2018–A Review of the Year

A year of distinct ups and downs, mostly dominated by health problems and not a lot of creative output this year, apart from one major project.

It is now just over a year since my mum died, and it has taken all this time for the solicitors to wind up the estate. Yes, there were some complications because the law had changed between the deaths of my respective parents but we as a family think they could have got their skates on a bit more than they did! My hubby worked wonders with all the paperwork at the beginning of the year, while he was still laid up with his broken leg, which eventually healed, but it took a long time.

At the beginning of the year, we had a memorial service for Mum which was very well attended, and which was a good celebration of her long life of 96 years. We planned this together and I designed the service booklets as I had done for Dad. We played a selection of her favourite music and I sang “I know that my Redeemer liveth” from Handel’s Messiah, accompanied by the organist from our church. I was able to speak about Mum as well.

Art Projects

I decided to make two copies of a mini-album about Mum, one for her best friend and one for us to keep, and I was not able to blog about this while I was making it in case our friend saw it, and things have rather taken over and prevented me from completing the uploading of the almost daily posts I did and saved as drafts at the time. Something to remedy in the New Year, perhaps?

Anyway, I did blog about the finished project, and made a video flip-through of it.

Later in the year, I made boxes to keep the two albums in.

The other main project I made this year was three small heart-shaped frames that I altered, as gifts for friends.

To accompany the purple one, I also made a birthday card.

Other cards 

These included a birthday card for a beekeeping friend.

For our wedding anniversary, I made this card for my hubby, with a swinging heart with our initials on either side, with a faux woodgrain effect.

For Valentine’s Day I made him this one:

with a pop-up inside.

For a friend’s 100th birthday I made this card, using some dies I got at a craft show early in the year.

Embroidery

Also for this friend’s birthday, I made this small cross-stitch plaque from a chart I designed many years ago.

I made no further headway on my other embroidery projects, I’m afraid!

Knitting and Crochet

I’ve really got back into this again this year. This year was supposed to be the Year of the UFOs, when I was determined to tackle my huge stash of UnFinished Objects but as usual this rather bit the dust! I did manage to unravel a tunic top I’d made many years ago, and started to knit this up again to a new design which will hopefully fit me a lot better than its previous incarnation!

I have now completed the back and begun on the front, but haven’t photographed it recently.

I also finished knitting a striped scarf I began while I was having my chemo in 2015.

For this, I made a lot of felt and crochet embellishments, which I have yet to attach to the scarf. (Another UFO…)

I knitted another scarf from a single ball of gorgeous yarn I bought in a charity shop.

Again, I haven’t managed to complete this – I am still making the peacock feather embellishments for this.

I shall need to buy some more yarn to complete these.

Not a terribly productive year art and craft-wise. Hope to do better next year!

Health Problems

One of the reasons for my lack of productivity was a major health crisis at the beginning of the year.

I saw my surgeon at the end of last year when he agreed that my recurrent parastomal hernia really did need repairing as it was causing me major problems. I went into hospital to have this done in March, and within a fortnight I was back in again with sepsis. I had two large infected haematomas in my abdomen and had to have two drains to deal with these, and I also had intravenous fluids, two units of blood, and three different cocktails of powerful IV antibiotics before they finally found the right combination to deal with the infection. I was in for nearly three weeks, in quite severe pain for most of the time, and feeling dreadful. It took them over 24 hours to get my temperature down to a safe level, and the whole experience was not something I ever want to repeat.

I saw my surgeon again in August and told him I was sure the hernia had returned, which was confirmed by a CT scan in the autumn. I saw him again recently and we discussed options. He is consulting a colleague in Exeter in order to come to the right decision for me. I blogged in detail about this here.

Hopefully another appointment will be forthcoming in the New Year, and I will know the way forward. Having discussed everything at some length with him, I feel a lot easier in my mind now about the possibility of further surgery if they deem it necessary.

It took me quite a while to get over all this, but I am convinced my recovery was helped no end by a friend introducing me to fermented foods.

Some good news, though – at my regular oncology appointment in November I was told I am still cancer free.

Fermented Foods

I got very interested in fermented foods in the summer, and started drinking kefir and kombucha, to try and counteract the ill-effects of so many powerful antibiotics on my system. A friend who had had many gut problems over several years had benefited greatly from this, and she kindly got me started on this route, and I’ve become a complete convert! My hubby and I are both consuming kefir and kombucha on a daily basis and we believe this is also having a beneficial effect on his diverticular disease. Everyone is telling me how well I look these days!

I have become very interested in the whole new area of research into the gut microbiome, and have been reading a lot about it.

Making kefir.

Making kombucha.

During this time I also invested in a kefir cheese maker which is a lot easier to use and more efficient than using muslin in a sieve. I am getting very good results with the kefir cheese which is delicious, and the resulting whey is extremely beneficial too.

Sourdough

In the summer, I also started making sourdough bread which is extremely nutritious and good for general health.

I made my own starter, called Esmeralda.

After many months on a pretty steep learning curve, I think I’ve finally cracked sourdough making and am getting consistently good results now. I have blogged about my efforts and photographed the loaves I make most weeks, so that I can see how I have improved with practice.

We both enjoy eating this on a regular basis.

Other bread

I am also continuing to make my regular seedy bread in the bread maker.

Another sort of bread I make every now and then is challah. Delicious! Really sweet and rich. When we can, we attend a regular Shabbat meal held locally by a friend, and I always like to supply the challah if we are going.

This year, I have also started making brown seedy baps which are much nicer than the shop ones!

 Other cooking

With excess sourdough starter, I have been making crackers and pancakes, from recipes I found online.

I have also been experimenting with Middle Eastern cooking, having been given a brilliant recipe book. We both very much enjoy this delicious, delicately spiced and nutritious food, and it’s so easy these days to get the more exotic ingredients online. My hubby has been enjoying the results of my efforts in this new area!

With the apples from our wonderful tree in the garden, I made chutney for the first time this year, and it was a huge success. Here is the jar I made for a friend, complete with the label I designed for it.

I also made some sourdough crackers for the same friend on another occasion.

Since being ill, I have gradually worked through our supplies of refined carbohydrates and we have been eating more whole grain foods and plenty of fresh fruit and vegetables.

I seem to have spent more time baking and cooking this year than making art!

Diet

My 5:2 diet has been ongoing throughout the year but this year I haven’t really lost any more weight. I have put on a few pounds since reaching my original target weight, and have found it very hard to maintain at that level, so I think realistically my current weight is probably my ideal weight. I have still lost around 4 stone since I started and I am well satisfied with that. My hubby has now agreed to join me on this two days a week fast, and doing it together I can support him in his aim to lose some weight.

Bible Study

Our little group went into abeyance for a few months because I was so ill, and it took me quite a while to pick up the pieces of my life again and catch up with everything that had got neglected during that time. When we resumed in the autumn, we gained two new members which has been a great joy – both contribute a lot and we have some interesting and lively discussions during and after the teaching. I continue to design plenty of visual aids on my desktop publisher, photo editor, and Inkscape (vector images) to produce on PowerPoint which we show on the TV screen. This year we have embarked on a major course on prophecy, and during the coming year, interspersed between these sessions, we will again be covering the Feasts of the Lord at the relevant times throughout the year. I have been studying the Bible in depth for over 30 years and it is always such a privilege to be able to share the fruits of my studies with others, particularly when they are as hungry for it as the lovely people in our small group. It would be lovely to see our numbers grow, but there is a great deal of apathy in the church today and most people are not prepared for the commitment, or to put in the time and effort required for study – such a shame, as it has proved to be the most exciting adventure of my life.

Kitties

Our two new kitties celebrated their first birthday in May, and with the nice summer weather we let them out in the garden for the first time, and they were soon enjoying it to the full, spending all day out there, chasing butterflies and relaxing in the sun, and keeping us company when we were sitting out under the apple tree having our meals. It was such a lovely summer in which to let them out.

Recently, though, we have been having terrible trouble with Ruby escaping through my hubby’s kitty defences and he has been working on improving them. Until we are sure they are safe, both kitties are grounded for now, and have reverted to being indoor kitties. They don’t seem to mind too much, and it’s probably a good thing the weather has been so wet lately!

Not only has Ruby developed into a regular Houdini, but she has also developed into the more naughty of the two in other ways too – she is a terrible food thief and will pinch stuff off your plate if you just look away for a few seconds! She can smell butter at 500 paces and absolutely nothing is safe from the little monkey. Lily, on the other hand, doesn’t seem bothered about our food at all and is generally very well behaved! There’s always one, isn’t there…

They continue to be an absolute delight. They are now fully grown and adult but they will always be our babies! They are very close and get on so well with each other, with only the occasional spat, usually at meal times. They are affectionate and love to be with us, and communicate with us all the time. Their little personalities are so different from each other and they seem to have settled down with Lily being the senior of the two. We are absolutely delighted with them both.

Outings

We have had some lovely outings this year. In May we attended the Devon County Show, a fixture I should hate to miss! I wasn’t long out of hospital and was determined to be well enough to go.

Teignmouth.

Hope Cove.

Tyntesfield, near Bristol.

Knightshayes Court.

Meals Out

We also had some fabulous meals out, including a really posh nosh evening at a Michelin starred restaurant for which we were given tickets.

A meal out with a friend. Very chefy food at a pub near us.

For various reasons it is difficult for us to get away on holiday, but living where we do, there are so many lovely places to visit, and friends to eat out with, and so on, that we hardly miss it. I love being at home anyway, with our lovely surroundings and beautiful little garden, our kitties, my studio and all the things I enjoy doing.

Computers

At the end of the year I had a bit of a crisis with my remaining laptop which involved having to format the hard drive and reinstall everything. My hubby’s laptop completely died around this time too, and with Mum’s money about to make an appearance, I decided to buy us both a new laptop and we went off one evening after doing some online research, and got a couple of Acers. I’ve always had HPs in the past but my last one really wasn’t as good as previous HPs so I decided not to get another. That laptop will now go up in the office as a replacement for my previous HP which died (I have been struggling up and down the stairs with it and really need one permanently up there for the accounts etc.) and the new Acer will now become my main computer. I still haven’t got everything back on and working as I would like it but I’ve got the essentials, and the rest will happen in due course.

Summary

Looking back over that little lot, despite my various difficulties this year, I’ve actually done quite a bit! The year has generally been a very good one and we have a lot to be thankful for. I hope to achieve a bit more on the creative front in the coming year, and for once I’m not going to list all the things I intend doing because I always fail to do them!! I shall do what I shall do, and hopefully I shall enjoy the process!

Wishing all my followers and visitors a very Happy New Year.

WOYWW 494–Turtles and Tortoises, Ants and Pants

Studio Time!

At last I have managed to have a good long session in my studio, so for once I’ve got a real desk to show you for WOYWW. I’ve got a few projects with a deadline, and I’m waiting for some supplies from Ebay, but in the meantime I’ve been able to make a start on embellishments, in the form of a flower factory. Sheba, my Cougar cutting machine, has been working overtime.

I’m afraid I can’t go into detail about the projects for the usual reasons, but all will be revealed in due course.

A few weeks ago my hubby gave me four little frames that he’d bought at a church sale, and then discovered that they didn’t have glass in them, so he didn’t want them. He offered them to me and I was sure I could do something with them.

I dismantled them and took the embellishments apart for use in other projects. The first step will be to paint them with gesso, and then they can be embellished.

Sourdough

After my success last week, I decided to try making two small loaves instead of one large one, so I could use my small bannetons again. I made it on Saturday and ended up with two small turtles again – it collapsed completely. I was very disappointed and frustrated.

Where it did rise a bit, it had formed one big hole, that you can see in the photo. Again, it tasted delicious. I decided to make some more straight away, so the next day I did a repeat performance, with great success, and ended up with two tortoises instead of turtles!

Here they are, with the bannetons.

Really not bad at all. The only problem is, using the Dutch oven method, I have to bake one after the other, which means having the oven on for quite a bit longer, but it’s only once a week.

I realised that I’d made a couple of mistakes with the first batch. I’d put the salt in too soon, before the autolyse had had time to rest, and I definitely over-worked the dough, which results in developing the gluten to the extent that by the final proving, it starts to break down and the dough collapses. Success is all in the handling, and with the second batch, I followed the instructions to the letter and got much better results. It’s still a bit flat but the dough felt a lot less wet and sticky, and it did hold up better.

I did some other cooking as well during the week. I made a couple of big casseroles for the freezer so we’ve got plenty of ready cooked meals – a beef one and a tarragon chicken one, both very tasty.

I also made some sugar-free marmalade at the weekend, adapting a recipe I found on a diabetic site. I adore marmalade and could eat it all the time, but am always conscious of the high sugar content, especially as I am watching my weight. My hubby is no longer pre-diabetic since he gave up added sugar, and when he was last checked he was absolutely fine – normal, with no indication of diabetes at all, which I am sure has been helped by our general change in diet over the past few months, with more low GI carbs, fewer processed foods and all the fermented stuff – kefir, kombucha and sourdough.

The marmalade is sweetened with Stevia, and thickened with soaked chia seeds which produce a natural, unflavoured gel. The recipe warned that the seeds make the marmalade look as if it’s full of ants but I don’t care about that! They are full of nutrients and also prevent dehydration which is good news for ileostomates too! I made the marmalade with one of the tins of Mamade I had in the pantry –this is just prepared Seville oranges with no additives, to which you simply add sugar and water and boil it up, so the next best thing to completely home-made, just without all the hard work! The sugar-free version is delicious, even if it doesn’t look that palatable.

I’m not sure how long it will keep, so I’ve put the jars in the fridge. I don’t think it will hang around for long, though, especially if we are both digging in!

I’ve got a couple of events coming up for which I need to make some little presents, so I’m hoping to be back in the studio again this coming week.

Health update

I’ve had three days this week when I’ve been completely wiped out and not able to do anything much, which is a bore, and this has not been helped by another dose of hair-tearing frustration today over my ongoing support garments saga.

Not having heard anything, I phoned them a couple of days ago, only to be told that the GP had only prescribed one additional pair instead of two. The first pair (which had to be made twice because they messed up on the first pair, which didn’t fit me) was issued on a single prescription, so getting a further prescription meant more delay. I was annoyed that the company hadn’t seen fit to inform me of this, and if I hadn’t phoned up, I wouldn’t have known, which would have caused more delay again. I emailed the GP surgery straight away (hopeless trying to phone), asking what was going on, and had an immediate reply, saying they had issued another prescription straight away, for two pairs! If all goes according to plan, this will mean that I should end up with a total of four pairs, rather than the maximum of three that I am supposed to have. Three is the absolute minimum – one on, one in the wash, and one for emergencies in case Kermit has a leak or something. I told the GP about all the problems I’ve been having with the company.

The woman I spoke to at the company said she would check with the work room and see what progress was being made on the single pair that they were making, and she would phone me straight back. I sat by the phone for two or three hours and then phoned again because I had heard nothing, only to be told that the woman had phoned back and left a message on our answering machine! I told her the phone had not rung, and when I checked, there was no message. Hopeless. Anyway, she said the pants would be sent out on Friday, which means I won’t get them till early next week. They were supposed to be pushing this through as a matter of urgency, after messing me about with the first pair, and now I’ve got to wait another whole week! I told her that I had been wearing the only pair I have got so far, for nearly 3 weeks and they need a wash!!! The old ones from last year are not giving any support at all so it’s pointless wearing those.

I told her I was fed up with all this messing about, and I was very unimpressed with how unbusinesslike the whole thing was, and how frustrated I felt. I told her my hernia had definitely returned and that these garments are essential medical supplies, and it was completely unreasonable to have to wait for 3 months from when the stoma nurse made the initial appointment, to receive even one pair. I told her I’d had all this nonsense last year as well, and I didn’t know what I would do if they got the subsequent garments wrong, so they’d jolly well better get them right! She said she was very sorry, and completely understood how I felt, etc. etc. I said this is what they all said, but nothing ever got done! What I need is some action, and some results.

Shoshi spitting tacks again. Grrrrrrrr and double grrrrrrrrrrrr. I shall definitely tell the stoma nurse when I see her in December at my surgeon’s appointment. She was appalled last year, and said she would contact them about it, and reported back to me that she hadn’t had much joy with them, either.

Hopefully by this time next week, I will at least have got a second pair.

Kitties

No kitty photos this week. Neither of them has done anything very interesting except eat and sleep and keep me warm, and a bit more mutual washing on my lap! They are both eating well now the weather is colder and they’ve filled out quite a bit. Two nice little substantial kitties! (Or should I say, “Fat and lazy!”)Ruby hasn’t got out again now my hubby has cut that tree right down.

Parastomal Hernia Repair

Warning – this post contains graphic medical details and surgical procedures. Those of a squeamish nature are advised to look away now or read with caution!

On Wednesday 28th March I was admitted to hospital to have my parastomal hernia repaired. Finally coming home on Thursday 5th April, it is only today that I feel up to updating my blog. The after-effects of general anaesthetic and morphine always causes problems with my eyes – nothing will focus, and I keep wanting to rub my eyes to clear them, and check my glasses to see if they need cleaning, and even checking to see if I’ve actually got them on! Also, my concentration tends to be poor and my energy levels are extremely low.

A bit of background – in March 2015 I had major surgery to remove my whole colon because of bowel cancer. My whole cancer journey can be seen here. By 2016 everything was hunky-dory and I was managing Kermit, my stoma, like a pro, and I thought that was “it,” and that my life would now move forward unchanged, and I was very grateful for the improvement that Kermit had made, with the total eradication of my ulcerative colitis. He was a very well-behaved little stoma who gave me very little trouble.

However, that autumn I developed a parastomal hernia. This is a very, very common problem for ostomates (people with stomas) because by the very nature of the operation to create a stoma, a weakness is introduced into the abdominal wall. If you are older, overweight, smoke, you are more likely to develop a hernia, and some estimates are as high as 60%, depending on how they calculate the statistics – one also has to consider the general health and fitness of the patient, and how long they have had their stoma, because with time, the risk increases. OK, I was overweight at the time, and over 60, but didn’t smoke, and really did hope that I’d make it a bit longer than 18 months before developing one!

They tend not to interfere with these hernias unless they are causing problems. I was prescribed some support garments, and went my way.

At the end of January 2017 I suddenly developed an obstruction, and had to go straight to A&E as this is a life-threatening condition. After a lot of waiting around and being poked and prodded to try and shift things along, all the while becoming more and more poorly, throwing up and getting very weak, the CT scanner was finally available and they discovered that my small hernia had caused the obstruction and I needed emergency surgery to correct it. Emergency… from Sunday morning I had to wait until Wednesday morning!

I was in hospital for 2 1/2 weeks and the whole experience was most unpleasant – emergency surgery is a lot worse in terms of outcome than elective, especially if you are poorly to begin with. To cut a long story short, I had a general surgeon to perform the operation because my own specialist colorectal surgeon was not available, and this surgeon was not qualified to do more than suture the hernia closed. Statistics show this method of repair to have a 100% failure rate, so it was then a waiting game to see when, not if, it failed.

Last year I created a little book entitled “Second “Wind” which depicts my journey in terms of the passage of a hurricane – the “first wind,” causing great destruction, being my whole cancer year in 2015, followed by the eye of the storm, when everything quietens down and you think the storm is over (2016), only for the “second wind” to arrive, which causes even more destruction than the first. You can see the book here, and the video flip-through here.

Throughout last year things were much less stable than during 2016. My colorectal surgeon saw me several times during the year and I had CT scans which revealed that by May, some fat was beginning to come through, and by September the hernia was back in full force. He was able to reassure me that large hernias are less likely to cause obstructions than small ones, which gave me peace of mind as far as my worries about a repeat performance were concerned. I told him that the whole area was quite unstable and causing the stoma to retract regularly, which caused output to seep under the flange of the bag rather than passing into the bag. This is a problem because with an ileostomy, the output is not a fully-formed stool and still contains digestive enzymes, which one’s normal skin is not designed to withstand, and after short contact, the skin becomes excoriated and extremely irritated and painful. When things are working normally, one only has to change an ileostomy bag every few days because the more liquid output is drainable from the bottom of the specially-designed bags, but by this time I was having to change the bag daily, and sometimes more often when there were leaks, in order to keep on top of the skin problem. After 3 years of experience I know how to deal with the problem so it wasn’t fazing me, but it was becoming a major pain having to do this on a daily basis. My surgeon said the problem definitely needed to be fixed. I saw him again in January and he put me on his urgent list for surgery.

I didn’t get a date for some time, and the end of March from January isn’t brilliant if this was supposed to be urgent but we all know the pressures the NHS is operating under at present. Then the snow came, and I thought I was absolutely guaranteed to be postponed, but determined not to allow myself to get upset about this, having experienced melt-downs in the past over postponements.

However, thanks to everyone’s very kind prayers, everything went ahead as planned, and down I went.

We turned up at the hospital at 7.30 a.m. as arranged, and it was not long before I was ready to be taken down to theatre. I felt a bit weepy and vulnerable before going in (I haven’t felt like that before and the only thing I can think of is that I’d been warned to expect some considerable discomfort afterwards but perhaps one can’t rationalise such things).

My surgeon approached the operation through Kermit, rather than opening me up right down my midline yet again (been done twice). He made a small incision horizontally either side of Kermit to give him more room to manoeuvre, as he told me he was intending to insert a much larger piece of mesh than usual because of my muscle weakness due to my ME. He opted for Permacol biological mesh, derived from pigskin, which gives better results than synthetic, with a lower risk of infection, and it being similar genetically to human tissue. It eventually becomes incorporated into your own muscle layers, strengthening them. It is ironic, and poetic justice I think, that having named my stoma Kermit, I had named the hernia Miss Piggy, and she has been banished (hopefully forever) beneath the surface with pigskin! When I told my surgeon this, saying how Kermit hated Miss Piggy and kept retreating from her, and how there had been this ongoing battle for supremacy of my belly, and that from now on, Kermit and I could resume our hitherto happy relationship together, he was very amused and laughed aloud! He roared with laughter when I first told him my stoma was called Kermit, and wanted to be reassured that he hadn’t turned green!

(Many ostomates give their stomas a name. It helps make friends with the little fellow and to see him not as a red alien that has arrived on your stomach and changed your life forever! While I was in hospital this time, there was a lady with a brand new ileostomy which had come about through an emergency, so she had had absolutely no mental preparation for it in advance, and the poor lady couldn’t even bear to look at it. I tried to encourage her as much as I could, having three years’ experience literally under my belt, and after a couple of days she made a huge stride forward and gave it a name – Prince Harry! All of us in the bay laughed uproariously and asked why on earth? She said because he is brave, and loves his mummy! I thought, well, if she can think of her stoma loving her, perhaps the day will soon come when she can love him back. I said the name was brilliant; Prince Harry is a popular, fun-loving guy who does a lot of good in the world, and even more appropriate because he is a redhead! I gave this lady my phone number and said to her and her husband that any time she wanted any advice or help, or just a shoulder to cry on, she could call me. I am sure she will do fine eventually but for her it’s a huge adjustment, because beforehand she wasn’t even suffering any bowel problems – her colon had pretty much died as a result of an adverse reaction to a drug she was taking for quite another problem.)

After the operation, my hubby joined me in the recovery ward and I was definitely away with the fairies with drugs, and in quite a lot of pain. Before long I was taken up to the ward and ended up back on the same bay I’d been in twice before, each time in a different bed!

Before going in, I had been concerned about the problem I had last year with all my cannulae failing because of vein damage caused by 6 months of chemo. At my pre-assessment, the anaesthetist said that it was possible that my veins might have recovered by now, but they would note my request for the insertion of a PICC line at the outset, while warning me of the risks associated with this. When I came round, I found a regular cannula in my left wrist, and further up my arm, a mid-line (a half-way house to a PICC) for them to use if the cannula failed, but in the event, the cannula was as good as gold throughout, so the mid-line was not necessary. I am reassured by this.

Everything went according to plan. As expected, with Kermit being remade, he is huge – as big as he was when I first had him, at 40 mm, but over the next few weeks he will shrink and probably end up about the same 25 mm he was eventually. I am now using flat bags rather than convex ones, as he protrudes enough not to need the surrounding area to be pushed in, and the team sent me home with enough supplies to keep me going until my next order to my supplier which I put in on Tuesday, and the parcel arrived yesterday.

Being in over Easter as I had been three years ago when I was in for my total colectomy and the creation of Kermit, I fully expected to be kept in until the Tuesday at least, to take account of the two Easter Bank Holidays. However, when Easter Sunday came, four days later, I was told I was fit to go, and they discharged me.

I felt far from ready to go. With my ME I have a lower baseline and it takes me longer to bounce back, but they said I would recover better at home, and surgically speaking there was no reason for keeping me in. So off I went, and on arrival home, went straight to bed.

I stayed there for two days, feeling very weak and unwell, and in quite a lot of pain. I didn’t interfere with Kermit that day, but on Monday I changed his bag. I had noticed his output was quite red (as if I’d eaten beetroot!) and put it down to the general early days recovery etc. but when I took the bag off, there was quite a lot of bleeding from the underside of the stoma itself. I was able to clean it up enough to get another bag on, and my hubby and I agreed I should phone the stoma nurse the next day (that day was a Bank Holiday) and when I did, she said these things usually clear up on their own but if it didn’t, to try cold compresses to constrict the capillaries, and if that failed, I was to come back.

On Wednesday late morning I again changed the bag and was concerned how red the output had been in the meantime; this time the bleeding was profuse, and from other areas as well. It didn’t seem to be coming from the operation wound but from places all over the surface of the stoma, and it was running down my stomach onto my legs, and as fast as I cleaned it up, it was running again. I changed basin after basin of water and was getting through endless dry wipes. If you cannot get the skin clean and dry, the bag simply won’t stick. I was getting so desperate and called my hubby, and together we battled with it for getting on for 45 minutes. Eventually I wrapped the stoma in a dry wipe and got my hubby to hold it while I cleaned and dried the surrounding area, and we quickly zapped on another bag.

I went straight to the phone and called the stoma nurse. As we were speaking, I felt some activity and asked her to hang on, and blood was already seeping under the bag. Asking her to wait, I grabbed some “blueys” – those large blue incontinence pads ubiquitous in hospitals, and stuffed my pants with them! I looked 9 months pregnant! She said to go straight to A&E and they would catch up with me in hospital.

Then began a horrendous time of waiting around. We got through A&E to the medical assessment unit relatively quickly, but we waited for hours, being seen every now and then by people who just wanted to take blood and do endless paperwork. Repeatedly I asked for pain relief, and it was not until I had been a total of eight hours with no pain relief that any was forthcoming. I was also instructed not to eat anything because they were not sure whether I would need further surgery. I was therefore in considerable pain, weak, hungry and pretty agitated and upset (and gave my poor hubby a bad time, but he will fuss so!! – I know it’s only because he worries, but it really doesn’t help anyone!!). Eventually I saw someone, and a stoma nurse and one of her HCAs came down and they had a good look at Kermit. She reassured me we’d done absolutely the right thing coming in, and there was no way we could have dealt with this. She also said that I should not have been sent home before the stoma team had been up to see me and check all was well, but none of them were in until the Tuesday.  They would have spotted the bleeding and kept me in until it was dealt with, and I could have avoided all that stress and hassle, especially as I was feeling so weak and unwell, and less able to deal with it. My hubby said, and she agreed, that I was feeling a lot worse because of the loss of blood.

Before my operation I had been instructed to stop my rivaroxaban. I had been prescribed this anticoagulant in 2016 when one of my CT scans revealed numerous small pulmonary emboli. After the operation they had resumed this, and the nurse said this certainly would not be helping with the problem. For now, I have been taken off it, and have not yet had any instructions as to when, or if, I am to resume it. She said again that the problem usually resolves itself. They had removed my bag and put one of their clear hospital ones on, so that people could look at Kermit without taking the bag off each time. I was told they were keeping me in overnight, and then we had to wait another goodness knows how long until they finally found a bed for me.

They were keeping me in for observation. Having taken blood they wanted to check my haemoglobin levels and see whether I would need a transfusion, or IV fluids, but this turned out to be unnecessary.

I was put on a general medical ward, in a dingy little room on my own which was very depressing. The only adornment on the walls was a series of posters which were just too far away to read, and every single one had been stuck up crooked! I thought if I was in there for any length of time I would just have to get out of bed and straighten them all! I had to wait while the right airflow mattress was found, and when I eventually did get into bed and my hubby was able to leave, I was so exhausted that I couldn’t sleep till gone 4 a.m. As soon as I relaxed in bed I got a violent attack of restless limbs – I often get restless legs in the late evening, probably due to my ME, but never have I had it in my arm before, and while my legs were bad, my right arm was sheer torture. I eventually lay hard on it and eventually it subsided.

They asked me to save all Kermit’s output into a pan so they could measure it, and in the morning, because I had eaten so little, there was very little in there but about 1/4 bag full of blood.

In the middle of the morning I was producing output again and the blood was a lot less. The stoma nurse and her side-kick came in and had another look, and while the bag was off, my surgeon turned up, and was able to have a good look, too. He was satisfied that the problem was nothing to do with his excellent handiwork, and pronounced me fit to go home that day, and to stay off the rivaroxaban, and the stoma nurse said she would phone with a clinic appointment for me in the next fortnight, but I could contact them any time with any worries. As he left, he said, “I am very chuffed with this operation. It all went very well.” I know he had given it a lot of thought over recent months, wondering how best to approach it in view of the fact that the hernia was sited awkwardly – on the outer side of the stoma – and taking my ME into account too. He had told me this would not be a straightforward operation and would probably take some time. He is so charming and friendly, and I am endlessly grateful to him for all he has done for me over the past three years.

After lunch, my hubby was able to take me home, but the usual wait on the pharmacy to send up my drugs meant we didn’t get home till tea time. I went straight to bed and stayed there till yesterday morning.

I left Kermit well alone during this time, but kept a close eye on him through the small window in the bag, and his output, which seemed to have no blood present. I changed his bag again this morning and all was well – he is still bleeding, but not hugely. Stomas often bleed a little when you clean them and the nurses warn you not to panic over this; it is because of the rich blood supply and the delicate nature of the surface of the tissue.

Yesterday and today I have been up, and resting downstairs on the recliner. My hubby is looking after me very well, preparing the meals. I had cooked a lot of low residue meals to freeze before going into hospital and it turned out that I didn’t need to go on this very low fibre diet this time after all, but no matter – we now have lots of good home cooking available as single-portion ready meals and I can eat as much fruit and veg as I want to bulk up the fibre. I now have to rest, build myself up, move about a little in order to build my muscle strength and improve my mobility – I am still very shaky and weak, and not to overdo things.

This morning I showered and washed my hair at last – utter bliss! – but oh so tiring! My hubby and I sorted the vast quantities of laundry together and he stuffed it all in the machine and I pressed the right buttons, and later he hung it for me. Throughout these activities, I kept taking time out to rest for 20 mins or so, and then started again. Together we’ll get through it all.

The stoma nurse phoned yesterday to arrange a home visit next Thursday – I am highly delighted as this saves the drive to hospital and a lot of waiting around while I am still so weak.

Although they have taken me off the rivaroxaban, I still need some sort of anticoagulant treatment for the prevention of DVTs (deep vein thromboses) post-op. When I was in last year, because I was on rivaroxaban, this was deemed unnecessary, but I am now back on the normal post-op schedule of daily fragmin injections, but fortunately for only two weeks instead of the usual four. The district nurse is calling in each afternoon to do this for me and I’m counting the days till the box of little syringes is empty – this stuff really stings – like being stung by a bee! The great thing is not to rub the place afterwards because this makes it a million times worse!! They sent me home with the supply of syringes together with a sharps bin for the nurse to put them in, and she will take this away for proper disposal after her final visit.

So that’s me for now – hopefully on the road to recovery at last, and with time to build up my strength and be fit to enjoy the warmer weather and get back in my studio again!

2017–The Year in Review

Warning – Long post, photo rich

Another year has flown by, and my goodness, what a year it has been. Here is my annual review of what has happened in my life over the past twelve months.

Mum

The most significant event was the death of my mum on 9th December. She was 96 and was ready to go. Over the past few years her quality of life had deteriorated greatly and she spent the final couple of years in residential care, almost completely deaf and unable to do much. I often think that the progress of modern medicine may have succeeded in prolonging life, but if the quality of that life has deteriorated to the extent that it no longer holds any pleasure, what is the point? I am absolutely against euthanasia, but do not hold with “striving officiously to keep alive…”

Although during my adult life, my relationship with Mum was not what it might have been, I have many good memories, and am grateful for many things – during my childhood she was always there for us, with a hot meal on the table when we would arrive home hungry from school; she was always taking us out for walks, outings to the seaside with our little friends, and providing memorable birthday parties and so on. I learnt my home-making skills from her and am so grateful for the knowledge passed down through the generations from mother to daughter, so often lost these days when economic pressures make it necessary for mothers of small children to be so often out of the home in paid employment.

My hubby

All through this year my hubby has been far too busy, rushing around and hardly being at home. This has made him very tired when he has been home, dropping straight off to sleep in front of the TV etc.! I had been on at him for taking on too much, and the need to remember that he is no longer 30 years old! Then, at the end of November, he slipped and fell, and broke his leg, and he has been immobilised since then, walking with difficulty on crutches and not being allowed to put his foot on the ground. It has been touch and go whether he would need it pinned but they seem to think he’s doing OK for now, but he’s going back to the fracture clinic in four weeks’ time and they will make the final decision then. He is going to be in plaster for a long time, it seems. During this whole time he is unable to drive, and we have been very stuck, but our wonderful friends, neighbours, people from church and family have been very supportive and helpful, taking us out when necessary for hospital appointments and other engagements, doing odd bits of shopping and helping with things at home.

One friend said it was a good thing he was immobilised for a while because it would make him stop and rest a bit! Also, being unable to rush around all the time, he now has time to sort through all Mum’s papers and deal with things following her death.

I have found this whole period a great strain because I can deal with our normal life OK, managing what I have to do and factoring in the necessary rest times, but with my hubby so out of action, I have not only had him to look after, but have also had to do a lot of the things that he would normally be doing, and there have been times when having to keep constantly on the go, and simply having too much to do, it has all got too much for me and I’ve lost the plot and thrown a wobbly. I find that with my ME brainfog (and probably residual chemo brain – this has definitely affected my memory and concentration as well) that I tend to cave in under too much stress and don’t deal with it too well. I have also been carrying the anxiety about my present state of health, not to mention the stress associated with Mum’s death and all the extra things to do because of that, and then Christmas in the middle of it all.

I yearn for a period of peace and quiet and our lives returning to some sort of normality.

Health Issues

It has been another significant year for me, health-wise. In 2015 I was successfully treated for bowel cancer, and throughout 2016 I enjoyed better health than I had done for years, with the eradication of my ulcerative colitis after the removal of my entire colon. My ileostomy was very settled and easy to manage throughout the year, and I believed that this would be the story of the rest of my life, but in the autumn of that year I developed a parastomal hernia.

At the end of January this year, this caused an obstruction which necessitated emergency surgery and a two-and-a-half week stay in hospital, very poorly, and taking quite a long time to recover. A simple sutured repair of the hernia was performed by a general surgeon and as anticipated, this failed, and by the autumn the hernia had returned, and it is now in the same state that it was at the beginning of the year, causing me to be fearful of another blockage, and history repeating itself before my specialist colorectal surgeon can perform a proper repair and insert a reinforcing mesh.

I was due to see him before the year’s end, but this has not happened, and I now have to wait till mid-January to see him. I am hoping that now that the hernia has returned, and knowing my history, he will be prepared to have me in for elective surgery before it causes me another obstruction.

My system remains free of cancer, which is something on the plus side. I have seen the oncologist twice during the year and she is very pleased with me. I continue to suffer from peripheral neuropathy as an ongoing side effect of the six months of chemo I had in 2015, and this may or may not clear up; whatever happens, it is a small price to pay for survival!

Diet

I began the 5:2 diet in the summer of 2014. I had to take a break from the diet throughout 2015 while undergoing cancer treatment, but I resumed it in 2016, and this year I reached my target weight, having lost a total of 4 1/2 stone, and losing 10 inches around my waist! I have a tremendous sense of achievement over this as it proves that it can be done, and through diet alone as well, because with my ME I am unable to take sufficient exercise to make any difference to weight loss.

I am absolutely delighted to have been able to get rid of clothes that are now too big for me (trousers and leggings that wouldn’t stay up!) and to have an excuse to buy some new things, but above all, to be able to get into some old favourites again! For years my friends were telling me to get rid of these clothes because I should be realistic and accept that I’d never again be as thin as I once was, but I have proved them wrong. I had a lot of clothes that I really loved, and couldn’t bear to part with, and they are now wearable again. This makes me feel good, good, GOOD!!

Here’s me in my Afghan Nomad Dress (which I made years ago – definitely in the 1990s as this photo was taken when we lived in Plymouth:

And again, on Christmas day this year:

Here are my “before and after” pics – the first was taken in 2013 (the year before I started the diet) and the second was taken this May. I  can’t believe I looked like that…….

Kitties

Another significant, and sad event during this year was the death, only three weeks apart, of our beloved old kitties Beatrice and Phoebe.

Phoebe, aged nearly 14, developed bowel cancer and had to be put down; she had also suffered from grand mal epilepsy for the last couple of years of her life, which was extremely distressing. After she died, Beatrice, nearly 17, seemed utterly lost without her, despite the fact that they were never that close. She lingered in all Phoebe’s favourite spots as if looking for her to return, and went completely off her food, until she became so weak and obviously heart-broken and grieving, and she was put down three weeks later. We knew that both of them, being in poor health, would die this year, but we never thought it would happen so close together.

Then followed six weeks with no kitties in the house. This is only the second time this has happened to us in over 30 years of marriage, and it was very hard!

We found our new babies online, and at the end of July we drove over to west Dorset to collect them. Amazingly, they were born on our wedding anniversary (24th May)! We won’t forget their birthday in a hurry.

Here they are at 5 weeks, when we were first introduced to them (we couldn’t have them till they were 9 weeks old).

This is what they look like now – I can’t believe how much they have grown!

Lily and Ruby are now (unbelievably!) seven months old, and so much part of the family that we cannot imagine life without them. They are an utter delight, full of personality, and so pretty too! I’ve done lots of blog posts about them – far too many to provide links for, and I have also made numerous videos of them which are on my Youtube channel.

House

Back in March we discovered dry rot under the kitchen floor, which was a worrying thing because we knew it would be very expensive to deal with.

It turned out to be only in one small isolated area and although costly, a lot less so than we’d been led to believe, which was a huge relief. Work began in April.

It meant that the old-fashioned cupboard in the kitchen had to come out (it was a pain to use anyway, so no great loss) and we then had to wait until July before the carpenter was free to come and make me a beautiful walk-in pantry.

During this time I used the kitchen in Mum’s flat (which occupies half the downstairs of the house) – very small and cramped, but perfectly adequate!

The new pantry completed:

The whole unpleasant matter of the dry rot turned out to be a blessing in disguise because the new pantry has made my life so much easier, and I continue to be thrilled to bits with it. I made some extra shelves to house all my supplies, and I made some decorative labels to go on my jars, and the whole thing looks fantastic!

Food

Considering what else has gone on, I’m happy to say I have been able to do some baking and cooking this year. I find this very therapeutic.

I went on a bread baking day too (my hubby won the ticket for that).

Finally, I cooked my first Christmas dinner for over ten years.

For our annual family get-together after Christmas, I made four puddings:

Cancer Group

Our monthly cancer Cakeathon continues but we are now meeting here at my home instead of at the cancer support centre. Numbers have dropped off somewhat over the last few months because people have been busy with other things. I bake regularly for these meetings. One of our members had a coffee morning in aid of Macmillan’s this year and several of us attended that, and we baked for it too. I am perpetually grateful for all the wonderful friends I have made through getting cancer.

Bible Study Group

This has been ongoing too – our numbers remain small but they are so faithful and I am grateful for that! We completed our course on the Tabernacle, and have done occasional sessions on the Feasts of the Lord to coincide with the calendar dates on which these fall, and we began a major course on Prophecy, interrupted by a short course on Salvation (since the subject was raised by one of our members – we are very flexible about what we do!) – to be completed in the New Year. There is a lot of work involved in preparing the sessions, including designing the PowerPoint slides (which are creative and fun to do) but I find it very fulfilling, and just lately it has been something which has encouraged and built me up in the middle of a lot of troubling events.

Art

As a result of everything that has gone on this year, I have found it very hard to find the time, energy and concentration to do much art at all, and my studio has lain neglected, a sad, dust-gathering dumping ground, for far too long. I have got new stash which has been sitting around for months not even opened. I hate the fact that it is always my creativity which suffers the most when the pressures of life encroach. When time has become available, I have found that I am too tired to do anything, which is an ongoing frustration.

However, I have managed to achieve something!

Mamhead Album completed:

This was a project I worked on for several months in 2016.

I made another little book as well, this year, called “Second Wind”:

which was my first attempt at a Coptic binding.

I had hoped to finish the other book I have been working on by the end of this year but with the pressures on me over the past few weeks, this hasn’t been possible. This is a book giving examples of all the different techniques you can use with Infusions.

I also made a selection of simple stamped cards to replenish my stash:

I made a couple of cards for my hubby, one for his birthday and one for our anniversary, both mixed media with Infusions.

I have done some Zentangle in the iPad Pro this year. This was my best piece.

I did some other digital art using the Procreate app as well, including this picture, following along with a Youtube tutorial, and adding the silhouettes of some trees to make it my own:

I also continued with some digital mandalas which I save as outlines, and can then colour  as I wish.

This year I acquired an excellent video editing app for the iPad Pro called Luma Fusion, and have been able to make a lot of videos (mostly of the kittens) to upload to Youtube. Very convenient, very user-friendly. One of the best things is being able to use the iPad as a video camera so no transfer of video from one device to another is necessary. All I have to do now is rig up the iPad over my work space instead of my normal video camera.

Continuing with my ongoing embroidery project to make drapes for the bed half-tester, I’ve done a few more pieces, including these:

I’ve also done a bit of knitting, getting involved with a project at church to provide socks for the homeless.

This was supposed to be completed by the end of November, but with everything else going on, I haven’t finished the rainbow pair yet. However, I have been reassured that the project is ongoing, and someone will make sure my socks, once completed, will find a recipient!

That’s pretty much the sum total of art done this year. Not a lot to show for a whole year, is it, but other things certainly have intruded in my life big time this year!

Looking back on last year’s annual review, it’s interesting, as always, to re-read my intentions for the coming year and see how well I’ve done. As usual, the answer is, not very well!! Perhaps I should cease from this unprofitable exercise because every year, I fail!

Here’s what I intended. And whether I succeeded.

• Not making so many cards. Yes, but I didn’t do much else either!
• Books. Yes, to a limited degree.
• Boxes and 3-D objects. No.
• Textiles in my mixed media work. No.
• Felt. No.
• Finish all those UFOs (UnFinished Objects). No, no, no. Hopeless! They remain UnFinished.

So as usual I didn’t do too well on the resolutions scale.

Oh, I can’t help myself – I’m going to list some of my intentions for the coming year, despite what I’ve just said!!

• Finish the Infusions Mini-Album.
• Start using my as yet unopened Distress Oxides.
• Make more books.
• Make more boxes.
• Do more mixed media stuff and incorporate different materials including textiles.
• Make some upcycled clothing from all the bits I bought in charity shops several years ago.
• Definitely finish some of those lingering UFOs.

We shall see how well I do in the coming months!

After such a rollercoaster of a year, I am hoping for a more peaceful year ahead so that I can draw breath a bit, and get back to normal, and have more opportunity to develop my creativity. Also, now that Mum is no longer with us, maybe my hubby and I can have a bit more time together and go on more outings as the weather improves.

Wishing all my loyal followers and friends in Blogland and beyond a very happy and fruitful year ahead.