Hi Everyone, i started on 25micrograms of clonidine twice a day on thursday, and got some sleeping tablets off the doc as well, i have to say that i feel totally relaxed and have only had a few hot flushes during the day and only woken once during the last two nights with a hot sweat and have gone straight back to sleep, i am on arimidex and have recently had the total hysterectomy with bilateral oopherectomy, this is the first time since being diagnosed since June that i have had such a good sleep.
Alisonxxx
Hi Alison
Nice to hear from you again, i am so glad the clonidine is starting to work for you, it took a while with me, remember i had to up my dose to three 3 x daily but my GP said i could quite easily and some ladies are on up to 18 a day! If this effect starts to wear off after a few months go back to GP and ask to increase the dose don’t think it is not working. I may up mine when i go to Spain in June as i am sure to roast and do not want a repeat of my Lanzarote holiday where i sweat-ed morning noon and night and ruined my holiday.
I am off for a private referral to a gyny on Thursday as i have had another bout of bleeding again which is just like a period, last time my GP thought it might be the tail end of the menopause or my womb finally shedding its lining, this time though they are taking no chances so to put my mind at ease I am seeing someone about it for a few tests. Just hope that my ovaries are not starting t o work again after 8 months, shouldn’t do though as i am 54! The thing that would worry me is not being post menopausal and the Arimidex not working. I seem to lurch from one worry to another, my BC nurse again mentioned that if i was on Tamoxifen it might be womb cancer! I just love that woman she seems intent on feeding my paranoia!
Hope you continue to sleep at night and the flushes really do stop for you as i know like me you have really suffered.
Best wishes
Suzzanne
hi Suzzane, if its any consilation i find my bc nurse total rubbish!!! why are you having to go private? i insisted on ovary removal and the gyni was so nice that he took the whole lot out! and i got a lovely letter yesterday to tell me my pathology was fine, i thought that was lovely of him, i hadn’t even given it a thought! you need to get sorted out, have you spoken to your onc about this? ps, i sent you a private message, not sure if you ever look on that. the clonidine is great, why they couldn’t have given me it in the first place i don’t know, i am sure they like you to suffer a lot!! found out that i should have had a bone density scan before starting on arimidex due to the high amount of arthritis in my family, the surgeon could not believe i had not had it done, especially as i have suffered from pain in both knees, my left shoulder and right hip, anyway, my old onc has gone and i will have the scan in a few weeks time, also i got some Adcal off my sister who does not like it but who does not pay for prescriptions, apparently i should have been prescribed that at the same time as arimidex. i feel like the world has gone mad!!!
lots of love
Alisonxxxxxxxxxx
Hi Alison,
No sorry i never got your private message as i would certainly have replied to it. I actually do not have a team, as i did not have chemo or rads i was sent home after my surgery and just told to come back in 4 weeks! i have posted many times that i developed Septicemia and had to go back into hospital 3 weeks later only hours from death! If it had not been for my wonderful GP surgery i would not be here writing this today, they literally saved my life by telling me to get myself up to the hospital and getting admitted myself, my breast unit were not in the slightest bit interested in me! Hence i am transferring to another hospital after my next check up.
A lady came into my shop last Sunday and was talking about the hospital i want to transfer to. She had 2 benign lumps and straight aways was given a team to look after her, a breast nurse, 24 hour helpline, district nurse, councillor the works! I had nothing, my husband was my district nurse, my GP surgery did not even know i had cancer, my husband went in and saw them and they organised everything for me, my district nurse and a referral a macmillan nurse to talk to but the breast unit would not allow it, they put a stop to everything that my surgery tried to do for me. They obviously did not want me talking to anyone!!!
I am going private because the wait for an urgent referral is 6 to 8 weeks and as my daughter says my frame of mind when it comes to anything to do with my local hospital is not good, she knows in the 8 weeks i would have worked myself into a right state worrying that it was something really sinister as well!
I did have a bone density scan but after i was started on the Arimidex, it came back ok, nobody has prescribed me anything to go with it but i take calcium and glucosamine to try and help the old bones.
I have thought about ovary removal but i am such a wimp, was it a really big surgery, could you please tell me a bit about it. I guess that way i would have the reassurance that the Arimidex would work while at the moment with this bleeding i am having again i am terrified i am not post menopausal.
All the best to you Alison
Suzzanne
Hi Suzzanne, i asked for my ovaries to be removed, and was so lucky to get the whole lot out, its such a standard operation that i had no worries about any problems with it, its knocked me for six a bit but i am hoping now that i will be fine, i do think that some oncologists tend to favour their patients who are having chemo and rads, my onc did not want to know me, yet he was completely different with my friend who had to have chemo and rads, can’t your doctor do a blood test to see how menopausal you are? they would not normally give you arimidex unless your post, so i really think you need to get sorted out as soon as possible, its not right the way we are treated at times, i have been left feeling totally paranoid due to the way my onc has been about me, thank god he has retired!!!
Hi Alison
Just posted on your private message, I found it, silly me still not used to private messages. I did have a FSH test in October after i asked for one, that came back that i was definitely post menopausal but that was after taking the Arimidex for 3 months and i was worried that Arimidex could give a false reading. Now that the Arimidex is settling down and the side effects are now subsiding i would be horrified to start a whole new treatment and go through what i did before. I shall ask the gyny on Thursday what he thinks. I am hoping it is the final bit of the menopause as Jan was the first bleed since i finished my HRT last May.
I also need to get this bladder infection under control, i just knew when the GP registrar had problems doing a smear (It was like being in labour) that i would not escape some problems. I naturally started to think Cervical Cancer, then remembered the breast nurse mentioning womb cancer, by Friday night i had both in my head and never slept a wink! That is why my daughter is paying for a private consultation, i would have driven HER into psychiatric care let alone myself if i had had to wait 6 to 8 weeks.
I never had an onc, nobody just hubby and me till the surgery got involved. I feel i was just hung out to dry. I just hope that going to a different centre will be better for me, I would be near my son and his wife who are desperate for me to transfer there and my daughter also feels the same.
I am a bit down at the moment anyway due to my brother in law, i have posted on various sites about him, he is in Birmingham hospital Monday to Friday having chemo and rads together as a last ditch attempt to treat his mouth cancer, he has had all the surgery they can offer and if this does not work then i don’t know what we can do, i feel very weepy at the moment when i think what the poor man is going through. He was first diagnosed 16 years ago and made a full recovery but it came back April last year, he had more surgery which seemed to work then in October he found a lump in his neck and it was back and spread to his neck so he had all his lymph nodes removed from there. Amazingly he is still very positive, does not want to know anything about his treatment or prognosis as that is his way of coping, they have not read or researched anything preferring to leave things in the capable hands of Andrew Brown the consultant. I get so angry with myself for my little trivial niggles when i know what he is going through.
Hey, don’t you dare beat yourself with a stick, one thing i have found in this new life i have is that trivial can sometimes be mountainous, your going through a lot don’t forget that for one minute, your entitled to blow when you need to xxxxxxxxxxxxxxxxxxx
i’m not too far from you Suzzane, i live in Buxton in Derbyshire, i am 45, married to a wonderful man too, got a 25 year old son, a 17 year old son and a 16 year old daughter, i have a good family, shame about the outlaws but they do help a lot especially with the garden, my parents died years ago, but i have just got back with my sisters after 12 years, one of them had bc twice bless her, but she is 4 years down the line from the last one and still going strong, so thats a bit of a worry and an inspiration to me if you know what i mean xxxxxxxxxxxxxxxxxxxxxxxxxx
love
Alisonxxxxxxxxxxxx
Hi Alison
Derbshire is beautiful, i once went to visit with a friend who had family there and i really enjoyed my day out.
So you have a sister with BC and i have a sister in law aso recovering. I know exactly what you mean about it both being a worry and an inspiration. I feel that my brother in law is an inspiration witha all her is goiing through but at the same time i am terrified for him.
Woke this morning waiting for the bladder pain and thankfully it has almost gone so the antibiotics are working a treat until Thursday when the gyny will most probably fiddle about up there and set something else off! I have b een out today with my friend to lunch and then my daughter is taking me out for the day tomorrow, anything to keep my mind from going into overdrive about thursday.
Anyway take care,
Suzzanne