I have just got back from seeing my consultant haematologist, who we hadn't seen since before I went into hospital. I had a blood test and he was happy with all the levels and with my general progress since having the transplant. He said that my itch was probably to do with the chemo still in my body and should just wait for it to go, tiredness was expected still. I am due to see him again in two months time.
The last couple of days in hospital were ok. Was obviously very itchy and tired, but apart from that, much was the same. On the Tuesday morning, very early, a whole team of doctors came to see me. The consultant, two or three registrars, a couple of juniors and two medical students. Never have I felt more intimidated in my entire life whilst I was sprawled out on the bed in my pyjamas. The consultant did all the talking and checks, whilst all the others just stared and took notes. He said that he was happy enough for me to go home in the next couple of days, which I was naturally delighted with, having been in hospital for over a week.
On the Wednesday I was allowed home. WOOOOOO. It was a bit of a shock to the system as I had been away now for exactly three weeks. I was shattered. I got home and went straight to bed. It was the day of Purim, so my sister and a good friend had organised a Megillah reading at our house for that evening which was lovely, although I fell asleep half way through. The next couple of days my routine hardly changed. I still wasn't eating at this point so was literally sleeping, watching telly and sleeping some more.
A couple of days later I had to go back to the hospital for a routine blood test and to see the chief transplant nurse. My blood levels were not good and had dropped quite considerably. They sent me back home with the same injections to boost the level of white blood cells and told me to come back next week to see if these had made a difference. They had and my levels went back to normal and the nurse called and said they weren't too concerned to call me back again and should wait until (today) when I was due to see the consultant again.
Thursday, 29 March 2012
Monday, 5 March 2012
Not your average Friday...
I hadn't felt great most of Friday morning. Very light headed and my blood pressure had been pretty low, as well as my temperature on the increase. I had been given an energy milkshake to compensate for lack of eating and to try and boost my energy. This resulting in most of it being thrown up, luckily caught in a bowl, but none the less... This was the first time I had thrown up or even felt nauseous since starting the transplant. Not a bad record. Eventhough I felt slightly better after having thrown up, I felt that the day wasn't going to end very well... And I was right.
From this, I had felt pretty rough for the rest of the day and spent the rest of the day in bed trying to sleep, which is really difficult when you can't stop scratching. I later got up to go to the toilet, came out feeling very light headed, my mum saw and ran over, shouting for my dad who caught me as I fainted. Next thing I know, I'm sat on the floor with my arm stretched over the doctor's leg, six to eight nurses running around trying to get me to come around. After a couple of minutes, I'm aware of what's going on, I had to wait on the floor for a few more minutes. They then moved me to the bed where I had to lay with my legs in the air to get the blood flowing back to my head and was hooked on to drips of fluids and a jelly like substance.
After coming back to slight normality, the doctor came me a full check over, put me on another platelet infusion had a look at my picc line and was not happy, She thought it looked infected and wanted it taken out straight away. There went picc line number two! The nurse removed it and it did look gross. She sent the end off for testing to check whether it was infected or not. Now that this has been removed, anuthing IV goes through a canular and they can take blood the normal way. This is not ideal, but the best they can do, and I'm not sure they want to fit a third line.
As for the rash, which is still quite dominant, they assumed it was an allergic reaction to anti-biotics (penicillin) and have subsequently taken me off it, but now they might think it is to do with the GCSF injections I have been having to top up stem cells (the same injections as before the stem cell harvest) but I had my last one of these today. We shall see what the result is. As well as this allergy, my skin has become very sensitive to the dressings used to cover up various wounds and has blistered around the areas the plasters once were. They're pretty minging, just have to wait for them to go on their own.
My hair and beard which had also started to grow back, are now falling out again. Going to need some more hats...
Right, I think that's it for the meantime! If there is anything I have forgotten, I shall add it to the next post! X
From this, I had felt pretty rough for the rest of the day and spent the rest of the day in bed trying to sleep, which is really difficult when you can't stop scratching. I later got up to go to the toilet, came out feeling very light headed, my mum saw and ran over, shouting for my dad who caught me as I fainted. Next thing I know, I'm sat on the floor with my arm stretched over the doctor's leg, six to eight nurses running around trying to get me to come around. After a couple of minutes, I'm aware of what's going on, I had to wait on the floor for a few more minutes. They then moved me to the bed where I had to lay with my legs in the air to get the blood flowing back to my head and was hooked on to drips of fluids and a jelly like substance.
After coming back to slight normality, the doctor came me a full check over, put me on another platelet infusion had a look at my picc line and was not happy, She thought it looked infected and wanted it taken out straight away. There went picc line number two! The nurse removed it and it did look gross. She sent the end off for testing to check whether it was infected or not. Now that this has been removed, anuthing IV goes through a canular and they can take blood the normal way. This is not ideal, but the best they can do, and I'm not sure they want to fit a third line.
As for the rash, which is still quite dominant, they assumed it was an allergic reaction to anti-biotics (penicillin) and have subsequently taken me off it, but now they might think it is to do with the GCSF injections I have been having to top up stem cells (the same injections as before the stem cell harvest) but I had my last one of these today. We shall see what the result is. As well as this allergy, my skin has become very sensitive to the dressings used to cover up various wounds and has blistered around the areas the plasters once were. They're pretty minging, just have to wait for them to go on their own.
My hair and beard which had also started to grow back, are now falling out again. Going to need some more hats...
Right, I think that's it for the meantime! If there is anything I have forgotten, I shall add it to the next post! X
Friday, 2 March 2012
Update
I have now been in hospital since Sunday and am completely neutropenic which means I have no white blood cells, so am very prone to infection and basically have no immune system. Since being admitted, I have completely lost my appetite (totally uncharacteristic I know!) and haven't eaten a meal in over a week. I pick at meals, but can rarely eat more than 2 or 3 mouthfulls. This is in addition to having a really sore mouth and being in a lot of pain when I swallow...
I have also come out in a rash all over my body, you'd think I'd be used to rashes by now, but this is like no other rash I have ever had. It is so itchy, red and hot. They have been giving me piriton and other anti-hitamines, but they don't really seem to be helping. Unfortunately. There is nothing worse than being constantly itchy! They do think that this rash is being caused by an anti-biotic I had been prescribed. They have since stopped the anti-biotic to see if this was the cause.
Since being here, I have also had to have 2 platelet transfusions, where they have been so low, that they have to give me more. They have also put me on drips for de-hydration (despite the fact that I have been drinking) but this causes low blood pressure. My hair and beard are also starting to fall out again :( but that was to be expected even though they had started to grow back. Will try and update again soon!
I have also come out in a rash all over my body, you'd think I'd be used to rashes by now, but this is like no other rash I have ever had. It is so itchy, red and hot. They have been giving me piriton and other anti-hitamines, but they don't really seem to be helping. Unfortunately. There is nothing worse than being constantly itchy! They do think that this rash is being caused by an anti-biotic I had been prescribed. They have since stopped the anti-biotic to see if this was the cause.
Since being here, I have also had to have 2 platelet transfusions, where they have been so low, that they have to give me more. They have also put me on drips for de-hydration (despite the fact that I have been drinking) but this causes low blood pressure. My hair and beard are also starting to fall out again :( but that was to be expected even though they had started to grow back. Will try and update again soon!
Sunday, 26 February 2012
Being admitted into hospital
The last couple of days I had been feeling ok other than tired. My mouth had started to feel sore, hurting when I yawned. I had been given a special mouthwash to counter-act this, not entirely sure it's working! My blood test were also coming back ok and hadn't started to drop until yesterday. Today I got classified as neutropenic, which means that my blood isn't producing any white blood cells and therefore means that I am particulary prone to catching infection and must be really careful.
I got admitted into hospital today. My blood levels were really low and I started to feel really exhausted and my stomach was hurting. I had gone to have my morning bloods and my blood pressure was low. They said to come back in the afternoon to double check. However, I got admitted before that. We went back to ambulatory care, got checked by the nurses and the doctor and they decided it be best for me to be admitted. They thought that my low blood pressure was due to being dehydrated, eventhough I have drunken loads due to my dry mouth. They hooked me up on to a drip of potassium something to re-hydrate me.
I got admitted into hospital today. My blood levels were really low and I started to feel really exhausted and my stomach was hurting. I had gone to have my morning bloods and my blood pressure was low. They said to come back in the afternoon to double check. However, I got admitted before that. We went back to ambulatory care, got checked by the nurses and the doctor and they decided it be best for me to be admitted. They thought that my low blood pressure was due to being dehydrated, eventhough I have drunken loads due to my dry mouth. They hooked me up on to a drip of potassium something to re-hydrate me.
Wednesday, 22 February 2012
Stem cells and sweetcorn
Today I received my stem cells back which were taken a few weeks ago. I had to be canulated due to the stem cells being quite thick and gloopy and wouldn't have flowed well down my picc line. The nurse got the canular in in one attempt! Albeit quite painful, but one attempt is better than four! Once I had been canulated, the stem cells arrived, in what can only be described as industrial looking bin (others have said dalek... I like both comparisons). They had been stored in liquid nitrogen and preservative which smelt like sweetcorn. I had my pre-meds which included piriton and anti-sickness. I also had a blood test and pressure test before they started.
The stem cells, which just appear like gloopy blood, had been seperated into five bags and all had to go in with saline to help them flow. The nurse had to stay with my at all times and thaw each bag of cells in a water bath before they could go in. Once melted, they were attached to the canular and allowed to flow. Because of their thickness, they sometimes needed extra help going through. At which point the nurse had to inject more saline to clear the blockage. This was more painful then the actual needle going in, as the saline was literally shoving the thick blood into my veins. Ouch :( This only had to be done twice though. Phew. We arrived at the hospital at 10.30am and left around 4.30. I had to wait around for an hour or so after they were finished to make sure I was ok and that my blood pressure had reduced from pushing the new cells in. It had reduced, although it had been raised earlier during the process.
The whole process was rather exhausting. It took a lot longer than we thought, because it had been seperated into five bags, when they only took one originally. I can't smell the sweetcorn at the moment but could smell it in the hospital. My dad is convinced I smell like sweetcorn. I find it hard to believe. If so, I hope the smell disappears soon!
What happens now is that I just have to wait! There is no more treatment as such. The chemo is finished and I now have my stem cells back. I still have to go to the hospital every day for blood tests, check ups and to be seen by the doctor, but until the point that I get too ill, I'm allowed to still stay in the hotel and do normal things. They say that it takes a couple of days for me to get ill from receiving the stem cells. So now, all I can do is wait!
The stem cells, which just appear like gloopy blood, had been seperated into five bags and all had to go in with saline to help them flow. The nurse had to stay with my at all times and thaw each bag of cells in a water bath before they could go in. Once melted, they were attached to the canular and allowed to flow. Because of their thickness, they sometimes needed extra help going through. At which point the nurse had to inject more saline to clear the blockage. This was more painful then the actual needle going in, as the saline was literally shoving the thick blood into my veins. Ouch :( This only had to be done twice though. Phew. We arrived at the hospital at 10.30am and left around 4.30. I had to wait around for an hour or so after they were finished to make sure I was ok and that my blood pressure had reduced from pushing the new cells in. It had reduced, although it had been raised earlier during the process.
The whole process was rather exhausting. It took a lot longer than we thought, because it had been seperated into five bags, when they only took one originally. I can't smell the sweetcorn at the moment but could smell it in the hospital. My dad is convinced I smell like sweetcorn. I find it hard to believe. If so, I hope the smell disappears soon!
What happens now is that I just have to wait! There is no more treatment as such. The chemo is finished and I now have my stem cells back. I still have to go to the hospital every day for blood tests, check ups and to be seen by the doctor, but until the point that I get too ill, I'm allowed to still stay in the hotel and do normal things. They say that it takes a couple of days for me to get ill from receiving the stem cells. So now, all I can do is wait!
Tuesday, 21 February 2012
End of chemo, stem cells back
I have now finished the chemotherapy part of my transplant. My fanny pack of fun was also removed today woooooop! I have now come up in a rash all over my arms, legs and chest, but the nurses and doctors think that it's due to the chemotherapy drugs I have been taking and have prescribed piriton. So far each day I have been given the same drug, apart from today where I was given a different one. This was infused in half an hour, rather than over two hours. I also got to have an ice-lolly with my chemo (win! It was very tastey) because this drug is meant to make your mouth sore and nurses have a theory that if your're eating something cold whilst it's being infused, it helps. We shall see, either way, I got an ice-lolly out of it :)
Tomorrow I am due to get my stem cells back. They have been frozen and so will be thawed whilst I get them back. We were told the preservative that they are frozen in smells like sweet corn... Hopefully I won't come away tomorrow smelling of corn, but could be worse I guess! After I receive the stem cells back, which they need to canulate me for as they don't go through the line well, I don't receive anymore treatment, but still need to go in every day for observations and blood tests to monitor the levels in the blood. We then have to wait until I get too ill, that I will need to be admitted as an inpatient. My blood levels at this point will also be very low and I will be neutopenic (low number of neutrophils). They said this could take a couple of days, from when I receive the stem cells back, so probably around Friday or Saturday.
Other than the itchy rash and feeling very tired, I am feeling ok. For now... Will try and update again soon.
X
Tomorrow I am due to get my stem cells back. They have been frozen and so will be thawed whilst I get them back. We were told the preservative that they are frozen in smells like sweet corn... Hopefully I won't come away tomorrow smelling of corn, but could be worse I guess! After I receive the stem cells back, which they need to canulate me for as they don't go through the line well, I don't receive anymore treatment, but still need to go in every day for observations and blood tests to monitor the levels in the blood. We then have to wait until I get too ill, that I will need to be admitted as an inpatient. My blood levels at this point will also be very low and I will be neutopenic (low number of neutrophils). They said this could take a couple of days, from when I receive the stem cells back, so probably around Friday or Saturday.
Other than the itchy rash and feeling very tired, I am feeling ok. For now... Will try and update again soon.
X
Saturday, 18 February 2012
More chemo and treatment
I have now had three days of chemo as part of my transplant. The first day was pills and yesterday and today were all intravenously through my line. They take blood before each session starts and they chemo drips in from two bags over two hours. Yesterday the chemo went well and I felt fine They also hooked me up to a sexy bum bag with chemo in it which drips in over 24 hrs. Today I had my treatment and felt horrendous. I got home from the hospital and completely flaked out. I could hardly keep my eyes open and spent the rest of the afternoon in bed. I felt a bit sick, but not that I was going to be sick... (if that makes any sense...). I didn't even have any lunch! And for me to miss a meal, something is definitely wrong! I'm feeling much better now typing this. Still a bit tired, but not feeling ill.
More to come over the week x
More to come over the week x
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