A very helpful reminder, Liz, from your friend. Cancer doesn't wait until our lives are running perfectly well (mine never has) but instead it gatecrashes uninvited into the middle of all the existing, difficult problems and takes over, it causes havoc - for a long, long time. It's hard to manage this extra, unwanted guest and to get it to leave.
Thank you for sharing your friend's message.
I really identify with it, especially the part about taking each day as it comes.
Some days I start to feel I am returning to some sort of normal, and then boom! the following day I feel back to square one. Tired, tearful and scared.
Thank you for sharing.
That is so true. It's still with you mentally as well. You have support however unless they have been through it they dont understand mentally what we are feeling.
This group is wonderful . Thank you xxx
It does sounds like we're trying to make sense of one thing or another.
One of my friends who is an Occupational Health Nurse has supported lots of ladies through cancer diagnosis and treatment. She sent me a message along the following lines this week which I found particularly helpful.
In the majority of people a cancer diagnosis is life changing, irrespective of how positive the prognosis.
Couple this with whatever life challenges we may already be facing, whether that be other health problems, looking after a young family, supporting older parents, a recent bereavement or work demands and not to mention, for us post menopausal ladies, the dreaded shrinking hormones. No wonder we are struggling with it all!
From her experience of talking to people, the end of treatment, when the safety of regular tests and checks end, is a point where feelings such as fear, sadness and even anger can manifest. All that on top of the our bodies needing time to recover from the physical effects of our treatment.
It's a case of embracing our feelings, take each day as it comes, be kind to ourselves and manage expectations (our own first and foremost) in relation to how quickly we will put it behind us.
Sorry, a bit of a long post but hopefully her message might speak to some of you too.
Lots of love
Thank you. I will have a look. I was already going to physio for me knee and they have booked me in for Po Nreast Cancer 6 weeks get back into excercise. I said I had no energy to do any.. so please with that.
Susie, that is so kind! Your chemo group sounds very supportive for you all, you have been through so much together. There are so many anniversaries - finding the lumps, then diagnosis, later on they'll be first mammogram, then surgery anniversary and lastly rads anniversary. I didn't have chemo. Then it all starts over again!
Anniversaries are always difficult. We just remarking the other day how all us in the February 19 thread are fast approaching the anniversary of the start of our chemo treatment. The energy levels will return in time. Some of the girls have returned to the gym or started swimming or walking. Just take things slow and steady, you'll get there.
Some of us posted on our thread today so if you want to chat or need a little boost pop in and we'll se what we can do for you. That goes for any of you here.
Susie B xx
Hope the side effects of the infusion have settled down. Maybe next time you'll be fine. Glad your lymphodema check was okay, Susie. Hope everyone else and Redfox and Fleur are managing. I am making some progress, have some energy instead of none. Emotionally am a bit up and down just now. It's a year today since I was first diagnosed so that could be the reason.
love to you all
My infusion went fine overall. I got a got anxious when they were working out how to get round me being on holiday when I should be having my follow up blood test to check my kidney function but I hardly noticed the treatment itself. The nurse was very reassuring and as I was too busy chatting to my friend!
I've been tired and headachy since which hasn't cleared yet but nothing too horrible.
I hope you strong ladies are feeling better bit by bit. Green shoots of daffodils are starting to show here - I'm taking them as a sign of spring and new positive energy on it's way for all of us.
My lymphodeama check up was fine thank you. Back again in 3 months. I hope the infusion went ok. Good to know you had a friend with you.
Susie B xx
Thanks for thinking of me Susie. I hope your lymphodema check goes ok today too. Let' us know how you get on.
I'm feeling a bit nervous but fortunately I didnt have to have chemo so at least I dont have any bad memories of the ward. My friend is taking me so I'll be less stressed if there's no parking spaces and we're planning to go for coffee afterwards.
I'll let you know how it goes
Hope the infusion goes ok today. After chemo the time spent having it is really short. Saline infusion and the Tranesmatic acid and that's about it. The worst part was being back on the unit again but the nurses were wonderful and I soon relaxed. As for side effects we're all different but I haven't come across anybody yet who had problems with their 2nd infusion so don't worry too much if you do get the flu like symptoms.
Susie B xx
Good to hear from you as well. I think a lot of us are feeling like you - not quite knowing who we are now. For me it's a loss of interest in the things I used to enjoy as well as not too much energy or drive. I am feeling less tired now - my rads finished the end of October and I am hoping that come the spring, my energy levels will improve. I am trying to get small things done as that helps me feel I am making some progress. Didn't make any New Year resolutions though.
You were unlucky in having to cope with shingles on top of radiotherapy so no wonder you were so tired afterwards.
Keep well and look after yourself.
Reading Sandpipers post, I thought I would also recommend the'Someone Like Me' service.
I have used it at different times throughout my diagnosis and treatment and found it brilliant. I spoke to several different ladies who were very supportive.
It is lovely to catch up with you all and I send you all big hugs, as we still need them !
I did struggle with debilitating tiredness for some weeks after rads ended and recovering from Shingles , but am now feeling a bit more 'normal', although I still have to pace myself.
I must admit I am not quite sure who I am now? I dont know if anyone can identify with this?
But coming into this New Year feels like turning a new page.
Love to all
Had you thought of contacting the 'Someone like me' service here? There's a form on the main website here under information and support - support for you. I had thought of trying it but haven't up to now. Also if you click on the the section 'Near you' there is a list of all the 'Moving Forward' courses which are held all over the UK, there are lots of them. That's how I found the course I've booked on. Even though you've got good friends to lean on extra support can never be a bad idea.
Support is very quiet at mo. Basically silent
I did call cancer nurse twice just got oh it's part of the effects after radiotherapy. I have several friends who are supporting. But be honest it would of been nice to have a quick check up before march.
Fingers crossed you are okay on Friday, Libby, for your infusion and you too, Susie, for your lymphodema check. I have booked on the BCN Moving Forward course (3 sessions) in March, so I hope this will help. Glad you are finding the Macmillan course helpful, Libby. Good you are getting so much mutual support from your Feb 19 chemo starters, Susie. Have you been able to get much support, Redfox?
If anyone can get to Bristol or London - 'Move, Dance, Feel' (Emily Jenkins) run free drop in dance sessions for women affected by cancer (all ages). They are lovely sessions, very supportive and they reach parts that of you that talking doesn't. I thought I would feel stupid, but I didn't I did them before rads - not quite got the energy to return as yet. The Bristol ones are new and are at the Penny Brohn Centre, Bristol, London ones at Maggies, Barts, and Paul's Cancer Centre near Clapham Junction.
I'll be thinking of you Friday. I've got my 3 monthly lymphedema check on Friday so I'll remember. Your course sounds good. Here in Yeovil we just have the offer of a morning session post treatment covering just a few if the basics. I had the offer of attending last Friday but I didn't know how I'd be after the infusion. I'm down to go on the next one. We do have cancer care workers at the hospital who look after our mental health during and after treatment.
Susie B xx
Thank you for the update. I'm glad your infusion was ok and you didn't have too many after effects. Its reassuring to hear, when quite a few people seem to have taken a while to recover. My infusion is this Friday 17th.
I've read that article a few times Sandpiper. Its helped me a lot. I'm on week 2 of a Macmillan Starting Over Course at the moment. It's really, really good and helping me think much more positively. If any of you lovely ladies get offered the chance to attend something similar, I'd highly recommend it.
Love & Hugs
Well I had my Zolendronic acid infusion and the only side effect was a slight headache the next morning which soon disappeared with the help of a couple of paracetamo. I did take a couple after infusion and at bed time just incase there was any immediate problems. I must add that I coped really well throughout my chemo and had no problems after my flu jab.
Sandpiper that article sounds interesting, I'll have a read sometime. Many of us in the February 19 group are still having problems with fatigue, lack of enthusiasm, doubts about the future etc.
Hope you manage the Zoledronic acid ok Libby10. When are you having it?
Susie B xx
Good to hear from you all, Susie as well. When I took my first weekly alendronic acid tablet I felt headachy, bit sick and fluey for couple of days and thought I would feel like that every time, but no problems since. Redfox I don't think Tamoxifen thins your bones in the same way that letrozole can as it works in a different way.
About not having much energy or enthusiasm for anything much post treatment. I've been reading the article by Dr Harvey - After Treatment Finishes - Then What? - Jaybro and others of this forum have recommended it. He talks about different stages of recovery after treatment and names them as recuperation, convalescence, rehabilitation - there are more, I think - it's a long article but very reassuring.
I think I'm somewhere between convalescence and rehabilitation still. I've also found the book (also recommended on this forum - The Cancer Survivor's Companion - Practical Ways to cope with your feelings after cancer (Goodhart and Atkins) very encouraging to.
Thanks for the update. One of the ladies in our group had flu like symptoms for 1 day after her infusion. She had her 2nd one last Thursday and didn't have any side effects afterwards so fingers crossed it's just the first one that causes problems. I'll keep you posted.
Its lovely to hear from you all and how you're all doing. It's reassuring yet again that we all seem to be experiencing the same sorts of feelings.
I'd be interested to hear how your infusion goes Susie. I hope you dont find it hard going back to the unit. My oncologist said its quite common to get flu like symptoms from the day after the infusion for 4 days after and advised me take 4 doses of paracetamol a day for the 4 days before and 4 days after the infusion as a way of reducing the symptoms. The 3 ladies I've spoken to all felt unwell for the 4 days so if you haven't taken anything it may be worth starting on the paracetamol straightaway.
I wasn't going to do a follow up but here I am! I'm much the same as some of you, bit tired, not much enthusiasm and a little apprehensive about the future. I was told after rads that I may feel a bit low so it's not unexpected. As I am triple negative and post menopausal I am having the first of 6 Zolendronic acid infusions over the next 3 years tomorrow. If I get a chance I'll pop back and let you know how the infusion went. Not sure how I'll feel returning to the unit for more treatment. I was there just before Xmas but that was because I have volunteered to go on another trial, Add-Aspirin. It's to see if taking aspirin can slow down or prevent recurrence of certain cancers, not just breast cancer.
As for support I've had plenty from our Feb 19 group. We chat every day on Facebook Messenger. Post chemo curls is our top topic at the moment 🤣.
Take care xx
When I have follow up I got to mention the bone test for osteoporosis. As I think hormone tablets do affect.
I still do get tired and totally agree with enthusiasm yeah even at work i have had a mask on some times. Xmas felt different as well I'm usually bojnch jolly but yeah has knocked me back. I have cried a few times but have talked to friends, family. Definitely agree mental health, let it out scream, shout, cry. Make time for yourself if has now made me look at life differently.
Hello. I had early stage. Wire excursion then radiotherapy. They said after operation they removed cancer and lymph node they removed no cancer. J have been tired. Have had uncomfortable feeling just under breast been told its after effects. On Tamoxifen. As I was already peri menopause I'm now menopause so that's one thing out of way. As I think i wrote before follow on March. Did read info on back of letter and it does say it will go quiet for a while. So glad you lovely ladies are ok xxc
Hello Redfox and Libby,
Good to hear from you both and glad you are doing well. I was a bit like you, Libby, for a while after rads. Also had to pace myself as I used to suddenly feel very tired and needing to have a nap. I had to be careful only to do one extra activity or commitment a week - now I can manage two without wilting! I have yet to regain much enthusiasm and energy for the things I used to enjoy but maybe I will by the spring.
I have nurse follow up this month, I think and hospital one before Easter.
Libby, hope Zoledronic acid infusion goes well for you next week. I'm on alendrotnic acid tablets weekly and have been fine. No problems with letrozole either. What follow up are you having Redfox? Glad you posted.
It's good to hear from you. I found it quite hard for the 1st month or so after my radiotherapy finished mainly from an emotional point of view and coming to terms with everything thats happened since I was diagnosed. I am doing better now. Got my first Zoledronic acid infusion next week so a bit nervous about that. Sure it'll be fine.
How are you doing Redfox? Weren't you having to wait til March for your follow up appointment? Seems such a long time.
Love & Hugs
Just popped in for a final update as we all come to the end of radiotherapy. My skin has survived fairly well so far although I do have 2 rather nasty, red patches on and just above my colar bone. Fortunately there are no signs of the skin breaking down so far. The skin within the zapped area on my boob is pink and I'm hoping it doesn't get any worse. As for my hair I've just had a few reddish high-lites put through. A full covering of colour will have to wait a while. Everything feels a bit strange at the moment having had months of treatment and hospital appointments, almost a case of 'What now?' I think just about everyone in our February 19 group felt and stil feel the same. We chat on Facebook Messenger now rather than on this site. Until Feb I never thought forums would be for me. How wrong was I? My group has been my life saver but joining here has been good as I was the last in our group to have radiotherapy. So now it's time to wish you all well for the future. I intend to pop into some of the forums, especially the Triple Negative one, so I won't be abandoning this site altogether.
Take care. Susie B. xxx
As Libby says almost everyone has finished or almost finished radiotherapy sessions. I think Claire is nearly there and Sunflower finishes on Monday. Thanks for your kind words, Libby and Susie, I'm glad this thread has been of help - it certainly has been for me. This is the first forum I've joined as well - I was on the July 19 surgery thread before beginning this one. I sort of felt a bit responsible for everyone who joined this thread, I didn't want anyone to feel left out or feel alone. I think it is easy to feel alone when diagnosed with breast cancer whether or not you have good support. Radiotherapy has been such an odd process to go through, it was the treatment I was most nervous of. I read about all the possible side effects but they have been minimal for me so far. Fingers crossed. I agree with your Libby that we all need to give ourselves time as it is a life changing process. Hope your counselling sessions help. I don't know quite how I am at the moment. Susie I hope you're pleased with your new hair colouring. Sunflower - I am counting off the days for you.
Look after yourselves
Just read your post and much of what you have written mirror my thoughts too. I'll pop in later today or tomorrow for a final update for everyone. I had my last rads on Saturday but I hadn't really comprehended that that also signalled the end of all my treatment so I'm trying to get my head around that at the moment. Doing a normal pre-chemo thing and having my hair cut and coloured this morning😊. May only be foils or cap as my hairdresser doesn't want the dye to touch my scalp just yet, but it's a start,
Take care everyone xxx
I've gone to write this post a couple of times and not been able to find the right words somehow. It might be something to do with closure as most of our little group has nearly finished so we're getting close to the end of this thread.
I'd have liked to recognise where everyone is up to individually but am finding that difficult to work out properly now. I believe most of us have finished apart from you Sunflower and I think you are probably more or less on your last week? I hope its becoming more routine and less stressful now and finishing wont be too overwhelming.
If you've finished I hope you're finding it OK getting to a sense of new 'normal'. Sandpiper, I hope you're starting to fel less flat bit by bit. I think we need to give ourselves time. Its a big life changing experience weve gone through. Caz, I admire your sense of just getting on and enjoying life.
I felt quite unsure about going to my 1st counselling session last week as I do feel better in myself from when I was referred and there are so many people on a tougher roller coaster than me. Maybe not, I was sobbing as soon as I started to talk about everything. I didnt realise quite how much I've been holding in. l've got 6 sessions and I do think they will help me move on. If youre finding life tough ladies, do reach out for help.
I also want to say how much this thread has helped me and to thank you all so much for your suggestions, comments and reassurance. Especially thank you to you Sandpiper for starting it and for taking the time to follow where everyone has been up to and asking after people individually. Its certainly help me feel supported. I've never used an online forum before but it has been such a relief to hear other people having the same sort of emotions, fears, worries and to have been given reassurance and good advice in a way my family and friends havent been able to understand. If there is anyone who has been reading our thread but unsure about participating on the fotum, I would say, dont hold back, it will definitely help.
I'm planning to follow some of the other sections of the forum so may well chat to some of you again there.
Take care everyone and much love to you all
Hope everyone coming to the end of rads are managing and everyone who has finished are recovering well.
Redfox - thank you for your lovely message and I hope you stay strong too. Susie - Congratulations! By now you'll have had your bubbly. What a good idea, I liked the idea of having treats after each block of treatment, I wish I'd thought of that. It's been a long haul for you with twenty sessions. It took me a while to get used to not going for rads everyday but okay now. Skin is fine now. I have felt a bit flat and haven't felt like getting back to the activities I used to do. I hope that will pass. I could do with a bit more energy and drive as I have a lot of things that need to be done especially coming up to Christmas.
Look after yourselves and keep well.
Having my 20th and final zapping this evening at 7:45. What a way to spend Saturday night😀. Skin isn't doing too badly, there's redness over the collar bone and my boob, which gets itchy at times. I had a lovely review chat with the radiology specialist nurse on Thursday who gave me loads of information regarding post treatment. Have a bottle of bubbly in the fridge to come home to. Treats big and small after each block of treatment have kept me going. Will drop in next week for a final pop in. xx
thank you everyone Sandpiper. libby10 for your lovely words. I have read my follow on letter again and it says it will go quiet until March with my appointment, it also mentions the bone density assessment as well so I make sure I ask about that.. I read my letter again that the surgeon sent to my doctor I asked for copies .and I feeling better in my self.
if I don't reply for a while. I wish you all amazing wonderful. warriors. love and hugs and hope what ever your next path for treatment you stay strong. xxxx
Am feeling more or less back to normal now, still caught out by sudden tiredness sometimes. Caz - enjoy your weekends away in December and January. Redfox - hope you're feeling relieved about finishing. Finishing is as emotional as starting, I think, because it usually the end of the invasive treatments. Just keep taking the tablets now. Libby - I'm so glad you had a good holiday. Where do you get your energy from for yoga, pilates and cycling! Don't over do it. I hope you get a lot of benefit from counselling as well. Susie - I thought I would wait and see about the dents, sometimes radiotherapy causes swelling or shrinking. I'm not sure if it's bad enough for lipofilling and it sounds a bit of a hassle. Even though they said there might be dents I didn't think there would be. The lumps were bigger than appeared on the ultrasound so that's why they took so much out. My scar has flattened now, like your one has. You're nearly there with yours - a long haul so no wonder you are feeling emotional and stressed. It's coming up to my anniversary as well, it was 13th December when I first found a lump and had to wait over Christmas and New Year before first breast clinic appt. I remember vividly my first time there.
Wishing everyone well.
Number 15 finished and feeling as other have said a bit emotional especially as a big bouquet of flowers came from work today. Have follow up appointment after Xmas. Decided that I’m just going to get on with life and enjoy my early retirement, off to pub quiz tonight, looking forward to weekend in London December and weekend away January for husbands 60th.
Thank you all for your support on this forum and good luck and best wishes to you all.
Had the first of my 5 boosters yesterday. For some reason I was fairly stressed and couldn't relax. Took ages to get me in the correct position and my breath holds were pretty crap too☹. Maybe it's because I'm nearing the end of my active treatment and am thinking about life after bc and not about the next round of treatment. My appts have been changed slightly this week so I am having rads today and a day off tomorrow. On Thursday I've got a review appointment with a specialist rads nurse, similar to yours I expect Sandpiper. Got a horrible feeling I'm going to up in tears😭😭😭 as I'm sure what I've been through this past year is going to hit me. I'm seeing my oncologist on the 27th when I hope to be told I can have Zolendronic acid. I'm assuming I'll have a mammogram and a follow up appointment with my onc after that.
Redfox, your appointment in March seems a long way off. My original onc appointment was for the beginning of Jan until I enquired about the Zoledronic acid. I would ask if it's correct.
Libby 10, glad your holiday went well. I understand you wanting to have something other than pre-treatment and post-treatment thoughts and memories. I'm hoping our trip to London will do the same. We're due to go a year after I was diagnosed and when active treatment for me has ended so I'm hoping to put some kind of closure on the past year and start a new chapter in my life.
Sandpiper, you mentioned your larger than expected dents and smaller boob. Has anyone asked if you wanted surgery to either fill in the dents or have evening up surgery so both boobs are the same size. Two of the girls in our Feb group have been offered the filling in option and another has just had a boob reduction so her good boob is now the same size as her bad one.
As for me my lumpectomy site is not quite as flat as it was thanks to rads but not too noticeable. The skin within the zapping area is a bit warm and pink and I now have a pink area behind my left shoulder which I wad told may happen. My skin is checked by the radiologists on each occasion now. Can't fault the care I've received, the whole team are brilliant😊.
Take care everyone and hope those of you still zapping along with me have a good week. xx
Finishing is a strange feeling so completely normal to feel emotional.
March seems a long time for a follow up. It could be worth checking if you should expect anything sooner with your BCN if you have one.
Enjoy your evening.
my 15th today. got emotional as they have been fantastic.
don't know what to do now. wait for my appointment I believe is in March 2020.
Take care everyone.
Good to hear that most of you are nearly there on your rads now or have completed. One blessing for most of us is that we are all done by Christmas.
Sunflower, I hope it feels better to be able to say you’re almost all the way through now.
Sandpiper, I felt a bit flat after my treatment finished too. So glad we had the holiday to look forward to as it’s given me a kind of before and after the holiday feeling as opposed to a before and after treatment which feels more positive, if that makes sense.
Our holiday was lovely. I was super careful in the sun and avoided the pool. I ended up using the factor 50 as it just felt safer. Thanks again for your advice Susie B, redfox and Caz. The itchiness and dryness did continue through the holiday but has it more or less gone now. I bought a pretty high neck swimsuit from ‘Nicola Jane’ which worked well. Just thinking now that maybe if I’d used factor 30 on my ‘good’ boob they might match better!
I have my 1st counselling session this week and a ‘self-supported management’ appt with my BCN a week today. I don’t see my oncologist until 3 Dec.
I am venturing back to yoga today. Its one of the things I’ve missed most so I’m really looking forward to it. I’m planning to start back with Pilates and cycling in the next week or so.
I hope you all get to complete the final stages of your treatment with no hitches.
Love & hugs
Redfox - you are nearly there! I found I missed going after I finished for a while. Then day to day life takes over again and it was nice not to have to plan life around my rads timetable. I did get good care and support there - an appointment with specialist rads nurse near the end, a follow up phone call from her a week later. I had oncology follow up appointment this week - she is lovely, very normal and had proper time for discussion. I felt reassured that I'd made the right decision to have the rads as it was the part of the treatment I felt most apprehensive about. In fact, I seriously considered having a mastectomy as I was offered the choice so I could avoid rads, but it's been ok. Still feeling a battered as the surgeon took a fair sized chunk out when I had WLE so am left with dents and smaller than before, so not great, a bit disappointed if I'm honest. But the right decision to make the choices I did. Susie - this time tomorrow you'll be halfway through. I agree, not how you would choose to spend a Saturday night! I had a Sunday appointment one time - such fun.
Have a good weekend
14th today. got emotional. The team Royal Marsden Sutton Cedar Unit. the support. kindness.carer fantastic.they make this journey did not choose in our lives a challenge .but we are all strong.warriors fighters we never give up. 1 more to go. take care all xxxx
Just a quick pop in. Had rads no 14 of 20 this morning. Have another session tomorrow evening. Can't think of anything better to do on a Saturday night😅😅. Skin is a bit warm and pink but that's about it. Using E45 and aloe vera daily, not at the same time may I add😆. Having my hair cut and coloured after rads will be another step towards getting back to some kind of normality. I see my onc on the 27th when I hope to be told I can have Zolendronic acid.
Have a lovely weekend everybody. xx
Hope everyone is managing reasonably well or even very well. I'm doing okay - skin is the same, slightly pink but not causing any trouble. It should get slowly better from now on in as I finished over two weeks ago. Have a nurse follow up post treatment assessment in a couple of months and saw the oncologist this week.
Redfox - hope things are improving for you. Caz - how is early retirement going? It will be a bit strange not having so many hospital appointments coming up. Going back to work is a bit drastic, though, how about a post rads holiday? Sunflower - at last you have started rads! How are you? Have you been able to begin to get used to them or is it still surreal? I found them strange for a while. I'm glad to be finished though. Susie - I've been keeping the results letters but shredding the appointment ones. Are you having 20 sessions or 15? It will be wonderful for you to put your wig up in the loft and to have your hair coloured in time for Christmas. Hope the gremlins stay away from you forever. Last Christmas I was waiting for the appointment for the Breast Clinic to come through. Fleur - hope that your shingles is improving. Hi to everyone - Spicey, Sunshine Sal, Teya, Tina-Ann, Liz, Chara and anyone I have left out accidentally.
4 more left. boob getting pinker had uncomfortable weekend side of boob. they took x-ray and said everything ok. could be cause near scar tissue. I am still doing those exercises . take care everyone xxx
Sorry to read you were so worried about treatment Sunflower 14, it’s very strange experience and none of us would choose to be doing it. I have got 4 to go and apart from boob feeling a bit swollen and skin red, I have been using aloe vera gel twice a day, It’s fine after a few sessions and the staff are all so lovely. I feel it will be after I finish as you are not involved at the hospital until your next mammogram in a years time I will feel a bit lost, may have to go back to work??
Glad everyone else is nearly there.