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Feel so alone

39 REPLIES 39
jcon130
Member

Re: Feel so alone

Hi beryl 

thanks I've checked the different brands but all seem to have given me bad side effects. But thanks again 

Janet.xxx 

Matty2
Member

Re: Feel so alone

I - not on purpose -was given a different brand of Anastrozole by the pharmacy. Contacted GP and he said give them a try - great - hot flushes are a lot less severe, the awful pains and long bone ache I was getting has stopped. Yes my ankles and wrists ache but it is all far more tolerable.

Why not try a different brand to see.

I have arhtrtis so am already on gabapentin, have been for about 3 years so I know anything else I suffered was the Anasrtozole

Spoke to my BCN about the difference today, she said make sure I note down and ask for the brand that was OK for me - people do respond differently to them. the aching wrists and ankles is a common effect of it not what was happening before.

beryl

jcon130
Member

Re: Feel so alone

Hi Dragonbunny

 

hope the fingers in ears work, so  sorry to hear about your greedy ex, i like the idea you will be free of him,lol  my husband will retire in July  this year,married 35 years, could  be divorce or murder if he doesn't get a part time job, been used to him being away since we met, only  joking love him really.

my gp put me on a drug called gabapentin for hot flushes, then i went to the arthritis doctor and he increased the dose for my hip pain, my gp has increased  it again for the joint  pain, i'm not coping at night at all waking up lots. I think  the  gabapentin is a similar drug hope it works  for you.

I am trying  not to start tramadol if I can help it. 

 

 everything will come right in the end for you. They say everything happens for a reason. Hope you feel better soon.

 

speak to you soon 

 

Hugs Janet.xxx 

 

 

dragonbunny
Member

Re: Feel so alone

Hi Janet

Had to laugh. I'm defo trying the fingers in ears startegy! Love it.

Went to GP and he referred me for a liver function blood test. Said it would take a week for results but it takes a week to get the test done so it will be 2 weeks. Hate the waiting.... I think this is one of the worst bits of treatments. He prescribed amitryptiline as he said the pain may be nueropathy in my abdomen from the chemo.Thus, instead of waking up at 4, 5 or 6qam with mind doing overtime at least I am sleeping to about 7am.

Went to a solicitor yesterday and was told husband will get half of everything. I took early retirement due to being ill and he will get about a third of my income. Hoping my liver test is OK because I think I need to get a job.  Will need to maintain my sense of humour. At least I will be free of him.

Thanks for cheering me up!

x

 

jcon130
Member

Re: Feel so alone

Hi Dragonbunny 

thanks  for the reply,  so sorry to hear your ex is being a pain, get on to your solicitor  or the police, you really  don't need anymore stress, so sorry for my rant, just had bother with my eldest daughter but I had decided nothing would get me stressed so I let it go over my head.   Life is to short to let the buggers get you down.  I was thinking  of  a tv programme the other day where the girl puts her fingers  in her ears and sings la la la la to blank out the noise, i now do this in my head it works a treat.

about the the letrozole, had a few tummy pains but i don't know if it is the letrozole.  Joints still agony but trying to go on gentle walks.

i am not sleeping very how about you, hence the time I'm writing this.

Hope you feel better soon

 

good night gentle hugs

Janet xxx 

dragonbunny
Member

Re: Feel so alone

Hi Janet

Sorry for delay in  replying. Thank you so much for your kind thoughts.

The only way to find out if Letrozole is causing the side effects is to come off it but I will try to persevere. It is hr abdominal pain which also gets me down because I don't know what it is and if it anything cancer related. Seeing GP on Fri to discuss...

On top of this my ex is being a pain   (verbal abuse) - I am limiting contact as much as possible as I know stress is not good. I am going on a mindfulness day soon so looking forward to that as it always helps.

Hope you are OK

jcon130
Member

Re: Feel so alone

Hi sandra 

your very welcome. Hope you have a lovely time 

hugs Janet.xxx 

jcon130
Member

Re: Feel so alone

Hi dragonbunny 

 

so sorry your having such an awful time, thinking of you. please feel free to message me at any time.

i hope things get better soon . gentle hugs hun 

janet xxx 

san1952
Member

Re: Feel so alone

thanks for letting me know about the cheaper cream I`ll see if I can find any.Pleased it is helping it seems to work for me.My mouth still sore but I have different anti sickness tabs and they are working.hopeing to get away next weekend to see our son and baby grandaughter as it should be my good time before 2nd chemo on 4th feb.hugs Sandra

dragonbunny
Member

Re: Feel so alone

Hi Janet

Moan away -  please don't apologise. Share it amongst friends! I am in pain most days and keep it bottled in mostly. It is good to have somewhere to let it out.

Currently I am having a bout of diverticular pain - never had it until 5th chemo. Had scans etc - my main worry though that the cancer had spread to liver/bones etc so relieved to be told it wasn't this. It is the worry which affects me most. I have started tai chi and have acupuncture (on NHS thank goodness) to help with hip pain but still worry re any aches and pains.  When it was mentioned that I might need Letrozole for 10 yrs it made my heart sink but I am taking it year by year - 2 down 3 to go. I am going through a divorce currently which is alos making me feel vulnerable because I don't know if I have to seel the house, how much of my pension I can keep etc.

OK - moan over - thanks for reading! Hope your bones are healing well and visit to fracture clinic is helpful.

Take care X

 

jcon130
Member

Re: Feel so alone

Hi dragonbunny 

 

sorry for all the moaning, i feel a bit better, i can't put any weight on my wrists yet but i go back to the fracture clinic early February, 

I am going to persevere with the side effects of the letrozole until September when  i have my annual mammogram.  The lymphedema nurse is putting a request on my file to see my consultant rather than  a registrar or junior doctor to discuss my options.

I think the diagnosis  of osteoarthritis on top of everything else was the last straw.

How are you hope you are keeping well.

 

hugs Janet.xxx 

jcon130
Member

Re: Feel so alone

Hi sandra 

thanks for the reply, while i was waiting for gel to come i went to my local co op pharmacy,  the gel should have been £9.78 but it was on offer for £4.87, i'm not sure if this is all co op pharmacies just thought i would let you know.  I have tried the gel and i have had some relief so onward and upwards i hope.  Can i just say thank you again.  Hope you are getting on alright how is your treatment  going well i hope. 

 

Hugs janet  xxx

dragonbunny
Member

Re: Feel so alone

Hi Janet

Thanks for the update. Sorry you are in pain - my mother broke both her wrists and it was painful band made life so difficult for months.Hope you can get your hip sorted before too long.

 I find a hot bath some mornings helps but not sure if this would suit everyone.  Some ladies believe that the brand of letrozole makes a difference to the severity of side effects - trouble is it varies from person to person so you would need to monitor it over many months.I have heard that Femara is better in terms of SE. Not sure I have noticed re brands and haven't had femara myself - it is more expensive so less commonly prescribed.

 

x

san1952
Member

Re: Feel so alone

janet I take the pain killers I`m prescribed use the cream and I`ve found that walking around our village with a stick daily helps.If your still in bad pain go back to your gp and see what he can give you to help there are many different pain killers to try a different one may make your life better.Once I`ve got my bc sorted then my orthopedic consultant will do my first hip replacement.hope that helps hugs Sandra

jcon130
Member

Re: Feel so alone

Hi sandra

thank you  for taking the time to reply.

how do you cope at all with the osteoarthritis, i am constantly in pain and trying not to moan, but sometimes its doable other times its excruciating.

i am going on amazon to look for the gel you suggested.

hope you are ok

hugs janet xxx 

 

san1952
Member

Re: Feel so alone

jcon I`ve got the same as you in both hips was going to have new lt hip when bc was found on mammergram so I`ve put it on hold until bc treatment has finished.walking stick has helped and I take ibrufen and co codamol for pain also found a cream on amazon that I use called pernaton gel hope that helps hugs Sandra

jcon130
Member

Re: Feel so alone

Hi dragonbunny 

Got the results of my Mri  scan apparently i now have osteoarthritis, on top of everything else . Apparently its is not bad enough to operate as yet, 

he advised that i take painkillers ie codeine and paracetamol, and if the hip gives way as it did in November and i broke both my wrists, i could maybe   start using a walking stick. 

 

well that's  the conclusion just put up with the pain.  I asked could it be to do with the letrozole but he just said to speak to the bcn or consultant. So not really of any help.  Sorry its not very helpful.

 

on Friday  i see the lymphoadema  nurse i will  ask her about the constant joint pain and let you know what advice she gives me.

 

hope you feel better soon 

 

Hugs janet xxx

dragonbunny
Member

Re: Feel so alone

Hello

Janet - would you mind sharing the MRI results with us? I know these can take weeks to come through - I do hope they are OK.

I can realy identify with many of your experiences and feelings. I have done such a good job of re-assuring family that they think it is all done and dusted. My ex thinks I am cured. I wish we could say this.

 I have hip pain and use acupuncture to control it. Lucklily I have this via the NHS. I was diagnosed with diverticular disease after chemo. I had mainly right side pain so had ultra sound and CT scans about a year ago  (they checked my liver etc) - had no symtoms prior to chemo though I know it is a condition present for years with no symptoms. Cancer made me think hooray - diverticular disease - better than spread. I have been in pain for over 3 weeks this time - on right side. My GP prescribed anti-spasmodics and said to return in a month if still in pain. Like some of you say I am obviously worried. It is the fear of spread that I find the worst. This is casts a dark shadow over me. I do a good job of beng as positive as possible but I find I am waking up every morning at about 5 and am exhausted. I am also on Letrozole so it is hard to know what are side effects and what needs more investigation. The physical and emotional are so closely related but it is the emotional side which really gets to me. 

All the best all x

jcon130
Member

Re: Feel so alone

Well said just bee

same thing here  for me with the letrozole,   i am so confused, i am in agony with my hip and as you have said we don't know whether it is the letrozole, secondaries or arthritis, which i have just had a mri scan for. Oh well just  try and keep calm you have got this far, thinking of you.  Hope you  feel better, if that's  the word.lol.

hugs janet x

JustBee
Member

Re: Feel so alone

I hope you realise now that you're not and a lot of women feel just as lost and unsure of the way ahead. I'm on here tonight after having surgery chemo and radiation therapy two years ago. I'm on letrozole and often lie awake wondering whether is is joint pain from letrozole or bone mets keeping me awake. Life changes for us but others want us to be the same as we were. I'd like to be the laid back old me of two years ago but my reserves of patience have gone for now and I'm certainly less tolerant of some things and more aware of my own mortality. I know we should be happy to have got this far but it is a scary journey and we can't wish it away like others would like us too.
fifi_2002
Member

Re: Feel so alone

Hi Jules, poor you I know how you feel. My family were great when I went through treatment but couldn't understand the worry and depression after the hospital treatment had finished. I kept in touch with ladies in hospital at the same time as me and we phoned each other when we felt low and they understood how I felt. I also went to a fabulous breast cancer support group in Cardiff which is so supportive. They also have books you can borrow which can be helpful. They have talks about depression, fatigue and lots of other things which are useful and it's a good place to chat to others over a cup of tea which is really therapeutic. I am sure there will be a group near you, your breast nurse would advise you. I am sure all groups would be as welcoming and supportive. Take care and take it step by step Fiona
Jules1064
Member

Re: Feel so alone

OMG helenrose your scenario is exactly the same as mine. When I felt so ill during chemo I dreamt of Christmas and happy times. I new the New Year was going to be difficult as I reflected on one hell of a year. My daughter and hubby have been fantastic all the way through so it was such a shock to get the response I got - almost word for word what your sister said to you. It is so true. It does change you. I am a million times more emotional than before. I am so glad you ladies are here
jcon130
Member

Re: Feel so alone

 

Hi jules, i know exactly how your feeling.  My friend is a godsend, she listens and gives me an hug when i need it.

in 2013 i was  diagnosed  with a small grade 3 invasive cancer, i had a lumpectomy and thought great, get on with radiotherapy done and dusted.  No not that easy, had to have re excision for dcis on the edge of the  clear margin i had from the invasive cancer,   i went from being really positive to a gibbering wreck.

my husband and daughter were over the moòn that the cancer was gone?  Tried to explain to them how low i felt but to no avail.

Now at 4 in the morning, when i am still awake with pain in my joints and worrying if the pain is the side effects of letrozole or secondaries in my bones, juggling with should i go to my gp or ring breast care nurse. My point is that the ladies on this site have been so helpful, do not know what i would have done without them, just try and stay positive it does get a little easier with time.

 

 

Hugs Janet.xxx 

drdspg
Member

Re: Feel so alone

Hi Jules, you ask what is wrong with you- what is wrong with you is that you are a normal human being facing a life threatening disease and awful treatment. It's an emotional tsunami. Did you see what the coasts of South East Asia looked like after the tsunami hit. How long have they taken to be restored and rebuilt and can you undo the death and destruction ? Even when it is all restored, it won't be exactly the same. Physically it will look different and you can't take away from people's hearts and minds the fear of another one. Once it happens , people will always fear at some level that it might happen again. Let your family know that you intend to " pull your self together" but for Cancer this process takes months and years. Cancer changes you and adjusting to this is hard. I was diagnosed almost 3 years ago and am awaiting reconstruction therapy, I wouldn't say that I am " pulled together" but I am recovering. I had leukaemia in my teens and I can't say I have ever really got over that. Of course life goes on and it contains much happiness and I can access that more easily now..
I have found mindfulness tremendously helpful and there are specific mindfulness based therapies for cancer. I wonder sometimes at people who say that since their Cancer diagnosis they are changed and relish everyday ... I wish I felt like that too but I suspect that's therarity not the norm.
Anyway, I do hope you are able to help your family understand a bit more. Macmillan also do some booklets. Would your oncologist or GP be willing to speak to members of your family? All the best

HelenRose
Member

Re: Feel so alone

Hi Jules Poor you ...They need to walk a mile in your shoes to know how it feels. I was out with my sister (who has been a wonderful support) before Xmas on our annual Xmas few drinks and a dance and walking back to station in the icy cold and all the Xmas lights I felt quite tearful ...I can remember thinking about things like these events in the dark days after my diagnosis in July and I felt so happy to just be there as i had worried I won't. Instead of giving me a big hug my sister was quite surly and said oh for God's sake you've got to put this behind you once and for all! They dont understand because it hasn't happened yo them. My husband telld people my cancer lump was tiny ...A little bit of cancer is cancer. The idea of making everyday matter and stopping to smell the roses is great in theory. If you feel down you have every right to be ...my doctor once told me you can't medicate for grief or sadness but in time it will improve and I think this is the same. It does get better but sadly we'll never be completely the same again. But that may not be a bad thing xx Just know others know exactly how you feel ......and tell your family (in your mind of course!) to F@#k off as they haven't got a clue xx
melykins
Member

Re: Feel so alone

Jules 1064 it is normal to feel the way you do, many of us here have tread the same path. It is hard for others to understand. They want to see the person they knew prior to cancer. But as you and many on here know once touched with cancer you can never be that same person again. I think we all go through the rollercoaster ride of emotions. But time is a good healer. I finished my radiotherapy 19 November and l would say it is the easiest part, so please do not worry about that. One sure for sure though your not alone. You got us here to talk to. Little steps ok
Amalfi
Member

Re: Feel so alone

I too was plunged into a black depression after lumpectomy and chemo and going onto tamoxifen. My onc said this happens to many women and to go to my gp for anti depressants. I got them but was sure I could get better on my own. A lovely volunteer who drove me to my radiotherapy appointments could see how down I was and said to get anti depressants and not to feel bad about it. He had needed them in the past. I went home and started taking them. The first 3 weeks were awful, raised my anxiety levels through the roof. But then I started feeling normal again. I took them for six months and have been fine since.if I thought I was getting depressed again I wouldn't hesitate to take them
Jules1064
Member

Re: Feel so alone

Thanks everyone. It's nice to know I am normal after all. I have gone down with a virus now so I don't suppose that has helped. I am so grateful to be alive but I do feel broken physically and mentally. I keep a brave face on 90% of the time but that is exhausting too as well as the not sleeping hence posting on here at 2 in the morning. I will pull myself up by the boot straps but it's nice to know I can have a wobble on here if not with my family.

Here's to a happy, healthy and strong new year
Jules x
daiseykins
Member

Re: Feel so alone

Hi jules,I can sympathize with you I too had a lumpectomy in july then radiotherapy in October.won't go into every detail but I have had an horrendous time the past 4months.infection after infection,never been away from the doctors.your right peaple think because you have finished your chemo and radiotherapy life goes on like it did before.every individual is different,I have been at rock bottom at times then I pinch myself and say come on get a grip your alive,I know I have come a long way I have good days and bad days,who doesn't.I started my hormone letrozole 4weeks ago,I know there are side affects but each morning I take this little tablet I just think of the advantages of taking it.never feel alone jules we are all in the same boat.wishing you all the best for the future x

Jenji
Member

Re: Feel so alone

Hi Jules

Wow what a year you have had and no wonder you are feeling like you are, as everyone else is saying.  Also, you still have another hurdle to face in the radiotherapy.  Both the book and article mentioned helped me alot when I thought I was being stupid or pathetic after my treatment...I realised I was just behaving normally for what I had been through.

My family found it hard to understand and still do. 

So, in answer to your question-there is nothing wrong with you...feeling sad and low is as normal as everything else...we are all so different and as has been said we can only help each other on our different journeys.

Love and hugs

Jenjix

Jo_BCC
Member

Re: Feel so alone

Hi Caz0860

 

Welcome to the BCC discussion forums, you've found the right place for some good, honest support from the many informed users of this site.

 

It's quite natural to feel as you do, but this time of year I am sure makes things worse.  I am sure your fellow forum users will be along soon to support you, they're  a great bunch of ladies.  Unfortunately today our helpline is closed but re opens again tomorrow morning at 9am if you need to talk to someone in confidence and away from family and friends.  Do give them a call they're here to help.  0808 800 6000

 

Take care,

Jo, Moderator

Maryland
Member

Re: Feel so alone

Hi Jules.....as everyone has said, a very natural reaction to the end of active treatment....quite a long article, but well worth a read to reassure yourself that you are not alone and how you are feeling is valid.....

http://www.cancercounselling.org.uk/Peter%20Harvey%20-%20After%20the%20Treatment%20Finishes%20then%2...

All the very best and hope that 2015 is kind to you........xx

Caz0860
Member

Re: Feel so alone

Jules - I feel just the same, just spent the last 15mins crying my eyes out and i have no idea why. Ive only had a lumpectomy but I think its the tamoxifen with me as now going through the menopause again but its worse than the first time im sure. I feel sick, every bone in my body aches, i have no energy. I feel worse now than the first week after surgery. I go back to the hospital on Monday and will have to speak to someone cause i cant function like this. I start radiotherapy in a few weeks time. I should be so lucky i was caught early and that it is gone but I dont at the moment

Lucy_BCC
Member

Re: Feel so alone

Dear Jules
I am sorry to read you are feling so low, along with the support here our helpliners are back tomorrow 9-5 so please feel free to call and talk things through as it may help a little

0808 800 6000 weekdays 9-5 and Sat 10-2

Take care
Lucy BCC

keepmumsane
Member

Re: Feel so alone

Hi jules, I just read an article on this today, accidently down loaded it..really good. 

Its by peter harvey, , called after the treatment on www.cancercounselling.org.uk 

Im not as far along as, but understand a little of how you feel.  Its your experience that counts, they havent gone through it, they're your support crew. Some days are so tough for no obvious reason.  I dont think anything is wrong with you. Youve been through the wringer no wonder you've run out of steam

Xxx much love, be kind to yourself you've earned it.

Sandie

GB
Member

Re: Feel so alone

Hi Jules, I think those who haven't had this illness think it's a purely physical thing so once you've been treated you 'get better'.  But for me that hasn't been how it works, and the psychological effects stay around, getting easier over time as you regain confidence.  And then something happens (in my case my first post-op mammogram is due in 2 weeks) and off we go on the rollercoaster again!

 

I found the book 'Emotional Support though Breast Cancer' by Cordelia Galgut very useful to read, and gave it to my partner who was also struggling with why I wasn't 'getting back to normal' once my treatment ended.  He found it gave him a better understanding and we've since passed it on to a member of his family going through the same thing.  So your daughter and husband might gain from reading it too. I think those closest too us have been so scared by what's happened that they want 'normality' to return but my view is you end up at a new normal but not at the place you were before you are diagnosed.

 

So I think what you're feeing is totally understandable and things will settle down over time but it's early days and you shouldn't feel ashamed for having all these feelings, it's just what happens. Gx

Joolz2000
Member

Re: Feel so alone

Oh Jules, my nurse used to say that we are all on a journey and every journey is unique. You are still on your journey and your family need to understand that. The radiotherapy should be a doddle after the chemo but mentally it all takes its toll. You are allowed to cry and feel sad. It really is a roller coaster. Be kind to yourself. Sending you hugs and strength for the rads. Joolz x
Jules1064
Member

Re: Feel so alone

Thank you Mary. Feel so ashamed that I feel like this. Another night wide awake.
Hugs to you too.

Jules x
mary32
Member

Re: Feel so alone

Hi Jules

 

You are not alone and you have the right to feel depressed, you have gone through so much and still a bit more to go.

 

Hugs to you on the start of a new year.

 

Mary

Jules1064
Member

Feel so alone

hello I really hope someone can help. I have had a lumpectomy and lymph nodes out in April, followed by chemo and a mastectomy in November. Started on tamoxifen about 2 weeks ago and start radiotherapy in jan. My family and friends think I should be dancing from the ceiling because I have got through Breast cancer but I am not. I feel so low and seem to spend hours crying which is ridiculous. Was on anti depressants before starting tamoxifen but had to come off them as they interacted with the tamoxifen. Got some new ones today as I felt so bad. I have ended up having a major row with my daughter because she thinks I should pull myself together. My husband thinks the same. So why can't i? I should be grateful to be alive which I am but the enormity of it all has knocked me for six. I thought I would be so happy and vowed when I was in the throws of chemo never to be sad again but I feel worse than ever. What is wrong with me?