Well, 11 days after being discharged, and I'm back in hospital! It's quite a long story as to why, so please bare with me, and make yourself comfortable.
It's been a difficult start to this second stage of treatment to say the least, so you will have to forgive me for the delay in the blog. On Monday 20th July I officially started treatment as an outpatient and it was my first visit to the day centre. I have to say, the day centre is much better than I thought it would be - everyone was very relaxed and friendly. However, I was there for much longer on Monday than I would have liked. The treatment was supposed to last 4 hours, so we were told to arrive for 9am. But despite the fact that I arrived at 9am, my chemo didn't make an appearance till after midday, so I ended up being stuck in hospital till 5.30pm - they even had to chuck me out of the day centre and move me to a different floor so that the nurses could go home. The chemo they gave me has some weird side-effects too. Do you know when you jump into a swimming pool you sometimes get this horrible feeling that chlorine has gone up your nose? I felt like that for a good hour whilst having treatment. Weirdest side-effect ever.
Tuesday meant that it was time for the dreaded lumber puncture. I began the day down in the day centre having more chemotherapy - luckily this one only lasts 10 minutes. I then had to head up to the ward. People can usually have their lumber punctures done down in the day centre, but I absolutely insist on being given sedation, meaning that they have to do it in the ward. I really don't understand how anyone can have it done without sedation to be honest, they are better people than I will ever be. Once again my lumber puncture was problematic as they could not find the right part of my spine. This seems to happen every single time, so I'm starting to wonder if my spine is actually normal. However, luckily, they did heavily sedate me, so despite it being problematic, I wasn't really aware of what was going on and managed to survive unscathed.
Wednesday onwards was much better, as I simply had a short 10 minute treatment in the morning and was back home by 11am. The chemotherapy treatment does make me extremely tired though, so usually I have been back home at 11am and...straight to bed!
However, by this Monday I was feeling very weak and faint, so we needed to go into the day centre so that I could get a blood transfusion. It took till 4pm for the blood to arrive, by which point I was feeling very ropy, and because the blood had arrived so late, they needed to move me up to the ward as it would take 4 hours to complete the transfusion. So, I headed up to the ward, thinking that once that blood transfusion had finished I would be able to head home again. No such luck. When my blood results came back, we also received my CRP results. CRP are a protein in the blood, and the higher the levels, the higher the levels of inflammation - which leads to infection. A 'normal' person usually has levels of about 10, and an infected person would have levels of about 200-300. When you have leukemia, your CRP levels are higher than normal, but in this particular test, my levels were raised to 70, which is even higher than you would normally expect in someone with my condition. This meant that the doctors all suddenly panicked because I might have an infection and I got readmitted into hospital.
On top of my faintness, I have also been feeling some pain in my lower stomach, which led the doctors to believe that it might be a bowel or bladder infection. So, since being readmitted, I have had various types of scans to see if they can find anything. First I had an ultrasound scan (which was very painful as the woman kept pressing directly on the area that hurts), followed by an X-Ray and then a CT Scan. The ultrasound and X-Ray did not show anything, but the CT Scan did provide some answers - the pain from my stomach seems to be from an inflammation in my small intestine. However, the CT Scan also showed us something that we weren't actually looking for - I have two blood clots, one in my leg and the other in my lung. As you can imagine, this was a bit of a shock, especially as I had not been having any symptoms that suggested blood clots. On the plus side though, it is something that is commonly seen in leukemia patients, and to treat it they simply have to give me an injection into my tummy every day for 6-12 weeks that will help thin the blood and get rid of the clotting. Annoyingly, I have now started to have some symptoms, as today I started getting chest pain, but I'm managing to control this with pain relief - thank the Lord for morphine! It is a beautiful thing.
In terms of the inflammation in the intestine, the doctors need to treat that with antibiotics whilst I am still in hospital. So, it looks like I will have to stay here for at least a few more days. I'm missing home like crazy (especially now I don't have constant access to a fridge and can't watch TV past midday), but in a way I feel very lucky that they have found the cause of the problem so early - now they will be able to treat everything before it gets any worse.
Ok, so my body seems to be struggling a little bit this week! But I promise that everything will be alright in the end, and hopefully I will be back home before we know it.
Thursday, July 30, 2015
Thursday, July 16, 2015
Home Time!
On Tuesday I received the last bone marrow and lumber puncture of this part of my treatment. I was given plenty of sedation again (thank goodness), but it still wasn't very comfortable. At one point I had horrible pins and needles down my leg, which I have to admit was very sore. Unfortunately, I will have to receive a lumber puncture every Tuesday as the next part of my treatment, so I guess I will have to get used to them. I just need to remember how important they are - the lumber puncture ensures that no Leukemia cells reach my brain - so, it may be painful, but all in a good cause.
However, after the horrible treatment, I was given the fantastic news that I could go home! After the sedation had worn off they were going to sign my discharge letter, give me my medication and send me on my way to live my life as an outpatient!
...This was much too easy of course. Something had to go wrong. And of course it did. Mum and Sam packed everything into the car to go home, but then... my medication went missing. The pharmacist had only provided us with half my medication, so no home for me.
Luckily I only had to survive one more night. It took until 3pm yesterday, but finally they sorted out all my medication and set me free! I have now officially been discharged! The good news continued as I was also told that the bone marrow results were very good - so treatment seems to be working well as we move on to the next stage.
This means that I will be going into the second part of my treatment known as Phase 2 Induction. Even though I will be living at home the treatment will be fairly intense, with me travelling into hospital to receive chemotherapy every day, with the exception of weekends. This will be with new chemotherapy drugs that I haven't had before. Being in the day clinic will be a little strange too - I'm used to receiving chemo in my own room, so the idea of lots of other cancer patients getting chemo at the same time seems a little weird. I am feeling very nervous about it.
But despite my nerves, I feel extremely happy. I am so grateful and relieved that treatment has gone well so far, and I have every confidence that this will continue into the next stage, because I know that I can beat this. Plus, being at home is amazing. I now get to be constantly around the people that I love (and constantly have access to the fridge - the most important thing). So, really, I'm over the moon right now.
However, after the horrible treatment, I was given the fantastic news that I could go home! After the sedation had worn off they were going to sign my discharge letter, give me my medication and send me on my way to live my life as an outpatient!
...This was much too easy of course. Something had to go wrong. And of course it did. Mum and Sam packed everything into the car to go home, but then... my medication went missing. The pharmacist had only provided us with half my medication, so no home for me.
Luckily I only had to survive one more night. It took until 3pm yesterday, but finally they sorted out all my medication and set me free! I have now officially been discharged! The good news continued as I was also told that the bone marrow results were very good - so treatment seems to be working well as we move on to the next stage.
This means that I will be going into the second part of my treatment known as Phase 2 Induction. Even though I will be living at home the treatment will be fairly intense, with me travelling into hospital to receive chemotherapy every day, with the exception of weekends. This will be with new chemotherapy drugs that I haven't had before. Being in the day clinic will be a little strange too - I'm used to receiving chemo in my own room, so the idea of lots of other cancer patients getting chemo at the same time seems a little weird. I am feeling very nervous about it.
But despite my nerves, I feel extremely happy. I am so grateful and relieved that treatment has gone well so far, and I have every confidence that this will continue into the next stage, because I know that I can beat this. Plus, being at home is amazing. I now get to be constantly around the people that I love (and constantly have access to the fridge - the most important thing). So, really, I'm over the moon right now.
Friday, July 10, 2015
Day 25
So, remember when I was pathetically moaning about my bum being sore? Turns out that this moaning was actually for a genuine reason.
On Tuesday afternoon I was taken for an MRI scan to check out if there were any major problems. MRI scans are really strange by the way. I thought that all you would have to do is roll into the machine and lay still - and, whilst this is true - no-one prepares you for the horrendous noise of the machine. I had ear plugs in and was listening to music, but it still sounded like gunfire from above and drilling from below. Terrifying machines!
Anyway, I received the results from the MRI yesterday and it turns out that I do actually have a hip problem. Basically, the steroids that I have been taking are restricting the blood supply into my hip, and that is what is causing my discomfort. As my steroids are such an important part of my treatment it's crucial that I keep on taking them for the time being, but I do need to be careful with movement. The general consensus is that I can wander around the ward a little, but not much further, so my parents and Sam will have to wheel me down to the cafe so I can get my munchies (Yes, I am still starving all the time).
In other news, the hair is gone. Completely! Over the past few days it has been falling out progressively, but I made the decision today to get the rest shaved off - so you can now all say hello to my beautiful, bald head.
In terms of wigs, I made the decision to go for one brave and one normal choice. So, I was a daredevil and chose the red wig from the fake wigs, and I'm also being fitted for a mid-length, brunette, real hair wig from the Princess Trust next week, something a lot closer to my original hair. Thanks for all the votes and suggestions! I hope you like my final choice.
On Tuesday afternoon I was taken for an MRI scan to check out if there were any major problems. MRI scans are really strange by the way. I thought that all you would have to do is roll into the machine and lay still - and, whilst this is true - no-one prepares you for the horrendous noise of the machine. I had ear plugs in and was listening to music, but it still sounded like gunfire from above and drilling from below. Terrifying machines!
Anyway, I received the results from the MRI yesterday and it turns out that I do actually have a hip problem. Basically, the steroids that I have been taking are restricting the blood supply into my hip, and that is what is causing my discomfort. As my steroids are such an important part of my treatment it's crucial that I keep on taking them for the time being, but I do need to be careful with movement. The general consensus is that I can wander around the ward a little, but not much further, so my parents and Sam will have to wheel me down to the cafe so I can get my munchies (Yes, I am still starving all the time).
In other news, the hair is gone. Completely! Over the past few days it has been falling out progressively, but I made the decision today to get the rest shaved off - so you can now all say hello to my beautiful, bald head.
In terms of wigs, I made the decision to go for one brave and one normal choice. So, I was a daredevil and chose the red wig from the fake wigs, and I'm also being fitted for a mid-length, brunette, real hair wig from the Princess Trust next week, something a lot closer to my original hair. Thanks for all the votes and suggestions! I hope you like my final choice.
Monday, July 6, 2015
Thank you Cineworld and Marrow Aberdeen!
A totally amazing thing happened yesterday. Cineworld Queens Links, with the help of Marrow Aberdeen, opened their doors between 12noon and 5pm to hold an event raising awareness for bone marrow donation.
But not only did a few people wander in and sign up as bone marrow donors - an incredible 52 people ventured down to the beach to sign up. 52 people! I was genuinely blown off my feet when I heard it was that many! The fact that all those people took the time out of their day to sign up is truly amazing, and I wish that I could go around and thank each of you 52 wonderful people individually. By just signing up you have given me the possibility of life, and I will never be able to thank anyone enough for that.
As well as those 52 amazing prospective donors, I am so grateful to all those at Cineworld and Marrow Aberdeen for making the clinic a possibility. It was your hard work and support for me that made the event successful, and I am so grateful. Like I said in my card - I promise to buy you all a drink when I've beaten this thing!
Unfortunately I obviously couldn't be at the event myself, but I've got some photographs to give you all a taster of how wonderful it was. An amazing day organised by some amazing people. Thank you.
But not only did a few people wander in and sign up as bone marrow donors - an incredible 52 people ventured down to the beach to sign up. 52 people! I was genuinely blown off my feet when I heard it was that many! The fact that all those people took the time out of their day to sign up is truly amazing, and I wish that I could go around and thank each of you 52 wonderful people individually. By just signing up you have given me the possibility of life, and I will never be able to thank anyone enough for that.
As well as those 52 amazing prospective donors, I am so grateful to all those at Cineworld and Marrow Aberdeen for making the clinic a possibility. It was your hard work and support for me that made the event successful, and I am so grateful. Like I said in my card - I promise to buy you all a drink when I've beaten this thing!
Unfortunately I obviously couldn't be at the event myself, but I've got some photographs to give you all a taster of how wonderful it was. An amazing day organised by some amazing people. Thank you.
Friday, July 3, 2015
Day 19
First of all I would like to thank you all for your input over my wigs. I've read everyone's comments and messages, but I'm still finding it a really hard decision. It means that the options are endless for a new style of hair, which makes choosing my wig such a tough decision. There are almost TOO many options. The final decision will be made on Monday though, so watch this space...
It will be just in time too, as the hair is slowly starting to fall out - I've been leaving a small trail of hair behind me wherever I go. As well as wigs, there are lots of other ideas for covering my balding head, including this elastic bandana which arrived today. Everyone keeps saying that I have a nice shaped head, so hopefully when I am bald, it won't be too bad.
In other news, I'm sure you are all delighted to know that my bum feels much better. So much better in fact that I managed to have a walk around today. And not just any walk, but a walk OUTSIDE. I feel like I've not been outside for some time, so this was pretty incredible. We managed to walk to the Maggie's Center, which is a beautiful building to be used by anyone going through cancer and their families. They offer some pretty incredible help at Maggie's, including a nutrition class and a 'look good, feel better' class, which I will be attending next week. The 'look good, feel better' class gives you the opportunity to be taught how to cleanse, tone and apply make up by cosmetics specialists. So, hopefully they will be able to make sure that I don't look too bad when I'm bald after all. And just to top it off, I get a goody bag full of make up from the likes of Clinique, Clarins and L'Oreal, as sold in Debenhams, John Lewis and Boots...because I'm worth it!
Another charity within the hospital are Friends of Anchor who offer weekly craft classes. So far I have attempted a broach (not very successfully), but I've also been making sharpie designs on crockery. So, if anyone wants a decorated mug or plate let me know - I'll be taking in the orders.
Finally, I have to give a huge shout out to all my friends at Queens Links Cineworld in Aberdeen, who are organising a bone marrow event on Sunday. The fact that you guys have organised this for me is just incredible, and I feel so lucky to have people like you supporting me at the moment. For anyone in Aberdeen the event will be 12-5pm on Sunday, so make sure that you drop in to learn more about becoming a bone marrow donor. Thank you again to everyone for all your support so far - you are all amazing. And I even have my own poster now!
It will be just in time too, as the hair is slowly starting to fall out - I've been leaving a small trail of hair behind me wherever I go. As well as wigs, there are lots of other ideas for covering my balding head, including this elastic bandana which arrived today. Everyone keeps saying that I have a nice shaped head, so hopefully when I am bald, it won't be too bad.
In other news, I'm sure you are all delighted to know that my bum feels much better. So much better in fact that I managed to have a walk around today. And not just any walk, but a walk OUTSIDE. I feel like I've not been outside for some time, so this was pretty incredible. We managed to walk to the Maggie's Center, which is a beautiful building to be used by anyone going through cancer and their families. They offer some pretty incredible help at Maggie's, including a nutrition class and a 'look good, feel better' class, which I will be attending next week. The 'look good, feel better' class gives you the opportunity to be taught how to cleanse, tone and apply make up by cosmetics specialists. So, hopefully they will be able to make sure that I don't look too bad when I'm bald after all. And just to top it off, I get a goody bag full of make up from the likes of Clinique, Clarins and L'Oreal, as sold in Debenhams, John Lewis and Boots...because I'm worth it!
Another charity within the hospital are Friends of Anchor who offer weekly craft classes. So far I have attempted a broach (not very successfully), but I've also been making sharpie designs on crockery. So, if anyone wants a decorated mug or plate let me know - I'll be taking in the orders.
Finally, I have to give a huge shout out to all my friends at Queens Links Cineworld in Aberdeen, who are organising a bone marrow event on Sunday. The fact that you guys have organised this for me is just incredible, and I feel so lucky to have people like you supporting me at the moment. For anyone in Aberdeen the event will be 12-5pm on Sunday, so make sure that you drop in to learn more about becoming a bone marrow donor. Thank you again to everyone for all your support so far - you are all amazing. And I even have my own poster now!
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