Hello all,

It is amazing how your mind changes when you have this beast, I would not have spoken to a doctor ref the pain in my ear before being diagnosed but I knew something wasn't right and it was quite painful

A friend has been staying for a couple of days from Berlin and I felt all I kept saying was something was wrong and that I had a lump under my ear, her response was I can't feel anything and you look fine even though I had just had 5th line chemo.

We have been friends for 35 years and during this visit, I found her quite ignorant of the chemo side effects I was going through even though I have her the information. I found her saying things like oh give over that surely not, or I think some off this can be in the mind.

She flew back to Berlin last night and told her the lump and pain I had been experiencing was an infection of the Lymph node, even then her answer was oh never mind everyone gets infections.

I am quite sad this friend is so ignorant even though I gave her the literature so she could understand what the treatment has done to me.

Now for a positive note, we have decided to go and stay on the Isle of Wight for a week before I am ready for the next round of treatment.

Ellsey xx

16 Replies

  • Hi Ellsey,

    The Isle of Wight is lovely, I come from Portsmouth,so I have been there a lot,if this weather continues,you will have a lovely time.

    Sorry your friend was a bit insensitive,it may just be her way of dealing with your illness,I'm afraid this happens to a lot of people,I have lost friends because of their inability to cope with the fact I have been ill and if you read the posts,virtually everyone has problems with someone.

    It does re a firm exactly who your friends are,they are the people who call just to see how you are,who listen when you want to talk and who offer practical help.If she lives in Berlin I expect you don't see her that often,so I hope you have people nearby who support and help you more than she does.

    Have a great holiday and enjoy this sunshine !!

    Carole xxx

  • Hiya

    I don't think anyone who hasn't lived through it can fully understand how chemo affects everything and how devastating even a small infection can be. I tried to feel grateful that the people who dismissed its effects had not had cause to find out what the real cost of chemo is...they live a charmed life and I was probably one of them before all this happened!

    Lyndall x

  • Hi Ellsey. I agree with the previous replys that being dismissive is some peoples way of dealing with things they don't understand, and hopefully you have a strong support network locally. I hope you have a lovely time on the Isle of Wight, we went a couple of years ago and loved it. We struck lucky and had fab weather, so hopefully you will too. Take care. Ali xx

  • I am sorry your friend was like that.

    I don't think anyone that hasn't been through cancer/chemo fully understands what it's like. Mentally or physically. I think family have more idea as they see you more regularly. but it's upsetting when it's a close friend

    I hope you have some relief from the pain now. X

  • I think that people who have not had chemo don't understand how it makes you feel like. You cannot put into words adequately how the horrid drugs take its toll on you!! Hope your infection clears up and your hearing OK OC does awful things to us. Enjoy Isle of Wight 😍

  • Just to say the same as the other ladies some people just don't understand the effects chemo has.

  • Hi ellsey

    I don't think anyone appreciates the true anxieties we go through with this rotten disease.

    I knew someone a couple of years ago with breast cancer, and I guess I made all the right sympathetic noises to her struggle with treatment and her fears.

    I didn't really get it, but I certainly do now!

    Have a fab holiday

    Love Judy x

  • I posted before about a friend of mine who doesn't understand. It's like playing top trumps with her. If I can't sleep she hasn't slept for a week. If I'm tired then she has been having afternoon Naps etc etc. I inwardly chuckle now to see what she comes out with. X

  • That sounds like my sister, I shouldnt have shaved my head, everyone flies though chemo etc etc. She runs to her gp every week yet I avoid mine like the plague. So she learned her lesson the hard way wouldnt listen to gp about compression socks so went to a vein specialist privately and paid 150 to be told get compression socks and she did. So she has got fed up of the doctors after that. That is a good way to deal with it, chuckle inwardly because sometimes I nearly go bananas on the phone

  • You know sometimes it's nasty too. For example I'll say 'I've put on so much weight' and she will say well ive lost weight as I really dont feel like eating. I'm wondering if I should just make something up and say my boobs have been so much perkier since being on chemo. I'm sure she would then have a pair to rival Katie price. Haha x

  • I love your sense of humour yes that would be a good idea, and say you love the way you look and that will stop her in her tracks, I will have to think of something to say to my sister

  • Hi Ellsey

    I think we have all experienced those type of friends. They just don't understand or they are in denial. It is so frustrating trying to explain to people you have known all your life that cancer and the side effects are distressing and not the product of our imaginations.

    I talked in another post about us all getting our ideas together and doing one kind of small booklet

  • Sorry Ellsey

    My last reply went too soon. I was just talking about putting together a little booklet of the dos and donts of dealing with a loved one with Cancer. I know there are serious ones out there which I suspect nobody will read. If it was a bit lighthearted and maybe with cartoons that would still get the message across. I was thinking of putting up a post next week asking for ideas. It wouldn't be my booklet but a joint effort of people who really know , and that's all of us. Im sure there are many experts out there who have learned the hard way . Meanwhile have a lovely weekend.


  • MollyO

    What a great idea, count me in, wifi but slow on the island but will pick up your post.

    Ellsey xx

  • Great Ellsey

    Must be idyllic being on a beautiful island. Sorry for the interruption. Enjoy the rest of the weekend. No need to reply. Just watch this space !


  • My family can be a bit like that sometimes, it can be very hurtful. On the plus side The Isle of Wight is so relaxing, in fact I am off there next week for a fortnight to Freshwater. Let's hope weather is kind xxx

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