Everyone is too busy.

I am about to start a Moving Forward Group after Breast Cancer on 1 October.  I had a bit of a fight to get any sort of counselling.  Apart from my husband (who has been wonderful) and my son who lives away from home (but I don't like to worry him) - no-one else has supported me.  I have an older sister, cousins and couple of friends (although my best friend died 20 years ago now) and a few acquaintenaces.  However, I have found that apart from my husband and son, no-one wants me to talk about it.  Its as if it never happened to my sister and after nearly a year since my diagnosis she has not bothered to come and see me.  It was always up to me (her younger sister) to see her, but I am taking a stance on not running around after her anymore.  In a couple of weeks she is travelling half-way to where I live for a meeting but will not continue her journey to see me even though I have suggested it.  When I ring my relatives, I talk about them.  They never ask about me.  An old friend of mine never mentioned it at all when I phoned him.  All he could say was "well you're all right now".  As if I'd had a bout of flu. One old friend invited me to stay with her for a little holiday when I'd finished my treatment only to find that when I got there I was treated as a nuisance and she eventually attacked me verbally and left me on my own (in a foreign country).  I have been genuinely shocked because whenever someone close to me or someone I considered a friend was going through a difficult time, I was there to help them.  I suppose they are used to that and maybe think that I am so organised that I don't need support myself - I don't know.  You do have to be strong, positive and just get on with it.  Laugh and the World laughs with you; cry and you cry alone - seems to be the order.

  • Hi Dottess,

    I really liked your last line- I think it sums up things pretty well.

    I have thought a lot about the things you write about in your post. Personally, for the vast majority of people, I don’t think it is meanness which stops them engaging, i think it is fear and self-preservation. I think as humans we like to think of ourselves as indestructible and we don’t like reminders that we are not. Also, a lot of people don’t deal with uncomfortable situations very well and most people have such full lives that there is no time left for anything or anyone else. 

    You should push to get counselling though. I got it pretty quickly but things were quite desperate for me. It is great, a real opportunity to offload and work through things. But even so, the answer is, and can only ever be, within you - so to some extent, I think we all do cry alone, but we are all crying alone together, if that makes sense?

    I am hoping you find some emotional improvements soon. In my experience, everything is temporary and time is a great healer.

    All the best,

    Greg

  • Greg

    Thanks for responding.  I'm not really that bad but have days when I am - which you will understand - and I feel particularly sensitive today.  I think it was sparked reading that Rachel Bland (40) has days to live with terminal breast cancer.  

    The only counselling session I had was when I went for a sessions about lymphoedema.  It was a group discussion and one woman in particular really got on the wrong side of everyone because she was so childish.  I hope my NHS Group Therapy isn't like this although I know that they won't fork out for one-to-one.

    I read your profile and you were so young.  Keep going onwards and upwards.

  • Hi Dottess,

    I know what you mean about Rachel Bland. She is the same age as me so I found it very poignant. It was the perceived end of hope which caused my emotional problems in the first place, and I think we probably all slip back to that dark place when something as sad, and potentially unexpected, as that comes along.

    I have never done group therapy before. I can see that it would work, but I can also see its limitations. I hope you find it really useful and helpful in sorting things out for you. I think the health services are beginning to catch on to the idea that cancer and it’s treatment can leave many more mental scars once the physical bits are dealt with. I’m hopeful it will lead to increased funding in the future.

    All the best,

    Greg

  • Dear Greg

    Another little child without a mother.  How can someone so young, beautiful and healthy-looking die? Need to go out into the sunshine.

    Thanks responding.

    Irene (alias Dottess)

  • Hello, I was drawn to click on the Macmillan site and as soon as I saw this thread knew the reason why.

    Firstly all your posts brought a lump to my throat, and the recent news about the BBC presenter amplified everything.  I wish everyone who reads this and is taking part on this discussion finds bright light at the end of their tunnel.  

    I echo the words written above  about how family might treat us, brother never bothered to get in touch to ask how the surgery went, just a wall of silence,my o/h has been 'distant' as in only replying if I bring the subject up, to be fair he is good mind with doing heavy chores around the home as I cannot do that anymore.  No family or relations nearby, nearest is a 240 round mile trip away.  Sister rings (not seen for years) then kind of starts talking about her problems!   Like many have mentioned, they probably think its like the 'flu and will get better after days or weeks, but as we know it doesn't.   Mentally am exhausted, there is no mental or psych support by experienced people in my area (north-east).  I think its a great idea about the Moving On.  Nothing in this area though, I was offered after seeing my GP in desperation last week after recent self harming is CBT and there's a waiting list for that, have tried it before years ago for something unrelated long before C reared its ugly head, I know some do benefit, but booby c is not suitable for a ticky box form to be completed every session for 6 weeks!    

    Must quickly add how truly grateful I am for the surgical skills team and the r/t staff, they were wonderful, attended QE Gatreshead and Freeman in Newcastle.

    I just feel so alone and withdrawn, do I ring the help line tomorrow or can someone point me in the right direction to get some much needed counselling, is it available for cancer patients on the NHS or do we have to go private?

    I feel better now for sharing, apologies for sounding down, am usually bright and cheerful and always on the lookout to help others but with this that has happened, so called friends have melted away so my Xmas card list has suddenly got that much shorter. 

    Hey ho am trying to stay positive and I send uplifting bright thoughts to you all. 

  • Shieldscannylass - Can you get to a Maggie's Centre? Their website shows one at the Freeman hospital.

  • Hi Maria,

    So sorry to read your post, although I’m glad that you found it and found some comfort in the thread. I hope it helps to highlight that what you are feeling is very normal and a hell of a lot of people with cancer have been, or are, where you are now.

    If you feel you need it, you should definitely ring the helpline. I have done so in the past and it has really helped me so I hope you’ll find the same.

    Counselling is definitely available on the NHS, but unfortunately resources are scarce and they have to make a call about who gets it. Quite how they do that I do not know. I was seen by a psychiatrist and psychologist within 24 hours, but I had had an episode and was in a very bad place mentally. To be honest, I didn’t ask for it, they kind of thrust it upon me. And it was a literal life-saver. But I don’t really know how you ask for it. Then there are charities like Penny Brown that offer it - not sure if they are in the North East?

    My main piece of advice is that you know best where you are at, and please, please don’t try and brush things under the carpet. Feeling alone and withdrawn can lead to more serious things quite quickly in my experience so please ask for what you need. I think being blunt and direct about how you feel is always best.

    And as to your kind wishes, thank you very much, and just to say that I did find bright light at the end of the tunnel. Even when it was pitch black all around and I was convinced the end of the tunnel didn’t exist, it was there, waiting. And I’m sure you’ll find it too, in time.

    All the best,

    Greg

  • I was just thinking the same about my Christmas Card list.  Why go to all the bother every year when people really do not care.  This is a hard fact of life I think we have to learn.  Just concentrate on the people that matter.  I am do to start a Moving Forward Course on 1 October but am not getting too excited.  I'm sorry to sound so negative but the the "after-care" I have had from my GP, the surgery and the Breast "Care" nurses has been very poor indeed. The most important people were the surgeon and radiologist (as you said).  Really no-one else mattered.  They saved your life.

    Maria, you have got to go out (albeit alone) and try to enjoy yourself and forget about "C".  Walk around the shops; have a coffee, go to the cinema/theatre.  Its a diversion.

    I know the hurt you feel when relatives and so-called friends don't care.  I ended a telephone call I had made to my older sister (by 10 years) yesterday because she was starting to tear lumps out of me.  As I've got older and having this terrible scare, I've come to the conclusion that in my family "tearing lumps out of each other" was a blood sport and was actually encouraged.  So, I've made a vow that as soon as she does that, I end the conversation.

    Continue to write on the forum and vent your feelings.  We will all connect and respond.

    I hope you have a better day tomorrow.

    Irene

  • I like the way you are taking control, Irene. Remember what Michelle Obama said 'When they go low, you go high'. You've done well and you can have a clear conscience.

    Enjoy your course

    Lots if love 

    Alison xxx 

  • Hi Maria,

    It's lovely to have you join this forum. You will always have a sympathetic ear here. You've had some good advice here, and I think you should pick up the phone tomorrow to the helpline, as they are very nice. I was thinking, you have only joined this group, but remember you can join other groups too. There is the 'life after cancer' group, and the breast cancer group. Even if your cancer has gone you can still join the group it belonged to. I am on the womb cancer group, and the majority on there are cured of cancer (I'm not) but the are lovely, supportive people who are my buddies on here. If you do that, you will make friends, too. There is even an Awake thread on the breast cancer group for those who are, guess what, Awake during the night! 

    So spread yourself out a bit and talk to people who totally understand where you are coming from. As do the people on this forum, I hasten to add!!

    Lots of love 

    Alison xxx 

  • I didn't know that quote from Michelle Obama but will be guided by it. Thanks!  I will report back on the Course, of course!!

    Thanks for replying.

    Irene

  • Hi LittleRunner, nice to read your reply.  Yes, I did pop in there for a short while on a R/t appt. day when I got transport there and back home, it was nice and welcoming.  They said I'd have to book in advance for counselling as its heavily used but tbh with no car or family support, I just shied off committing to a day as get panic attacks on 3 changes of public transport and taxis cost a fortune!   Didnt want to let them down if that happened.   Am hoping something will happen nearer me.   Feeling a wee bit calmer today, did a short walk, its a fresh windy day up here.  :)

  • Greg, thank you so much for your heartwarming reply, I feel like a bit of weight has been lifted off my shoulders.

    I take on board what you wrote, seems like I'm going to have to be loads more assertive to get what I feel is best. 

    Strange how things happen, back what seems like 100 years ago (which in reality is only 7 months)  I trained to do Advocacy as part of counselling training as that is what I felt I'd like to do, a change of work direction where I can help others, now following pesky c (which is healing slowly Slight smile)  serious side effects of the meds am on, that confidence and speaking up has disappeared.   Now I am the one seeking help, oh the irony.   Your words made my day brighter and as many do, finding strong naughty swear words to let off steam, and tell it in no uncertain terms,  politely put, go away and never return.   Hopefully.    

    I'll look up Penny Brown and see if there is one in this region.  I was offered a complementary therapy, Indian head massage as its supposed to ease stress, but when they found out I was on the w/l for CBT they told me it would be incompatible.  

    I'm glad your found that light at the end of the tunnel, that is good, and long may it continue.

    My next step when the meds brain mist lifts for clarity is to do battle in the nicest way with my GPs surgery, they are refusing to let me have the major brand which has less side effects, on costs grounds, I did some long and often frustratingly research and yay, Asda pharmacy said they wiIl allow me to have Pfizer for the same cost as the generic one! 

    Hope your day and for others who read this, goes ok as it can.   

  • Thank you Irene, it brought a lump to my throat reading your reply and appreciate your taking the trouble to do that. 

    Oh no, fancy you having the same problems as me, your sister and mine must have gone to the same 'charm school'  t.i.c.   One second she can be as sweet as candy then comes out with such thoughtless words.  It's all so clear now with age and wisdom that she got that from my mother who was an abuser to me, strange how things done years ago suddenly seem crystal clear today, what phisses me off is they surely must know how unkind and totally unacceptable their behaviour is yet still go ahead and do it!   Enough said  .....   really hope things get better for you and that today has gone ok too  Slight smile

    It's a windy day on the north east coast but mild, live about a mile inland, did a short walk for the fresh air and exercise and the junior seagulls are out on their own now looking for food, as big as the parents but still have that mottled brown cream plumage.

    I'll keep in touch.

  • Thank you Alison for your lovely supportive reply.

    Oh I hope yours will be cured.  Quickly or whenever.  Thinking of you  -  hugs.

    I will look at the other groups you mentioned too.  Time to do that, as have shared this with not many, I have yet to cry from the initial diagnosis and all that has happened since, maybe this is what is causing so many emotional issues, and being an extra sensitive person anyway, its kind of like a volcano waiting to explode if that makes sense, but will do the phone call.  I've only just got onto the internet using my laptop today and caught up on here.

    Will definitely stay in this group.Bouquet

  • Hi, cancer is one of those strange things, my partner Mimi was dx with stage 4 endometrial cancer in late 2013 (only given 6 months) and had beaten the odds and been in remission till a few weeks ago.(Its now in her liver). 

    Friends that we thought we were close to, distanced themselves from us, but other people who we never felt we could never rely on came forward, her brother said "I'm too busy to cope with this right now" !

    You will find strength in unusual places, share everything with your partner, never hold back we are stronger than you think, we often feel helpless.

    Good luck

    Gingercat 

  • I've just come back from a long walk by the sea.  So hope its therapeutic!  My sister is never as sweet as candy (she saves that for everyone else!) but for some sad reason I want her to love me.  Our mother died, aged 45, when I was 16 and she was 26 (cancer; quick; and a shock) but she never rose to the occasion.  I think it was because she was the only child for 10 years and then I came along and changed everything.  I always thought it might have been better if I'd be a boy!  The jealousy/resentment has never gone for her and I really think (although it sounds incredible) that she cannot bear the fact that I've had "c" and she doesn't want me to have any attention. After my second op. in 3 weeks, I took the dressing off and was shocked as my boob had changed shape and size (which hadn't happened from the first op.)  When I told her of the shock of seeing this in the mirror, all she could say was "well, you'll have to come to terms with that".

    Our mother was frightening and I often wonder if she had lived what sort of a relationship we would have had.  I still feel very lonely without her as I've gone through all the important stages in my life without her, and as one counsellor I saw explained this is "unfinished business". If you've had a good relationship with someone and they die then you can get over it eventually, but when you have had a bad relationship you're in some sort of limbo.

    My "C" diagnosis was a complete shock to me.  I thought I'd escaped as many of my close relatives had died of it before the age of 50.  I cannot say the word.  Its like having satan inside you.  

    Let's hope our walk in the oxygen has done us good!

    Irene

  • Good Luck to you too and Mimi.  She got over it once; she can do it again!

    Thanks for your post.

    Love, Irene

  • Gingercat  -   oh my heart goes out to you and your Mimi and sincerely hope that something can be done and she will make a recovery.   T y for sharing that poignant post. 

    Like you said about finding strength in unusal places  ......   well I knew I had to get out of the (small) flat get fresh air s took a small bag of things down to the Marie Curie charity shop down the town.   To cut a long story short I stopped to get my breath back as post c energy levels plus low thyroid all contribute,  stopped at a jewellers shop to window gaze for a few minutes, a woman was doing this too and I noticed the distinctive headscarf as in possibly Chemo, so we chatted and yes that was what hers was, wished each other good luck and went our separate ways.  That moment was a surprise and uplifting  :)   almost guided some might say?

    This journey, the rollercoaster, is just that, only we really have no idea when the ride will end!

    Warmest wishes to you both.  

  • Hello Dottess, I hope you feel better after your sea walk. 

    When I got my shock diagnosis, after lots of strong language when no hospital staff were around the only way I could cope was to give the bleepy lump a name, think of it immediately as little c even if it wasn't, and like you, have never say the word in full at all unless it really needs to be said.     The analogy you used of satan is spot on. 

    I think you are amazing and this goes for all the others who are taking part in this topic as to come through the storm is nothing short of that.   Not to mention the ongoing mental stuff we have to put up with including any unwelcome comments or that great wall of silence! 

    Well the fresh air today sure helped lift the brain mist which is why am tapping on the keys as it comes back with no warning. 

    Warmest wishes.