To keep myself up to date with news dealing with Myeloma I have set up google alerts for key words dealing with Myeloma. Imagine my surprise when on todays update I saw my own name. This is thanks to Myeloma Beacon
http://www.myelomabeacon.com/links/2010/09/28/my-life-with-myeloma/
The Myeloma Beacon has some great articles dealing with Myeloma and is a good site to follow for anyone wanting to find out more about the disease.
I just found this site with the perfect solution for people similar to me who have lost their hair through Chemo or just generally bald for any other reason.
http://www.knitty.com/ISSUEfall04/PATThallowig.html
I have passed this info on to Paula and if you ask her nicely she may even make you one for a small fee. What a great Christmas present they would make. I think they look much cooler than the general head scarves.
Would I wear one …. If there was one suitable for a man, probably, I’m daft like that. I do honestly think that they look trendy though, especially for young girls who have to deal with hair loss through chemo treatment.
What do you think, let me know?
I planned this picture a while ago, before going in for my transplant. click on the picture to view it at full size.
I realised I haven’t written anything for a few days, so here is an update from last Fridays appointment at the hospital.
I took some painkillers first thing in the morning, yes my arm is still hurting, and drove to Liverpool. Driving has been OK and I have been out a couple of times taking Charito to work to get used to it. My arm aches a little, but as long as I time it right with the pain killers, I can get away with it. Anyway … I got there at about 9am and waited to have my bloods taken and then went around to G-Clinic. Thankfully this time I only had to wait about an hour for the results to come back before going in to see the doctor.
As was in with him for what seemed about an hour, but was probably only half an hour. I had a good chat with him and went through lots of different things, but mainly about the pain I was still experiencing in my arm. He examined me and went through option for changes of medication. The septrin that I was put on the week before has now been taken off my list of things to take, as he thinks it may be affecting my bloods in some way. My neutrophiles have dropped, they went up to 3.2 but are now 1.6. He said it is usual for them to up and down, but just in case he would take me off them especially as I am ok taking the pentamidine, which I have been taking for months and my body is used too. Also got some new pain killers and different anti sickness.
I also needed to have that X-Ray that I didn’t have the week before as well as have the pentamidine while I was there. So after seeing the doctor I went on my travels around the hospital. First to the X-Ray department (another wait), while there I helped a woman get a glass of water from one of the many water boxes, scattered around the waiting area. As it was the same tap control on a box of wine, I was quite skilled in how to use them. The woman, whose name was Susan went on to tell me that she couldn’t use her hand properly as she had fallen over about seven weeks ago. When she showed her hand to me it was all twisted and swollen as if she had only just done it. Apparently when she did it they put it in a cast and that is how it set and now they are telling her that there is nothing wrong with her hand! She had argued with them that there was and that her hand didn’t even look normal and she couldn’t use it properly and insisted on getting it X-Rayed again. I don’t think I helped build her confidence up when I told her that it looked more like a foot than a hand! Oh well I hope she gets it sorted as I doubt I will see her again to find out.
After the X-Ray I had to make my way up to 10Z to have my Pentamidine and also to get one of the doctors to have a look at my X-Ray results which would be on the system for them to examine. Oh prior to that I dropped off my prescription at the chemist. While waiting for my Pentamidine there were a couple of people in the waiting area (broom cupboard) I didn’t know one of them, but the other person was a woman called Jennine. Jennine is the woman that was in the next room to me during my stay in hospital. Although I never met her during my stay, I knew of her and was aware how ill she was during her stay. It was good to meet her and know she was ok. I knew of a few times that the crash team were buzzed in the night and was thankful that I didn’t have to go through what she went through. I also found out that she had her stem cells from a donor, rather than her own, which is what I have had. Having stem cells from a donor is more difficult than having the autologous transplant, which is what I have had.
When I was on my own they locked me in the room as usual and I had my pentamidine, afterwards another nurse came in and told me that she had spoken to the doctor and my X-Ray was fine and wasn’t showing anything unusual. So now I have to wait until I have the MRI scan to see what that shows up.
I picked up my prescription on the way out and also bought a drink and a snack as I was shaking a little with not having anything to eat or drink all morning. By the time I got to the car in the car park I was absolutely shattered and sat there for a few minutes having my drink and snack, which consisted of a bueno bar. I was conscious that I couldn’t see there too long as I had already paid for the car park and I wasn’t sure what the time limit was from actually paying for your ticket to leaving the car park. Fortunately I was ok and got out without any trouble. Oh forgot, I took some more tablets before leaving the hospital as the previous ones had worn off. I was in more pain driving home than I was driving in, as the tablets hadn’t fully kicked in by the time I left.
Since then I have been resting and trying different times of taking my tablets and I seem to have found a routine that works. I can now manage to get at least 5 hours sleep each night if I time it right. I have even managed a whole night from 12am till 7:30am one night, which was great.
I have to mention again Chris and Jodie (next door) and thank them for helping me. Jodie has looked after my garden and cut the grass (again) and cut down all of the bushes in the front which now looks a lot more respectable and Chris has washed my car (again). I really appreciate having such good neighbours. Thanks :)
While I’m thanking people I should mention Pilar my sister in law who has been staying with us for the last 5 months (from Peru) she has been making sure that I have everything I need and been cleaning everywhere for me to make sure I don’t catch any germs as well as preparing my lunch and generally taking care of me when Charito hasn’t been here. Which has allowed Charito to relax when she gets home from her Jobs.
I woke up again at 4am this morning in pain again. I’m trying not to take too many paracetamol so I just took one dihydrocodeine it wasn’t as affective as taking both of them together, but I managed to get back to sleep. Up at 7am and took both lots of tablets as the pain was too much to bear.
One of the questions I asked last Friday at the clinic was - ‘how soon can I drive again’. I was a little surprised by the answer as I thought she was going to say about 4 weeks or more, but actually she told me that I could drive now if I felt safe to do so. Obviously if I felt sick or drowsy or couldn’t use the controls because of the pain then don’t do it. So today after waiting for the pain killers to kick in and the car sanitised I took Charito to work. Although felt a little strange at first, not driving for over a month, I managed ok.
If only this pain would go away, I would feel so much better. I have pain in my neck now as well, so it’s looking more like a trapped nerve. I felt better for a while today after I got home from taking Charito to work I had a really hot bath that seemed to ease it for a while. I’ve managed to go up till 4pm without any pain killers, which is good as previously I’ve been clock watching to see when I can take the next lot every 4 hours.
Every four hours.
8am = 2 paracetamol
12pm = total 4 paracetamol
4pm = total 6 paracetamol
8pm = total 8 paracetamol
12am = total 10 paracetamol
4am = total 12 paracetamol
All of the above times are plus a dihydrocodeine.
As the maximum dose in 24 hours should be 8 tablets, you can see why I try and miss a few of those out, although I am in pain when not taking them. Taking a bath and trying to get some sleep during the day seems to help get through a few hours, so I might start to do that on a daily basis until it eases off as it’s driving me mad!
I was picked up early Friday from home by the North Wales Ambulance Taxi to take me to the Royal Liverpool hospital. Arrived about 9:45 ish. I had to go up to 10z first before going to G-Clinic. 10z is on the the tenth floor and G-Clinic is on the Ground. I only had to wait about 30 minutes in 10z to get my bloods taken. I was waiting for with someone else called Robert who I had a good chat with. I was encouraged when he asked me how long ago it was since my transplant, when I told him and his wife, they were shocked and thought it was about three months ago. He said that he was much worse than I am when he came out and he was similar to me and didn’t have any infections or sore throat/mouth. So that made me feel a bit better.
I’ve still been in a lot of pain with my shoulder and explained that to the nurse at the hospital, but they can’t really do anything and I needed to discuss it with the doctor when I got to see them in G-Clinic later.
The nurse took my blood and then gave me the vials and paper work to take down with me to G-clinc. So off I went down in the lift again to G-clinic. registered in and handed over my bloods, which were promptly given to a nurse who took them straight over to the department to get the results. This process normally takes about an hour for the results to come back, so I went and sat down and started to twiddle my thumbs knowing that I was in for a wait.
Robert came down about 20 minutes later and I saw some other familiar faces, I managed to catch up with Marilyn, who if you remember was the person I had my extraction process with, she was also having her engraftment at the same time as me, although she went in a week earlier. She came into G-Clinic after me and was seen before me as well, so was Robert and goodness knows how many other people came and went and I was still waiting. I asked the nurses if my blood results were back yet, but they were still waiting. There was one point were the doctors couldn’t see anyone as the blood results weren’t back. The nurses were trying there best to chase up where they were, even going down to the department with a list of names that they were waiting for.
The time was ticking away. The ambulance taxi driver and already informed me that he had to go and do some other jobs and had text me to let me know that he would be picking me up at 1pm. Plenty of time I thought, but looking at the time it was creeping towards 12pm, keep in mind I hadn’t had anything to eat or drink all morning as well, not that I was feeling up to eating much anyway, I couldn’t eat my breakfast in the morning as I felt a bit sick.
So by this time my thumbs are quite sore from all of the twiddling that I was doing. If I had the energy to get angry I would have done by now as even the people that hadn’t had their bloods returns and lab chased up had been seen. I’d received a phone call from Tony the ambulance man saying that he would be with me in 5 minutes. Yes it was 1pm now! I told him I shouldn’t be too long now as my folder was the last one on the desk so I had to be going in soon. He was shocked that I hadn’t even been seen yet (not as much as me).
I finally got in to see Gillian, who is the registrar (a specialist doctor assisting the chief specialist) and I complained to her about the 3 hour wait. She apologised and agreed it was ridiculous and explained that the lab had misplaced my bloods and showed me a printout that she had been given. They don’t normally get a printout, so she knew something had gone amiss. I knew it wasn’t her fault though as I was aware of the nurses trying desperately to find the results for myself and the other patients. It’s just typical though that mine had to be the one they completely misplace!
Anyway my bloods are OK and I didn’t need to have any blood transfusions, which is good, as I’ve managed to avoid them up to now. I get on well with Gillian as I have seen her a number of time and she was the one who took my Hickman line out and stitched me up (literally) afterwards. She has a good sense of humour and will always try and find out what is causing the problems. She’s also the one who made me the soup while I was in hospital. She asked me about the pain in my arms. It’s got worse, it isn’t so much both my arms now, but my right arm is very painful. She examined me again and did the usual pushing and pulling test. She was concerned that I now have no feeling in the top of my right arm and she didn’t think it was anything to do with my myeloma or the transplant, but that I may have a trapped nerve. I had to do some test with moving my head up and down and left and right to see if that caused me any pain, which it didn’t. She is arranging for me to have an MRI scan as I haven’t had one before and it will show up any problems. The normal course of action it to have an x-ray prior to MRI, which she wanted me to have then, which would mean another wait. I told her the taxi was waiting, but I agreed that if it needs to be done then he will have to wait or arrange to collect me later.
I also went through a list of questions that I had, one of them being about the stitches being removed. She said she would do it, but she didn’t have the equipment with her so would I be able to go back up to 10z and ask someone there to do it. I also need some more tablets which she gave me a prescription for. I’m going to be trying the Septrin tablets again, if you remember these were the ones they thought were causing the rash and itchiness, but actually it was the allopurinol. If I start to come out in a rash I obviously need to stop taking them. Not sure if I need to keep up with the pentamidine now though if I am taking the Septrin tablets, I will need to ask that next time.
Anyway …. So I was supposed to have x-ray, get stitches removed, get a prescription made up at pharmacy and explain to the ambulance man that he would have to wait! Thankfully Gillian changed her mind about the x-ray. It is a formality she said as she would be asked why she has arranged an expensive MRI scan without having an x-ray first, but she said she would deal with that. So that made it easier for me.
So after getting my blood forms for next Friday and handing in my forms to the receptionist to arrange next appointment I went upstairs to the pharmacy. Bumped into Tony the ambulance taxi drive and explained that I wouldn’t be too long (I hoped) dropped off the prescription, went down the escalator again, jumped in the lift (ok walked slowly) back up to 10z, didn’t have to wait too long, about 10 minutes, but felt like 20. No problem with stitches coming out, stung a little with one of them, but only slightly. Then back down the lift, up the escalator, nipped into smiths to buy a drink, before I collapsed. Picked up the prescription and back down escalators to meet Tony outside in the Ambulance car park.
Phew at last on the way home. Drank my drink in the car and chatted to Tony. Found out that they are all voluntary and they just claim back their expenses for petrol and tunnel fees. They do it because they enjoy helping others and meeting people. How wonderful is that, it’s good to know that there are still some kind genuine people out there.
Got home and Pilar (sister in law) made me some soup and a coffee. I was definitely ready for that! Fell asleep on the sofa for a couple of hours as I was totally shattered. Had some tea and took some more pain killers before trying to go to bed.
I woke up at 3am in terrible pain again, the tablets had worn off. Went down stairs and took some more. Sat around for a about 15 minutes as I was in too much pain to do anything else. I felt a bit sick as well, not sure if that was because of the pain or just because of the treatment, as I felt sick in the morning with my breakfast. I needed the loo, so decided to go back up stairs. As I was feeling a bit sick, I decided to take up one of the grey cardboard bowls that I got from the hospital (I took two home with me in case I was sick in the car on the way home). No sooner had I sat down on the toilet as I started to throw up, quite a bit! Charito got up and made sure I was ok and after cleaning up and brushing my teeth, sat on the bed for another 15 minutes or so, decided to try and lie down again. I couldn’t take any more pain killers, as I wasn’t sure how much my body had absorbed from the last lot I took before throwing them back up.
Didn’t get much sleep and got up and had my shower at 7am, came down and took some more pain killers. At the moment I’m feeling OK and as long as the pain keeps away, I’m doing really well.
If it is a trapped nerve, I’m hoping it will move out soon, not sure when the MRI appointment will come through, but Gillian seems to think it will be after next week. Until then I will just have to keep taking pain killers and putting up with it.
Well Monday night was even worse for the pain in my shoulders. I took some pain killers before going to bed, but woke up in absolute agony at 1am with pains in my shoulders. I couldn’t lie down at all. I went down stairs and decided to call the hospital to see if I could take some other pain killers that I had that were prescribed in Chester. Unfortunately I couldn’t as they didn’t know what my blood counts are and they could affect me. So I couldn’t do anything more about the pain. I ended up sitting upright on the sofa and trying to get some sleep like that, as it was far too painful for me to lie down.
Tuesdays I had to be at Liverpool hospital in the afternoon so that they could check my bloods. They took my blood and said that I could wait around or they could call me later and I might have to go back in the same day if I needed anything e.g. platelets, blood etc. As I had to arrange to get a lift in, I used the hospital ambulance-taxi service, it would be impossible to go home and come back again, so I had to wait. It wasn’t too bad I arrived at the hospital at about 1:30pm and I was home by about 4:30pm. The results came back and everything is fine, didn’t need anything doing. I got a prescription off the doctor and she examined my shoulders, but couldn’t see anything wrong. It’s very strange as it doesn’t hurt at all during the day. I even tried lying down on a bed to see if it hurt, but it didn’t. I don’t normally have pain in my shoulders and I don’t have myeloma problems with them, nothing showing on previous x-rays. So we have no idea why they would be hurting.
Last night was OK I took the tablets prior to going to bed, just in case, not sure if I needed to or not, I managed to have a reasonable nights sleep, only having to get up once in the night. Although I was sweating a lot, to point where I had to change my top during the night as it was soaking wet. My temperature is ok though, so it just might be my body getting used to the bone marrow.
In general I’m feeling OK, still very tired, which I’m sure will last for a while yet. I’m eating OK, but can’t each too much. I tried a lamb soup today, but couldn’t touch that at all as it reminded me too much of the Lamb Moussaka incident at the hospital, I don’t think I will be able to face eating anything remotely smelling like that for a while.
Last night I decided to stay up a bit later to see if I could manage to get a good nights sleep, rather than wake up in the middle of the night. It was about 1am before I went to bed.
It worked to a point, but at 6am I woke up with terrible pains in my arms (what did you think the * meant!), well actually it was the top of my arms. I couldn’t make out if it was my muscles or my bones, as it was so painful. I couldn’t lie down so I sat on the side of my bed. Charito got me some more pain killers, but obviously they don’t work instantly, wish they did. After about 30 minutes it seemed to calm down a bit, so thought I would try lying down again… bad idea as that just made it worse again. So I sat on the bed again. The alarm went off for Charito for work at 6:45 and once she was ready and left for work I jumped in the shower, well more of a crawl and slow climb than a jump, but you get the idea. I felt better after the shower and once I had settled down in my chair downstairs with my breakfast and coffee I felt much better.
So I’m sure again if it is just my muscles aching because of the way I am sleeping or it is something to do with my new bone marrow working it’s way through my joints that is making it ache, either way I know it hurt.
I wonder what tonight will be like, I will just have to wait and see what it brings…
Well I was released from hospital yesterday, although later than I though it would be as I had to wait for pharmacy to deliver my medication for home, which didn’t arrive until about 6:30pm
It was really nice to be home again and to has some peace and quiet. The first time I went upstairs I had to crawl as I didn’t have the energy to walk up properly.
Sleeping in my own bed made such a difference. I woke up at 4am, had a drink of water and then managed to go back to sleep until 8am. Although I must have hurt my shoulder in my sleep as I am in a lot of pain at the moment. It feels as though I have crushed my muscle in my arm. I must have tried sleeping in my side for the first time in three weeks and with me being in such a deep sleep stayed like that, but obviously it hasn’t done my arm any good. I’ve taken some paracetamol, but they don’t seem to have done much.
I’m totally exhausted and just moving around the house wears me down. Hopefully over the next few days I will gradually get some energy back.
I didn’t get much sleep last night, as there was lot of activity during the night with other patients who were very ill. I had my breakfast at about 6:30am and tried to eat shepherds pie for lunch. What I didn’t think about though was what I had last night for dinner, which was the Lamb Moussaka, which immediately came back up again as soon as it went down. The shepherds pie was the exact same mix, just with mash on top. I managed to eat the pees and carrots though. The registrar came in and noticed I hadn’t eaten it and after going through some medical things asks if I wanted to try some soup instead. I decided on chicken as I hadn’t had that on. So I had the registrar make me lunch, which I’m told is bit of an honour. I huge bowl of chicken soup as well and I ate it all ….mmm very nice.
Later on she was back, but this time with the doctor and three other trainees, all in my small room. The doctor discussed my bloods and how well I am doing and said ….. wait for it, this is the good news……. We are going to send you home tomorrow.
So things have started happening to get me on my way. I’ve been given a going home pack and had a discussion about what I can and cant eat and do. I’ve been on the nebuliser to have some pentamidine, which for some reason didn’t taste as bad as it normally does when I have it. Tomorrow I will be having my blood taken again in the morning, just to make sure everything is ok and they will be giving me some more platelets before leaving. I also need to have my Hickman line removed. They are expecting me to release late afternoon.
I still have to be very careful not to catch anything so anyone who has any type of cold or disease or not washed for while etc wont be allowed into my home.
So don’t be offended if I ask you to sanitise your hands or wash them, I just can’t take the risk of catching anything and ending up back in hospital.
So hopefully providing nothing goes wrong between now and tomorrow afternoon, the next blog post will be from home.
See you there …..
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I thought I would put this list together of the things that I have done, both in preparation and during my autologous stem cell transplant to try and help me get through it with as little trouble as possible.
Obviously it is different for everyone, but as my engraftment has been successful, without any major issues, no sore throat, mouth ulcers or any infection; I’m hoping this list will help others have an easier journey during their transplant.
As I am male, I can only write this from a mans point of view.
In preparation:
During your stay:
I honestly don’t know if it was following the above that helped get me through this without all the major problems associated with stem cell transplants or it is just how it affected me. I would be very interested to hear of anyone that follows a similar regime to see if it is being strict that provided the benefits I have seen.
I would also like to thank my wife Charito (Maria) for supporting me everyday through this. Relentlessly making sure she gets in to see me. Having to take several busses and trains at times as well as fit in two jobs at the same time…. Thank you, you are my rock x (te amo mucho)
Well the results are in for today. 1.9 Yipppeee
| 3.9.2010 | 6.9.2010 | 7.9.2010 | 8.9.2010 | Target | |
| Neutrophils | 0.0 | 0.2 | 0.9 | 1.9 | between 1 and 2 before I can go home, nearer 2 the better |
| Platelets | 7 | 22 | 19 | 23 | Normal is between 150 – 400 but anything over 20 they don’t consider too much of problem as it will increase |
| Haemoglobin | 11.6 | 10.6 | 10.1 | 10.2 | They don’t seem to worry too much about this dropping slightly |
| White Cell Count | 0.0 | 0.7 | 1.5 | 2.5 |
They took more blood test yesterday prior to giving me the Growth Factor. They do this to make sure that they don’t give me too many and the bone marrow would start to get pushed back out through the bone again into the blood stream. Remember I said that they were expecting my neutrophils on Wednesday to be around the 0.5 mark, well I had the pleasant surprise of seeing that at 0.9. So today they had taken some more bloods and I expected it to already be about the 1 mark.
They are also talking about taking me off the ondansetron pump (which is the anti sickness) as well as possible removing the Hickman Line shortly as well.
I have had one other problem though, I’m not sure if I mentioned in my last post, but my temperatures was slightly high, well that’s gone down again so doesn’t look like the start of any infection.
I hadn’t been sleeping very well over the last few nights and just couldn’t get to sleep either during the day or night. So I asked for sleeping talblets. Last night they worked as I managed to get a good few hours sleep. The only problem is that I seem to have come out in a rash. Nothing to worry about though I can change the tablets or stop them all together.
I will post again later on with todays neutrophils results once I have them
| 3.9.2010 | 6.9.2010 | 07.9.2010 | Target | |
| Neutrophils | 0.0 | 0.2 | 0.9 | between 1 and 2 before I can go home, nearer 2 the better |
| Platelets | 7 | 22 | 19 | Normal is between 150 – 400 but anything over 20 they don’t consider too much of problem as it will increase |
| Haemoglobin | 11.6 | 10.6 | 10.1 | They don’t seem to worry too much about this dropping slightly |
| White Cell Count | 0.0 | 0.7 | 1.5 |
The last few nights I haven’t been able to get to sleep properly. I’ve managed to dose off during the day though (I think). I’ve been sleeping with the backrest slightly raised since I have been here. Last night though I thought I would try putting the back rest down and trying to sleep flat on the bed.
Bad idea ……
No sooner had I lay down on my back but I started to cough a little as I felt acid in my mouth. I sat up and tried to spit it out in a tissue. Coughed a little more, then threw up a bowl a bile. So after cleaning up I raised the bed again and tried to get to sleep. I managed a couple of hours again, but nothing like a proper sleep. I don’t think I will sleep properly until I am back home.
I got my blood counts back again yesterday and the good news is that my neutrophils are starting to increase.
| 3.9.2010 | 6.9.2010 | Target | |
| Neutrophils | 0.0 | 0.2 | between 1 and 2 before I can go home, nearer 2 the better |
| Platelets | 7 | 22 | Normal is between 150 – 400 but anything over 20 they don’t consider too much of problem as it will increase |
| Haemoglobin | 11.6 | 10.6 | They don’t seem to worry too much about this dropping slightly |
| White Cell Count | 0.0 | 0.7 |
The main one that I’m interesting rising is the Neutrophils. The rise is the expected amount at this stage and Wednesday they would expect to see it at about the 0.5 range.
In general though it is going well and I’m not counting the days down to coming home and to be able to fully recover and to finally get a good nights sleep.
Today has been another good day for me. I woke up about 3:30am, so had a few hours sleep, lay awake in bed with my eyes shut for a while, resting while I could. Decided to watch the x-factor at 5am on ITV iPlayer. The nurse asked at about 5:30 if I wanted anything, so I decided to have some toast and marmalade whilst watching the x-factor. I didn’t have any cereal at 8am which I tried to at least have a few mouthfuls because I had not long had the toast.
Lunch I ordered the Chicken and was told they hadn’t got any, so I ordered the sausage. Except when it arrived it ended up being the Chicken again. Again I managed to eat most of it along with the potatoes as well as some ice cream and jelly afterwards. I have to take my time eating as my stomach isn’t quite up to it properly, but it’s getting there.
Dinner I decided to try something new, the Corned Beef Hash. Maggie, the nurse, warned me though that it didn’t really resemble anything that looked like Corned Beef Hash! When it arrived, I knew exactly what she meant. It isn’t something you would want to look at if you was feeling a bit sick, lets put it that way. But me being me, I will try anything if it will help in my process of getting better, so I tucked in. Surprisingly it was very nice and I almost ate everything. Maggie asked if I would like some pudding, so I went for my usual of two lots of ice cream; however Maggie came back and said they have ran out of ice cream in the fridge (probably due to me eating so much of it). She suggested steamed jam pudding and custard. Now I’ve been caught out like this before, where my mind thinks … mmm that would be lovely, only to end up being sick once I had tasted it. Throwing caution to the wind again I said yes. It arrived, steaming hot custard, the smell so sweet. I took a tiny bit of custard with my spoon and thought, ‘is this really going to taste as nice as it smelt?’, and yes it did. The sponge, syrup and custard was very sweet, but I could taste it and it didn’t taste, which has made a change as everything becomes tasteless after the chemo. Again I couldn’t manage to eat it all but it was very nice.
I had to rest for quite a while after eating it as I didn’t want to disturb my stomach and throw it up. My stomach was making all sorts of noised and gowns and pains as I could feel it being digested with all of the other food during the day. My body trying it’s hardest to adjust to having food again.
By about 6:30pm my body told me you need to go to the toilet and it was right. It felt like I was there for about an hour, but it also felt like the best poo ever. It felt as though for the first time in weeks my body was actually doing what it was supposed to (at least to a point).
I’ve had a couple of hours sleep and rest and felt good.
I still have a runny nose a bit, but I think it might just be the air conditioning. They have taken swabs, but I wont get the results of that back till tomorrow.
I’ve also had my growth factor again today and tomorrow they will take blood tests again to see if it has started rising. I’d be very surprised if it hasn’t now.
22:00pm and just had some more toast and marmalade, one and half slices is all I could manage with a cup of tea. My weight has gone down again today, but will see what happens tomorrow. I have to keep telling myself that I need to eat and drink, without food and drink my body wont have the energy to recover. So although it has been difficult eating over the last few weeks, the bit by bit procedure I have adopted in my mind seems to be working.
From the looks of it I have manage to avoid all of the worse things that everyone else has experienced, at least so far. I’m obviously not out of the woods yet, but it is looking promising.
Over the next few days I will try and put blog post together that outlines the things I have done to try and make sure it goes as easy as possible for others who have to go through a similar thing. That’s once I know that I am OK and I’m working my way back up, it would be no good making suggestions until then.
I had a meeting with the dietician yesterday – we went through the list of food to eat and avoid whilst being Neutropenic. It was very informative and she was very helpful. Charito managed to meet her later on and alleviated any fears she may have had about cooking Peruvian foods.
I need to try and keep my weight, as now is definitely not the time to go on a diet. As I’m losing weight it is only my muscles that are disappearing and not fat. I don’t have much muscle anyway, so I can’t afford to lose any.
2200 calories I need to try and eat a day to maintain my current weight. Iv’e lost over 5Kg so far whilst here so I am eating as many fatty things as I can. Cheeses etc and I have Kandyshakes supplement drinks that I quite like so I’m trying to have at least one of those a day as well.
I have also been given a tin of power called Polycal. It looks like a tin of baby milk, with it’s own little baby scoop. Each scoop is 19kcals and I can add it to any hot or cold drink or any other meals that Charito wants to cook. It is tasteless and does nothing more but add calories. I have tried in coffee, Juices and water and it is fine.
So now I can get fat on as much water as I want, normally add two or three scoops to each drink.
As you know, my stomach hasn’t been good, the chemo and transplant, along with the other drugs, has its affect on the bowls. At the moment I discovered a skill I never new I had. How to be sick in a bowl whilst weeing into a jug at the same time as having diarrhoea.
Those of you that have been through this will understand what I mean, but the point is that it gradually gets better. The diarrhoea slows down, but you don’t know if you are going to have diarrhoea or not when your stomach hurts, you have to get to the loo as quickly as possible or take the risk of messing your PJ’s.
There comes a time though that you have to take the challenge, is this going to be just wind or am I going to have a nasty surprise. So after several successful attempts at going to the toilet just in case, you decide the next fart attach I will give it ago and risk it.
The tension builds ….. the pain rises and you just have to pass wind. You hold your breath tentatively, was that a successful operation, did the fart arrive safely. Your not sure, so you have to go to the loo to make sure anyway.
It’s surprising how something simple can make you so happy…. hooray I managed to fart. I’m not actually sure, but I might have given a little cheer!
After about another 20 attempts you begin to trust yourself a little more, but now and then there is one that your not quite sure of and still have to go and check.
I feel all grown up!
Thursday night at about 10:30, just after the nurse had been around for obs, I decided to go to the loo, before trying to settle down. My stomach wasn’t brilliant (as usual) so crawled back into bed. No sooner after lying down, I felt myself start to heat up!
Oh no! I’m starting to get a fever similar to the one I had early on in my treatment where I had what is called rigors. Your body shakes violently all night and is very painful. The only thing that they can do is try and cool you down as much as possible. I waited a while before buzzing the nurse to make sure that it wasn’t just some kind of hot flush…. it wasn’t!
I buzzed and the nurse came in and I said ‘It it really hot in here or have I got a tempertures’. Errrr no it’s really hot in here. Thank goodness for that, it wasn’t me. She explained that the air con sometimes blows out hot air, but it should adjust as it is all computerised. Computerised … mmm the answer and blame for everything. I waited about 15 minutes, but it was no good I was roasting. I buzzed again and said she would call the engineer, which she did. about 15 minutes went by and by now I am cooking. All of the nurses came to the door and realised there was something seriously wrong and tried to cool the room down for me with fans and leaving the door open to try and get some cool air in. They rang the engineer again and set it as a very high priority to get fixed. Don’t forget all of the trouble everyone has gone to to keep infections away, now I’m in a room heated to perfection for bacteria to grow.
The staff were trying there best and couldn’t do more for me. It was about midnight when the engineer came, I could hear him working outside in one of the cupboards (so I’m told). He managed to do a temporary fix where it would blow out cool air and wouldn’t be able to regulate it. No problem at least I will cool down. I tried climbing in the fridge naked, but that didn’t go down too well with the staff. At last cold air. I can breath again, few.
The temperature it was set at was cold. I was given extra blankets if it got too cold. Nothing could be worse than being slowly cooked so I said it wouldn’t be a problem ……. why did I say that, I don’t know.
It got colder and colder, to the point where I was trying to climb in the fridge. I also discovered that it is possible to make ice sculptures out of wee!
I couldn’t stand it anymore, wrapped up in my dressing gown in bed under three covers, I was freezing. …. time to buzz again. I can’t stand it anymore you are going to have to ring him and get him to change it again. The time was now about 3:30 am that he came again and adjusted it.
Guess what, this time it wasn’t cold it was hot again, not as hot as it was before, but certainly uncomfortably hot. Again fans on and I tried to get some rest, but never quite managed it.
The morning came (what time does morning start) and I was told the heating engineer would be here as soon as possible, he is awaiting for the part to arrive.
He arrived in the morning at some time, cant’ quite remember as I think I was a bit delirious at this point because of the heat exhaustion. He spent most of the day here but had it working, in that it wasn’t hot anymore, by about 12pm. So during the day I had this oily engineer walking in and out of my room taking bits off the wall and testing the temperature. He got told off by the nurses for not wearing he apron, naughty boy. After he went I wiped all the controls and the surfaces he touched with alcohol wipes. I’m sure he was a clean person, but the though of muck and oil in my room when I zero immune system didn’t thrill me.
There were going to move me to another room as soon as they moved another patient to another ward, but by the time that was organised I said I didn’t mind waiting the extra bit to save all the problems. I’ve settled in the room now and I didn’t want to have to get used to another one.
Today my nose is running, not sure why yet, I’m going to have some swabs taken later to get them sent off for analysis. Lets hope I’m not coming down with a temperature!
Well I’m still here, which is always good. I’m doing OK and not had anything really bad happen to me yet!
Rather than post everything in one blog post I will write a few, just to give you something to read.
First of all thanks to everyone who has sent me emails and texts, sorry I haven’t replied but been a little busy, normally being sick or on the loo.
At the moment my counts are zero and I have had two lots of Growth Factor. Monday I should see them start to creep back up again. Fingers crossed.
For those of you that understand the details currently my blood counts are:
| Type | My Counts | Normal Healthy Person |
| Haemoglobin | 11.6 | 13.0 – 16.7 |
| Platelets | 7 | 150-400 |
| White Cell Count | 0.0 | 3.5 – 11 |
| Neutrophils | 0.0 | 2.0 – 7.5 |
I won’t try explaining all the above, if your interested in what they mean, Google them. Basically though it means that my Neutrophils (part of white cells) are still zero and the growth factor injections will stimulate my new stem cells to rebuild my bone marrow and increase over the next few days.
The platelets as you may have noticed are way way way less than normal which means that my blood wont clot. My nose has been bleeding a bit (not much) and so I have had to have some platelets via a drip to increase my count. It’s a good job I don’t wet shave! I will also bruise very easily at the moment so I have asked Chartio not to hit me, just in case (he he).
I’ve managed to keep everything I’ve eaten today down, which I think is a first. Yesterday I had cauliflower cheese, which came back up as quick as it went down (not pleasant). This morning though I woke up a bit more refreshed after having a bit of sleep which I didn’t get the night before because of the the TEMPERATRURE PROBLEM, more on that in a another post. Anyway, this morning I woke up (again which is a good sign), but I was very hungry. I had to call the nurse at 6am to order some cheese and crackers, they couldn’t supply the selection I usual enjoy with a bottle of wine,so I had to settle for a few jacobs crackers with cheese triangles. It was just what I needed and I could taste them as well (sort of).
I had lasagne for lunch, which I also managed to keep down only a tiny portion and could only manage half, but at least its more food down me. Just had dinner of vege soup which took a while to eat but again so far, managed to keep down, so the its looking good for a whole day without vomit. …. did I speak too soon.
