Bunny cake!

As my nephew turns one at the start of May it was only right that we made him a cake. Fortunately, mu Mum was on hand to help as I'm recovering from some strong IVs  so was not up to doing an awful lot of baking.  As such, we did the baking of the cakes in the morning, then I had a rest and did the decorating in the afternoon.  The idea comes from Mary Berry's Baking Bible- a book full of recipes that I've yet to find a dud in.  It's made from three round sponge cakes, one nine inch for the body, one eight inch for the head and another eight inch that is cut up to make the tail, ears and feet. These were then all arranged on a foil covered tray.

This as then covered with a lot of butter cream- it uses a pound of icing sugar!  I left it plain for the tail and managed to make a sort of fawn colour for the fur with food colouring.  I fluffed the icing up a little with a fork to look like fur.

The eyes are made from white and milk chocolate buttons, the nose is a jelly sweet and the whiskers and mouth are chocolate sticks! Because I don't believe in doing anything by half, I finished it off with some grass and flowers made from royal icing.  I'm not sure that at only one James will really appreciate it, but Sophie definitely will!

Temporary reprive...

Well, I'm back on the 'normal' ivs, dull, dull, dull, but I am not to be hauled into Papworth for three weeks just yet... The consultants have consulted, and decided that at the moment they don't think it's worth subjecting me to the treatment regime for the micro bacterium as they want more evidence that I actually a colonised with it before they do that.    Now I am fairly pleased about this, but I am still getting a very large sense of deja vu, as I was told the exact same thing a couple of months ago.  However, I subsequently got another positive result and the whole saga started off again, so in this instance I am not holding my breath... It is fairly obvious that this situation could reverse itself as easily as falling off the proverbial log so until I've had a good few more negative cultures I will not be hanging out the bunting and opening the champagne.  I've also managed to grow another unheard of bug called Chrysomanes indologenes!!! (no idea if I have spelt that right).  It is apparently not something to worry about as it doesn't cause problems, but how on earth do I manage to pick these things up?  I'm seriously considering wearing a hazmat suit at all times as I just seem to be collecting weird bugs at a great rate and I am getting a bit fed up with it!

Going round in circles, crocheting as I go!

I must admit to an overwhelming sense of deja vu... I am pretty much exactly back to where I was in October (after I had my first rubbish sample of some sort of micro bacterium), waiting to get some other sort of result that would give enough evidence to justify me being incarcerated at Papworth for three weeks and starting a massive regime of drugs to treat said micro bacterium.  This time they have at least identified the type of micro bacterium, but the doctors still are very wary of starting me on this unpleasant roller-coaster of drugs.  I can see why its such a hard decision, I really don't want to have to do these extra drugs, but it does rather leave me back in limbo- again!  So, I am trying not to worry and fret myself into a total mental collapse and hoping that either I get a nice obvious reason to do all this stuff or that the various teams involved decide that I am not colonised and can still be assessed for transplant when I need it... Like I said in the last post, I'm not good at waiting...

I find that one of the best ways of distracting my troublesome brain is to keep my hands busy.  I've just had another two weeks of what might be called 'normal' IVs, to treat the pseudomonas that regularly upsets my lungs.  These drugs won't treat the micro bacterium, so they should not be affecting the results of the samples I am sending off.  Whilst I'm on them tho I do feel rather like I've been run over by a steam roller and am just knackered.  This gives me far too much time to brood and worry, so I've been keeping myself busy with more crochet and also more embroidery designing with the new software and machine I've got (more on that later when I've got the hang of it!).  I've been gradually crocheting a blanket made of hexagons for several years now... I do a few here and then stop for a bit to do other things, then I come back and do a few more.  Well this dose of IVs I decided to get it a to a point where I could stat putting it together but can can still add more hexagons on later.  I've now got at least 12 of each of the nine colours and will be starting to crochet them all together with white yarn as I've worked out a layout I am happy with.

Many, many hexagons to be joined together.

Because I tend to get bored with repeating the same shape and colours, I have also been working on a yarn-eater blanket, to try and use up some of the yarn scraps I've had hanging around taking up space.  I really like making granny squares so that was an obvious choice. I was rather inspired by a blanket made by my great-grandmother which is made in amazingly bright colours, in clashing combinations that I really love.  So I decided to do a version using slightly smaller squares, only three rounds in different colours.  So far I've done nearly 50 squares and as you can see it's very bright and over the top!  I like the fact that the individual motifs are so quick to make, so you can just knock one up whilst having a cup of tea and have something to show for it immediately.  I will carry on making loads of squares until I run out of colour combinations, then will join them altogether with black.  If I get stuck in Papworth for three weeks I think I could manage an awful lot of crochet...

The Waiting Game...

I hate waiting. I've never been particularly patient with anything, but where my health is concerned I'm fairly useless.   I like to know what is happening and what the plan is and why I am doing the treatment.  So having to wait whilst the docs decide if they think I should have the treatment for the micro bacterium is just hellish.  The treatment is seriously tough- three weeks in hospital  on four IVs and extra nebulisers. And ts not on the cf unit because of cross infection issues.  So whilst I will be in an en suite room (I'm not allowed on a ward thank God!) it won't be the super nice new ones on the unit and I will have to deal with non-cf unit staff; who with the best will in the world are not as good as the unit staff and do not have anywhere near as much experience in dealing with cf patients and our treatments.  Then once all that's done it's two years of an extra two nebulisers, maybe three and an extra two possibly three pills on top of what I already take! So whilst I can totally understand and agree with the docs not wanting to inflict that on me based on not much evidence, having that hanging over me is really doing my head in... If it was just obvious that I am definitely colonised with the micro bacterium then I would say fine lets get it over with and have the treatment, which Dr Barker calls 'Domestos for the lungs'. But it's not obvious.  Yes, I've had one clear positive and one sort of weak positive result but the bronchoscopy results have all been negative.  Usually bronch results trump sputum because it is much more certain that the bronch samples are from within the lung and not just something I breathed in from the environment and then breathed out. My CT scans don't have any clear changes indicative of micro bacterium and I've not lost significant lung function, all of which would be suggestive that it's really there.  With such small evidence its not surprising the consultants are having a hard time agreeing what to do with me!

The other problem of course, is the transplant aspect.  The Papworth transplant team are very hesitant about transplanting people who have this bug as the outcomes tend to be rather poor, well actually really poor.  The micro bacterium can lurk in your system in other places and then when you are imuno-suppressed to prevent the transplanted lungs being rejected  it can infect other major organs and cause abscesses-really not my idea of fun!  Being told that having a transplant with this bug present could end up with me having abscesses in your liver, kidneys or even brain was not a fun experience...  So the Papworth team seem very keen for me to have the treatment before they will consider listing me.  The consultants are asking around other transplant centres to see if I would still be eligible elsewhere or if it is a definite refusal all round.  If they all agree that it's a no-no, then that will at least make the decision for me.  I'm not prepared to give up on the opportunity of having a transplant one day cos of some stupid bug and if that means I've got to do this treatment then so be it.   The docs say its fortunate that delaying the decisions for a while won't impact on my health, but I would much prefer to know what I've got to do asap, rather than this uncertainty, I don't deal well with uncertainty. I'm far too good at fretting and arguing with myself and not sleeping- kind of like right now really!. But I'm just going to have to put up with it for a while longer and carry on waiting...

ARGH!!!!

I am so annoyed with my bloody lungs!  Sam, the specialist cf nurse from Papworth rang on Monday to tell me that I've grown a micro-bacterium in one of my last sputum samples....I am furious abut this!  I grew a very pathetic example of one at the end of last September, it was such a tiny sample that lab could not even identify its actual species and it died on the plate before they could! However, I was immediately segregated due to cross infection risks, and had to start sending  about a million more samples off and have a bronchoscopy. All the results came back negative and I was declared bug free.   This was such a relief as having a micro-bacterium is really very serious, they are not easy to treat and get rid of completely and some of them are an automatic disqualifying criteria for transplant.  I've got to the stage where transplant is being talked about more and I even went to see the transplant team in October to talk abut options.  Fortunately the transplant team don't think I am ill enough to be fully assessed and listed for transplant yet, so I do have some time to try and get bug free so when I need a transplant it is still an option - at least that is what I am telling myself to stop outright panic.Its not that I want a transplant now by any means, it is not a cure, but I really do not want to be told I can't have one because of a stupid bacterium.  When the time comes I want to make the decision as to whether I do have a transplant myself.

I didn't deal well with all this stress, not surprising really, it is all rather serious after all. With all the extra stress and annoyance at being segregated and ill, and the fear of not being eligible for a transplant I was rapidly descending into a big depressive spell.  I started seeing the CF Psychologist again (who has been just brilliant) to help me cope with it all, but when I got the all clear it was just such a relief. I could not stop smiling and laughing for several hours after being told and mentally I felt better than I had in months.  It was like a huge weight had been lifted off my head and I could see a future which if needed could include the benefits of a transplant.  Now I've had another positive sample all that weight is back again, and its even worse this time as I really can't pass this second result off as a possible false positive or just a small sample of bug that I breathed in and came out in the sample without it actually colonising my lungs- which was the prevailing view for why it turned up last time and was such a pathetic sample.  One positive result is not considered enough to decide if a patient is colonised with the bacterium, as the treatment is very heavy, arduous and long, so the docs really don't want to put you through it unless they are sure its worth it.  Now I have had two samples come back positive so it looks like I can't avoid the treatment.  I just can't believe I am going through all this rubbish again!  It always knew it was a possibility but I had hoped to have at least a few months off before the next health catastrophe came along...

Crochet blanket for James

One of the annoying things about IVs is that you are forced to sit waiting whilst the drugs drip away. On some combination of meds you can by stuck for an hour for each drug, so you spend several hours a day attached to your drip stand (or handy light fitting!) being very bored.  I hate being bored and sitting around- drives me nuts! So to pass the time and do something useful I decided to do some more crochet and as I'd made a blanket for Sophie when she arrived it seemed about time nephew James got one too.  I've never been able to manage knitting, my stitches always got so tight I could never get the needles into the work! Crochet is a much better bet and I rather enjoy making lots of small motifs that then get seen together to make a blanket.  The blanket i decided to make consists of 35 granny squares in two colours.  I found a really nice acrylic yarn that came in red and cream; I can't use wool yarn as i am mildly allergic to it and it makes my skin red and itchy. This is really annoying as most yarns contain at last a small percentage of wool so my choice of yarn is pretty limited. After three weeks of IVs I'd managed most of the squares and i finished the last few this week.

Very large pile of squares!

Blocking the first batch of squares.

Having made the squares I then had to give them a block to get them nice and flat and even out their size.  My tension is still a little bit hit and miss and some of the squares were a bit different in size.  By pinning them all out onto a board and giving them a gentle steam and then letting them cool you can even out any little lumps and bumps and get each motif to be nearer in size.  To join the all together I used a slip stitch in red wool to make a fairly invisible seam.  I'm really pleased with how it turned out and I hope James will like it too.   Now I have to decide what my next sedentary project will be, as sadly I think Ill be back on the IVs shortly... at least I can make something fun and useful to alleviate the boredom!

Midway through joining all the squares together.

All joined together just the ends to weave in.

Finished!

Too much chocolate!?

Not possible I hear you cry! Well, I think I may have put a bit too much chocolate into my fudge as it is not really structurally strong enough to cut into lumps, it tends to fall apart! Perhaps then it is not a case of too much chocolate but of not enough everything else... It does taste great tho, so its not really a problem!  I based it on the same recipe that I used last time for the vanilla fudge, only I left out the vanilla pod and replaced it with 200g of Bournville.  The method is also the same, but you stir in the chocolate at the end instead of the vanilla.  I was using my new sugar thermometer which has the various points you have to heat the sugar to already marked on it which makes it a lot easier to use. I chopped the chocolate up really small so that it would melt in easily to the hot sugar mixture, however I think that because I used a lot of chocolate (always a good thing) it lowered the temperature of the sugar mix a bit too quickly so it started to solidify really quickly and the chocolate didn't get totally incorporated which is why the finished fudge has a slightly swirly appearance and possibly why it crumbles quite so much...  Next time I am going to try melting the chocolate before I stir it in so that the temp of the chocolate is similar to that of the sugar so it doesn't go solid quite so quickly and I don't have a mad panic trying to get it into the tin before it welds itself onto the bottom of the pan!  My next experiment will also involve adding some instant espresso powder in make the flavour more  chocolaty.  In lots of my recipe books espresso powder is often added to chocolate cakes or puddings, as the coffee flavour helps to enhance the chocolate and make it less sweet and more intense. Another good reason to keep experimentng with fudge.

Ingredients

Boiling nicely

Into the tin, still warm

Cool  and ready to remove from the tin.

Rather swirly.

Falling apart whilst chopping.

Really crumbly!

Crumbly but delicious!

Fudge!

I've always fancied making fudge but have never been quite brave enough as boiling sugar could be a risk to life and limb! But I decided to be brave and try it out after reading the lovely, and very reassuring chapter on sugar in Dan Lepard's book Short and Sweet. A basic vanilla fudge seemed the best place start, and also vanilla is possibly my favourite flavour, although chocolate gives it a run for its money! A brief description of making fudge- fudge is made by heating sugar , milk, cream (or evaporated milk) and butter to a specific temperature 116c or 240f sometimes called soft ball stage, then adding flavouring and nuts etc if you want, then allowing it to cool again, all the time stirring like a demon to stop the sugar burning on the bottom of the pan. Sounds easy! I took lots of pictures on my iPhone whilst stirring away, so this is a sort of photo story of my first attempt at fudge making.  The photos are not amazing as stirring with one hand and taking pictures with the other is not all that easy...


Fudge ingredients

All in the pan and ready to go.

Dissolving the sugar and butter into the evaporated milk and full cream milk.

All dissolved.

Starting to bubble and boil.

Boiling away nicely and expanding in volume.

All boiled and stirred and ready to put in a tin.

I lined the loaf tin with foil to make sure the fudge did not stick whilst cooling.

After cooling the fudge is ready to turn out.

Ready to be eaten, but should probably cut it into smaller pieces...

First cut it into fingers...

...then cubes.

Fudge pyramid!

Whilst making the fudge I found it amazing how much the sugar boils up as it gets to boiling point and beyond, so you do need a big pan or you'll end up with sugar all over the stove top... I used our stock pot and was very glad it was so big. It helps to have everything ready to just shove in as if you stop stirring for long the sugar catches really quickly and will burn before you rescue it. Having a sugar thermometer is also essential as until I have lots more experience in fudge making I cannot judge by sight when the fudge has reached the right temperature. You can drop a little bit of fudge into a glass of water and they should sink to the bottom and form lumps. Then if you dip your fingers into the water and squish the fudge it should be a 'definite ball of toffee', sounds fine in practice but I didn't have a clue so stuck with the sugar thermometer! Also resist the temptation to stick you finger on the sugar mixture... It's blooming hot and you will burn yourself badly...  Another fudge tip is that when you are finished don;t try and scrub the inevitable sugar deposits off the bottom and sides of the pan, but fill the pan with boiling water and replace it on the heat and give it a good boil.  This will dissolve all the sugar into the water and once you pour the water away (carefully!) you can wipe anything left off really easily! Much better than elbow grease and hard work :-) I was really pleased by how my fudge turned out.  It was really vanillary and smooth and soft with no lumps or grainyness.  It also got eaten very quickly, so I shall be trying more of this and more flavours soon.

Beware fudge stealing fingers....

Stamping biscuits

Well three weeks of IVs and a couple of nights in Papworth are finally done and finished and I can get back to baking and sewing and nice non-cf related stuff.  Mr EB got us a new oven for Christmas and at last I got to bake with it. It's a John Lewis, lovely, boring, standard oven with a normal door, a window I can see through and a working light- bliss! And no more burning my arms! (If you are wondering what I am going on about then see my previous post.)

A normal oven - at last!

I recently bought a biscuit stamp from Hobbycraft (I cannot manage to go into that shop without buying something!) so I thought I would try it out with my new oven.  I used a recipe for refrigerator biscuits from my Leith's baking bible, as to stamp patterns into a biscuit you need a recipe that doesn't rise too much or spread as the pattern will disappear. This recipe has no raising agent in it so it seemed like a good place to start.  It's very buttery which does make it rather sticky, so by the time I was finished the kitchen was liberally sprinkled with flour and icing sugar to reduce the dough sticking to everything.   I made the biscuits in two batches as the butter in the dough started to melt a soon as it is removed from the fridge.  The first batch I stamped in the way recommended on the stamp's instructions.  You roll the dough into a golf ball sized lump that you flatten a little, then stamp flat. It's quite difficult to get them all the same thickness as unless you make each ball exactly the same size they all come out a bit different, and I was not on the mood to weigh them all and adjust so the results were a little non uniform.  


Batch 1 - ready to be cooked

Edges are a bit rough, but the message is clear!

Batch 1, fresh from the oven.

The first batch did spread a bit, as you can see from the picture above.  I know I got the tray the wrong way up to read the message before anyone points it out!  However, as you can see from the close up below it is fairly legible.

With the second batch I tried a slightly different technique. I rolled the dough out and then stamped several biscuits and cut round them with a knife. It would have been even easier with a round cookie cutter but non of mine were the right size. I did the last two as stamped golf balls as the dough had warmed so much by then that it would not stop sticking onto the rolling pin... I also re chilled the stamped biscuits on the baking sheet for 10 minutes or so to firm the dough up before I baked it so it didn't spread as much as the first batch which I think did actually help. I do think the second batch look a bit neater with clearer lettering. They are really rather good biscuits, especially dunked in tea, being very nicely flavoured of lemon and vanilla. I think I'll probably put in more lemon next time as it was as but too subtle for me. The next recipe I'm going to try with the stamp is shortbread as that is traditionally stamped or patterned with a mould so may take the lettering even better than these. It's all just an excuse to make more biscuits!

Incarcerated!

Well I'm stuck in Papworth for a bit... Sigh. I had a bronchoscopy past Thursday as a way of hopefully ruling out my having nasty microbacteriums that would prevent me being eligible for transplant. The bronch went fine, in that I can't remember any of it! But since then I've been left with very sore lungs and nasty high temperatures... It got so painful that nearly called n ambulance on Saturday night, which anyone who knows me will agree that I must have been in agony if I was prepared to go to Addenbrooks A and E on a Saturday night! Fortunately, I could call the unit at Papworth and talk to a doc so I avoided that joyous experience. Sadly the temps and pain remained so they have dragged me in to sort me out. Very dull but alas necessary.

Hat a week/month progress

I've actually managed to do a bit of hatting over the last couple of weeks, which has reminded me just how much I enjoy it. I've been making a very large brimmed cerise sinamay hat, which I've edged with black and will have black decorations. Sadly, tomorrow I've got to have a bronchoscopy and start IVs so I probably won't be able to finish it for a while.  I need the bronchoscopy to try and decide one way of the other if I am harbouring a rather nasty micro bacterium.  I had one random sample come back positive for it in early October, but I've had five reasults since that are negative.  The problem is, that if I do have it it will almost certainly stop me being considered for transplant... My doctors do now seem fairly sure that I don't have it and that the positive was just one of those things that sometimes pop up, however, to make absolutely sure I need to be thoroughly searched by broncoscopy to be declared totally bug free.   This has been a very stressful and distressing time to put it midly! The idea of not even being able to be considered for transplant rather knocked me for six.  Knowing that one day I might be able to have a really positive outcome from transplant and get some of my strength and stamina and life back, has aways helped me carry on fighting when I've been feeling rubbish and struggling with this bloody disease - which has been rather a lot recently. So to have that little glimmer of hope taken away was really, really hard.  Having had all the negative results has restored my mental eqilibrium a bit, so hopefully the bronchoscopy will go well and also come back totally negative and I can try and get back on track health wise and head wise. Fingers well and truly crossed.

Anyway, as my hatting will be a bit on hold for a while, I thought I'd post a few pictures of my making it so that I feel a bit better about my lack of sewing! The pictures were taken with my iPhone so they are not great quality (and some are a bit out of focus!) but you can see how huge it is...

About to start blocking the brim.  The Crown is done and hiding in the background.

The blocked brim.  It took nearly every milliner pin I have.

The brim with its edge wired, its a long way around this brim...

Half way round sewing on the brim binding.  Clothes pegs are so useful in millinery!

 

So now I have to decide how to decorate it.  I've made some sinamay decorations but I am still not sure quite what I want.  I didn't make it with a particular event or outfit in mind, it is more an experiment to see if I could do enormous hats as well as the mini ones I usually make. I really like the simplicity of the shape as it is so I may leave it plain for now until inspiration strikes.  With two weeks of IVs to look forward to starting tomorrow I will have plenty of time to think about it...