Posted by: janedb | April 11, 2013

4th January 2013

I suspected I would be going into hospital but I did not expect my re admittance to be so dramatic. I knew I was not feeling right when I went to bed and thought I was going down with a virus and would phone the ward after a sleep in my own bed.

At 6.00 a.m. I awoke wanting to go to the toilet, when I tried to get off the toilet I collapsed and must have bumped my head on half the bathroom trying to stand up. I could not understand what was wrong and my boys came out of their bedrooms to see me on the bathroom floor.

They rang their grandparents number whilst I crawled back to bed, my dad answered and did not understand the urgency of the situation. He did not wake my mum and I went back to sleep, I know that was the wrong thing to do but I felt disorientated.

Mum came round at 9.00 a.m. when dad had told her, and she was shocked to see when eye shut and one half shut, I had two black eyes.  She got cold compresses to try and bring down the swelling and rang ward 41.  They told her I needed to come in to the Accident and Emergency Department (A&E). She rang my dad and told him to come round to look after the boys as I had to go in. My boys were shocked to see the state of me and were still dealing with images of me earlier in the morning. It was uncomfortable to wear my glasses as they dug into the swelling.

My case sits in my room permanently part packed as if I was a pregnant women awaiting birth, she just added in a few extra items and we were on our way. I was feeling sick so I was holding a bowl in front of me and sat in the back so as not to distract mum.

On arrival she had to find somewhere to park near A&E. I walked in and there was a queue, mum had to leave me so she could move the car.  I couldn’t stand without feeling sick so asked if I could sit.  When it was my turn to go to the desk I handed over the letter I was given on my release on the 2nd January and said that I needed to sit. Every time I stood I was swaying as if I was going to faint. The receptionist got straight on the phone to get someone from Triage to get me.

I was walked round the corner whilst a trolley was found. Once on the trolley I was sick and was moved straight to Resus.   Everything seemed to happen fast. Two iv’s were put in for fluid and antibiotics, blood was taken for cultures, and I was whisked off for a CT scan of my head. I then had a chest Xray. My CT scan was clear so I had no bleeding on my brain and my chest Xray showed no infection. My consultants were informed I was in and doctors came to liaise with the A&E staff. I was in A&E for 9 hours being monitored.

Most of the time is a blur as I was not really with it. The staff were excellent and very caring. I just remember having different fluids put in via IV. They allowed mum to stay with me but once it got to afternoon and I was waiting for a bed, she left. I spent the time sleeping on and off. I was offered food but just wanted a drink, so I was given a cup of tea.

After 9.00 p.m.  I was moved to ward 41 and into a side room in case I was infectious and could pass something on to others. Some would think a side room would be nice with its own bathroom but for me they are isolating. I had spent a bad week in a side room in my first month of treatment and really did not like to be cut off from others. I did not want to repeat how I felt the previous time. That week I had been unable to sleep, due to worry about messing myself I refused sleeping tablets and spent most of the nights awake. I had hallucinated, giraffes came out of the door, a little man waved at me from the strip light and the smoke alarm turned into a PAC man.

I had asked to go home in an ambulance that week, due to the despair caused by continuous diarrhea, it had made me want to give up. This time I knew I had to fight those feelings.

Posted by: janedb | April 10, 2013

Home for Two Days

Breastfeeding symbol

Breastfeeding symbol (Photo credit: Topinambour)

I was released in the afternoon of January 2nd, I thought I felt alright but had diarrhea before I left the hospital.  I put it down to a reaction to antibiotics and did not worry or tell anyone.

That night I felt fine and the diarrhea seemed to have stopped but the next day Thursday January 4th I was not myself.  I thought I was just feeling depressed. My ex had sent some upsetting emails whilst I was in hospital and I thought he had just stirred up all my emotions, I had no idea what was going on inside me.

I first encountered depression after the birth of my eldest, looking back lack of support from his dad, breast feeding on demand, and trying to be a perfect mother using reusable nappies without a dryer in winter. The day before I gave birth he got me to go shopping in town, as he wanted a new music center. When I would not bend to his will whilst we were out shopping he walked off and left me on my own in the center of town. I was 13 days over due and was panic stricken, but I ended up having to apologize to him. We went home but contractions started, he had not got his music center so he took me to the local co-op superstore where he had me use my details for the financial agreement.

When I stayed in hospital more than 24 hours he complained that he was on his own, not what was best for me. I was struggling to breast feed and needed the midwifes  help.  When we did return home I was so low I did not use my seat belt in the car for the journey.

He had done nothing whilst I was in hospital and I had to put washing on and clean. The only washing that had been done was what my mum had took. I got complaints because the baby cried and he told me to shut him up. To him I was useless as I could not keep him from crying.  The baby slept very little and I think picked up on my anxiety so I could not put him down without him screaming. I remember doing the washing up and hanging clothes out with him in a sling.

With little sleep I could not stop crying, the midwives who visited were very good and got the doctor to visit and he prescribed antidepressants. These tablets has been a constant friend for most of the past 15 years. I did get off them for a while but on April 14th 2000 my baby was diagnosed with Acute Lymphoblastic Leukemia just before he was 2 and a half and my need for them reoccurred. I stayed in hospital with my eldest son. My ex blamed me for him getting ill as there was no cancer in his family. He was also jealous of the attention that my son required. Looking back he should not have had children as he resented their presence.

My eldest is now 6 foot plus and 15 years of age, to look at you would not know that he had been ill. He has to go for a once a year check up and a heart check every 3 years. Due to my eldest having been ill I wanted another son. I had no idea when I came off the pill that I would get pregnant so quick as it took time to get pregnant with my eldest. I had to resort to fertility kits to know when I was ovulating. As I got pregnant so quick it was my fault again, I was told I had done it on purpose, I had tricked and in a recent email I have been accused of practically raping him to have the youngest.

Living with this man I needed the antidepressants to be able to be a mother to the children. I slowly put on weight and was 17 stone when I was diagnosed. Comfort eating got me through. I am trying to find myself again. Due to being so ill in the first month of treatment I lost 2 and a half stone and I hope to loose more.  My boys keep me going, they are my priority.

The next 21 days were to put me at a low point I had not been since I left my ex.

Posted by: janedb | April 9, 2013

December 27th

Happy new year

Happy new year (Photo credit: Amodiovalerio Verde)

Thursday December 27th was clinic day. I had been feeling fine for the past few days but had a sore throat. As I had not felt ill I did not think about it or worry.

I went into my appointment thinking that at most I would be given antibiotics and sent home as I felt so well.  Once I mentioned my sore throat everything went wrong. My temperature was taken and unfortunately it was 38.  I was checked and my tonsils were up. The words I didn’t want to here were said ‘We are going to have to admit you’. I had no  neutrophiles they had dropped to 0.005, so I had nothing to fight the infection with.

I had to let my mum know. We had nothing with us as I was expecting to return home. My mum had to go home pack my case  and bring it back to me. My treatment was started after she had left the clinic. Poor mum had to drive to my house finish dinner for my boys and dad, pack my case, go to her house, pack her case, get back to the hospital.

I was taken to the room behind the nurses desk, and had the usual tests of blood pressure etc. I had a consultant put in a cannula as they could not wait for a doctor to be available. This is not normal procedure as it would normally be a junior doctor who would be given the task. I was given a dose of intravenous antibiotics. I then had to wait for a bed to be available. There were currently 14 patients requiring beds. The nurses were very nice and made me tea.

After 6.00 p.m. a very kind nurse took me up to the assessment unit. There were no beds available so I was allowed to sit in the retreat room. It was a very pleasant room fitted out by donations for a quiet space for patients. A nurse came and did my vital signs, as usual my blood pressure was low, temperature was still over 37.5 but my oxygen levels were good. I had had nothing to eat so was offered a sandwich and a drink which I accepted.

A doctor came to see me, she took blood for cultures and then wanted me put on a drip. Unfortunately I was then sick and felt very ill. The nurse was very kind and got me sick bowls and water to drink. I had gone cold and was shaking, this was due to my temperature so I was given IV paracetamol.

My mum made it back and was very worried by my decline in health, but the nurse said this was a reaction to the antibiotics. She stayed for a while but as I was going to be admitted and she wanted to get back for the boys I told her to go.

After 10.00 p.m. I was moved onto a bed in the assessment unit. I couldn’t settle as they were looking for a bed on a ward for me. I was moved onto Ward 39 at around midnight. I had a second dose of antibiotics before I went to sleep. Unfortunately I was sick again in the night and had the shakes again. Paracetamol was given four hours from the last dose due to my temperature.

I woke the briefly for breakfast and tea before sleeping again. I then woke to find mum at my bedside. She hadn’t woken me so I had no idea  how long she had been there. It was good to see her. My dad used to share the visiting when I was first diagnosed, but when I was having to use the commode I asked mum to visit only. I didn’t want dad to see me in that stay. This suited dad as he did not like seeing me in hospital, so he took over the ironing from mum and fetched my youngest from school. The boys only visited at weekends when I was reasonably well as I did not want to scare them.

Mum had to leave after half an hour of me waking. In the afternoon I was moved to ward 41 the hematology ward. Due to the risk of infection being higher with leukemia patients they wanted me under their care. There is more space between beds on Ward 41, windows are screwed shut due to our risk of chest infections and the neutropenic diet is followed. It was like arriving back home. Ward 39 staff were very nice but I knew Ward 41 staff very well. It was like being with family.

I was back in the same bay I had been in when I first was admitted just a different bed spot. Antibiotics were given intravenously for five days and then on Tuesday 2nd January I was released with oral antibiotics and an appointment for clinic on the 11th January.

New Year had been spent on the ward. My youngest had visited with my mum on New Years eve. It was strange to go to bed before midnight and not have watched the New Year fireworks on the television with my boys. On New Years Day both boys came in which was a treat. I knew it was difficult for my eldest as it took him back to his own illness.

I hoped for a brighter year for us all.

Posted by: janedb | April 8, 2013

Third Cycle of Treatment

The third cycle was started on Tuesday 18th December.  We arrived at the Day Ward for 2.00 p.m.  I took a seat on the ward as there was space and waited for a nurse to cannulate me. I was lucky as a vein was found in my hand quite easily as I had had some time between requiring treatment.

The chemo this time was a beautiful bright blue colour, it took half an hour for the bag to go in and then a flush had to go through until the liquid in the tube turned clear. It was such a bright colour everyone was commenting on it, most others were having clear liquids or blood.

I had four doses between the Tuesday and Friday.  We had to wait for Thursdays dose as pharmacy had ran out and had to get it from the supplier. By Friday I was suffering from Rigors although they were milder than previous, I was hiding from my boys in bed so I would not frighten them.

My work friends broke up for Christmas on the Friday 21st and one of them called round.  I was feeling too unwell to be seen  and I was sleeping.  My youngest son came up after she had gone to see if I was alright.  I realized he was excited by something but I had no idea what.  After about 30 minutes I managed to wake myself to come downstairs.  I was greeted at the lounge door by my son with a blind fold for me.  He showed me into the kitchen then helped me to remove the blind fold. On the table was a beautiful arrangement of flowers that did not need putting in a vase and a very large cardboard box full of presents. This had been sent to me from my work friends.  They decided I wouldn’t be able to go shopping and had made up a Christmas Hamper.

I sat at the table and watched the delight on his face as he unwrapped the gifts for me.  There was Christmas goodies galore and toiletries.  They had included Christmas Cards and money for takeaways.  It was incredible to see it all.

With the tree up and these goodies it really was feeling like Christmas.  I had wrapped the boys presents and was ready for the day in case I was taken ill.

Luckily by Christmas Eve the rigors had gone altogether and I was able to enjoy a Chinese takeaway with boys and my parents.  I stayed up with my boys and watched their choice of films with them. Although we had to be in bed before midnight otherwise Santa would not come.  We followed Santa’s journey round the world on the laptop, with my youngest looking up some of the countries he had not heard of before.

I was first up in the morning and was able to wake them up so they could have croissants and pain au chocolat for breakfast before opening their presents.  They were very happy with what I had brought.

We were then picked up so we could have Christmas Dinner down at my parents house.  The boys were very relaxed and enjoyed themselves.  My eldest said it was the best Christmas he had ever had as he dad was not their to ruin the atmosphere. My parents were also seeing for themselves the difference in the boys the longer they were away from their father.

There was laughter and enjoyment through the day and a fabulous tea in the evening. Boxing Day was spent at home during the day with the boys enjoying the same breakfast as the previous day.  It gave them time to play with their new games. We then had dinner at my parents.

Unfortunately that was to be the last day at home for a while.



Posted by: janedb | April 7, 2013

Break Before 3 round of Treatment

From the clinic visit on the 29th November to the 17th November I had a break between cycles of treatment partly due to my blood count taking time to recover after the second round of treatment.  They wanted me to be as healthy as possible before my body was knocked again.

In that period I had another bone marrow aspirate which showed I was still in remission and further clinic visits which passed without incident. It was very good to have some consistent time at home and enabled me to make plans for the boys Christmas presents.

Christmas decorations were retrieved from the garage of my previous house, luckily my ex was still working at this point and did not catch us. I also ordered presents on line as due to being neutropenic I could not go shopping. I wanted the boys to have a good Christmas with the presents they wanted even if I could not be at home with them. I knew if I was in hospital my mum and dad would bring them into visit, but I wanted them to be able to open their presents in their new home.

I was able to go into work and visit my friends.  It was really nice as I had not told them so surprised them all. They were really surprised at how well I looked and how good I looked since I had lost 2 and a half stone. The message was passed round work that I had come into the school and I had a wonderful time seeing all these people I was missing.  I even hugged one of my favorite students (it was done in full vision of other members of staff).  She is a delightful young women and I hope to be able to convince her of this when I return.

It upset me in away as this academic year I has started being a co-tutor and missed my tutor group and had a fabulous timetable and was missing my lessons.  There were other years I would have been glad to take time out due to some of the classes I had.

I was well enough to go to the staff Christmas Party at the Belmont Hotel in Leicester on the 7th December.  It was wonderful to get dressed up and feel normal.  My friends had organised it so that our department sat together so I could catch up with them all.  I also had chance to see other friends from the school. For a Christmas do the food was very good and we were all looked after.  I was unable to drink but it was very entertaining watching people who became worse for wear. I managed to stay to the end so was very pleased.

I was able to go on outings with my mum, we picked places and times of day when things were less busy so I came into contact with less people.  My sons also seemed  relieved to have me home. My youngest son and I put the Christmas decorations up at the beginning of December, including getting out his favorite Christmas Homer.

Christmas decorations

Christmas decorations (Photo credit: Wikipedia)

The only dark cloud was my ex was in touch via email and accused me of making up my illness.  He sent various vile emails before he sent one to apologize.  I should have discontinued contact at that time but I still felt guilt for leaving him  and responsible for his welfare.  Now I realize he is a grown man and can look after himself.  He caused us to leave due to his alcoholism and behavior.

He used to hide his empties in the cupboards or on top of the kitchen cupboards, and when I found them said they had been there for ages. I was made to feel guilty for doubting him, now I know he was very manipulative, but he had eroded my self esteem, and I hated myself. I ate for comfort and was very overweight.  Chocolate was my solace and kept me from going mad.

We were banned from the kitchen whilst he was cooking, and meals took forever to be cooked as he was drinking in secret.  The food was often inedible because he was too drunk to keep an eye on it properly.  He masked the smell of his booze with energy drinks which smelt strongly of herbs on his breath.

I was too scared to confront him on many occasions as he was 6 foot 2 and weighed 24 stone.  He would deliberately back me against a wall so I could not escape then tower over me.  Looking back on many occasions I should have rang the police.

Luckily the boys seem to be moving on well and do not dwell on the past.  Both boys though want no contact with their dad.

Posted by: janedb | April 6, 2013

Second Round of Treatment

Mum drove me into the hospital for 9.00 a.m. so I could have a blood test before a decision was made to give me any chemotherapy.  We arrived at the Day Ward, but I was asked to go to the Day Clinic on the ground floor for a blood test.  I was told that the results would be an hour.

We decided to go for a drink and to the shop while we waited.  They had a Costa Coffee outlet in the Leicester Royal Infirmary, (which has now gone) where they served decent coffee and tea in proper cups. SERCO was taken over and the new people running the restaurant have removed the Costa Coffee and drinks are all served in paper cups.

Just before the hour we returned to the Day Ward to await details of my blood results, little did we know it would be a day of waiting.  The doctors finally let me know we were going ahead at 11.00 a.m., and that my chemo would be ordered. We did not know then how long it would take.

Ward 41 is a very small ward, or seems it for the amount of people constantly moving through it. It seems that as one person is sent home another 1 or more are waiting for the bed. Due to the nature of the conditions on a hematology ward, staff are always rushed of their feet, but still have time to be kind and caring.  The doctor had to do the ward round before she could look at my blood count, then she had to get the paperwork done to put the order in.

Luckily we both had taken books to read and brought a paper to stop us getting bored. By 1.00 p.m. we were getting hungry so Mum went for some sandwiches. I finally got called for treatment at 3.00 p.m.

The fun then started as I was a nightmare to cannulate due to my veins and the needle had to go in my hands. After various idea were tried to get my veins to come to the surface I had to put my hands under the hot water tap for 5 mins.  This worked as the cannula could be inserted. Due to the nature of the chemo I was given, a flush has to go through first to check the vein is working before the chemo is given.  The chemo is given by being slowly pushed into the tube that the flush is going through so that it does not harm the vein. The nurse sits and slowly pushes the chemo in over 15 minutes then the flush is left to finish.

The delay was not due to the Day Ward staff who were lovely, and when they realized how long I was waiting kept checking I was okay and chasing pharmacy.  It is another very busy place, with too many patients for its size, and often has to open at weekends to get the extra patients through.

We finally left at 4.00 p.m. with a request not come back at 2.00 p.m. the following day for the second dose when the Day Ward would be less busy. Due to the length of time blood transfusions take they like to start them first in the morning.  I was to have a dose of chemo for five days and take the ATRA for the nest 15 days. I was also given anti sickness tablets to take.

Tuesday and Wednesday treatments went without problems other than the placement of a cannula. Unfortunately on Thursday I awoke and was having side affects of  rigors (a violent attack of shaking). I did not feel up to travelling in to hospital but knew I had to.  On the way in the rigors were similar to epileptic fits and were unnerving mum who was driving.  Due to the queue for the car park I had to walk into the hospital, I had rang to see if someone could meet me but they were very busy. The walk involved going through the Windsor building through part of the car park into the Osborne building and getting to the second floor.

By the time I reached the Day Ward I was feeling very ill, they took one look at me, got me a wheelchair and took me to the Assessment Ward on the first floor for checks.  There was a free bed so I was able to lie down, which made me feel more comfortable as I was shaking so much. The usual checks were done for blood pressure, temperature and saturation levels.  I had a high temperature so had to be admitted.  A cannula was inserted by a very nice young doctor who had had to deal with my veins before on the ward.  He was very caring and always took extra time to make sure he was happy with the vein he had chosen before he stuck in the needle. (All the doctors took the time to cause me as little pain as possible and some would fetch help rather than try due to the nature of my veins)

I was put on antibiotics, given paracetamol intravenously as it is absorbed quicker and takes down temperatures quicker , then put on a drip. I was then moved to Ward 41 to continue with treatment of this side effect. I had only been out of this ward for 5 days and now was back. Luckily it was like a second home now and held no fear.

I was kept in until Saturday and the rigors had subsided in hospital, my blood work had come back clear of infection and was told to attend clinic on the following Thursday.  Unfortunately I had two further episodes on the Sunday night and all day on the Monday.  I phoned the Ward but was told if I did not have a temperature,which I didn’t, I did not need to come back in.

After Monday I started to feel better and made it through to the clinic appointment without further incident

Intravenous cannula

Intravenous cannula (Photo credit: Wikipedia)


Posted by: janedb | April 6, 2013

Returning home in November

Bone marrow biopsy needle

Bone marrow biopsy needle (Photo credit: Wikipedia)

After 4 weeks in hospital it was strange to be going home, I felt scared in the car as I did not know what was going to happen.  On arriving home my youngest son was out playing with his friends, it took him time to realize that it was me as I had a scarf  covering the lack of hair.  My hair had started falling out after 2 weeks of treatment. Not all of my hair fell out, I was left with thin wispy bits. He came over and hugged me, but wanted to stay out playing, so I told him he could.

I could hardly walk and looked like a zombie, with my arms out for balance and my feet shuffling as I could not lift them.  The first thing I wanted was a decent cup of tea as the hospital tea though warm was not very pleasant. After a delightful cup of tea I asked where my eldest was.He was in his bedroom so I had to get up the stairs. After 4 weeks of being virtually bed bound this was very difficult. He was pleased to see me, but was shocked that my diagnosis was similar to his.

Mum cooked dinner for us all, and we ate as a family, with my dad joining us.  It was nice to have a home-cooked meal though I still had little appetite.  I was also on the neutropenic diet so their were foods that were banned from my diet to stop me getting ill. For me it meant no salads, fruit that could not be pealed, no prawns or takeaways.

My youngest joined me in bed that night, a reaction to me being away for so long, though he had coped well with my absence. Being at home with just the two boys was scary as I was worried about getting ill. I was in remission, A bone marrow done in the last week of hospital had confirmed the treatment had been successful. My next treatments were consolidation to keep the leukemia away.

The bone marrow test had been done in my bed space on the ward, as I was isolated due to the Norovirus. They brought the equipment to take a bone marrow aspirate to my bed side along with a tank of gas and air.  The test was done with the curtain drawn round for privacy, with the nurses laughing at the noise made by the gas and air as I was taking great gulps of it. It was making a very funny noise. Gas and air is great stuff for getting through pain as I just feel like I am floating on the ceiling. The staff on Ward 41 were all very friendly and put you at your ease. I had learnt to trust, to let go and not need to be in control.  These people were the experts and knew what was best for me.

My parents wanted to know if I wanted to let my ex know, but I refused as I did not want him trying to get the boys.  I did not want any kind of custody battle whilst I was having treatment. As it is he has not shown any interest in them since we left him.

I was released on the Friday and had the weekend at home before treatment started again on the Day Unit the following Monday.  It took most of the weekend to be able to walk reasonably normal again though it was good to be home to enjoy my own surroundings.

Posted by: janedb | April 4, 2013

First month of treatment

I was started an all-trans-retinoic acid (ATRA), (a strong dose of vitamin A), a capsule that is classed as oral chemotherapy. There was discussion about being placed on a trial where I could receive arsenic instead of chemotherapy.  Unfortunately for me at the time of being diagnosed there was a world shortage  of arsenic and the trial was closed.  If I had been on the trial and had arsenic it would have had less side effects.  At the time I joked that it was due to wives wanting to murder their husbands.

I was given a bone marrow test in order that they could confirm their diagnosis although my blood smear showed the typical cells present.  Luckily I was given gas and air for this.  The doctor doing this had to get a colleague into aid her as she could not get part of the bone and by weird coincidence the doctor who came into help was the same doctor who used to perform these   these tests on my son when he was going through his treatment.

I therefore had to go down the chemotherapy route. The chemotherapy I was given was dangerous to my veins and could cause amputation if it leaked out of the vein, I was therefore cannulated in the hand so that if it went wrong there would be less to amputate. Scary to hear but the staff were excellent and very caring. I was very scarred of needles when I was first admitted and the doctors were excellent at dealing with this. I had a PICC line inserted (a permanent tube in the arm to allow medications to be put in the vein and blood to be removed for tests. I was unlucky that it stopped working after its first use for a platelet transfusion and had to be removed.

Unfortunately I had a reaction at the start of my treatment, differentiation syndrome which caused me to have severe pain in my chest, require oxygen as breathing hurt and need morphine.  To counteract this I was given strong steroids to get me over this as I needed to keep having the treatment.  The steroids caused complications which were unknown at this stage.

Although the blood transfusion and fluids had made me feel better than I had for weeks, the steroids started me on a decline.  When my doctor came in to see me from my GP surgery I was so out of it on morphine I could not hold a proper conversation with him.  Whilst in this state I also had to choose my free NHS wig, all I can advice is do not make any choices whilst on morphine.  The wig looks dreadful but my youngest son enjoys looking like the men out of the 118 ad.

By week three of the treatment I had severe diarrhea which was black, at the time I had no idea of the significance of this and did not make my doctors aware, although the nurses were aware as they were having to help me clear up. After several days of using a commode by the bedside and getting more upset I was transferred into an isolation room in case I passed anything on to another patient. The diarrhea was that bad that I still required a commode at the side of the bed as I could not make it to the on suite bathroom. I seemed to be permanently on a drip of fluids.  After a week a student nurse took a sample of the diarrhea to send off and that was when it was discovered I was passing blood.  During this time I had stopped eating and just drank water as my stomach was in agony if I ate anything. It was then discovered I had had an ulcer which had burst.  I was given blood transfusions and a drip to stop the acid in my stomach. I was sent for an endoscopy to check that the ulcer had gone and put on lansoprazole to cut down the acid.  Luckily the ulcer was no more .

It was then decided that I was not infectious and could be moved onto a bay.  This proved to be a mistake. My diarrhea continued though it was back to a more normal colour.  When a sample was sent it came back that I was positive for the Norovirus (severe sickness and diarrhea) which is very infectious.  The bay I was in was then closed and the ward was shut down to new admissions to  stop the spread of the infection. Visiting hours were then reduced for the protection of visitors. I was then confined to a bed space and had to use a commode with just a curtain to screen me from every one on the ward.

On several occasions during that month the doctors had said if you are well we hope to be able to let you out for a few hours at the weekend.  Every time the weekend came something had gone wrong so it did not happen.  Mum stopped telling the boys that I would be home for a visit.

My breathing had become so bad that part of my lung collapsed and I had to have physio to help my breathing improve.  I was given exercises to get me moving  but it was difficult as I only had the small space round my bed.

Finally after a month in hospital I was well enough to go home for a rest before treatment began again.  As I had been bed bound for the best part of a month I had to re learn to walk and was walking like a zombie.

The one thing I learnt about myself was that I was a control freak.  I had had to be to protect my boys in the circumstances we were living in, but also to keep their lives as normal as I could.  I now had to let go and let the doctors have control in order that I could beat this.  That was the hardest thing to do.

Posted by: janedb | April 3, 2013



BONE MARROW: HYPERGRANULAR ACUTE PROMYELOCYTIC LEUKEMIA (AML-M3) Postchemotherapy bone marrow smear from a patient with hypergranular acute promyelocytic leukemia. A single “faggot” cell with numerous Auer rods is present in a background of normal neutrophil precursors. (Wright-Giemsa stain) (Photo credit: Wikipedia)

By October I was signed off work in agony with persistent  ear infections, and on very strong pain killers that left me spaced out.  On the 14th I noticed large bruises on my stomach and when I cleaned my teeth my gums poured with blood.  I spent the night awake as I could not get to sleep and felt like I had very bad flu.

When my mum came round next morning she took my youngest son to school and asked a doctor to phone me as I was too ill to sit in the surgery waiting for an emergency doctor appointment.  When the Doctor phoned me back and I described my symptoms, she told me to come for a blood test ASAP.

At the Doctors surgery I was taken through for a blood test and then for an examination.  When the Doctor saw my bruises and heard my symptoms she asked for a consult with a senior doctor.  This doctor turned out to be my usual doctor.  He asked me if my bruises were spontaneous and I said they were.  He examined my mouth and found I had blood blisters in my mouth.

He told me I needed to got to hospital and I should wait in the waiting room to be told where to report to at the hospital.  He said lightning does not strike twice.  I joined my mum in the waiting room and waited for what seemed like hours before he came out and told me I was expected at the Osborne Assessment Unit at the Leicester Royal Infirmary and that I should pack a case.

Mum took me home so I could pack why she phoned my dad and shopped for lunch.  We arrived at the Osborne building and were directed to the first floor.  On arrival they showed me to a bed, took the blood samples I had been sent with then took a medical history.  The bloods were sent off for processing.  When the results came back more blood tests were taken and speculation was made that it may be Leukemia or other conditions.  This was a shock as my eldest son was diagnosed with acute lymphoblastic  leukemia in 2000.  By late afternoon mum left to cook a meal for my sons as I was told I was being admitted.

In the evening I was moved up to Ward 41 (little did I know it was to become my second home) where the paperwork for my admittance was completed and I was seen by a senior doctor.  She drew the curtains round the bed and confirmed that I had  Acute promyelocytic leukemia and although she would have preferred to wait until someone was with me to tell me she needed to start treatment straight away as there was a risk I may develop serious blood-clotting or bleeding problems.

Treatment was started after I had signed the relevant consent forms. They notified my parents of my diagnosis.  A cannula was inserted and fluids were started as I was dehydrated. I would also need blood and platelets.

My father was devastated and could not believe I had been diagnosed with a condition similar to that of my son. Lightning can strike twice.  I was told I would be in hospital for 4 to 6 weeks.  My parents had to let my children know that I would not be home for at least a month.

I was still so out of it due to the ear infection and could not take it all in, which looking back was a blessing.

Posted by: janedb | April 2, 2013

September 2012

September ended up being a very difficult month for me as my health became poor but had no idea why.  The first week was the first full week of school/work for me and my boys, my parents were also away.  They normally took the youngest to school and picked him up so I had to add this into my eldest’s schedule with bribery and corruption taking place to get him to do this.  I had to get to work in order to sort out my day and get prepared for my tutor group.  As a co tutor early morning meetings have to be attended in order that you are kept aware of any problems etc. of the students in your care.

Unaware an infection and worse was brewing, I was very tired and we ended up having more takeaways than I would have liked.  Pizza and Chinese are the boys favorite, we tried an Indian but the boys were disappointed with this.    The meals I cooked I was either too tired to serve and had to get the eldest to serve or had no appetite when it was ready.

As the boys were not used to helping round the house it was very difficult to motivate them to offer assistance, this is something they still struggle with.  This did not help with my lack of energy.

By the second week an ear infection had reared and I went for the first of four lots of antibiotic.  Each time the infection seemed to go but when the antibiotics were finished after two days it reoccurred.  It was very hard to do my work when the infection was affecting my hearing.  I was glad my parents were back from holiday as they took to taking me to work and picking me up.

As the infections continued I had to have time off work, which frustrated me.  I had a timetable of classes to go to with students I liked, I was enjoying sorting out the administration required for the year, and I was also enjoying looking after my tutor group.  On top of this I had started a course at work with time off in the working day to improve my skills.  Included in the course was two qualifications to update my maths and English qualifications.  Having always found maths difficult I was enjoying the challenge of the practice papers.

Little did I know what was around the corner.

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