Firstly, I'm feeling lots better; my energy levels have pretty much recovered and so has my mood - my chemo brain still does random things but I'm learning to cope with that and get Ian to double check anything important. So sorry for the rather miserable last post 🎺and thank you everyone who got in touch.
For the last 7-10 days (Ian thinks longer) I’ve been aware of a strange feeling in my left forearm. I wouldn’t have said it was painful as such, it felt more like a restriction in a tendon/muscle when I straightened my arm but nothing worth mentioning to the nurses.
However yesterday (Tuesday/Day 12) when I woke my arm was rather swollen, red and very painful. We know there is an increased risk of a DVT, both though chemo and having a PICC line but of course DVTs are more common in the leg. Anyway, what to do ? I hate making a fuss and as I was due back today anyway for the weekly PICC line flush, I was tempted to wait and to mention it then. But we chatted it through and decided best to ring up for advice and this is where the reception staff differ so much from your usual GP surgery dragons - my line flush was immediately brought forward to yesterday afternoon.
Now you may remember last week when I saw my GP with my butt cheek rash he arranged an urgent blood test and, although he’d assured me I would hear immediately should anything untoward show up, as I was in collecting a prescription for Ian, I thought I’d double check all was OK. I must admit I was rather surprised (read cross/horrified 👿👿👿) to learn that the results from this URGENT test were “waiting for the Dr who will be in on Thursday”
Anyway back to the Galton Unit in the afternoon where the first nurse who examined my arm wasn’t overly concerned and as she’d never seen an arm DVT before was inclined to rule that out. However, as I hadn’t been bitten or bashed myself, there was no other likely explanation so she referred me to the Lead Sister who thought likely DVT (or SVT) so I was sent off to have an ultrasound. I have a "superficial" clot in my forearm but also, and considerably more worrying, a further one in my upper arm in the same vein as the PICC line - a most unwelcome guest!
Obviously I’d mentioned the totally unconnected butt cheek rash and the bloods and was reassured to know that the results were accessible by the Galton Unit. Whereas I’d been concerned about the low white blood cell count, what has now flagged up is the platelet count which had fallen from 159 (of whatever unit of measurement is used) pre 3rd FEC infusion to 89 last Friday. Platelets are essential in the clotting of blood (normal range is 140-400) and therefore having a low count and a clot at the same time doesn’t make much sense to me (neither to the nurses I think but they are very experienced and professional and never show their concerns in front of the patients). Apparently transfusions (WTF how did that word creep in😱😱😱) aren’t given until the count is below 50 and as I’m now 12 days into cycle 3 it’s assumed my count will have recovered a bit. The treatment for the clot is Fragmin which is an anticoagulant and administered by injection so I have a prescription for 28 preloaded needles 💉 to collect BUT before I can start more bloods were taken (from the hand as the PICC line can’t be used) and she'd phone me around 18:00 with the results.
Meantime the line flush didn’t happen and they now have to wait 3 days because of the DVT/ Fragmin complication so that needs to be rescheduled for Friday.
(Frustrating side issue - on the dark and rainy drive home some b*st*rd clipped our wing mirror and the rear casing fell off - we drove back to try and find it but no luck- I guess it was crushed pretty much instantly by other traffic. Just what you can do without)
The Sister duly rang and the platelet count is down further to 77 - she’d spoken to a haematologist who said to go ahead with the Fragmin injection but they now want to monitor the bloods daily until the count recovers.
So back to hospital this morning for a blood test and then wait for a phone call before injecting again (I’m so pleased it isn’t a problem for me, can you imagine the logistical nightmare if I needed a district nurse to do it)
Meanwhile the “superficial” lump in my arm has got bigger and hurts more 🤕🤕🤕
Update: Platelet count on its way back up (86 PM Wed/Day 13) so OK to inject 😁😁😁
