Hi everyone, hope you all had a good weekend. How are you all doing at the moment? I'm starting my radiotherapy on Wednesday and will be so pleased to get it out of the way. My tummy wound is healing, albeit it slowly, hoping it will be healed by Christmas. Now all Christmas shopping is finished, thinking of starting the wrapping today. I usually have everyone to me at Christmas, but having a break this year and going to my daughter's. It will make a lovely change for me. What are you all doing over the festive period?

HI Pippin,

I am glad to hear that your wound is finally beginning to heal, albeit slowly. I had everyone to us for Christmas and New Year, but have now decided that it's time for the younger members of the family to pick up the cudgel. We are going to my son and his family, which we are looking forward to,

It'll be great to get to your radiotherapy, at long last and I hope that it all goes well.

Regards,

Jolamine xx

Hi Pippin,

You're probably feeling stressy this week because of the unknowns in starting radiotherapy. Once you get the first session over, it'll be a walk in the park for you, in comparison to all that you've been through before. It's certainly worth having a word with your breast care nurse today about the lump. In most cases this is just scar tissue, but you're best to make sure.

I was really scared of recurrence for the first few years after surgery. I attended various course and we formed some self-help groups after these courses finished. I found these a great help and, although I still worry from time to time, it is no longer an overawing concern. I have also lost a few friends to freak accidents in that time and have now decided that life is too short to let this fear take it over. I'm sure that you're missing your walks and being able to commune with nature, but it shouldn't be much longer before you can get back outdoors again.

Did you manage to start wrapping your presents yesterday. I have bought mine, but still have to wrap and post a lot of them.

Having all the family over for Christmas would certainly be too much for you this year. I'm glad to hear that your children have stepped up to the plate and that you'll be able to relax for once.

I shall be thinking of you tomorrow and I hope that it all goes well.

Regards,

Jolamine xx

Thanks for your reply Jolamine, I'm really not sure why I'm feeling so stressed out. I haven't contacted breast care nurse yet as I can't get to them to check it out, due to being at radiotherapy every day from tomorrow. I'm hoping I might get a follow up with the plastic surgeon at some point, haven't seen him since my surgery. He might be able to give me a bit of reassurance. They took my whole breast and 20 lymph modes that showed no cancer, so I know I shouldn't be worried, I feel a bit silly really. I find it hard to get my head round the fact I went through all that treatment feeling really positive, but now that cancer is gone I'm feeling anxious. Maybe as you say, I'll feel more settled once radiotherapy has started. I did manage to get all the wrapping done, so at least that's out of the way. I'm sure everyone has worries after going through so much. Good to hear that the various courses were helpful to you. I think I'll get onto that in the new year. I think it would be helpful to sit and chat to others, who have been through the same thing and know how you feel. Xx

Hi Pippin,

I am delighted to hear that all of your lymph nodes were clear - that in itself, must be a reassurance.

We work towards the end goal for so long, without realising how daunting things become, after all treatment is finished. I found one of the hardest parts was, when I was discharged after 5 years, and I felt that I had no safety blanket around me from my care team.

You're not being silly at all. You've been so positive all along, that you're bound to have a 'blip' - that's why we refer to the rollercoaster journey of a cancer diagnosis. Just go with the flow for now - your positivity will return.

If you contact the nurses now, the can make an appointment around your radiotherapy schedule, or even make one for when you're finished with it. It will get harder to get an appointment as the holidays approach.

I would highly recommend these courses for moving forward. You meet like-minded positive people, who are trying to restore normality to their lives.

Well done for getting all of your wrapping done - one less thing to worry about!

Will be thinking about you tomorrow.

Jolamine xx

Thank you so much for you reassuring words Jolamine. I will give the breast care nurse a ring, they may well be able to give me some reassurance over the phone. As you say it's just a blip, I definitely need to get back to my walking. I'm also wondering if the new tablets could be affecting me a bit. I'm not sleeping so well, due to the hot flushes returning, since starting letrazole. I feel better already, now that I've decided to make the phone call, so thank you for that. Xx

Hi Pippin,

I hope that the nurse may be able to put your mind to rest. I'm glad to hear that deciding to phone has already made you feel a little better. 

I'm sorry to hear about the poor sleeping and flushes. This sounds like the side-effects of Letrozole. It took about 4 weeks before I began to feel the effects.

Regards,

Jolamine xx

I've been on the letrazole for about 4 weeks now. Did you find that the side effects improved over time? When I was first diagnosed I had to come off HRT, so GP gave me venlafaxine to help with the flushes. I could up the dose if necessary, but wonder if things might settle down over time. Xx

Hi Pippin,

Many people find that the side-effects do settle with time, but sadly, this didn't happen in my case. I take Venlafaxine too and started taking this the year before I started Letrozole. At the time, I was taking Tamoxifen and I found that this really affected my emotions, whereas Letrozole caused me a lot of pain in my joints. Most of the hormone therapies have similar side-effects.

I hope that you are one of the lucky ones and that you'll find the side-effects begin to settle given time.

Regards,

Jolamine xx

Hi Ladies,

Sorry for radio silence again!..I am still here and still reading all your messages.

 Pippin24 Good luck with you radio today...not that you'll need it. Honestly i think it will be a walk in the park for you. Do take rest if and when you need...for me though radio was the easiest part by a mile and actually didn't have any side effects...so i really hope this is the case with you. Keeping eveything crossed for you. I can't remember how many sessions you're having?

So happy to hear that you're not hosting Christmas this year, that will be a lovely break for you and i hope you get to put your feet up and be spoilt a little! Glad to hear you scar is healing too - hopefully you can get out for your walks soon.

Sorry you're feeling a little anxious at the moment though,i think that's totally normal and i can HARD relate! I'm finding this part so tricky to deal with, all the homones etc affecting sleep too but also my moods, feeling pretty low and teary at the moment which is not me at all. It's scary...but i'm hoping my body will adjust to the drugs in time (my oncologist said 6-9 months!!!!!) but as long as i know they will, that is helping. I am feeling a little better this week...just so teary and i'm starting to bore myself!!..let alone my friends!!!!! But i'll get there i'm sure...think it's processing everything that's happened in the past year, looking at what the future looks like, worry of recurrence and then also dealing with my hormones being plumemted into menopause....oh and my husbands redundancy!...i've also got two poorly kids who were sent home from school!!....just cold/temp etc so hoping they'll be back in soon but it's just a lot...espeically this time of year...still need to finish off the xmas shopping!.....BUT one day at a time!!!

 Jolamine  How are you doing at the moment? I know your tilt test isn't too far away...how are you feeling otherwise? Have you manged to get all your shopping done?

ROBIN71  How are you? Hows the chemo going? Hope you're hanging on in there!

NGS  ANy newsx your end?

So sorry for sporadic responses i am still here!!!!

Good luck today Pippin - you got this!!

Take care ladies! xx

Hi Greeny80, I am having 15 sessions of radiotherapy and can now tick off number one. It all went smoothly, just the 3 hour round trip a bit of a pain. 

Sorry to hear that you are also struggling a bit at the moment, with sleep and feeling emotional. As you say the change in hormones can have a big effect. Also you are right about trying to process everything over the past few months. I seemed so positive while going through chemo and surgery. Now I'm told cancer has gone, I seem anxious and worried, seems so strange. 

I'm sorry you have the added stress of your husband's redundancy and 2 poorly children. I hope they both feel better soon. 

I hope you start to feel better soon, just know you're not on your own. Always here for a chat, if you're feeling down. Xx

Hi Jolamine, it's such a shame that your side effects didn't settle over time, will have to see how it goes for me. If you don't mind me asking, what dose of venlafaxine do you take? When I came off HRT they said I could take 37.5mg for 2 weeks then up it to 75mg after that. At the time I chose to stay on the 37.5mg, as I new I would be going on hormone blockers, so would then have the option to up the dose at that time. I've certainly had an increase in hot flushes since starting the letrazole, which affects my sleep. Can't decide whether to increase the dosage or not. I have left a message for the breast care nurse to phone me today, feel a chat would be good for me. Realised I had a couple of things on my mind. I'm sure I'll feel better after discussing with someone. Xx

Hi Jolamine, it's such a shame that your side effects didn't settle over time, will have to see how it goes for me. If you don't mind me asking, what dose of venlafaxine do you take? When I came off HRT they said I could take 37.5mg for 2 weeks then up it to 75mg after that. At the time I chose to stay on the 37.5mg, as I new I would be going on hormone blockers, so would then have the option to up the dose at that time. I've certainly had an increase in hot flushes since starting the letrazole, which affects my sleep. Can't decide whether to increase the dosage or not. I have left a message for the breast care nurse to phone me today, feel a chat would be good for me. Realised I had a couple of things on my mind. I'm sure I'll feel better after discussing with someone. Xx

Hi Pippin,

I take 150MG of Venlafaxine, but I understand that dosage can be up to 375MG in severe cases. I am glad to hear that you have left a message with the nurse and hope that she got back to you today. How did your first radiotherapy session go?

Jolamine xx

Hi Jolamine, only just saw your reply, didn't seem to get a notification. I did speak to the breast care nurse, who was lovely. She said to ask tomorrow when I go for wound check in plastics department, to get a dr to check it for me as it's a reconstruction. She said if I can't get it checked there, they'll fit me into breast clinic for a follow up. She did also reassure me it's unlikely to be anything to worry about. With regards to venlafaxine, I have talked to receptionist at Dr's, who said someone will give me a call. I'm only on 37.5mg at the moment and want to increase it to 75mg, so hopefully they'll agree to that. Thanks for sharing your dosage, makes me think I won't have a problem. Radiotherapy therapy going well, just the journey is a bit of a pain, 3 1/2 hour round trip today, for a 15 minute appointment. Tomorrow I have to go for another wound check at a different hospital in the afternoon, so a tiring day. Hope you are feeling OK, your tilt test must be coming up soon isn't it?  Xx

Hi Pippin,

3½ Hours is a long journey for a 15 minute appointment, but I'm glad to hear that radiotherapy is going well. It's good that the nurse got back to you today. I hope that someone in plastics will check you over tomorrow and that all will be ok. As far as I know, it is normal to start on 37.5MG of Letrozole and to go on to 75MG after 2 weeks, so you should be fine.

My tilt test is on 18th December, so not much longer to wait.

Jolamine xx

It's actually the venlafaxine that I want to increase, I think letrazole is only 2.5mg, so many meds it gets confusing lol! I am going to message macmillan nurse in the morning, to check that oncology are OK with t. At least when gp contacts ne I can say I've already checked with hospital. 

Not too long to wait for your tilt test, hopefully they won't keep you waiting too long for the results. I saw on your post to Greeny80 that your husband has also had a biopsy. Six weeks seems a long time to have to wait for results. I think the waiting is the worst bit to be honest. 

Hi Pippin,

Sorry, my head is in the clouds tonight - I meant Venlafaxine. Hubby was diagnosed with Bowen's Disease, on top of everything else, when he had a squamous Cell Carcinoma removed from his back, 5 months ago. He had a number of lesions frozen off his head a couple of weeks ago and had a biopsy, on what plastics believe to be another Squamous Cell Carcinoma in his cheek, on Monday. It usually takes about 6 weeks for skin biopsies, but it is a long time to wait.

Jolamine xx

Hi Guys,

Gosh Pippin, 3 1/2 hour round trip is a lot!...thank god it's only 3 weeks so there is an end. Hope you're doing ok so far this week and that you can have a break this weekend from the travel at least. Hope you can get the right doses etc of your drug and peace of mind

Jolamine - so sorry to hear about your husband...6 weeks does seem like a long wait, hopefully christmas and festivities can distract you a little bit. Keeping everything crossed for a positive outcome...and glad your tilt test is coming up, thats good news.

All ok over here - i can feel things levelling out a little bit, still up and down but not feeling as teary/emotional as i have been - so hoping im on the right track..hoping christmas will be a good distraction too!!...and not sure what next year will hold but i'm definitely hoping that 2025 will be a slightly happier and healthier year! It's been a lot this year on so many levels so will be glad to see the back of it!

Kids have got one more week of school and then they break up for christmas - nearly done with the christmas shopping, just need to wrap so kids don't see anything!! Also need to do teacher gifts as well - i have put myself up for class rep this year for some reason!!!!

Anyway just wanted to check in - have a lovely, lovely weekend xx

Hi Jolamine,  so sorry to hear thst your husband has also been going through so much. It must be difficult when you both have appointments and worries.

I've had a bit of a day today and quite frustrated. Messaged macmillan nurse at the chemo unit to ask about increasing my venlafaxine. She replied that it was reasonable as it's still a low dose. Phoned and spoke to receptionist at gp surgery, as I hadn't had a call from gp. She said gp now wants me to have a phone call with pharmacist from the surgery, who's only in on a Tuesday. I explained that macmillan nurse said I was OK to up my dose. Apparently this wasn't good enough, so I asked for afternoon appointment on Tuesday due to radiotherapy. She is only on in the morning, so need to try and get back for 12 o'clock. I asked Macmillan nurse if they could email something over, she said wait and see what they say first. I told them I have some of the higher dose that I was given before, which I going to start asking while I wait.I was getting so frustrated. 

I went fir my wound check this afternoon and mentioned the breast lump, which they could feel. They said I would need to see the plastic surgeon and they asked if I'd received a 6 week post op appointment. I said I hadn't, so they checked, but nothing in the system. Went to desk to get appointment,  none avaliable until end of January, which will make it 3 months. Got back in touch with BCN who emailed plastic surgeon, who is going to arrange a scan for me. 

All that and a 3 hour round trip to radiotherapy has left me feeling knackered and anxious. Plus have irritating rash between my boobs from the radiotherapy. Sorry for the rant, but feel better now I've let it all out. Hope you have a lovely weekend. Xx

Hi Greeny80, glad to hear you are feeling a little better, I really think maybe it's just hit us about all we have been through. I have been feeling the same at the moment, yet felt so positive going through chemo and surgery. As you say Christmas will be a distraction and hopefully we'll feel better then. I bet your kids are getting excited about Christmas, I'm really looking forward to spending Christmas with the grandchildren. Well done for putting yourself up for clas rep, it's really good of you considering all you've been going through. 

I've had a rubbish day, which I've explained in my post to Jolamine. Won't put it all up again, but you can read on that post if you want. I've ended the day feeling exhausted and really anxious. I've decided I can't wait any longer to get back to my walking. Going to start again tomorrow and see how it goes with the wound. I need the walking to help with my mindset and know this will get me back on track. Hope you have a lovely weekend. Xx 

Hey Pippin,

How are you doing? How's it going on radio? Hope you're ok.

Have you managed to get out for some walks? I really hope so...Did you speak to the pharmacist? And any joy in getting a scan date? Really hope your'e starrting to get some answers.

I'm doing ok. Feeling a little more level with regards the hormones but definitely not where I was...like you was so positive during all the big stuff, surgery, chemo, radio etc but just finding this bit hard for some reason..but i am feeling a little better...other than side affects from the abemaciclib which is giving me a dodgy tummy and feeling a little nauseaous at times??...it was worse over the weekend, oncologist thinks that's  becuase i had my zoaldex injection last thursday and the concoction of the jab and the abemaciclib just unsettled my stomach?..if feels a little better today so hopefully i'll be good now for a bit...until my next jab next month!!!

Anyway we are off to Canada for xmas so i just need to concentrate on that and make sure the kids have a lovely fun festive time even if i'm not quite feeling it myself his year!! Feel like a right old bah humbug!!!!!...but maybe a change of scene will be what's needed.

Husband still looking for a job.He's currently on gardening leave but we've been told the company might be going into administration so we may not get paid..which is a worry...not sure what else this year wants to throw at us but this year really can do one!!!!...really hoping for healthier and happier 2025!...to you and your families too! 

Sorry for slight rant but always feels better once you've aired it!

Hope you're doing ok and not surffering too much with your radio.....are you nearly half way now?

xx

Hi Greeny, radiotherapy is going well, I tend to get to the hospreally early, regardless of appointment times as travelling is easier. I told them I don't mind sitting an reading for an hour, but always get called in really quickly. My daughter took me today and we were home by 9.30am, after 3 hour round trip. We had a good old chat about spending Christmas together, so feel quite uplifted. I did get an irritating rash between my boobs in the first few days, but changed creams and it seems a bit better. I finish on Christmas Eve.

Finally sorted my meds after talking to pharmacist, who then needed to talk to Dr. Not sure why I couldn't just talk to the Dr last week  but at least it's sorted. 

No news on breast scan, but not too worried as BCN did give me some reassurance. She said it's very unlikely to be anything to worry about, as it's a reconstruction and all breast tissue was removed. 

I do need to contact oncology  as they mentioned at my appointment on 7th Nov that I needed to have a bone scan. I've heard nothing since, but get fed up having to keep phoning up about stuff.

How amazing that you're going Canada for Christmas, I sure this will give you a boost. The change of scenery will certainly do you the world of good. 

It's such a shame having your husband's job situation hanging over you. Especially when you're not sure whether he'll  even get paid for his current work. You really don't need this on top of everything else you had to go through this year. Fingers crossed, there's a new job on the horizon. 

I will also be glad to get this year over with and look forward to a better year next year.

Wishing you and your family a very Happy Christmas and  happier and healthier New Year to you too xx