I’ve been feeling tired (due to night sweats) & anxious this week due to having my appointment with oncologist today 9 weeks after finishing radiotherapy just to check everything is ok. And everything is! My next appointment is for a mammogram next April then one with oncologist in 12 months time. But that is unless in the meantime I find another lump or have any bone pain indicating it may have spread. And that’s the problem isn’t it - everything’s ok unless… I expected to come home feeling less stressed & with a ‘just get on with it now’ attitude but I haven’t. Am I alone in feeling like this?
Anita, you are not alone!!! Many of us seem to feel almost ‘abandoned’, although really this is actually good as it means we don’t need any other treatment. I’ve been put on the PIFU in Wiltshire, which is Patient Initiated Follow Up, where like you say, if you find anything strange you then contact the PIFU (or as I’ve called it Piss Off and look after yourself). Actually, now almost 1 1/2 years since WLE, I do feel able to cope, and not thinking about what I’ve been through every minute of every day (and what I’ve been through is so mild compared to so many of the lovely ladies on here). It is really difficult to stop thinking that every ache and pain is something sinister, but eventually a day dawns and you realise you aren’t obsessing quite as much. Keep coming on this site and telling us all how you are feeling, as I really found such support from the wonderful people here, we all understand.:catvery-happy:
Anita I felt quite wobbly after treatment finished too, after months of appointments, tests, etc suddenly it’s go away and we will see you next year unless you have any worries! I didn’t even have a rads following up either, never saw my ONC again! I had palpitations for ages afterwards and it took a good few months to start feeling part of the real world again, things get better though and you will settle down Xx Jo
Hi Anita,
thank you for starting this thread.
For the first time, since my diagnosis in January I had a complete melt down yesterday. I felt I could not share it with those on my relevant monthly chemo thread - as I know it gets read by many, who will still be going through chemo. It is challenging enough for them to handle that and feel they do not really need to know yet, what can happen post treatment.
Mind you, I am not completely post treatment yet - I still have the radiotherapy to go in 4 weeks and then it will be onto Letrozole for 10 years.
I am on my own, with my mum in Germany. I worked 11 days out of 21 throughout my chemo. My last chemo was September 1. This Monday I am expected to be back - full time, fully functioning and with no break in sight, as my holiday allocation has been used up by spending days in A&E, etc. The week I was off I have only been paid statutory sickness pay - so I cannot consider to have further weeks off, due to the severe financial strain this has put me under.
When skyping with my mum yesterday - all what has happened, the enormity of it all, hit me like a freight train. So mentally and emotionally not in the best of places at the moment.
If I had not gone for that mammogram in December, I would not have known, as I could not feel a lump - and I would have beed dead within 2-3 years. Very scary, but also positive. I have literally cheated death. The lobular invasive was all over my breast, being 11cm in size. I am a 36B, so quite small in that department. It is now gone. Miraculously no node involvement. Another positive. CT scan clear - another positive.
Finding this site and forum and supporting others - has been and will in the future - a life line for me. Others are struggling so much more, than I do. I hope I can make it just that little bit easier - not to have to face some of the challenges, problems and lack of information I had to face.
I am physically and emotionally so exhausted.
Unfortunatly the ‘chemo brain’ has captured me - and as I am a Business Development Manager, constantly required to gain new clients and then making sure they have the right service delivery - is becoming a challenging task, whilst previously it was so easy. Lack of being able to concentrate on anything for more than 10 minutes is a struggle. Dealing with a lot of different information, having to disseminate it and act on it is nearly impossible. Everything takes 3 to 4 times as long to do than it did before it all began.
Cancer fatigue has also set in with vengance - I tend to be ok in the mornings, but when it comes to the afternoon I am utterly exhausted and find even walking very hard work. I am struggling to keep my place tidy and do the tasks which need to be done on a daily basis.
It is such a struggle to put on the ‘face’ every day, so one looks acceptable for ones surroundings - just popping to the shops means carefully drawn on eye brows and eye liner.
Next week it will be hot again and humid. And I am expected to go cold calling in town centres and industrial estates. I know I cannot do it. I would have to wear my wig and be in full make up - I will melt, literally - I did before. The hot flushes and the heat…unbearable, exhausting. I had heat exhaustion not so long ago doing this through another hot spell.
Having to explain the detail of why I cannot do specific things, laying it all bare to my employer in detail, is something I should not have to do, but I have to. I have to fight and argue every little point to gain understanding, that it is not unwillingness, but simply the circumstances of treatment and that he is actually obliged to make reasonable adjustments. But then - fatigue to him is simply tiredness that can be addressed by a good nights sleep. He thinks that you recover after a chemo treatment - the way you recover after a cold. Having to do this with a cancer/chemo induced cognitive dysfunction is very difficult and emotionally and physically exhausting.
It is so true, unless you have actually been there you really do not know or can sympathise or understand.
I know I will lose my job either this month or next month, as I have not been able to deliver, what I was supposed to. I started my new job, after 9 months of unemployment, shortly after my diagnosis. As a person seeking alternatives, i started my own little business, during the times I was sofa bound, post chemo - and it is home based. But of course, have neither had the time, nor energy to build it adequately to support me, when my job is gone.
Yes, I have income protection insurance, however that will only be paid, if I receive job seekers allowance. And I am fearful I might not get that, because of not being able to commit to seeking work within a 90 minute commute, being limited by the kind of work I can do, not being able to work a full 40 hour week at the moment. I am physically simply not fit enough to do that at this point. My immune system needs to recover, as does the whole of my broken body. Although aware there are other benefits - those benefits will just about pay for my rent, and nothing else. And the insurance company will only accept the claim if on job seekers allowance. I am so worried about defaulting on my rent, my lease car,
broadband and phone, because if the Job centre is not flexible enough to still put me onto jsa - I will end up in deep debt with no way out. As I am on my own, I do not even qualify for council housing - and would eventually end up in a b&b or a hostel. I really do not live in luxury, lol - the average rent for a one bedroom flat in East Sussex is £805. Whilst the housing benefit you would receive for it is £450. So the maths are a no brainer…It is so horrible to be punished by the system for having a cancer diagnosis and all that this entails.
I will be fine - I am strong and a very positive person - this melt down was to be expected at some point and I will get out of it. I have so much to look forward to - building my own little business, becoming healthy again, losing some weight that sneeked on through chemo, because of steroids - and many years to come. Yes, I know it can come back and despite all, it might have sneeked elsewhere. If it does - I will have my new business established and will be able to go through all the treatment and whatever might get thrown at me - again - but then on my terms, not others.
Thank you for letting me put all of this down - it is helping.
Sue xx
Sue, you are so brilliant at supporting everyone on here and I’m so sorry it’s hit you hard the last few days. You deserve a supportive work environment. Have you got a Macmillan specialist benefits advisor in your area? If you’re not yet fit for work emotionally, you may be entitled to more financial support. I’m lucky as still getting paid, but will reduce shortly and I can’t do my job until all sorted unfortunately. A big hug to you xx
Hi Sue
Reasonable adjustments go way beyond what they’ve “supported”. Where in Sussex are you? I grew up in East Sussex and went back to work there for a couple of years before heading back “home” to Devon. Being outdoors is my sanity and have been planting up small pots of bulbs today to give some focus for next Spring. I’m hoping to swerve Chemo but won’t know for a few more days. My employer has said statutory sick pay for 6 months then will need to claim ESA, bizarrely about £12 more each week! Xx
Sue I know it well, as I was living in Ridgewood near Uckfield a few years ago, working across Conquest and Eastbourne. It’s very beautiful. Charys, you are a wise soul. I went for counselling shortly after diagnosis, with an equally wise soul. She told me to let myself be vulnerable with friends and family and to stop seeing it as “just breast cancer”. i hate the low days, but the good ones are great and normally after a day in the garden - tonight a bit of Poldark escapism. Sue I hope Macmillan can help. Xx
Hi to everyone
Anita - So glad you’ve been “signed off” so to speak, and No, it isn’t unusual to feel as you do. You’ve been taken care of in a “close and safe” support network to do the best for you for quite some time. Consciously or subconsciously you’ve come to rely and depend on them or it and you now feel it’s gone and you are now left to just get on with your life. Don’t panic,they are and will still be there for you should further problems arise. Try not to worry, but do remain sensibly vigilant, aware - there’s a difference between that and being obsessive or psychotic. If something arises in the future that you’re concerned about, have it checked out asap. Don’t ever think you’re worrying about nothing, because you’re not. You’ve been through and recovered from the effects a serious disease that no GP or medic is going to ignore, and, if they are conscientious, they will want to help allay any fears you may have.
Following a mastectomy and full ANC 2005, I felt a small lump near the underarm of my remaining boob only 8 months later. Thought it couldn’t possibly be anything serious so soon after. But mentioned it anyway to my BCN, who could also feel what I was talking about. Had it checked out and it turned out to be another primary. What are the chances of that.Good luck and I hope you stay and remain clear forever more x
Sue - I’m so sorry to hear about your employment issues and therefore financial implications/worries. It’s difficult enough having to deal with and recover from all that you’ve been through, especially on your own. Do you still have that unswayed fella in your life?? and some good friends to lean on, offload onto and support you in your weaker moments??
I was not at all surprised by your recent “crash”. I was begining to think you were Superhuman and not from this planet, but you are only human. There you are being so strong and supportive to others, BUT . . . you do need it yourself sometimes. We all do. Why didn’t you feel you could tell your chums on your chemo thread?? Don’t you think they want to be there for you too?? Course they do and will. Don’t be afraid to show your vulnerabilities. I’m sooo glad you have done here.
You are still having to readjust to the sometimes far reaching mental and physical after effects/ripples that this disease can leave you with. Some are “hidden” and certain triggers cause them to surface. It’s easy to underestimate just how much the experience of this disease can disturb/affect so many different areas of our lives and HIT us unexpectedly when something comes along that triggers them
Please don’t expect too much of yourself, don’t be too hard on yourself. Have a good weep, sob, let it flow. It’s GOOD for you and it’s not being weak.
I still haven’t recovered mentally from the effects of losing my 2nd boob 9 yrs ago. Smashed my confidence to bits, as like you, I was still single and is one of the main reasons I’m still single at 57. But its had many other long term effects in other areas of my life too.
The Macmillan advisors will help and will actually correspond or make applications on your behalf if need be. Citizens Advice may also be able to help with employment issues in your circumstances. I’ve had a recent experience with needing to get work, in that I’m not entitled to benefits because of various funds I have in the bank (inheritance) that I have now been living off for 4 years and are precious because I don’t have anything worthwhile set up private pension wise from a number of “lean” self employment years. I went down to the Jobcentre for some help in getting back into the workplace + advice on skills to hone up on to increase my chances, only to be told “If you’re not on jobseekers allowance, we can’t help you” !! So who or what do I turn to for help. This job seeking is all alien to me having been self employed for 20 odd years and the process of finding and applying for work is totally different now. Not a case of vacant jobs being advertised in the paper as used to be and/or dropping your cv into places for them to keep on file. It’s now having to spend time going into all the different companies websites to find vacancies and then, if they have any, applying on line blah blah.
What’s the business you’ve been setting up? I’m presuming it’s related to Business Development is it?
Lotsa love
Delly xxxx
Thanks Delly - yes we are ‘signed off’ but not really & I think sometimes that’s the hard part. But you are so right be vigilant but not obsessive. I think only time will help with that & I’ve got to be patient. I really do feel for all of you who have to work through this & don’t have the time to be kind to yourselves. I haven’t had chemo but with radiotherapy & the hormone treatment I know I would have struggled to have worked with the lack of sleep & low moods. Not that I do nothing I am a full time carer for my husband but it does mean I’m at home & can have forty winks in the day if need be & he puts up with my rants & raves when I’m having a bad day. Sending love & hugs to you all xx
I’ve just come into this forum for the first time and immediately homed in on this thread. I finished my radiotherapy in July. All through the biopsy, two ops and radiotherapy I was completely focuses and just got on with it. Now however I feel much more panicky and unsettled. I was told by everyone to put it behind me but now realise that this is much harder to do than I thought It is comforting to know this is normal I hope I feel less unsettled as time goes on
Hi Debbie
A very warm welcome to you. I guessing the people who told you to just put it all behind you haven’t experienced BC themselves, but are trying and wanting to be supportive.
You’ve come to the right place in this forum for advice, support, the shared experiences of fellow women who know. Somewhere you can express and discuss any worries and concerns, have a giggle or a sob. It really is invaluable.
I’m so pleased to hear you’ve finished your treatments. How did it all start with you, and what did you have to have done op wise. What age are you out of interest?
Lotsa love
Delly xxx
Hi Delly. I am 54 and it all started with a routine mammogram I had DCIS so had an op to get it out. They found a minute amount of invasive stuff so had to have another op to check lymph nodes which were clear Had radiotherapy after that. It was both my surgeon and oncologist who told me to put it behind me which I guess is good if they both think that! But it’s hard
Thankyou Sue. That is the first time I ve really had an interaction with someone in the same boat as me and totally understands. It means a good deal and I will keep your reply xx
Hi Sue
how are things now re your employer? I guess you have got all the advice required. i just wanted to say, we are covered by Law not to be discriminated against due to having cancer.
Im sure you are well versed in that fact by now. i really dont see how the employer can ‘let you go’ from the things you have said. However, I do think that Stress plays a big part in our disease, am even more concious now because, looking back at my tumour markers they were doubled during the month of Dads funeral and have been going down ever since.
Looking outside my own situ, I think its simply about which would cause you more stress…fighting for your rights or being financially secure. Hoping you have managed to sort this somehow.
love and hugs
Moijanxx
Hello everyone and
Hello dear Sue. We’re all rallying round for you. A very tough time for you, still having to cope with treatments and their side effects, whilst keeping a grip on your job/work/income and the worry of that on top of.
I’m hoping like mad that your employer comes up trumps for you. But hope you can find help with MacMillan etc. if not. Wishing and sending you strength to tackle all this. xx
Hazel - I thought P.I.P. was Personal Insurance Payment. An insurance policy that many people take alongside a mortgage or other loan, that covers their mortgage/loan payments should they suffer an serious illness and can’t work because of it, or become unemployed for other reasons. And I’ve been thinking that all the recent tv ads to assist reclaiming it, were to reclaim for it having been mis-sold. Just shows how ignorant I am.
Thanks for that information.
Debbie - hope you’re doing okay and managing to feel more settled in your own mind with yourself and your body again, because it’s very natural to feel, after such an experience, that your body’s let you down and difficult to trust it again. I certainly did and still do nine years later.
Lotsa love
Delly xxxx
Yeh, thanks Hazel, I’ve got it now. PPI is Payment Protection Insurance - for mortgages, loans. The PIP replaces the old Disability Allowance. I’ve learned something today.
Delly xxx
Suehoooooo, how are youhooooooo??
Are you ok and Are things progressing well and positively for you ref your health and employment dilemmas, or are you having probs??
Dellywelly xxxx
Ello Sue Flower
So are you saying you’ll be laid off your job, end of October? That’s it? Definitely?
Dellywelly xxxx
Oh Fffflip Sue, I’m not happy to hear that.
Glad you took up the advice to see the CAB. Did you have any luck with the Macmillans Advice?? Is there a help line on here for such?? Do you have any support down there??
Sorry for all the ??'s
That’s s**t on top of what else you’re having to cope n deal with. I hope it can be sorted to your favour.
Got a large spare room going here for you and Leo should you need - seriously.
Loadsa love and a massive loooong hug
Delly xxxx
Hi, I am new to this forum. I have been following it for about 2 months but this is the first time I have posted on here. It’s so nice to know that I am not on my own with my anxiety and worries. I was diagnosed in April this year after a routine mammogram. I was 58 then and I took it very, very badly. My husband has had cancer 3 times in 17 years and we know the rare type he has will come back again. No meds or treatment work for him so it 3 monthly scans and operate to remove if they can. I stupidly thought we had done enough with cancer so it couldn’t possibly happen to me as well. How daft was I! I had a Grade 2 cancer and a 13mm lump removed with the sentinel node.This node was slightly affected by cancer cells so was offered a radiotherapy trial to mop up just in case. I opted for lymph node removal as I couldn’t stand not knowing if there were cancer cells there or not. I live on a knife edge with my husband anyway.Thankfully all the 16 nodes the surgeon removed were clear so I had radiotherapy which I finished about 6 weeks ago and Letrazole to take for 10 years.I have had fantastic treatment from my surgeon and all the breastcare team but now I am through all the treatment I have begun to be very anxious again and very down. I am starting the Moving Forward course in the hospital on Thursday 6th October which I know is run by Breast Cancer Care and I am so greatful for the chance to take part.I feel that I am expected to go back to how I was before but I am not the same and never will be. I still can’t believe that I have had breast cancer.I know I have but my mind is still having difficulty accepting it. In the middle of my radiotherapy I got admitted to hospital with an infection under my arm where the axilla is. I needed another op and 8 days in hospital to get rid of it. I now seem to be treading water. Totally relieved and so greatful that I am through the treatment but already anxious about my mammogram next May and feeling that I am not me anymore. Sorry to waffle on but I think you are the only people that can understand my fears and sometimes terror. I like to read all your posts on here and I do find it comforting. Post cancer is a very fightening and lonely place, especially in the dark,early hours of the morning when everyone is asleep and your thoughts run away with you. Thanks for listening to me, I feel I know some of you anyway after reading the posts for so long.