still have the bone scan to do later this month and genetics appt in May. Love the idea of meeting up in London, never miss an excuse to go back to my home town! I will have to be an honorary guest, as I'm not been zapped yet (feel rather left out in the crazy way that BC gets you, lol) By the way, talking about party food, just watched a programme on BBC1 on food in the 50s, 60s etc and they were eating Vesta freeze dried currys. Anyone old enough to remember them like me ?!!! Hugs to all. Francine xx

[13gerbera]

Hi all, I'm at University College London Hospital.  Hawkeye I think our lovely Pandorra might be somewhere near you so hopefully she'll pop up on the board again soon.

xx

Sharon

[Hawkeye]

Anyone being done at Queens in Romford?

[Sunflower57]

Good idea Rosemary I'm being treated at the Kent & Canterbury Hospital which is in Canterbury. I work in Ashford & live in Dymchurch 5 minutes walk from the sea & the sandy beach.

[Rosemaryanne]

I just happened to notice that Judi was being treated at the same hospital as me, and as I only live 20 mins away, it was easy for me to pop up there and meet her after her treatment, then nip to Waitrose to kill the hour from then until my appt. We arranged it on here. I don't talk to anyone usually at the hospital, just get sent to wait outside my treatment room (like being outside the headmistress's office!), so sit reading while i wait. Perhaps we should all say where we are being treated and a few more meets might happen? It was so very nice to meet Judi, I heartily recommend it!

Love, Rose xx

[Sunflower57]

Session 3 done today Funny I didn't feel like sleeping today Nibsminty, I know what you mean about the 'bed' not being comfortable, but I can sleep anywhere.
Rosemary & Judi Glad to hear you enjoyed your meet up. I haven't seen anyone whilst at my appointments, just me in the waiting room. Although I was warned to make sure I don't get up when they called another Clark!!
AG65 You will find a lot of support & advice on this forum. I've just counted the weeks since my mammogram - 15 weeks. It's a lot to take on board isn't it. But at least the BC was caught early - my lump would not have been found via self-examination as it was right at the back. Keep us posted on your Rad treatments xx

[Nenya]

Hi Jane, yes 🙂 Mine have been between 3 and 4 up to now as I am relying on Firefly transport and they changed the times to suit. Early tomorrow at 2pm so I might get home before 6 🙂