I’ve been a little tardy in updating the blog since I was discharged from Southampton General Hospital a week last Tuesday afternoon (18th June). I’ve generally had a very laid back time since then, resting most of the time and having a lot of naps.
The discharge from hospital took a few steps, including having another infusion of platelets to bring my count up, and having had my central line removed. Although it was great to have the central line fitted whilst I was an in-patient (no needles required to take blood samples or administer drugs), it’s nice to be free of it now.
Immediately after discharge I was first at my parents’ house for a few days (because there had been a slight tummy bug at home and I was advised to leave it a couple of days) before coming home on Saturday. Just getting home was great in itself, but the best part of all was seeing Felix, my nearly-3-yr old son again, whom I haven’t seen since I went into hospital. He played his part beautifully – I was aware of the possibility for him to barely bat an eyelid when he saw me – but instead I got a massive hug which was so tight it squeezed a few tears out of me.
I also had my first follow-up appointment at the hospital this Tuesday (25th June). Generally all good, although amongst the blood counts the neutrophil count is still hanging quite low (at 0.6), so I need to be careful about infection for a while longer. Next clinic appointment is in two weeks – hopefully it’ll have picked up significantly by then.
So for now just having a quiet time at home. My energy levels seem to fluctuate quite a bit – I’ve had some days where I’ve had naps in both the morning and the afternoon, whilst on other days I’ve not felt the need to sleep at all. Slow and steady I guess, and in the meantime there’s always Wimbledon on the TV…
So as far as I can understand what happened, the consultant (Le Grand Fromage) overruled the Registrar and has said that I can go home today after all! The blood counts are still a little low today (neutrophils 0.6 and platelets 34), but the plan is to give me another infusion of platelets and another of the bone marrow boosting GCSF injections to boost the counts a bit. Apparently they are then confident enough that I’ll be up in, and stay in, the safe region.
Should be having the platelets in and my central line taken out this afternoon, and then I’m good to go! Apologies for the yes, no, yes roll-out of announcements – I’m just delighted to be going home today after all!
In the event it turns out that I’m not going to be going home today unfortunately. Yesterday my neutrophil count had dropped back to a level at which they wouldn’t be happy to discharge me (0.6). In fact a drop in the count was expected to some degree, because all last week I was having the bone-marrow boosting GCSF injections, but Friday was the last one. So now we’re seeing the unaided performance of my bone marrow. The blood counts should start coming up quite soon, but until they do I can’t be discharged. So perhaps Thursday to go home? Starting to get a hint of cabin fever stuck in this room now, but it’s bearable for a few more days yet…
On the verge of being discharged from hospital (probably tomorrow), I want to give an overview of what my 3-week stay has been like. Less so for the friends and family for whom I use the blog to update them on the latest, but more for others who may come across my blog in looking for information about what treatment for myeloma / amyloidosis is like. I realised looking back over my posts from my stay that it might be difficult to get such an overview, in particular because I tended only to post on days when I was feeling OK, and there were also plenty of days when writing new posts was quite simply beyond me. So below is just a brief summary of what each day was like over the last three weeks.
One caveat that I feel I should mention is that I seem to have recovered quite fast. Whilst it is obviously not good to have been diagnosed with myeloma and amyloidosis as a fit young 38 year old (now 39), it has meant that I have been able to tolerate the various treatments well. My experience set out below may not be typical. For example, when I was admitted, I was told that a 4-week stay was quite common. Also whilst I’ve lost a lot of hair, I still have a thin covering all over – I believe that a more complete loss is also common.
[CB = Cells Back – the medics seem to talk in terms of dates measured relative to when you get your stem cells back]
Mon 27th May (CB-3) Admission. Hooked up to loads of IV fluids.
Tue 28th May (CB-2) Melphalan administered. Lots of IV fluids. Felt OK, no noticeable immediate effect.
Wed 29th May (CB-1) Velcade administered. Had a poor night. Very tired and drained all day from yesterday’s melphalan.
Thu 30th May (CB) My stem cells returned. IV Steroid beforehand. A little tired.
Fri 31st May (CB+1) Was hard to sleep due to the steroid. A quiet day – feeling OK.
Sat 1st June (CB+2) A quiet day – feeling OK. Starting to notice some change in mouth sensation.
Sun 2nd June (CB+3) Bit slow today – not feeling too bad, but lethargic. Felt very cold in the afternoon – lots of naps.
Mon 3rd June (CB+4) Feel OK, but lethargic and taking lots of naps. Neutrophil count now essentially zero.
Tue 4th June (CB+5) Quite lethargic, though still feeling OK; napping a lot.
Wed 5th June (CB+6) Mouth starting to get sore; napping a lot. Taking paracetamol for the mouth.
Thu 6th June (CB+7) Sore mouth bothered me overnight. Both mouth and throat starting to get very sore; move on to oral morphine.
Fri 7th June (CB+8) Mouth and throat very sore overnight – taking oral morphine / paracetamol. Very painful to swallow anything today. Move on to IV morphine. First platelet infusion.
Sat 8th June (CB+9) Mouth and throat very sore overnight – taking oral morphine / paracetamol. Mouth and throat helped by the IV morphine. Second platelet infusion.
Sun 9th June (CB+10) Difficulty sleeping and soreness overnight. Hair loss starts today – slowly in the morning, much faster by evening. Increased the IV morphine dosage.
Mon 10th June (CB+11) A poor night – taking painkillers whenever allowed. More hair loss today. First hint of a neutrophil count (0.2).
Tue 11th June (CB+12) Slightly better night. Hair loss seems to have eased off. Quite lethargic. Neutrophils 0.5. 3rd platelet infusion.
Wed 12th June (CB+13) Managed the night without additional painkillers, though poor sleep. Some appetite back today. Neutrophils 1.2. 4th platelet infusion.
Thu 13th June (CB+14) Very disturbed sleep – crazy intense dreams – morphine related it seems. Very tired all day – falling asleep whilst in conversation. Stop the IV morphine.
Fri 14th June (CB+15) Had a better night. More rested today. Neutrophils 2.2.
Sat 15th June (CB+16) Feeling more normal.
Sun 16th June (CB+17) Feeling very normal today. Normal appetite back.
Mon 17th June (CB+18) C’mon, I want to go home now.
I posted on Friday that I had turned the corner in my recovery. Saturday was good, but today is on a whole new level. The medics said that once I started to pick up, I would pick up very quickly, but I didn’t quite realise how much. Today I’ve wolfed down both breakfast and lunch, and had loads of drinks in between. Previously I’ve never quite managed to regulate my temperature right – putting my beanie hat on, taking it off, wearing a dressing gown in addition to normal clothes, taking it off, really feeling the chill when getting out of the shower and so on…
But today that all seems to have gone and I’ve comfortably showered, dressed normally and sat around all morning without feeling the need to put the beanie on. And the other thing that the medics predicted was that I would soon be asking them if I could go home. At the end of last week it was suggested that I might be released on Tuesday (18th June), but at the time that seemed like quite a scary prospect that I wasn’t ready for. Today though that seems like a great idea. I can see that many more days in this room would probably drive me a bit mad (even though it’s not bothered me in the slightest up to now). And moreover I can’t wait to have a few home comforts, eat my own food and most of all see my son, Felix (nearly 3) whom I haven’t seen (other than on Skype) since I came in.
Roll on Tuesday!
I think I’ve really turned the corner in my recovery, but there’s been the odd hitch along the way.
Medically the most significant thing has been that my neutrophil count has just picked up and up over the course of this week. From still being zero at the weekend, on Monday morning it had crept into the light with a value of 0.2; on Tuesday it was 0.5; and on Wednesday it was 1.2. Not sure about the value yesterday, but today brought the heady heights of 2.2. And this has directly correlated with how I’ve felt: the early hours of Wednesday was the first night I didn’t have to call for oral morphine and paracetamol to get me through the night. My appetite has also picked up over the week and though still not huge, I’m enjoying and even (craziness personified) looking forward to each meal.
One difficulty this week has been the IV morphine, which I’d been on since Friday 7th June. At the time it was a godsend, and in fact I wish I’d asked for it sooner, as the sore throat and mouth at the end of last week (due to mucositis) were awful and gave me some of my worst days in hospital. One rather unexpected side effect of the IV morphine however has that it’s disrupted my sleep quite significantly and curiously in that it’s stopped me sleeping normally. This culminated this week on Thursday when I woke at 1.45am from the most intense dreams I’ve ever experienced, drenched in sweat and tense all over. After that it was difficult to sleep at all for the rest of the night. Previous nights had been similar, though less dramatic. Later on that day when I saw the doctor, we decided to switch off the IV morphine (the dosage has already been reduced in fact). I was still desperately tired though and kept nodding off, narcoleptic style, in the middle of conversations with people. And yet it was very difficult to have much of a resting nap – the dreams were just too exhausting.
However, having come off the IV morphine I’ve had a much calmer, more restful night’s sleep and today I’ve been much less tired and have generally felt more relaxed. So the message seems to be – take the IV morphine as soon as you need it, but get off it as soon as you don’t.
Well to be honest I was more tickled than anything to make a start today on the Guardian Quick crossword only to see that 1 Down is “Alopecia (8)”, the answer being “baldness“. The only other answer of any relevance to my present situation was 11 Across: “Nurse”.
Anyway, I’d like to point out that I’m not completely bald (yet). In fact, although a great proportion of my hair has come out over the last couple of days, it seems to have gone in quite an even fashion, basically just leaving me with the same hair style as I had before, just at a greatly reduced density:
Still the hair continues to come out, though much slower now, so it seems that I may end up fully bald in a days to come. We shall see.
The really good news from the last couple of days is that the mucositis seems to be coming under control. My neutrophil count on Monday morning was 0.2 (i.e. not zero!), so on its way back. Something like 2.0 might be considered a more normal value I’m told, so a little way to go yet, but I can really tell the difference. Was 0.5 this morning.
One of the nastiest consequences of the mucositis has been how difficult it’s been at times at night – staring at the clock wishing that sufficient time would elapse for me to be allowed at least one of the oral morphine or soluble paracetemol. Even swallowing water at times like that has been eye-wateringly painful. I’m glad it didn’t last long like that.