Doing this on my own.

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I am based up in Edinburgh and I am finding breast cancer an increasingly isolating experience.  I don't have any family and I don't really have huge amounts of support.  I am finding people, after 4 months of chemotherapy are saying things like "can't wait till you are back to normal" or " gosh, you dont like ill - you look so well" (bearing in mind I have lost all my hair, eyelashes and eyebrows) or I just get a facebook message  which feels like they are just checking in but actually don't want to know.   If I am not well enough to 'go somewhere' then I just don't see anyone.  I know I am not alone, as a single person I have spoken to lots of women (mainly) who feel the same.  Please don't think I am whinging, I am not - there are some amazing people coming into my life but the interesting thing is that they are not friends but new people - but unfortunately they are not here.  I get no support from my local hospital, we have a helpline if you are experiencing acute side effects, the chemo ward is like a conveyor belt where you get a random nurse for each treatment who are fantastic, talented and professional women but completely overrun. Other than that, I don't get a cancer nurse or a 'consistent' person to speak to.  I am sharing this because I think sometimes all the adverts for cancer shows lots of friends and family but the reality for an increasing amount of people (at least in my experience) are coping with this on their own.  I have Stage 3 Breast Cancer, I am 47  and have just completed Stage 5 of my chemo.  I have a long way to go yet :).  I have good and bad days and I hope by sharing this - that those of you who don't have this 'network of support', go to appointments on your own,  feel a little bit better you are not alone and you can do this :) xxx

  • FormerMember
    FormerMember in reply to FormerMember

    Hi Bubbles1234, 

    Like you I feel an imposter as I too haven’t got a diagnosis but will be going to the breast clinic for more tests. 

    I stumbled on this little chat looking at something completely different lol but seems I’m meant to post on here. 

    X

  • FormerMember
    FormerMember in reply to FormerMember

    Hi MrsManvuko! You are definitely not an imposter - it's lovely to hear from you! It is such a scary time isn't it. I must admit I have been really stressed and upset this week. However, I have found this forum a great help and support. They have helped me to get things into perspective and, while I'm obviously still hoping for good news, I now feel a bit more able to cope with whatever happens.

    Do you have an appointment yet? What symptoms are you having? I have had pain in my right breast along with what my GP described as 'thickening'. I have an appointment on Tuesday for further tests I will keep my fingers crossed that everything turns out to be harmless for us both. Take care xx

  • FormerMember
    FormerMember in reply to FormerMember

    Hey Bubbles1234 thank you for replying :). So happy the group has been helpful for you. My husband is fab but sometimes you just need someone/a few people going through the same thing to go through it with you lol. 

    I do actually feel ok about it all, I do honestly feel it’s just a fatty lump and that my boobs are starting to sag haha. 


    I’ve ‘thought’ I’ve felt a little lump for a while now probably 8 months or so. But I just kept thinking ‘nah, it will be because I’m due on’ or ‘it’s more squishy than lumpy so it will be nothing’. Que me forgetting about it because my youngest boy (2 next week) suffers really badly with eczema and allergies and he’s had multiple doc appts and hospital admissions that I’ve not had time time think about me. Last week I was getting out of the bath and happened to look down and one of my boobs has lowered I now can’t see my nipple, I felt for the squishy lump and it was still there so I plucked up the courage and booked in at the docs. I saw her on Thursday and she said it feels like a cluster of lumps (which is why I deffo think it’s just a fatty lump) and wasn’t happy with the change of shape so has referred me to breast clinic. I will probably receive the letter on Monday. 


    My fingers are crossed too lovely. 

  • Hi HappygoLucky

    It must be amazing to walk out of Ward 1 knowing you 'made it'.  I hope you have treated yourself to something for achieving this - I do think we should do this.  I am going to go to the Ivy in Edinburgh with my friend as I am 'hoping' that next week is my final one.   Crossing my fingers :).  I smiled at the ironing - this is going to be my Saturday night - I AM SO EXCITING... !  Still, I will wear my halo with pride when I am finished.  I understand about next week so I will send you a friend request on Macmillan and we can tic tac and see how you are feeling.  Lovely you have a holiday planned -  I am hoping to attend a course in mid-March in London  - I had to abandon it in October as I got Neutropenia and had to return to Edinburgh to hospital :(.   I may be being unrealistic..but realistic is boring .   :). take care, thinking of you and don't forget to treat yourself :) xx  

  • Hello Bubbles 1234  


    Thank you for taking the time to write and I am so happy you are feeling a bit better about it all.  I think the difference with this forum, is that people have a depth of empathy because they are either in your position or have already been there.  They instinctively know how you feel and want to help so ... whilst I know you may not want to bother anyone - simply by posting your feelings or how you are doing - is helping someone else feel better or encourages them to post on this forum. Not to mention - helping yourself feel a little better.  My best for Tuesday and whilst we all hope for a positive outcome - there is support, loads of it to help you whatever the outcome xx  Definitely, coffee in Edinburgh when you are ready :)   

  • FormerMember
    FormerMember in reply to KMS70

    What a lot of lovely posts since i last popped in about move more.

    Seems there are now a few of us the north side of the forth! And of course those on the south side.

    Got my dates yesterday for starting RT over at the western. So will be travelling back and forth more so than  usual for most of Feb. 

    Those with appoints this week either for treatment or to find out whats what, good luck, i too found i got seen up at QMH within 2 weeks after going to GP, although i do know of a lady that did have a longer wait, must depend on your gps point of view to how urgent they feel it is.

    It is lovely to see that it really doesn't matter what your situation is, there are people here who can help you through.

  • FormerMember
    FormerMember in reply to FormerMember

    Hi ladies, I had my appointment yesterday & ive posted a little update on the original thread I started asking for advice but just wanted to add it here too for everyone I’ve been chatting to on this discussion.

    I was seen by a doctor & explained my symptoms were an initial sharp pain on one side which had turned into more general pains all over & while I can’t feel a distinct lump I have several lumpy areas that I am worried about - my GP described it as thickening. The doctor examined my very quickly & sent me for ultrasound. The doctor there scanned an area in the top right corner & said it looked fine. She then asked if I was happy she’d covered everything & I said not really as though the pain had started there I was now getting pain all over. She said that she couldn’t check anything else as that was the only area the doctor had requested. At this point they were going to discharge me but I asked to see the doctor again as I still had no explanation for the pain. He was really dismissive & said that they’d checked & I was fine & it was just hormonal changes. He also said that he’d examined me & I had no lumps. When I pointed out that I do have a lump (which is an old benign lump that was checked 15 years ago & was considered safe to leave) he looked a bit taken aback but still unconcerned. He then said if I wanted another ultrasound I’d have to come back as an outpatient another time which could take up to 6 weeks. It was clear he thought I was wasting his time by this point.

    I’m not sure if I’m being silly but I’m just not completely happy. When I came out I could have cried. I really don’t feel like it was investigated thoroughly & I don’t think I have a clear reason for the pain I’ve had. Everyone I speak to thinks I’m overreacting & should just accept the result but for my own peace of mind I’m not sure that I can. 

    decided yesterday to ask my GP to refer me privately for a second opinion. It will be a stretch financially but I think it’s something I need to do for my own sanity! If I left it as it is & later found a problem I’d be so angry with myself. I did consider asking for a second opinion via the NHS but I feel like I might have the same thing happen again & it could take a long time. 

    Thanks everyone again for your help & support xx

  • Hello Bubbles 

    Sorry for the delay in responding - chemo day.;)  I think definitely a 2nd opinion.  I  think anyone in the caring health profession should treat you with respect and compassion but it sometimes it does not happen.  I think you must request a 2nd opinion and if still not happy then consider private but honestly, I don't think private is always better. You just need to be in front of the right person that takes you seriously, and if there is nothing wrong (crossed fingers) they can reassure you with facts and evidence.  All you are asking for is a thorough diagnosis.  If they don't understand the root case of your pain then the diagnosis is incomplete or they have not taken the time to explain it to you properly.  Either way, go back, ask for a 2nd opinion - ignore other peoples opinion - they are not you and this is exclusively your health.

    Good luck, and thanks for keeping us all updated and please do let us know how you get on as your perseverance will inspire others to push for their own health a little more. 
  • Hello Everyone

    I thought I would give you an update.  Today, hopefully, is my last chemo.  It was the shortest ever 4 hours and I walked there and back.  I had this as an ambition and today I achieved it.  Sad little goal but it meant I could treat myself to a piece of cake. Tomorrow I am in for tests which is a little quick and as I have no consistent contact so I don't know why.  Interestingly, speaking to another chemo patient - also my age (under 50) she also has experienced no continuity, no breast cancer nurse and 'stand-ins' for Oncologist. We are all going to meet for coffee to be our own support but I really want to thank Macmillan and this wonderful group for being my source of information and support.   It really has made a difference and I recommended in Chemo today a lovely lady who lost her husband last year and a month later she was diagnosed with BR.  She is really interested in joining and I think would really benefit from the support.

    Ok, so I want to share this because some of you (not many of you I really do hope) may experience the same.  If you are like me and 'get on with it' because you really don't have any safety net not to - I have experienced quite a lot of emotional dumping from other people.  One came to see me last weekend and explained how it really helped her that I coped so well as she would find it just to difficult if I did not cope and was miserable.. if you are smiling - it made me smile too.  She has blocked a friend because she has also been diagnosed with BR and after texting her she felt her text back to her was a bit off so is not speaking to her. She mentioned to me that she has a mammogram this week ( she is over 50) and even though her doctor said she was fine after examination she has convinced herself she has BR cancer.  She then proceeded to tell me how terrified she was that she might have cancer and how awful would it would be.  I don't want to judge - she has a friend with her tomorrow (mammogram) and never asked once about my tests tomorrow.  I am sharing this because really, you might experience this too.  Whilst it would be easy to feel hurt, I let it go - congratulate myself for being strong because a positive mindset is everything and no matter how ill you are - looking on the bright side always makes a difference. I also feel much more positive when I am supporting the right people who appreciate it.  So, when you do encounter people like this do not forget, you are important and are deserving of self-nurturing - other peoples dramas and not yours and we are not there to rescue them.  Support people who need it not want it - there's a big difference.  It is fine to listen compassionately to other peoples dramas but prioritise yourself, don't get too involved and re-direct them to more deserving support.  I hope this strikes a chord and is helpful to some of you. Sometimes sharing stories helps us all to progress along this rollercoaster. 
  • FormerMember
    FormerMember

    Thank you for posting this.