In view of Sean over at My Life with Myeloma going in for his stem cell transplant next week I decided to do a stem cell transplant holiday packing list. Obviously some items are specific to the Royal in Liverpool, and some to the UK.
Mild hand wash (I took Highland Soap Company and can recommend this one fully – in fact we took a 50 mile detour on the way to Aviemore so I could stock up and get to smell everything)
Body lotion (again Highland Soap Company – this agreed with me even when my usual facial moisturiser which is quite natural didn’t)
Facial moisturiser (mine fell out with me as my skin, which is the only sensitive thing about me went extremely sensitive and I ended up sending Auntie Ann on a shopping spree for Simple stuff, which I don’t normally use as it’s not natural enough)
Shower gel (naturalish)
Children’s fruity toothpaste (I took natural, again, minty toothpaste but it stung when my mouth got sore)
Soft toothbrush (Aldi’s best)
Deodorant (again, strangely enough, natural)
Moist toilet tissue and barrier cream along with mouthwash, mouth coating rinse and pastilles supplied by holiday hosts. (I didn’t make the most of these since the rinse made me throw up, it got swapped for a less volitile one
Hand sanitiser – took my own as hospital one makes my hands raw, applied in conjunction with body lotion (just to my hands) as I did use a lot
Pyjamas (or nightie – whatever takes your fancy – I decided against trackie bottoms and T-shirts even though they are comfy and even though I got up every day from the bed to the chair jim-jams were the right choice. Even allowing for washing being taken home every day you need about 100 pairs. Okay I exaggerate but only slightly. I took about seven and had allowed for two pairs a day – HA – on a good day maybe but I didn’t take into account a nosebleed, the odd bit of vomit and a lot of wee – I would have you know not because of THAT kind of accident but because of missing the jug! I know how hard is it but I now realise it’s no wonder because little did I know at the time but diamorphine, of which I was on 30mg at one point is heroin! I’m a junkie. There was oramorph and paracetamol on top of that. I have to say I don’t see the appeal!
Undergarments – Knickers, bras, socks – I can say without a doubt that men have the easier option here. Bras and IV stands/Hickman lines DO NOT MIX.
One set of outdoor clothes – I kept the pair I went in – I had intended to use this to go home in when I was able to go for a little walk around the hospital when it was quiet for two days before I was released I got dressed as I was not prepared to wander round in my jim jams even though a lot of people do even outside.
Slippers – I don’t do slippers!
Bearing in mind that for most of the time everything, EVERYTHING (cordial, biscuits, sweets) opened has to be used within 24 hours or given away individual stuff is best if available.
As I went in on the Monday after the Wednesday I didn’t really eat any hospital food except for breakfast cereal/porridge and a cooked breakfast provided on my last morning.
Mint tea, camomile and night time tea again these lasted until Wednesday.
Things I did eat
Rice pudding – tons of
Sweets – blackcurrant and liquorice, fruit sherbets (went off these a BIT when mouth got sore), Haribo gums, again sours were a no, no.
Fruit pastille ice lollies
Tinned fruit – satsumas (although I can’t say I ate that many)
Yoghurt – Muller Fruit Corners – generally just the yoghurt – a big NO NO are probitoic yoghurts
Ribena – I went off water, it tended to make me sick
Orange juice (hospital supplied – I know this is contraindicated for chemotherapy but it went down better than just water)
Milk (hospital supplies) with crisps
Hot chocolate (hospital supplies)
Chocolate – this was okay at first but then made my teeth hurt, like cold stuff can do!
Chocolate milk – okay at first but then went off
Hospital supplies TV with freeview (I didn’t switch mine on)
Laptop – downloaded quite a few films from skyplayer, bigfish games also essential if only for visiting husband!
Knitting – socks, myeloma buddies, baby blanket – not much done but like toddler’s security blanky
Books – at least one big one for storing in ‘library’
During administration of melphalan I had a hospital ice lolly. I think I should have gone with ice instead and lots of it. I don’t know whether this would have made a difference to the trouble I had with muscositis but this is the route I would take if need be again. It may not make a difference but it won’t do any harm!
I didn’t have my hair cut/shaved before I went in. I did however have a number one as soon as it started falling out which was 12 days after the melpahlan – however I understand this varies immensely.
As Fred, my first night nurse said when discussing whether I wanted a Periton for itching caused by plaster covering Hickman line (same plaster that she had put down not to be used and which caused a bigger scab than from line – I still have a mark the reaction to the plaster), anyhoo, Fred said ‘Heroes don’t get better faster and it seems longer!’
Whilst I was typing this I remembered something and had to ask B a question.
Me: ‘Did I ask you to look at my green poo?’
Long pause – B: ‘Yes, but I didn’t. Well at least I don’t think I did.’
Me: ‘You can’t have done, you’d have remembered.’
Apparently it goes green as a result of some bloke called Billy and his rubic cube! No, seriously it’s because of bilirubin and the liver detoxifying and as one of the nurses said it’s not like real poo!
And you get to have conversations about wee like…
Me: ‘Is that okay?’
Nurse: ‘Yes, I was just thinking what a good colour it is.’
Me: ‘No, the froth on top.’
Nurse: ‘Maybe it’s normally like that.’
Me: ‘I think we can safely say based on what I’ve seen over the past few weeks, no, it’s not.’
Nurse: ‘I wouldn’t worry about it.’
It only happened a couple of times and only at night and only after taking a certain tablet.
And my final tip – when your wife is driving for the first time on winding highland roads, don’t ask her what speed she is doing when approaching a bend and then after she provides the answer complain that she nearly (allegedly) crashed!