240. All is going well…except for me.

 Good news at the hospital. My visible symptoms  (the eye, the skin lesions) are all softening and improving but, best of all, my blood cancer markers are continuing their downward trend.

To be honest. I didn’t think I’d make it to the appointment (OK, it was for 9am and I’m not awake then!). I expected to sit down and burst into tears and reject cycle 4 as unachievable. I expected to plead with him to admit me as an in-patient and give me blood and saline to hydrate me. But he checked my eye and neck and said they were looking good, went through ALL my side effects - there’s no room for embarrassment in chemotherapy - and then pronounced that he was giving me a week off to get back to myself again. Then I will have cycle 4 on a lower dose and a CT scan which is routine every three months from now on apparently.

This is SO me

In addition, he has cancelled my zometa infusions (I was a bit disappointed as I could have done with a bit of saline drip for hydration). Dr U said they’d done their job (clear bone scan) and were no longer necessary. He said the treatment I’d had would last for years, at least till I was a hundred . Nice to hear that when, at the back of my mind, is the unavoidable thought of will I make 71? Obviously yes.

I left the room a new woman. Still a bit wobbly but I could feel my body responding to the idea of a week off - shoulders relaxing, head a little higher. Of course, it didn’t help that the plan was to hand in my prescription at the pharmacy and then text my chauffeur  Emma to come and pick me up. But…I’d left the phone at home. I couldn't believe it, I’d already got in the car and then had to go back for my glasses. But my phone is literally my lifeline right now. And of course I had no idea of Emma’s number. There was no point ringing D - he’s terrified of my phone!

Fortunately I’d explained to Emma that there are Oncology Patient parking slots on the basement level so I decided I could walk there and pray she had found a slot cos a) there are 7 stories b) all I knew was she has a dark blue car and c) it would be a physical impossibility to walk all those floors and stairs. I found her!! Thank you Emma.

By the time I got home and was debriefed (it feels like an interrogation) by Dennis, all I could do was head upstairs and collapse on the bed.

At the moment, this has several connotations - a simple collapse on the bed; a loss of balance collapse on the bed; a fall onto the bed when my head goes hollow. That’s how it feels. It was a simple collapse on the bed. Later I toppled onto the bed and later I fell backwards by the dressing table - something to grab to avoid disaster. A hollow head fall. Today I got out of bed, stood myself upright and immediately fell back. Wednesday I stood up from the loo, balanced myself and then fell against the wall and back onto the loo. More hollow head falls. I don’t know what’s happening, it’s likely to be an “unusual” side effect- we’ll see later this week when my body is clearer of capecitabine - but I’m a mass of bruises and getting very wary of walking anywhere where there is no support.

The summerhouse has arrived but we have no idea when the fencers will come to put it up. Of course it’s been raining so it’s not having a good start.

Ah, but it’s going to be great!

239. And now for the truth..

 

This is how I feel. Trina and I make up words when we can’t describe how we’re feeling, This is distinctly flimby. Flimby says so much - floppy, flimsy, not-quite-there, drained, exhausted. 

Then I have the severest constipation I’ve ever experienced. Ironic that Dr U warned me of the severe diarrhoea I might get and equipped me with the requisite remedies. There are even instructions about when to contact the hospital ( more than 3 bouts in a day or at night time) and poor me, clogged up beyond belief, doesn’t get a look in.

I wary of taking something to move things along for fear it might exacerbate the threatened diarrhoea so I’ve probably spent about 4 hours going back and forth to the loo, moaning, whimpering, chivvying my bruised bowel to behave itself. The realities of cancer…

Being dehydrated doesn’t help. I’m still not drinking enough - hard when you find it difficult to swallow liquids. What I really need is some TLC up in the Bexley Wing. A comfy chair and a saline drip. Maybe some blood. I’d come out a new woman. Right now, I don’t like this woman.. I’ve picked a fight with someone on Facebook (the writers’ group) about calling sick people brave. I think if someone told me I was looking good or called me brave, I’d clock them one.There is no choice. It is what it is. The reverse of brave is cowardly. No-one would dream of using that term but I can promise you, it’s how a lot of us feel on and off. I think I’m just lacking a few blood cells.

Another effect is loss of balance. I’ve had three falls this week (which I have not told Dennis about for fear of increasing his worry). Since I’ve been wall-walking (as Dr U described it) since my first chemo, I’m an old hand at this but I have to be very careful near the top of the stairs, remember to grip the bannister and the door frame opposite and that’s it, all risk removed. However my falls have been in the bedroom, twice flopping backwards and sliding down the same drawer handles, once tripping and toppling on the bed.

I expected 70 to feel a bit different but I didn’t think I would be feeling this old.  End of moan. I kind of hoped I might need another dash to the loo by now but it seems I’m out of luck. I’ll just have to lie and wish. Sadly I need to eat too. Not a great combination lol,

238. Look on the bright side?

 So now I’m 70. I have balloons as evidence.

I also have a tiara as further proof :

     And loads of goodies from the famed Betty’s of Harrogate:

The only thing I lacked was the energy to enjoy all this. I feel rather sad that a big milestone has been swamped by my treatment. 

This is my present from Dennis. It’s actually a necklace but I don’t want to wear it , resting against some skin lesion. It doubles up perfectly as a bracelet. It’s Victorian,  silver and rose gold and much prettier than this indicates.

So a huge thank you to so many of my friends who sent cards and gifts and, in Sheila’s case, a video that really made me smile. I have been surrounded by flowers, from sunflowers willing me to perk up a bit, through countless glorious roses, to mixtures which will last and last, including a bouquet from my brother which is still opening a week later! I hope I’ll get round to thanking people but this brain fug makes me forget that things need to be done. Meantime, I am well supplied with cake and chocolate. Bless you! Uh oh, it’s tablet time. Off we go to down 19 pills, 12 of them chemo! My heart sinks when I see them!

237. Numbers dropping - a good sign?

 I’ve looked blankly at this for days, in a fug of chemo-induced exhaustion. Capecitabine side effects are sneaking through but overall I’d say that the second round was no worse than the first, despite Dr U’s warning. Maybe round three will enable the poison to show its true colours.

I’m armed - anti-sickness, anti-diarrhoea, anti-hand/foot syndrome treatments. That one goes by the grand name of palmer-plantar erythrodysesthesia and can be very problematic as it hurts. These are not my hands. I’ve only got small patches so far and a herbal remedy to massage in daily. It helped with the peripheral neuropathy so fingers crossed it helps with this. This is my foot though, a little concerning.

              

The only side effect that defeats me is the exhaustion. My neighbour, the lovely Lisa, took me to the hospital yesterday. She dropped me right outside Chancellors Wing so I didn’t have far to walk to the dreaded eye clinic, dreaded because it’s always heaving with patients. I needn’t have worried. The nurse on entrance duty reeled off all the covid symptoms I needed to say no to, then I just said “No, but I am on chemotherapy.” That was that. The clinic I loathed did a volte-face and I found myself bustled into an empty treatment room where the nurse said she’d do the basic checks and then find me somewhere quiet to wait. She also, as she checked my details, wished me an early happy birthday. I’ve never received such treatment from them before, they are just too busy. But she found me an empty treatment room where I actually had a comfy armchair!! It didn’t matter that they didn’t get me through as quickly as the nurse planned - they couldn’t locate me when the doctor called for me so he started a phone consultation with another patient!

Then it transpired that the appointment was, as I suspected, an administrative error as I’d been discharged by phone in April. However, I’m back on the books so he can keep an eye on my eyelid. Scarily, he informed me that the “soft masses” in my eyelid might well be cancer as they only did a biopsy in March. Dammit, why couldn’t they have cleared out anything suspicious? So, it’s up to the chemo to do its job and then they can do corrective surgery as my eyelid will always droop! How much longer can I go without my eye makeup? It’s dehumanising!!

Then over to Bexley wing but with an hour to kill so I suggested we just sat in Maggie’s. We were provided with hot drinks, asked if they could help in any way and then left to our own devices. Dennis finds the place completely relaxing so I thought it might suit Lisa. It did. Me, I just dashed to the enormous loo they have and gave in to the capecitabine runs. Humiliating?

Dr U was pleased with my eye and thinks the swelling is going down. Same with my neck lesion, which I can’t see but which I can feel is less swollen and softer. My hair line lesions and face unfortunately seem worse but he said that didn’t mean anything at this stage. Then he started talking about my blood markers. Oh joy! Ok, it was a bit scary seeing the data on screen - all I knew early on was that they’d risen from 29 to 68 so cancer was active “somewhere.” Then it went up to 128 just before I started treatment! My anxiety rocketed. But then it dropped to 112 after my first cycle of treatment. Heading in the right direction. I went off for my blood tests and Dr U rang me in the afternoon to say my markers were down to 86. Even better. I’m tempted to say that provides the motivation for round 3 but...

Then I slept most of the afternoon!

Not surprisingly, I woke early this morning and felt I had my energy back. It didn’t last long but it was a nice feeling. Even a conversation has proved exhausting recently. I shuffle rather than walk and I’m huddled over myself protectively. It’s not a pretty sight lol.

So, treatment apparently working(I’m learning to be cautious). Energy increasing as my blood cells revive, ready to get knocked down by the next lot of tablets delivered Monday afternoon. Before that though, I have to get through my 70th birthday. I’ve already received a load of goodies from Betty’s: 

including a splendid birthday cake (thank you, Trina) and I suspect the dreaded balloons are on their way (thank you, Trina). I wonder if Dennis will do anything special (like wrap the chain he’s giving me). Best never to expect, then anything turns out to be nice.

It strikes me that this diagnosis and treatment is sapping not just my energy but also my sense of humour. We did see a beautician waiting to be let into her shop, with the most amazing trout pout. Lisa and I decided we’d never use that beautician and I don’t need to - I get mine for free.