Hi Mandy
I was in the day unit on Friday too. I’m 41 days post transplant (day T+41), so I’m not all that far ahead of you.
I was diagnosed in mid October last year (that’s when I was told the bone marrow sample confirmed it was myeloma). After 4 cycles of CTDa and 4 cycles of Vel/Dex I had my transplant in early September.
The harvesting was a bit tedious. My wife came with me (she’s been brilliant) so I had someone to talk to, though one of the nurses also stayed with me most of the time, monitoring the machine. You are connected to the machine for hours so they draw the curtains for you to perform the inevitable calls of nature. After the harvesting is stopped you have to wait while the stem cells are couriered to the Royal London (if I recall correctly) to be counted, and wait to hear if enough cells have been harvested. Because of my age (69) the nurse chose to only harvest enough stem cells for one transplant, which only took one day, but it was a long day. In your case they will presumably aim to harvest enough for two transplants.
In the ward:
The day after admission I had a dual PICC line inserted and I was given the high dose Melphalan along with lengthy hydration infusions. Anti sickness meds were started. A couple of days later my stem cells were returned. This was done by one of the specialist care nurses. After thawing them – they arrived in liquid nitrogen – she pumped them in manually rather than using a gravity or pump infusion, she said this was to make sure that as many cells were returned as possible.
I was told the melphalan would affect the lining of my whole gastro-intestinal tract. I would get painful mucositis in my mouth, I would get diarrhoea, I might lose my appetite and I might get nausea and/or be sick. But I didn’t get any of these. I guess I was lucky. I religiously brushed my teeth (using an Oral B electric toothbrush) after each meal and before going to bed, followed by Caphosol mouthwash after each brushing. This may partly explain the absence of mucositis. The Caphosol information says it helps prevent and treat mucositis. Initially I was given a bottle of saline to use as a mouthwash, then I was given two packs of Caphosol on transplant day. I was also given Difflam oral rinse, which I used after waiting a suitable time (at least 15 minutes) to allow the Caphosol to work. Incidentally, I use Sensodyne Pronamel toothpaste, one of the few toothpastes available that do not contain SLS (sodium lauryl sulfate). I used to suffer from bouts of mouth ulcers before I switched to Pronamel (after reading about SLS), now I don’t. Avoiding SLS seems to be controversial, but using an SLS free toothpaste seems to benefit me.
After settling down, life consisted of getting through each day, which was mainly tedious. Each bed had a Freeview TV, which was free (unlike some hospitals that charge). Freeview has radio channels as well as TV channels. You could buy newspapers, snacks, sweets, drinks, etc from a couple of trolleys that were brought round daily by volunteers that run the hospital shop. I had a cellular iPad which I found invaluable (I haven’t got a smartphone). The 3G signal is good in the ward and in the day unit, but the local cell gets very busy around lunch time causing internet browsing to grind to a halt. One tip, if you take any chargers (phone, iPad and toothbrush in my case) I suggest you take a short mains extension lead too, e.g. a 1m or 2m 4 way extension, because the mains sockets are quite high up the wall – about shoulder height. You may also need a 2 pin adapter (if a charger has a 2 pin shaver-type plug).
Another tip. You need to keep your PICC line dry. Mine was inserted through the side of my right bicep (they put it in the arm you use most and I am right handed). The nurse who inserted it suggested a Bathguard waterproof sleeve. I looked online for devices to keep it dry and I liked the look of the LimbO elbow protector. My wife ordered a large one (M75) for me and it worked very well indeed on my arm, but anyone with even moderately large arm muscles will probably need to get one made to measure. It has wet suit-like material at each end with different size holes that your arm passes through. The smaller hole was quite tight on my forearm when the LimbO was high enough up my arm to cover the PICC area. It was good being able to shower without worrying about getting the PICC line wet.
I tried to keep myself active as much as possible. I also avoided lying on the bed for long periods during the day. I was in an open ward initially and I was able to stride up and down the central aisle. This may not be an option now, the ward was due to move shortly after I was discharged and I gather the new ward only has side rooms. Later I was put into a side room and I was limited to walking around the bed. But there were many benefits of being in a side room – own washroom, no lights out (about 10pm in the open ward), no disturbance from other TVs or worry about your TV disturbing others, etc.
I used a reporter’s notebook to keep a log/diary of my stay. Besides giving me something else to do I found it quite handy to be able to refer back to when things had happened. The nurses were happy to give me printouts of my blood test results, but if you prefer you could just keep track of the main ones (Hb, WBC, Plates, Neuts, and possibly creatinine) in your log.
Most of the other patients in the ward seemed to have leukaemia. I was aware of just one other myeloma patient.
Last but not least the nurses and doctors were all very pleasant, friendly and helpful.
How my bloods progressed:
My neutrophils collapsed on day T+6 and started recovering on day T+12 with the help of Zarzio. My platelets dropped steadily from day T+0 to next to nothing on day T+9 and recovered from about day T+20 onwards. You are discharged when your neutrophils are consistently above 0.5 and you feel ok. I was discharged on day T+17. I was neutropenic (neuts below 1.0) for some time after discharge but without daily blood tests I can’t say exactly how long.
Transport:
I’m not sure I could have carried bags for any distance when I was discharged, so my wife and stepson drove in to collect me. There’s no parking at Barts, but there is an underground City of London car park nearby. The charge is £2/hour which isn’t bad for a few hours and I was discharged on a Sunday so there was no congestion charge. When travelling in to the day unit we park at a Central Line car park and take the tube to St Pauls. My wife also did this when she travelled in to visit me. It’s far cheaper than travelling in by train (which we did once and it cost a small fortune). We got Oyster cards to reduce the tube fares. You can now (since Oct 1st) use a contactless credit or debit card instead of an Oyster card, the fares are the same, just make sure you use the same card on exit.
I’ve crammed a lot into this post, I hope I haven’t overdone it and I hope it’s not too disjointed. Anyway, this was my experience. I hope it gives you some idea of what to expect. Good luck.
Ian
iang.
