261. Clear As Mud

Warning - miseryfest.

Tonight I start cycle 15 of the delightful capecitabine. I have no real idea of what is going on but am receiving quite conflicting messages.

Yes, the cancer is showing progression. The tumour is causing more swelling in the eyelid and the skin mets are hardening and spreading a little. I asked what will happen eventually and he said my eyelid will swell to the point where it’s permanently closed, which obviously will affect my eyesight. Surgery is rarely offered at Stage 4 and surgery on this would be too risky. Heigh ho. The slowness of the spread is unusual in a triple negative breast cancer, which is usually ahead of the chemo!

Yes my blood markers last time showed no cancer activity, being their lowest ever at 17,  and my tumour markers had dropped back to their lowest level, at 6. 

Yes, there is an apparent contradiction but we must go by the tumour, not the markers, as it may well be that the new cells are not the same as those measured buy the tumour marker to date. He’s put me down (or rather, my biopsy sample) for a test for a further mutation which 1/100 have.

Conclusion : capecitabine has stopped working in that it’s allowing some growth BUT capecitabine is still containing the spread. 

We discussed the side effects - bowel problems occasionally, constant fatigue. I asked if I should be trying harder, pushing through the fatigue as we were advised in the Moving Forward course and he said no. I shouldn’t underestimate the reality of chemo-induced fatigue and should go along with it. If I need a day of sleep, have a day of sleep. I pointed out that this was now most days but he said bear with it.

SO, I am to continue with capecitabine despite the fact that it’s no longer working so well. He pointed out that I looked well and I am well (!!) and we should wait until I feel less well before moving onto an IV treatment “because there are so few treatments available to me. If we move too quickly, we may run out of treatments.” Hmm, that rather undid any positivity I’d gained from the consultation so far.

My vit D levels are very good (not sure what difference it makes) but when I asked about IV vit C which some women are having, he’d not heard of it! He asked who was providing it and seemed surprised when I said their oncologists. I’m wondering now if they live in France or the USA, where things are done differently. That might explain it. He noted it down to follow up but I’m not holding my breath. He also talked about sending my biopsy off to see if I qualify for a new trial he is setting up at St James’s for a new, targeted drug which has fewer side effects. 

I do know what he means. There are women in excruciating pain, women with mets in almost every organ of the body, and I ‘just’ have my little tumour and a few skin mets that cause no problem.  What makes me unwell are the side effects of the chemo. My last CT scan threw up nothing new, no sign of spread, which is a bit unexpected if cape has stopped working. So we wait another three weeks, then he’ll put me down for another CT scan. I asked about the PET scan again and he said it wasn’t necessary. I’m told a PET scan lights up every malignant cell in your body so, unless it’s the same problem as with the other scans - my mets are too near the surface to be picked up and my tumour hides away - I’m sorely tempted to have one done privately. I just have this feeling that, just as my eye was diagnosed a year later than it should have been, something else may be going on that isn’t showing up.

Maybe I’m just going though a bad patch. I slept most of Saturday and most of yesterday. I think my pjs are becoming my second skin (without mets). I felt fine on Friday but suddenly a depression hit me on Saturday and, to be honest, you’d think today was my first treatment. I actually feel nervous (not quite anxious) about it.

We stopped off at Maggie’s for a bit and, as they do, a counsellor approaches and welcomes you, tells you where to get a cuppa and asks if she can help. I said YES, maybe she could. We needed to talk together about what’s going on and it’s just not happening. What followed was 5 minutes of me scene-setting, then an hour where I just let Dennis talk. The floodgates opened slowly, but they opened and, although Dennis blocked each of her suggestions, it was clear at the end that he was thinking a bit differently.  I have to say I was close to tears at times when I heard what he was saying but, amazingly, I didn’t interrupt. We both felt it was worthwhile time. However, nothing has changed. I still can’t say how I feel for fear of worrying him and he still won’t do his will or LPAs.

Ugh, the tablets have been delivered.

260. What’s Going On?

And now Marvin Gaye is haunting my brain! Well, at least it’s a sign that my brain can still function. When I hover over the keyboard knowing there’s a word I need but just can’t access, it makes me wonder what is going on in my head. I could blame the ageing process. I always blame chemo lol.

Anyway, today I received a letter from Leeds Teaching Hospitals Trust officially informing me that I should have a third primary vaccination. I had that back in November and the booster in January - I remember that night of rigors and hallucinations! I remember at the time asking my oncologist and various health professionals and no one knew what was going on, then my GP called me in for the Pfizer jab (3rd vaccination) and couldn’t fit me in when it was booster time. 

I think the hospitals are a bit behind the times, especially as today I read in the i that the government has scrapped CEV. There is no longer any special provision for vulnerable or immunocompromised people. We just get back to normal. Just like that, we must learn to live with Covid. Unsurprisingly, SAGE disagrees (so much for follow the science) and the Department of Health hasn’t informed the NHS. Arse/Elbow? To make matters worse, according to the ZOE research, Leeds has over 41,500 active cases and still increasing. So much for the pandemic easing off.

How do I feel about there no longer being a special category because the scale of vaccinations has removed the threat to us? Well, I’ve not had a letter saying I qualify immediately for the new antiviral drug if I catch Covid so I’m still a little trepidatious. Having had neutropoenic sepsis with just a runny nose, I feel a bit wary of catching anything. Covid jabs only protect me from Covid. In the last two years of shielding, I must have lost a lot of natural immunity to things like the cold. God help me when norovirus time arrives. I’ll probably hide away all summer. 

On the bright side, I’ve visited a cafe (outdoor covered area with Dennis, indoors with Carol because it was so windy) and enjoyed people milling around me. I’ve not yet ventured into a supermarket and the only shops I’ve been in are pharmacies and Lily’s, the florist’s. I bought a beautiful container with primroses- one of my favourite flowers - an azalea, a miniature rose and something else. There are a couple of primroses, but all the azalea buds and rose buds have died. There’s been so much rain, they probably drowned. An expensive primrose plant!! But I’ve bought so many flowers from Bloom and Wild (can you believe I had to go back to our email account and check the bin to find out the name of the company!!) that they gave me 50% discount so I cheered myself up with these. The stocks smell beautiful! 

The support group was ok. There was a visiting speaker but it turned out that she was telling grandmothers how to suck eggs. It was about being alert to the warning signs of cancer. That stable door was locked long ago and the horse must be exhausted by now. Some people were a bit cross, especially as she said one or two insensitive things, not understanding that those with Stage 4 are being treated to maintain life, not cured, and there is no exit from it except the inevitable. She’d got our permission to take a photo for her charity’s promotional stuff and I am absolutely mortified. Ok, I was sitting next to a young woman with a steel rod in her spine but the woman with the brightest sweater (me) was slouched, looking about 90 and bored rigid. Actually I was just relaxed but even Dennis asked why I couldn’t have sat up a bit straighter. It didn’t occur to me - I was in a very comfortable chair, thank you very much. 

Clinic is on Friday, when I’ll learn what all my contradictions mean. I suspect from what I can feel (hardening and enlarging lumps round my neck and definite pressure on my eye from the swollen lid) that I will move onto IV, something I really don’t want. But if Cape has stopped working, it’s essential - not even a week off to rest. Unfortunately, snow is forecast. Give me a break!!

259. All of a muddle

 This morning I opened the post and squealed with delight. 

What has my life come to when I am overjoyed at receiving my Blue Badge? I applied a couple of years ago because mental health had at long last been added as criteria but my medical reference apparently wasn’t good enough. I was so upset and eventually quite angry that I could be so easily batted aside by someone sitting at a Council desk. But now I not only have a large laminated badge twice the size of my driving licence, I also have a time dial, blue of course, and apparently I need to put in the time I arrive and I’ve got 3 hours!! Now I need to find where the parking spaces are.

It’s been a weird few days since I saw Dr U on Friday. The MRI showed a small progression in my tumour. Progression just means growth. So, not good news. Added to that, my skin mets have hardened again and seem to be spreading a bit. It’s not very scientific is it. It’s not like he even keeps a photographic record, which I think is a shortcoming. So we discussed the possibility that capecitabine is no longer working and what future options were. It turned out he couldn’t make that case for me to have Trodelvy, specifically designed for triple negative breast cancer, so my options are Epirubicin (which I had combined with something else and it near wiped me out, ending up in hospital with sepsis), Paclitaxel (which I had after EC for 9 weeks, including the car crash) and Carboplatin, about which I know little. I asked why he would recommend drugs that obviously didn’t work the first time and he said I might metabolise them differently two and a half years on.

So I left, I told D so he plummeted to his usual depths, and then spent time ruminating on how capecitabine could work for so little time and then, just as I get used to it, I have to come off it. I can’t believe it’s worked for less than a year but apparently that’s quite good going. Then I started thinking about what kind of life is it where every day is tied up with some form of chemotherapy, with all the crap that comes with it. I have fatigue this time. Will it get worse? Better? So, not my usual pragmatic self.

Then I decided on Tuesday to ring and ask for my blood results. If the markers had risen, I’d know to expect a change of treatment. Apparently I cant have a break because TN is particularly active and might spread to an organ or two without some kind of treatment controlling it. A breast care nurse rang me back within hours (how are they always so cheerful and charming?) and my tumour marker has dropped to 6 again, having reached the dizzy heights of 7 after cycle 12. My blood markers are 17, the lowest they’ve ever been. I was told the markers are indicators of cancer activity and these indicate none, with the tumour and mets in check.

So, what do we make of that? Physical and visible evidence saying one thing, my blood saying another. I’ll have to wait to see what Dr U thinks but it’s stopped the ruminating at least and I feel more positive that I can stay on cape for longer - and defer the inevitable bald head till it’s warmer weather at least!

Tomorrow I’m off to the support group and I am going to park in one of the disabled spots, so there! I shall still be knackered by the time I’ve walked to Maggie’s but it’s a bit of help :)