Category Archives: stem cell transplant

Blooming ‘eck

Last Thursday when I went for my PICC line care I asked if the shingles thing would delay the next cycle of Velcade and Doxorubicin due to start this Friday.  When I subsequently spoke to the haematology pharmacist on Friday it turned out that I would need a clinic appointment on Friday in order to begin the next cycle anyway.  My clinic appointment had come through for 20 May.

On Monday the pharmacist rang to say that I now had a clinic appointment on Friday and as, from my description, it sounded like the shingles would be well and truly cleared up by then we would probably be able to start cycle four, this being the last one.

However the clinic appointment turning out to be this Friday rather than in an extra weeks time has caused a tiny bit of an issue.  I intended on sorting out my list of questions relating to a donor transplant to ask at my appointment and basically other than the initial questions which popped to mind after my last one (about three) I haven’t as yet compiled a full and exhaustive list.

I asked B if he had anything he wanted to know and he informed me today that we would go through my list of questions tomorrow – so that should take all of 30 seconds then.

However although I don’t have a list of questions that could affect a life or death decision (wow bit strong but I guess that is basically the top and bottom of it, or at the very least a life pro-longing decision with the slight chance of the ‘c’ word – cure – depending on the donor cells) I do have this…

Yes, its a tea cosy.  Not for us, since our tea pot, which had to be brought down from the back of a top shelf looks like this…

I had to remove it’s top for photographic purposes and shoot it from above as it was still showing it’s bottom!

One of the sisters from the Day Unit at the Royal was making a couple for her cousin to put in the Marie Curie shop she manages as she is having a tea cosy bananza in June, I think.  I had previously provided some wool for a loopy sheep pattern she was doing – aren’t I good?  Well actually I was given the wool by a neighbour, so, not really but when I needed a small knitting project I thought why not do a tea cosy. The pattern for which was free and can be found here.

I’m not too sure how well this will go down on Friday…

Prof:  ‘Do you have any questions?

Me:  ‘Yes, do you like my tea cosy?’

Don’t Woo Hoo in Tesco

‘Are you on your own?’ asked the Prof.  

‘Yes, this is the first clinic appointment Bernard has ever missed.’ I said, thinking do I need someone with me?

After B asking about my paraprotein level he missed being told the news. Although I don’t yet have my PP figure, my IGa which was 18 on 11 February is now 0.44!  WOO HOO.  Although I didn’t feel so much like woo hooing by the end of the conversation as I ended up a bit dazed and confused. 

I heard once that a good number of patients either do not remember or misinterpret the information supplied by their doctors.  I have never considered myself one of these, I mean I take a notebook to jot down pertinent points for goodness sake, however this is what I remember the Prof saying…

We met before when I graciously acquiesced over the steroids.

These are two medical students from Hong Kong, where I go to teach sometimes.  Do you mind if they sit in?

Can I call you Paula?  I feel old enough to be your father.

You’ve tolerated the medication well

This is your IGa (swivel of computer screen).

Do you have any brothers or sisters?

We will have put you on the international donor register.

You will see me from now on.

I propose two further cycles of Velcade and Doxorubicin but over four weeks instead of three so you will get an extra rest week and then a donor transplant.

WTF?  No, that was me not him and I didn’t actually say it out loud as such but it did surprise the sass out of me briefly, although I managed to ask if the students reported back on him when they got home.

What did you think would happen?

I’d have eight cycles of Velcade and if that worked we’d leave it alone. (Don’t trouble trouble as a friend says.)

In view of your age it would be wrong of me not to mention a donor transplant.

WTF? – again!

There is no point doing a second transplant with your own cells in view of the results of the first one.

You will/should have a donor stem cell transplant.

Ultimately though it is your decision.

I’ll see you in four weeks.

And although I did have my mocha and Eccles cake alone I got to enjoy the conversation of two elderly ladies at the next table – apparently one of their friends had paid £1,000 for a porcelain sink over part of which she now permanently drapped a tea towel so it didn’t get damaged and it was nearly handbags at dawn over who had the bigger house – and B arrived in time to take me for a late lunch.

Oh, and B decided he’d like to treat himself to a bag of fresh cookies from a little Tesco on the way back to the car.  They didn’t have what he wanted so as he was selecting I suggested he may want to go wild as we should be celebrating and woo hooed a little bit too loudly for the man further down the aisle who didn’t stop staring at me until I was past him.

 

 

 

Re-vaccination can be hazardous to your…

domestic bliss!

Well after some thought – ‘we’ decided to go ahead with the vaccinations although this has proved to fraught with problems.  Well, the problem being B is a bit of a wuss!  Neither of us got wowwipops for our troubles or even a denture clean tab (I am of course making a sweeping generalisation since the flu shot is offered to those over 65 and am assuming that this means dentures).  We however went from one end of the age spectrum to the other – an infant shot for me (pneumococcal) and a pensioner flu jab for the pair of us.

Two of the things that confirmed the decision to revaccinate and which were mentioned to me were travel and the reduction in the number of people vaccinating – that and the fact that some of you caregivers out there were adamant that the caregivee was getting them whether they wanted them or not!

I realise that in the north west of England it is unlikely that I will come across diphtheria or whooping cough BUT and this is a big BUTT – we have travel insurance and we’re not afraid to use it!  By a complete fluke and with my diagnosis coming not quite two years after my first trip aboard, to Oz, the travel insurance we took out at the time with our household cover is still in place and as long as my doctor says that I am fit to travel both me and the myeloma are covered for trips abroad for up to 60 days anywhere in the world.  We sadly do not have cover for winter sports but since I would be the one to say ‘Let’s go ski-ing! let’s go ski-ing!’ as many times as a five year old after sweets until B gave in – ski-ing, snow boarding and maybe even ice skating can safely be ruled out since last week on taking Bud for a walk in our light dusting of snow I got a ‘Be careful with your leg!’ warning.  So since B had said this I had to be careful because there is no way I am prepared to put up with years of ‘Remember when I told you to be careful with your leg and you broke it!’

So back to the jabs – my arms were a tad sore – well if I prodded and poked them hard enough – meanwhile B’s left arm seemd a little more tender.  This may, or may not, have something to do with being punched (it was a love tap) in the jab location – several times.

Hey, look I forgot!  Friday night there we were both are at the laptop playing a game and it was past my bedtime and I MAY have been a bit grouchy and the playful punch to the arm wasn’t quite as playful as usual and I MAY have had to compensate since I was throwing the punch with my left arm as I didn’t want to risk causing myself pain with my right (cos my wrist is still sore) but B MAY have over-reacted slightly.  I went to bed!

Then Saturday morning – I need to set the scene – we were sitting on the floor eating our breakfast in the lounge and we have French doors in the middle of the window which enables Buddy to get a view of his garden.  His garden, where, over the past few weeks, he has discovered other things call round to visit – a squirrel, wood pigeons and he’s even interested in the little red robins that bob bob bob along, and this little stoat like small furry animal – okay I admit Miss Wildlife here thought the first and maybe even second time that this was a funny looking baby squirrel with an unusual black bit at the end of it’s tail!  I can however recognise a wildebeest, a lion and possibly even an elephant – I don’t think David Attenborough’s done a garden wildlife show.  So last Saturday morning doesn’t that little critter put in an appearance and show that it really isn’t any sort of squirrel at all.

So Bud is stood looking out of the doors, ears pricked and making funny noises and I said…

‘It makes my heartache to think of him wandering the streets on his own with no-one to look after him.’

B:  ‘He’s only a dog!’

Second punch to the arm.  B cries out and Bud turns round to see what’s going on, comes on over to investigate why B is clutching his arm and on his way stands with one of his front and then one of his back paws on B’s er, um, general delicate manly region!  Double uuuuooooofffff from B and that was my fault too!

Once B had regained the ability walk and whinge at the same time we took Buddy out for a walk.  Now I can’t remember why but during said walk where I tend to be on B’s left (sore arm side) I had cause to give him another little love tap which resulted in me concluding the rest of the walk on B’s right (poop scoop bag side) so I was a good girl from there on in!

Fortunately I get to have 12 months free of B having another jab and then only if I’m still immunocompromised – the other 12 revaccination shots I get to have on my own.

I just realised that I abused my husband three times in less than 24 hours – if it suddenly transpires that I haven’t blogged for a while will one of you check the local police station and then come bail me out?

 

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!

 

 

 

Hair Today

How you know you have a full head of hair of a reasonable length –

Children no longer stare – girls when it was bald and boys about yay big… ooops hand gesture – about 8 to 10 when it was a number one (ie, there but very, very short).  B would chuckle and I would turn round to find a small boy or boys (in the case of two brothers when one nudged the other to look) staring.

Obviously a little confusing – ‘Why has that woman got a skinhead?’

And you no longer hear conversations like this…

Mum:  ‘…because some women don’t have hair!’

Son:  ‘But you’ve got hair!’

You have longer hair than the short haired furry animal you acquired.

You have to wipe it twice with the towel to get it dry.

You can feel the wind in it.  This feels odd the first time – you have to be walking into the wind but you can still feel it in your hair rather than a draught on your head.

However the one undeniable confirmation that you have hair is when, after months of getting up and getting dressed to go out without giving your hair a second thought you happen to glance in the mirror before you leave the house on day and… you have bed hair.  It may have only been five strands sticking out funny the first time but it was bed hair!

 

 

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!