When it’s progress but it doesn’t feel like progress.

A change in cancer treatment during March brought some surprises, some of them welcome, but some of them not.

Alt text: A box containing a pre-filled syringe, two large plasters in their wrapping & a very small tube of cream lay on top of a brown, faux fur bedspread.  There is a large, red cross drawn across the image.

Towards the end of March I had a review with the Oncology team at Charing Cross Hospital (West London, UK).  I hadn’t seen the team for about 2.5 years so I was looking forward to catching up with my oncologist.  I’d planned ahead, asking the Breast Cancer nurses if I could see my named consultant which was agreed.  However, despite my best efforts, this didn’t happen, apart from a brief ‘hello!’ when she stuck her head around the door of the consulting room to ask her team member a question unrelated to my case.

My oncologist is great & I’m happy to be under her care, but I do wish I could speak with her directly.  I did call ahead to request a consultation with her which I know was received by the Breast Cancer nurses & acted upon, but again, I saw one of her registrars.

I wanted to speak with my oncologist directly because she would benefit in her understanding of how the cancer treatment is affecting my disability.  I think it’s important information for medics, researchers and disabled people with Spina Bifida to have to hand.  They could use the information to provide kinder treatments, if appropriate.  But my oncologist plays the side effects down (her favourite saying is “well we treat people with all sorts of underlying conditions.”)  When I have told her what I’m grappling with, she panics & starts hyperventilating about how I can’t give up the drug (yeah, an oncologist who panics!)  I don’t want to give up the drug, I just want some acknowledgement of how hard it is to experience these side effects & how it could be useful to report them somewhere official.  Anyhow, it was nice to see her, briefly.

My review appointment was with one of her team (always lovely, kind people) & as always, a Breast Cancer nurse was present.  This time Stephane (my partner) came into the consultation room too.  It was so great having him there as he could validate that I was being truthful about the emotional and physical strain of the side effects.  

At this review appointment I was expecting that my Zoladex injections would stop which the registrar confirmed.  I’d come to the end of the course (5 years of being injected into the stomach every month is grim!) & because I reached the age of 55.  (I didn’t know this but a friend of mine told me that at 55 years old, women stop receiving contraception).  My GP hadn’t ordered me any more injections after March & I’d called the MacMillan Nurses Navigator line (a free service you can contact whilst you’re in treatment) before my review to find out if this treatment line was stopping & they confirmed it too).  Then I asked about what side effects I might experience after stopping Zoladex.  My Navigator nurse said none because there aren’t any side effects.  My GP said that I shouldn’t have any side effects either.  But I did have actual side effects from Zoladex when I was taking it.  Each time I had the injection, I’d feel absolutely exhausted & experienced ‘meno-brain’ until the next day.  The Navigator nurse didn’t know how to respond to the side effects that I was reporting in except to say that it was ‘unusual.’  And that proves my point about my Spina Bifida body having different reactions to treatments than other non disabled patients.  Surely that’s to be noted?

Happily, the registrar present at my review confirmed that the injections would stop.  I asked her about side effects after stopping.  She & the Breast Cancer nurse looked very confused & said that there wouldn’t be any.  I detailed my side effects whilst on the treatment to them both.  All they could say was that it was ‘unusual’ (that word again!) & that these effects would stop altogether because I wouldn’t be on the drug going forwards.

I’m writing this blog at the time when I should have been receiving my monthly injection.  I honestly can’t tell if my body is craving the injection or not.  I think it’s too early to tell.  But I do feel hungry all the time…

Then to my surprise, the registrar said that she’d been reviewing my bone density scans & seen how very thin my bones had become & how bad the Oesteoporosis was in my lower spine.  As a result, a decision had been made in the MDT (Multi Disciplinary Team) that it was the right time to swap me from Letrozole to Tamoxifen.  I was surprised, but at the same time, I know the cancer treatment & recovery paths aren’t linear.  I did panic a little but the registrar listened carefully to the side effects that I’d been experiencing on Letrozole – bad nausea & vomiting, headaches, hot flashes & flushes, dry eyes, brain fog, chronic fatigue, anxiety, horribly painful joint & muscle pain – well the list goes on.  Stephane validated that it was just as bad as I was saying & how upset he’d become seeing me trying to cope & missing out on aspects of my social life because I was so tired.  The registrar & the Breast Cancer nurse expressed sympathy & how sorry they were that the treatment was so very tough.  I appreciated their kindness in the moment, it was comforting to me.

I expressed my fears about switching to Tamoxifen.  I’d taken it in 2020, during the 4 months between diagnosis to surgery.  In that time I’d experienced crushing bone pain in my sternum, collar bone & ribs, my hair started to fall out & my short term memory was obliterated.  More frightful than that, another lump grew next to the lump that I already had in my breast!  Was it going to even work as successfully as Letrozole?  

I was expecting to swap to Tamoxifen in March 2028 & be on it for the two remaining years of my treatment.  I was concerned that swapping earlier might leave me vulnerable to a recurrence.  The registrar gave me a lot of reassurance that it was the right time to stop because of my thinning bones, that I was post-menopausal now so it was the right time to swap. She also reminded me that Tamoxifen was an aromatase inhibitor drug too, so I was kind of swapping ‘like-for-like.’  The Breast Cancer nurse nodded away in the corner.  I pressed my point again but the medics pushed back, saying it really was the right time to stop.  I asked if I could delay taking Tamoxifen for 3 months because I wanted to look good for a special event that I’m attending in June (imaging myself looking really ugly with bad skin, hair & nails whilst everyone else was the picture of health on the special day.  The register said firmly that there was a month’s supply of the drug at the hospital pharmacy for me & that she wanted me to stop taking Letrozole that very night.  That was me told!

There was a brief discussion about me taking Alendronic Acid once again to protect my bones.  I explained that I wasn’t keen on doing that because I caught Mastoiditis (an infection in the bone behind the ear, a rare side effect of these bone infusions) on the last Zometa infusion (you have this through a drip, it’s the liquid form of Alendronic Acid).  I reiterated that in general I have bad problems with my teeth & jaw.  Even as I’m writing this, I’m experiencing terrible pain from a new bridge that’s been put in to replace a lower tooth.  It’s toothache, but I actually haven’t got a tooth there!  The dentist x-rays didn’t show anything untoward, no infection, nothing!  My jaw is killing me, especially in the area of the false tooth.  Again, pain relief doesn’t help.  All I can do is put a little spot of arnica salve cream on my chin to ease the pain!  My dentist is as confused as I am about it all!  It just says on my dental records ‘a-typical facial pain.’

Back to the review appointment – the registrar booked me in for a treatment review in 3 months’ time (June) & the Breast Cancer nurse gave me a leaflet about Tamoxifen.  I didn’t really have a chance to tell the registrar that my body takes ages to get used to a new drug, so doing the review in 6 months might have made more sense.  Then Stephane & I went to celebrate at Maggie’s Centre on the hospital site.

Once home, I dutifully replaced my Letrozole for Tamoxifen in my dossett box & took the unused Letrozole back to my local pharmacy for disposal.  I took my first Tamoxifen tablet that evening – it tasted incredibly bitter & it was much larger in size than the other drug.  Then I waited.  

Nothing happened for the first 5 days & then boom, horrible, horrible side effects!  I had a terrible migraine that wouldn’t shift for 4 days.  None of my migraine medication worked.  I had to slather a ‘4Head’ pain-relieving stick across my forehead (other brands are available!) & rub white tiger balm into my temples.  I had to lie still & cover my eyes because my light sensitivity was so bad.  At the same time, the sickness hit & I couldn’t keep any food down.  I thew up my anti-sickness tablets.  I drank copious amounts of cold water to keep hydrated.  And I was so incredibly hot all of the time.  It was the Easter holidays & I’d taken some time off to help Stephane decorate our hallway.  I couldn’t do any of that & I could eat my Easter egg either!  I was raging!

Then after 4 days the migraine subsided & I stopped being sick.  I get fewer headaches.  My nausea & sickness aren’t so frequent, but I keep eating too much.  I’m finding out why they say weight gain is one of the side effects of Tamoxifen.  My hot flashes & flushes seem to have eased a little.  I seem to have more energy (but that might be because the mornings and evenings are much lighter).  My joint & muscle pain seems to have eased, but then the weather has been warmer – warm weather is much kinder on my bones.  

I hope this new trajectory continues but that’s why I’ve given this month’s blog the title that I have.  In theory, I should be celebrating because I’ve done well so far on the treatment & I’ve been able to go onto a new drug that will also be kinder to my bones.  However, when I was in the midst of the worst side effects during the easy stages of taking it, it felt like I was going backwards in my treatment.  How could it feel like progress with my head stuck firmly in the toilet?

However, ranting aside, I’m still here (for which I’m truly, truly grateful for), the treatment might be finished in 9 years’ time instead of 10 & I’m looking forward to seeing my brother in his folk band, Evolution Of Fisherman tonight at St. Pancras Old Church, Kings Cross, central London.

Look after yourselves, folks!