What to say next

It's hard to know what to say when things you have imagined happening in the future seem to be hurtling towards you too fast and too soon, and there isn't a damn thing you can do to stop them.  Events develop under your nose and you just don't put all the pieces together to see the bigger picture until someone who is further back points out what you don't want to see.  They do it kindly, and with the best intentions, but it is still like a smack in the face.  It hurts.

Yesterday, the sleep clinic nurse was sufficiently concerned when I mentioned some of the FH's most recent symptoms, that she contacted the transplant clinic and we were sent along there to be seen by a doctor.  Although the two clinics are not that far apart, the FH almost collapsed on the mooch along the way, and I had to call for help to hold him upright - a nearby worker helped me to hold him whilst another fetched a wheelchair.  He was shocked at that episode and it put the wind up him before we even reached the transplant clinic.

As we weren't scheduled for an appointment yesterday, we had to wait some time to see the cardiologist - a lovely man that the FH has seen a lot of over the past 14 years that we have been in this area.  When we did see him eventually, it was after a caring charge nurse had taken down some details, and done the usual BP and weight checks.  Finally I was able to wheel him in to be seen.

The levels of fluid in the FH's body are rising, and his heart is under increasing strain.  The doctor described it as a stiff, thick balloon - hard to inflate and not very flexible any more, so it is not pumping the blood around his body very efficiently.  It is weakening, and at an increasing rate of decline, it seems.

The doctor was kind, and explained that there are still a few other diuretics that can help with the fluid, but that they will exacerbate the gout and probably increase the level of pain that he is experiencing.  He has largely had the gout at a manageable level these past few months, and has always been able to walk around lately.  His weight is increasing, but we are aware that that is fluid retention.  The doctor, with the best will in the world, is running out of options for the FH, it seems.

The FH was told yesterday that he should begin to think about how he wants to be cared for at the end.

His words were that it is not "imminent" but that we should discuss it and investigate the options, that he will write to the GP and ask him to talk with us about support available.  Thinking about this, there are a lot of questions arising in our minds, and so we plan to speak with the nurse practitioner at the surgery on Monday when we go for the next INR check.

Thank you for all your support and prayers - it means the world to me in all of this.

Hard

A visit to Papworth today and some news that we weren't expecting, that is hard to get our heads around.  Will have to think about this one some more.........

Not all rosy

In the interests of letting you know that life isn't always rosy in the Fens, I have to admit that the SW plan isn't suiting us at the moment....the EFG has lost some weight but she has put back on some of the weight she has lost in the time we have been attending the group this year.  I've lost half a stone, and it is staying off, just, but I haven't lost any more - I've been hovering about the same weight for the last month.  We just aren't in the "groove" or whatever the expression is!  Perhaps the time is not quite right for the EFG with her exams starting on Monday, and I find that my own dietary restrictions don't fit terribly well with the plan.  I think I have to get to grips with it in a different way, and study the plan more carefully - when I did it years ago, there was a choice between Original or Green days, and I could cope with that, but now there is also Extra Easy and Success Express to add to the mix, and it is all just a bit much to get one's head around.

We are both doing more exercise, so that is a positive point, and we are both well aware of the simple equation which everyone keeps pointing out: eat less + move more = weight loss....We're working on it!

Good news is that I heard this morning from my Faith & Worship tutor that the Connexion [or Methodist HQ if you like] has assessed my work that was sent in at the end of March, and it has passed muster!  Very pleased to get that phone call this morning.

Mathematics all around

I've had my fair share of time with a calculator today, I can say!  The girls went to the city on the train this morning, and then the FH went out to the lunch club, and I had some peace and quiet to check my emails: the temptation was easily overcome from online retailers such as The Book People, Cath Kidston and Sports Direct...not so easily overcome when that supermarket sent a voucher for £15 off when I spend £50.....that amounts to a 30% discount if you manage to get bang on the £50, and with delivery slots for just £1 now available, I thought it was worth a look.

I haven't had a delivery from a supermarket for months, certainly not this year, and I still choose not to buy fresh fruit and veg in an online delivery because to start with I am not keen on the quality from that shop, and secondly, I prefer to choose my own.  So I had a good look around for all the offers - the two for ones and the buy one, get one a bit cheaper type things!  I stocked up on long term bottles, cans and packets, and UJ helped me by asking for some ketchup and HP sauce.

It is useful to know your prices in this situation, and so I didn't buy anything that I think I can get more competitively priced in Aldi - margerine and tuna for example, as well as the fresh stuff.

The other reason for having spent time with maths was that my cousin and her work mate came around tonight for some help with Maths.  They are both assessors with learndirect and have to help their "learners" with passing Maths and English qualifications as well as the actual subject in which they are qualified.  Dear Cousin freely admits that her maths is a weak point and so she came over to do a paper on her computer with us that she has to help her clients to pass.  I found the actual calculations easy, but understanding what the questions really wanted was a bit of a challenge, and I let myself down on one question where I did some of the work before I realised that the units of the information were mixed up and needed aligning before actual calculation could begin!  How people whose first language is not English manage to work out what the questions want, I do not know.  Four of us worked on it for over an hour to make sure that they understood what they were doing.  Glad I don't have to do maths any more, but having sympathy for the EFG who is doing her A level Maths papers in the next three weeks - I have got A level Maths, but I have forgotten most of it now!!

I'll be getting the calculator out again tomorrow so that I can work on the June budget and figures for managing all the money.   See you then x

Psssst! Don't forget!

(image from ksh.wikipedia.org)

Apparently, it is Aldi voucher day tomorrow in the Daily Mirror or the Record if you are in Scotland.  I think that the amount you have to spend has gone up to £45 now, but it is still worth having if there is an Aldi near you and you have a family to feed.  It is ages since I have been along to Aldi so I shall definitely be getting a paper and popping in to get stocked up on tinned goods, and items like shower gel which we use lots of, and which don't go off!  Hope that helps someone x

Losing the plot

I think that is what the weather is doing - it is more like November here tonight than nearly June!  The FH is tucked up in bed watching tv with a hot water bottle and extra blanket on the bed, and the rest of us have been downstairs watching BGT with jumpers on.  The rain has been incessant today and the chooks are not chuffed with the reappearance of a sea of mud which they thought they had seen the last of for the season....oh dear!  They are still laying well, though, which is a positive point.

The YFG has been to see her work experience placement manager today to get some forms signed for her time there at the end of June.  She was a little bit nervous as this was something she had had instructions to do very much on her own, so I dropped her off nearby and left her to it.  The EFG hovered in the town and met up with her straight afterwards and then I gathered them up again in the local supermarket car park.  She coped well and has all her instructions for the placement - she will be an "optical assistant" at the optician's that we use in the town.  The chap already has plans for her to set up a Facebook page for the business so that his regular assistants can just keep it going.  He knows she likes technology!

My plans for a vegetarian day today got sunk when the FH declared that he wanted something warming for tea, "with thick onion gravy"........so I had to drag a Fray Bentos pie out of the storecupboard for him.  For the girls I made a potato-crust quiche, which fits in well with the SW plan, and so I served it to the EFG with veg on the side, and then the YFG decided that she would have a portion of her dad's FB pie with some of the quiche, which actually seemed like a sensible way to get her veg.  I've been naughty and had some cake instead of any proper tea......I'll do better tomorrow but they do say that a little of what you fancy does you good!  It mostly came out of the storecupboard and freezer so it was a cheap dinner all round and used up a few of our own eggs too.

Tomorrow the girls are off on the train to the big city for some shopping.  I bought the train tickets for them today, and used my free Friends and Family Railcard, which I had had the EFG put on as the second adult just for occasions such as this.  Result as the YFG gets to go for £2 return, and the EFG's fare is the same as if she had used her 16-25 Railcard.  The free railcard only lasts two months, and I probably won't take advantage of the opportunity to buy a full one at the offer price as the I rarely travel on a train with the YFG...it has been the girls together or the EFG with me.  Anyway, they will make use of it now and possibly again before it expires, so something for nothing and a wee saving there.

We were at the doctor's again this morning for the INR test, and the levels are settling now so the heparin injections have been stopped - the FH says that he didn't mind them, but he is jolly glad that they are done! Just the Warfarin to carry on with for now and have regular checks.  We are at Papworth on Friday for the CPAP clinic, so he is looking forward to the ride through the countryside, and I am hoping that the sun shines so that he can enjoy the ride more.  He doesn't get out much nowadays.

I found this beautiful scarf on a blog today so just had to share - I love this pattern and it reminded me of the scarf that I am knitting for the EFG so I brought it out again and did a few rows whilst we were watching tv tonight.  I shall have it done before September....

Good for me

I've had a good day, one with plenty of good things included.

For example, I went for a walk - up and down and up and down behind the lawn mower whilst I cut both lawns, in between light rain showers at lunchtime...

I went to an exercise class - Davina's Buff Boxing DVD with the EFG in the sitting room.

I had a relaxing hot shower and washed my hair after that, and then I was pampered whilst the girls took it in turns to plait my hair!

I've had my favourite meal for supper - sweet and sour chicken with rice.  I could eat that every day :)

The weather has been pleasant, and I have pottered in the garden too, tying up the raspberry canes, watering the tomatoes and seedlings in the greenhouse, having a cuppa and sitting outside, musing on all sorts of things.

The FH has been out this afternoon with a friend to a bee club meeting not too far away, but he was on his feet for just a little bit too long and has had to retire to bed with his jigsaw.  The girls and I have watched the first live semi-final of Britain's Got Talent tonight, and now that all the silly acts have been weeded out, there are some really good ones to watch and enjoy again.  We have particularly enjoyed the illusionist, Darcy Oake, and the impressionist Jon Clegg.  I've ploughed through a mountain of ironing whilst we were watching.

I know I haven't said much about the kitchen lately but it is still a work in progress.  I have cleaned out a couple more cupboards this afternoon whilst the YFG has done some more painting - she is a little star with a paintbrush!  We are hoping to get it done this week.

Hope you have had a good Bank Holiday weekend, and that the rest of the week goes well.  With it being half term, we have some bits and pieces planned, but the EFG has her first exam a week today, so she has been revising hard - chemistry and maths have been on the agenda for her today.