Update on Me: Good News

Do you want the good news, the bad news or the really good news first? 

The really good news is that I had a PET scan on 8th April and except for a couple of non-reactive spots on my liver, the lymphoma was GONE!  I’ve had two rounds of chemotherapy since then, so those spots should be gone by now.  I even got to ring the bell to proclaim that I’d had my final round.

The t-shirt reads “Science is magic that works”.  True.  I’m living proof.  

Oh, and I get my PICC line out tomorrow - that’s the thing in my right arm.  I have my first follow-up appointment on 2nd July.  I guess this means that I’m officially in remission.

The bad news is that I really have lost all my hair!  

You can even see the scar on my scalp, where I was hit by a Number Board, which fell off the wall and landed on me in Grade 1.  It’s on the right of the back of my head.  I remember that it bled everywhere and that the GP glued my scalp together.  I so was disappointed not to get stitches. What 6 year old wouldn’t be?

The good news is that I’ve lost my excess weight and am down a dress size.  No, that wasn’t planned and I’m not really sure I should celebrate it, since most of it was due to the tumour occupying all the space my abdomen and making me feel full really quickly.  It was either the tumour or the ascites it induced.  (That’s fluid in the abdominal cavity.). Anyway, over the course of November, December and January, I lost two stone (28lb, 12.7kg). While I put on a couple of pounds once I left hospital, I now weigh 8st 12lb (124lb, 56.2kg) and have maintained that weight since February, without doing anything.  No dieting; no watching what I eat; nada; zilch.

What this weight loss means is that I’m back wearing clothes that I haven’t fitted into since the 2010’s, and that is something to celebrate.  This time last year, I couldn’t fit into the Science t-shirt above.  Now I can and I’m so glad I wore it when I rang the bell.

- Pip

Update on me

I have Non-Hodgkin’s Lymphoma.

It started with a bleeding stomach ulcer, in May. I had a gastroscopy at the end of June and a CT Scan in August, which were followed up with a second gastroscopy, an MRI and another CT Scan in December.  The ulcer was situated on a small lump in my stomach.  Until the start of November, I felt well and healthy; after that I started getting sicker and sicker. I was diagnosed at the end of December, based on biopsy results from the second gastroscopy.  On 17th January, I was so ill that I was admitted to hospital for almost 3 weeks.  Poor DH was by my side for the whole thing.  He was worried sick and only left my hospital room to go home to sleep.  (After I was discharged on 5th February, he was so knackered that he slept for about 20 hours.)

I’m still shocked at how sick I was.  I realise now that I was close to death.

As well as being a lump in my stomach, the lymphoma was in my liver, kidneys, right shoulder, chest and pancreas. I had no energy, no muscle tone (I’d struggled to climb the stairs at home), no concentration, and was swollen with fluid in my legs, abdomen and lungs.  At one point in the hospital, I was carrying 20kg (44lb!) of excess water.  The hospital even put me on oxygen. I wasn’t hungry and struggled to eat.  Over 3 months, I lost over a stone and a half in weight. (That’s 21lb or  9.5kg.)

I had my first round of chemo in the hospital and immediately started feeling better.  The miracle happened two weekends later, when I woke up on the Saturday and suddenly felt “normal”.  I had energy and an appetite, and could knit and read, neither of which I’d been able to do for weeks.  Ironically, the night before, I’d been so deeply asleep that the nurse struggled to wake me for my obs and nearly called a code. (I was dreaming and he’d been incorporated into my dream.  It was only when DH’s voice cut through the dream that I woke up.)  I was discharged the following Monday.

My treatment is 6 rounds of chemotherapy, consisting of 4 separate drugs, on a 3 week cycle.  I had my third round last week and, beyond chemo screwing up my tastebuds - again - I’m feeling good.  Seriously, my biggest frustration is that I can’t taste coffee.  My taste for it does come back towards the end of week 3 in the chemo cycle, so it’s not permanent but meanwhile I have to drink tea.

Of course, it’s not just coffee that I can’t taste at this point.  The lack of taste applies to most proteins, making meals tasteless or just taste of one ingredient, e.g. vinegar in Hot & Sour Soup (which should taste of chicken and didn’t).  It’s totally off-putting.  I can, however, taste Vegemite.  Yesterday’s snack:

Other side effects that I’ve experienced are peeling skin and, of course, beyond a few determined strands, I have lost most of my hair.

Still have my eyebrows and eyelashes though. (NB:  I had the length cut off, a few days after my diagnosis, and donated it to the Little Princess Trust, who make wigs for little girls undergoing chemo.  Might as well make something good from my situation.)

I’ve been home for 5 weeks now and spend my days watching television, knitting, listening to podcasts and reading. We go for a walk every afternoon and I cook dinner most days.  I go to the hospital every Monday, either for blood tests and a dressing change to my PICC line or those plus chemotherapy.  A chemo day is at least 5 hours long, so I have to make sure I have enough to read.  I’m working my way through Dorothy L Sayer’s Lord Peter Wimsey novels in publication order - although initially I reread Gaudy Night - and am currently on book 6, Five Red Herrings.  

Work-wise, I’ve been signed off sick for 6 months by the hospital, so will return to work at the end of July.  I’m still burning up my sick leave at the moment and won’t be on Statutory Sick Pay until April.  It’s £116.25 per week, which isn’t much - less than the UK half minimum wage.  Fortunately, we have plenty of savings so can easily cover my share of the bills.

- Pam

It was such an unusual cold

I spent most of this week in our Glastonbury office.  This was my first visit since the first week of December 2019, back in pre-Pandemic times.  Ironically, it had many echos of the first:  on both occasions, i met up with the same colleagues, but, this time, I was travelling alone, whereas on the previous trip, I’d brought “The Stray Australian” with me, a colleague from Sydney.  We stayed in the same hotel, as did the Regional Finance Business Partner, who I had dinner with on both Tuesday evenings.  Last time,  on the Wednesday afternoon, I developed a tickle in my throat so wandered over to the nearest supermarket after dinner, to buy some whisky to kill the cough.  This time, ditto.  Last time, I drove back to London on the Thursday afternoon, feeling more and more ill, dropped the Stray Australian back at the office, then went home to bed.  This time, I drove home on Friday, my tonsils making their presence felt..

Last time, by the Saturday, I had a sore throat.  It didn’t help that that was the day of my choir’s carol concert but I soldiered through, my voice cracking on some of the high notes.  I also soldiered through at work. I had a lot to learn from the Stray Australian before he went home on the Thursday, so couldn’t stay home.  Then while I was feeling like death warmed up on the Monday, I got asked to take on a role in our Huntingdon office: someone had resigned, timing it with holidays to give less than 2 weeks’ notice.  (Seriously, I was sitting in the office contemplating asking to go home to bed, when I got called into a meeting room.) 

Symptoms appeared in stages.   I developed a drippy, runny nose; watery, like a dripping tap.  The scratchy, swollen throat went on and on.  My larynx was on fire for days.   A week later, I could have drawn the cartilages within it, it was that sore.  Christmas came and went, and we spent the week of New Year in Normandy.  I was cooking dinner on the Tuesday (New Year’s Eve) when I realised that everything was tasteless.  On the Thursday, I woke up in the middle of the night, feeling crackles in my chest.  A couple of slow, deep breaths and they went, not to return. That was the last symptom, to appear.   It took a couple of weeks for my sense of taste to return - now I have to salt everything, (where I never did before) - and it took months for my vocal cords to recover.  

 I am 100% certain, now that it was Covid.  We know now that the first official variant ulcerated the vocal cords of those who were intubated, hence the damage to my own vocal cords, and all the other symptoms tally.  I know who I caught it from: a colleague in a meeting on the Friday before I went to Glastonbury.   It swept through her office and through ours, before Christmas 2019.  When Covid began getting publicity, we sat there ticking off the symptoms.   Of course, there was no testing then, so it can’t be proved now..  (By the time I did have antibody testing, I’d been vaccinated twice, and tested positive once, via a PCR test in October 2020.)

This time around, well, yesterday’s lateral flow test was negative for Covid.  The tickly cough has declined a lot and my nose is snotty, not dripping water.  I think we’re safe to say that it isn’t Covid this time, but I doubt I’ll be at rehearsal tomorrow evening.  I’ll take another test on Tuesday, before I go to the office.

 My name is Pam and I had Covid before it was famous.

The aftermath

The best thing to happen to me in the last week, is that I went to Fracture Clinic on Wednesday and they gave me a boot!

I can now stand and walk without crutches!  I am mobile again.  Yay!  Can't drive until after my next Fracture Clinic appointment on 20th July, though.

The worst thing that happened?  Well, unless you've been living under a media blackout, you can probably guess what it is: Britain voted to leave the EU.  

Brexit.  What an absolute economic disaster. My fellow residents of the U.K. voted for a recession.  They voted for the Pound to tank against other currencies.  They voted for the price of petrol to increase.  They voted for inward investment to cease.  They voted for jobs and manufacturing to transfer to other parts of Europe.  They voted for food prices to double.  

Woah there!  I can hear my Australian and American friends going "Hang on.... Food prices to double?"  It doesn't sound comprehensible, does it?  The fact of the matter is that Britain has not been self-sufficient in food since before the First World War.  And I'm not talking grain.  Prior to WW2, Britain imported 60% of its fresh produce.  It still does. The vast majority of what goes on most people's tables comes from other parts of the EU.  Another slab comes from as far afield as Kenya (strawberries) or Egypt (potatoes).  Go food shopping in a supermarket in France or Spain or the Netherlands and you'll be hard pressed to find any produce that wasn't grown "in country" - the reverse is true here. 

Well, say the Brexitiers, at least we won't be wasting money on the Common Agricultural Policy, subsidising farmers to produce butter mountains.  It's an expensive waste of money, isn't it? Throughout the years I have lived in the UK, I have heard stories/complaints about the Common Agricultural policy:  the butter mountains; the inefficiencies (keeping small farms alive instead of allowing them to go to the wall and be absorbed into agribusiness conglomerations); the abuses (Italy claiming to have more land producing tomatoes than its entire landmass); paying farmers to leave land fallow (so that biodiversity is preserved), etc...  

I have always thought that they missed the point: the reason the Common Agricultural Policy exists in the first place is food security.  It was devised when the memories of the famines and food shortages that followed WW2 were fresh in people's minds.  People remembered starving. They starved before and during the War too.  Germany remembered the great inflation of the 1920's, when the price of bread could double within an hour.  France, Belgium and the Netherlands remembered starving during the War too, when the occupying Nazis employed the policy of feeding their war machine first, Der Vaterland second and the plebs third.  With starvation fresh in your memory, wouldn't you subsidise farming to ensure food security?

I fully expect food prices to double in the next two years. Mark my words.  It won't just be due to the Pound falling in value against the Euro, either.   Britain is dependent on Europe for most of its foodstuffs.  Right now, the other nations in the EU sell food to us on the same basis as they sell it internally - no tariffs; no additional taxes.  Now, they will have a choice:  sell internally to the other 26 countries, or put a tariff on and sell to the UK, who desperately want your food and are ripe to be milked...

Britain needs the EU far more than the EU needs Britain. 

- Pam

I broke it.

I am a stubborn sod. Ten days ago, I slipped in the ground floor lift foyer at work, twisting my right ankle and wrenched my foot. I can’t walk on it. I spent a large portion of that evening sitting with my foot elevated, sporting a bag of peas while stubbornly thinking “It will be better in the morning”. It wasn’t so I went to A&E in morning. It turns out that I have a footballer’s injury – I have an avulsion fracture of the fifth tarsal (basically my foot muscles pulled a chip off the ankle end of the long bone on the outside of the foot).

The thing is: I knew that I'd broken something within about a minute but I didn't want to admit it. The Thursday  was meant to be a day working in London followed by the T20 cricket at the Oval, and I didn't want to miss that. I was on my way out to dinner with a really good friend who I don't see often enough and didn't want to waste a precious evening in the Royal Berks. (Also, where would I park?). I kept telling myself that it'd wear off; it was only when I put weight on it that it hurt. It didn't hurt to drive; it didn't hurt when I was sitting; surely it would wear off? 

Only it didn't. I knew I wouldn't get to the cricket before I left Reading. Walking from my parked car to the house nearly had me in tears - the deciding vote for A&E. I left it until the morning only because I have worked in A&E and know that mornings are quiet, so you get seen relatively quickly.

While it doesn't hurt much unless I lose my balance and stand on it, the past ten days have been exercises in frustration.  I have crutches but am about as manoeuvrable as a lump of coal with them.   I can’t use them and carry anything.  This turns everything into a production number, when I’m home alone.  Every step has to be thought out.  For example, to make a cup of coffee I have to hop with my crutches to the kitchen cupboard to get a coffee cup, propping one crutch up nearby to free up one hand;  stretch to put it down on the kitchen table; hop with crutches to the other side of the table, where I can reach the kettle without stretching and the coffee;  reach over to get the cup so that I can pour in the water, etc;  push it back to the other side of the kitchen table then hop back round to reach the fridge to get the milk, etc.  All the while, trying to balance on one foot and one crutch because I’ve had to put the other down so that I can hold whatever-it-is while in transit before I can put it on the table.

I'm lucky that a) I have a  portable office (laptop) and can work from home, and b) that I managed to break my foot just at the start of the Euro2016 football championships.  Both have helped me stay sane!  I would die of boredom if my days were just me and the television, waiting for Gerald to get home.  Beyond "Homes Under the Hammer", there is nothing worth watching on daytime TV.  (I have a few things stashed on the DVR but not enough to last me.)  

My ears shut off when i concentrate, so there's no point having anything on in the background while I'm working but when I'm not and there's no football, I'm mainly listening to podcasts from the BBC:  Moneybox; Kermode and Mayo's Film Review; Costing the Earth; Ramblings; Open Book; WS More or Less (who are doing a fascinating series on how statistics are used and abused during the Euro Referendum).  The knitting podcasts I'm listening to include:  Knitmore Girls; Knit British; Caithness Craft Collective; iMake (back-episodes only since she's stopped recording); Shineybees; Stash and Burn; CogKnitive.

I have a fracture clinic appointment on Wednesday.  Hopefully, they will give me some idea how much longer this will go on. 

I'm with lurgy

I don't think I've had more than a minor cold since 2008 but, this year, one has really hit me.  This one started with the sneezes last Thursday and appears to be progressing one symptom at a time.  (I really hate it when that happens.)  Naturally, it started when I was already on leave - I'm sure there are statistics about that somewhere, people getting sick when they finally have time to relax.  However, I know that since it's a cold, I would have become infected in the first or second week of December.  That's when the lurgy was going around the office.

I phoned in sick on Tuesday, with my tonsils pretending to be golf-balls.  By yesterday night, they were down so I thought "Yes, I can cope with work.  I'll go into work tomorrow". Set the alarm for 6am this morning. It went off, I got up had my shower, etc, sat down with my breakfast coffee and realised that I felt more tired than I did when I went to bed last night. Breathing was harder, too.  So I phoned the office and told my team that I won't be in for the rest of the week.

I do hope this damn thing isn't escalating.

- Pam


PS:  Yes, I've had my flu jab.  I've been having flu jabs religiously annually since I developed a secondary chest infection after having the flu in 2000.  My GP recommended it, which means I get it for free on the NHS.   I'd have paid for it, prior to that, but it was almost impossible to find somewhere to obtain it.  (One year, my employer organised flu jabs for everyone who wanted one.  We paid £5 each towards them.)  Now, of course, you can buy a flu jab in Boots.

Don't Panic Mr Mannering!

Are you as underwhelmed about Swine Flu as I am? Looking back over the last four weeks, it seems like the proverbial storm in a teacup. It seems to have morphed into a damp squib.

I have a theory about why Swine Flu isn't as virulent outside Mexico as it appears to be within it. It's quite simple and doesn't involve higher level genetics or virology. My theory boils down to this: Mexico is a poor country without a nationalised health service. To see a doctor or be treated in the ER, you have to pay. Therefore, I reckon that only the sickest of those infected sought out treatment in Mexico, the ones who were already at Death's door. Following on from that logic, it means that for the 100-odd deaths in Mexico, hundreds of thousands of people were infected with Swine Flu and have recovered from it. They weren't so ill that they would spend their hard earned dollars on a doctor's visit.

It isn't SARS. It isn't Bird Flu. It isn't that virulent. Journalists of the world should get over it. The rest of us should just employ good hygene, avoid touching our faces and washing our hands often.

- Pam

Knitting Hiatus

Remember at Christmas, how I said I'd knitted until my wrists ached in order to finish Peter's present? Well, it's come back to bite me. I have RSI.

Naturally, I was sitting here two weeks ago reading about Tama's tennis elbow, thinking I'd been lucky, when this flared up. The day before, I'd manually rolled my first ever centre-pull ball:


It ached a bit afterwards but I cast on the next pair of socks anyway and started knitting, waiting for the point where I'd have to haul a big knot of yarn out of the centre of the ball (so far, I've had one tiny tangle, but nothing more). Saturday morning, I was still waiting and still knitting, when my right forearm began to ache. I rested it for the remainder of the weekend, but using the mouse all week at work aggravated it a lot. I could only knit a row or two in the evenings and my right little finger kept going numb. So I gave up knitting, which almost killed me.

Finally, last Saturday, I got the chance to buy a wrist support. It has made a big difference because it's made me conscious of my movements. I've worked out that the real cause of the problem is being lazy and dropping my wrists when I type or when I use the mouse. Knitting just aggravated it. (I have wrist rests at work, but you shouldn't actually use them to rest your wrists - they're a reminder to lift them up to work.)

I'm not sure how long I'm going to have to wear the support. But I may have found a way around the restriction on my knitting. My knitting-buddy Kate has just taught me how to knit continental style. Because you hold the needles over the top, it doesn't strain the muscles at the back of my wrist (in "English style" knitting, you hold the right needle like you're holding a pen, bending the wrist back). I'm slow, I'm not sure of my tension yet, and I'm still having problems conquering purling, but I am so glad that I'm able to knit again! Thank's Kate.

Kate's off to Wisconsin tomorrow for at least the next 8 months. I'm going to miss her. She's the only knitter I regularly see. Here's me, Kate and Nicky at Kate's leaving lunch on Thursday.


- Pam

Wash your hands

I'd like to apologise now - I haven't been inspired to write much this week. I guess I've been too tired. I haven't even gone through the photos from the trip to select a few to show off. I've even been to lethargic to cook! (I have to say that having some tubs of base and a few containers of chilli and stew in the freezer have been a godsend.)

So I thought I'd share one piece of useful trivia that I picked up from the Canadian news channel: apparently if you wash your hands at least 5 times a day (presumably in addition to toilet stops), you halve your chances of picking up the common cold. The Canadians are worried about an epidemic of a non-typical strain of the common cold, which the news channel dubbed "the uncommon cold". Unfortunately, I never did learn what the symptoms were; I'd obviously walked in at the wrong end of the news item and missed it being repeated.

As an ex-nurse, I thought I'd pass on the correct way to wash your hands. If you've ever wondered, here is a good "how to". The only things I'd add are:-

• Start at your finger-tips and work your way down your hands and onto your wrists/forearms.
• In most respects, it is the friction that kills the bugs (unless you're using a disinfectant soap such as Betadine). It isn't necessary to use a disinfectant soap in normal life, just make sure that you spend enough time washing your hands to do the job. In fact, it is possible to get surgically clean hands after 5 minutes of correct washing, using a basic soap and running water.
• If you use a cake of soap, ensure it is dry. The BBC did a documentary a few years ago, The Secret Life of the Family, where they demonstrated that your hands would have more bugs on them after washing with soft, damp soap, than before doing so! Apparently, soft, damp, mushy soap is a perfect growth medium.
  
• Scrub your nails if you get the chance with a clean, dry nail brush, then wash each finger, move rings up and down to clean beneath them. Move onto the palms, rubbing your knuckles into your palms, followed by the back of your hand.

- Pam

So that was in me

I had my gall bladder out last Monday (1st). I'm only just starting to feel really human about it all. If you are squeamish, you might want to skip this post.

What can I say about getting your gall bladder removed? Well, the first part of the day made me feel a bit like a turkey voting for Christmas: on the one hand, you're really not looking forward to the pain afterwards; on the other hand, the earlier in the day they do it, the longer your recovery time before they kick you out. As it was, I was second on the list. That gave me enough time to roll some leftover sock yarn into a couple of balls, cast on and knit about 5 rows. I also read for about an hour (knitting gave me too much time to think). My book-shaped distraction: London 1945 by Maureen Waller.

I'm the typical ex-nurse: I know too much and ask all the strangest questions. I was asking the anaesthetist about the anaesthetic drugs they use these days when he knocked me out (pancuronium is off the menu, suxamethonium is saved for emergencies). I never did get to ask if he was going to use thiopentone first. [pout!] Oh, and Hamilton's anaesthetic machines appear to have disappeared (we used them at RMH and, 10 years later, they were one of my audit clients - how's that for a coincidence).

I have hazy memories about the immediate post-op period. Yes, I was in Recovery with lots of other patients. Yes, they did 15 minute obs like we used to. Although they use machines more (I had a pulse oxymeter on my toe and probably an electronic BP machine). My throat hurt like hell and I could only grunt when the anaesthetist told me he was giving me more pain killers and some Maxalon for any nausea. A specimen jar was tucked into my right hand with "you might want to hold onto those" and they took me back to the ward. I slept for the next 4 hours.

I woke up to find DH at the foot of my bed. He'd popped in on his way home from work because he hadn't received the call to come and collect me. My first response was to thrust the specimen jar in his direction and whisper "Here you are. You wanted them." (Whenever the topic had come up, DH had wanted to see my gallstones.)



We were both surprised there were so many and that they were so large.

They gave me pain-killers to take home as well as a couple of dressings. The pain-killers were a complete disappointment: Voltarol and paracetamol. Neither of them came close to touching the shoulder pain, which was excruciating (and is the main side effect of keyhole surgery - the CO2 they use to pump up your belly irritates your diaphram = pain). I spent Tuesday and Wednesday in agony. Thursday was better, but not brilliant, and on Friday I didn't need painkillers.

DH took my specimen jar full of gallstones into work and, being a typical engineer, dissected one:-

FWIW, a 5p piece is 18mm in diameter.




DH reports that the outside is hard, whilst the inside is crumbly.

- Pam (I married a science geek)

Pain

I have a long mental list of things to blog about: the trip to Paris last month (PipneyJane Knits on Paris Metro!), the football, my knitting (I'm finally knitting/sewing on the bands of the snowflake sweater), several Prom Concerts, etc. However, it's all gone out the window - today I'm distracted by pain.

I've mentioned before that I'm getting my gall bladder out on 1st October. That won't be a day too soon. The pain is now almost a daily occurance. I've had episodes without a trigger; I've eaten triggers without subsequent pain; there is no logic to it now. Today the trigger was lunch.

So apologies whilst I curl up into a ball and grunt occasionally. Normal blogging activity will be resumed eventually.

- Pam

Winding Doooowwwwnnnnnnn

I'm convinced that I'm on the wrong level of Thyroxin and I'm getting more and more symptoms to prove it. The most compelling is that I'm tired all the time, again. On Friday, I left work at 1pm feeling shattered and ended up having an afternoon nap. Yesterday, I was ready to go to bed when we got home from the Club at 8pm. Today, I'm having trouble keeping my eyes open and it's only 9am as I type this (it'll be later when I post it).

Also I'm hungry but I'm not hungry (if that makes sense). What I mean is that part of my body registers that it's hungry, but my brain is too tired to pay attention. On Saturday evening, I didn't realise how hungry I was until I put some hummus and pita out for DH and guest to nibble on. It wasn't until I started eating that I realised I was hungry.

Then there is the feeling like I'm on "time delay". I see and hear what is going on, but I don't necessarily register it until a few seconds after everyone else. Or things just go straight passed me - my brain wasn't quick enough to catch them. Fortunately, this symptom isn't a permanent feature of my days yet; I'm safe to drive. (I may be a zombie on Wednesday, though, when I go to a meeting in The Netherlands. The 4am start will knock me out.)

I've phoned my GP and asked for a blood test (thyroid function tests). Will pick the paperwork up on Friday afternoon, then head to the hospital to get them done. On Friday, when I can see his diary, I'll book an appointment to see him in when the test results are back - don't hold your breath though, they'll take 3 weeks.

- Pam