Tag Archives: stem cell transplant

Get Well or Die Tryin’

Where to start?  The beginning is always a good place.  So, when a man and woman love each other very much they… Just kidding.  Let’s start with…

Thursday – Chris and I arrived at the Royal to ‘Are you in the diary?’.  ‘Yes, the myeloma nurse’ who I’d spoken to on Tuesday ‘booked me in with the other receptionist.’ We took a seat and shortly after got called through by one of the nurses who said ‘So you’re here for blood tests for tomorrow’s appointment?’

Me:  ‘Well no, I’m here to see a doctor about the numbness and do I have an appointment for tomorrow?’

Nurse:  ‘I’ll just double check with receptionist.’  On coming back ‘Yes, 10:10.  Do you want to wait to see a doctor now since you’ll be seeing the consultant tomorrow – more knowledgeable that’s why their paid the bigger bucks.  It’s up to you.’

So after having bloods taken we went into the city centre where Chris did a little shopping and we dined Zizzi’s – as they do Chris’s favourite ever meal Casareccua Pollo Piccante and I had good ole Spag Bol (or rather Spaghetti Alla Bolognese).

Friday – I was unsure as to who I was seeing at clinic and when one of the health care workers checked with the myeloma nurse, who was a bit exasperated (not with me) that I’d not managed to see a doctor on Thursday after making all the arrangements for a senior doctor to see me, it turned out our appointment was with one of the transplant doctors and the bone marrow transplant co-ordinator to discuss the prospect of an allogenic (donor) transplant.

We were in there an hour and 20 minutes, possibly because a big chunk was taken up with altered sensation talk.  Along with my right forearm the pad of my left thumb and the right side of my chin now feel odd and I still have, intermittently, the pain in the crown of my head.  Straight after the appointment I got some free x-rays on my head and neck (skull and cervical spine to the more technical amongst us) and Dr S did a request for some MRIs.

When we got to the transplant bit Dr S explained that the role of allogenic transplant in myeloma has no hard and fast rules.  It is neither proven or unproven as THE way to go however, given the way things had gone so far for me, without giving a donor transplant a whirl the prognosis was very poor (he did also say really poor at one point and hey, overall both are better separately than together – really very poor).

Last appointment the Prof had mentioned another autologus (from me) transplant and then a mini allo (from some random stranger) transplant.  However Dr S said that another auto couldn’t really be considered for two reasons – he could almost guarantee I wouldn’t produce any cells to harvest (we had trouble last time and there’d been the subsequent melphalan for the transplant last year) and with the plasma content of the bone marrow trephine being 80%-85% (the Prof must have rounded up to 90%) that was a whole bunch of myeloma cells to potentially give back.

As my paraprotein is zero but my bone marrow plasma cell percentage is 85% and my free lite chains (not something I’ve paid any attention to in the past) haven’t been measured since February Dr S thought it worthwhile to count them now in case the myeloma has mutated and stopped producing a full measureable monoclonal protein – the full one is made up of a heavy chain (IGa in my case) and a light chain (mine is Lambda).  In fully secretary myeloma the full proteins are measured and known as paraprotein, M-spike, PP, M-protein.

In some people however only the light chain is produced and having no accompanying heavy chain to bond with it is not measurable using the regular test that picks up only full monoclonal proteins.  However since the advent of a way to measure these free (unattached and possibly flirty) chains the number of patients that show up as truly non-secretary (eg, not measurable through blood or urine) has dropped to 1% or 2%.  Everyone, with or without myeloma, produces excess free lite chains (maybe in case one of the full proteins gets divorced) but an inordinate amount in someone with myeloma would be indicative of active disease.  So I had blood taken to check out the number of loose lite chains cruising around without a partner.

I also had a blood sample taken for tissue typing (HLA).  Apparently there are 10 potential pairs to match – 10 is good, nine is okay, eight is do-able but not ideal, seven and below are non starters.

The other thing that would need to be looked at is reducing the 85% plasma cell content before transplant.  It may, hopefully, be sitting there inactive at the moment (freelite test pending) but to transplant donor cells at that percentage would be like giving the myeloma cells a chance to claim permanent squatters’ rights before the donor cells have fully moved all their stuff in and made themselves at home.

With regard to the transplant itself if we KISS (Keep It Simple Stupid) the figures are – 1/3 kark it as a result of the transplant or complications arising there from, 1/3 relapse and ultimately pop off because of the myeloma and 1/3 go on to have a long remission.

As we needed to go to my Auntie Ann’s on Friday if I were to see her this weekend (she was going to London Saturday/Sunday to watch Saints vs Harlequins) I didn’t get my lunch out – well not fully, we ended up with our first ever Subway Subs eaten in just opposite the hospital.

Saturday – Letter arrived telling me that I had an appointment on Friday!  I had a slight temp in the morning of 37.3 along with a bit of a headache.  Mid afternoon a friend with myeloma had rang to say there was a local show in aid of Myeloma UK by a young lady in memory of her mum, he’d just seen details of it in the local paper and him and his wife were going.  About an hour later, by which time I’d persuaded a reluctant B that he’d really like to go, I started feeling a bit ropy and my temp went up to 37.8.  So needless to say we didn’t make it to the show – not least because I didn’t want to share anything I may have acquired, because I’m mean like that.  I felt somewhat better after a cool bath and some painkillers, played a computer game with B and then started feeling ropy again and had a kip – very little knitting got done, the volume of production of which acts as a wellness barometer.

Sunday – Temperature this morning 37.3, after paracetemol 36.9, generally felt okay, tired, slightly headachy but okay.  Then at 10:00, the time I’d been instructed to wake B up, I started feeling decidedly off, got up from the desk to wake B and felt sick.  Shortly after, after getting B to encourage Bud to get on the bed with him so I had the bathroom to myself I parted company with the few things I’d consumed in the two hours and a bit hours I’d been up.  How is it though that one and a half cups of coffee, curcumin tablets, a calichew tablet and probably one digestive biscuit (I got two out but shared with Bud) assume the size of a family bucket from KFC when they make an encore appearance?

Speaking of Bud, he’s been having ear drops administered since Wednesday, reluctantly mind but not too badly.  This morning, as he got all excited in a ‘Please don’t stick anything else in my ear – I’ll be really, really good if you don’t’ way and after enticing him in with the treat he would get once they were in – I PUT THEM IN THE WRONG EAR!

We’re supposed to be going to a friend’s for tea tonight so I’m going to take it super easy this afternoon as I HATE to miss out on anything particularly if the missing out is myeloma related. Mind you, if push comes to shove I’m sure she’ll let me lie down on her settee – I mean, it wouldn’t be the first time and it gets me out of even contemplating cooking.

Woo foo

A few appointments ago when we had a woo hoo and a couple of WTFs Roo commented it was more of woo foo, so let’s see how today’s appointment went on the woo hoo/foo-omitor.  Oh, and Chris accompanied me whilst B slept it up at home.

Hug each off one of the health care assistants – woo hoo

Prof said I was very intelligent – WOO HOO (Chris restrained herself from commenting that I was a real smart arse)

Prof said he was perplexed – hint of foo

Paraprotein in blood not detectable – woo hoo

Cytogenetic results not in – mmm as I shoulder shrug – as in not that important in the scheme of things…

Plasma cell level from bone marrow sample – 90% foo foo foo foo foo foo foo

Prof showed me the computer screen to show he wasn’t getting confused at his age after we had a déjà vu moment of conversation from our last appointment but in reversed roles…

Prof: ‘It’s 90%.’

Me:  ’90!’

Prof: ’90.’

Me: ‘Hahahahahahahahahahahahahaha!’ Okay, well obviously not that bit, the Prof didn’t laugh last time.

Chris said later that she thought I was possibly the only myeloma patient he saw who laughed at such news but as I’ve said before being miserable doesn’t cure myeloma – correct me if I’m wrong.

So my monoclonal protein level as at 29 July is not detectable yet the plasma cell content of my bone marrow as at 5 July is 90%.  As I explained to B the sample could theoretically have hit a pocket of plasma cells and the rest of my marrow could be as clean as a whistle but that still left a pocket of not 10%, not 20% but 90%!

Prof said that somehow there was a 90% content sitting there inactive – as shown by the still undetectable paraprotein level.

I asked if it was likely that if a bone marrow sample had been taken after my transplant it would have shown the same result and he said yes.

 So where do we go from here?  Another stem cell transplant using my own cells (autologus/autograft) followed by a mini one using donor cells (allogenic/allograft) was recommended.  We’ll discuss this at our next appointment which will be with the transplant doctor.

And a definite woo hoo was getting on the scales and being 2kg (4 lbs) lighter than six weeks ago – it looks like that extra walking is paying off.  Although after my sugar binge yesterday – 500ml of Dr Pepper and almost* the whole of a 200g bag of chewy sweets that might change.

* I forced some (one or two) on B and Bud so I couldn’t be accused of consuming the whole bag but even so B was heard to say ‘Have you eaten ALL those?’ – mind you I think he might have been talking to Bud.

WANTED – Stem Cells for Stacy

I copied and pasted this information about Stacy from the MinnesotaMyeloma blog from Karen’s blog (sigh, I’m getting so lazy).  Please feel free to copy this to your own blog, Facebook page, etc. Stacy is in her 30s with two little girls, close to WCK’s age (Karen’s really funny daughter and just in case you come here for my craftiness or shining wit – leave that sh and w where they are, thank you – WCK stands for World’s Cutest Kid).

Stacy Needs Your Stem Cells

Stacy is a young Minnesota mother with myeloma. She has tried just about every treatment, including an autologous transplant, but her aggressive myeloma will not relent. She has a Caring Bridge site.Stacy’s doctors want to do an allogeneic transplant, hoping that stem cells from another person, a donor, will give her a brand new immune system which will view her myeloma cells as invaders and will destroy them. This is called the “graft versus myeloma effect” and can sometimes provide a long-term remission.

So far, though, the doctors have found no matching donor.

The web site www.marrow.org* gives guidance for registering, and information about the actual process of donating stem cells.

From the web site, some of the donor requirements:

  • Age 18 to 60.
  • Good health, including NO CANCER.
We who have myeloma are not eligible, but many of our caregivers, relatives, and friends may be.According to the web site, the registration procedure involves a swab of cheek cells, to be done at home. Once registered, a person could be “matched” to anyone with a need. If an opportunity to donate is presented, a person can accept or decline it.

*In the UK the equivalent service is The British Bone Marrow Registry which is a division of NHS Blood and Transplant and which forms part of the International Donor Register.  There is also Anthony Nolan – I tell you this because I am always completely honest with you and therefore I feel the need to say that if you register with the NHS they require you to be a blood donor too (you can do it as a one off) and they take a blood sample for the register at the time of donating – a kind of two for one deal!  
Having donated my own stem cells (to myself) I can confirm that the procedure is generally untraumatic (I managed to spill a cup of  cool tea over my lap) and relatively painless.  Stem cell collection from the blood is just the same as giving blood except the stem cells are extracted and then you get the blood back after it’s had a short trip through a machine – not long enough for it to send you a postcard, bring you a holiday gift or even buy a ‘Kiss me quick’ hat.  

Regrets – No I can’t say that I have any

A while ago I mentioned that with myeloma you get a whole new set of significant dates that join your birthday, wedding anniversary, etc.  One of mine was yesterday, 6 May.  This was the date that I got my stem cells back during my stem cell transplant last year.

Now as you are aware, unless this is the first time you’ve ever read my blog, we didn’t get as much mileage out of that as anticipated.  My paraprotine (M-spike) registering in blood tests on 31 December but not sufficiently to quantify at that point and becoming a much more measurable 15 by 14 February.

When I had my stem cells harvested and right up to my transplant my paraprotein level had been zero an ideal position to be in one would think.

Looking back would I have done anything differently?  Would I even have had the transplant at that point in time?  Yes and yes.

Yes, I would have had the transplant because it is was the best proven way to obtain a longer disease free progression.  If I hadn’t we would certainly have been looking back and saying that the reason the myeloma had staged a comeback was because I hadn’t gone down the transplant route.  Having done it we can at least say we gave it a go and it didn’t work for me.

Yes, I would have done things differently.  I wouldn’t have gone back to work full time.  Even though I worked only one five day week between the end of August and the beginning of February I was working 9.30 until 18:00 on the four days I did work with commitments on my day off.  We got Buddy, which I don’t regret for a millisecond, but this added other things to do and I aimed to walk him twice a day.  And I admit it I did feel overwhelmed at times.  Then I put myself under pressure to do a handmade Christmas, which I have done in the past, but maybe it was too much in the circumstances.  I also had other commitments that I tired to cram in as well.

By not giving in to the myeloma, by attempting to do everything I would have done before and trying to make up for not being able to exercise like I did, by not taking it easy maybe I allowed it to sneak through weakened defences when I got the stomach upset and ear infection.

I don’t know.  I do however know that it’s a fine line between not letting it stop you living your life as much as you want to but yet not living it so much that it causes you harm.

Since being forced to take it easy during the two weeks in hospital and the lethargy that accompanies some of the treatments I have had very little bone pain.  I know I have previously stated that I had no pain it was more discomfort and it was compared to how it had been but know I truly know what it is to be pain free.  I wake up on my back some mornings not because the ‘discomfort’ has woke me up but just because it’s time to wake up.

It is hard to set yourself new limits, especially I think at an age when you shouldn’t have any, but having experienced life almost pain free (with the aid of paracetamol and codeine) and feeling better for doing less, it is worth it.

Full Disclosure

Courtesy of Mike I now have internet access.  So here is an update of what I’ve been up to in the intervening period.

We got home on Friday 4 February (which now seems an age ago) to find a couple of letters from our GP pushed through the door saying ‘ring me and then get yourself over to the Royal as your counts have dropped from normal range on 31 December and there is the underlying temp.’

WBC – 3.3

Platelets – 102

HB – 7.9

So after a night on the Medical Assessment Unit with maybe an hour’s sleep, a couple of hours on Saturday on some wacky side ward that you had to be there to believe, four days on a gastro ward and so far five days on blood ward, two chest x-rays, an ECG, five canulas, umpteen blood tests – regular counts, PP levels (which didn’t give an actual PP level but the lab said it was contained within the IGA level of 18) and all sorts of cultures, wee tests, three units of blood, quite a view IV antibiotics and now tablets, numerous temp spikes – it managed to get up to 40 on Friday (and the nurse has just noticed when my temp spiked just that for the last four days it has done it at a very similar time) and a bone marrow aspirate/biopsy (didn’t feel a thing – well nothing painful or nasty) the general opinion is that pending the results of the bone marrow biopsy, as nothing else has been absolutely unequivocally  conclusive, it’s the myeloma.

The doc I saw yesterday, who we’d seen before my SCT, said he was sorry and I asked what for as it wasn’t his fault.  He said because it wasn’t that long since my SCT.

I informed him that if I needed treatment I didn’t want to take dex again as I had zero quality of life on it and B’s and family/friends’ was hugely affected too – it/I was that bad.

The doc this morning said it was likely I would need treatment and it would be Velcade.  He also said, and yes I know it is immodest to share this but hey I have a temp so I don’t care, that he admired my attitude and I was brave.  I said that that being miserable wasn’t gonna fix it unless he thought otherwise and you just had to get on with things.  They will however in the interim keep looking for an infected bug.

And apparently I have the audacity to look well and feel merely lethargic generally and sleepy when my temp spikes – I said I always have to be different but I’d see what I could do about feeling ill for tomorrow’s rounds.

 

Vaccination Time

I have a serious post, no seriously, I do!  I DO!

I had a visit to the nurse at our doctors last week re a woman’s er, three year thingie, screening do hicky and she said that they’d had a letter about my re-vaccinations.

I had considered not having them but I hadn’t really looked into it and naiviley thought it was the ones I remembered like measles, TB and the one on the sugar cube.

Apparently it’s not it’s the following

Pneumococcal – pneumonia, meningitis and blood infections

Haemophilus influenza conjugate – meningitis, bacterial pneumonia, and infections of the blood, bones, and joints

Diphtheria, tetanus and acellular pertussis – well that would be diphtheria, tetanus and it turns out whooping cough

Inactivated polio (I wonder if this is still on a sugar cube – probably not, someone would get sued for rotting teeth)

and then annual vaccinations for both me and B (HAH) whilst I remain immunocompromised of

Inactivated influenza

So I would like your opinions – have you, haven’t you, do you intend to if you are in that position or even if you’re not your views on vaccination.  You can either leave a comment or if you prefer to do it privately in case you just want to say ‘For goodness sake woman just get them done – don’t be a baby about it!’ (Get it – baby, as they are for my new baby immune system and the letter says I can have the neonatal brands!) my email is feressaattenuata@yahoo.co.uk.

And remember this is serious – there may be lollipops riding on it if I get them done and am a good girl whilst having them!

 

 

 

Blood results and a dodgy chicken

Off we went to the Royal on Friday for the latest blood sampling.  It was bedlam.  After a relaxing hour away from the waiting room getting a coffee we came back to find it bursting at the seams!  An announcement informed us they had no ICE, well that’s okay we just had a hot drink, unfortunately it turned out not to be so simple and ICE was in fact the computer system so they had no blood results without someone physically going to the lab to get them.  As an old boss used to say ‘Computer ARE fantastic WHEN they work!’

Now I don’t mind waiting that much (B on the other hand is another story), once I’ve established that the strangers near me don’t appear to have anything contagious or smell I’m quite happy to get my knitting out!  We weren’t actually there that long but didn’t get to see a Professor, no Professor – I feel a strongly worded letter coming on!  We saw a young doctor who we had seen once before and who despite being hounded and harassed several times during our time with him and apologising profusely for this put in a sterling performance when faced with my questions and only once came close to putting his head in his hand to regain his composure!

Soooooooooooo the good news is that I am quote ‘in complete remission’.  I am in as good a position as could be hoped for at this stage after transplant.  (He did used this expression last time we saw him but I guess you just can’t hear something like that too much although I think he may be slightly superstitious as he did touch his head!)

HB – 11.9

Platelets – 240

WBC – 4.7

Para protein – 0.0!

However I am immunosurpressed (I don’t think you can tell by the way I walk) and it is too soon to tell if this is a temporary result of the SCT or a permanent effect of the myeloma – so I’ve told B that this means I can’t go anywhere near his mum’s tea towels!  This could explain the cold I’d had for ten days at that point but the doc was satisfied that it was getting better.

B commenced our round of questions with

‘So can we come back in three months now?’

Doc:  ‘Well eight and then we’ll see.’

So we go back in eight weeks to see the doc but for the blood test one week before so the PP levels are up to date.

However last time we went I raised the subject of Zometa and its anti-myeloma affects.  The Prof said it was up to me but I should consider the downsides of inconvenience and potentially  more damage to teeth than Bonefos.  I also asked about Thalidomide maintenance therapy and was told he would raise it at the meeting after clinic.  This was discussed and apparently this isn’t offered routinely at the moment as although it improves disease free progression it doesn’t increase overall survival which is what I’d read.  However the young doc stated that Zometa had been proven to improve overall survival and without a by your leave said I should switch.  So we’re doing that.  So no more tablets – YAYYYYYYYYY!  No more, I can’t have a midget gem at 23:30 because of taking my Bonefos.  (Well no more ‘official tablets’ I ‘voluntarily’ take curcumin, flaxseed, glucosamine and chondroitin.)

B had so been looking forward to three monthly appointments and now we are down to four weekly Zometa trips in addition to the three month appointments!

Now both the Zometa and the pre-appointment blood tests, obviously require a trip in the car and B didn’t say anything about this at the time and therefore I assumed he was satisfied I could go by myself – IN THE CAR, BY MYSELF, TO LIVERPOOL.  Sunday however he felt the need to broach the subject – he will be accompanying me – for the company of course!  I will have to get him to accompany me to a museum or art gallery and then we can see how long it is before he trusts us (the car and I) to go by ourselves.

I also asked for confirmation of what type of myeloma I have – yes, I know, more than 12 months after diagnosis but obviously this is one of the reasons we swapped hospitals.  I had seen what I thought was IGA on a set of blood forms but you know what doctor’s handwriting is like so it was hard to be definite.  After the doc confirmed it was IGA I asked if this made me susceptible to certain types of infections over others (all in the midst of beepers and nurses with files, and B asking what the difference was and if it was better or worse to have a rare form of a rare disease but being reassured that the treatment was the same regardless I was so impressed at one point when he had to answer a beeper and was able to come back and carry on from where he left off) apparently it doesn’t – it’s not that straightforward – however if you have IGG you can get a top up of antibodies via infusion should the need arise.

After wishing the doc a better afternoon that the morning he was having and as Friday was a lovely day we decided to take a little trip into the city centre for lunch, via a fabric shop where I found just the fabric I was looking for curtains for my sewing room, just perfect, JUST what I wanted, except I wanted it for way less than £17.50 a metre!  So needless to say I will have to rethink that one.

So we vent to ze little French bistro for ze lunch.  However my little English tummy had been a little temperamental following a shop bought but freshly made sandwich last Tuesday.  It had settled down  but took exception to the chicken main course.  Now I can be a little bit funny with dead things on my plate.  I don’t know if it’s because I was veggie/vegan for a number of years but I generally don’t like what’s on my plate looking like it could have once been a living something.  This has become increasingly so since my SCT.  In fact we had ‘chicken gate’ a few weeks ago.

I decided it would be a good idea to get an organic chicken, a dead one obviously, and I cooked the chicken and made two meals from it.  I then decided it would be an even better idea to use the carcass for stock for soup.  Big mistake.  I took the lid off the stock pan and gagged.  I walked away from the pan and came back later and, did you guess, yes I gagged.  So B drained the stock and I cooked up some broth mix, B stripped the carcass and added the chicken bits and it was VILE!  It was the sort of culinary disaster that is reserved only for my baking endeavours (which are either excellent or unrecognisable as any sort of food stuff).

So I vas sitting in ze little French bistro (where there was no music in the toilets but a recording working through the alphabet and zaying ow to pronounce zings in ze French) having thoroughly enjoyed my entree and then the chicken landed.   SPLAT!

B offered to swap for his pork steak but by then that wasn’t looking too appealing either.  So after five minutes of deep breathing I approached the, well to be perfectly honest I’m not too sure what one bit was – there was definitely a drum stick – but the other may have been the top part of the leg squashed, some underlying area – I really don’t know, but I took the skin off and the meat fell off the bones so it seemed done but it was all dark meat which I wouldn’t normally touch with someone else’s fork.

For the next ten minutes I pushed stuff round my plate, eating the odd snippet but by then even the veg was unappealing and I was so looking forward to the ginger and passion fruit cheesecake and couldn’t even eat all that.  That also somehow managed to look like I’d left more than I’d received much to the consternation of the waiter.  And am I alone in thinking that waiters with ze thick accents probably sound as French/Italian as I do when they set foot out of the restaurant?

Following the chicken I ended up being unable to eat my Indian takeaway on Saturday, my lunch on Sunday, tea a friend made on Sunday night by which time I was feeling decidedly ropy and couldn’t wait to get home to bed which is unlike me, and finally up-chucking in the wee small hours of Monday morning and spending all Monday on the settee mostly asleep!  In fact in the world record of not betting off settees I managed to stay on the settee from the time B got up until he went to work!

I am however feeling considerably better today and am sure it’s impossible to get tired of dry cornflakes!  Isn’t it?

Stem Cell Transplant Holiday Packing List

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.

Toiletries

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

Clothes

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!

Food

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

Cottage pie

Lasagne

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

Hospital shakes

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)

McVities Digestives

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

Entertainment

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’

Other Stuff

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!

With a husband like this who needs a fancy man?

Yesterday I commented on the blog of a lady who has recently come home following her stem cell transplant.  Her post was about how she would change as a result of this and MM, the old and the new.  My comment was kind of about how it’s the potential to do things that goes AWOL – like I’ll never be able to climb Mount Everest (disregarding the waiting list) due to the physical input involved on my part.  It’s highly unlikely even at my fittest that I would have even contemplated it anyway – but I could have done.  However there are ways round things – I really shouldn’t run for a bus but I passed my driving test in March so now I don’t need to.  And of course there’s the fact that assembling IKEA furniture isn’t quite the same but we got shelves in the end.  You adapt and survive, semper fi, who dares wins (either SAS or Trotter style), woo rah and all that and then this morning…

I opened my sleepy little eyes this morning just after 10:00, which is late for me,  B was already awake, not out of bed I would point out, but awake.

B:  ‘You’ve had a long sleep.’ (I’d gone to bed about 0:10.)

Me:  ‘Why, what time is it?

B:  ’10:10 but you did do a lot yesterday.’

Me:  ‘Not that much really.’

B:  ‘Well not compared to what the old Paula would have done, but enough for now.’

Me:  Well, what I said isn’t really suitable for public consumption.

*  Whilst I was checking a motto I came across this one which I just couldn’t keep to myself

“DON’T RUN, YOU’LL JUST DIE TIRED” – JFK Center for Special Warfare, Sniper School, Ca 1976

Look at my New Keys

Okay you go on SCT ‘holiday’ and mislay your keys.  So your husband finally decides its finally time to get new keys since they are highly unlikely to turn up because you have now emptied the drawers they could have slipped into including your draws drawer.  You even get a new keyring…

Bart’s not gonna take his eyes of these keys – you can see he is already getting a little hot under the collar from the pressure.

The strange thing is that apart from the two front doors keys which we decided against getting for two reasons, B wasn’t too sure from his keyring which was the inner porch and the shop was closing in less than five minutes, I had about 10 keys on my old key ring – but now have no idea what on earth they were for!