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
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.
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.
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
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?
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.
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.
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
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!
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.
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.
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
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
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.
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
My first session tomorrow has been cancelled as a machine has broken.
Is this a regular occurance?
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!
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.
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
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.
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