280. Too good to last

I’ve been spoilt. If I were superstitious, I’d say Dr U has taken my good luck with him. But I’m not that stupid, I hope.

Exceptional service from St James’s. Dr O put in the request for a CT scan which she said would take a couple of weeks at least. That was Friday afternoon. Monday morning, I got a call - could I go in Tuesday afternoon (obviously a cancellation) so I leapt at the chance. Taxi there so I could take my trusted lorazepam and not fidget, lovely kind Lisa to pick us up on her way home from work.

Maybe it’s the lorazepam, maybe it’s my stoicism, but I don’t seem to suffer from scanxiety. It’s a huge problem for most people who rely on CT, PET and MRI scans to know what’s happening in their body. Maybe it was that lost kidney that sealed the CT scan’s fate for me but I regard it as something the oncologist needs but not of much interest to me. I’ve had too many “suspicious areas” that have led to nothing, as well as metastasis to my sternum (which turned out to be a poorly healed fracture), false trails that could have caused months of fear had I let it happen.

Then, Thursday afternoon, the phone rings. It’s a ‘new’ doctor whose name I didn’t catch assuring me that my CT scan showed no spread of the cancer BUT… I have a blood clot now, close to one kidney. Untreated, I will lose the kidney, but it’s easily treated with a blood thinner. He then went into great detail of the pros and cons of daily, self-administered injections versus tablets. Once we established my preference for the latter, it led to a discussion about swallowing tablets and his insistence that I grab a computer and look them up. They look manageable so he said he’d prescribe them and Boots would deliver Friday afternoon. I didn’t think to say that I’d be in that morning and could pick them up. I wish I had as Boots didn’t deliver. Roll on Monday and hope that the doctor’s “immediately” will allow for a few extra days!

So there we have it. I’m still fortunate that my scans show no additional cancer and even more fortunate that the abdominal one has picked out a blood clot speedily. With luck and blood thinners, it will disperse of its own accord in a few weeks and treatment may only last 3 months. I will need to see the clot specialist (no jokes) in 3 months time and see what they say. I may have to continue for 6 months. Apparently chemo can make the blood claggy (their word, rather graphic). I now have to carry a card to show anyone who dares approach me with a needle as I may bleed profusely! (It reminded me of when I had to go to A&E during my primary chemo and spurted all over the nurse who came to take my blood - more than she bargained for). But I also have to deal with this tiny nagging image I had to deal with when I first got my diagnosis, the thought of all these nasty TN cells running rampant in my body. This time it’s that nagging thought that blood clots like to travel - what if it went to my pulmonary artery or my brain! Give me a few days and I’ll have that sorted - I’ll be too tied up in my unbeatable anxiety that new medication may make me sick lol.

If I’m really honest, I’m also having to deal with a sense of abandonment - something goes wrong the week after Dr U has left. It’s like my Inner Child feels he’s left me high and dry and there’s a little bit of hurt there. I have been so spoilt and so lucky for 2 years. I really do hope the return to Dublin works out for them all and it’s the very best decision. He’s left a huge hole to be filled and some very picky patients!

SCANXIETY

Apparently it’s a recognised term now (I thought it had been made up by a few Facebook friends): 

It should also say it covers a prolonged period following the scan as people dread what the results may be. I keep asking why people assume it will be bad when there’s as much chance of it being good news, but no one has an answer. Instinct says fear the worst. I’ve had two years of ‘nothing of note’ results and become blasé. I wonder now if that will change and I join the scanxiety brigade. Hope not!

Yesterday’s support group meeting was very good. One of the prescribing pharmacists came and chatted about her work. None of us realised that almost all the chemotherapy is actually made up in a lab sited within the Oncology department. It seems some drugs are so hard to obtain or have such a short life that they can’t even be made up until it’s been confirmed that the recipient has a) turned up and b) is fit to receive the treatment. It does explain the long delays for some IV treatments, though most people are fairly stoical about the delays. I think my longest was the 1pm appointment when I got home at 8pm! We had an excellent conversation, including questions about contraindications, side effects etc, then, after she’d left, we talked about the tragic loss of Georgina and how hard it is to come to terms with three deaths in as many months. I think some of them were thinking who’s next?

Next should expect a run on the bright blue coat. I was approached by 2 strangers before I even got to the meeting, and then had several admiring comments from members of the group. I have to say it really lives up to my description of In Your Face Blue!