Yeah, Jak, its def for ever,…sorry for butting in. Have lymphoedema anyway. But not from tests,…from infected implant many years agoxx
I had my follow up appointment with my BCN today, she sent out a " holistic needs assessment" questionnaire, which is basically a list of questions about how you feel about different aspects, health, relationships, side effects etc. It was a useful tool to discuss things, though I sort of surprised myself in that everything was fine. When you give something a score out of ten, it helps to get things in proportion.
She also checked whether I was happy going onto the open access pathway, which means in future I’ll get an annual mammogram but no routine clinical appointments unless I have a problem I want to refer. She said if I opted for the clinical appointment they would do a breast examination, but it’s vanishingly unlikely to find anything if you’ve just had the all clear from the mammogram. So really there didn’t seem any point.
So on Friday I see the oncologist which I think is the post rads check up, and after that it’s just the annual mammogram which is probably in June. But I also have a referral to the surgeon in June to discuss the next (last!) operation.
Jak, I’ll be interested to know how you find the hypnotherapy, it’s a fascinating therapy, and I really hope it helps.
My BCN gave me a leaflet for the Haven, but the nearest one is in Hampshire, which is too far to travel for anything regular, she was suggesting my sister and I went for a day trip. But that’s even further for my sister, so I don’t see it happening. I do envy those of you who live in places where these services are available, I would have liked to do the Moving Forward course.
But I did see the counsellor, which was useful, so I should be grateful for what I did get. I had three sessions and decided I didn’t need any more, but I can refer myself back at any time.
Well, I’m still sleeping for England, I woke up this morning and had a coffee with my husband at 6.45, then promptly went back to sleep and woke again at almost nine. I’m so glad I don’t have a job that I have to get up for.
Hi Everyone!
I’ve just had a lovely catch up on this thread and the original winter warmers one. It’s good to know you are all still there and doing ok. We have been away from home for over 3 weeks now and that is usually my limit before homesickness sets in, even tho we are having a fab holiday. What a wimp I am!
NZ hasn’t disappointed at all it’s beautiful, tonight we are in Tu Anu, and are off to Milford Sound tomorrow, allegedly it’s a bit like the fjords. I’ll let you know.
BC wise I don’t think I quite have the energy and resiliance I had before RT. I seem to need lots of sleep to keep up this pace. But then the OH seems to be finding it fairly demanding too.
Lots of love, Gillx
Dizzy, I know just what you mean about cutting down the wine intake. These NZ sauvignon blancs are awesome, and only 7 a bottle. Will power, ah well.
Hi Gillie!
Can’t believe it’s been 3 weeks! I hope you continue to enjoy yourself and will look forward to the photos!! x Jak
Hi Gillie, lovely to hear from you. Noooo we’re not at all jealous you’re having a lovely summer holiday in beautiful New Zealand, while we shiver in the gloom here!
In fairness today was quite a nice day, and it is staying light so much later now, definitely it is almost spring. Gillie, I’ve never been away for more than two weeks, but I’m generally glad to be going home then. You’ll want to see how your woodland is getting on.
Hi Moijan,
That sounds horrific - do you think things have moved on since then in terms of advice? Also were there as many ladies writing blogs? I’ve learnt a lot from my own research but even more from other ladies’ experiences on here.
I feel very lucky to have had my cancer removed before it reached the lymph nodes.
Keep promoting breast screening ladies!!
x Jak
Hi Guys,
I’m back!!! And have really enjoyed catching up with your posts, glad to see you are all still about on here.
I’ve had a fab time, but am struggling with jet-lag just now. It’s the double hop travelling that does it. Tuesday lunchtime Australia, Weds back in Norfolk and feeling like death warmed-up. Generally tho feeling ok. I think I managed whole days while I was away not fretting about thè BC.
Are any of you now doing your own breast checks again? My BCN told me it was time to start again when I got back, that they had done their bit and this bit was up to me. But how often? What am I looking for? I didn’t find my BC it was picked up on routine mamogram and they said it would have been ages before I would have found it myself.
I used to check myself once a month, but it was kind of stress free just something I did because I was supposed to… It just feels much more scary now.
Gillx
Also, I came back to find my follow up oncology appointment has been put back to May. It seems such a long time when I was flavour of the month at the Norfolk and Norwich before last Xmas.
Gill
Hi Gilieann at the moving on course they said resume checkingvyour breasts once a month. If you do it more regularly then they said you wont know what normal is. I think we will all be very sensitive to any changes anyway. Hope that helps xx
Hi Gillie, how nice to see you back! And this thread has come alive again.
I would never have found my cancer as it hadn’t formed a lump, it had straggled along the milk ducts. My breasts are lumpy at the best of times, and the operated one is even more so because they moved all the remaining tissue around to recreate the shape, so there are all sorts of odd areas which feel different, I think there’s quite a big cavity in there somewhere as well. So I’m relying on the mammogram on that side at least, and hoping that there won’t be anything to find…
I’ve spent most of this morning digging and weeding at the allotment, I’m definitely back to my normal energy levels now, and generally feeling well. It’s easy to have plenty of energy when you’re not struggling with work, I get so much time to sit down and recover.
Gillie, how is your woodland coming on?
Evening All,
I’ve been reading all the posts on here and on the original winter warmers thread, and it’s so good to hear how everyone is doing.
Ali49, thanks for your comments about breast checking, I’ve sort of come to the conclusion that I would do it once a month, otherwise there is always the possibility that I will drive myself crazy!
Helena, how lovely to have had such a positive experience with your oncologist today. It just builds such confidence and and makes it possible to truly go away and enjoy your life. It’s also nice for us to hear the good news repeated so that we can start to have a bit more confidence in your own good news. I know that Docs aren’t recruited because they are people people, but it does help when they are. My surgeon was great, my oncologist less so although I suppose he was pretty patient with me. So off you go girl, enjoy your life, when does the bowling season start? :smileyhappy:
Hey Jak! Sorry to hear you are still struggling with the fatigue, but glad to hear your Doctor is being supportive. I feel very fortunate not to have the additional stress of managing work and a period of sickleave as well as all the other issues involved with BC. It’s one less thing to worry about when you are awake in the wee small hours. Everyone is different aren’t they? And we have each bought our own baggage of existing health and emotions to the joy of having BC, lucky us. So life gets to be pretty messy sometimes and the body is one big holistic jumble of physical and emotional bits, so maybe your body is saying … not yet. You will get there in the end! I’m smiling ruefully as I type this, patience isn’t one of my virtues. :womanfrustrated:
I was talking to my local Big C Centre today trying to arrange some counciling sessions, I think it’s time. I was trying to explain that I feel like it’s time for me to deal with the emotional impact of the last 6 months, you don’t really have time to face it properly when you are going through diagnostics and radiotherapy. I feel like now I am in a place where I can safely face up to it but I think I need cognitive ammunition to help me pick myself up and move on properly. Could be messy tho, lots of tissues and runny mascara.
Sue, I was so glad to hear about your hair do. It just makes all the difference doesn’t it. And chilly ears are a small price to pay for glamour.
Dizzy, it sounds as if you are doing really well and getting ahead with the gardening too.
We may have been back a week, but I feel as if I only just arrived today! The jet-lag was awful, I would have wondered if it was a hangover from the RT, but my husband has been just as bad as me. Then we were off to see my Mum (who is having a bad week) and then at my daughters for the baby’s first birthday and some childminding. So back home now and I have finally retreived the chickens from their holiday at my friends. So my husband was at the allotment this afternoon and it’s not too bad apparently but the weeds are thinking about it… We haven’t been to the field yet but I’m hoping to get there either Friday or Sat to see the daffs and the snowdrops we planted, we also wanted to do a bit more coppicing before the end of the month. Pretty excited about it really, that should test my stamina! It’s an exciting year for us because we have a greenhouse for the first time, originally we agreed we would have half of the space each, but from the way the conversations have been going recently it sounds as if my husband has totally forgotten about that arrangement.
Jak, you asked about what was my favourite bit of New Zealand. I don’t think I could choose. The country and the scenery is all magnificent, it is really varied but nothing disappointed. The mountains were great, I’ve never seen so many waterfalls, all the coasts were stunning, the glaciers were… well big, and the rainforests were beautiful. Probably the most impressive thing was the huge rivers and river valleys were you can see how the water has shaped the landscape, awesome. We also went whale watching and saw nesting albatroses. The food was scrummy too, not posh but lots of meat and loads of chips, absolutely not nouveau cuisine. :womanvery-happy: So I probably shouldn’t blame my bit of gained weight on the tamoxifen! But I do.
Sorry this is such a long post, but I had lots of catching up to do.
Love, Gillx
Hi Guys,
Goodness it’s very quiet round here at the moment! Does this mean that the winter warmers are all out and about in this lovely springlike weather? I hope so, that would be great.
We’ve been down to our field over the last two days coppicing a tree for next years firewood. I didn’t do the really hard work just the light chopping and stacking but it was good exercise and I do seem to have worn myself out! The daffs and snowdrops on the field are lovely and it does make you feel more positive when the sun is shining. :smileyhappy:
Love to all,
Gillx
Hi,
Are there any of my winter warmer chums out there? How are you all getting on?
Gillx
Hi Guys,
Are any of my old winter warmer chums about? I’m having a bad / worrying week and I am not feeling strong.
I am awaiting a pelvic scan and a recent CEA blood test shows levels are slightly raised. I don’t even know what this all means. Help,
Gill
Hi Gill,just wanted to send you a hug too .You could give the helpline a ring and see if one of the nurses could answer your question re the blood test .
Oh Guys, thank-you. Just knowing you are there makes all the difference. And Helena, I had forgotten about tough-pants, they must have slipped to the back of the knicker drawer due to feeling so well and happy up until a couple of weeks ago. I am off in search of them…
How is the bowling season going, by the way. Are you heading towards being your local ladies champion? Or is being a bit of a bandit more your style.
The field is great by the way, we have made huge inroads into the nettles, planted mallow, teasels and ox-eye daisies and various fruit trees. This week we have harvested blue berries (enough to make a pie) and elder flowers (I’m making elderflower champange (alcoholic).
I think you are right Jak about being constantly monitored, I think also that because of the BC it makes all other health issues much more of a worry, just in case. In a way I think that I’ve got to get used to living with the uncertainty and try not to let it stop me living life to the full. How is life in your part of the country, is it beautiful this time of year?
Hi Sue and Jill. Hope all is good with you, I’ve asked the question on the ‘ask the nurse’ bit of the forum, reply to follow. Meanwhile I have arranged my scan for next Thursday (thank-you Beneden). And no I’m off to chase the muntjak that is eating my yellow day lillies out of the garden.
Gillx
Happy Birthday Jak.
I hope your family make a great fuss of you. I wish I could do clever things like Helena, posting things on the forum.
I couldn’t bring myself to chase our muntjak away though. She looks so happy sitting in the sun, and at least she is only chewing the grass now.
Gillx
Hi Guys,
Thanks for asking Jak. I’m a bit up and down to be honest and I’m still frantically searching for my tough pants. My brother and his wife are coming for dinner and overnight at about 6.30 and I’m just not in the mood, I don’t think they know about this scan but I will have to mention it because I don’t think I am up to blagging it. Poor old Alan is cooking though and I am sure it will be lovely.
I think I am struggling with the fact that I don’t know were I am until I get the scan done and somebody explains about the blood test result. And it was this time last year the BC thing started, so I’m just thinking, not again… It’s so hard upsetting Alan and the girls again. The scan arose because I was having bad constipation, which is fine now I think I just got dehydrated, but also vaginal discomfort which has come on in the last few weeks. TMI? Sorry. Thanks for listening.
Enough about me, what are you all up to today? And how are you all? Jak how was the birthday celebration?
We are right in the middle of a huge thunderstorm here, hail stones too. We are eating in the conservatory tonight and I love to hear the rain.
Love Gillx
Hi winter warmers! Jak, happy birthday, a bit late now but I expect you still have your cards up!
Gillie Ann, sending you a big hug, it’s really tough when something shows up that just might be something but very probably isn’t. Until you actually hear them say everything’s fine, your mind goes off at an hundred miles an hour. And when it’s happened to you once, you lose confidence in your body. I hope you get reassurance soon, I’ll be thinking of you when you have that scan.
Well, my news is that I’m back in hospital on Friday for another operation, on the other side this time. I’m having lift and reduction surgery to the good side to hopefully create a match for the operated side, which is now very different in size.
All along I’ve known I would need this surgery and was looking forward to getting it done. I have to wear a partial prosthetic which is hot and heavy and a real passion killer, I hate even looking at it. But now the date is almost here, I keep having flashbacks to this time last year. The operation is the anniversary of my diagnosis being confirmed.(It took six weeks to get to that point, so it was a long drawn out and scary time, and I was in a real state emotionally by the time I finally got it confirmed.)
Sometimes I can’t believe I’m doing this again voluntarily, I think it’s like childbirth…as the day gets closer you suddenly remember what it was really like. Time to get a grip I think…