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 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 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 Greeny,

I am so sorry that you are having bother with your emotions and night sweats, on top of everything else. Unfortunately, this is not uncommon, but you will soon be back to your normal positive self. What a pity that you have two poorly children at home - hopefully, they'll soon be hale and hearty again. Hubby had a biopsy of his cheek on Monday, so we have an anxious 6 weeks of waiting for results, for a suspected Squamous Cell Carcinoma.

I am just keen to get my tilt test out of the way and then to hopefully get some answers. Yes, I've got my Christmas shopping finished, but still have the wrapping to do. I'll need to post many of them this year, as we moved down south from Scotland earlier in the year - another additional expense! I hope that you manage to finish yours soon.

Kind regards,

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 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 Pippin,

Sorry, I seem to have missed your post for some reason. I hope that your weekend improved after you wrote this. It certainly sounds like a very frustrating day. After reading the rest of this thread and your replies to Greeny, it sounds as if you've managed to find a way around things, with the help of your breast care nurse. It is reassuring that she doesn't think that there will be anything amiss with your breast, but I'm glad to hear that a scan is being arranged nonetheless. 

I'm glad to hear that the new cream is helping with your rash and that you've finally got your new dose of Venlafaxine sorted - here's hoping that you'll feel better with this! Have you managed to get out for a walk yet? This will probably make the biggest difference to your emotions, when you do. You must be beginning to feel shattered with all the travelling to radiotherapy. Still, I'm glad to hear that it's going ok. I wonder if your care team are waiting until after your radiotherapy finishes before you have your bone scan?

I am looking forward to spending Christmas with my grandchildren too.

Jolamine xx

Hi Jolamine, I sometimes miss posts too, notifications don't always seem to show. I'm feeling much better now thanks and radiothrrapy going well. I phoned the chemo unit today to enquire about the bone scan, but apparently no request for bone scan showing, so obviously been forgotten. They've scheduled a phone call with oncology for 23rd December, so I can discuss it. Happy with that, as I didn't want to have to try and fit it in while on radiotherapy.

Hope your husband is doing ok, I know how difficult it is waiting for results. Good luck with your tilt test on the 18th, let me how it goes. Wishing you and your family a very Happy Christmas. Xx

Hi Pippin,

Hubby has a host of medical problems - Quadruple by-pass 30 years ago, strokes, TIAs, Parkinson's Disease, Diabetes, Bowen's Disease, Heart Failure, Squamous Cell Carcinoma and Vascular Dementia to name but a few. His Dementia is progressing faster than we anticipated and he doesn't seem too worried about the wait - I think that I'm more concerned than he is! He has also had problems with continuous infections for the past year and is due to have surgery to try and remedy this shortly.

I'm glad to hear that you have a scheduled phone call with oncology for 23rd December and I hope that you can get things sorted out then.

Regards,

Jolamine xx

Hi Jolamine, sorry to hear how many issues your husband is having to deal with, it must be so difficult for you both. I hope things improve in the coming year. Xx

Thanks Pippin.

Jolamine xx