- I’ve been going to lots of hospital appointments, mainly pregnancy-related (I’m having extra check-ups and scans because of my heart condition), but also the usual regular pacemaker checks and appointments with the cardiologist. I passed my MOT today.
- The garden is a mess. I haven’t done anything with it for months, and Mr C is not the world’s keenest gardener. We may have to enlist the help of gardening friends.
- I’m knitting a baby blanket (for someone else), which is taking quite a long time because it’s a lace pattern and I’m a slow knitter. Only 2 more pattern repeats to go!
- The raspberry plants are still producing edible fruit, even though it’s now December! They are an autumn variety, but even so! I suppose this is because we had a relatively mild autumn this year.
- We forgot to get our Advent calendar out yesterday! Mr C’s mum gave us a chocolate Advent calendar. I am against chocolate Advent calendars (I know, I am a miserable thing, as my mum would say). They just seem wrong to me because surely the whole point of Advent is waiting (not necessarily for chocolate, obviously); not having your chocolate and eating it, as it were. Anyway, I don’t know if I can really bring myself to eat the Advent chocolate, but I will probably succumb to temptation before the 25th (or maybe even the 5th) of December…
- As mentioned in the previous blog post, we have two choir concerts this week.
- The trains have been late quite a lot. This is as annoying as it is predictable. I would like to know whether the train companies calculate their reliability statistics based on when a train actually arrives at a station or when the display board says it’s arrived. These are often two quite different times.
- There have been some nice winter sunsets. I tried to take a photo of today’s but it came out rather blurry and full of trees.
This is a quotation from Paloma, a 12-year-old girl, one of the narrators of The Elegance of the Hedgehog, by Muriel Barbery:
Every time, it’s a miracle. Here are all these people, full of heartache or hatred or desire, and we all have our troubles and the school year is filled with vulgarity and triviality and consequence, and there are all these teachers and kids of every shape and size, and there’s this life we’re struggling through full of shouting and tears and laughter and fights and break-ups and dashed hopes and unexpected luck – it all disappears, just like that, when the choir begins to sing. Everyday life vanishes into song, you are suddenly overcome with a feeling of brotherhood, of deep solidarity, even love, and it diffuses the ugliness of everyday life into a spirit of perfect communion.
We have two choir concerts this week. I don’t think we’re likely to reach the dizzy height of choral singing described above, but I hope we, and the audience, enjoy ourselves anyway.
I’m in a cowl-making mood at the moment! This one is a version of Thick & Quick Ribbed Cowl by Naomi Adams at Ruby Knits. The one I made is a bit smaller than the original design, because I didn’t have enough yarn to make it as big as it should be. I used almost 2 skeins of Big Softie yarn (Sirdar), which is indeed nice and soft, but does have a tendency to ‘fluff’ and split. I found I needed to use a size smaller needles than recommended for the yarn, and it also helped to have metal rather than plastic needle ends as they’re slippier and make for much faster knitting and no splitting.
I think this one will be for my mum.
This cowl was really easy and quick to make – the pattern is Garter Gaiter, by Purl Soho. I made it as a Christmas present for my brother-in-law’s fiancee. She lives in Glasgow, which can be quite a cold and grey place (that might be an understatement!) and her favourite colour is yellow. I called this version Sunshine & Showers for obvious reasons!
I used 1 skein each of Rowan Big Wool, which is probably the nicest yarn I’ve ever knitted with. It’s on the expensive side (for me), but I had a voucher for an online yarn shop from my mother-in-law for my last birthday so I spent it on stuff I would never usually buy! Now I know how nice it is I might be tempted to buy it again, though, despite the cost. My needles were 9mm, 60cm circulars, rather than 40cm, so I cast on 80 stitches instead of 60, but it turned out OK.
The cowl looks nicer on a person than on a hanger, but I don’t like appearing in photos and it’s not really Mr C’s style!
I’ve now finished the bear I was making. He was quite fiddly to make (for me, as I’m used to doing straightforward things like scarves), but I got there in the end. He has a bit of scoliosis and one leg shorter than the other due to my bad sewing skills (the second leg was better), and there was nearly a disaster at the end when his trousers wouldn’t fit and I had to cut the middle seam, but I managed to fit them on him and sew them up afterwards.
The pattern is ‘Christopher and Rosie’ (I only made Christopher) from The Knitted Teddy Bear, by Sandra Polley. I made him for my dad, as not only do they share a name but Christopher’s overalls are very like the ones my dad used to wear in his workshop (AKA the garage) when I was a child.
I’m back on the scarves now!
Last Saturday (12th October) Mr C and I attended The Somerville Foundation Annual Conference, which was held in London this year, alongside the youth conference hosted by the Children’s Heart Federation. It was a convenient location for us and, as usual, was held at a rather nice hotel that provided us with lovely food. The irony of having talks on healthy living followed by masses of not-very-healthy food never escapes us. Although, to be fair, there were healthy options if you wanted them.
The day followed the usual pattern of talks, break, talks, lunch for the morning, but this year we also had talks in the afternoon, whereas in previous years we’ve had workshops. I (and other people I spoke to) actually preferred to have more talks, especially as they were so interesting this year. There was a “Wellbeing Room” and a quiet room, which were open all day so you could drop in as and when/if you wanted a break from the main events.
I won’t go into details about all the talks – there was a lot of information to take in, but here is a brief summary of the what we learned about:
- What is a Grown Up Congenital Heart? This title didn’t really make sense, but the talk itself was really interesting. Dr Shay Cullen from the Heart Hospital talked about how the heart develops and about the history of heart surgery and treatment for various congenital heart defects. It was noteworthy that there are now more adults with congenital heart defects (CHDs) than children with with CHDs – despite this there are about 157 (can’t remember this figure exactly) paediatric heart specialists and 25 adult congenital heart specialists.
- Grown Up Congenital Heart/Adult Congenital Heart Disease Treatments – where are we in 2013? was a talk by Professor Michael Gatzoulis from the Royal Brompton Hospital. He talked about the advances in medical equipment and care, but also emphasised the need to listen to those who actually have CHDs in order to assess how best to care for them. He also spoke briefly about the now-defunct “Safe and Sustainable” review of children’s cardiac care in England and Wales, emphasising that we, as patients, need to keep up with government developments relating to our services, so that we are able to make informed decisions about our own care.
- EPS and Ablation in Complex Congenital Heart Disease. Dr Sabine Ernst, lead for electrophysiology research at the Royal Brompton Hospital, gave a very enthusiastic talk about the latest in treating arrythmia using electrophysiology (EP). EP is used to identify the origin of the arrythmia and then ablating the relevant part of the heart muscle so that it can no longer conduct ‘incorrect’ electrical impulses that cause arrythmia. The new technology uses magnets to guide the catheter into the heart, and because it uses leads that are bendy, this negates the need to puncture through parts of the heart in order to access the part that needs treating. It was surprisingly exciting to see a video of the machine in action!
- Aortopathy for the Grown Up Congenital Heart. This talk was given by Dr Bejal Pandya of the Heart Hospital, and was about problems with the aorta, including aortic aneurysm and coarctation (narrowing) of the aorta, the latter of which is a common form of congenital heart disease, and also something that can be caused by some types of treatment for other forms of congenital heart disease.
- Exercise and How it Affects People with CHDs. Dr Kostas Dimopoulos gave an entertaining but thought-provoking talk about exercise, including information about what types of exercise are suitable for people with particular types of CHD. Contrary to some beliefs about people with CHD, many, if not most, of us are able to, and should, exercise regularly. Unfortunately, medical practitioners used to tell people with CHDs that they shouldn’t exercise, and this belief still prevails in some quarters. I know I need to exercise more! Fortunately, there are ways to exercise that don’t involve going to the gym, including walking, gardening and housework!
- Psychological Care and Assessment of ACHD Patients. Dr Natali Chung and Dr Jane Hutton, and Ms Hajar Habibi from St Thomas’ Hospital and King’s College London talked about their project to improve psychological care and assessment of adults with CHDs. This involves the person completing a short questionnaire at their out-patient’s appointment, then the data collected is passed straight to the consultant so any issues can be discussed and followed up if necessary. They have also produced some self-help leaflets that will be available on the IMPARTS website soon. I found this talk particularly interesting, as psychological care of people with CHDs has long been something I’ve wished more medical professionals would focus on, so I hope that the kind of programme now introduced at St Thomas’ will be rolled out to all other specialist ACHD centres. Dr Liza Morton has also done a lot of work in this area – some of her articles are available on the Somerville Foundation website, as is other information and advice relating to mental and emotional health.
- Interventions and Implantations. Dr Anselm Uebing gave a talk about cardiac catheterisation, which included the slightly disturbing fact that the first doctor to perform a cardiac catheterisation, Werner Forssmann, did it on himself! In the present day, catheters are used to carry out procedures that would previously have required open heart surgery. However, while less invasive, these procedures are not necessarily safer than open heart surgery.
- Healthy Ageing/The Next Phase in CHD Management, by Professor John Deanfield of the Heart Hospital. This was a rather sobering, although at times amusing, talk about the perils of ageing and in particular the affects of an unhealthy diet and lifestyle on our arteries. Like other people with a CHD, I’d (perhaps oddly) thought I might be immune to such things as blocked arteries due to cholesterol, etc., but this was mainly because I thought it would be unfair for me to have that as well as a CHD, which, I admit, it not logical at all. Anyway, the harsh reality is that we are at just as much risk as the general population, of course our existing heart conditions will not make things any better! It turns out that arteries can start furring up from a fairly young age – around 30 – so it is important that we start changing our eating and lifestyle habits as soon as possible. The good news is that deterioration is reversible if we start to make changes now. This talk resulted in Mr C and I agreeing to no more take-away pizza or fish and chips or beer (in Mr C’s case), which is a bit sad but for the best. Also, I must walk up the stairs more at work.
The final two sessions were an update on fundraising, which was encouraging, and a question and answer session where we could ask questions of an expert panel made up of Anne Crump (The Somerville Foundation’s Mental Health Worker), Professor Deanfield, and Dr Uebing.
All the sessions were interesting, but, as usual, my favourite part of the conference was being able to meet with other people who have CHDs – many of whom we’ve met before – it’s always good to catch up. We did this during the day at various times, and also over the annual dinner which was held in the evening. Unfortunately, Some of our friends hadn’t had a good year since we last saw them. If I’m feeling well, sometimes I forget I have a pacemaker, and I don’t think about my heart condition all the time. Meeting friends who haven’t been or aren’t well, and knowing that there are people who are no longer with us due to their heart conditions, makes me realise that I’m lucky to have these times when I’m alright. I know it won’t last. Inevitably, I’ll have to have my valve replaced again, and my pacemaker changed, and I don’t know what else. I don’t know how I’ll be in 3 months or 6 months or how I’m going to cope with carrying the baby when it gets bigger (before and after it’s born!)…but I probably need to write another post about that!
For now, I’m just taking a day at a time and trying not to worry too much about the future, and, as ever, I’m grateful for the help and support I have from my friends with CHDs, as well as for all the technological and medical advances that we’re fortunate enough to be able to access in this country.
Thanks to Mr C for his thorough notes, which have been very helpful in writing this post!
P.S. Forgot to mention, Jane Somerville herself popped in to the conference which was quite exciting. I’d never seen her in real life before. A formidable woman! I must listen to her Desert Island Discs!
I’ve been knitting a bear since June, but I still haven’t finished all the pieces. Partly this is because it was summer, and I tend not to knit so much then, and partly it’s because I’ve been extra-tired/sleepy recently; so whereas I would usually sit down in front of the TV and knit, I’ve just been sitting down in front of the TV and falling asleep!
I just have the paw pads to go, so not much more to do…although after that I have to stuff the bear and sew him up, which I think is going to be tricky, as he’s quite small. Watch this space…