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Feeling isolated

11 Mar 2019 23:42

I guess this subject has come up before but I was hoping I could get some reassurance from others living with cancer. I was diagnosed with myeloma (bone marrow cancer) 5 years ago at the age of 44. I had stem cell and have been lucky in that I have a cancer that can be pushed back.

However, I have to live with knowing it will come back and not knowing when. Every health issue since then has resulted in scans and tests, I am lucky if I go 6 months without a referral. Again, I have been lucky and they have been false alarms. My count has gone outside the normal range but at present it has stabilised so I could stay healthy for a lot longer.

The problem is that nobody around me gets what that is like. The fear of cancer at every test, every mention of someone you know being diagnosed or somebody with your condition dying. People think while you are healthy you are not living with it and I feel completely isolated.

My close school friend also had cancer, we supported each other because we knew what it meant to live with it. She died in November and I miss her support terribly. I don't have my own family or parents, many friends have not stepped up and it makes me feel like I am not valued. I wish they would think to ask me how I am but because my treatment was 5 years ago they do not think to ask any more. I am suffering from anxiety and finding it really hard to cope.

Feeling isolated

12 Mar 2019 00:16 in response to sarahb30

Hi Sarahb30

I can understand your frustration and feeling of isolation.

That is what cancer does to our lives.

I was diagnosed with cancer breast 5 months ago and  have had surgery. I am told there is a good prognosis. But nobody can predict anything as cancers in any part of the body can only be controlled and not cured. 

When  I was first told about my diagnosis my whole world fell apart. I was not able to cope with it.I was feeling bad to even talk about it and share it with my close family. I was isolating myself although my family was very supportive. I don’t talk much about it to anyone and avoid that topic completely even now.The only place I talk about it is in this cancer chat.And that has helped me a lot to overcome my fear and frustration.

There are lots of people here struggling and fighting this and I feel it is worth talking to people who have had cancers as only they can understand how it feels like to have had this dreadful condition.

Feel free to chat here as there are plenty of us over here who support each other.

Take every day as it comes and try to distract yourself with some kind of a hobby if you can.

If you think you are getting too anxious try to see your GP. Maybe you could be slightly better off with some counselling.

We cannot change anything but together we can fight it!!

Feel free to chat here whenever you feel like.I am sure that will make you feel better too.

Regards and take care

Radley

 

 

Feeling isolated

12 Mar 2019 01:28 in response to sarahb30

Hi there, 

I'm so sorry you're feeling like this. I think I sort of understand. Macmillan offered our family counselling last week. I would wholeheartedly say to you to call them and chat about how you feel. Here is brilliant for that too so you'll find the support here really lovely and comforting but as an extra just for you I would definitely try to have some one to one. It's a horrendous thing to live with and I understand what you're saying but I couldn't imagine actually going through it. You're never on your own, we are always here for you, please don't feel so bad. I hope you have a better day tomorrow. Lots of love. Xxxxx

Feeling isolated

12 Mar 2019 10:36 in response to radley

Hi

Thanks so much for replying, it helps just to know other people are there. I have been having free counselling through an amazing charity called the Bracken Trust and I have also got a lot of help from the Penny Brohn in Bristol. I cannot recommend either more highly and would have been lost without them. Sometimes I just want people around me to be a little more considerate but I know they don't understand.

I have looked into PTSD, there is a thread on here, and I think I might have ongoing issues from the trauma of diagnosis and treatment. You give good advice and I think I will try to use this more when I am low.

I hope you stay clear and healthy.

Sarah xxx

Feeling isolated

12 Mar 2019 10:37 in response to MiGi

Hi

Thanks so much for your kind words, my reply above is for your kind words too.

Sarah xx

Feeling isolated

12 Mar 2019 11:40 in response to sarahb30

Hi sarahb30,

I too have myeloma. Diagnosed in October 2016, I achieved complete remission in Feb '17 and after 21-24 months have just relapsed. I restarted chemo last week (VCD).

Some of what you've said rings very true to me - the knowledge that it will come back and how aware I am of each little change in my condition. The amount of people who said, 'You're in remission now, time to be up and about doing things', apparently not believing that I was still affected. Continuously.

In other respects though, while I can sympathise, I'm unable to empathise, as much of my experience is the polar opposite of yours.

Since my first chemo, I've been left with an ongoing cognitive impairment. I have no internal dialogue and am unable to think in the abstract, form an opinion or plan anything. Both long and short term memory is mostly lost. I literally live in the moment, with everything I say or do, merely reactive. Writing now, for example, is a 'stream of consciousness' response to seeing your post. I have no idea what I'm going to write until it's suddenly down on the screen, each word typed leading to another.

All that leads up to telling you that in my case, I'm completely unable to worry about having myeloma, unable to worry about having a relapse and unable to worry about the future. I'm sure that's sounds like a horrible thing to say, as if I'm gloating but that's certainly not what I mean.

I think I'm trying to say that there is an alternative way of seeing things and if there's a possible way of getting to a similar way of 'non-thinking', then I'd advocate striving for it.

Not to get a cognitive impairment but possibly talking therapy or medication. Duloxetine has been an outstanding medication for me. An anti-depressant, it simply doesn't allow me to hold a negative thought for more than a couple of seconds.

As a family we've found constant talking helps. It just doesn't seem possible to maintain a constant state of crisis. We all know I've got cancer. We all know I could die of it sonner rather than later. We've had crises and we've come through. We can't maitain that level of concern, so we'll deal with each moment as it arrives.

And finally, when you can start making jokes about it all, you've got it cracked.

I really hope I've said nothing that might upset you; please be assured that I write with the best of intentions but sometimes this cognitive thingy causes me to mess up.

 

 

Regards

Taff

Feeling isolated

12 Mar 2019 12:27 in response to Taff

Hi hope you don't mind a man butting in I've had cancer for the last 3,1/2 years I had kemo and hormone treatment to try and keep it down. It went down till last year then started rising my specialist wants it to get to a certain count before more kemo, they told me that it's not curable I just have to keep going on this way till it doesn't do any good, I know what you're going through.look after your self some people don't know how to talk about cancer it scares them.

Billy 

Feeling isolated

12 Mar 2019 12:29 in response to Taff

Dear Taff

Thanks so much for your reply. It is so helpful to here from people who understand your situation. You did not offend, I recognise that my internal dialogue is my problem, and I cannot imagine what it must be like to manage with the limitations your cancer treatment has created. I can definitely understand what you mean about it offering some benefit to you too.

I do find my counselling immensely helpful but I guess it hasn't given me the tools to live more mindfully even though I strive to be more mindful. What I also recognise from your message is that you are able to talk openly and freely with your family which makes a huge difference and this is what I think is the root of my problem. I have no family and only one of my friends has been with me through all this. As it has had a huge impact on him I think he prefers not to discuss it in detail so I struggle with the internal dialogue instead.

At treatment stage I did laugh and joke about it because people enabled me to. It is only now, after 5 years of being in remission, that it is a struggle because people don't offer that up any more.

I really hope your chemo goes well and thanks for being a voice and a person to talk to 

Sarah x

 

Feeling isolated

12 Mar 2019 13:17 in response to sarahb30

Hi Sarah I might get this all wrong I hope you don't mind me butting in I've had cancer 3,1/2 years more actually it took them time to find it it's not curable I have kemo it goes down I wait it goes up it just keeps going hopefully along time my specialist told me yesterday that it's grade 4 is is going up again. Some friends keep saying that I look well I might but I don't always feel it some people don't know what to say they're worried about saying the wrong thing,look after yourself good luck. P.s I put this on earlier but put it wrong place.

Billy 

Feeling isolated

12 Mar 2019 18:05 in response to Billygoat

Of course, I don't mind if you are a man or a woman, I am just really touched by people taking the time to give me their support. I am finding it such a relief to talk to people going through the same thing, as sad as it is. 

You are obviously going through a very tough time and it is incredible that you are managing to cope. Watching your count and waiting for what you know is gruelling treatment is so difficult. We all have to find inner strength and at the same time you have reached out to me, I feel very humbled and so much better knowing that this support is here.

Please look after yourself and if you ever need to talk please find me!

Sarah x

Feeling isolated

12 Mar 2019 18:39 in response to sarahb30

Hi me again I'm glad you don't need hormone treatment I'm having hot flushes I'm on tablets which help a lot but I'm glad it's not summer yet I've also put on 2 stone, from being 18 I had always been 10,1/2 stone its caused by the injection I have to keep taking to keep the cancer down. If you want to check on me check on billygoat on prostate cancer and living with cancer. I've been writing on other sites.

Billy 

Feeling isolated

12 Mar 2019 18:43 in response to sarahb30

Hi sarahb3

Hope you are feeling better

Nice to know you are already going for some counselling and that has helped you too.

I agree  people don’t understand how you feel and there is no point in talking to people about your thoughts and feelings either.

Only people like us here who have got the condition would understand what it feels like to be diagnosed with cancer- something which is going to be there for the rest of our lives..

The sooner we learn to accept it the better for us.

I am happy that people have responded to your post ( which was what I had expected)  and specially someone with your diagnosis too.

You don’t have to feel isolated- we are all there for you whenever you need us.

So be brave and never give up.

Best wishes and Regards

Radley

Feeling isolated

12 Mar 2019 18:53 in response to radley

Hi

I feel so much better already having reached out and received such warm and kind responses. I have also replied to someone else's post and hopefully paid it forward in some way. It has taken me five years to realise the support I can receive by sharing on this site!

Thanks for being there.

Sarah x

Feeling isolated

12 Mar 2019 18:59 in response to Billygoat

Hi Billy

Thanks for messaging again. I don't have hormone treatment but the chemo triggered early menopause so I do have hot flushes now! I also put two stone on and have found it almost impossible to lose it. I think it's hard because you have all the illness and mental issues to deal with that mean you are not yourself and then you don't look like yourself any more either!

I guess we just have to focus on managing our physical and mental health as best we can. I sympathize over the flushes though!

Sarah x

Feeling isolated

12 Mar 2019 19:13 in response to sarahb30

Hi Sarah, I'm sorry you are feeling neglected and you're not alone is this fear of cancer returning. I have friends who have had breast cancer and constantly wonder if it is coming back.  Is the back ache just that or something more worrying, have I just got a headache or has the cancer returned? My neighbour has lost her Mother and sister to cancer and although  she hasn't had cancer tells me she constantly fears she'll get it.  So it's not uncommon to be worried.  People's lives move on Sarah and if they supported you whilst you had cancer they probably feel you should be happy and living a cancer free life, they will never understand what you have and still are going through.  So why don't you ask your GP if there are any support groups you can join, or tell friends how you really feel, they don't mean to be neglectful, just a little inconsiderate on their part.  Perhaps a chat with a Counsellor would help relieve your anxiety, once again see your GP, they can help.  I would imagine one of our lovely Moderators will pop along and point you in the right direction.  So, always someone who can help you on here and fully understand your concerns.  Warm wishes, Carol x