Hi Greeny80,  sorry I seem to have missed replying to your last message. It's hard to know the side effects of the phesgo, as been having them since starting docetaxel. I have been haveing few issues with diarrhoea, but hoping this will stop them chemo finishes. Just hoping it's not the phesgo causing it, we shall see. I hit a bit of a dip with energy levels the last couple days, hope this will improve in the next few   days. Ultrasound really went well which I was really pleased about. Apparently tumours are now vague, which is a hood sign. The area showing cell is no longer visible and lymph node area has shown good improvement. Have an mri on Tuesday, then see the surgeon the 25th. Will be good to have a plan moving forward. Pleased to hear you are now feeling back to normal and your energy levels are now good. Have a lovely trip away to the Isle of Wight and enjoy yourself. Xxx

Hi Pippin

I saw the radiotherapy team last week and they said I will definitely be on annual check-ups for the next 5 years.  The letter I got was a standard one and they did say it was quite confusing.  But definitely annual!  CT scan went well, the breathing technique we practiced for radiotherapy is quite tricky!  You really have to expand your lungs which stretches your ribs.  They were quite sore afterwards.  They gave me a little screen (on a mobile phone) where there was a yellow line at the bottom and a white bar across the top.  I had to breathe in until that yellow line moved into the white bar and the yellow line turned green.  I then had to focus on keeping it green while holding my breath.  It's amazing how much it moved around, even though you think you're not breathing at all!  Once again the team were lovely and we did have a chuckle.  As the hospital is a teaching hospital, they asked if I would mind having students observe (male and female) treatment.  I said that was fine, I've had my baps out so many times now it's barely embarrassing any more.  It's just another piece of anatomy to them I guess.  Anyway, first radio treatment is on 29th July and then daily for 9 days (excluding weekends).  I have been advised to start moisturising my boobs now and continue during and after treatment.  Apparently it should help with any skin side effects. 

Bloods today in preparation for Thursday's immuno session. 

Have you had your surgical appointment yet? 

How's everyone else doing? 

xx

Hi Carol, I'm just loving your sense of humour, you saying about getting your baps out did make me laugh. You are right though, you end up getting them out so often, you stop being embarrassed. Good to hear they confirmed that your check ups will be annual, three years is definitely too long. The breathing for radiotherapy seems a bit of a faff, just getting the technique right I suppose. I bet you can't wait to get this next stage finished. I'm quite envious,  as I've still such a long way to go. I am beginning to realise that my holiday in September will have to be cancelled, a shame as I could really do with a holiday. How often do you have to have the immune treatment and do you have to have blood tests before them all?  I was surprised when told to book a blood test before next phesgo injection, as I'm sure they previously said it wouldn't be necessary everytime. A bit annoying if that's the case, will just have to wait and see. What moisturiser did they recommend that you use while on radiotherapy? I had my mri today and have an appointment with surgeon (or one of her team, so the letter says) next week. I'm really hoping it is the surgeon herself, as she was lovely and very reassuring when I saw her last time. I really am starting to feel a bit nervous about the surgery, but will hopefully feel better once I know the plan. Good luck with everything on the 29th, hope it all goes well. Xx

Would love to hear how everyone else is doing too. Xx

Hi Pippin

I'm glad I can make you laugh.  I know how tough the journey is that you're on.  But you're doing great.  Chemo is done right?  And that is the worst stage of all. 

I have immunotherapy every 6 weeks and yes, I need to do bloods 2 days before treatment.  I then normally see or have a telephone call with my consultant or one of his team to check I'm ok and for them to authorise my treatment for the Thursday, based on blood test results.  That's annoying re the phesgo blood tests, especially as they originally said you wouldn't have to have them. 

That's such a shame re your holiday.   I had to do the same earlier this year - and we had planned a special holiday as it was my 60th.  But never mind, I'll do it for my 61st instead.  But like you, I could do with a proper holiday and see some sunshine!  

They recommend a moisturiser without paraffin products such as Aveeno.  They do list the ingredients to avoid but for the life of me I can't remember them.  As soon as they said I could use Aveeno, I just went for that.  

How did you get on with your MRI?  I had to take diazapam for my second one as I got in such a state during the first one!  I didn't realise I was claustrophobic until that first MRI.  Horrid things.  And you're in there so long!  When I went for the second one, I had no hair, lashes or eyebrows and had drawn on my eyebrows, totally forgetting that you lie face down.  When I was finished and sat up, my eyebrows were left on the frame where you place your face.  It was too funny.  They assured me it wasn't the worst thing they'd seen left on there (I didn't dare ask!!). 

Good luck with your appointment next week.  I really hope you see the surgeon herself.  I was lucky enough to see my surgeon a couple of times prior to surgery, then saw one of his team post surgery for check-up.  I'll let you know how the 29th goes. 

xx

Yes chemo is over and surgery the next hurdle. I have a telephone appointment before next phesgo injection, so will mention about the blood tests and see what they say. I was fine with the mri, listened to a bit of michael bible. Also imagined myself on holiday at our favourite place, actually felt quite relaxed. I just had to run and check my eyebrows in the mirror, after your story, they were fine lol! Will keep you posted in how appointment goes with the surgeon. Enjoy the rest of your week, I think the weather supposed to be getting warmer. Xx

Hi ladies!

Sorry for slight radio silence...we managed to get away to Isle of Wight for a couple of days which was lots of fun. We have also just booked to go to Barcelona for a long weekend on Saturday before all my radiotherapy starts. Carol1964  I start my radio on the 29th too. I've got 15 rounds so 3 weeks in total...so yes wanted to escape for a few days whilst i feel good!

I've got my radiotherapy planning appt tomorrow - so your message was super helpful Carol about the light and the breathing etc. Did you get your tattoos then too? Good to know what i've got in store. I also chatted about moisturiser etc and said that i used Aveeno and they were very happy with that. I've got the moisturisier and the body wash so am trying to lather myself up before the radio as hopefully that will help with any dry skin/blistering etc..

I"ve got my first Zoladex injection tomorrow too - not really looking forward to that,..its the implant injection which basically shuts my overaries down so medical menopause here we come! They say side effects from that won't start for 2 weeks but hoping they will be minimal! I have to have those every month for 2 years i think...and then i start anastrozole in a couple of weeks....and then other drugs in September. I'm going to be rattling around with pills before too long!!! URGHH hate the idea of taking so many pills...but i guess it's got to be done!

Pippin - so happy you've finished chemo too! Hurrah!!!!...and hope your appt goes ok ahead of your surgery. Do you have a date for the surgery? Sorry if i've missed that. Will you have radiotherapy after your surgery? Hope the Phesgo injections are going ok too...

Sending lots of love xx

Hhi Greeny80, good to hear that you now have plan in place for the next phase. Pleased to hear you had a lovely break in the Isle of Wight and good idea booking a short break to Barcelona  before starting your radiotherapy. Think we might try and get away for a couple of days before surgery. Unfortunately, will probably need to cancel our holiday to Gran Canaria in September, which is disappointing. My ct scan last week showed good improvement, which I'm happy about  I had an mri yesterday and see the surgeon on the 25th July, I hope I will then be given a date for surgery. I'm feeling nervous now about the surgery and also worried about recovery period. Still such a long road ahead, as need radiotherapy too. Still, I have to stay positive and just get on with it I suppose. Good luck with your radiotherapy and enjoy your trip to Barcelona. Xx

Hi Greeny

Good to hear from you and so glad you managed to get away for a few days.  I love the Isle of Wight, used to go there quite a lot when we were kids.  Barcelona sounds amazing too! 

Ooh radiotherapy starting on the same day - we can compare notes lol.  Glad my message was helpful - hope today's planning session goes well.  They don't do tattoos any more apparently, so no tattoo for me :)  And yep, definitely keep up the Aveeno, I'm glad they're all on the same page about Aveeno lol.  It feels odd moisturising my boobs, I remember in the mornings, but frequently forget in the evenings!  It's not something I've ever done before.  

Good luck with the Zoladex injection.  Here's hoping the side effects are minimal and manageable.  I am dreading starting the Ibandronic acid.  I'm apprehensive about side effects plus the impact on daily life for 3 years.  I have to take them on an empty stomach first thing in the morning with a minimum of 200ml of water.  Stay upright (either standing or sitting) for at least 30 minutes and wait at least 30-60 minutes before I can take any other medication or eat anything. I'm already on Levothyroxine where I have to wait an hour after taking them before I can eat, so that's 2 hours in the morning before I can have breakfast!!  That never used to be an issue for me, but since treatment I feel quite nauseous if I don't eat within about an hour of getting up. There is apparently a 6 monthly infusion as an option, so I might ask to talk a bit more about that as an option.  It would be less invasive to daily life that's for sure.  I don't think they will consider it though until I've at least tried the tablets. 

Good luck with everything today! 

xx

PS - the dog was terrified I was going to wash her and hang her up with everything else lol.