[gregaParticipant]

Hi there, just looking for a bit of guidance and hand holding I suppose!
My wife had her SCT approx 10 days ago, at first all was ok, but the last few days she’s been very poorly.
Sore swollen mouth and constant diaroheah, she’s now very confused and seeing thing,last night at 02.00 she pulled her canulas out, packed her bags and tried to walk home,luckily she was stopped.
She had a Hickman line fitted but had to have it removed as it picked up a bad infection, which in turn have her an infection.
She’s hungry but can’t eat because it’s to painful.

Is all of this normal? Or is just having a tough time. Just needs some pointers who’ve been through it,we knew it would be tough but this just seems to be tougher than we expected.

The nurses it appear are just fire fighting the issues and never getting on top of anything. She was there shaking constantly last night, she wasn’t cold and I asked the nurse what’s up and she said its cos my wife is scared of taking tablets… I’ve been married to her for 25 years and she’s never once had a problem taking tablets.

Thanks in advance.

[davidbrParticipant]

Hi Author. Sorry to hear of your wife’s problems.

When I had my SCT in Dec 2013 after the Chemo I was very violently sick. Then I had very bad diarrhoea for about a week. I remember one particularly low point when I was sitting on the loo with my pants full of poo. I hadn’t been quick enough dragging the drip to the toilet. Blood running back up my cannula where it hadn’t been changed and feeling very poorly. I thought it can’t get worse that this can it.

I didn’t have a sore mouth as I used the mouthwashes they gave to excess. I had a very sore throat and could only drink cold milk for about 3 days.

It does get better but is a very bad experience which I wasn’t really prepared for. As you say the nurses bless them were too busy to give the help I needed so I was left to fend for my self. Often waiting hours or days for treatment to arrive for sore throat, sickness, diarrhea etc. which didn’t help much. Even getting Paracetamol for my constant headache was difficult.

I must say I am concerned about your wife’s Hickman line and infection that doesn’t sound good. It needs to be sorted as soon as possible.

I was very ill for about 2 weeks but got better in the end and was out after 16 days which is very quick.

Hope your Wife feels better soon.

Regards David

[SalParticipant]

So sorry to hear what a tough time you are both having. I don’t have experience of SCT yet. Hopefully my husband will get to that stage later this year. However, I do have experiemce of him being confused and disorientated (and much more besides). In his case it was psychosis caused by steroids – namely dexamethasone, which is a recognised side-effect. He was hospitalised for nearly 2 weeks after he, as we put it  “went loopy”, and, like you, I wasn’t happy with the way it was dealt with. I was constantly fobbed off, but it was serious – particularly when he managed to get out of the ward and end up a mile along the road, having walked in his slippers.

Your wife’s confusion could be caused by something completely different, maybe the infection, but do ask if it could be drug-related, and make a fuss if you feel you’re not being listened to. I have found there is little awareness of the psychiatric issues that can occur during treatments and you really have to push to make any progress. My position is that I will always be polite, but my concern is to ensure that my husband receives the best care and feels safe. Do what you need to do to ensure you are satisfied that you are being listened to – you know your wife better than any of the nurses does.

I hope things get a lot better for you both very soon but it is important now for your wife that she feels secure and for you that you know she is being cared for while you are not there.

With best wishes,

Sarah

[CarolsymonsParticipant]

Hi

Jump up and down and shout loudly! I am 13 weeks post transplant and your wife’s behaviour is certainly unusual from my experience. You need to check what drugs they are giving her. Every time they brought me tablets or wanted to put medication through the drip, I asked them what they were and why they were giving them to me. There was no real discussion previous to bringing stuff….they seemed to get my blood test results, then the doctors would prescribe more drugs….potassium, blood, platelets, saline, anti nausea drugs, antibiotics (just cos my temperature went to 37 even though I had no infection) etc etc. I had the terribly sore oesophagus and couldn’t eat or drink for a few days and also resorted to cold milk for some time after the pain eased. But…they kept trying to give me oral morphine for the pain, then when I refused they sent in pain specialists who wanted to give me OxyContin I think it was. No thank you! See if you can find out what drugs they are giving your wife because her behaviour is very worrying and far from the norm in my opinion.

Carol

[coastiParticipant]

Hi there,

Sorry you and your wife are having such a  touch time.  I didn’t have the delusional symptoms when I had my autoSCT but it very much reminds me of when my Mum was in hospital having a hip replacement.  She caught a simple urine infection and it caused her to be totally delusion, refusing medication not reckoning people.  It was very scary at the time, and I had hard time believing nurses when the said “don’t worry, it’s the infection and antibiotics will fix it”.  Sure enough it took a couple of weeks but antibiotics did work.  Your wife’s Hickman line infection maybe causing her confusion very possibly?

The sore mouth is very common with the melphalan chemo for transplant.  I had it quite bad for 4 or 5 days, the nurses gave me co-codamol and oral morphine which helped. It goes away quite quickly once white blood counts starts to come back up.

Best wishes, hope things improve soon for you

Laura

[keithmtParticipant]

Like others, I am so very sorry to hear of your wife’s problems.

I had my SCT 14 days ago and was very pleased to be in hospital as I felt very unwell at times. Swollen mouth (but not sore), very sore throat and oesophagus meant I couldn’t eat and diarrhoea meant I didn’t feel like eating. I’ve been home 3 days now and although I still have no appetite, my sore throat is very gradually feeling better.

I hope you manage to sort out your wife’s issues, I think that like others have said you have to insist you get some answers.

Kind regards

Keith

[Anonymous]

Since publication of these recommendations, several trials have demonstrated superiority of tandem autologous SCTs over single autologous SCTs with regard to event-free survival..

[Author]

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