Helping Patients Prepare for Medical Procedures

I have been approached by a lady in the USA who represents a company called American Recall Center, which serves to educate people who are about to undergo medical procedures. They help them to know what sort of questions they should ask, so that they are as informed as possible beforehand, which should alleviate their fears. She felt that with my recent experiences I might be able to help with some input. She has asked me to provide a link for “Patient Safety Alerts” on their website:

http://www.recallcenter.com/safety-alerts/

where people can sign up. Their top priority is patient safety, whatever procedures or drugs are prescribed for them.

It’s very common for people’s minds to go completely blank when confronted with bad health news, and for any sensible questions to go straight out of the window. Hospital staff here in the UK at least, are much more prepared for this nowadays, and will always give people ample opportunity for talking and asking questions, even if it doesn’t happen at the time – they will always be able to see someone a few days later, once the news has sunk in and they have a bit more idea of what to ask.

It is also very natural for people to be very afraid, and to react in unexpected ways – they can become totally numb, or very angry, or tearful, and it is very hard to be rational at such times. It is important to remember that you are not alone, and that many in the past have trodden the same path as you, and the staff are dealing with these issues all the time.

I have had lots of advice from people, professionals and non-professionals, to write down everything as I think of it, because once you get in to your appointment these things tend to get forgotten! When I first saw the surgeon, I had such a long list of questions that I was a bit embarrassed, and he laughed at me because he could see I was hiding it! He was very happy to answer them all, and many were answered before I even had the chance to ask them. I wrote down the answers beside each question as he told me, so that I had all the information. I also wrote down things he told me, for which I had had no questions. When I got home, I read it all through carefully as soon as possible, and collated it into a format that was easier to read and remember. The doctor won’t mind you making notes.

There are many different procedures people undergo, of course. My experience was to have my large bowel and rectum removed because of cancer. When they first told my hubby and me, immediately after I came out of the colonoscopy, that they had found “something they didn’t like the look of” and that I would have to have surgery, my first question was, “Could it possibly be benign?” At that stage, all she would say was to repeat that they didn’t like the look of it. As the conversation proceeded, it was clear that I had a malignant tumour. I was given a sheet of paper with contact numbers on it and the names of the people who would be caring for me in the coming weeks, and was told that they would be very open with me as regards information, and that I would be fully involved in any decision making regarding my care; they wanted me to feel in control of things, which would prevent me feeling too vulnerable and afraid. This was very reassuring, and helps no end in bringing about the very best outcome to one’s procedure, with a faster and easier recovery, with fewer post-operative complications. Anything that reduced stress is good.

Everybody seems to have been able to give me ample and adequate time to discuss things in detail. I had excellent appointments, for example with the anaesthetist (pre-assessment) where everything about the Enhanced Recovery Programme was explained, and what extra care I would need to make allowances for my M.E. and heart problems.  When the plan was changed from simply the removal of the cancerous portion and sewing the ends of the bowel together, to a total colectomy and the formation of a permanent ileostomy, this was fully explained and I had ample time to process the information. It was gently and kindly done. I was involved with the stoma team from the word go, before my operation, to prepare me for what was to come, and my questions were all answered, and information freely given. I was provided with a starter pack with some sample bags to handle and get accustomed to, and some information booklets and a DVD.

I had special concerns about not being rushed into too speedy a recovery after surgery, because of my disability, and was reassured that this would be taken into account. I had a brief problem with one of the nurses and had a vulnerable moment when I felt not listened to, and forced to do more than I felt able to do, and I passed on this complaint, and thereafter there wasn’t a problem. Communication is key. If you have any worries, it is vitally important to tell somebody straight away – if you have told someone not adequately qualified to deal with it, they will pass it on to the right person, or fetch that person to speak to you. I believe it is very important to remember that YOU are the most important person and that the staff are there to care for you and do what is best for you, and they have a responsibility to listen to all your concerns, and that they won’t know what is worrying you if you don’t tell them.

Many people in the past were very afraid of too much information and preferred to proceed in ignorance. This had the potential to generate a lot of unnecessary fear, which affected the outcome of the procedures involved. I think more people these days are wanting to be much better informed. This is largely due to better education, and freely available information on the Internet – people are much better informed generally these days about medical matters, and the mystique of the medical profession is becoming a thing of the past, which is a good thing. Doctors are not gods, and they are not perfect; if they are any good, they will be open to proper balanced discussion, and if you are not getting this, and are feeling short-changed, you have the right and responsibility to say so, not just for your own benefit, but for the benefit of those coming after you. They are doing their job all the time, day in, day out, but we only have one chance at this, one operation, one problem, and it takes on huge significance in our lives, and sometimes doctors need to be reminded how differently these issues affect us, from the way they affect them as professionals.

Whenever an operation, test or procedure is recommended for us, we can feel a lot more secure if we know exactly what is being proposed. For instance, someone undergoing an MRI scan may be terrified because they suffer from claustrophobia, and they may want to know if there is an alternative procedure they can undergo instead, or whether they can be sedated. It is important to understand any risks of procedures, as set alongside the benefits.

I found that doing a lot of online research about my various procedures helped a great deal. For instance, when I knew I was having chemo, and that this would be infused into my body via a PICC line, I went on the Internet and had a look at a lot of information and pictures of this; it was not something I had come across before. I could see that I would have a line coming out of the crook of my elbow for the entire six months’ duration of the treatment, and this would have to be covered up between treatments. With the summer coming on, I didn’t really fancy this, and was worried about knocking it, showering, the risk of infection etc. etc. I did some research into alternatives and discovered the port-a-cath, which is embedded completely in one’s chest with nothing to see at all between treatments. OK, the procedure to insert it is much more complicated than the PICC, involving a general anaesthetic, but thereafter, the hassle is completely minimised, making life very much easier and more comfortable. I decided that this is what I would prefer, so I phoned the specialist nurse and asked if I could have it. She was amenable to the idea, on condition that my oncologist approved, and the approval came back without delay. I felt empowered that my choice was taken seriously and acted upon, and I feel very much more secure and confident as a result. I would have been happy to go along with the PICC instead, if they came up with some reasonable objection to the port-a-cath; it is important that we listen to the experts as well as talk to them about what we want; after all, they have the information and experience and ultimately know what is best for each individual, but there is flexibility in every situation, and there should always be the opportunity for equal, open and reasonable discussion. You and those involved in your care should work together as a team and it is important to develop a good working relationship with them; they will get to know you and know where you are coming from, your attitudes, your hopes and fears. Again, communication is key, making your views and feelings known, and listening to the wisdom of the experts.

For anyone about to undergo any medical procedure who is reading this, I hope it has been helpful and informative. Please do not hesitate to comment and ask any questions you may have, or add anything you may think I have left out. Anything we can do together, to help us get a better service and help us to feel better about what we are going through, is bound to be a good thing.

WOYWW 294

For details of how to join in, please click on the WOYWW logo in my sidebar, which will take you to our hostess Julia’s blog, where all will be revealed.

My first WOYWW of 2015! Sorry not to have been around, but despite my hopes to the contrary, 2015 has kicked off with a whole raft of problems, starting with difficulties with my very elderly mum, and there’s been a lot of stress in the house. My hubby has managed to set up a care package for her now, and we have a team of simply wonderful carers coming in each morning to help her get up, and they are such a great support to us, too. We have had the doctor and the district nurse, and at last the pressure is somewhat off, but in his own wonderful way of trying to shield me from stress, my hubby has taken on much more of the caring role, and now that Mum is more vulnerable, is finding it hard to find sufficient time away from home to enjoy his own pursuits.

As if we haven’t had quite enough going on over the past year, to cap it all, I had my regular two-yearly colonoscopy yesterday (part of the management of my ulcerative colitis) and we were presented with the devastating news that it is almost definite that I have bowel cancer. They have sent the biopsies they took during the examination for pathological analysis, and ordered a CT scan to take place in the next fortnight, and these tests will confirm by science what they know to be true by experience.

I have written a full blog post about this, giving all the details, so I won’t repeat it all again here.

I feel very, very sorry for my wonderful hubby. He could do without this extra burden – will he never be able fully to enjoy his retirement after so many years of hard work in the service of others? He has been thrown willy-nilly into a full-time carer’s role and it seems so unfair – especially after this latest news.

However, no point moaning – together we have to face this, and get through all the various things they throw at us, and I am determined to be a Good Girl and do as I am told, and take all the treatments and examinations and surgeries they deem necessary, and above all to try not to get ratty and difficult with my hubby when the going gets tough – he has enough of that from Mum!! I pray for a thankful heart at all times.

As a result of all this, my mojo has taken a bit of a bashing. Here is my desk this week.

Nothing very exciting on it, is there! You can see the alcohol ink and embossed backgrounds I made a while ago, ready to make into cards for my stash (still not made up) and a doyley and some paper napkins ready to be put away, and the rest is general detritus and my usual regular-use inks and other materials. I simply must organise a better system for the heaps of partially used pieces of kitchen paper on the left (mostly just out of shot – I wouldn’t inflict it on you!) – it’s a horrible mess that irritates me every time I work in there!

Just so you don’t feel totally deprived, I have managed to do a bit more on my embroidered pieces for the bed decorations, which I’ve already posted about, but here’s an example:

Hopefully I’ll feel like working on these a bit more this week.

I have also acquired some more RUBs (Really Useful Boxes) and have been having fun doing some reorganisation of storage in my ARTHaven. It’s a great improvement on the messy piles of workshop tools, where I’d never be able to find anything.

Not too much time or inclination to be in my ARTHaven over the past few days. Over the weekend I was going through the dreadful preparation for the colonoscopy, and I have been very busy on the computer since yesterday afternoon, contacting various people to tell them my news, and filling in my various forum friends. I am overwhelmed by the amazing and wonderful support I am already receiving from so many lovely friends around the world.

With your prayers and support, I am sure my hubby and I will beat this. Today I am in fighting mood, but am realistic enough to know that this won’t necessarily last. I have decided to clamp down on my imagination to prevent it running riot and leading me into worst-case-scenario situations – that way leads to despair, and that is NOT Shoshi’s way!!

I have been in contact with our own wonderful Shaz, and she agrees that it will help me a lot, as it has helped her on her ongoing journey, to create a diary of my experiences, not just to help others going through the same thing, but also to help keep my own thoughts in order, and keep abreast of the various events which will take place. With my M.E. brainfog, this is a very good idea because I’m quite likely to get totally confused by it all! I have therefore begun a new page (see tabs along the top of my blog) entitled “My Cancer Diary.”

Today my hubby took me out for lunch, as a special treat after my colonoscopy, planned in advance. To see where we went, have a look at this blog post from the summer, when we went with friends, and I took loads of photos – it’s such a fascinating, quirky old place, full of intriguing things, with fine old beams and crooked walls. We had a lovely meal – a real treat, especially as I haven’t been out of the house properly for several weeks, except to visit the hospital.

Have a great week, everybody, and may our mojos never die or go on holiday.

The Result of my Colonoscopy

This morning I went in for my colonoscopy. I had my first one in August 2013, as a result of a call-back from a positive test result on my first bowel cancer screening test – this is a test undergone by everyone in the UK when they reach the age of 60, and at regular intervals thereafter. My first one revealed blood in the stool, which totally freaked me out, and I was told I had to have a colonoscopy so that they could establish the cause.

What they discovered was that the whole of my large bowel was affected by ulcerative colitis, an inflammatory bowel disease. Many years ago I had suffered from IBS, which cleared up when I moved to get married, but which returned with the onset of M.E. (or so I thought) – the condition is very common with M.E. and I simply treated it with Immodium and tried to get on with my life. I was suffering from chronic diarrhoea, with on average 10 visits to the loo daily, and while this was unpleasant, I managed it the best I could.

After my colonoscopy, I began seeing a gastro-enterologist regularly at the hospital, and was put on colitis medication (Pentasa), and told that I would have to have a colonoscopy every two years, not just to check on the state of my colitis and how well the medication was working, but also to check for bowel cancer which is more common in sufferers from inflammatory bowel disease.

This regular colonoscopy came due today, and as usual I had to go through the dreaded bowel preparation over several days, with two days of low fibre diet, followed by a day of clear fluids only, and the taking of powerful laxatives to clear the bowel, resulting in visits to the loo every 10 or 15 minutes, and a very sore bottom, despite gentle hypoallergenic moist toilet paper and Vaseline (petroleum jelly)! Yesterday was a very exhausting day and I alternately drank lots, watched DVDs, ran to the loo, and slept, spending the day in bed, a few steps from the en-suite bathroom.

My appointment was at 10.45 this morning and I went in early as they were running ahead of schedule. I was soon under sedation and not too aware of what was going on. It did take me a while to wake properly, and they kept trying, and giving me oxygen, and taking my blood pressure. Eventually I was fit enough to get dressed, and was taken into a room and offered sandwiches and tea – quite delicious, and making me feel quickly a lot more human!

My hubby came back to collect me, and we were taken to another room where a specialist nurse came in to discuss what they had found during the procedure.

As a result of taking the medication for 18 months, the areas of inflammation have been significantly reduced, now to only one area, with the rest of the bowel looking normal. This is an ongoing, lifetime treatment which does not cure the disease, but treats the symptoms. This is a good result.

However, the main news was not good. They found a patch that they didn’t like the look of at all, which was causing some constriction in the bowel, and a bit further round, a polyp. Normally they remove polyps during the procedure (they can be pre-cancerous) but because of the problem area, they left it alone for now. They want me to go back for a CT scan, and in the meantime they will be sending the biopsies they took to the lab for analysis. Also, I have to see an anaesthetist to assess my fitness for surgery – this is usually done in the form of a cardiac stress test on a treadmill or exercise bike, but in view of my M.E. this is not feasible, but no doubt he will think of some way of testing me!

I asked if it was possible that the tumour was benign, but the nurse would not answer in the affirmative. She would only repeat that they didn’t like the look of it. They have seen many, and know from the initial appearance what they are likely to be, and further tests are performed to confirm this initial suspicion, so I think it is pretty well certain to be malignant. She wouldn’t have said as much as she did had they not been pretty certain, and she said as much as she could under the circumstances, with sensitivity and honesty.

I asked her about my chronic mild anaemia, which I had always put down to bleeding from the bowel as a result of my colitis. She said that anaemia can be a symptom of bowel cancer.

I have certain things in my favour. One is the location of the problem area. The nurse said that this was the best position for it, because the affected section could most likely be removed, and the cut ends sewn together, without the need for a colostomy. Secondly, it may well be possible to remove it with keyhole surgery, which is a lot less traumatic and would involve a much shorter stay in hospital. Early diagnosis is also in my favour, of course, and it is likely that they will be able to remove it and I shall be fine. Only after the results of the forthcoming tests will they be able to decide on what treatment regimen will be necessary, and they will discuss this with us when the time comes.

Knowing all these positive things in my favour is a great help, of course, but this news is nonetheless a great shock. I need time to process it. I don’t know why one tends to think one is immune to such things, thinking it’s something other people get, but not me… we know that cancer is a very common disease and is no respecter of persons, so why should I be especially favoured and not get it? I think of all the people I know who live happy, prosperous and healthy lives and never have anything wrong with them, and here’s me with all these health problems, and putting up with Mum as well and it seems so unfair… But I am NOT going down that road, because everybody knows that at the average Pity Party there is only one guest – yourself!! I do feel very sorry for my poor darling hubby though – he’s had so much on his plate this past year, and this seems to be adding insult to injury, and I am the last person to want to add to his burdens. The poor man has only just retired, and has had hardly any opportunity to enjoy his new status, and now this…

I will keep you up to date with developments.

Decorations for Half-Tester, New RUBs and a Health Update

I haven’t been blogging much lately because we’ve had major problems at home with Mum and I’ve had a bit of a reaction and felt very poorly, and the stress has made my creative mojo take a walk! However, I’m feeling a bit better now, and now I’ve started the embroidery on my bed decoration pieces, this is something I can do while in the sitting room, and I am making slow but steady progress, and really enjoying it.

Embroidery

I have completed the embroidery on a few more pieces – one or two I had worked on before, but felt they needed a bit more, and some starting from scratch on the machine applique. Here are the four latest pieces:

and here are the detail shots of each one.

I added a lot of French knots on this one! Love the bobbly texture.

It’s very disappointing how photos never show up sparkly stuff – the metallic threads look quite lost in these photos, looking more like raffia! The top one has red and gold lurex thread, the second two gold, and the bottom one has copper. The little shi-sha mirrors don’t show up that well, either, but they really twinkle in the light.

If you look closely at them, you can see that the shi-sha stitch encases the edge of the little mirror, like the setting of a cabachon jewel. The stitch is a variation of chain stitch with two parts to it – you stitch alternately around the four-sided scaffold you work initially to hold the mirror in place, and into the background fabric. I love doing this stitch. You can use it to attach other things too, and I’ve done experimental pieces in the past, attaching shells and flat pebbles. I’ll have to dig out the piece sometime and photograph it, because I don’t seem to have any photos. I did a talk on shi-sha at the embroidery group I used to belong to in Plymouth and this was one of my demo pieces. I also made this purple bodice with a mount-board frame as an example:

Here is a little box I made, using the technique. To open the box, you squeeze the ends together. There is a shi-sha mirror on each of the three sides.

Looking back at this work, it makes me think I really should be getting back into embroidery again – I love it!!

Hopefully I’ll have some more photos of the bed decorations to show you soon. I’ve got a lot of work to do before I can start making them up, and then I shall make tassels to go on the end of each one – something I am really looking forward to doing, and I am already collecting images on Pinterest for my inspiration.

ARTHaven Organisation – RUBs

I have started adding to my existing collection of Really Useful Boxes (RUBs) again. Eventually nearly everything in my ARTHaven will be stored in these, and I am also collecting them for the shelves under the counter in my en-suite bathroom. I am delighted that after doing a lot of research and endless measuring and comparing, I have discovered that there are boxes that fit exactly in the various spaces I have! The effect is so much tidier than my endless scruffy cardboard boxes; they also keep the stuff better, and you can see through the box to see what’s in it. They have a nice uniformity of appearance whatever their size, and are starting to make my ARTHaven look really good! As the pennies allow, I shall add more in time.

On the RUB website, the prices are quite reasonable, but you have to pay postage if your order is less than £500 (and I certainly can’t afford to pay £500 all at once for boxes!). I have discovered a lot on Ebay, and you can sometimes buy multiple packs (2, 3, 5, 10 etc.) of a particular size, and many of them have free postage. Even when the price per individual box is a bit more than on the RUB website, in the long run it saves money because the postage on the RUB website bumps the price of each box up quite a lot, and also, you don’t have to buy a whole lot at once, and there are some good deals to be found.

In this photo of the floor units under the window, you can see I’ve supplemented my 9-litre collection, and also got some of the 9-litre XL boxes, which have tall lids. These are very good for storing bottles and jars, and anything that sticks up above the top edge of the box. The capacity of the box itself is the same as the regular box. The shelves in the floor units are just right for both these sizes. On the left, this large pull-out unit on casters had been a complete mess since we moved, full of a mixture of Dad’s old workshop tools, some of my tools, brackets and fixings, and my decorating stuff. This has now gone into the RUBs and once I manage to spend some time organising the contents properly, I should be able to lay my hands on what I want with ease.

I love how the blue handles clip in place, locking the lids.

Moving over to the storage area on the other side of the room, I have the free-standing cabinet that the previous owner of the house left in my bathroom. I am delighted that each of the open shelves in the centre exactly accommodates one 19-litre RUB. I had a couple of these, and have now completed the set.

Unfortunately, because the doors occupy some space, I cannot get them in the cupboards, but that doesn’t matter because when closed, the contents don’t show anyway. The cupboards are full of fabrics, picture frames and Ikea mirrors for altering, amongst other things.

On the wall opposite the window is the large wall unit, and in this picture you can see the progress I am making. On the left, the shelves are filled with plastic containers that I got years ago from our local supermarket – they had contained things like coleslaw for the deli counter, and I asked them to save them for me, and some of them had margarine in them – I used to buy large quantities for baking, and saved all the boxes which have been incredibly useful over the years – in their first incarnation they were kitchen storage boxes, and like many of my kitchen things, eventually found their home in my ARTHaven! These containers will remain, and not be replaced by RUBs. They contain haberdashery. The centre shelves now house two 9-litre RUBs end-to-end, and one of several of the long 22-litre boxes I have, which are useful for storing rolls of paper. Not all the RUBs stack with each other, but I have found that I can stack two 9-litre boxes end to end on top of a 22-litre box. The contents won’t necessarily stay as they are – the whole thing is still in a state of flux.

I am so looking forward to replacing the untidy cardboard boxes! I shall be getting some 25-litre boxes to go on top of this wall unit, and on top of my mixed media wall unit over the other side of the room as well. The shelves on the right of the large wall unit will continue to be used for drawing stuff (my Zentangle stuff is there) and I shall keep the pretty box on the top shelf, which houses my metallic embroidery threads and embroidery sequins and beads. It all just needs tidying up and organising a bit better.

The bottom shelf in the middle at the moment holds all my soap making stuff. The brown plastic box on the left has essential oils and other liquids for soap, beauty and cleaning products I am going to make. The rest of the soap stuff will go in RUBs once I get them.

Once I get the large black shelf unit in the storage area better organised, I will show you photos of that. I am very thrilled that this unit, which is all that remains of a much larger unit which came out of a shop that was closing down, is exactly the right size for some under-bed storage boxes I had (not RUBs), and also accommodate the 22-litre RUBs end-wise, and the 9-litre and 19-litre boxes.

Health Update (Not TMI, I hope!! No need for the more squeamish among you to read on…)

I am now in the throes of preparation for my regular two-yearly colonoscopy which is taking place on Monday morning. On Wednesday I stopped taking my colitis medication and also my iron, and yesterday was the first day of the special low-fibre diet you have to go on. Today is the second day. During these two days I am not allowed any fruit or vegetables, and can’t have my lovely breakfast porridge (oatmeal) and have to have cornflakes instead – I always say there’s more nourishment in the packet than in the actual cornflakes! They are soooo boring… I can have white bread (I am eating French bread which I love) and butter and other dairy stuff (milk, yoghurt, rice pudding etc.). I can have potatoes with no skins, and white rice but no whole grains or nuts. I can have protein such as chicken and fish, and I can drink apple juice, tea, coffee and plenty of water.

On the final day (tomorrow) I cannot eat any solid food except jelly, for 24 hours before the procedure, but if I have my breakfast at a reasonable time that will be OK. For the rest of the day it will just be clear soup, apple juice, water, tea or coffee without milk (which I don’t like so will avoid, apart from green tea with honey). I am allowed jelly, and jelly babies for energy! I am encouraged to drink plenty of fluids right up to the time of the examination.

Tomorrow the worst part will be taking the powerful laxatives to purge my system. I have to take a bottle of senna, and then twice during the day, a sachet of Picolax dissolved in water. The effect of this is severe and acute diarrhoea, so I intend camping out in the bedroom so I can make frequent quick dashes into my en-suite bathroom! Previous experience has shown that my rear end gets very sore, and they recommend the application of Vaseline (petroleum jelly) to soothe the skin, and I am also prepared with two packs of unperfumed moist toilet tissue. The whole business is most unpleasant, and to make it easier, I am planning on surrounding myself with my laptop, a collection of DVDs that I’ve been saving for the purpose, my embroidery, books and my iPod!! Also containers of jelly, jelly babies, a Thermos of my best Jewish chicken soup (of which I could drink gallons, no problem!) made in advance, and jugs of water and apple juice!! With the kitties for warmth and company, I should be fine.

On Monday morning my hubby will drop me off at the hospital, and they will give me a sedative before inserting the camera into my bowel. They usually need to pump you up with CO2 (they used to use air, but with the muscle relaxant drug they give you, this caused an unacceptable amount or discomfort from wind retention afterwards – the CO2 is absorbed painlessly into the body). Because people who suffer from ulcerative colitis are at higher risk than the normal population of developing bowel cancer, they will look for pre-cancerous polyps and remove any they find, and will probably take a biopsy as well. The procedure really isn’t too bad, and afterwards, because of the sedative, one remembers very little about it. There is a recovery period, and then they will give me some food. Last time I asked for brown bread egg sandwiches and a cup of tea (I had two large cups) and it tasted like a king’s banquet – even the disgusting hospital tea!! Once I am home, I can start eating normally again, and go back on my medication.

I’ll let you know how I get on…

2014–What a Year

WOYWW visitors – please scroll down to the first post for today.

The second of three posts for today, and the first of two “update” posts – I realised there was going to be too much for a single post, because such a lot has gone on this year. I have therefore decided to devote this first one to personal and health issues and other miscellaneous things, and to make a new post about my creative endeavours during the year, of which there have been many!

I can’t believe it’s that time of year yet again when I look back on the months that have passed and take stock, and look forward, hopefully always with optimism, to the year ahead. This is the fifth annual review post I have made – have I really been blogging this long???

We have celebrated our first year living in our new house, and reaped the benefit of so many months of upheaval, anxiety, stress, joy and fun that took place during the previous year, during the renovations, and this year we have been able to enjoy to the full all the carefully planned alterations which have made life easier for everybody.

One of the things which has been the most fun was finally to be able to move into my beautiful new ARTHaven and get it up and running and planned exactly how I wanted, so that it at last became my favourite room in the house, where I can immerse myself in art and creativity and shed the stresses of the day, in an environment carefully designed and planned by me, and brought to fruition by our wonderful builders, to enable the creative process to take place with the minimum of difficulty.

Heath Issues

The year 2014 has been characterised by a series of health crises for us all – myself, my hubby and my mum, who lives in a flat occupying half the downstairs of the house. Just when we seemed to be entering a more stable period, something else happened, until I got to the stage when I wondered, “What next?” I know that compared with some people, our trials have been light, but nevertheless sometimes they have seemed hard to bear.

At the beginning of the year, now that we were really settled in, my hubby went up country to pick up my buggy (mobility scooter) which had belonged to my uncle, and this was installed in the garage with its own power supply, and enables me to trundle forth at the magnificent heartstopping rate of 4 mph to do my local errands – church, shopping, visiting etc. This is liberating!

In February I caught a nasty throat infection which left me coughing for months, and eventually in the summer I saw the doctor about it, and it became clear that the cough was a result of GORD (Gastro-oesophageal reflux disorder) and I was put on medication for this (Omeprazole) and referred to an ENT surgeon at the hospital for a proper examination, which revealed that there was still evidence of inflammation so I was put on revolting Gaviscon which is a sore trial to take!!

In the summer I also had problems with an extremely dry mouth, but after seeing another hospital consultant, a disease cause was ruled out, and we came to the conclusion that it was just another recurring M.E. symptom raising its ugly head again. I was given some good advice, though, about nasal decongestion which has helped a lot.

I suffered very badly this summer with swollen ankles and again sought medical advice. Several pieces of advice bore good fruit, and I also invested in a Circulation Booster which helped a lot. The cooler weather helped considerably, later on.

Since our return from holiday when I was shocked at how much weight I’d gained, I decided to embark on the famous 5:2 diet, and am happy to report that having hit another plateau recently, with my weight remaining constant for several weeks, I have lost a total of 2 stone 3 lb (31 lb) in six months. I have another 2 stone to lose until I am at the optimum weight for my height, but it is great knowing that I am now officially “overweight” and no longer “obese”!

In the summer also, I was diagnosed with mild anaemia, probably as a result of my ongoing ulcerative colitis, and have been on ferrous sulphate ever since, although now on a reduced dose, with my Hg levels being checked monthly.

In August I had my regular gastro-enterology appointment at the hospital to check on the state of my ulcerative colitis, and I have a colonoscopy coming up in January 2015 (something that has to happen every 2 years). He is pleased with my progress and how I am responding to the medication (Pentasa (mesazaline)).

However, my main health event of the year was a coronary artery spasm causing severe chest pain at the end of July, landing me in hospital for a couple of days. I’ve had no recurrence since, apart from a few periods of much less severe chest pain, all of which have been brought on by stress. I have a nitro-glycerine spray for such events. Coming out of hospital I became a soggy emotional heap, and when that passed, I moved into a period of several months’ mild depression, feeling generally “out of sorts” with myself, which is apparently a very common reaction to any cardiac event.

My M.E. continues much the same. The condition appears to have “bottomed out” and while I am not improving, neither am I continuing to go downhill as I did at the beginning. I have many days when I am pretty well unable to function and need to rest, which can be frustrating at times, but there’s nothing to be done about it and one just has to go with the flow and try and be as sensible as possible. Having a new adjustable bed is giving me more comfort and better nights and I no longer hanker after my wonderful hospital bed that I wanted to take home with me! This is also helping a lot with the reflux. Life is certainly easier with the renovations we had done in the house to suit my needs and also that my hubby isn’t having to run around after me quite so much as in the past.

A few weeks ago my hubby had an accident on his motorcycle and broke his wrist. He was in plaster for several weeks, and is now wearing a wrist splint after the latest X-ray revealed that the bone had knit. He will have another X-ray in a couple of weeks’ time and hopefully then will be back to normal. It feels painful now the rigid support of the cast is gone, and it will take time for it to regain its full strength. The worst part of it from our point of view was that he was not allowed to drive with a cast, and with all the running around he has to do on our behalf, this added to the already considerable inconvenience for him.

Mum’s health has presented us with several crises this year – firstly the common occurrence of minor injuries to her paper-thin skin necessitating hospital visits and the regular and frequent re-application of dressings. She is now very deaf and also needs her ears syringing regularly. She has also started suffering a series of TIAs (mini-strokes) and has been diagnosed with AF (atrial fibrillation) and is now on warfarin, which necessitates weekly visits to the surgery for her blood to be tested to determine the dose. Her short term memory is poor, and since her most recent bout of TIAs she has become more difficult, which is stressful for me, and my dear hubby is trying to shield me as much as possible, by taking on most of the contacts with her. We both experience ongoing low-level stress, interspersed by the high-octane version brought on by frequent confrontations with Mum on various issues. How true it is that whatever one’s personality, this tends to be exaggerated in old age.

It wasn’t just us humans in the family who had health issues this year. Our senior kitty, Beatrice (aged 14), after being registered with our new vet, had four teeth extracted, and was discovered to have a growth in the back of her neck that had to be removed, which proved to be quite major surgery, but was fortunately proved to be non-malignant. In order to protect the wound, she wore a premature babygro!

Then followed a series of urinary tract infections which have become ever more frequent so that she is more or less constantly on antibiotics now, but keeping pretty well, and with a good appetite. She is too thin, and with her delicate stomach has to be on a prescription diet, and requires frequent small meals in order to prevent vomiting. She continues to be a great character and much loved by us all, and she and “Granny” have developed a strong mutual affection and she enjoys spending time with Mum in her flat. The vet, “Uncle Luke,” is extremely fond of her, and everyone down at the vets’ has a huge soft spot for this very unusual kitty who is bursting with character and a bit too intelligent for her own good sometimes!!

All these health pressures have definitely been helped by having my hair permed again in the summer! Luuurve the curls. Thank goodness for good hair days, fragrant baths, kitties, art, and my wonderful hubby.

Technology

I was devastated this year that my faithful old sewing machine (21st birthday present) bit the dust, but delighted to get a new Brother machine, which, as things have turned out, I haven’t had a lot of time to get up and running – just a few boring household jobs to be done, and I still have to look up in the book how to thread it!!

At the beginning of the year I invested in an iMac and after an initial trial period trying to run both the Mac OS and Windows on it via a system called Parallels, eventually came to the conclusion that Windows didn’t work well enough on this for me, and I would continue with my two (now fairly elderly but excellent) laptops for Windows, and use the Mac pretty well exclusively for video. I had a brief experience with an upgrade to the latest version of Pinnacle video editing software on Windows but as with earlier versions, was frustrated by its instability, and decided to bite the bullet and move to Final Cut Pro for Mac which has proved to be a very successful move indeed. With my new video camera setup I can now produce good quality HD videos and the program is a total dream to operate – makes me wonder why I didn’t stop messing about years ago and spend the money and get serious – I’d have saved a great deal in the long run! I have not had as much time to create videos this year as I would have liked – it is a highly time-consuming process but also very creative and enjoyable.

The House

Finishing touches to the renovations included the installation of solar panels in the summer. We had been at a bit of a loss to know which company to approach, but our visit to the County Show was very fruitful, as we were able to speak one-to-one with several companies and come home armed with fliers. It was not hard to make our final choice, and the work went ahead very smoothly.

Personal

The major event of this year was my hubby’s retirement in the summer. He continues to be quite overwhelmed by the tremendous send-off he received, and all the gifts, cards, letters, emails etc. etc. I was a bit worried that he might feel the loss of role quite badly but he has had an incredibly busy time since, being carer for both Mum and myself, and various other commitments, but I am glad that he has been able to fit in quite a few days out doing the things he enjoys the most, and spending time with his friends. In the summer, for the first time he was able to volunteer on the local annual archaeological dig on a full-time basis. Knowing how precious these times are for him, I guard them jealously and try not to add to his commitments by asking that he drive me to things that aren’t strictly necessary, but we have had some nice outings together, and had a wonderful holiday (our first for 4 years) in the summer, coinciding with my school reunion, and the opportunity to immerse myself in some fabulous art. Our major and best day outing was to Bristol to view the Kaffe Fassett exhibition (click on the link at the top of my sidebar for pictures).

Since moving here, I have found an excellent church to join, and was admitted to full membership in the summer. I am thrilled that is is right on the doorstep and takes only a few minutes on the buggy to get there. I have made new friends there and the quality of worship and teaching is excellent.

WOYWW 289

For information on how to join in the nosey fest where we all see what everyone has on their messy work desks, please click on the WOYWW logo in my sidebar, which will take you to our hostess Julia’s blog.

Sorry folks – couldn’t get online last night and then this a.m. forgot all about uploading this post and signing up for WOYWW! Better late than never, I suppose. It is still Wednesday, after all!!

My main work area has been cleared now that I have finished my recycled mini-album, so nothing of interest to photograph! However, this is the work surface on the other side of the room, where I have dumped all the soaps, bath bombs and bath melts that I’ve made in the soap making class, together with some wrapping materials, ready to wrap them and prettify them ready to give away! You can also see the box which contains my essential oils and other bits and pieces, and the bottles of my home-made infused lavender oil.

Please see my previous post for details of the final three soap making classes and some photos of the soaps etc. that I made. I simply hadn’t the time to keep up to date with posting about those, being so busy completing the album, and there’s been lots of other stuff going on, too. My mum had 3 TIAs last Thursday and in the late afternoon we found her on the floor and couldn’t get her up, so she ended up in hospital for a few days. She made a good recovery and came home again yesterday. We are busy trying to get things organised for her so she is safer around the house. There is no guarantee she won’t have more of these mini-strokes and they could be the prelude to a big one, but all we can do is continue to give her her warfarin and hope for the best.

With my hubby’s broken wrist and not being allowed to drive, this has complicated matters considerably. Thank goodness all our amenities are close by, because we’ve had to rely on taxis and lifts. It is likely that he will have to remain in plaster for another four weeks after Christmas until they are sure that the tiny, but very important, bone, has mended properly. Never rains but it pours, does it.

I have heard from the hospital with details of my upcoming colonoscopy which is now to take place in January. That will be nice to look forward to in the New Year (not…)!

Yesterday I managed to pick up my knitting again and am working on the final stage, picking up the stitches for the neck. I am hoping to finish it this week and hopefully have some photos of it for you to see.

Happy WOYWW, everybody, and again, my apologies for visiting so few of you last week.

Health Update–September 2014

Following my last health update, I have been taking the Omeprazole for some time now, and it definitely seems to be helping with the reflux, although I am still aware of something at the back of my throat. I am not coughing as much, and haven’t been disturbed at night by acid in my throat, but the GP said I should definitely see the ENT surgeon just to make sure everything was OK.

I had my hospital appointment today, and after a brief consultation he shone a light in my mouth, and palpated my neck. I thought that was going to be it, but no… he then sprayed some local anaesthetic up my nostril and proceeded to poke a light up my nose!! It was very small, on the end of a flexible tube, but despite the local anaesthetic, it felt like a lamp-post! It was pretty unpleasant. My nasal passages are apparently very narrow (which would explain why my nose is so often blocked). He said he needed to examine my vocal cords and the back of my throat in general, and said that there was still evidence of reflux there.

He prescribed Gaviscon Advance for six weeks, and said to continue with the Omeprazole, and then see my GP. The Gaviscon puts a blanket layer over the top of the stomach contents, and along with the acid-reducing Omeprazole, this should sort the problem. He also recommended propping the head of the bed up on bricks to elevate my upper body so my hubby is going to sort that – although what it will look like I don’t know – it’s a four-poster and might look like a ship on the high seas!

I saw the gastroenterologist a few weeks ago about my ulcerative colitis, and he continues to be pleased with my condition, which is responding well to the Pentasa medication. I had thought that my next colonoscopy wouldn’t be until August 2015 (two years after my first one) but he wants me to have it in February, which will be something nice to look forward to after Christmas (not…)!

Following a recent blood test, I have been told I am still mildly anaemic, so continuing with the iron for another few weeks. I am probably bleeding from the bowel although I’m not aware of it, but it could be enough to lower my haemoglobin sufficiently to need medication.

I bought a circulation booster from Ebay and it really helped with the swollen ankles. Now the weather has cooled off, the problem really isn’t so bad, and I have stopped using the machine for now, but it’s there if I need it.

Since my recent heart attack, I haven’t really been feeling myself – not exactly depressed, but feeling under the weather and a bit down, and rather unsettled. This is very unlike me because I’m usually very upbeat and bubbly. My creative mojo seems to have departed a bit recently, too. I had put it down to the constant low-level stress I suffer from with Mum in the house, but the other day I thought to myself that whenever I’ve had a day feeling like this, after a good night’s sleep the feeling generally disappears, but recently this has not happened. I mentioned it to my hubby at this point, and he said he wished I’d said something before, because he knows that it is very common indeed for people to get depression after a heart attack. I had no idea, but since then have spoken to several people who have experienced it. My hubby told me to Google it, and 18,900,000 search results appeared!!! He said, “Well, get reading then…” and I said if I read all that lot I’d be severely depressed by the end, not to mention still being at it well into the New Year!! It made me feel a lot better knowing that this was quite normal, and although I felt very down a couple of days ago, I’m feeling very much better again today.

I think I have to accept that it’s going to take time, and that my whole system suffered more of a shock than I was aware of. The most important thing is not to worry, and to know that it will pass. I don’t feel it’s bad enough to approach the doctor with.

My M.E. is ongoing, of course, and fluctuates from day to day, but there’s nothing new to report there, except to say that the dry mouth problem was probably a recurrence of this very common M.E. symptom, which has now gone into abeyance again. I have been continuing with the Sterimar routine before bed, and making sure my nose is as clear as possible before I go to sleep, and this is helping.

Ending on a cheerful note, I have been doing the 5:2, or “Fast” diet since our return from holiday towards the end of June, and am happy to report that this is the most brilliant diet I’ve ever been on. Because you reduce your calorie intake on only two days a week, and eat normally for the rest of the week, it is sustainable. Having to watch one’s diet every day, and deprive oneself of all the things one enjoys, soon becomes very tedious, and this is why so many people give up, especially when the weight loss tends to plateau, sometimes for several weeks.

I have had a three or four week plateau when I lost no weight, but I’ve stuck with it, and over the past couple of weeks, the weight loss has started again, resulting in a further half-stone coming off! I have now lost a total of 1 1/2 stone since June, and I am highly delighted. It doesn’t seem to be showing much – at least, not where I want it to (my stomach and bum) but one or two people have asked me if I’ve lost weight as it’s showing round my face, apparently!

So, generally speaking, I am pleased with how things are going. I am hoping that will be the last of the hospital visits for the rest of this year, at least for myself!

Mum, on the other hand, seems to be constantly going to the hospital or GP surgery these days. She had a TIA (transient ischaemic attack, or mini-stroke) a little while ago and has been undergoing tests since then, resulting in a diagnosis of atrial fibrillation (AF) and she is now on Warfarin, necessitating a weekly blood test until they stabilise the dose. Her blood pressure continues to be very high, and she is therefore at increased risk of another TIA or more serious stroke. She has bashed her leg again… and a few weeks ago, Phoebe, one of our kitties, scratched her arm, both of which needed an A&E visit and dressings which required changing – each time she has such an injury to her paper-thin skin, she digs her heels in and refuses point-blank to go to the hospital and we have to go through the whole process every time, of my hubby getting really stroppy with her and bullying her into submission! She never learns… she has no idea how serious such things can be at her age (93), and how they could easily get infected and lead to ulceration and worse. Oh well, my sister can deal with it for 10 days – we are currently enjoying a lovely break! After everything that’s happened recently, I think we deserve it – my hubby especially, as he is the one who has to drive her, and pick up all the prescriptions, etc.