Terrified

Hi Nina60

I know you’ve been struggling with the chemo and this episode sounds terrifying, no wonder you don’t want to be alone.

Im sorry I haven’t yet experienced chemo so feel pretty useless and hope someone with experience of this comes along to reassure you.

It sounds like you battled through and finished the treatment? Testament to your bravery.

stupid question: is there someone you could call to be with you or stay on the phone til hubby gets back?

Thinking of you and sorry I can’t be more help xxxx

Nina60

Try the chemotherapy group Nina xx

Just want to send you a hug Nina60 .  I have no experience of chemo, I had radiotherapy and brachytherapy, but chemo is something I absolutely dread if I ever need it in the future and I know I would be very scared indeed.  There are lots of us here thinking of you.

Lesley xx

Hi Nina,

Sorry to hear about your latest problem. We had a few such scares when my husband was ill (not with chemo, more with radiotherapy). Is there nobody else who could sort your daughter out? Then, he could stay with you. It is all very scarey, and I think you need someone with you. XXXXXXX

Lots of hugs coming your way nina. Of course you are scared,I would be too let alone having had a reaction to one of the drugs to add to the anxiety. I haven't had chemotherapy either so I can't add anything constructive to help you but hopefully I can help you a bit with your fears for Hannah as I had a similar experience with my son. First of all let me assure you that nothing bad is going to happen to her if either you or your husband do not visit her for a couple of nights. Yes she will try manipulation, scream and shout, threaten and make you and your husband feel like the parents from hell which you are not but you really do need to put yourself first now, especially as you are experiencing reactions. If she's under section she can't go anywhere and is in the best place for staff to deal with her behaviour and allay her fears. I fully realise that nobody knows her like you and your husband know her and know her trigger points, I had the same fears with my son and with people looking after him and it is so very difficult to put that trust and confidence in others especially when you know what they are capable of and how their mind plays out situations. And the guilt you heap on yourself. My son was under section for five years in total, went through five psychiatric hospitals, ending up in medium secure some distance from us so we couldn't be there 24/7. We visited every week but one week my father was rushed to hospital and his need was greater so we couldn't get to my son . Yes, the roof came off, he ranted and raved, called us everything under the sun, made us feel as guilty as sin, yet, because of his condition and his illness that prevents him seeing anything except his needs the staff were able to use the situation to help him cope and adapt in a different way. It was eventually suggested to us that we maybe alter the routine occasionally. I was initially horrified because my son relies on routine and moans if something runs two minutes late, never hesitating to voice his opinions in a loud voice, even if it was down to somebody taking too long in the toilet or forgetting their gloves or whatever, I just wanted the ground to swallow me up! Everybody who didn't know just assumed he was extremely rude, badly behaved and tutted. What they didn't know about was his overpowering strength and violence that could appear just like Jekyll and Hyde turning him into a different person if a situation went on too long and I was just wishing these two ladies would board the coach before he turned it upside down. Still I digress. What I am trying to say is that sometimes , because we have to adapt to them in order to live a degree of normal life as they are unable to adapt and perceive the world as we do, we end up failing to see things ourselves and our own needs go out the window. We get hurt, end up with little or no self confidence and believe we don't matter. We do matter. Although it was hard my son now has coping strategies. He now lives independently with a cat for company which he found, or the cat found him, visits us once a week for a couple of hours. Yes still the same in moaning if things don't run to time, people holding things up and sometimes people in the same room bother him. He can still tell if his things have been moved even slightly and yes we still inadvertently try and read his mood but he has now got the ability to pause and consider before he acts. Ok,sometimes it doesn't work all the time and sometimes he fires off on impulse but we do now get apology, albeit maybe not immediately but some days later and he can admit he is now sometimes wrong but not before he has had a good argument about it to prove a point. Hannah will be ok believe me so please stop beating yourself up. My son has been most attentive since I've been ill, something he would not have been capable of before. He has been able to see others needs for a change and I'm sure Hannah will too in time. Sectioning is still feared I think by some people. My own parents thought it as a blight and didn't want to believe their grandson could be afflicted by mental illness. That only happened to bad,deranged people. Thank God attitudes are changing through increased understanding but more work still needs to be done .  Yes some institutions look scary, older ones like prisons, there are locked doors every few yards, but if you can turn negativity into positivity and let them work with her Nina, I know it's difficult and you are worried yourself and change doesn't come overnight unfortunately, but something, just something chisels away at the hard exterior and allows a bit of understanding in at each experience. Don't give up hope. You and your husband are marvellous parents, you remember that along with the fact that they always hurt the ones they love most. Hannah does love you even though she may not show it. It may be worth letting her key worker know your situation,even though you think Hannah may not cope with it, discuss it with them when you are stronger and you may be surprised. Don't rule out her reactions may be because she suspects not all is well and is panicking because she doesn't know what it is or how to deal with it. You take care my lovely. My thoughts and prayers are with you. Much love lamb.xx

Hi Nina60,

What a scary experience your chemo was.   It's bad enough them having such a problem finding a vein but to follow that with the reaction is really tough luck.   Hopefully now they will pump the drug slower in future.  Better to spend longer over the treatment than have such a bad experience.  My sister in law had something similar - not with chemo but with kidney dialysis.  After one such incident it was done much more slowly and gently and it was OK each time  afterwards.   I hope the same thing works for you.

Hi Nina,

I dont have much experience of help to you , but did have a problem with significant pain in the chemo vein on one occasion , when the paclitaxel drip was started. I told the nurse straight away, she adjusted it to go through much slower' and that solved the problem.  They slowed all the subsequent ones down and I had no further problems. 

I am currently in hospital for a bowel blockage, and they have had much trouble finding a vein for drips. Ended up with them calling an anaesthetist with an ultrasound machine to find one. My arms look like I've been beaten up.

They didnt give up. Where there's a will there's a way.

It's worth it in the end, and it will soon be finished. 

Is there a friend or another family member you can ask to be with you? I think people can be more help than you expect they'll be if you ask. 

Wishing you all the strength and support you need. Sending hugs.

Hi Nina60 Sorry to hear you are having such a ghastly experience.  I've not had Chemo only brachy so can only send hugs and hope the medics are able to manage this treatment that is not so horrible for you. Xx Dawn

Hello,

I had an allergic reaction a few times during my chemo treatment.  My hands and face turned red and I had tingling etc. They had to stop the treatment and give me fluids (IV drip) then carried on slowly with the chemo.  Don't panic ...you're in good hands with the medical staff. Before treatment my dr would give me some kind of allergy pill and also a liquid form of allergy meds turning treatment too. ( I live in Canada just to note). I was able to complete all 6 rounds of chemo.  :-) 

Oh Nina60 I'm so sorry. It's a frightening experience. I had 2 anaphylactic  shocks to 2 different chemos . They would not risk carrying on the treatment and both times my chemo was reduced to one type only. I was petrified that I was going to die at the time, have never had anything like that before. I feel sure they will monitor you and give you huge amounts of pre Meds before your next treatment.  They wouldn't take the risk with me because it made my heart rate so high.  Try and rest, they will fully assess the situation before your next appointment.  

Sending you a hug, an arm around your shoulder, stay strong.

LC 

XX