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.

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.

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.

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.

Phase 1 treatment complete.

Afternoon all.

They say Sunday is a day of rest, so I've been resting. Actually I've been very lazy today and have spent much of the day snoozing between meals and my treatment. I guess I have to catch up on the sleep I've been losing at night somehow.

This afternoon saw the final cycle of Rituximab antibody treatment, which was the last treatment I was due to have in this first induction phase of my chemotherapy treatment. All being well if my temperature stays stable overnight I'll be going home tomorrow for a spell.

When I do get home, my bone marrow needs time to recuperate and start doing it's normal job before I have another bone marrow biopsy. That will show how my Leukaemia has reacted to the treatment and what extent if any remains. Even if all of the Leukaemia is gone, which is what I hope, I will still have to go through a second phase of chemotherapy to make sure it doesn't return.

I'll know more about the timing of everything after tomorrow morning's consultants ward round, after which I can hopefully go home for a break.

A few of you may be wondering how my friend from the next bed during my previous stay was. I'm pleased to say I caught up with him a couple of times during the week last week and each time he looked better. I saw him on Wednesday when I came in as an outpatient and again on Friday when I was re-admitted for the weekend. On Friday he was discharged and allowed to go home for a rest which he looked like he was looking forward to. His infection is clearing up and apart from still having a sore mouth he looked like a new person.

I know he's following this blog and will keep in touch by email or phone. He has also vowed to do the Snowdon climb with me so we have a joint goal. It would be good to summit the peak side by side with him to mark the end of our respective journeys to recover from our illnesses, and as between us we cover the Leukaemia and Lymphoma parts of my chosen charity it would be a fitting cause.

Keep up the fight Dean - we've got a mountain to climb together!

My sincere thanks go to those that have started the ball rolling on the fund raising side and made donations to my JustGiving page. Just a sneaky reminder that the address if you are able and wish to donate is justgiving.com/dieseldrinkersnowdon, or you can also donate £5 just by sending a text from your mobile phone by texting RTOR66 to 70070.

There's not much more to say today. I'm waiting to call Andrea soon and find out how Sam got on in his first Rugby games today, so I'll see you all tomorrow.

Thanks again for reading.

Fund Raising Begins - JustGiving Page

Afternoon all,

I decided that whilst I was sat here today without much to do I might as well get the ball rolling on the fund raising front so I've spent part of the day creating a JustGiving page. More about that below.

I slipped up last night and felt tired when I went to bed so I didn't bother with a sleeping tablet at bedtime. That was a mistake and once again, as I had at home, I woke about 3am and couldn't back get to sleep. Largely the reason was silly things spinning around in my mind. I won't make the same mistake again tonight and will make sure I have a tablet. Thankfully I've managed to catch a short doze this afternoon and hopefully caught up a bit of sleep.

I had visitors this morning in the form of my parents, my sister and one of my nieces, Ellie.

Suzanne, my sister, went for the blood test yesterday that is required to see if she is a match to be a Bone Marrow donor, and bore the bruises to show it. I know she was being sarcastic when she said the Vampires had been after her for her blood, but looking at her arm it looked like she had been attacked and bitten!

Ah well I'm worth it I'm sure.

With such a crowd we thought it best to head out of the ward and went to the main hospital restaurant for a drink, snack and a quick catch up. As always it was good to see them all and it's the first time I've seen Suzanne since this all started.

I was just in the process of setting up the beginnings of my JustGiving page when they arrived so now is the time to expand on that.

As I've said in my previous blogs, I have been inspired to do something positive and raise some money for the charity Leukaemia and Lymphoma Research, which is the only UK charity solely dedicated to research into blood cancers, including Leukaemia, Lymphoma and Myeloma. It is therefore of particular relevance to me and my fellow patients here in hospital. Anyone can get a blood cancer at any age. Around 30,000 people, from babies to grandparents, are diagnosed with blood cancer every year in the UK.

The charities web site contains some fantastic information and has been of real use to me in finding out more about my condition. They also have some high profile fundraisers such as Ian Botham, who's done his various walks to support them, and the 'Pedal for Petrov' campaign currently has a high profile as Aston Villa player Stiliyan Petrov fights his own battle against Leukaemia.

But despite this, huge amounts of money are required to fund valuable research each year and the charity indicates that it needs around £20million each year to maintain the life saving research the charity funds.

If I can raise anything towards that I feel it's something I have to do to give something back to the medical teams that have cared for me, the researchers and scientists that have developed the treatments that are hopefully curing me, and to the patients who in many cases suffer considerably more than me. I feel fortunate enough to have maintained my otherwise relatively normal health through the first phase of my treatment whilst I've seen others who have fared less well and have had a considerably rougher road to travel along.

I've said before that my main fund raising aim is to conclude my 'Road to Recovery' by making the climb up Snowdon in North Wales and that is still my goal. I am in the process of planning for this to happen during the summer of 2013 when the weather will hopefully be agreeable and my fitness will be restored adequately to make the climb.

Already I've had volunteers from all quarters of family, friends and colleagues and hope that the walk can attract large numbers of people, all individually sponsored or as part of my 'team' to maximise the funds we can raise. Anyone that wants to tag along is more than welcome and as plans develop I will convey them through this blog.

But summer 2013 is a long way off and by creating a JustGiving page now I can allow people to start making donations. Through this blog and other media I can hopefully spread the word and raise some money ahead of the climb up Snowdon and have set myself a large but hopefully attainable overall goal of £10,000. With the sponsorship I hope to gain for the climb I hope I can smash that target and raise much more but let's see how things go.

So the fund raising growth hopefully starts here and will climb steadily to a crescendo when the time of the climb approaches and the event itself takes me to, and hopefully far in excess of my goal.

So my plea to all reading is therefore to please start to spread the word amongst family and friends and urge people that if they are willing to donate to please do so, great or small, for the sake of people like me and my fellow patients. Every penny counts and by using JustGiving as as UK taxpayer the Government has to release Gift Aid from it's claws which means the charity gets a bit more than your donation alone.

So the address if you are able and wish to donate is justgiving.com/dieseldrinkersnowdon.

To make things even easier, you can also donate £5 just by sending a text from your mobile phone. Simply text RTOR66 to 70070.

Please help me make a difference and I thank you from my heart in advance.

I had a day off.

Afternoon everybody.

I decided to have a day off from writing the blog yesterday, largely because I couldn't think of much to write and didn't have a great deal planned for the day anyway. But I'm back now with a quick update which I'm writing from the day unit back at Leicester.

I'm back here today for my the final series of treatments in the first phase of my induction therapy, and as I have to have anti-fungal and chemotherapy treatment today and my final chemo on Sunday I'm being admitted back to the Haematology ward for the weekend. All being well I'll be discharged on Sunday afternoon after my final chemo is administered.

Beyond that I guess at some point next week I'll be having another bone marrow biopsy (hopefully without the bone section) which will give the first indication of what effect the treatment is having. After that the medical team will plan the next phase of my treatment.

I'm hoping that the next phase can be carried out as the end of this has and be done by me visiting the day clinic, even if it has to be every day. Throughout my treatment I've had no adverse reactions to any of the treatments that have been administered to me other than the occasional mild headache and a metallic taste in my mouth. I've felt guilty occupying space in a hospital bed and I'm hoping the hospital can make better use of the beds by me not being there.

I'll take the advice of the medical team as ever and if they insist I will spend my time in hospital, but I'm being sensible about what I do, who I see and where I go whilst I'm at home so am doing my best to avoid picking up an infection.

Things are progressing as far as checking my sisters compatibility for a bone marrow donation is concerned. She had a letter earlier in the week from the hospital (the Vampires as she calls them) requesting a blood test. She's going for the blood test today at her doctors, but wasn't happy about the rather surprising standard arrangement to 'drop the samples in the post' along with everyones birthdays cards and bill payments afterwards. Thankfully my dad has stepped into the breach and is driving her and her blood down to the hospital on Saturday, which will also give me an opportunity to see her, my nieces (Ashleigh and Ellie) and my parents.

Andrea also has visitors this weekend, as her sister in law, Lisa and our niece Charlotte are coming to stay on Saturday night. Charlotte, with her brother Freddie were the masterminds behind 'Operation Yum-Yum' recently whilst I was on the Bone Marrow Unit, with the basket of goodies delivered by Lisa and Paul which were greatly appreciated. Freddie is playing football at the weekend so will miss out on a trip to Northampton.

I managed to snatch a look at Sam's Rugby training last night and was really impressed at the way all of the boys are performing. Some hard tackling, strong running and good technique was on display from all that were there and I think this season looks very promising. I hope I'm able to catch more of it.

Tom has no football this week thanks to an odd number of teams in his league so will have to endure watching his brother play Rugby on Sunday. At least he'll have his cousin Charlotte for company and no doubt the club's tuck shop will benefit from their custom.

I'll be torn between two Rugby games tonight as Leeds Rhinos play Wigan in their bid for a place in the Rugby League Grand Final, and Northampton Saints are out for their fifth win out of five against Wasps. I'll be tracking both games as best I can and best of luck to both teams!

Finally, I think hair loss might be starting. Each morning as I shower I've noticed a higher than normal number of hairs seem to be leaving my head, though at the moment to look at me the loss is not detectable. It's not something I'm worried about anyway and if it's the only side effect I suffer I think I will have got away very lightly.

Many thanks for reading.