Monthly Archives: September 2013

Curiouser and curiouser

Have had an “interesting” morning jumping between medical appointments. Two hours at the Eye Hospital – examined by 3 different ophthalmic clinicians, all looking at different things.

  • I do have cataracts but they are not at a stage that anything would be done, so that can sit on one side for the moment.
  • The vision problems, i.e. seeing things as if through a streaky window of Vaseline, it appears could be caused by the chemo (or not). This seems to be exacerbated by not having my vari-focals positioned correctly (oh…that must have been when I dropped and stood on my glasses…or when I accidentally sat on them, or maybe when I pushed them up off my face when they steamed up when I was cooking and they ended up in the tomato sauce …the choice is endless..but fortunately easy to resolve. Cleaning my glasses more often was also suggested as a possible aid as was changing the scratched lenses!
  • The “new” problem is that I have a problem with my saccadic eye movements (who knew that one even had them?) – I was given the correct term for my latest condition but instantly forgot it, as you do! It is similar to nystagmus but the jumping eye movements I have self-correct in a few seconds. Nonetheless I am being referred to a consultant who specialises in this condition to see what he can suggest so will then be attending 2 different clinics at the Eye Hospital as well as Oncology and Diabetes Centre. I feel as if I need staff to manage all these appointments – it’s turning into a full-time occupation. Who knows maybe I will soon be seen in several units in each hospital…Can hardly wait!

Then it was a rapid turnabout and down the hill to the GP in time for blood tests…then flu jab with a timely return home moments before the arrival of the Ocado fridge stockers who came fully laden so that I can rest easy during chemo week. Fridge now packed to the gills, freezers only just able to close, fruit bowls overflowing – so all’s well in my world!

I am exhausted (yet already wired from starting the steroids today) and as ready as I am going to get for Round 3 tomorrow morning.

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It’s 1.30 am – late night ponderings

Background soundtrack to my writing….

Somewhere O’er the Rainbow – Israel Kamakiwo’ole , (the soundtrack to Dr Mark Green final scenes in ER ) Girl from the North Country – Rosanne Cash, It Ain’t Me Babe – Johnny Cash, American Pie – Don McClean, Pata Pata – Miriam Makeba, Old Man – Redlight King…which may explain everything!

Lovely evening surrounded by some of the many people I Iove the most over a delicious dinner. I have received the most beautiful flowers from my lovely ex-colleagues at Marston (you know you are, I worked with you all for long enough!), an offer to be taken out by another ex-Marston colleague and a great looking crime novel from yet  another ex-colleague and bottles of wine from a close friend (also with breast cancer) who is celebrating her 50th birthday tomorrow but I have had to opt out of the party – so she brought me  bottles so I can drink-a-long! That’s only this afternoon (and I slept through most of it!) ….how can I possibly give up with this colossal back-up team? There are also all the resounding memories of conversations with current colleagues from yesterday who probably don’t even realise how much they are pulling me through this ordeal…On any given day I have family, friends, support on my doorstep..on e-mail…on the blog…on the phone…there is no space for a down moment despite the prognosis. Thank you – I couldn’t do any of this without you….all of you…

Eyesight may be fading, body may be playing me up, blood sugars may be all over the shop but hey…I have the team to beat all others so will just deal with all the above! But…surely it must be someone’s else’s turn soon, surely?…Meantime I am amazed to tell you that I have had 8500 hits on this blog since I started it 8 weeks ago – more than 1000 hits a week – wow! Multiple hits in Oman, Belorussia, Russia, Pakistan as well as all the countries where I actually know people!

I am living for the moment. Each day is precious and I am still struggling to believe just how lucky I am to have such amazing friends (from all over the world), family, colleagues, ex-colleagues and neighbours. You really do bring just everything to the “party” even if you may want to change the soundtrack!

Up to my eyeballs

Yesterday I felt (in relative terms) much like a regular person…I both went to my writing group – where we did both some critical analysis and some actual writing! That said, I would truly hate you to think that I belong to a writing group that only does writing in our meetings in the same way that our reading group does far more than “just” reading (maybe I will share those activities on another occasion)! I will add that a homemade Yorkshire curd tart was produced which is no mean feat – a real “showstopper challenge” which had undergone plenty of trial runs. We were told that there was lots of “straining” involved….(no comment!). All I will say is that there was no soggy bottom and it was beyond delicious. For those of you who have never had the curd tart experience – it’s a northern thing and needs to be served with a strong cup of Yorkshire tea!

As if this wasn’t enough excitement for one day I also went into the office for a Departmental Meeting (positively multi-tasking for me these days – 2 activities in one day!). It was great to be out in the real world even if it did seem like a parallel universe where things have been moving at a different pace (or maybe direction) to me…My brain has obviously continued to function on some level as I even understood what was being discussed, or convinced myself that I had!

New buildings have sprung up on the Radcliffe Observatory Quarter which now looks far more like a “Quarter” (complete with walkways) than when I was last at work when our building largely sat on its own. Lovely to see all my colleagues, catch-up and enjoy several glasses of “fizz” with them.  Wish I could get back to work and be with them every day. All you folk who wish you didn’t have to go to work every day, be careful what you wish for…

I now start lurching towards the next round of nastiness. Monday morning brings a return to matters medical when it is a 9 am start at the Eye Hospital for the optician to assess my vision/cataracts. The consultant did wonder the other day whether they may be a side-effect of the chemo…which (jumping the gun) may mean that so long as I am having the chemo I may not be able to see very well…oh joy! Quick appointments is not usually how the Eye Hospital works so being seen so quickly also strikes me as  ominous rather than efficient!

Monday also sees me re-starting the anti-sickness steroids which toss my blood sugars into the wind. Then I go to have blood tests done pre-chemo on Tuesday and who knows, maybe the added bonus of a flu jab…

and you thought you weren’t looking forward to Monday morning!

What next?

Thank you to the wonderful Dr Levett in the oncology department who not only discussed my on-going treatment with me yesterday but also contacted the Eye Hospital for me, so that an appointment appeared from the Kafkaesque maze, as if by magic!

Today I went for the eye appointment. Good news is that it is not a problem with my macula. Bad news is that my vision is reduced to top 2 lines of sight chart (both eyes) . I had eyelashes embedded in the white of my left eye which had to be removed by forceps…yes, really….(not baby delivery size I hasten to add) although I did manage to focus for long enough to see what sized instrument was being prepared! These “foreign bodies” were obviously not helping with my blurred vision and did explain the watery eye. BUT, this was not all that was discovered. On top of this it seems that I have developed (with some speed) cataracts in both eyes.  I suspect that oncology will not entertain any notion of eye surgery whilst I am chemo-bound so this may be yet another problem I have to live and deal with.

I am feeling seriously grumpy!  So much of my life seems to be disappearing…and if I can’t read I really just don’t want to know…

Isn’t cancer, type 1 diabetes and  spondylolisthesis enough for anyone? For the first time in all this I am starting to think “Why me?” I have obviously seriously rattled someone’s cage…

Blurred Lines…

Another joy of being a Type 1 diabetic is the related problems that crop up – however good your control. My left eye is my Achilles heel…in which I have diabetic maculopathy. This needs checking regularly but has been kept “well” over the past decade by managing my diabetes and blood pressure. However, (to continue with the classical imagery!) it has always felt like stumbling along with the Sword of Damocles hanging over me…..

The macula is (in layman’s terms) the centre of vision and the problem I have causes small exudates (micro-aneurysms, if I have my terminology correct) to form in this area, which to date, have not leaked. But they could at any time which then causes major problems and could lead me to lose my sight. Laser surgery is possible for this condition but (sod’s law – to continue yet again with the classical theme..!) the area I have the problem is very close to my centre of vision and it has been regularly deemed too risky to do surgery.

I am now having very noticeable trouble seeing out of this eye. What this is related to, who knows? I seem to be losing all the eyelashes from this eye which now weeps and causes blurred vision for the first few hours of each day…I hope this is the problem but meantime I continue to try and contact the Eye Hospital (the most difficult job known to man!) for a sooner appointment!

Oh! The joys of multi-illness-ing (I am sure that must be a regular medical term but if not it should be!)

Trolley Dolleys

I’ve been to the shops. This may not sound like a big deal but I haven’t actually been to the shops (aside from on outings) since May when I made my last public appearance in the Oxford M&S Food Hall. I have been expecting to hear bad trading figures since I fell off their till figures but remedied (or stalled) that today.

Can’t believe how exciting it was to drive to lovely food shops. Not only that but I was fortunate enough to be accompanied by a friend (of long-standing) who knows (and shares) my shopping predilections only too well. To make the occasion truly special she brought along her long-discussed new shopping trolley for its maiden voyage.  The outing was only enhanced when she was told that she had the Rolls Royce of shopping trolleys and that other friends may now need to upgrade…You may think my world has shrunk beyond comprehension but these were always things that I have held dear!

We had a really jolly time reminiscing about the early days of our friendship when we shared the same excitement at entering our first truly mega-supermarket. This was Nine Elms Sainsburys in, we think, 1982!

M&S has really tickled my chemo-damaged taste buds, particularly their fantastic fruit and veg. I certainly made up for lost time and seriously indulged. As a result, it is fresh tuna, “Drowned Tomatoes” (courtesy of Florence Wright from her book “One” see below)  and salad for tea tonight.

It was then a quick (this is now very much a relative term!) to “Cook” which I also love, to check out what has been happening in my absence. I now feel less de-skilled and more up to date!

I may be exhausted but will rest easy in my bed tonight as the fridge (and freezers) are full and I have been re-invigorated by a reminder of many more culinary temptations.

DROWNED TOMATOES

Before summer finally disappears here’s a brilliant way to make use of the last of the season’s tomatoes from chef Florence Knight’s lovely first book ‘One’.

Serves four to six

DROWNED TOMATOES

Before summer finally disappears here’s a brilliant way to make use of the last of the season’s tomatoes from chef Florence Knight’s lovely first book ‘One’.

Serves four to six
550g mixed heritage tomatoes
4 garlic cloves
1 bunch of thyme
2 or 3 bay leaves
1 tsp sugar
a pinch of salt
about 250ml extra virgin olive oil

These tomatoes are swimming, or even drowned, in olive oil, which accentuates their sweetness and depth. Especially pleasing through crisp salad leaves, toppled over a soft poached egg on toast or even steamed with clams. You can use any variety of tomato to make this recipe, from golden cherry to sweet baby plum, but I find that heritage work particularly well.
Preheat the oven to 170ºC/gas 5.
Run the tomatoes under cold water and pick out any stalks.
Place the garlic cloves in warm water for a couple of minutes – this helps to loosen the skin. Pop them out of their skins.
Slice the tomatoes in half and gently lodge them cut-side down in a pan or casserole dish that can go in the oven. Thinly slice the garlic and scatter it over the tomatoes. Drop over the thyme and bay leaves, and sprinkle with the sugar and salt. Pour over the olive oil until the tomatoes are sitting in about half a centimetre of it.
Bake for about forty-five minutes until the tomatoes are soft, a little wrinkly and blistered and have absorbed most of the olive oil.
These will keep for a few days in a jar or airtight container stored in a cool place or, if cooled first and kept under a layer of olive oil, up to a week in the fridge.
What to drink: It’s hard to recommend a match without knowing what way you’re going to use these but you should be pretty safe drinking Italian – Chianti if you fancy a red or almost any kind of dry Italian white like a Verdicchio or Vermentino.

 

Praise the Lord!

A very odd thing happened to me this morning….

Our lovely Brazilian cleaners were here and just before they left I was passed a mobile phone and asked to speak with their friend who spoke better English than they do. The voice at the end of the phone told me that her friends (our Brazilian cleaners) were very upset about my illness and wondered if we could all join in group prayer….

“Group prayer”!!! Those that know me well will know that prayer of any sort is not my bag and will be amazed that I was momentarily stuck for words…but what to say in this curious moment?

There was a long pause until I came up with how touched I was that they were so concerned (which I truly am) but that I was not a prayer sort of person….There was a long pause the other end whilst this information distilled, then I was told that the Lord would walk with me…

The cleaners and I hugged and thus endeth that episode…

Just when you are looking in one direction

I was foolishly so wrapped up in the cancer experience that I took my eye off the Type 1 diabetes for a moment which is always a disaster.

Having lived with Type 1 for 28 years I do know what I’m doing and have managed the difficulties of pregnancy, menopause, surgery  and the steroid boosts from the chemo like an old hand. What I am forgetting is that I can’t eat as much as usual and when I went out for lunch yesterday, I took too much insulin for what I could manage to eat. My blood sugar dropped to the floor and took me and my friends by surprise…Sorry guys! I was driven home and apparently recognised that the problem lay with my blood sugar but was so dopey by then that I went to sleep instead of taking my glucose tablets so arrived home a lovely clammy, burbling wreck. After half a carton of fruit juice I was fine apart from the headache that still continues.

And oh yes the spondylolisthesis has kicked off too.Maybe I should be “pleased” that it is a respite from the cancer worries…?

Isn’t life strange?

This morning has been rather a shock, I looked in the mirror and found I bore an uncanny resemblance to Bernard Manning! It was something about the bits of hair I have left flattened over the bald patches that caused the double take….As I neither want to look like, nor even think about Bernard Manning, I found some headwear. The Jewish refugee look wins hands down!

I also now have some additional headgear. For the first time since the days of school swimming caps, I have a swimming cap . The last time I remember wearing one was in the days when it was considered healthy for youngsters to endure whatever ritual humiliation and cold showers could possibly be timetabled. I had the added bonus of trying to stuff long hair into too small a piece of red smelly eroding rubber that took some persuading to go onto my head and dug into my brow so much that I am sure it can be blamed for today’s “frown lines”. (It also bore my name in black marker pen fully enhancing the victim feeling). Today’s  model is completely different – it is black with a glitzy bling feel and nestles very comfortably on my semi-hairless scalp!

So yes…this means that swimming is now on the horizon. The PICC line (the line that had been put in my arm for the chemotherapy) has been removed. The next chemo will be given via a cannula.  So… in the next few days I hope to re-acquaint myself with water based exercise. Watch out world!

Not quite finished with Tom Jones yet

Inline images 1Inline images 1

The pictures are courtesy of my friend Ann Edwards although she did say that instead of using them to illustrate my blog, I should just put a webcam on my head. But I’m not going to do that! Too scary!
http://www.annedwardsart.co.uk/

I am now going to put Tom Jones aside and get back to my regular life. An exciting day today as I left the house for the first time in a week and actually had a walk out in the bright and warm autumn sunshine. I felt rather pleased with myself even if I did have to lie-down afterwards…Small steps and all that…Maybe tomorrow I will be up before elevenses!

For those of you who were unfamiliar with the Jewish penicillin reference – all I can say is that you need to get out more and find yourself some Jewish friends. Chicken soup is the cure for everything. Perhaps that is too sweeping a statement, even for me, but if not the “cure” at least you temporarily forget about the problem!  Unfortunately, I don’t “count” as your Jewish friend at the moment as I am temporarily (I hope) unable to perform the required soup alchemy.