What A Night!

Oh dear! It has been a tough few days which apparently climaxed on Friday evening. Between 8pm and 4am I had more doctors assembled in my hospital room than I think I’ve ever consulted in a lifetime. No fewer than four of them wanted to listen to my chest. By the time the fourth approached my bed, I was cross and said “no!” and told her to go and ask the third doctor for the information she needed.

In my drowsiness I remember one of them standing at the bottom of the bed and saying, “you really are very unwell” – which I did not think was very helpful. They were trying to work out how to control the consistent high temperatures along with worrying low blood pressure and a chest infection. At one point the Head of the Intensive Care Unit came to call saying he didn’t have a place that night but he felt that I could move in to the Unit on the morrow. Fortunately,  by morning, they’d agreed a new treatment regime which seemed to work and the panic abated.

The funniest thing about that night, perhaps, the only funny thing that night was when at about 3am the nurses started clearing my room of all furniture and the door opened and a man dressed in white, dragging behind him what looked like a small white house entered the room. It was enormous. Drugged to the eyeballs, I truly thought, I’d started to hallucinate. He manoeuvred it in with some difficulty and the started assembling it. I thought a bedroom was going to emerge and that he was some hi-tech hobo who had to choose a different location every night in which to assemble a bed and lay down his weary head and that tonight it was my turn to accommodate him. But, as the assembling of different parts proceeded, it turned out to be a mobile x-ray unit. It had all the gizmos. When he opened it out there was a little control room for him to sit in, monitors, the lot. They shoved a frame behind my back in the old fashioned way and “beep”, it was done .

It didn’t get that much better until today when I know I’m definitely on the mend. I’m still unable to eat more than five or six hundred calories a day, but I’m much stronger. My neutrophils, those pesky little beasts we talked about in earlier blogs, are rising fast. They are currently over the figure at which I was told I could go home. So with leads leading out of my arm, a catheter and an oxygen feed through the nostrils, when my dour Scottish consultant, Professor Steve Mckinnon came to see me this afternoon, I said to him, “I assume I can go this afternoon?”It’s the first time I’ve made the dour Scotsman laugh. “It’s likely to be another two weeks,” he told me.

Major panic today, my daughter Sarah has given me a purple toy cat. I was clutching her through out the whole stem cell transplant. It’s funny how you start attaching undue importance to such apparently meaningless things but when I came back from a procedure in the bowels of the hospital this morning, Catty as we call her had disappeared. A major alert was put out in the ward and my favourite Irish nurse, Maria, even went to the laundry to check all the bags of dirty linen. Catty was found among my sheets! And she’s lying on my chest purring as my daughter Sarah writes this.

catty

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8 thoughts on “What A Night!

  1. Dearest Sue – I can’t believe they are still use Melphalan. It seems crazy that scientists send people into space, but still use these appalling chemo drugs. It is like using a sledge hammer to crack a nut!
    Delighted the white cells are growing – you have grafted! Presume you are having cylosporin too and will be for a while. I think you are doing brilliantly. Just be patient and wait until it is safe to go home – you are so vulnerable right now. Much love Jeni

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  2. Grrr – I fight a constant battle with this website, which invites me to comment, then tells me that I have to log in, ignores my established password, creates a new one, then wipes out all that I have written. This, of course, is a small irritant only – but I desperately want to communicate.

    I guess it is possible that my last comment, written just half an hour ago, hit the spot. But if it didn’t, I want to report that I wept as I read about your ghastly night with doctors looming over you like the vultures in the cartoon version of the Jungle Book. Thank God the news at the end was soooo much better.

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  3. When I had my cancer related surgery,I became very attached to a large stuffed white rabbit given by a friend. I clutched it against my sore incision, and we were inseparable. It went with me to my first chemo session, and my doc put a bandaid on it. It was a big day when I let it go…..so very happy to hear things are finally turning around. Let’s hope you can soon put more and more behind you. Much love and hugs.

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  4. neutrophils rising, hooray! your new immune system has fought off its first infection (with a little help from the antibiotics, of course). I don’t suppose you feel like upping sticks to go home right now – but feeling rotten does help to overcome the feeling of being incarcerated. In France we had a mobile x-ray every Monday – no booth, though, the 2 chaps just stood in the corridor and operated it remotely. 4 months of it – I still glow in the dark – and I got used to being exhibited topless to passers-by. And you’re actually eating! That’s wonderful – I feared you might be like I was at this point, unable to eat or speak. Looks like you’ve avoided the very worst of it, I’m so pleased. It’s going to be pretty much all onwards and upwards from here, I just know it is.

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    1. Gosh! It sounds as if you had a grim time. But who was the patient? Fred or Rosey? Am trying so hard to eat but threw it all up this afternoon, so not always successful. Thanks so much for staying in touch.Sue

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  5. Rosey here – so glad you’re up to communicating – and so sorry to hear you’re being sick – I was too, even though all my food was coming from a daily drip marked 1200 calories. It was the most terrifying part – I wanted to warn you about it, so that you wouldn’t assume (as I did) that you were dying…. but on the other hand, I hoped you wouldn’t be that ill, so there’d be no need to prepare you for it! I’m certain, now, that you’re not going to get the top grade mucositis I had, because you’re so far in without the severe symptoms, but honestly, when I listened to the coverage of ebola, I was thinking ‘been there, done that, holds no fear for me anymore’. I had a hair trigger gag reflex for about 6 months post-transplant. I still use yoghurt to get my penicillin down, the tablets do seem awfully big. I couldn’t swallow the potassium capsules and the nurses recommended yoghurt. I tried and failed, so I then emptied the capsules into the yoghurt and ate them that way for a few days – until they caught me. Apparently it’s very bad for your innards. It wasn’t the cause of my sore oesophagus though – that was all down to the mucositis. I’m not sure whether your sickness is due to mucositis or something else – you haven’t mentioned mouth ulcers or lollies in your latest blog, so I’m hoping you’ve escaped. Once the neutrophils start mounting the ulcers heal. I was very pleased with my food drip – such a relief when I no longer had to try to eat and drink. I guess they don’t dish out the feed drips lightly, but if they see you’re wasting away because you can’t eat enough I’m sure they’ll put you onto one – so don’t fret about how little you can manage to eat.
    The muscle wasting that’s such a common problem is due to inactivity (caused by fatigue in the main) rather than lack of calories. Some anorexics can go running on an apple a day (literally) so once your fever’s abated you need to concentrate your efforts on moving about, preparing to return to Spain with your muscles in trim. It’s the main positive thing you can choose to do to participate in your cure, yet it’s so hard when you feel so washed out. I found short bursts of mild activity, followed by collapsing on the bed, flat out, worked better than sitting. Do they dress you in support stockings?
    And I too had that thing where the doctor tells you that you really are gravely ill/very poorly indeed. It was as if, having caught me laughing with a nurse, he thought I wasn’t taking it all seriously enough – or maybe that I didn’t understand why I was in hospital. It’s so unhelpful! Why do they do it?
    I’m glad your x-ray seems to have passed muster. One of my weekly chest x-rays showed a blob, so I was taken out of my tent, dressed in the protective outfit and wheeled across the hospital for an MRI scan. AOK happily. I’ve just heard from a friend that portable MRI scanners are in use in some clinics in a pilot scheme in the south of France – so do you know for sure that it was just an x-ray you had?
    For me, thanks entirely to the super sterile French system, there were no infections immediately post transplant – and that’s with a myleoablative conditioning that blasted away my entire immune system. You’ve had a milder conditioning, so you wouldn’t expect such severe mucositis and you will have been left with a little bit of an immune system to fight against infections. The antibiotics they have to give you to treat infections can suppress your immune system, but since your neutrophils are up it looks as though that’s not been a problem. I should say that when I read some of the other transplantees’ blogs I feel I got off lightly. I’m almost overwhelmed with the love I feel for my donor and everyone who cared for me. From what I’ve read, only a few years ago, allogeneic bmt wasn’t an option for anyone over 60 because the myleoablative conditioning is too harsh. It might not seem like it right now, but you’re very lucky!!!
    Hope I haven’t tired you out with reading!
    Rosey x

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  6. The only time I have hallucinated was when I had septicaemia. I was at home in my teenage bedroom with the rest of the family fast asleep. Not me I spent an entire night clambering over endless sets of antique chests of drawers. Vast mountains of mahogany and walnut bureaux with open drawers and intricate handles. Very unsettling – even in high delirium I knew that this was a pretty dull hallucination. Admittedly I love antique furniture but not a single linen press or tallboy or escritoire. Consider yourself lucky to have your hallucination prove to be a reality. Better than hours feeling like Arthur Negus.
    Anyway I am proud of you and you are now on the way back to health and being the Sue we all know and love. Keep strong and getting more neutrophils. Hxx

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  7. Dearest Sue – So glad that Catty was found and that you are slowly beginning to feel a little stronger, after what sounds a very rough time. Hopefully the nausea has also abated – and how is the mouth, have you managed to lick any of your ice lollies yet? Look after your good self and your Welsh Fan Club is thinking of you heaps. Much love Z xx

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