Radiotherapy August 2019 🤗

[highlandmum3]

Hiya

Sorry to hear you've had to have another planning session.  I had my 4th session today after they were put back a week, spent the 3 weeks wait with a sick feeling in my stomach.  Seems to be going ok so far. After the awful planning meeting I had things explained when I had my 1st session, came out thinking 'was that it'.  Today I'd a review meeting with an oncologist where they find out how your feeling and getting on, discovered I should have been given at my planning meeting a patient's guide booklet giving all the info you need! Came away from the meeting a lot happier. Have also had the prescription for my letrozole tablets organised at my doctors. Oncologist said I can start them now or when my treatment has finished, it was up to me. Think I'll wait until afterwards.

Take care xx

[lizandsarah]

Hope everyone is getting on OK with their rads. 

I've had to have another planning session after session 7 due to the swelling I'm getting, as they need to redo all the settings on the machine. The level of swelling is similar to post surgery, but is an inflammatory response that happens apparently. 

Who said rads were straightforward! 

[lizandsarah]

Hi Highlandmum3,

Sounds like a horrible experience, I've been given a sheet of exam couch paper to cover myself, likewise am well endowed, but I was told I could have a gown if I wanted that I can bring every day.

I've felt very exposed in the rads room as there are three cameras.. I've asked not to have male staff if at all possible. However I've found the staff in radiology so much more friendly and helpful than the chemo unit. They all apologise for their cold hands and room but with the hot flushes I really don't mind! 

It's a shame you have a delay in starting and how distressing this is (I've had this earlier in my treatment plan) , but it sounds like they just want to be safe, a week in my skin is already pink, hot and swollen so I can understand why they want you checked out.

I spent my 50th birthday in hospital unexpectedly during chemo and it is upsetting, but getting the right treatment is essential to reduce the risk of recurrence.

They didn't take my photo, but I'm starting to feel like a parrot with my date of birth and Address.

I haven't had tattoos, I refused so they are using permanent markers and clear dressings to protect them. 

Good luck 

Liz

[Libby03]

Really sympathise with you, with the waiting to start radiotherapy. I had my planning scan on the 5th as well and the consultant had said we'll get you in as soon as possible hopefully to start the 19th at the latest.  But the lady in radiotherapy said it would be the last week in August before I could start as they are booked up. I just want to get it over with. 

[Susanmanchester]

Just had first session . No stress no pain all over in 30 minutes . Total walk in the park compared to chemo hurrah 14 to go ! 

[Dogwalker]

I quite like the radiotherapy being "business like", rather than being fussed over and treated like some sort of delicate creature. It is a straightforward procedure so there's no need for any undue fuss. And I don't mind who does it, or if it's different people each day as long as they are good at their job. I've had 11 sessions so far, with 4 more to go and have suffered no problems at all apart from a slight reddening of my skin. The tattoos are practically invisible.

[3331melanie]

Hi

its quite possible you won’t. I haven't seen anyone from the planning session but am starting to see familiar faces which is nice and I’m getting lined up in the machine quicker now 😊.

I didn’t need chemo either, which I’m grateful for, however that doesn’t diminish the psychological and emotional aspect of the diagnosis and treatment.  

Im having 20 sessions and 10 years of tamoxifen. Just done number 6. Boob a little punk today but ok.

Mel x

[highlandmum3]

Thanks Mel for replying, I'm having 15 sessions followed by 5 years of letrozole. Spoke to my BCN and she said there's the chance I might not get the same radiotherapist at each session so will wait and see. 

Should really be looking on the positive side as I didn't require chemo. 

[3331melanie]

Hi highlandmum3

sorry to hear about your experience at your planning meeting and don’t apologise for ranting! This is the place to do it - we all understand!  Looking back on mine it was all rather business like but the staff were kind to be fair. I don’t like the sound of just having a pillow case to maintain your dignity. I change into a gown that has press studs so only the treated breast is exposed. I didn’t get a choice the the tattoos either and was given the permanent ones - not too noticeable for me. They did take a photo of me for I’d purposes too - wasn’t expecting that! I’m going for session 6 today. All the staff I’ve met have been lovely. I have had 2 male radiotherapists so far and both have been respectful and treated me with dignity.

Really frustrating your treatment has been delayed by a week - how many are you having? So far I have found the sessions ok just seem t have a hyper sensitive nipple now. I wish you well for your treatment - I’ve found it easier than the planning session. Hope you do to.

hugs Mel x

[highlandmum3]

Hello everyone

Had my planning meeting on the 5th and was given my appointment card for my first session to start on the 19th, after finding compassionate and caring staff in the other departments of the hospital I'm attending I found the 2 radiotherapists very business like and cold, it was a female who checked all my details and did tell me there was 2 of them what she didn't say was the other one was male and for some unknown reason this took me by surprise! Haven't a clue why 🤷‍♀️

It was the male one who did all the talking.  Was given a pillowcase to 'hide my modesty' so he said, didn't cover much since I'm big busted and when I lay down on the table gravity took over! So nothing was covered. He then questioned the colour of the breast as it has been left a bit reddy/pink after my op, didn't worry my surgeon or the breast care nurses but he decided to have a doctor look at it, she didn't have a problem with it.  The only good thing about the whole experience was I was able to hold my breath for the 20 secs, cancer was in left breast.

Didn't get an option as to what kind of tattoos I wanted, the 2 at the sides I can't see but the one at the front is at the top of my cleavage and looks like a blackhead!

On Tuesday of this week I'd a message left asking me to phone the department and couldn't believe it when I was told my sessions were being delayed by a week, was told a consultant was on holiday! Was disappointed about that as my birthday is in September and the thing keeping me going was the radiotherapy was going to be finished before my birthday now it's not. 

So sorry for the long and ranting post but up until my radiotherapy planning meeting I'd been in a positive mood and taking it in my stride but because of this guys attitude I'm now dreading it. 

Random question did you all have a photo taken for ID purposes, your face, not your boobs! 🤣😂

[lizandsarah]

Evening ladies, 

I've had my planning scan, look like I could be be used as target 🎯 practice with **bleep** crosses across my chest!! I'm not having permanent tattoos by choice.

I start 20 sessions in the morning. I've also booked into some art and yoga sessions at Maggies during radiotherapy as my family are away. I've never really been any good at art, but thought it sounded fun. If I don't progress from stick figures, then that's OK as well (it was good enough for Lowry)!!!

Good luck on this part of the journey

[3331melanie]

Hi Louann

Lovely to hear from you - we were both on the May surgery thread. Pleased you are finally starting rads. I’ve had my second today. So far I’m finding it ok. I’m more tired from my tamoxifen. Let me know how you get on.

Mel xx

[Louann]

Hi everyone, I will be starting rads on 22nd August. I am having 15 sessions I will finish on 13th September. I hope you don’t mind me joining you on this part of the journey. Xx

[3331melanie]

Hi DiKat

How lovely you only have 3 to go after your long journey! So pleased it’s nearly over for you. The staff are fantastic. It is a shame we are not there at the same time. I’m already thinking by next Friday I will be just about half way through 😊.Hope your last 3 go well and you haven’t experienced too many side effects xxx

[DiKat]

Hi Mel

Just popped in to say glad your first session went well. The staff are all lovely aren’t they. Someone was ringing the bell when I had my first session so I was sat there in tears 😭 I have 3 more left after today. It’s a shame mine are later in the day, would have been lovely to say hi. Good luck, will be done before you know it xx

[Avalily]

Hi Melanie

I also had my first session today a lot quicker than I thought.  I am having a total of 15 , finish last week in August.  Have to have herceptine injection every three weeks ending May 2020.  

[3331melanie]

Hi everyone. Had my first rads today - 1 down 19 to go. All the staff were lovely and reassuring. Felt quite humbled really as there were obviously people with far more advanced disease than me. Lovely to see someone ring the bell to signal the end of his treatment.

best wishes to everyone x

[Wonky]

Hi all, great thread, thanks. Just completed 6th rad, 14 to go and to be honest although its 'ground hog day' I'm doing better than I thought I would. Mainly due to incredible staff at rads. Not sure if it is stress ( musn't be late!!!) or normal, but is anyone else feeling a bit ' displaced from reality', a bit Wonky? 

[Daylightdancer666]

Hey all, 

I had radiotherapy five blasts to my skull and neck due to cancer spread there and I've had some hair thinning anyone know what they say about cutting and dying hair after radiotherapy thank you xxx

[3331melanie]

Hi everyone.

Im starting radiotherapy this Thursday. Three weeks to full great then a weeks boost to tumor cavity.

Good luck to everyone starting.

Mel

[interestingtimes]

HI all,

Lizandsarah I had my scan and markings yesterday. They were running late so it took about an hour. I am in Portsmouth and they gave me a parking ticket for the duration of treatment so I only have to pay the minimum fare. 

Regarding pate etc. I was told I could eat those at the end of the last chemo cycle (so end of week 3) and resume normal activities like swimming 4 weeks after the last chemo dose to give the picc insertion point time to heal. 

I was recommended to use E45 cream so am hoping that will do the trick. 

Good luck to all due to start and sorry to hear about some of the yucky side effects for some.

Sharon 

[Daylightdancer666]

Hey ladies 

How are. You all 

Well I finished. My. Radiotherapy not this this Thursday Thursday before and unfortunately had tough time with after effects. I've. Jsd five sessions of. Radiotherapy from. Neck and skull. I've. Los my. Taste buds had oral. Thrush sore. Mouth feeling. Sick

Fortunately I'm on treatment now for my. Oral. Thrush on tongue, my. Sore mouth is subsiding has anyone had loss off taste buds and if so when did it come back?  That I'm finding infuriating I had sausages spaghetti hoops and potato. Waffles. For. Breakfast. Yesterday had bite of sausage slightly tasted it and went. Away 😞 I've also been feeling sick, in fact was sick last Thursday night but only. Once but on anti sickness tablers which arr brilliant. I was given some while. In hospital. And. Got. Different brand when went. Hospital one stronger another, both make.you drowsy but. Manageable other one i take. Night cause knocks. Me. Out

I too noticed. My hair thinning ghougg4dje warned my Consulant still. Was upset. Tbh but my hair dresser said she could. Sort. It 

However apart.from the questions in this post. Of. mine how. Long. Do these side effects alll last of radiotherepy 

Xxc

[denzel]

I went for my CT planning on Monday in Edinburgh. Parking available for all patients. So no stress or worry about being late. My appointment was for 3:30. I was seen by a radiographer first to go over personal details etc and given bit of information on what to expect. Taken through for CT which I have to say made me feel a bit like a rat on a dissecting table as your arms are in stirrups above your head with a knee block under knees. I got 3 small dots tattooed onto my skin which was like a small scrape but nothing painful.  I had to have someone check out my wound. So the whole thing to 35 minutes in total. unfortunately as my wound is still not healed I can’t get my radiotherapy. So I have to phone them when it is healed and they will organise this for me. Seems all pretty straightforward . 

[lizandsarah]

Hi ladies, 

Hope your planning scans went well, I'd be grateful to know how long they took so I can plan how much money to put in the parking machine!

My scan is on the 6th, my family are away for almost three weeks of my four rads so it gives me lots of time to rest and not worry about entertaining a child through the summer holidays. I'll probably nip to maggies each time for a cuppa and company as most of my friends are on holidays as well then! I've already asked the chemo unit when I can start eating all the goats cheese, pate and things they banned during chemo and its in my diary to have a visit to M&S food Hall for a few treats on the 16th!! 

I haven't got an exact start date yet, but the consultant did say it would only be a couple of days as I'm having temporary marking not permanent tattoos (my choice which the consultant was supportive of) which I'm grateful for. 

I'm stocked up on Aveeno from the GP as well as my skins very dry from chemo and I want to get it as good as it can be before rads start. 

Good luck for the next few weeks

Liz x

[denzel]

Hi everyone,

I am meant to be starting radiotherapy in August too so this is nice to have a group of people to share experiences with. I have my planning this Monday the 22nd but I’m a bit anxious as my wound is still not fully healed but my BCN and consultant have said to go ahead to planning as there is a further 10 days in between before the actual radiotherapy sessions start. What exactly happens at the planning apart from CT scan.

[interestingtimes]

Hello ladies,

lizandsarah - we are on the April chemo group together! I too will be starting rads in August. I've met my consultant and she was lovely. I still have 2 chemo sessions to go (one later today) but this time 6 weeks I will be having my first rads! We got this ladies!

Sharon 

[lizandsarah]

Hi Wannabee Diva, 

Thanks for joining thread, I hope you have a great time at the wedding and good luck with rad sessions

X

[WannaBeeDiva]

Hello, I’m starting RT in August after my son’s wedding....... I’m 2 weeks post last chemo with my planning session due 19th July. 🐝

[Anna_BCC]

Hi lizandsarah

This is a great idea.  Thank you for starting it off.  I feel sure that nearer the time this will become a lot busier with people sharing their experiences.

Best wishes
Anna
Digital Community Officer

[lizandsarah]

Hi folks, 

I'm starting radiotherapy in August 2019 and thought I'd start a monthly thread.

I've already met my consultant, and been consented. I am having three weeks to breast and nodes, then a week boost to the tumour bed.

It was all so much less scary than any appt with surgeon or oncologist. 

If anyone has issues with the permanent tattoos, raise it at the first discussion. My consultant was completely understanding and is going to use permanent marker instead.