Health seems to be improving….still antibiotic-ing, but… can now breathe, move and more importantly get to nearby pub for lunch and a glass of wine so all’s well with the world today. I am sure that the small print with the antibiotics specified wine as the perfect accompaniment to the course of treatment but there again my vision isn’t what it once was! I am now cossetted at home with the outside light fading (at only 4:30), heating cranking up and cats curled up in their regular cat-nap positions. It seems an island of calm amid our neighbourhood bereavement and past days of ill health.
Tonight I will attend a “catering corps” meeting to prepare for Tim’s funeral on Monday but for now I am drawing strength and joy from the brief pause of being home bound and feeling more “normal” on this late autumn afternoon knowing what a lifeline my support network of friends/family/followers brings to me and helps me keep going.
Yesterday I woke up and looked at the palms of my hands (as you do…don’t you?) and couldn’t believe how poorly they looked. Alabaster, inanimate and unfamiliar – with lines and crevices clambering all over their surface. But what do you know after a day of panic, medical advice and this mercurial disease I have, I feel a whole lot better today?
Turns out that the skin infection and/or antibiotics are not happy bedfellows with Type 1 diabetes and it was actually the stratospheric rise in blood sugar (as a result of either or both these additions to my week) making me feel so washed out/run-down/broken. I now just have to watch my blood sugar with an even closer gimlet eye than usual and keep it balanced.
Miraculously (and with the aid of plenty of lotions and potions) my hands now look relatively normal – everything is relative in Wendy’s world!
I must be feeling better though as I have already switched energy suppliers today, not having realised that even paying the exit fee of £50 of our current deal (valid until May 2014) still made other packages way more attractive. Hope this means I am back in the “useful” world again!
I took my first visit to the Oxford out of hours GP practice today. I was pretending (despite weeping pus) that my skin rash had cleared up when it very obviously hadn’t. What a great service this is and even better that it was staffed by GPs I knew. I now have 2 courses of antibiotics which I hope will do the trick. However, antibiotics have their side effects on me, too. Aside from the shortness of breath which I encountered in the last round of chemo, and for this round, bizarrely, keeps making me feel that Ann Widdecombe is leaning onto my chest/lungs. (If you don’t know who she is, you will find her on Google!) She is not a very welcome bed companion! Anyway…as if this wasn’t enough for today, the antibiotics are also doing their devlish “best” on the other symptoms front.
And so…another day has been spent in bed with regular tablet breaks. I am hoping tomorrow will be a better day but have learned by now, not to count on anything. Surely every round can’t be hope for the best, expect the worst!
My body has finally got out of bed today despite the fact that I have most definitely ticked every box on the symptom tick list this week except “go directly to hospital” (my first cycle of the full quota which would have been preferable to avoid but who really though that was on the likely spectrum?)…There may be those too squeamish for me to fully detail these delightful manifestations so I will spare you! Let’s just say I am much paler, very dehydrated and there has been a lot of clearing up!
In the thick of our neighbourhood bereavement and we are all holding Jenny and our other loved ones close and closer still. I had a lovely message about finding the words for these things and that our modern language does not capture the emotion. That the ancient world’s ‘Furies’ and ‘Sword of Damocles’ are more appropriate for capturing the raw horror that ordinary life can suddenly become.
Meantime I flop and ooze my body weight in the most undesirable of ways and don’t feel much strength to anybody. However I know that my coping mechanisms will revive before too long so “bear with”….
Aside from my post chemo clamminess, exhaustion and general unwellness – we have all been hit by the huge shock of the sudden death of one of our best-est friends, novelist, raconteur and party animal, Tim, who had a suspected heart attack whilst out on his bike on Tuesday. This rather more than overtakes what he would jokingly call “my moanings” for the time being. That he will be much missed doesn’t even come close…Today I don’t have the words…
4 hours at the hospital today receiving my 3 weekly poison…now waiting for it to cast its evil spell around me and drag me into its downward spiral…It appears that despite my inability to breathe properly, see properly and sport the remainders of a skin infection I was fit enough! I hope to get through today relatively well and not, I hope, go downhill before Great British Bake Off Final tonight…I’m on Team Kimberley!
I keep forgetting to report that hits on my blog are ever increasing – now well over 10,500 hits – thank you all for sharing and following!
I met somebody at the hospital who was on his 20th round of chemo…Can this be possible? I am struggling with the thought of another 2 (to make a total of 6, well 7 given my first, then lapsed treatment). I was struggling with the thought of even going back for round 4 (or 5 depending on how I count!) – just goes to show that there are sturdier souls than me out there
I have morphed into a waiting room. I feel like I am flailing about in an unfurling corridor crammed with a progression of interlinked waiting rooms. The actual waiting rooms – hospital/GP where I can easily recognise what I am waiting for. Then there is everywhere else, wherever I am…..Waiting…waiting for chemo…waiting for chemo to be over…waiting to get over each round…waiting for any positive words from the doctors…waiting for scans…results…what next? So…here I am waiting in the waiting room (on this occasion) to see if round 4 on Tuesday is better than the last…Never a dull moment!
That said I am nearly up to date with household duties…Fridge is full, freezers are at capacity (including my newly delivered home made batch of chicken soup!), washing is done, huge pile of ironing is done, 2014 diary is on order and, most importantly, I think I am now finally sleeping less than the cats!
Eyes are functioning so I will return to peruse a gift I was recently sent “Cheerful thoughts for the robust, the ragged and the recuperating”! That’s me!
Last few “good” days now until steroids start on Monday and next dose of poison on Tuesday. There seem to be few things to count on whilst on this journey. I had been buoyed through the really bad days by the thought of the following week/s being better. That hasn’t really happened this time. I have had a sore throat for the duration (not helped by being sick), the skin infection is healing up but not quite there yet and I am still taking antibiotics which aren’t exactly a Cloud 9 medication. I would also like new washers fitted to my eyes and nose as they drip, leak, spurt constantly. What a horrid way to find out what eyelashes and nasal hair are there for….Still…another learning opportunity!
There was a suggestion yesterday that I try false eyelashes…they might work…? I can already imagine the scene of trying to put them in place – running eyes, no glasses, poor vision, eyelash fixative and my clumsiness combined sounds like a fashion victim waiting to happen….Perhaps not! …and that’s before I have even been to choose them. Never having bought false eyelashes I wouldn’t even know how to buy – do you have to choose length, colour, thickness, curl and brand, which brand do you go for? Where do you get them from?…And…if I ever got them on, how do you get them off? It all sounds far too difficult for me!
I suppose that after the scare earlier in the week I have discovered other things that I haven’t succumbed to, but then I hadn’t even considered the option of a clot on my lung. Perhaps I can amuse myself by thinking of the life-threatening conditions that I don’t have. Hard to escape the day-to-day reality of the one I do have though.
Cancer – check, aggressive cancer – check, incurable cancer – check, no hair – check …OK, I know the latter isn’t life-threatening but even 3 months on, feels (for me) as bad as the other components so I am including it.
BUT…I have new glasses and can see reasonably well so I can read and write.
Don’t say it’s not possible, it is! Exhaustion absolutely dripping from my pores after a very long and anxious day at the hospital. Went for my appointment this morning and after reporting all the symptoms I have been experiencing since last time, alarm bells seemed to be going off rather loudly! It seems that my itchy rash is infected and there was some worry, after my extreme breathlessness (following the last chemo) that I may have a clot on my lungs….This was after discussing the many eye issues and finding that they really have to stay “on hold” until chemo is over.
After lots of moving around a variety of hospital waiting rooms, I had a chest scan at about 4pm and then had to return to oncology to wait for and discuss the results. The good news is that there is no clot and that the chemo is working very well. The bad news is that then I could either opt for (in non-medical speak!):
(i) a lower dose of chemo from round 4 – so less stuff that is working but may make life more bearable. (ii) Have the reduced dose but add in the missing volume to another couple of rounds. A definite no! (iii) Or stick with the programme and see if the symptoms stay the same next time or if I can tolerate them.
I opted for the third – let’s continue to try to diminish it the quickest/most effective way we can!
11:00 – 5:00 is too long a day in the hospital for me! So now I am going to go and lie down to see if I can energise for the undoubtedly nail biting England v Poland football this evening. Will “we” win and qualify at this earliest stage…Hope so!
It is a full on foodie weekend here in Oxford. On Friday, despite my first outing, for a few months, on my bike I felt pale and just plain exhausted. However after a football win for England and a half-time treat of home-made (didn’t want to over-exert myself!) gin and tonic granita, I have upped my game…I am not going to be defined by illness this weekend, the dream of full-health WILL poke its head round the corner!
Birthday 1 yesterday (Stuart, my husband) and we have had visitors – bringing a trail of lovely hugs and gifts including North London bagels…We sat over a fantastic Italian lunch for some hours enjoying just being together accompanied by many Sardinian specialities…no sardines though…although I wonder, as I write this if sardines are Sardinian in origin…Mulling this one over will be something else to keep my brain active
Home again and there was a tutti-frutti bouquet awaiting me along with other postal treats! There are so many special people from the whole course of my life converging and helping me keep going at the moment, I find it hard to express how amazing it is and how it makes me feel…, like I am holding everyone’s hearts in my pocket….It makes me tearful..yet happy tears..
Today is Patrick’s 21st birthday. Hardly seems possible but it’s true! We will be going out shortly for Sunday lunch with all 4 grandparents, 3 of Patrick’s close friends and the Greek branch of our family to celebrate the big event! In the same way that I suggested previously that everyone needs a Jewish friend, everyone should also have a Greek branch to their family tree…
Now I am beginning to feel more like myself (if only I had hair!), the next clinic appointment looms (on Tuesday). For the first time we have compiled a list of symptomy-things to raise. Hard to believe that they get forgotten if not written down but it is more that new symptoms just upstage the last which then get forgotten…or at least that is the logic I am applying.