Wow Spudgirl you really have gone through a tough time, I’m sure everyone would feel tired after that without everything that came before it! Take the time you need, rest and recuperate at your own pace as it will be better in the long run than pushing things too soon.
Fecinora, I have only had single mastectomy and therefore cannot give any advice or info on your questions. How about asking for a peer to peer 1:1 with someone on this site that has had a similar experience, there must be someone.
Good question around checking for lumps behind a reconstruction, I hadn’t considered that but assume someone will give advice at some stage. Its worth someone asking the question of their breast surgeon or cosmetic surgeon, I’ll add it to my list of questions but I’m not expecting to see either until Mar or April.
Hope everyone is doing okay, we have sunshine today so off for a walk along the seafront and hopefully some lunch…a ‘Victorian afternoon tea’ was suggested so I may be getting a bit spoilt today!
Well, had to give in today and went off to see my GP. Now have a sick note to work only 3 days per week for next 4 weeks and an appointment for a blood test. I have been so exhausted for the last 3 weeks, not able to do much except work and sleep (or at least try to!) and the lack of exercise and energy to cook and eat well is affecting my general mood too. Have a feeling of relief that I don’t have to try and keep it up, but yet to discuss with work…
Caz - I really hope that the work place try to understand. After what we have been through I don’t think work and sleep isn’t a good recipie for recovery. It sounds as though your GP understood though. Take it easy.
Spudgirl - It’s good to hear from you. I finished 3 weeks of rads on the 20th Dec too. I got the tiredness over Christmas but seems to be improving.
Fecinora - I had dinner today with a friend who had a hysterectomy as her scan found a syst on one of her ovaries at the same time they found her BC. It was her decision to have everything removed even though she dosn’t carry the BRCA gene you do. Everything went very straight forward for her and also had three ops in as many months.
Kate - Like you I have expander implant too. I will ask the same question on my next oncology visit on feb 11th unless you get to yours or BC nurse first.
Morning Angels not been on for a while, been working 3 days going ok so far, they are being gentle with me. Have found I remember what I need to do, but can’t remember where to find it on the computer systems, so many changes in 11 months too, hopefully get there eventually. Can any one remember Roz should know the name of the hotel we are staying in in Manchester wanted to check how far from city centre it is , again I could not remember. I have been looking at trains thinking of booking before they get more expensive. Is everyone still up for going? I’m looking forward to meeting all of you. Great news about Kate’s results. Hope all you other girls are getting there. Take care. Lynn x
I have not been on this site for sometime. I am feeling very tired on this Anastrozole, does anyone feel the same? I feel dizzy and keep forgetting everything ! I feel very down at the moment. Pleased you are still there.
Louis. xx
Nice to hear from you Louis sorry you are feeling down. Have you tried a different brand if letrozole I am not on it, I am on tamoxifen, but I have researched it a bit as my mum is on it and it in conjunction with other medication made her very sick, everyone on here seems to recommend fermara, aparantly it is more expensive so you need to insist on it, worth a try.
Roz thanks for the info I have checked it out hotel only about half a mile from picadilly. I am thinking of booking my train now, hope everyone does not pull out at the last minute. Lynn x
Lynn & Diggy - Oh and I are looking to stay over on the Sat night and meet you all for the meal too. Can’t wait we’ll be there.
Louis - I just started Herceptin IV again and have a cycle every three weeks until August. I’m also on Tamoxifen for 5 years. For me too It does seem relentless and tiring. I’ve usually fallen asleep on the sofa by 9pm.
As you can see i have posted my new pickie. Absolutely hate my hair at the moment. It’s all over the place when I wake up. It looked a whole lot better either a shaved no 2 or pixie but I know I can’t do anything about it until its grown. Seems to be taking forever though. Also I’m now growing two new nails (one on top of the other) on each of my big toes. They can be painful too. What’s that all about? I see two oncologists next week (mine and her boss) and I have so many questions. When do I get my first scan? How can you tell if cancer has returned behind the implant? etc
On the positive side, took my horse for a ride yesterday. She was amazing and I loved it, but didn’t go far as my muscles have gone and they will need to improve, it also started to chuck it down. Have an achey back today too. Ah well small price to pay eh. Hope your all good. Sandy. xxx
Thank for getting back to me, I have not booked yet, I managed to find return train fares for £52 two singles from Glasgow Central to Manchester picadilly on trainline.com I have got the Friday off and was planning to leave here about lunch time and leave manchester about 1 ish on the Sunday. I ruled out the flight because there was only one flight home at 8.50 on the Sunday night too late for me. I think that was fly be. Train is about 3 hours good book I think unless you want to meet up and travel together. Let me know . Lynn x
haven’t been on for a while. have just been struggling through and trying to get on top of health stuff.I can’t take in all the news but congrats if you’ve had a clear mammogram, picc line out or have gone back to work. I’ve just been signed off for another 3 months as I’m struggling. Feeling less depressed and anxious though so that’s good! Keep trying to take things on to help myself like exercise and diet but can’t really maintain anything at the moment. having probs with sickness/indigestion, hot flushes, weeing all the time, not sleeping and fatigue. I’m putting it all down to tamoxifen and am seriously thinking of stopping taking it when I’ve seen onc in Feb- If only to find out if it’s responsible for all these things!
I’m planning to come to manchester. I’ve trawled through but can’t find the date we’re going- pretty sure it’s the 4th April but don’t want to book train until someone else has reassured me! no confidence in memory lol.
I saw plastic surgeon last week who was great. He doesn’t think fat transfer will do it for me sadly so it looks like surgery if I go ahead. He suggested breast reduction to remove scar tissue( which has tethered). This means surgery to good breast too- not sure what I think about that yet, or use tissue from stomach or back like you mx ladies are having to reconsruct affected breast to match the other one. Is anyone else having reduction to the good side? I can’t do anything until 12 mnths after rads which is october for me so i have lots of time to think.
Mel it’s 4th and 5th April when we meet up. I’m glad you are feeling less anxious and depressed. I’m also glad you’ve been signed off for longer. You are best not to return to school until you are feeling properly well.
My hand has been swollen and sore now for a week with no sign of let up. How long do you reckon I should wait before going to the breast care nurse. I’d rather avoid more hospital visits if I can! Do you think a compression glove might help?
Oh Mel i’m with diggy on ringing your BC nurse just to make sure all is well sweetie. Hope your sorted asap. xxx.
Fecinora - It will be my first question for both as I see the top oncologist on Friday and my oncologist on the Feb 11th so it will be interesting if they both have the same opinion. Ive had my date through of March 7th for my first mamogram since dx too. I don’t blame you for exploring every option for Mx and recon. I did the same (just the right side) and am happy with the implant and the way it looks. It seems like ages ago now and I don’t really have any problems. Best wishes with your decision and I’m sure whatever choices you make will be the right ones for you. I’ll post there opinions as soon as I get back from each appoinment. Take it easy. xxx
Mel - Great to hear your feeling a little better and good to know that all the hard work your putting in to get well is paying off. Another three months off work won’t hurt in the least. Still very early days for you if I remember.
Diggy - Soooooo well jel you have the herceptin injections. I have another half day at the hospital on Tues for bloods and then herceptin iv. Hate it with a passion but im so glad for you. Another question for my oncologists is when can I get them too.
How long for bad nails? and why does my back ache all the time? (Sometimes i can’t get up off the sofa). Oh woe is me again. LOl.
Hope everyone else is coping ok. Lv and Hugs to all our lovely angels. xxxx
Hi everyone. Thanks for your messages. My hand seems to be going down a bit so I’ll wait another couple of days I think to see it sorts itself out (wimp aren’t I?) Last time my wrist swelled up when on chemo the bcn said I would have to have an ultrasound scan to check for lymphodemia. I really am sick of hospitals now. I really feel for those of you who are still having to go for infusions.
I hope your back feels better today Sandy.
On a brighter note I’ve done a full days work today and took the dog to a new training school tonight. Woohoo - could a life be creeping back?
Fencinora - Here’s what the first oncologist i saw yesterday said regarding my Mx and expander implant and finding any future cancer without having a mamorgram on that side.
I asked her “How can we tell the cancer hasn’t returned anywhere on that side without a mamorgram or scan”? Her answer was " your implant is behind the muscle wall where there is no breast tissue. The only breast tissue left is that of the skin sparing part that has been used to help with reconstruction and therefore any turmors will be felt very close to the surface or the scar tissue either on the breast itself or within the node/underarm scar. In either case any changes will be very easy to detect by feel or visually.
That’s all I can tell you for now. The oncologist I saw is the top for my area trust. I see my own oncologist on Tuesday so will let you know what she says as soon as I get back.
My infusion on Tuesday was awful. Pathology couldn’t get any blood and sent me to the chemo unit. The result came back that I was neutropenic again but I pushed for the Herceptin as another loading dose means another whole day in hospital if there were any delay. The oncologist is saying I may have to have a picc line put in. Ah well onwards and upwards I suppose.
Lori & Philomena - Its great to hear from you. 8 weeks till we all meet up. Spring is in the air. yaaay. xxxxx
Fecinora - My oncologist said the same in a round a bout way, she also said that blood tests can show hightened levels of something (can’t remember what) in the blood which can help reveal anything sinister. I can also ask for a scan if I feel any changes at all. I really wish you all the best in your decisions and future ops sweetie. It sounds like your researching all options so whatever choices you make I’m sure they will be the right ones for you. xxxxxxx
Hope none of you are flooded. Spring must be around the corner soon. Have my mamorgram on March 7th. Can’t wait to get this first check over and done with. Very nervous. The oncologist has said that the Herceptin injections may soon be available in our area so i’m going to hold off the option of Picc line for now. The chemo unit are going to continue to get blood, and then push herceptin through the same IV after a flush which should help my one remaining good vein to recover.
Angie you’re definitely not alone in the tiredness department- I haven’t even gone back to work and I’m knackered all the time. I think i’m slowly improving but it is really frustratingly slow. I don’t feel depressed now ( anti depressants are great!) and I’ve stopped waking up every morning feeling anxious and panicky. I do feel sick every morning though which is apparently a tamoxifen se- it’s like being pregnant! and still struggling with indigestion and pain on op side. Seeing physio for this next week, the plan is deep tissue massage and exercises. back to onc on wednesday for 3 month check up. don’t know when i get a mammogram oh and there’s the hot flushes of course…
feel free to moan angie if you can’t do it here then where? can you reduce your hours for a bit? sorry to hear about your blood sugar and pressure. hope it’s under control soon- I’m not suprised you’re fed up.
my wedding ring got too tight during chemo and I got it off by running my hand under very cold water and then using soap. i haven’t been able to wear it since- I don’t think my fingers are swollen, just fat!
my hair is growing at random angles some up and some down, some just straight out from my head! lol
Judy, when you had your ct scan did you have to have an injection to help show anything up? I want to ask for a scan to see if my stomach ache which goes through to backache is anything to be worried about. I’m wondering how they will inject with no veins.
Mel, Im hoping it’s just tamoxifen side effect as I too feel sick in the mornings and it wakes me up.
Amber, sorry you can’t make it to Manchester. Maybe we could skype you if one of us takes a tablet?
Caz, your hair looks great. The muddy boot image made me laugh. Haven’t done that in a while.
Angie, I’m glad your blood test came back good. One less thing to worry about.
I just can’t seem to shake this doom and gloom feeling. I think it’s because of the backache and niggly tummy. I’m back on Lansaprozole as the oncologist thinks it may be down to acid again. I’m thinking all sorts of things. I think i will call the oncologist again today. Must be fed up with me by now.
On a lighter note, I went to the hospital hairdesser who tidied and washed my (quiet thin hair) with NIoxin shampoo and conditioner and hair repair treatment. Bought some too. I really do have much thicker hair now but like the rest of us it just wants to stick up and out as it gets longer.
Judy I’m so glad your scan was clear. What a relief!
Angie I was told to speak to bcn if I had more concerns, rather than going back to GP. If you are concerned that it feels different to normal it is worth mentioning it to her to be on the safe side. I’m glad your blood tests came back ok.
Amber it’s a shame you can’t make it to Manchester but I’m sure this will be the first of many meet ups.
My energy is returning -thankfully, though I’ve struggled a bit this week with clearing out and decorating our playroom to turn it into a bedroom for Jamie. Back to having an hours nap in the afternoon. Work is going well, though we are having an ofsted inspection in March, so the pressure is on a bit as I will get a bit of a grilling as SENCo. Good timing considering I’ve just had 9 months off I’ve started back at dog training classes too as I’m determined not to let work take everything at the expense of me having a life.
Sandy let’s hope the herceptin injections are available soon.
Mel I’m glad you’re feeling less depressed. Let’s hope your energy comes back soon.
Sorry if I’ve missed anyone. Take care everyone xx
That’s fantastic news Judy, hope you have had a few drinks in celebration!
My week has been a busy one at work but its now a rest day followed by the weekend so I’m tired but happy tonight.
Carol - the lady who is about a year ahead of me at work has been told to take vitamin D by her GP as she was feeling tired constantly so maybe its a good one to start boosting!
Angie - please call your BCN again and get to see someone soon, its the only way to put your mind at ease.
I’ve started back at dog training classes too as I’m determined not to let work take everything at the expense of me having a life.