10 days of chemotherapy & infection: thursday 12th september 19

DAY 1: THURSDAY 12TH SEPTEMBER 19:

I got admitted about 1pm, saw a nurse who said I may need to have a picc line put in for a temporary period or have a canular put in for a temporary period also, as there was alot of emergancys to have hickman lines fitted and there wasn't a space for me to have mine fitted today. I was really worried about this as my veins aren't that big. 

Saw the doctor later who said that my hickman line is booked to be fitted tomorrow morning so I don't need to have a picc line or a canular. Then he said after I've had my line fitted and I'm back on the ward I will be starting my chemotherapy for 10 days. After 10 days of chemotherapy depending how it goes and how my blood counts recover after, etc. Depends on how long I'll have to stay in after chemotherapy it could be up to 2 weeks to 1 month or even possibly longer. But saying that he said I may be able to go home the same day as the last day of chemotherapy. And then when discharged from hospital I will get seen in clinic every week or a couple of times a week. He said I will get very neutrapenic also. 

I got started back on tablets that I was taken off when I was in remission as now I've relapsed Its like starting my treatment from the beginning again. Went to bed and in the middle of the night I was awoken by my neighbough a tall old lady standing over me, I woke up in a fright as I was dreaming of someone standing over my bed, the old lady went "I was just checking you are ok" I said "I'm fine loverly" she then said "I thought you was dead" i said " I'm fine loverly and I'm very much alive" she then went and got back in her bed and then I went back to sleep till the morning. 

DAY 2: FRIDAY 13TH SEPTEMBER 19:

7am a nurse came in and gave me a gown and told me to get ready as I was soon going down to have my hickman line fitted. It got to about 8am and 2 women in scrubs came and got me, they did a pre-OP paperwork and they sent me to have a wee so they could do a pregnancy test as they use xray equipment in the theatre. ( pregnancy test was negative). I then had to sign a consent form to say yes I was happy and that I consent to having the hickman line fitted. I also had to sign a consent form for my chemotherapy to say yes I will have it. 

I was upset and kept crying as today is when it all becomes real that I've relapsed. The 2 women took me to ICU where I was having it inserted. They toke me there on my bed so I didnt have to walk and when I come out I would likely be in alot of pain so going there and back in my hospital bed was a good thing. 

About 10am I was called to have it fitted, I walked across to the theatre and got prepped steriley and had it inserted. During having my line inserted I had gas and air for pain relief as at points it gets really painful. About 11am I came out of theatre they slide you onto your bed from the theatre bed. I noticed that my pertical rash had appeared again. I was very fragile,sore,bruised etc when I came out. 

My blood pressure was very low. I then had to spend 1 hour in recovery. I asked the nurses in ICU if i could take pictures of the theatre etc they let me take pictures of the theatre

but I wasn't allowed to take pictures of my xray but they informed me that if I contacted pals via email they should be able to organise putting all my medical pictures on a disc. 1 hour recovery was up and my blood pressure was still low. I got taken back to the ward and back in the bay I was in. I got back there and they started me on chemotherapy, they gave me some anti-sickness but I still felt extremly sick. My mum,dadand partner came up to visit me, they toke me out for a walk outside and too the hospital shop when I wasnt attached to the chemotherapy. At night I had extreme cramps in my tummy. I also got extremly upset as I didn't like how I was feeling as I felt extremly sick also. Then eventually I went to sleep. 

Day 3: saturday 14th september 19:

I woke up in the morning and I felt really rough as I felt sick still and very nauseated. I got given nosinan (a very strong quarter of a tablet anti-sickness) which made me sleepy when it kicked in, I slept all day, I also didn't eat hardly anything today as all I ate was 1/2 piece of toast and 2 plain crackers. I slept the rest of the day aswell as I was completely knackered. 

Day 4: sunday 15th september 19: 

I woke up feeling refreshed and ready to go, I had breakfast which I managed to eat 1 piece of toast with a small bit of butter and jam on. I still felt tired but I felt ok. My anti-sickness medicines were helping as I now have nosinan and ondanstron together, I ate alot more today then I did yesterday but they were still small amounts. I had my chemotherapy given to me at 10am today and 10pm. I had temperature of 38°c, I also had low blood pressure so the nurses removed my bed covers off me and put the fan on. The nurses then said that actually my temperature was 37.5°c instead of 38°c. Then nurses said that they will keep checking on me but I felt fine. 

Day 5: monday 16th september 19: 

Today I have been told I'm now neutrapenic. I woke up at 6am and had my obs done and blood taken, had 2 pieces of toast with a small amount of butter and jam on them, and 1/2 a pear. I wrote in my book about what has been happening. 2 if my adult cancer friends came and visited me after lunch which was a loverly surprise. At lunch I ate 1 sausage in a small white roll and 1/2 of chocolate sponge with custard. I drank alot of orange juice today. I still was very tired but managed to stay awake till 15:11pm so far... 

Later on i saw the doctors who said they happy with me and they said that they think my temperature was because it was hot on the ward. From my room window i could see where the ambulances go to A&E and where the helipad is. Then I managed to play games on my phone and watched catch-up hollyoaks. For my tea I had sweet and sour chicken with a small portion of chips and a pear and orange juice. Later on I ate a Turkey and salad cream sandwich which i was craving which was loverly. I had my dressing of my hickman line changed as the glue at the top wound from when i had the line inserted was drawing in the dressing into the wound which was uncomfortable. At the bottom of my dressing it had become very itchy as I had started getting blisters which were from a reaction of the line dressing. A man from the hospital radio came around the ward asking if we would like a song played on the hospital radio between 2030pm and 2100pm tonight. I chose to have the song someone you loved by lewis capaldi. I recorded it on my voice recording app on my phone so I could save it as a memory for the future. At 2130pm the nurse came and told me that I'm moving from the bay to a side room on my own, right near the front desk. When I moved to the side room I looked out of the window, the view was incredible you could see where the ambulances go for A&E and you had the perfect view of the helipad. 

Day 6: tuesday 17th September 19:

Woke up about breakfast time, and I had a very sore neck (think it's from laying too flat as pillows werent very plump). Mum, my brother and partner visited with 2 of mums work mates which was loverly. I had cuddles with my partner and we laughed and spoke about different things which was loverly. About 11am I had my chemotherapy. Had my dinner and drank alot of orange juice (yummy!). We went for a walk to the shop and then all my visitors all went home. 

During the afternoon I had a nap as I was extremly tired. I then woke up to have my tea. My neck, jaw, hickman wound, and shoulder were still really sore swollen and bruised so I had some pain relief. Also my wound where the line was coming out of my body was bleeding.  

Day 7: wednesday 18th September 19:

I woke up at breakfast time and I saw a helicopter land on the helipad. I told the nurse as I had been struggling with my bowel movements. The nurse told me that I am prescribed lactilose. I then had a wash and got up and went for a walk around the ward (I did about 10 laps). During walking I weighed myself on the scales and I'm now 99.2kg so i havent lost that much as when i was admitted on 12/9/19, i was 100kg. My neck, jaw, hickman line wound and shoulder, etc is still very sore, bruised and swollen. I'm having regular pain relief which was slightly helping my pain. The doctor wrote me a sick note as I needed one for work and a letter I needed also to say I was poorly having more treatment again. My hickman wound keeps bleeding so they said they are going to keep a eye on it. When I had chemotherapy tonight my line made a funny noise when they flushed it though. It made me giggle as it had never done that before. 

Day 8: thursday 19th September 19:

Last night I had a nightmare that noone loves me including my family and partner and that they were never coming back to see me. It was horrid. This morning I had breakfast and had a wash and saw my consultant who is happy with me and happy how my treatment is going, he said he hasn't got anymore bone marrow biopsy results back yet. I told him about my hickman line wound keeps bleeding and he said that they aren't to worried but they will keep a eye on it. Later in the evening I felt really tired and fragile. Everywhere was hurting and my tummy kept cramping.

Day 9: friday 20th September 19: 

Last night I slept like a baby, I still feel fragile and sore this morning. I told the doctor who prescribed me some numbing mouth wash to see if that would help my jaw pain anymore. He also said that the areas I'm in pain with could hurt because of the chemotherapy steroids I've been having as they could of maybe made my throat  glands inflamed so that could also be the reason. He said that maybe sucking on citrus sweets may help. He said to the nurses about getting a urine culture done as he said I could still possibly have a urine Infection from before. He also said that the cramping of my tummy could be IBS or something else so he going to get me to have a xray to have a look and see if there a cause to why I getting this cramping in my tummy. He told me that apparently my tummy feels and sounds fine which is a reassuring thing. He also mentioned that because I have blood cancer and blood goes all around the body sometimes it can affect many places with no actual reason. Later on I had the xray of my tummy. The porter who toke me there and back commented on my superhero face mask which I had on asking me if that was my own mask or not so I told him yes it's my own one and my nan made them. 

Later on that day mum and dad came to visit, we went for a walk to the shop and saw a friend of mine I hadn't seen in ages so we stopped to have a little chat. From the shop I got a solero icecream and soft mints. We came back on the ward and mum and dad had a coffee from the tea trolley going round and some biscuits. A little while later the guancologist came to examine me as I had a lump appear in my vagina so mum and dad went home.  After she examined me she informed me that is definitely something there but untill I'm better and after I've had chemotherapy they won't do anything about it because of the too higher risk of getting a infection. Tonight my blood pressure was very low.

Day 10: saturday 21st september 19 : 

 All last night I didn't sleep well as when the nurses checked my obs my blood pressure was really low, so they made me drink lots and kept checking on it all night. 6am the nurse took my blood from my line and then I had my obs done. I had breakfast and my jaw was still in alot of pain. I saw the doctor and he said they still very happy with me and that my treatment has been going well and they are happy I've stayed a stable weight too and that my bowel are working ok. He also said I've done well not getting any major temperatures, I told him about my jaw and he looked inside my mouth and said that it looks okay. He then felt from my Hickman line up and I was in alot of pain all the way up to my right ear. He said that the pain  seems to be to do with my line and it could possibly be bruising from having it inserted or it could be laying funny on a nerve. He then told me that I can have different pain relief and any pain relief they have here if I need it and if then it doesnt settle down then they might remove my hickman line and put a picc line in instead. I told him that having a picc line terrfiys me as I only have little veins in my arms and that I truly really scared of having on put in so I would rather keep my hickman line in even if it causing me pain and discomfort. 

Day 11: sunday 22nd september 19:

Last night my blood pressure dropped again. I kept drinking but it still kept dropping, one of the nurses said it always seems to be at night time this happens. The doctors came in this morning and they said that my blood pressure isn't much of a worry but if I feel/get dizzy or lightheaded they will then try sort it. I had a wash and I washed my hair. When I finished washing my hair I dryed it and looked in the mirror and it was very patchy.

Mum and dad came up a little while later and we decided to shave the rest of my hair off. But the hospital only had crap disposable razors to do it with, j attempted to shave a bit of my head but I didn't do it very well as I cut my head in a few places so I let mum and dad finish it off the best they could. Afterwards I asked the nurses if i could go for a walk with mum and dad and they said "yes", so we went for a walk, got a icecream from the shop and then we went for a walk outside we walked via the carpark to the fish pond. On the walk outside we was walking and I looked down and found a loverly little norfolk rock with a rainbow painted on it. 

So I picked it up and kept it as I'd never found one before that was my first one i found. We sat by the fish pond so i could eat my ice cream and have some fresh air,then once we was ready we got up and stood by the fish pond looking at the fish. When we was ready to go back to the ward we walked towards the hospital entrance and I felt funny. I felt like as I was trying to walk one way my body was floating the other and I felt really unsteady on my feet. So I grabbed hold of mum and told mum and dad how I felt. We carried on walking to the ward and I was holding on to dad. When we got back to the ward I still felt the funny feeling and also I was very very very out of breath, I rang my bell and told them how I was feeling and then the nurses checked my obs. All was fine but I had a tempeture, the nurses came and took some blood cultures (blood from both my arm and hickman line), And gave me some paracetamol. Then I saw the doctor who examined me and she said that when she listened to my chest on one side it sounds muffled and the other side sounds quiet. So she said that I've got to have a chest xray at some point tonight. I'm also out of breathe when I speak but she said my haemagolbin is good. She asked me if I am asthmatic and I told her that when I was younger I was but not now that I'm aware off. I asked her about my results from my tummy xray the other day and it came back slight constipation. The doctor said that she is going to start me on antibodics. At 1800pm I had my obs checked again and my tempeture was okay this time but my pulse and blood pressure was low And I'm still awaiting my xray.

Day 12: monday 23rd September 19:

Last night I was still very breathless, everytime i would be asleep i would wake up all out of breathe. This morning I'm still awaiting my xray but I did have my IV antibodics. I'm still having help to get to the toilet and back. I saw the doctors and a consultant and they said they thought I had a bad night. I had to have help to get to the bathroom to wash by sitting on a bath seat so I wasn't standing as standing was too much on my legs. A doctor ordered me to have swabs done but haven't had them done yet. At 1400pm I got taken for my xray for my chest, the doctors said that hopefully the chest xray will give some answers to my breathlessness. Today I feel very tired and breathless, the nurse did the throat swab to test for any throat bacterial infection, they also weighed me and I'm now 99.7kg. Today I wrote a poem for a dear cancer friend who I had to say goodbye too and for all the people I have lost to heaven aswell. 

About 1900pm a Male junior doctor came into my room and told me that I haven't had my last chemotherapy dose, (I thought he was coming to speak to me about my xray results or something). He told me my last chemotherapy dose of cytarabin has gone missing and they think I've already been given it or they haven't gave it at all. He told me that they havent replaced it as if I had extra it would overdose me. He asked me how I felt about it and I told him I felt shocked and that I appreciate him telling me. He informed me that himself and dr laws are looking into it and I will not be having anymore chemotherapy untill my next cycle of chemotherapy in the future. Also 2 friends came and saw me today.

Day 13: tuesday 24th september 19:

Last night I kept tossing and turning and struggled going to sleep. I woke up at 6am, I had a sore bum from spending so much time in bed which keeps bleeding so it's more sore, so I told the nurses. I had breakfast which I ate 2 yoghurts. I had help to walk to the bathroom by the nurse and then I  had a wash. During my wash I noticed that I had a bruise on the inner bit of both arms in identical places. When I saw the doctor they said that they keeping me on antibodics as its help keeping my tempeture down, they said they speaking to respiratory doctors and nurses about doing a test where I have to have a nebuliser and it makes me bring up some gunk which they will send to the lab to test for a certain bacterial infection. I've got to have that done as the throat swab I had yesterday the lab won't use for the type of bacterial infection they are looking for. The doctors told me that my haemagolbin is 7 today and as they are rubbish I've got to have a platelet transfusion and a red blood cell transfusion and then hopefully the levels will come up and I'll hopefully start to feel a bit brighter. At 1420pm I had the sputum induced nebuliser test. What they do is they put alot of saline in it so it tastes really salty, you have to breathe in and out of the mouth piece. It made my chest feel really tight and as the test was happening they were checking my oxygen levels. The respiratory nurse said the bacterial infection they looking for is PCP which is a form of pneumonia. the test makes you cough up sputum (clear white froth) from deep down in your lungs, after the test my chest still felt tight, due to that happening I was prescribed a normal nebuliser by the doctor for as and when I need it so hopefully it will help. Another 2 of my cancer friends popped up to see me which is loverly, in the evening my 2 friends and there children come and saw me, I also had to have another blood transfusion and another platelet transfusion and also my nebuliser. At 3am my blood pressure was really low and my pulse was really fast so the nurses got the night doctor to come in and check me over, he prescribed me fluids from 4am to 8am.

Day 14: wednesday 25th september 19:

Very tired this morning, I had breakfast, saw junior doctors and consultant who said my throat swab and blood cultures have come back fine, my chest xray came back normal. They said they going to keep me on antibodics for a couple more days, they also prescribed me a inhaler so I can get used to using it in hospital but then use it when I go home as currently using a nebuliser in hospital. My mum and auntie came up to visit me and brought me loads of goodies to eat, we ate lunch together which was mcdonalds that they brought up and it was nice to eat together. We then went for a walk and there was a craft fair downstairs on the ground floor of the hospital, we had a look around and brought a few things we then went to the cafe where we had a hot drink, then we went back to the ward (I felt a bit better as got some proper air in my lungs which was nice). When they went home I did a lap of the ward and then went back to my room and rested. The nurse then came and told me that I've got to have another platelet transfusion today. Later on I had my platelet transfusion. 

Day 15: thursday 26th september 19: 

I slept well last night, my obs seemed ok, I saw the consultant and junior doctors today, they asked me how I was feeling and I replied ok apart from feeling and being out of breath. They started me on my blue salbutamol inhaler and spacer today. They informed me that they going to put me on oral antibodics today to see how I get on. The said that they want me to go for a decent walk and then have my obs checked when I get back on the ward to see if they change when I'm walking etc. They also informed me that they putting me on X5 acilovir a day as I have coldsaws on my lips. They said I obviously have a infection somewhere but they unsure where it is exactly and potentially I can go home tomorrow. They said when I'm home I need to check my temperature morning and night and if I feel unwell I must check it inbetween. I got to attend clinc 3 times a week. Later on I went for the decent walk as i walked to the cafe and back which is a good distance. When I got back to my room on the ward a nurse checked my obs and they where better than before I went which was slightly strange. 

Day 16:, Friday 27th September 19: home day:

Today I got told I could go home, so I packed all my things up ready to get discharged and picked up. I weighed myself and I am now 99kg so I've lost 1kg since I first came in.