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Ali 12 years, 6 months ago.
Well, I am now in room 6 ward 9 at the Musgrove Park Hospital Taunton. It is an Isolation ward. I have everything I could want from TV, Internet connection (poor signal I might get a dongle), tea and toast making facility etc… The toilet/shower is on suite (toilet 3 yards away – does that count for the Olympics Dai or is it too close.
Today is admin day they fit my central line tomorrow:-) . Happiness gauge 10
Kindest regards
David
DAY 1
I have just seen the pharmacist and he has given me a new mouthwash, I am the guinea pig on its use at this hospital. It is called muGARD. Apparently you rinse your mouth 4 times a day and swallow it. You start the day before Melphalan. It is supposed to virtually stop sore mouths and throats. I will let you know how I get on.
Good night all. Happiness gauge 10
DAY 2
I had a canella fitted first thing this morning for bloods and this afternoon I had a Central Line fitted in my chest they then removed the canella which became redundant. No pain in fitting the Central Line but slight discomfort when the atheistic wore off. They have warned me that they are going to start pumping in fluids and taking IN and OUT fluid measurements, which will mean a lot of peeing and disturbed sleep I should think. I have lots more pills and another mouthwash I have to use before the muGARD. I have decided to add a happiness gauge 0 to 10, 0 = real bad, 10= normal happy person. Today it is 10 Chemo tomorrow!
Day 3.
Happiness level – 10. From 9:00a.m I have been on aggressive fluids ? this involves turning up my water drip to max and pumping me full of water at the same time giving me a diuretic that will make me pee like mad, the object being to make me pee a measured amount of water (into bottles) every hour before they give me the Melphalan (chemo). The principle is to get the Melphalan out of my system as quickly as possible. I had the Melphalan about midday. I am informed that my bloods will hit the deck in about three or four days when all the problems will start. good night
Day 4
Happiness level 10. No action today it is a waiting day for my Stem Cells tomorrow, Friday. Had a lousy night?s sleep last night I think it was the 4 mil of Steroids they have put me on. Blood pressure has been raised ever since I came in 169/94 average. I am going to get yet another pill to control it. I have also been given another mouth wash this one is to control Fungus, I have to smear my tongue with it – 3 now; muGARD, Nystatin and Chlorhexidine Gluconate. Good night.
Day 5
Happiness level still 10. I am posting this early having just had my Stem Cells. It took 2 hours ? 6 bags, 2,000,000 of them. I have been told I will feel tired and maybe a little disorientated later tonight or tomorrow morning but I will let you know. I insisted on listening to my music whilst they came home and the first tune I picked was the Airborne Forces march by Wagner ?The ride of the Valkyries? if you listen to it you will understand why! Google it you can get a free listen on YouTube he he. I then played them some classical to sooth them down a bit, Bee Gees, Status Quo, The Who, Cher, Elvis (they just had to have some Elvis), good old Cliff and a few others. If you do not know the last two ask your Dad or Dai! Good night and may your God go with you.
DAY 6
A very quiet day, happiness level still at 10. I did not feel disorientated or sleepy. My neutrophils were still at 11 this morning but the consultant has said that when they go down it is normally fast and he expects me to start the ?final phase? tomorrow! Good night all
Day 7
Happiness level took a hit this morning, got to be honest and mark me down to 8. I slept very soundly, in fact the nurse had difficulty waking me ? and I am a light sleeper. But I woke as if my stomach had had a night and half on the Guinness (It was certainly a never again moment!). The Consultant said that it was the Melphalan acting. A couple of sickness tablets and the wife?s visit soon put me back on course. I have been voted the most boring patient on the ward by the Consultants and Nurses – it is their little joke because nothing is happening at the moment! They are a good bunch here, I feel like a friend not a patient.
Day 8 & 9.
Nothing really to report yesterday, another waiting day. I was sick this morning but I think that may have been the thought of doing the mouth washes ? God I hate them, but then I reminded myself of mouth ulcers and they do not seem so bad. My Neutrophils have reach 0.7 ? below 0.5 is apparently neutropenic and the Ward Doctor has just told me that for the next two days, as least, I may be real bad and not to plan any ward parties!!! This would be difficult anyway because they put me into Lock Down, only visitors vetted by the Staff Nurse can come in dressed in a protective apron! As Dai says I may not make a post the next few days ? but rest assured ?I shall Return?.
Day 10 & 11.
I do not want to count my chickens before they are hatched but I seem to be holding up well. They are expecting my temperature to go up but so far the highest it has reached is 37.1 Observations, blood pressure etc… are now being done every 4 hours. Happiness down to 6 is fair I think (no point in trying to be a hero you have all been here before me!!!) The general level of sickness is under control and bowels are fine at the moment. I have a general feeling of weakness, coupled with a slight shortness of breath if I move around too much in my room. My mouth feels like I have a plastic Mack in there, the Nurses tell me it is all the mouth preparations I am using leaving a coating in my mouth. I have a mild sore throat when I swallow otherwise no ulcers or other soreness. I just cannot face a cooked meal. I eat cornflakes and a slice of toast in the morning. Lunch now comprises of a body building Strawberry milk shake with Red Jelly, sliced banana and Ice cream ? really recommend this not only is good on the throat it taste great!
Day 12
Happiness level down to 5. I should have said I went Neutropenic on day 10 opps, sorry. My sore throat got real bad last night and is still very rough. I ate my cereal this morning but only after I allowed it to soak until it was like Paper Mache and then it was still difficult to get down. I have added another supplement drink to my menu. This time it is Complan Banana with Ice Cream, Orange Jelly and a Satsuma added in. I deliberately put on an extra stone in weight before I came in to give me a fat residue. I have lost about 5 lbs so far so still some of my reserves to get rid off before I get concerned about weight lose. The water in the hospital tastes foul, it is just not me the staff say the same. My wife has brought in some Barley Water to mix with it which helps. However I pointed out to my Consultant that I was not able to drink lots of water and she put me on a drip for the night to ensure I did not become dehydrated. I am having platelets today. Onwards and upwards as Tom would say.
Days 13 & 14
I have not posted on previous days because there is nothing really to report. I feel good with minor hiccups if you understand what I am trying to say. I had a temperature 38.9 yesterday and started some antibiotics. I still have my sore throat but I am on a Morphine driver and that helps a great deal. I can at least get milk and water down my throat without too much pain. Happiness level is 6
Day 15 & 16
Once again I have not posted because there is little to post Happiness level 7. They have upped the strength of my morphine – for the sore throat and I am now pain free. Yet another high temperature last night of 39.c. The nurse has bet me they will take out the Central Line and change the antibiotics so we will wait and see. My Neutrophils started to build yesterday 0.124 today 0.33 at this rate I could be home for the weekend, however, I think I will count my chickens when they are hatched! By for now
Day 17 & 18. My Neutrophils doubled again I am now non neutropenic. However the last two days I was just too sick to post; Taking out the central line from my chest released load viruses into my blood stream. To say I felt bad since that time would be an understatement. The last I heard of my temperature was that it was 38.4 and climbing. They seem to have gotten rid of most of the bugs but are still having difficulty with one nasty little cretin, this has held my temp up above 37.5 for the last two days. It has been a tough two days but not all doom and gloom. I have been steadily losing my hair and one of the nurses kindly brought her ?barbers kit ?in (she is and ex hair dresser) and cut the rest of it off ? wonderful. The other great thing in my two days was the shower. After spending a night alternating between sweating and cold shiver just to stand under a hot shower and let it all wash away was indeed magical. My happiness guide for the last two days varied between 0 and a hard won 3. But, I have been for a small walk this morning (ward door and back 25 yrds) and eaten most of my cornflakes and toast so I am moving onto a 4 I think.
last 3 days
This I think will be my last musing from Ward 9, baring another ambush! I feal weak, which is only natural and I still have no appetite, just the thought of solid food makes me want to urge, I struggle with a bowl of cornflakes in the morning. They intend to stop all antibiotics today, Tuesday, and I have to survive until Thursday morning. If that is good and my bloods remain up then it is ?Tie a Yellow Ribbon ……..?. I would like to put on record my thanks to two great groups of people that my Myeloma journey has brought me into contact with, The staff, from Cleaners to Consultants, at Ward 9 and last but by no means least the friends on this site who have supported, cajoled and made me smile when I have least felt like it. Neutrophils 0.886 Happiness level 9. Thanks. David Marriott.
Hi David good to hear you are settled in sounds like 5 star accomodation !! I love the idea of tea and toast facility!! I used a dongle when I was last in , not bad but couldnt always get a sgnal Are you on bt broadband at home ? I have just signed up for the free hotspots thingy which lets you use other bt users access , no extra charge just the same as using it at home You can look up the nearest hotspots on a map I think its called bt infinity Good luck for tomorrow and hope you get a god nights sleep love Bridget x
Hi Bridget, I forgot to mention the fridge 😉 .
Yes, the signal in the ward is poor but workable. I am on Talktalk at home but the hosptial is a BT hub.
I can send to the site but for some reason I cannot send emails. I can receive. I am using windows live mail. I think it might be something to do with firewalls, ether mine or the hospitals! If it persists I might try a dongle.
Kindest regards
David
Hi David,
Might be able to help you there. I used to be on talktalk and had the same problems. I think it is something to do with that your account is with talktalk to send emails, and since you can't get the internet access via them, you are unable to send emails. I don't quite get why you can receive them but I had the same thing!!! I never did work out if there was a workaround but I don't think so.
If the hospital was talktalk, you might find it still worked 🙁
Debs x
Hi David
Your five star accommodation sounds just like the one Peter would have had if they had not sent him home after 3 days!!!! to do his isolation. It was a lovely room with en suite tv, even a games console in the drawer. Plus his own fridge.
The day has arrived and all the waiting is over. bit like waiting to get married !!!!! It will be over before you know it.
All the best to you and hope it is a non event from the point of view don't have any setbacks.
Your appetite should be just right by Christmas. Good Luck
Min
Actually Min, I think they have put me in the Private ward by mistake!:-S Breakfast was served on a tray with matching china. No tea urn for me my own matching pot of tea and milk jug. One of the maintenance guys has just been in to take samples of the water from my shower etc… I just hope they are not going to bill me for all this. 😀 😀
Hi Deb, You are right you can only use your Outgoing mail (SMTP) Server: smtp.talktalk.net when connected over a talktalk line. I need to alter my settings to the hospital BT hub. Now the problem is trying to find someone who knows the information I need:-(
kindest regards
David
Hi David,
I just want to say I wish you well for your SCT. I had mine June 2009 and I was a 'guinea pig' for a new mouthwash, sorry I can't remember the name of it now but I don't think it was the same as yours. It was brilliant, I didn't get any soreness or ulcers whatsoever, I hope you have the same results with yours. Your hossy room sounds wonderful, mine was similar here in France. Good luck with it all, am thinking of you.
love n hugs Lorraine x
Hi David I am now a lovely shade of green ___ matching china !!!!I am sure its not a mistake they obviously know class when they see it love Bridget x
Hi David – yes it sounds very up market but just as you deserve. You will soon be reeking of sweet corn once you get your stem cells back. It's sickly sweet but thankfully you won't smell it – but everybody else will!
Good luck and I look forward to further musings from Ward 9 – to be continued …………….
Love, Gaye
Hi David just wanted to wish you well,your room sounds great,i'm in next month for my transplant. Hope everything goes really well for you and hopefully you could be home in time for christmas,best wishes Shirls x x:)
Yes I will be following your treatment with great interest. The very best of luck.
kindest regards
David
Day 4 for all my readers is above:-D
Your room sounds wonderful! Much better than mine, I'm jealous! It's sweetcorn day today, you are doing really well and have the necessary positive attitude. Thinking of you.
ps Sorry I haven't been in touch before but I have only just worked out this site!
Vicky
Good to hear from you again Vicky and welcome to the site.
David, I am really impressed with your happiness levels – I wonder how they will perform as time goes on! Yes you are a positive person and I know it is a must when dealing with myeloma and all that it throws at us.
You are probably in hospital at the right time to escape the snow and bitter cold – anybody out in myeloma land snowed in yet?
Keep the good work up David.
Love, Gaye x:-)
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