Friday, 26 October 2012

Good news and bad news.

Afternoon all.

Just a quick update with a mixture of good news and bad news.

In the time honoured traditon I'll give the good news first, which doesn't actually concern me, but is an update on the patient that was in the bed next to me previouslay and who as you'll know from my blogs was quite ill. He was also the inspiration that really boosted my determination to raise funds for Leukaemia and Lymphoma research.

A couple of days ago I had an email from him. He's been at home since being discharged after the last time I was him when he was looking much better. His email was to let me know he'd had the result of a scan to check on the result of his treatment which had shown that his results were good and that the chemo had worked, leaving him clear which is great news. He doesn't require further treatment and has another scan in January to check that he is still clear so I wish him all the best.

Now to the bad news which relates to my ability to go home after this course of treatment which was my hope. During the consultants rounds early yesterday I was told that unfortunately due to my blood counts being so low at the moment my immune system is at absolute rock bottom, the lowest it has ever been. This means that before I can even be considered to be allowed home my system has to recover adequately to give my body a chance against infection which is likely to take at least a couple of weeks.

This wasn't what I wanted to hear but unfortunately it's something I have to resign myself to as I cannot afford to risk picking up an infection and becoming ill as a result. A prolonged stay in hospital will mean that any infection I pick up can be treated immediately and continuous monitoring of my temperature and condition will quickly identify any problems.

I had my final lumbar puncture of this phase yesterday and spoke to one of the other consultants who has been treating me. He recognised that am showing signs of 'cabin fever' as he called it and to his credit is hoping that a days home leave can be arranged so that I can at least go home for the boys birthdays on Tuesday. I really do have to avoid any risks over the weekend and make sure I maintain my fitness to have any hope of spending the day with them on their birthday.

As disappointing as it is to face the reality of what is likely to be another two or three weeks in hospital, the glimmer of hope of being able to spend the day with the boys and Andrea on their bitrhday will hopefully make it more special for them and is something I'll try hard to make happen if I can.

As far as treatment is concerned I've had a couple of days without treatment up to my lumbar puncture yesterday, which again went without a hitch. I woke with a headache this morning but I think that was more a result or a rough nights sleep than the spinal intervention.

This morning after encountering increased difficulties finding locations for the doctors to insert cannula's, I've been for a PICC (Peripherally Inserted Central Catheter) line fitting. This is in effect a tube that has been inserted into a vein high in my left arm and passes through my veins into my chest close to my heart. This allows any intra-veinous treatment to be injected through the PICC line, and for blood samples to be taken from it. The line should last for up to a year and will save the need to continually have needles poked into me for various reasons.

The line was inserted under a local anaesthetic after first establishing the location of a good sized vein using ultrasound. I had expected to feel the 45cm tube being fed into my veins but other than the initial needle for the anaesthetic I didn't feel a thing, and was surprised when the x-ray to check the final location of the tube came up on the screen and it was already in position.

So hopefully this line will see me through the remainder of my treatment without me having to be jabbed by too many more needles, other than those for lumbar puncture and bone marrow biopsies which unfortunately can't be avoided.

Thanks for reading.

Wednesday, 24 October 2012

I'm OK everybody.

Hi all,

I know some of you are concerned about me as I haven't updated the blog for a week so I thought I ought to give you a brief update to let you know I'm still OK.

There is no doubt that this phase of treatment has hit me much harder than the previous phase and it has certainly knocked the stuffing out of me. It has left me feeling tired most of the time, nauseous and sick some of the time, and for the past three weeks I've had almost a constant headache. Consequently most of my days have been spent drifting in and out of sleep due to feeling exhausted and to help pass the days avoiding the pain or sickness I have felt at times.

My energy levels are low anyway as the chemotherapy is designed to inhibit the overall function of my bone marrow as well as attacking the cancerous cells within it. This not only slows down the production of my white cells which have been affected by the Leukaemia but also slows down the red haemaglobin cells which are vital for carrying the oxygen around my body, and the production of platelets which help my blood to clot. As a consequence during this stay in hospital, which has been two and a half weeks so far, I have had three blood transfusions (six units of blood in total), and two transfusions of a unit of platelets. I'm also due to have another unit of platelets before my final lumbar puncture tomorrow.

The stay in hospital is becoming monotonous and tiresome and on many occasions I find the highlight of a morning or afternoon is when the meal trolleys come around and I get something to eat - when I've felt up to eating that is. In between those times I've plugged in my headphones and laid back on my bed listening to music, trying to shut out the sound of what is going on around me which helps me to sleep. At times I've actually slept through the morning or afternoon snack rounds and missed out on a drink of tea, or hot chocolate, and have sometimes found the nurses struggling to wake me from a deep slumber in order to check my blood pressure and temperature when they do the obs rounds.

What keeps me going is the knowledge that for the time being I am rid of the Leukaemia and the treatment now is to make sure it doesn't come back. So whilst it's tough going I have to try and keep my chin up and keep going, for all that it is difficult on the days when I'm feeling rough and tired.

I have only a few days of this phase of treatment left and will receive my last dose of intra-veinous chemotherapy on Monday, after which I hope to be discharged later in the day so that I can be home for Tom and Sam's 11th birthday which is on Tuesday. I keep reminding the doctors each day to make sure they don't forget that as long as I'm fit enough I want to go home on Monday afternoon!

Beyond that I don't know what the next stage is. I did ask the consultant whether there might be an opportunity for a break to let my body and my senses recover before they attack me again. Unfortunately the answer was probably not much, as the strain of Leukaemia I have is very vigorous and any opportunity my body has to recover also gives the Leukaemia an opportunity to recover and reinfect me, so it doesn't look like a long break will be on the cards.

Either way I'll be grateful of a break at home even if it's only a few days, but have to face the reality that very shortly the next phase of treatment will kick in and once again my body will be punished with more chemotherapy and the like.

Things are improving though and I'm certainly not feeling as rough as I did when I first returned to hospital, when I must have looked like death warmed up. But I'm by no means as chipper as I was through the first phase of treatment when at times I felt better than before the treatment started.

At this time I'm afraid the blog will not be as regular as it was when I started, largely due to the fact that the monotony of the hospital stay gives me little to write about and that on many days I just don't feel up sitting up in bed and writing. I will try and update when I can, particularly as the milestones in my treatment are reached and passed.

All the best everyone and as always, thanks for reading.

Wednesday, 17 October 2012

A tough week or so

Hi everybody.

I know it's been some time since I last posted, which has been frankly because I haven't felt up to it or had the inclination to do so for quite some time. There is no doubt that this second course of treatment has hit me much harder than the first course did and I have certainly not been as well as I was during the first course.

In my last post I reported that despite my reservations about going back into the hospital, I took the decision myself to be admitted as I couldn't stand the agony of the journeys back and forth with a pounding headache that lasted some days afterwards.

I last posted the day after my re-admission and since then I've had a roller coaster of ups and downs, with some comparatively good days and some which have been downright bloody awful.

The early part of last week saw me recover slowly from the after effects of the chemotherapy treatment I had on the Friday before. This drug (Cyclophosphamide) is apparently renowned for making people sick. Thankfully I have to endure it only once more this Friday and the consultant has promised to review the anti-sickness regime that will be given in conjunction with the treatment. I don't think I could stand another weekend like the one a couple of weeks ago.

Fortunately by Wednesday, which was my birthday, I was feeling better, though still very rough. Andrea took the boys out of school early so that they could come and see me and I could open my birthday cards before their evening activities of football training and scouts started. It wasn't the way I'd have liked to have spent my birthday and hope we can celebrate properly as a family when I get out of hospital next.

I had another lumbar puncture on Thursday and was feeling very weak before the procedure and didn't feel up to sitting upright. The consultant said he could try with me laid on my side and had two attempts to insert the needle into my spine to get a sample of the spinal fluid. Unfortunately neither resulted in a sample being able to be drawn off and as he poked a little further on the second attempt the needle must have touched a nerve in my back and my legs shot out in agony. Fortunately I didn't kick anybody!

I elected to try sitting up and the benefit of the additional gravity resulted in the requisite sample being obtained and after the chemotherapy drug had been injected and a dressing applied, I was returned to my bed in the ward to lay stationary for the required two hours.

Apart from that the other drugs have been having an effect on my blood production which has resulted in me needing two further transfusions of two units of blood each time. The first unit was given to me on Friday 12th and went OK, though because the cannula wasn't working properly I didn't get the full unit. The second unit on the Saturday is what I believe made me violently ill that afternoon. It was the only thing that had been different to the other treatments I'd been receiving and is the only thing that I think could have brought on the sickness I had for the remainder of the day and left me feeling distinctly unwell.

I recovered slowly on the Sunday and by evening time though I'd only had a bit of weetabix for breakfast I was feeling quite a bit better. I was given some intravenous fluids overnight. By Monday my appetite had been restored and I was eating almost normally though struggling to finish meals completely.

Monday and Tuesday this week saw the last of the weekly cycle of chemotherapy drugs so I have a day off today before my next lumbar puncture tomorrow. Yesterday also saw the second transfusion of two units of blood which thankfully passed this time without incident. I took the precaution of making sure I sat up for a couple of hours after each unit had finished being transfused as I'm sure last time the blood went to my head and made me sick.

I also had another chest x-ray yesterday to check that my lungs are clear as they can often suffer from infection during the chemotherapy treatment. I haven't heard the outcome of the x-ray yet but am assuming as nobody seems to be panicking that there are no problems.

Hair loss is taking hold and since the end of my first cycle of treatment I have noticed an increasing number of hairs on the pillow when I wake each morning. When I go for a shower each day the shampoo lather is full of hair and the towel is covered when I dry my hair. It's reaching a stage where my scalp can be clearly seen through my hair and it is thinning considerably, but hasn't yet reached a stage where I'm considering shaving my head.

So there you have it. My body is now getting the battering I always anticipated but to date have not experienced. This phase of treatment is considerably more onerous than the first and is probably more akin to the way I expected to feel at the beginning of treatment. Whilst I was anxious to avoid having to return to hospital, I'm now resigned to the fact that I'm unlikely to be home until this cycle of treatment is over which is another two weeks.

However, I persevere with it in the knowledge that strictly speaking my Leukaemia is in remission and the work that is now being done is to keep it from coming back. At some point in the future the medical team will make a risk assessment as to the method to achieve the best outcome from my treatment and will decide whether to put me on maintenance therapy or go for transplant. Sadly the test results from my sister showed that she wasn't a match, though hopefully should transplant be the preferred option, one can still be found from the bone marrow donor register.

As a subtle reminder, the fundraising continues through my JustGiving page and thanks to the generous donations so far I've jumped to 3% of my target already.

The list of people wanting to join the trip to Snowdon grows and I'm looking at creating a JustGiving team so that our combined fundraising efforts can achieve the £10,000 goal and help the scientists continue their valuable research into curing this type of disease for more people.

Thanks for reading and hopefully I'll update sooner next time.

Monday, 8 October 2012

The last few days.

Hi all.

I know the blog has been conspicuous by it's absence and unsurprisingly people are wondering what's going on. The reason is that the past few days have been quite eventful and frankly I haven't felt well enough over the past couple of days to even fire up the laptop and tax my brain by writing.

My last blog indicated that I'd been back to the hospital on Wednesday for my bone marrow biopsy and that it went well. It is this procedure that provides the samples to identify whether my bone marrow and the Leukaemia within it is responding to the chemotherapy.

My trepidation in my last blog was over my return on Thursday as I really didn't want to be admitted as an inpatient again. Thankfully it was short lived and I was actually given the choice once the hospital were satisfied that my treatment could proceed. I elected not to be admitted and travel each day, but as subsequent events will show perhaps my confidence was higher than it should have been.

So my treatment on Thursday was the lumbar puncture, which involved the drawing of some spinal fluid and injection of chemotherapy drugs direct into my spinal sack. This was the second time I'd had this procedure but I hadn't heard so far what the results were of the samples that had been taken previously. The sample indicates whether my Leukaemia has spread to my central nervous system and when I asked the consultant he was pleased to report that the previous sample had been clear. This was of course good news.

Andrea was with me for the day and after laying motionless for two hours after the procedure, to allow the chemotherapy to track up and down my spinal chord, we were able to leave and go home.

That evening I felt fine and even managed to go to watch Sam at his Rugby training.

On Friday morning though I woke with a mild headache, which I'd had following the previous lumbar puncture, so I took a couple of paracetamol and thought nothing of it as I drove myself to the hospital again that morning.

The treatment on Friday involved more chemotherapy with a different drug to my previous cycles (Cyclophosphamide). First though I was on a saline drip for 4 hours to hydrate me. I left the hospital late in the afternoon having first called at the Pharmacy to collect more tablets (Mercaptopurine) which were due to start on Saturday for the next 28 days.

By this stage I was starting to feel unwell and had a very uncomfortable journey home, particularly as it was late on a Friday so rather busy on the roads. I was in a cold sweat and my head was pounding.

When I reached home I went immediately upstairs for a lay down and within seconds felt sick, promptly rushing to the toilet and vomiting hard. I didn't get up again that evening but wasn't sick again.

On Saturday morning I still felt ill, with a banging head and ringing ears. I didn't feel sick until later and managed some bacon and scrambled egg for breakfast. I spent much of the day laid on the sofa sleeping until late in the day I had to return to the hospital for my next chemotheraphy treatment, again another new drug (Cytarabine). I was in no fit state to drive myself and so Andrea drove me back to Leicester and the boys came with us.

When we arrived at the day unit apparently I was an awful colour and as I sat in the chair the consultant was called. When he arrived he listened to my symptoms and reported that I was ticking all the boxes to be readmitted.

He was happy for me to go home though after my treatment but ultimately it was my decision.

Before he left though he gave me more good news with the initial feedback from my bone marrow biopsy, which showed that the Leukemia had gone from my bone marrow and that the chemotherapy was evidently working. The trick now wil be making sure it doesn't come back so there is still a lot of treatment to undergo and ultimately a bone marrow transplant is still a possibility as the best solution of preventing the disease returning.

Because there was only one nurse on duty in the day unit we had to move down a floor to the assessment unit and I was confident that I could make it under my own steam. We made it in the lift to the next floor but I felt shocking as we arrived and had to sit down in the lift lobby as the nurse went to get a wheelchair and a vomit bowl. She made it back just in time and I was profoundly sick!

We finally made it to the assessment unit and after a short wait got my treatment. By the time we left I was feeling better and made it back to the car on foot, but the journey back home, not helped by the football traffic that was now leaving, was punishing once again.

I spent the evening on the sofa watching Leeds Rhinos triumph again as Super League Champions for the sixth time and went to bed afterwards.

On Sunday I'd hoped to go and watch Sam play in his first Rugby festival of the season but there wasn't a prayer of being there in my condition. I managed to arrange to have him picked up by his coaches and off he went alone. Apparently he and his team played really well and they advanced to the final to be beaten by the only team that had beaten them all day. It sounds like I missed a great team performance.

Before Sam got home we had to leave for the hospital again but this time I decided that I couldn't face the journey there and back and elected to swallow my pride and rang the hospital beforehand to see if they would admit me. They confirmed they would so I made sure I had everything I needed to stay in hospital once again.

The journey back was agony for me. My head was absolutely pounding and I felt every bump and jolt of the car as we made our way up the motorway. When we arrived at the hospital I collected myself as Andrea went to find a wheelchair to get me into the building. The rear steering of the chair almost defeated her though and pushing my bulk was an experience for poor Andrea!

It was such a relief to get up to the ward and into a waiting bed, and after a wait of about half an hour we got confirmation that I could stay, which allowed Andrea and Tom to go home.

Since my admission I've been in bed almost constantly and not having drunk or eaten much since Friday I've been on a saline drip for about 16 hours so far to keep my fluids up. I was given an antibiotic yesterday which it turned out I was allergic to and had a reaction which made me tingle all over, burn up with a temperature and also made me vomit. Thankfully I've been OK since and they won't be giving me that again!

So despite not wanting to be here a few days ago I've now decided this is the best place for me. I couldn't have stood the daily round trip of eighty miles in the state I was in and being here means they can keep a closer eye on me.

So far today I'm feeling better and managed a Weetabix for breakfast and have been able to drink some water, hot chocolate and juices so hopefully the sickness and nausea has gone. I'm still feeling dizzy when I stand and so am spending most of my time laid in bed resting.

So things are starting to take their toll and the road is getting rougher as I always thought it would. But the positive news I've had with the results for the lumbar puncture and the bone marrow biopsy which indicate my treatment appears to be working are keeping my spirits up and I'm keeping fighting as I have since the start.

The blogs may not be so regular over the coming days but I'll try to give updates as and when I can.

Thanks for reading.

Wednesday, 3 October 2012

Frustration today!

I didn't write a blog yesterday, largely because there wasn't much to report. I spent most of the day(except for a short spell at Franklins Gardens watching Northampton Saints training) snoozing and generally had another lazy day.

Today has been different though and I've been back to the hospital for my bone marrow biopsy. I've held off writing until now though as I returned from hospital incredibly frustrated and actually quite angry. Consequently I've had to calm down a bit before I write this.

The bone marrow biopsy went well and was not too painful in the end as it was just the extract of some of my bone marrow from my hip bone using a big needle under a local anaesthetic. Fortunately it didn't involve the very painful removal of a bone section as my first experience of a biopsy had to enable my diagnosis.

Before my biopsy though I saw one of the doctors who told me I needed to go for a blood test to see how things were looking. I duly went down to the phlebotomist and after my biopsy had been carried out (by about 10am) decided to hang on to see the doctor to await the outcome of my blood test.

I finally got to see her about half past twelve and she told me that the blood tests were very borderline as to whether or not I'd be able to recommence my treatment tomorrow. Apparently my Neutrophil count was 0.78 and has to be above 0.75, so was just above where it needed to be. Being so borderline they were unable to commit to starting my next phase of chemotherapy tomorrow.

So I have to go back for another blood test tomorrow and don't know until then whether I'll start tomorrow or not.

On top of that for whatever reason the hospital 'chooses' to start cycles of chemotherapy on a Thursday, which means that the five days of treatment have to be carried out over a weekend. Because the day unit is closed over a weekend this would mean that to receive the treatment intravenously I would have to be admitted to the hospital again.

There is a possible solution in that the drug that I have to take over the weekend can also be injected into my belly, which I know other patients have apparently done, and which I have indicated that I am willing to do. This was discussed with the consultant on Monday before I left but as yet no decision has apparently been made.

So tomorrow I have to leave early in the morning to get to Leicester for 9am for a blood test that will tell me whether or not I am starting treatment or not, which means Andrea has to take me as I don't know whether I'm coming back or not.

I feel so frustrated as it's not just popping round the corner to the hospital - it's a 70 mile round trip, and is disruptive to everyone around me.

I'm also frustrated as there is a way out of me having to go back in hospital for the next four weekends, which I value so much, because a decision can't be made as to whether I can inject the drugs myself or have to have them intravenously.

And finally I'm frustrated because having taken so much care whilst I've been at home to avoid picking up infections, the ward I am staying in has a number of people who have vomiting bugs, diarrhoea and chest infections and I have to share toilet facilities with them, which have often been left soiled. I feel more at risk of picking an infection up in the hospital than I do at home.

Throughout this treatment I have felt well whilst I've seen many around me who do genuinely have a need to be in hospital. I'd rather be at home and let the hospital use its beds for people that need them.

So tomorrow could be an interesting day when I get to see the consultant and I do intend to make my feelings plainly known. I know they have my treatment at the core of their thoughts but I hope they don't lose sight of my own feelings as it is my body and my life they are tinkering with.

Thanks for reading.

Monday, 1 October 2012

Home again.

Evening all.

My first course of chemotherapy treatment is now complete and with things looking reasonable as far as my blood counts are concerned I've been allowed home again.

I'll keep this short today as I am feeling very tired, hence the late hour of this post. I got home just in time for the boys to get home from school and after a quick hug I've been to bed for a sleep. I think the last few nights restlessness and lack of sleep have finally caught up with me and last night in particular was no exception.

Unfortunately one of the older guys in the bed opposite me was struggling last night and going up to midnight had a constant stream of specialists in attendance to assist with his breathing primarily. This resulted in just after midnight him being put on a CPAP (Continuous Positive Airway Pressure) machine which was extremely noisy.

The constant disruption and the noise from the CPAP meant that I didn't have a chance to get to sleep. Relief (for me at least) came about 1am when they decided to move the patient to one of the bays nearer the nurses station to make observation easier.

The patient has the same type of Leukaemia as me so once again it's a reminder of how lucky I've been so far, but also how quickly things can turn around if I pick up an infection. I enquired how he was this morning and whilst he's still poorly he's stable. I hope he's ok and my thoughts go out to him and his family.

I finally managed to get some sleep but woke a little later to the sound of the patient in the next bed snoring like a pig. I've never heard snoring like it! Needless to say that didn't help either and I was awake for some time until he finally shifted position and things were a little quieter.

The consultant came round mid morning and confirmed that I could go home. The plan is that I was due to go back for my bone marrow biopsy on Wednesday, but as the list for Wednesday is full I await a phone call to confirm when this will be.

I start my next cycle of chemotherapy on Thursday but this is then followed by four days of follow up drugs which they currently plan to be administered by IV. This would mean that I'd have to be in hospital every weekend for the next 4 weeks which I found really disappointing. Discussing this with the consultant, she said that there is an option to take the drug as an injection into the stomach, and if I was happy to do this myself they might be able to let me do this at home. I'd be much happier doing that and it would free up my weekends so I'm hoping they agree to let me go down that route.

That will do for me tonight. Thanks as always for reading.