Still feel abandoned and feel like giving up.

The ongoing saga of this ?Tamoxifen reaction. After 4 days of steroids and antihistamine, no improvement and not much response when phoned GP. Went to local A&E as emergency last night, doctor prescribed stronger antihistamine, said if no improvement go to GP in morning. I have been to emergency GP today who said finish steroids by Sunday, carry on with antihistamine and they will get me into the oncology clinic. Left messages with oncology sec, nurse any tom dick or harry as they never answer phone to please somebody help me. Not sure if having panic attacks now or further reaction to drug with all the histamine and andrenaline, steroids etc but feel anxious, sweaty, tried to go out but had to come home. Lovely husband but he says I am making it worse, like I can help the way I am. Never had anything like this in my 59 (almost years). Never had anxiety/panic attacks but have heard people say you think you will die and I can identify with that. Just give up and accept this is it.

[Hidden]

Hi Northengirl2,

Did you give Ruth a ring? I am sure she will help you...it is disgraceful the way you are being treated (or not being treated) no wonder you feel abandoned the trouble is when you blog the OvACome helpline is closed... try and give them a ring tomorrow... they will be able to advise you on the way forward..sending you love and best wishes x G x

[beckyh]

Hello there, I am no expert but know that when I was on steroids as part of my chemo regime they made me feel horrendous; pretty much as you describe, anxiety, panic and almost a personality change. Could you call the out of hours GP service and see if they can change or reduce the steroids. You have been through so much and you could really do with having to deal with this. A change of medication could resolve it for you. And, you can't help the way you're feeling if the drugs are behind it all.

Gwyn's suggestion of talking to Ruth is a good one too - I know the lines are closed for now but if you can hang on until the morning give this some consideration too.

I hope you can find a way through this soon. xx

[Hidden]

This is appalling. I would call PALS/Complaints at your hospital, explain the situation and ask them to help you get the advice you urgently need. Steroids can have that effect, depending upon dose but you must be extremely stressed by your reaction and the fact that it appears you cannot tolerate treatment for your cancer. If you get nowhere with PALS I would be tempted to fax the Chief Exec of the hospital. It would take only a few moments for a specialist onc nurse to put your mind at rest.

I know there are alternatives to tamoxifen, it may be that you need one.

I had some problems with the hospital where I was initially treated, I now travel for check ups. I am sure the huge improvement I found has helped me to stay well. Do not be afraid to complain.

[wendydee]

Hi Northerngirl

Gwyn is right. Ruth would be able to put your mind at rest by giving you some good practical advice about what you can do and who you can contact, I am sure. Why don't you try and ring her tomorrow, before you have a weekend to put up with. You really shouldn't have to be feeling like this. I think if you ring 08453710554 you will get an answer phone and can leave a message, or better still, wait till 10.00 till 5 tomorrow and ring the helpline and get some answers and support. They are really brilliant on there. It sounds really horrendous, what you have Ben going through, and all because of drugs that are supposed to be making you better

Good luck

Love Wendy xx

[Whippit]

Dear NorthernGirl

I was horrified to read how your local NHS seem to be completely oblivious to your suffering. I just hope you managed to get through the long night. There's nothing worse for feeling alone and abandoned in the dark hours which is when you need the company and reassurance of others.

I'm sorry I wasn't online yesterday to send a more comforting message. I just hope this morning finds you in a better place - and at least it will be good to have the focus of ringing Ruth at Ovacome as I know she'll be reassuring.

Is it possible to change your GP and your hospital? It seems as though this could be the best thing for you.

Meanwhile hold on there - ring Ruth. Keep in touch. We'll do all we can to hold out a hand and send our love xxx Annie

[MargaretJ]

Dear Northern Girl,

Where are you? I was in St James' in Leeds when I had my first allergic reaction to Carboplatin and was very impressesd with the treatment! Yours sounds horrendous!

You are not alone! believe me! Ring Ruth this morning and take heart! The high dose steroids and anti histamines made me feel absolutely awful and I was 'swinging from the light fittings' in a manner of speaking! It was truly awful and I feel for you.

The only positive I can give you is that the people on this site helped me to cope and get through it! I do not have a partner but a lot of my friends, who are lovely and supportive, were of the "talk about something else for a change" club, as if, with this condition and the allergic reaction, one could think about anything else!

We are all here for you! Do not give up but, if necessary go stand in reception at the oncology unit and scream! You'ld be amazed how quickly you get attention! LOL!

Per ardua ad astra! Here's to some improvement!

Love Mxxxxxxxxxxxxxxxxxxx

.

[jan50]

Hello northern girl,

I'm afraid I don't have the expertise of many of the ladies on this site, but know they give very good advice, but I just wanted to send you a hug and say from one northern girl to another ! i i am thinking of you

X

[sarah1963]

This makes me SO cross on your behalf. I know that doesn't help and for you, is probably counter-productive. Name and shame your hospital please.

If all else fails (and your feeling strong enough - which you probably aren't) you could go to the oncology Dept and say that you are not going anywhere until you are seen.

GPs are simply no use when it comes to chemotherapy as it just isn't their area of expertise.

I am sure that things will improve for you and this is just a horrible episode but you do need to be seen by the right people.

Lots of Love Sarah

[Gina555]

It sounds like you’ve been having a really hard time. I can relate to what you say about your husband not getting it, my partner is lovely too, but after my op, when I couldn’t eat, he thought I was being fussy about food .. er, no, it’s not being fussy (like I want to waste away deliberately!) it’s just that trying to eat is like trying to force down a mouthful of sawdust! Sorry to hear how bad you’re feeling, but I’m sure it’s because of the reaction to the meds and the stress of not getting the help you need. I don’t know if this might help, but I learned a technique for dealing with anxiety attacks, that helped me: lay on the bed or sofa or sit in a comfy chair; relax and concentrate on your breath, feel it gently going in and out of your body. Whenever your mind wanders, gently bring your attention back to your breathing. When you find your mind wandering, say to yourself, ‘Ah, there’s worrying’, or ‘there’s planning’, or ‘there’s thinking’ or ‘there’s anxiety’, or ‘there’s catastrophising’ or ‘there’s reminiscing’ – or whatever it might be, and see the thought sailing through your mind like a little boat sailing past on the sea. Step back from the thought. It’s not reality, it’s not who you are, it’s just a transitory thought – just let it sail past.

I’ve tried to condense a ‘mindfulness’ training course I did into one paragraph – I’m not sure if that’s possible, but I hope it might help. I’m sending you positive vibes and hoping you feel better very soon. Gx

[daisycandoit in reply to Gina555]

I have been praticing living in the moment because one day is too long at times, I found abook at my friends house on Mindfulness so I have borrowed it to read. Nice to read what you have written, well put

[pixinafix]

They're never there when you need them. Steroids can do weird things to you. Keep plugging away at the oncologists and your GP. Sunday will be feeling years away. I find it useful to break time down into chunks, so it's 48 hours to Sunday, so by tea time I'll have done a twelvth of the time and by bedtime I'll be a fifth of the way through.

Good luck and hang on in there, you will get through this difficult time.

Much love

Christine..

[daisycandoit]

Dear Northerngirl, along with the others on here my heart goes out to you, we go through enough torment without having to deal with what you have, I hope and pray it gets resolved soon, we are all with you lots of love and hugs Diane xxx

[Wiganw]

Hi

I reacted to taxol in hospital and was given antihistamine injections which worked ok for me.

Sounds terrible the way you have been treated. You do need to try and relax which I know is easier said than done. I used a meditation/yoga cd which a friend bought me as his wife used it during cancer . I did not think it was for me but tried it and really helped me.

Hope your feeling better soon

Sx

[ScardyCat40]

Hi Northerngirl,

I just echo what the others say and speak to Ruth. I've been having a similarly frustrating experience and talking to Ruth helped. Where are you being treated!?