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 :)

258. First the good news

Great news. My kidney has been restored, my lung nodule had disappeared (so you can have infection/inflammation and be oblivious to it) and everything from my thorax to my abdomen remains the same. My blood marker has risen to 18.7 so that’s all stable, and my tumour markers have risen to 7, still within safe limits. My other blood results, way beyond my comprehension, are good. 

The bad news: I have to have another MRI to compare my tumour with September. I also have gained a new skin met and some of the others are hardening again - during chemo. It may mean I have to change my chemotherapy but I’ll wait for the MRI results first. Maybe the eye changes are to do with reacting to the tumour, not more cancer.

I also had my 4th vaccination, my booster. My GP practice of course couldn’t accommodate me as I need it at a specific time, ideally halfway through my week off. They advised me to try the Elland Road Hub. Well, I remembered the day and a half of not getting through but I tried again and got straight through, She was really good, understood my problem, looked up my records and said my immunity ‘ended’ Thursday so would I like an appointment Friday???? I was gobsmacked. I had clinic and bloods to do but she suggested 2.35 and Lisa yet again drove me. I was fine driving to the hospital but the thought of the Armley gyratory left me quivering in horror. It is close to where I worked so I needed to use it a lot and I’d say 50% of the time I found myself heading back to town or stuck on the motorway because I got in the wrong lane. No way was I up to driving there. I was gripping my wrist with Lisa driving - too many lorries and big vans either side of us!

When we got there, Lisa asked if she could park on the road, close to the entrance, as I was having chemotherapy. Well, I was treated like royalty (or a poor frail woman) after that. I registered, moved on to the next bay for a medical person to do my preliminary check, a steward brought forward a chair so someone must have rung through! I was told I was having Moderna this time so there was much less likelihood of a repeat of the mild flu-y symptoms last time. Then I moved on, was injected and told that, as I wasn’t driving I needn’t wait. The great thing was seeing so many children there, mostly high school, waiting after they’d been vaccinated. I could imagine school saying you can have last period off if you pop into the vaccination centre on the way home! AND Lisa was waiting right outside.

I felt fine after that. The irony was that, within an hour, my GP practice rang to say Dr L had given the go-ahead for them to offer me the vaccine at my convenience (not had a reply to my complaint yet but maybe it’s had an effect?) Then maybe 11.30, my skin began to crawl so I decided I’d get to bed and try to sleep through it. I woke half an hour later with rigor. Fortunately I recognised it from when I was admitted with neutropoenic sepsis in 2019 so I didn’t make the mistake of thinking it was a weird panic attack. I used the relaxation technique from Progressive Hypnosis and managed to stop the violent shakes after an hour or so but the inner shakes took longer. My Fitbit showed I was asleep but actually I was just mentally relaxed as I fought the shakes. Then I started hallucinating. It was totally surreal. I didn’t know if I was awake or asleep and couldn’t move. I stayed like that till 7am, after which, with a glimmer of daylight, it felt safe to sleep. What a night. I can safely say I have never felt so ill. I’ve been worse, as in 2019, but then I didn’t feel ill, I just was ill.

When I woke I was utterly exhausted but felt that ‘crisis’ had passed. Anne popped by in the afternoon so I had a chat with her, door open and safely distanced and I was able to give her her Christmas present at last. I’m still in bed, obviously a lot better, no repetition of the rigors. The oncology nurse rang me this morning to check I was ok and seems happy enough so I think that’s over now - and better than catching covid.

And that’s my life - a catalogue of medical stuff. I need some more people. But I have two more weeks before I can unleash myself on the outside world - and I don't know all the rules because they’ve never applied to me.

257. New Year - where’s the Happy?

You may remember my early determination not to resort to a pity party. Well, I failed miserably.

We went to Kevin and Carol’s on Christmas Eve, which we’ve always done but missed last year. D did his first Lateral Flow Test!! Chocolate gateau and tea/coffee with a good chat felt almost normal, apart from my having to wear my mask when not eating. Carol gave me some beautiful antique roses which are still thriving. I sometimes think they do best when neglected!

Someone knows me well!

Christmas Day was beyond awful. A lot of those thoughts I kept boxed away safely crept out. Underlying it all was the dreadful thought - what if this was my last Christmas? It was going to be pretty crap anyway - Dennis had obviously decided that the monthly bouquet (which I had to organise) was enough so he presented me with a drawing of my favourite Banksy picture (no message) and added sprouts to our usual Sunday roast! I don’t know why I ever hope for more. Anyway, once the thought had escaped - this could be my last Christmas - I got this weird idea that if I didn’t acknowledge it, then it wouldn’t be Christmas and couldn’t be my last. Confused? I was. The result was I didn’t open a single present and didn’t switch on the mini-tree. The Christmas cards were up but that was it. Christmas didn’t happen.

I can honestly say it was one of the unhappiest days I’ve had. I was in a mire of misery. Fortunately, it felt safe to open my presents on Boxing Day and I got some lovely, thoughtful gifts, including a heated button up shawl to wear, along with my cosy blankets, in The Shed. All I need is one of those Victorian footwarmers and I think that’s every inch apart from my nose covered!

Bank Holiday Monday, I was scheduled for my CT scan. So much for the 13-week waiting list Radiology declared they faced and so much for not needing a scan this quarter. My appointment was 5.30 and Lisa was able to take me. That was a good job as everyone else was still away or sozzled by Christmas spirits. I got a phone call at 9.30 asking if I could go in earlier as my file says Difficult to Cannulate. Will I ever lose that reputation?? Earlier meant as soon as I could manage in the morning! I dragged Lisa out of her lie in, had a quick shower and we were there by 11.15. By 11.30, I was cannulated on the first attempt SO THERE! I am NOT DIFFICULT. The CT scan was fine though I’m never prepared for that surreal rush you experience when they inject the contrast dye. In this case, because I couldn’t understand a word the radiologist was saying, it was so distorted from their safe distance. Anyway, I get the results on Friday - and I told him to make sure I had two kidneys. Actually, the nurse who cannulated me checked and their record has been amended. Odd that Oncology is left with the original but with a neat line through the word ‘kidney’.

My first bouquet arrived on the 30th so D is partly forgiven. OK, I chose it but it is stunning. The 30th would have been Mum’s 94th birthday so it felt kind of special. Then came New Year’s Eve and at 3pm, straight after lunch, I was struck by capecitabine tummy - cramps and more cramps. Without exaggeration, I spent three blessed hours on and off the loo, and spent the rest of the time in a miserable ball of pain. The problem is, it would be easy to take loperamide to stop the diarrhoea or Buscopan to stop the cramping but it’s only delaying the inevitable. New Year’s Day wasn’t much better - it hit as soon as I’d taken my evening tablets. I’m embarrassed to confess I watched Taskmaster from the en suite loo. Oh, is nothing sacred once you get cancer??

I was also upset by what a friend posted in our small WhatsApp group: “Well ladies, it’s cheerio to 2021, it brought challenges but we’ve all had a lot to be happy about. Here’s to 2022…” Excuse me? A lot to be happy about? I really thought hard about that one and the only thing I can think of that she would think I could be happy about would be the good response to chemo. But I’d have been a lot happier if I didn’t get the diagnosis, if I didn’t suffer from the side effects and if I didn’t know it can stop working at any moment. I know her. I know she meant well and probably meant it to be encouraging but it didn’t work. I was angry and disbelieving at first. Now I just feel sidelined.

So now we wait for Friday. It’s bad timing because it means I can’t go to the support group this month. I’m not expecting anything different as the CT scan doesn’t show skin mets but I’m not happy with how they are doing. They don’t seem to be reducing in size, 12 cycles of chemo regardless. I’ll need to ask Dr U. I also need to ask for a referral for some emotional support. It feels too soon for a hospice referral but that appears to be the route and it will mean I can get therapeutic treatments like acupuncture and reflexology and join art groups etc. Am I ready for contact with my ultimate destination? I’m not sure how D would handle that. 

256. Human Pin Cushion

Sad to say but my veins are beginning to protest loudly at what they consider gross mistreatment. My favourite phlebotomist failed three times to get blood. Of course, that may be my body saying ‘Nope. I need all I can get’ cos I am sadly short of the necessary blood cells and vampiric urges sweep through me occasionally. You’d think they’d offer a simple blood transfusion but I’m not down to the qualifying level yet. I have to say it’s a weird feeling looking down at a needle inserted right to the hilt and not a drop of blood appearing. Of course, as soon as she removed the needle, blood started pouring down my arm! Anyway, the phlebotomist was about to call for the Big Man, the head honcho who never fails (huh) , but decided to go back into the first site et voilà, blood. Enough to fill two vials and provide the required data a day earlier than advised. I’m past caring on that one. I did NOT want to go back the next day and the chances of getting bloods done locally is zilch.

All is well. My blood markers are at 19 and my tumour marker is at 6 still. When I said I wanted that figure to drop, Dr U said he didn’t and he showed me the critical figures that put you into their red zone and it was anything below and including 5. I can’t say I understand it but it’s good enough for me if it’s good enough for him. I am, as they say in one of the F/B groups, Stable Mabel. 

The 13-week waiting list for CT scans was nonsense. I’m booked for my scan on Bank Holiday Monday at 5.30. Merry Christmas everyone! Apart from identifying that lost kidney and (let’s hope not) finding more suspicious areas inside, the scan seems pretty pointless as it’s not designed to pick up the areas where my cancer has so far settled. An MRI shows the tumour and I had one in September so it will be several months before I’m offered another (unless those markers start rising).

On the down side, having had a pretty miserable two weeks bowel-wise (my English is deteriorating!), I asked about my side effects and he said this was pretty much it after 11 cycles. I’m stuck with what I’ve got. That means

• Unpredictable bowels and hours spent sitting on the loo, often in the early hours of the morning when I keep my eyes closed as much as possible, in the vain hope I won’t fully wake up.
• Insomnia. I feel sleepy at 10 or 11pm then I am wide awake till 2 or 3. My kindle and the continued struggle to read Queen Lucia to the end (3 weeks now?) is helping me fall asleep.
• Unpredictable fatigue, meaning days when I just can’t find the energy to get out of bed and…
• Being able to walk very short distances and getting rather breathless, which I can tell you is not much fun when you’re wearing a mask.
• Sore toes and numb fingers, not much use to anyone.
• Self-pity.

So, great news on the cancer front, less great news on the body front. We’ve been invited to our friends’ house Christmas Eve and I’ve been invited to lunch at Cookridge Hall on Wednesday but I don’t know if I want to take those risks. The guidance is pretty vague this time. I’d rather be instructed to shield till I get my booster in a few weeks as it’s due on 14 January (if they go by calendar months) or earlier if they mean 12 weeks. Who knows? I think with that booster, I’ll feel more confident but it’s all too uncertain for me. I don’t want to break free and then find myself on a ventilator (how will I take my chemo???). Maybe it’s best to stay semi-shielded? 

Anyway, I’m off to wrap the few presents I have bought and sort out delivery. I’m sadly lacking in Christmas spirit. Even my little tree has yet to be decorated but, this year, not a needle has fallen - YET.

My beautiful Christmas bouquet

255. Big Wide World

 This cycle so far has been remarkable. It’s day 7 and I still feel FINE. My mouth goes a bit funny as the day progresses but that was happening before I started this chemo, and of course everything is dictated by the bowel issue. Yesterday I slept and slept, so much so that I woke this morning believing it was Sunday. However, I’ve been mobile, I’ve socialised and generally been almost normal. I do suspect part of the problem is I don’t push myself at all. If I’m tired, I just don’t get dressed. That consigns me to yet another day of reading (if I’m lucky), puzzles from the newspaper, tv and internet. Hardly a healthy lifestyle.

Last week, despite being on the chemo, I drove myself to various situations I’ve not been in for so long. I’ve almost forgotten how to be me.

Monday: Cookridge Hall, met Carol for a coffee after her swim. I know I planned to renew my membership this month but, right now, I couldn’t walk down to the pool without feeling exhausted. I’d probably sink!

Wednesday, Book Group, discussing one of the worst books I’ve ever read - Queen Lucia by E.F?Benson. I hadn’t read more than a third. The group was divided between those who gave up, those who raved about it and have either read or plan to read the whole Mapp and Lucia series, and those whose reaction was lukewarm. It was good to be back among people. Obviously because cake was involved, few were wearing masks and we weren’t socially distanced but the window was open, two others in the group have cancer as well (????) and obviously felt it was safe so I relaxed, removed my mask for tea and cake and for expressing an (uninformed) opinion. 

Friday I attended a support group at Maggie’s, run by Breast Cancer Now and facilitated by a trained therapist. I think there were about 14 there and there was a little distance between seats but it certainly wasn’t socially distanced. Yet, despite everyone having cancer and some of us immunocompromised, only one person was wearing a mask and she was heading off for chemo after the group ended. I can’t tell you how good it felt to be among women who understood exactly what I might feel and someone on the same chemo. We’re obviously very different - she gets copies of all her reports and does research; that’s anathema to me. The heart-breaking thing, apart from the facilitator announcing that one of the group had died that week, was that most of the women were so young. Statistically, only about 7% of breast cancer patients under 50 go on to develop secondary bc, yet here I was with young mothers each side of me. I’ll allow for the fact that I’m ‘old’ in terms of the demographic but how they manage to look after a family defeats me. One of them is in and out of hospital with neutropoenia for days at a time…

I finally plucked up the courage to email the practice manager of my GP practice, outlining all the areas where I feel they could have done more and I might have had an earlier diagnosis. To soften the complaint (I’m such a wuss) I started by asking what their protocols were for women who were identified as high risk of a recurrence or of secondary bc and for people who have secondary cancer (of any kind, understood I hope) but I ended by saying they had made me feel invisible. I do feel neglected - only one other woman in the group had not been in regular contact with a GP since their diagnosis and had been contacted immediately by their GP to offer support. Huh! And all of them are in this situation now, so the practice can’t blame covid. I felt incredibly sad after I wrote it. I think that was Tuesday. I received an automatic response asking patients not to contact the practice as they are extremely busy. But today I got an initial response, with an apology for how I feel and an assurance that she will look into the complaint. I hate calling it a complaint. Funny because if it were something I’d bought, I’d be standing on firm ground but when it comes to what are, to me, authority figures, I’m on very wobbly ground.

I wrote a response on one of the secondary bc Facebook groups, because I don’t think encouraging newcomers to do research is necessarily right - it’s helpful for some, it’s a nightmare for others. I even gave my own example, when I was horrified to find my chances of survival were below ‘Poor’.  I’m not quite sure what went wrong, particularly as the woman who posted agreed to some extent but she’s being treated in Paris where, apparently, they are all enrolled with some college and encouraged to research under guidance. It’s that last bit that’s so important. Anyway, I’m mean, rude and patronising. There you go, that’s me told. All because I don’t agree with something and say so. I guess it’s how it’s said but I said it no differently from usual. Incidentally, it took me about 30 seconds to remember the word’ rude’ and a minute of memory-searching to locate ‘patronising’. Is that age or chemo? It’s actually an intriguing process, once you get past the frustration. I wonder if everyone uses the same methods/

One more week to go. I HATE having to eat and take tablets to order.