Posted by: janedb | September 23, 2014

Nightmare Continues.

As my consultants joke that nothing ever goes right for me, summer 2013 was a roller-coaster of emotions and pain. It had started with the lumber puncture then continued with bone marrow aspirates. I was in a cycle of bone marrow aspirate, positive result, ATRA tablets, bone marrow aspirate, negative result, ATRA tablets stopped, bone marrow aspirate, positive result, ATRA tablets. It is only recently that one of the consultants said to me that an error had been made, each time I was given ATRA tablets it put me in remission levels again so they were unable to make a decision to treat me.

After several months of this cycle I finally broke down when I had to see a Registrar and not one of the consultants, I wanted to be treated again so I could move past this and get on with life again. She got one of the consultants to see me, but I was back on the cycle again. I did however get put forward for the psycho-oncology service and my Citalopram was upped from 20mg to 40mg which helped with the feeling of having no control over my life. There is no possibility of planning as you have no idea what you will be told each time you are in clinic. It was hard to keep the dark clouds at bay, keep happy for my boys, and yet have no idea if I would have a future.

The psychologist was very helpful and I am grateful for the referral, without their help, reminding me that my feelings were normal under the circumstances I was in. No one should have to face leukaemia, let alone repossession of a house, and various organisations chasing me for debts that were not mine but my ex’s. Looking back I am not surprised I became severely depressed with what I was coping with and that I had no one to confide in. I am careful how much I let my parents know because of their ages, both are in their 80’s, but although they look much younger I am careful not to pass on stress to them.

Finally on September 12 2013 I got the news that they would treat me again, this time with Arsenic Trioxide. An appointment was made for a PICC line (peripherally inserted central catheters)  to be inserted, blood test to be taken and the first dose of arsenic on Monday 16th September.

Illustration of a PICC lineThis was my second PICC line as I had had one when I was first diagnosed and was needle phobic. Now I needed one as my veins were so bad it was difficult for blood to be taken let alone a cannula.

Posted by: janedb | September 22, 2014

The Unthinkable Happened

I returned in May to clinic and was told finally that I was in remission, but it felt flat as I had waited so long to hear this.  A bone marrow aspirate was booked for June. No one wanted to celebrate the news, it was like they knew it was going to be so short lived.

The week after my aspirate was done I received a call to come into the hospital with a case as they want to talk to me regarding my result. The shock feeling  was unbelievable. I had only just unpacked my case as I had been given the all clear. I repacked it  after calling my mum to ask for a lift into the hospital. They were admitting me so she did not stay. I was taken into the quiet room for patients, where it was explained that it was returning in my bone marrow. They explained I would be restarted on ATRA to stop it spreading to my blood, have another chest xray, bloods taken, another bone marrow aspirate and as I was having headaches a lumber puncture to check it had not spread to my brain.

It was strange to find myself in a side room again on Ward 41 after time on the Assessment Unit. It is always like being back home, and nurses and other staff kept popping back into say hello and ask why I was back. They kept getting into trouble as they kept being found chatting to me. No one could believe how well I was taking the news. I just wanted to get through the treatment and to stay alive. For me it was a chance to read books, watch DVD’s and have a rest. I did not want to think what may be around the corner.

I had been intending to go back to work and had an occupational health interview,  but due to stress from everything else in my life this got put back. It was now on indefinite hold as I had no idea what treatment I would require. They were hoping to treat me with arsenic trioxide which they hoped would give me less side effects and I would not go neutropenic. I was told I should not have to be admitted to hospital on this treatment.

Due to my veins being so poor I proved a challenge to the young doctors trying to take blood, but as I had got used to the needles I let them try. They have to learn on someone and better it be me and not someone who finds needles frightening. It is amazing what small veins in the hand can be used when they are desperate.

As I was well they decided to let me go home on Friday and they had booked me in for a lumber puncture the following week. It was nice to go home but I was still unsure what was going to happen regarding treatment.

The lumber puncture proved to be a nightmare. You are not allowed gas and air (Entonox) as you can not keep still whilst you are breathing in and out. The only pain relief you are allowed is local anaesthetic, which if you have had this you will know it stings as it goes into the skin.

During the procedure, pressure measurements are recorded and samples of fluid are taken from inside the spine. The fluid is known as cerebrospinal fluid (CSF).  A hollow needle is inserted into the base of the spine under local anaesthetic. The needle passes into the spinal canal, the channel running down the spine that contains the spinal cord and the nerves that come off it.

I had to sit first on a trolley bed and lean over so they could access my spine, after several attempts I had to lie on my side with my knees pulled up. My back was full of local anaesthetic and in great pain, but they finally managed to find the right place. As they thought the leukaemia might have gone to my brain they also put in some chemotherapy. Thankfully that result came back negative and I did not have to endure that again.

I was sent home to wait for my next bone marrow aspirate in a months time, as they did not want to go straight into treatment due to the side effects it could cause. That was to be a summer of physical pain and mental torture.

Posted by: janedb | September 16, 2014

It returned but I am still here.

I finally got told I was all clear at the next clinic appointment, but there was bad news to come.  My worst nightmare had come true, the leukaemia was back.

I will detail in further posts all the complications with the second round of treatment, the highs and lows, but for today I just want to state I am a survivor. During dealing with the leukaemia, I have also had to deal with house repossession, Police searching for my ex, and demands for his debts that occurred  after he left.

I have taken myself from rock bottom fitness and mood wise to where I am now, able to deal with what ever curve balls life decides to throw my way. Nothing is going to knock me down for good. I am a cat with nine lives and I still have some to use.

Tomorrow I do the second day of my phased return to work. Only two hours, but after two years of treatment it is enough as I am going into the classroom again as teaching assistant on my own without any chance to shadow a fellow worker. Scary, but they obviously have faith in my abilities. I hope that it all clicks back into place when I am in the classroom, but I think it is normal after two years to feel nervous.

Today I had a bone marrow aspirate and the nurses in the treatment room realised I was there due to my laugh in the waiting room. It is an unpleasant and painful experience but I get a legal high from the gas and air (Entonox – half oxygen and half nitrous oxide). I do not know if because I have has so much of it I seem more affected by it, but I still feel high now and I left the treatment room at 11.00 a.m. British Summer Time. Another piece of wisdom I have to share is never do your grocery shopping on-line after having it. When I did I over stocked on non perishable items and my boys were ‘Where are we going to put this Mum?’. At least my next orders were very much cheaper.

Having a warped sense of humour has got me through and will continue to aid me with whatever challenges are sent my way. I was told I looked to well to be there, and that is great because I am getting stronger. For me going back to the ward, it is like going to visit family and if I can spread some happiness and cheer while I am there all the better.

Posted by: janedb | April 24, 2013

Disappointment

I returned home after being let out of hospital feeling rather low. I did not have to return till the following Tuesday when I was to have another bone marrow aspirate. Medications were finished and I was now waiting for results to tell me whether I was totally cured.

When I went to clinic on the Thursday I expected some word about being free of leukemia but I was told my bloods were fine and the result from London would be back in ten days time, although now I could leave the neutropenic diet behind as I was no longer neutropenic. I had had a salad one night when I was in with pneumonia and it caused my doctors worry so I had to promise I would not have one again until I was told I could. It was magical to eat a meal that was really fresh and not dried out.  Since that clinic I have had a large salad every lunch and I am now able to eat all the fruit I want.

It is nice to try to get back to normal but I am still waiting for the definitive all clear so really do not feel I can celebrate. I have since been back to the clinic and the result has still not come back. My dad has a bottle of champagne waiting but does not want to open it until we know for definite. I feel in limbo, deeply grateful the treatment has finished, but scared in case I need more. My case is finally unpacked as I feel I have to act as if I am cured for my boys and I am now starting the process of trying to sort out the house.

Now being on half pay I am also having to sort out benefit entitlement and get the divorce proceedings going. Since the rules on who is eligible for legal aid is changing I have got to continue with the claim I have started. It seems you fill in one form then because that changes something else you have more forms to complete. When I have finished I am going to produce a list of where to get help if you are sick or you have to leave an abusive relationship.

My boys seem to forget I have been ill and seem to think we have elves in to do the chores, but I guess they were spoilt  while I was ill by their grandparents. I now have to try to get them to help which is hard work. My energy levels are still very low and I am having to learn to rest when I have done something. Life is getting better each day and I am enjoying all the small things I missed whilst I was being treated.

I went to visit my GP to ask how to come off my antidepressant and he asked me to wait until the summer but he said I did not know how good it was to see me. He has seen every letter that is sent when I am admitted and said I had a very strong body to have got through all the complications that came my way.

My hair has grown back, it is still very short but I like it this way now. It is so easy to look after and baby fine. I still have brown marks round my eyes where the bruising was in January and get double takes sometimes, but I don’t care, I am still here.

Due to my disappointment I have not blogged for a few days, but I have now got myself together. I feel to well to be ill and for two months running my bloods have been good so I can wait for the result without fear. It is gone and it is not coming back. I am still standing.

Posted by: janedb | April 17, 2013

Pnuemonia

English: A patient is receiving a CT scan for ...

English: A patient is receiving a CT scan for cancer treatment planning. Outside the scanning room are the imaging computers that compile 2D axial slices of the patient which can give the physician a 3D understanding of the anatomy. (Photo credit: Wikipedia)

I arrived on the assessment unit shook up at being admitted again.  They were great as usual and I was cannulated with care. This time a good vein was found as I was needing antibiotics, paracetamol, and fluids via IV. Thursday night was spent on the assessment unit with me suffering rigors due to high temperatures. On Friday morning I was moved into side room 7 on Ward 39.

For a change it was a room with a view, and a balcony, but I knew if I went outside my consultants would not be happy as leukemia patients are vulnerable to chest infections. The room was more spacious than the side rooms on Ward 41 so I had some room to move in. Friday though my health took a turn for the worse and I was on half hourly obs through the day and night. At the time I did not know what was wrong with me, but staff were gowning, gloving and putting on face masks before entering the room, so I knew they though I was infectious.

I now had two IV’s one in each arm as they did not want to remove the drip whilst they put in antibiotics and paracetamol. As my blood pressure kept fluctuating from high to low I was also given an IV of medicine to regulate my blood pressure. I had no idea at the time but I had my doctors were worried and I was not far from being put in intensive care. I was also on oxygen as breathing had become very hard like I had an elephant sat on my chest.

My health was that bad they did not want to send me for the CT chest scan I needed and had it delayed. As I had been kept awake most of the night by half hourly obs I kept drifting off to sleep. My mother was shocked at the state I was in when she came as although I had been feeling off all week I hadn’t been really ill. I was not eating very much but was able to eat her homemade tuna sandwich which made her feel slightly better. Although the food is cooked in the kitchens below, it is never very pleasant. We in the Osborne Building apparently have the best catering in the hospital. I feel sorry for the other wards.  Less is spent on feeding a patient in hospital for a day than it is on a prisoner.

By evening it was decided I needed the scan for them to be sure what they were treating and would be sent down after 6.00 p.m. As it was after hours I was accompanied with a very nice male nursing assistant and a porter. The nursing assistant had to push the IV stand along and the oxygen was hooked onto the wheelchair. It was a strange convey to the CT scan. I was injected with die and various pictures were taken of my chest and abdomen as I had complained of pain.

The pictures showed I had pneumonia which filled both lungs (sometimes known as double pneumonia as it effects both lungs). I was given this information on Saturday when the scans had been viewed by the consultants.  On Saturday I was feeling a little better so the half hourly obs stopped so I could get a little more sleep. My youngest son came in with my mum and was not happy at having to gown, glove up and put a face mask on. He felt very strange and uncomfortable so they did not stay long.

Chatting to the staff later I discovered that they thought I might have Avian flu which was why they were taking the precautions until they had the viral tests back. By Sunday I had the all clear for Avian flu so the gowning up etc could stop which my sons were relieved about when they visited with my mum. It meant that I was able to open the door to the  ward to let air circulate.

On Monday more results were back and they could not find any cause for the pneumonia so it was decided I would be sent for a bronchoscopy  when I could be booked in for one. This would involve an ambulance trip from one hospital to another which would be a strange experience. The only thoughts were my children had brought it home or I had got it from myself.

A booking had been made for me to go to Glenfield hospital on Friday, so my oxygen level was cut from 4 liters to two liters  on Tuesday which made breathing harder and more tiring. A bronchoscopy could only be carried out if your breathing was reasonable. The staff kept asking if I was alright as I was not ringing the buzzer, but knowing how short staffed they were and how busy I asked for the things I needed when they came in to see me so I did not have to. Wednesday and Thursday although tired when I had a shower as I could not use oxygen I was not getting any better but not getting any worse.

Friday morning came, I was nil by mouth from midnight and feeling very scarred. I had no real idea what it would be like and knew I wanted sedation. A cannula was put in at 6.00 a.m. so the sedation could be given. An ambulance came for me at 10.00 a.m. and took me to Glenfield Hospital. Being taken as an inpatient from one hospital to another is a surreal experience. There were two men both ways, one to drive the ambulance and one to look after me. You are not allowed to walk and have to be pushed in a wheelchair. I had to keep being hooked up to oxygen, from portable cylinder to fixed in ambulance to portable again.

The staff on the ward for the bronchoscopy were friendly and looked after me well. I was taken into theater after signing the consent form. An banana tasting spray is sprayed at the back of your throat to numb it. As I was on oxygen a sponge tube with oxygen was put in my left nostril and the bronchoscopy tube was put down the right. I can understand why you are not allowed to eat for 6 hours before as it makes you want to gag. As the pneumonia was all over my lungs they had to take several washes but luckily they did not need to take a biopsy.

Saturday my oxygen was turned off as they had stopped giving me antibiotics and wanted to get me home. Moving around was very hard as I tired quickly and had to keep getting back on the bed for a rest. I was though able to go out of the side room to fetch fresh water when I needed and did not have to wait until someone to come into my room.

On Mothers Day March 10th both boys visited again. Mum brought a basket of plants in as I was not allowed flowers. She was told that they were alright to be kept in my room as they were in soil. This turned out to be incorrect and it had to go home with her the following day as I was at risk of infection from bacteria put in the air by the soil. My youngest made me a card, but my eldest brought a card and added his own verse. They really put some effort into the words they use.

On Monday I was released from hospital and given a date for a bone marrow on the 19th and a clinic visit on the 21st March. I was going home again.

Posted by: janedb | April 16, 2013

4th Cycle of Treatment

Cannula

Cannula (Photo credit: Boccaccio1)

I had the bone marrow aspirate done and was still in remission so although I kept having other medical problems the actual treatment for leukemia was still working. It seemed I was needing more treatment for complications than I was  for the leukemia. None of my friends or family could be leave the journey I had been on and it still had not ended.

My fourth round of treatment was just one IV of chemo via a vein. Due to my veins now collapsing when they tried to insert a cannula, they went for the best vein in the crook of my arm. Unfortunately this was so scarred they had to stop the infusion and find another vein as the infusion was going in so slow. They were worried that it could damage my vein and I could loose half my arm. They tried to find another vein but after several tries decided they needed to get a doctor. The doctor came one who knew my veins and she got one in my hand. The rest of the chemo went in with no problems.

I then had to take ATRA for 15 days at home. I took the anti sickness pills for the first two days then stopped as after reading the leaflet in the packet realized that these were what had made me so ill before. The complications described were the symptoms I got. I felt sick and could not each much but I felt better than I did when taking them, as I was not having rigors. I normally read all medication leaflets before taking them, but as they were given by the hospital I just took them.

I must have known that despite what they said at the hospital, that they doubted I would be in again, that problems would arise as I went out on more trips. After being in hospital and only having the shop inside to visit, I wanted to see more. I was still careful, but wanted to feel I was back to normal. Unfortunately I still suffered exhaustion if I did too much. One day I would go out and walk all day, then the next day I would be able to do very little. I was still determined not to be an invalid.

Unfortunately for me although there was less chemo going in to me I still was ill and was admitted on the evening of  a clinic appointment on the 21st February. The consultant said I was out on licence due to my neutrophil count being so low.  I had been sent home being told to take my temperature night and evening, unfortunately when I took it that night it was 38.5, so when I rang in I was told to go  straight in. The only benefit was that I was able to pack the rest of my case myself and say goodbye to my boys. I just told them I was going in as a precaution which I was. As mum had not gone home she was able to take me in then go back and get her own case.

I was admitted to the assessment unit and treated with antibiotics, though not penicillin as I was now allergic after my treatment in January. It had given me an all over very itchy rash. Getting the cannula in proved a problem and one was put in the back of my wrist, it did not go in fully as it hit a junction in the vein. It was strapped in so it could be used for the next dose. The doctor who did said I made her feel she had achieved something as it had been a very difficult shift and she had managed to cannulate a patient with very poor veins.

I spent one night on the assessment unit before I was moved to Ward 41 my second home. I was greeted like a long lost friend as I had been in so often. Nurses hugged me and told other patients you have someone nice to talk to now. I was still having temperatures but the blood cultures showed nothing so I was released on the Sunday. As my blood was not showing any infection markers I was not given oral antibiotics. I still felt ill and was eating little. I spent most of the next two days in bed. As I had to go to clinic on the Thursday I got up on the Wednesday, much to the shock of my youngest who said what are you doing up.

On the Thursday 28th we took my case with us,and I am glad I did as I was admitted from clinic. Little did I know what I now had or how ill I was to become.

Posted by: janedb | April 15, 2013

Treatment Delay

I was home after 21 days and finally pain free. I had my youngest son overjoyed to see me, but my eldest had retreated into himself. I knew seeing a death had shook him but I hoped he would talk to me.

On a visit whilst I was in he had also witnessed a cannula being removed and the vein not stopping bleeding. I had to ask mum to take him home as he looked like he was going to faint. It had happened before and I knew it needed pressure and the limb putting in the air and it would eventually stop. My low platelet count was affecting my clotting. I also made APML ladies daughter go green. I was not in pain and was laughing about the situation, the bed was covered in blood and so was my paper. I phoned him later to tell him I was fine.

It was not until I was home that I realized quite how ill I had been. I was sent home with a copy of a   letter sent to my GP and there it stated I had E-coli. My eldest son was frightened that I was going to leave him and I think scarred that he would have to go back to his father. I joked with him that after everything I had had I was like Captain Scarlet, indestructible. This made him laugh. Then I managed to convince him that if the worst happened my parents would not let their dad get hold of them. Social Services would stop my ex anyway as they were involved at the beginning. It took some time but he finally came round.

He scarred me at first as he had anorexia nervosa symptoms and was saying he was fat. He is over 6 ft and has a 30 inch waist with 33 inch legs. It took time to turn him round but I also got crafty by buying treats he likes and putting them where he could find them. He also was not drinking so I told him he was going to end up with kidney failure. He was warned because of his previous medical history he has to look of himself. I need a cow now as he drinks a pint of milk at one go. I’ve condensed this but it took me 6 weeks to turn him around.

I felt well for the first time in months which was a strange feeling and began to get out. I still chose places and times that would not be busy. On Friday 6th February I was able to go and see my youngest son’s school assembly. It was surreal as the children could not help looking at me. I had covered my head with a scarf and was wearing glasses, but my black eyes were still very visible underneath. His friend asked him if his mother was wearing glasses or had black eyes, when he answered both, she looked at him as if he was mad. His head also gave me a hug and so did a friend. His head is not a women you would expect to hug you.

At the clinic on the first Thursday after my release I was told I had had septicemia and as my blood count was not as they would like it they would be putting back my next lot of treatment. I also needed another bone marrow aspirate and was booked in for the following Tuesday. This upset me as I had been hoping to have all the treatment over with by the end of January and back at work in April. Everything was now behind schedule. What I had to remember was I was still here.

Posted by: janedb | April 14, 2013

Making Friends

Everything stops for Tea

Everything stops for Tea (Photo credit: tim ellis)

I was out on the ward and able to talk to people. The staff had become like friends and I shared many conversation with them but it was the first real time I had any coherent patients near me to talk to. First there was the lady in the bed next to me who was in due to a reaction after treatment for her lymphoma. It was a cycle for her that she would be in so many days after treatment. Then another lady came in opposite her who was eventually diagnosed with lymphoma and a lady opposite me who was diagnosed with APML like me.

The four of us would chat and were able to lift each others spirits. We became mischievous like naughty school girls particularly over getting a hot drink after 8.00 p.m.. We would ask the staff so we would not miss out and took it in turns to do this. I was able to offer advice and reassure the two newly diagnosed patients as most of the tests they were sent for I had had. If I couldn’t the other lady could, this way they were not so frightened. I did make sure that they knew my black eyes was as a result of a rare side effect and not normal. I made sure that the APML lady’s family also understood as we had the same condition.

I could advice when they had a bone marrow test to ask for the gas and air. When I was admitted the trial was closed but for APML lady this was no open. She asked whether she should go in for the trial and I told her what they had told me when I put my son into a trial, that it would not be worse for her, whichever treatment she had she would be cured, but it was to enable them to find the best treatment for future patients. She was very lucky and was put on the arsenic and thank goodness she is doing well. I keep in touch with her via email and we hope to meet up again this week.

The lady next to me was able to go home and we had a lady I had been next to before with us for a night. Although she talked to me, she did not seem to appreciate our banter across the bay, when I was released she told the others that they would die. Not a thing I would say to anyone, particularly as it could so easily be yourself. This lady was stuck with us longer than she needed to be as her husband would not pay for the car parking. The weather was bad and due to snow it took him four hours to  get her. After she had left we were told an emergency patient was on her way but was also stuck waiting for an ambulance due to the weather.

We made friends with this new arrival, she could not speak at first due to the effects of the autoimmune disease she had contracted, but she said listening to us made her feel reassured that she was in a safe place. Our bay became the place the nurses came to to talk to us all, do paper work and catch up with each other. We had many laughs and helped each other from morning to when we all decided we wanted to put lights out. Due to holidays there was not always a house keeper so  the two of us with APML were more mobile and took it in turns to get water for the other two. We helped each other by ringing the buzzer of fetching help when needed.

The other thing that helped me was being allowed off the ward for a walk to the hospital shop and back. Just half an hour off the ward gave me some space to forget everything I was going through.

It seems strange but the ten days I was with these were great fun. I was still in pain but it gave me something else to focus on. They finally decided it was best to operate to remove my ulcer and I had a bottom doctor look at my ulcer, he brought his colleagues to look, so at one point I had three men viewing my bottom. This caused great hilarity as although an ulcer can be a problem of treatment it is unusual.

They needed to get a large cannula in for the operation and I needed to have four lots of platelets before I went down so the crack team were called. These specialize in putting cannulas in difficult patients. Due to needing to be put under I was nil by mouth from 4.00 p.m. at half past 11.00 they got me some supper as I was not going down until after 9.00 a.m. next morning. Due to being nil by mouth I ended up having subcutaneous morphine injections as the pain was so bad.

I was taken down at 10.00 a.m. feeling very apprehensive as with all the things that had gone wrong for me, i always worry when they read out what could go wrong before you sign the consent form. A new cannula had to be inserted as the other had already stopped working due to the platelets. They were very good but as it was in my hand it is always sore. Other than removing the ulcer I am not sure what other investigation was done but I have not pushed the point. It is something I do not know. They sent the ulcer for tests but they came back negative.

When I woke I was on a recovery ward with a very caring nurse. I spent an hour there before I was returned to the ward. I was given more morphine whilst I was there.

Back on the ward another of the crack teams was contacted to obtain advice on the best dressings to be used on my open wound. I had the operation on Wednesday and because I became self caring for the wound I was released on the Saturday. After 21 days I was finally going home.

Posted by: janedb | April 13, 2013

The End of a Life

British nurse in nurses' station.

British nurse in nurses’ station. (Photo credit: Wikipedia)

As I have explained in previous posts January was a dark month for me in hospital. I had survived a week in a side room by reading and was now on a bay on the main ward. Although I was happy to be where I was now, what disturbed me was how the lady opposite had got sicker since she first arrived after I was admitted on the 27th December.

When she had been admitted she was walking around the ward better than I was, and was independent. Now she was sat in a chair, could not sleep and could hardly walk. To watch a person’s decline is horrendous. The poor lady developed a nose bleed which would not stop, she was offered a platelet transfer transfusion but refused. They offered her a side room but she did not want to be moved, I think she knew what was happening.

By the end of the week they had decided that there was nothing more to be done, unfortunately although the curtains were round I heard the conversation they had with her and her husband. It was not something I would ever wish to hear. There were arrangements made to try to get her home for her last days. my children were in visiting on the Sunday when my eldest and I witnessed her passing. Her curtains were shut round her. Then the rest of the wards curtains were shut whilst she was moved to a side room. After her family had visited the wards curtains again were closed whilst her body was removed to the morgue.

To witness someones slow death was something I will not forget and shook my son up. It affected him, so that I went through a difficult time with him, I think he was worried that might be me.

The bright thing about being on the ward was that I was able to talk to the ward staff whilst they went about their work. All the staff are very friendly and enjoy a chat. I believe in treating everyone the same regardless of their position. Talking about anything helps you to forget and have access to the world outside of the ward. At this point I was still confined to the ward itself.

I was still in pain and receiving IV antibiotics. The pain was getting worse as the diarrhea had not stopped, and the ulcer was growing and getting very sore. My blood was not as it should be so it was decided to wait before anything was done.

There were times of fun, being given a ride when the bed space was cleaned. The bed sides were put up, the bed was put to its highest position and your bed was moved into the middle of the bay. It gave a different view of the ward and out of the window. I also moved across from my bed space to where the lady had passed away as a sick patient needed to be in my space which could be seen from the nurses station. It was funny just to walk from one side to the other.  I asked for the chair to be changed as I did not want to sit in the chair where she had died.

I had to push what had happened out of my mind so I could sleep. The young woman who was moved into my space looked like a space man due to the oxygen tent that she was wearing on her head. She required the constant attention  of a nurse and nursing assistant. Later that night she was moved to intensive care.

I have some amazing friends but after what I had been through in October I decided I did not want anyone other than my family to see me at my worst. I know it is because I am a control freak and I know it is something I have got to stop. They asked many times to see me but I could not handle them seeing me as I was, no hair and swollen eyes. I know it would not have mattered to them, but I do not like sharing when I am feeling depressed. Being with someone in that state does not bother me, but I want to hide when I am in a black cloud.

There was a silver cloud on the horizon.

Posted by: janedb | April 12, 2013

A Week in a Side Room

English: Modern high field clinical MRI scanne...

English: Modern high field clinical MRI scanner. (3T Achieva, the product of Philips at Best, the Netherlands.) (Photo credit: Wikipedia)

5th of January was my 46th birthday, and I woke up in hospital still unable to open my left eye at all and my right eye blood shot. I knew it was not going to be an exiting birthday now I was a single parent, but I did not expect to feel so low. It was not turning another year older, but where I was, that got to me. I was cut off from my family and in case I was contagious, I was stuck in this room.

I became a voracious reader to occupy my mind and transport myself from the isolation I felt. A book of 400 pages was read in less than a day, some days I read more. I have always enjoyed books and I was able to read the books on my bookshelves from home. Mum kept bringing piles of books and taking others home. It enabled me to transport myself from my room and into the book.

Due to the state of my face I had many visitors from the staff, either to come in to say hello or look through the window in the door. I could not blame them, I knew from mum that I looked interesting, no hair and black eyes. Mum did not bring the boys in for my birthday as she did not have any idea how they would take seeing me in this state again. She was shocked at how bad I looked.

On Sunday she brought my sons in with her, and it was wonderful to see them. They had made me cards with their own verses written. They spend a great deal of time on what they write, and they are always kept. My left eye was slightly open, but it was still uncomfortable to wear glasses for a long time. I am short sighted so luckily I don’t have to wear them for reading.

The diarrhea was still happening and although on antibiotics I was not feeling better. An ulcer was starting to form near my back passage and it was difficult to get comfortable. Everything rubbed on it and I was permanently sore. I was sent for an MRI scan of the area so they could see what was happening as they felt their was a hole in my back passage that had allowed E. coli into my bloodstream.

Waiting for the scan was agony as I was sitting on a hard wheelchair and could not get comfortable, I just wanted to be back on my side in my bed. The MRI scan is not very pleasant. I had had one a few years before when I had a suspected TIA (transient ischemic attack) (mini stroke). It turned out to be just my symptoms for a migraine, I go numb down my left side and become very weak on that side. For the MRI you have to lie still in the position they want you in, on my back was the least comfortable position for me at this time. Then when it starts even though they give you headphones with your choice of music, it is incredibly loud. You are in there for over 30 minutes.

After it was over I had to wait for a porter to return me to my ward. Again siting on the wheelchair I just wanted to cry with the pain. When the porter turned up he was really kind. He was ex army and had boxed in his youth. As he pushed me back to the ward we were both laughing at the double takes done by people passing me. One man walked past the lift doors then stepped back to pass again as he could not believe what he had seen. Normally when I am off the ward or outside the hospital I cover my head with a scarf, but due to the look of my face I thought that I would go scarf less. The man must of wondered what had happened to me.

We laughed at peoples reaction to me as we passed by and he said he was envious of my black eyes. Even as a boxer he had not had a shiner like mine and that it would have been great as a youngster to go into school looking like me. We passed one of my consultants who did a double take. She was shocked to see me looking like this, she knew I was back in but had no idea how bad I looked. She said to me later that her thoughts were what have we done to her.

The MRI scan did not get the picture the consultants required and I had to go back down the following day. By this time my ulcer was formed and I had requested regular pain relief so I was more comfortable in the wheelchair. They wanted a certain shot in a particular angle so they could see what was happening.

Due to the pain I was using baby wipes when I went to the toilet as paper was to harsh and caused the ulcer to sting. I was also being given ointment to try to help the area. Nothing other than the pain killers were helping. The pain became so bad I was given oramorph (oral morphine) to help.

After a week I was considered no longer a risk to others so I was moved onto the space on the bay I had spent the New Year. I felt better for being on the main ward as I would have interaction with more people. Just being able to talk to some one helps lift your mood.

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