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!

279. Stuck for a title

Yesterday I was seen by a new consultant, Dr O, a young, elegant woman who just asked a couple of questions and sent me on my way. I had to ask for my blood results - which are still raised but stable. Certainly nothing they are worried about. She seemed impressed that I’ve been on capecitabine for so long - whether she was impressed by my fortitude or by the fact that the stuff is miraculously working, I’m not sure. Maybe I should ask. I did have an important question for her so I waited till she’d finished writing up my prescription and then…well, I still have no idea what it was.

Age?

Chemo brain?

Information overload?

It’s bloody embarrassing anyway!

So now I need to go again next week to visit Maggie’s when the children present their donation to the charity and again, on Friday, when we have the secondary support group. There will be a pharmacist coming to talk about our treatments, side effects etc. I must write down all my questions this time. I certainly have a few as I attribute anything that doesn’t feel right to the chemotherapy when it might easily be some of the several others meds I take routinely. I have thought of visiting my local pharmacy and asking J, the main pharmacist who worked for 15 years in oncology at St James’s. But knowing the cause is one thing. Would I be willing or even allowed to give up the offending medication?

Then I have a CT scan to come. It’s actually a month late already.

Meantime, a bit of detective work has led to a delightful online purchase. It started with one of the usual Waiting Room Feet photos in one of the Facebook support groups. The coat caught my eye and… there it was in Next. Ordered and delivered within 48 hours! I just hope this woman isn’t a patient at St James’s. I think two such coats might be a bit much for the poor staff and patients! Certainly, no one is going to miss me in this coat!

It IS the blue of the other pic -
In Your Face Blue!

278. Sadness and smiles

The smiley bit

It’s been a strange few weeks but reality hit again when the lovely George who was a member of our support group at Maggie’s died yesterday. Again, I could shed tears for her but still not for myself. George’s death came as no surprise. I have watched her this year struggling with various treatments, arriving full of optimism one month, another month sitting and chatting quietly with no hair and such yellow skin you just knew her liver was packing up. Then off to another treatment - and not one word of complaint. Like Fran, she was one of Dr U’s patients and so sad he was leaving - and she died 5 days later. How do medical staff cope with all this??

What makes me angry is, as you can see from the photo, George was so young. The statistics still say only about 9% of Stage 4 BC cases are under 45. Try telling that to my group, most of whom are young, like George, with young families they know they are going to have to leave behind. It is just so cruel and so unfair. Then you remember that fairness has nothing to do with this. it’s all down to luck, bad luck, unpredictable luck and more luck. George’s husband opened a JustGiving page this morning with a target of £1000 for Make2ndsCount. When I visited the page at about 3.30, he’d already raised over £3,500 which just proves how loved and appreciated George was. It’s over £4500 now. Ok, nothing like the millions Bowelbabe raised but it’s all going to help research into secondary breast cancer. I know George will have approved and it gives her husband some purpose. Yet I still get no sense in myself that this is going to be my fate. Totally weird.

Easter came and my giant Cadbury’s egg went. I exaggerate - I still have a piece left so I’ve made it last 5 days. I could taste it better this year but it’s still not the same. It was accompanied by a delightful set of bunnies and eggs that Sheila sent me. I was having a rough time with cape tummy so no Easter Egg hunts in the garden but I had fun ‘hiding’ them at various places in the bedroom. I can’t find some of them! And it was all topped by a beautiful arrangement of golden tulips and blue hyacinths (thank god for autocorrect) from Trina. I think the hyacinths are going to last for ages. Then of course we have my dramatic amaryllis which is flowering beautifully but is so top heavy, it’s uprooted itself and won’t cooperate with our efforts to repot it. So it’s now got a kind of scaffolding to hold the beast in place. It’s going to be so stunning once it opens. Question: can I keep this one ‘alive’ for next year, something I’ve never yet managed!

The smiles came today. I had a lovely lunch with some former Parklands friends (and Parklands barely got mentioned) and Anne told me that her 2 older grandchildren (9 and 7) did another bake and lemonade stall, with flyers, personal invitations plus home delivery on orders! How good is that. It’s so good to know that, despite all the technology, homework, social media etc, there is still room for kindness and consideration. Apparently they did it for me and their friend’s friend and the money is going to Maggie’s. Bless them!! And the adults behind the scenes clearing up the mess, keeping the kids safe… Hard work and much appreciated xx

Clinic tomorrow - despite the doctors’ strike (which I whole-heartedly support). I wonder who I’ll see…

Anya and Emmy far left