Friday, 23 November 2012

The next stage.

Hi everyone.

I've been at home since my last blog so there hasn't been much to update until now, but after yesterdays visit to the hospital for a blood test and meeting with the consultant I know what the immediate future holds as far as treatment is concerned. I also have news regarding the possible conclusion to my journey.

Since leaving hospital last Tuesday I've been back for blood tests last Thursday and this Tuesday and Thursday. Each time I've been given an update on my blood counts which have been steadily improving. As mentioned yesterday's visit also consisted of a longer discussion with the consultant which confirmed that my white cells, particularly my Neutrophils, (which are the white cells which fight infection) have improved to a level which are at the lower level of normal.

My red cell counts are not growing as quickly and I'm a little anaemic at the moment, but the counts are improving nevertheless. Being anaemic means doing anything which requires exertion saps my energy quickly and I seem to feel this most in my legs. Climbing stairs or walking even a short distance soon has me out of breath and my head pounding as my weak blood pumps around my body. Whilst I'm in hospital the normal solution is a transfusion and when I return it is still a possibility, even though my own system is coming back to life.

So my bone marrow is slowly recovering which is good news, though it has taken quite some time.

The induction phase of my treatment is therefore over and as the consultant said yesterday its usually easy to get patients into remission during this stage, as they have with me. The trick is keeping them there and making sure that the Leukaemia doesn't come back.

The next phase of the treatment was therefore explained to me yesterday and I was presented with a new plan for the next 28 days of treatment. Fortunately the treatment doesn't start until next Monday so I do at least have the weekend at home.

So when I return on Monday, subject to satisfactory results from blood and urine tests I will be put on a drip to hydrate me, which is to reduce the risk of damage to my liver. After this I will be given Methatrexate, which is the chemotherapy drug that I have previously had injected into my spine. This time it will be delivered intravenously over a long period. By all accounts the possible side effects are a sore mouth, sickness and diarrhoea, so I'm hoping I don't suffer too much.

At the end of the delivery of the Methatrexate, which I seem to remember is a 24 hour period, a form of folic acid is given to counteract the effects and help settle things down.

The other procedure that was planned for Monday was the installation of a new PICC line in my arm to make administration of drugs and taking blood sample easier. I'd had one installed previously but due to an infection on the skin surrounding the entry site it was taken out about a week after installation. This was probably due to my low neutrophil count at the time. However I got a surprise call from the hospital this morning to say that the list for Monday was full but that they'd had a cancellation on the list for this afternoon and could I make it to have my line installed today. Fortunately I could, so I've been this afternoon ad now have a fresh line in my arm ready for Monday.

The indications are that if treatment is started on Monday, by Thursday I should be well enough to go home again. I'll then have a full week off without treatment and on day 15 the process with the Methatrexate and folic acid is repeated.

In effect that's it for this next phase of treatment which doesn't sound much but could potentially have two short periods of discomfort and illness after each administration of Methatrexate. All being well it will also be over in time for Christmas so that I can have a break to celebrate with my family over the holiday period.

The consultant also gave me some good news yesterday by indicating that a donor has been located for a bone marrow transplant, which will give me the best chance of cure and survival. The likelihood is that the transplant process will start early in the new year and will probably mean an extended stay (probably 2-3 months) in hospital following transplant whilst the graft hopefully occurs and my system starts to recover. I'll know more about the full process when the time gets nearer.

I'll report next week on how the treatment is progressing (providing I feel up to it).

Finally I want to give a mention to a brave (possibly mad) lady that is taking part in a gruelling 8 mile cross country run over land normally used to test army vehicles. The event is suitably titled 'The Grim Challenge' and takes place in a couple of weeks time at the beginning of December near Aldershot.

Nicole Baynton is the lady in question and is a good friend I have made through my association with Towcestrians Rugby Club, where our sons play rugby together. She contacted me whilst I was in hospital recently to ask whether she could help raise funds for my preferred charity, Leukaemia and Lymphoma Research. I'm delighted to say she has my full support and send my best wishes with her for successfully completing the run. I'll have a Guinness or two with her down at the Tows club sometime in the future to celebrate.

Nicole has a JustGiving page, so my plea is for anyone that can to join me in my support of her on this run, for which I'd be very grateful. Nicole's page can be found here (http://www.justgiving.com/Nicole-Lisa-Helen).

All the best to everybody and thanks for reading.

Wednesday, 14 November 2012

Home again.

Afternoon all.

I'll start with some good news and can report that as of last night I was allowed home for a few days after my blood counts had recovered sufficiently to reduce my risk of infection. They are still very low though so whilst I'm home I need to be sensible and take care in everything I do.

At this stage I don't know how long this respite will last and it is dependant on the next stage of treatment, more of which will be revealed tomorrow when I return to the hospital for a blood test and meeting with the consultants.

From the discussions I've had so far it looks like there are two options for the next stage. The first is to have a weekly treatment of Methatrexate, which is what I've been having injected into my spine. This time it will be injected intravenously to keep the protection up against the return of the leukaemia until such time as a bone marrow donor can be found.

The second option is to go directly into transplant and the hospital were hoping for some news over a possible match from the bone marrow registry before I return on Thursday.

Personally I'm hoping that transplant can be held off until after Christmas as it will be a long recovery period afterwards and I really don't want to be in hospital over Christmas.

Either way it's likely that I won't restart treatment until a week on Monday since my body needs adequate time for my bone marrow to recover and my blood counts to grow to an acceptable level before it gets knocked back again. This should give me a reasonable break to spend at home with my family.

Since my last blog I've had two more blood transfusions and two more units of platelets. This brings my total to 15 units of blood and about 5 of platelets. To anyone that is a blood donor, many thanks. During treatment like I'm going through and my fellow patients, donated blood is vital in ensuring that we can survive whilst our own blood manufacturing systems are not functioning.

Transfusion of platelets has previously been uneventful but the middle of last week I had a unit which brought me out in a severe rash, almost like a nettle rash all over my body, which was agonisingly itchy and was only brought under control by the administration of some intravenous Piriton. I still had to put up with the itching for a painful couple of hours until the rash finally subsided. Since then I've had another unit of platelets which was preceded with a precautionary dose of Piriton.

I've also previously had a mild reaction during a transfusion of blood, but last Friday I had a much more severe reaction. This started out about 6pm as strong shivering which lasted about two hours in total. The blood transfusion was stopped about half an hour after the shivering started and again I needed to be given Piriton to deal with the allergic reaction. This could only be done after my cannula had been replaced as the one used for the blood had started to leak. About half to three quarters of an hour after the Piriton was given the shivering finally stopped, but my then temperature shot up  to 38.7 degrees and I was burning up. I was given Paracetemol at about 10pm to deal with my temperature and by 1am the next morning thankfully things had settled down and were back to normal.

I had my final unit of blood and a unit of platelets yesterday before being discharged, both preceded with a dose of Piriton. A blood test that was taken about an hour after the transfusions had finished should give the medical staff an indication as to whether I'm developing a resistance to transfusion, since these adverse reactions seem to be worsening.

I should know more about my treatment so far and the next steps after seeing the consultants tomorrow and will update you all via my next blog.

For the time being though I'll be making the most of my time at home. There are a few jobs that need doing in the garden and in my frail state it's time for my boys to step up and do some work, supervised by me, to get the garden ready for winter. So, though they don't know it yet, I have a weekends gardening planned for them!

Thats all for now so as always, thanks for reading.

Thursday, 1 November 2012

I'm still in hospital.

Afternoon all.

As expected at the end of last week, I'm still in hospital due to my neutrophil count being low. In fact my count on Tuesday, when I hoped to go home for the boys birthday was 0.00 - absolute zero meaning my immune system was non existent. In addition to that my temperature has 'spiked' a couple of times over the weekend and increased for short periods up to at the most 37.8 degrees, which is an indication of a potential infection.

On Monday evening I was told that a bed had become available in the Bone Marrow Transplant unit, where I spent the early days of my treatment, and I was moved back down there about 8pm. Its good to have more space and a room of my own with the en-suite and widescreen TV, but I do miss the company of the patients around me. Since arriving on Monday I have been told that because my count is so low I am confined to my room since its filtered, positive pressure ventilation will reduce the risk of me being infected from the less sterile areas outside my room.

All of this unfortunately meant that much to my disappointment, I wasn't able to go home for the day and spend some time at home with the boys and Andrea. They did come in to the hospital mid morning and spent a couple of hours here. They brought their birthday cards and presents with them and opened them in my hospital room. I suppose there is an advantage to being back in the bone marrow unit in that at least we can have some private time together as a family, which the flimsy curtains around a bedded bay did not afford.

The boys both got a mobile phone each which they've been nattering about for years. Andrea finally gave in, but at least its gives us some comfort that they can keep in touch remotely whilst they are out - as long as they dont lose them! They also got a variety of presents and lots of money, cheques and vouchers so I've no doubt they'll be planning what to spend that on in no time.

My treatment for this phase has now finished completely. The last intra-veinous chemotherapy was given on Monday and I completed the chemotherapy tablets yesterday. So now my bone marrow has a chance to recover its function and already my neutrophil count is growing - up to 0.1 yesterday.

I'm on anti-biotics at the moment to rid my body of the infection that has generated the temperature spikes, and was detected in my blood samples. This also appears to be working such that my temperature has been more consistent today and my headache that has been almost constant for the past month is also easing.

My appetite has been waning a little over the past few days but the dietitian has been to see me today and indicated that as I'm managing to generally maintain my weight, there is no undue cause for alarm.

The doctors visit this morning indicated that I'm more or less certain to spend the weekend here but that as long as my counts continue to increase satisfactorily and my body responds to the anti-biotics  there is some potential that I might be allowed home sometime next week for a period of recuperation.

I've been prescribed another two units of blood, which will take my total to ten, and expect to receive these either later today or tomorrow. These usually give me a boost of energy for a short period but hopefully as my bone marrow recovers it will pick up the production of my own blood and I won't need too many other transfusions for the time being at least.

I live in hope then and will tolerate my period of solitary confinement as best I can, as I know that reducing my exposure to the risk of infection will hopefully speed up my recovery and the chances of getting home for a break.

On Monday I managed to spend some time editing my book to incoroprate the changes I picked up during my proof reading, and got about half way through. I hope to use my remaining time in the bone marrow unit to complete this exercise and hopefully take the book to the next stage towards publishing.

Thanks again for reading.

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.

Sunday, 30 September 2012

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.

Saturday, 29 September 2012

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.

Friday, 28 September 2012

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.

Wednesday, 26 September 2012

Sleepless nights.

Morning all,

Here I am back in Leicester but today just as an outpatient. I was up early so made my way to the hospital so that I can hopefully get my treatment over and done with and back home for lunchtime, fingers crossed. So far I've had my blood samples taken and a cannula fitted so they can bring the Ambizone as soon as they like and get cracking as far as I'm concerned.

You would have thought being back at home in my own bed I would be sleeping well and possibly better than I did in hospital, but unfortunately over the past couple of nights that hasn't been the case.

On Monday night I went to bed about 10 and woke at 12.30 and didn't get back to sleep again before Andrea and I got up to check on Max at about 6am.

Last night I was feeling tired and went to bed about 11.30, thinking a late night would help me sleep. Unfortunately I woke up again about 3.30 and laid awake for a couple of hours, managing to drop off again for a while later and finally getting up at 7am.

The strange thing is despite the lack of sleep I don't feel tired though I guess I'll have a snooze this afternoon when I get back home.

Whilst I've been in hospital I've been having a sleeping tablet each night to help me sleep, and it seems to have been working. I've had some good rest whilst I was in the ward. After Monday night I went to the Doctors yesterday and asked for a repeat prescription of the tablets the hospital had been prescribing and awaited the decision. The Doctor called me late in the afternoon and ran through the reservations he had about prescribing the particular type of tablet, largely because I can become dependant on them.

I assured him that rather than taking them every night I will alternate, so hopefully I will get some good nights sleep. Perhaps when things settle back into a routine I'll have less on my mind and less to think about when I wake up, which seems to be the problem. I'm waking up and thinking about all sorts of silly, unnecessary things which distract my mind and stop me going to sleep.

I'll collect the prescription later and maybe try a tablet tonight to see whether it helps.

Following my post about mischievous Max yesterday he was as good as gold last night. Once again he was given the free run of downstairs (we have a stair gate to prevent him coming upstairs) and once again he made himself comfortable on the sofa to sleep curled up on the remaining cushions.

The only peep I heard out of him was just after 5am and when I went downstairs to check on him he'd knocked the cushions off both sofa's and was curled up on two of them on the floor. I put the cushions back in position again and he made himself comfortable, had a tummy tickle and settled down again.

I think we've cured him and the misdemeanour with the cushion yesterday could have been down to his frustration at the cushions falling off the sofa and him not being able to get comfortable, as there was no chewing last night.

As the photo below testifies, he likes being comfortable and cuddled and this was this mornings reward for being a good dog last night.


It looks like things are moving to get my Ambizone started and things are quiet in the clinic here so hopefully I'll be over and done with by lunchtime and on my way home again.

See you all soon and thanks as always for reading.

Tuesday, 25 September 2012

Mans best friend.

Afternoon everybody.

I'm a bit late today as I've had a lazy day at home. Mind you I managed to wash the car this morning though it made me a bit breathless due to my red blood cell count being low at the moment. My white cell count is currently within the normal range so my risk of infection is low, which is why I guess they let me come home.

Today I'll tell you more about the member of the family that has had a couple of mentions already, our Labrador Max. I promised to detail his slow cooker/chili escapade that he got up to the other night and forgot all about it, so today I'll spill the beans.

But first a quick update on the plan for my treatment over the next few days.

As promised I was allowed to come home yesterday and despite trying to disguise a trip to the hospital as a surprise treat for me from Andrea and the boys, Tom saw straight though the plan and worked out immediately that I was coming home again. He's a smart cookie that kid!

So after a couple of treatments in the afternoon which had me on the drip for the best part of three and a half hours, the boys and Andrea arrived towards the end and after polishing off my tea I was free to leave. We got home just after 8 o'clock last night and were greeted by one very excited dog.

I have three days remaining to complete the first phase of the treatment and have to attend the hospital on Wednesday, Friday and Sunday to get the last doses of the anti-fungal and chemotherapy treatments. Wednesday will be done on the day clinic as an outpatient so I can drive myself to Leicester and back for the day. But because the day clinic is closed over the weekend it means that when I report on Friday I'll be admitted to the ward for the weekend to receive my treatment on Sunday. This does mean I'll be in hospital again over the weekend but all being well I should be able to come home again on Sunday evening.

After that I'll be due another Bone Marrow biopsy to see how the treatment is working and dependant on that the timing of the next phase of treatment (which is a repeat of that I've just had) will be decided. Hopefully I'll get a short break to allow me to celebrate my birthday at home on the 10th October.

Anyway, back to the subject of todays blog, man's best friend - in my case Max.

Max is our yellow Labrador and he's about 17 months old now. He's a stunning looking dog as the photo below on his first birthday shows, and he comes from a breeder with true champion credentials, having had several dog show champions (including the famous Crufts). Max's own father was best of breed a couple of years ago and still continues to win shows.


It is said that dogs have a sixth sense and can detect when something is not right. Max's behaviour since my illness started and certainly since I've been in hospital seems to back this up and my absence has left him very unsettled as my blog has often mentioned.

I guess at 17 months old, he's the equivalent in  dog years of a grumpy teenager, but thankfully he's getting over his mischievous child stage. In his younger days he's been quite destructive. The house and some of the furniture carries the battle scars from his exploits. At one time he had a taste for the plaster on the walls and we've had patches of wall chewed out in the living room, hallway and kitchen. He's eaten dishcloths and tea towels and Andrea's silicone oven glove has also been destroyed. One of the kitchen cupboards has also had the Max treatment and the kitchen chairs (legs and seats) and the kitchen table legs have also had a good chew as you can see below.


Normally on a night Max gets the run of the hallway and the kitchen and mooches about overnight between his bed which we used to put in the hallway and his carpeted crate. But during his unsettled period whilst I've been in hospital he's had some restless nights and has destroyed his bed and chewed big holes in his carpet.

Last night we thought we'd show him some trust and extended his free area to the living room. Making sure that everything that might be a temptation to chew was out of harms reach we left him overnight to make himself comfortable on the sofas, which he duly did. I woke up about 12.30 and came downstairs to check up on him and found him curled up on one of the sofas as happy as Larry.

I didn't get back to sleep all night for thinking about silly things (must take a sleeping tablet tonight!) and so Andrea and me were up at 6am to see what Max had been up to. He'd had a minor misdemeanour and had chewed one of the older cushions, so the inner lining was ripped open and some stuffing was one the floor. Hopefully he discovered it wasn't to his taste and won't bother again. But the upshot is that I think we've found the way for him to be settled overnight which might just ease the burden on poor Andrea having to get up to him at all hours as he destroys his carpet.

But that's not before he destroyed the slow cooker whilst Bernoie was here last week. Andrea had made a chilli one night last week in the slow cooker and when dinner was finished there was a little bit left. So the slow cooker got pushed to the very back of the kitchen worktop and theoretically out of harms reach overnight. But that wasn't banking on Max's size and apparent reach as part way through the night the smell of chili must have been too much and somehow he managed to reach the slow cooker and pull it down to the floor.

It must have fallen with a real clatter but remarkeably nobody woke up at the sound, so in the morning Andrea came down to the kitchen to discover the glass lid smashed in pieces, the inner bowl licked clean and the outer casing kicking around the floor. So the dog had a chili midnight snack and we no longer have a slow cooker.

But other than his little misheivous acts, which will hopefully stop now I'm home, he's the truest faithful friend that a dog can be and an integral part of the family. As I write he's laid on the sofa alongside me chewing his bone as comfortable as can be.

Thanks as always for reading.

Monday, 24 September 2012

I'm going home again!

Great news this morning folks.

The docs have been round again this morning and as I'm generally fit and well, and my cell counts are around those of a 'normal' person, I'm being let out for good behaviour again and going home. I just need to come back as an outpatient for a couple of days this week to have my anti-fungal treatments on Wednesday and Friday, and my last chemo treatments which are due on Friday and Sunday. I guess the one on Sunday might roll over to Monday as the day clinic won't be open on Sunday.

So this morning is a good day, and it's made all the better by seeing my buddy in the bed next door sitting up in bed and looking much better than he has over the past few days. The break from his chemo treatment and the administration of drugs via IV rather than tablets seems to be giving him the break he needs to get his strength back up and carry on his fight.

We've been chatting this morning and he seems much brighter, and I've told him he must not give up the fight. I hope he heeds my advice which I'll keep giving through this blog, as I've given him the address. Keep strong matey and beat it!

So once again I'll keep things short.

Phil Bamber, my regular Monday visitor is hopefully due shortly, but I'm not going to punish him by making him wait all day to take me home again. I've spoken to Andrea and under the pretence of a surprise visit to see me with the boys after school this evening, she's coming to pick me up to take me home.

So tomorrow sblog will once again be from the comfort of my own home which I'm really looking forward to.

Thanks again for reading.

Sunday, 23 September 2012

The Saints flag worked!

Morning all.

Despite the reflective film on the window, the Saints flag remained in position (at least until my Tigers following visitors had seen it being unveiled on their arrival which was fun) and it must have jinxed the Tigers around the corner as they lost to Harlequins. Thanks to my poorly mate in the next bed having ESPN on his ipad me and one of the other guys were able to watch the game (when the picture wasn't frozen) so we were able to keep up with the score. It's amazing how much delay there is between what is actually happening live and seeing the pictures. I reckon there must have been two minutes at least and my phone was updating quicker than the TV.

So my lucky Saints flag courtesy of Scott will be locked away safely and brought out every time we play the Tigers from now on!

I had a really good nights sleep last night as did my mate next door. They're giving him a temporary break from his chemo and having chatted with him just now he's feeling better today. He had a really rough day yesterday and I felt his pain through the curtain. I hope he gets rid of the infection he has and can get back on the chemo he needs to cure him. My thoughts are constantly with him and I feel embarrassingly healthy in comparison.

Bernie is making her way home today with my Uncle Andy after he's been to watch Tom play football and they're planning on calling in on their way back to Lytham, so I have visitors again today.

Andy came down to Northampton yesterday and took the boys to the Northampton Town football game. Tom will have loved that but I suspect Sam would rather have been down the road at Franklins Gardens. Either way they will both have had a great afternoon so my thanks to Andy, I really appreciate it.

Sam hasn't been left out either and his Granny and Grandad have been to see him at rugby training this morning so both boys have had some family spectators at their respective sports today in my absence.

Other than that, on the treatment front I have a dose of Rituximab (the antibody treatment) due later  today which hasn't had any negative effect on me yet. Then all I have left is one more day of steroids, another dose of chemo on Friday and more Rituximab next Sunday to complete this phase of treatment. I can't believe how quickly it's gone.

A bone marrow biopsy at the end of this phase will indicate how I'm responding to treatment so fingers crossed the drugs are having the desired effect inside me before I move onto the next phase which is effectively a repeat of this one.

As always, thanks for reading.

Saturday, 22 September 2012

If ever inspiration was needed this is it.

Morning all,

This will be a quick post this morning as I have a day full of visitors. Andrea and the boys are due shortly and my parents are coming in the early afternoon. Then later this afternoon a couple of the great people I referred to in my post about working relationships are calling in on their way to the Leicester Tigers game round the corner.

But this morning the words will flow easily following a chat with the guy in the next bed to me last night. It has made me feel more inspired than ever to get on and ensure my goal of climbing Snowdon and raise as much money as is humanly possible to be spent on research into finding new treatments and hopefully cures for the conditions he, me and the others are suffering from.

We were laid watching Sky Sports on our respective ipad and laptops and got talking about sport initially. I was watching the Leeds Rhinos game and he was flicking between that and a football game. Once we got chatting though I was transfixed with it and lost track of the game for a spell.

I won't mention his name for the sake of privacy but he's only a couple of years older than me and like me he is involved in construction working on large projects. He has a form of Lymphoma that is even rarer than my Leukaemia, and I think he said there are only 4 cases a year compared to my 200.

He's been receiving treatment for about 3 months and has gone through radiotherapy and almost continuous chemotherapy which has really taken itself out on his body and left him very poorly. It's not helped that he's also picked up an internal infection and his only sustenance is the drips that he's on continuously. He can't keep any food or fluids down and is generally having a very miserable time of it at the moment. He's having a really tough time, poor bugger, and my heart goes out to him and his wife who's here regularly.

What really got me was when he told me that the stage of treatment he is at is effectively the last chance saloon and that despite his chances having increased from 30% survival, they were still no better than 50/50. I got an email from my sister later asking how I was and when I mentioned my bed door neighbour in my reply I had to wipe away the tears so that I could see the screen.

He's a really decent bloke and it just goes to show that these kinds of diseases are so random and indiscriminate. I wouldn't wish anything like this on anyone but why do they always seem to hit the nicest people. I truly hope he makes it through this and have wished him all the best and hope he gets through this successfully. It's taken my mind off my own illness which I still feel I have been unbelievably lucky that I have so far been unaffected by anything that has been done to me.

I'm off any treatment now until Monday I think, other than the steroids so have a couple of days rest.

I've just discovered that my plan to wind up the Leicester Tigers fans has been thwarted by the fact that there is a solar film on the windows which is mirrored on the outside. Just my luck that all we could see when me and the boys went out to the car park to check is mirrored glass! Not to worry, we've turned the flag round and as the photo below shows it just about fills the window inside. I'll leave it up and unveil it when Paul and Tracy arrive this afternoon before the Tigers game.


That's it for today I think so I'll sign off and see you all tomorrow.

Thanks again for reading.

Friday, 21 September 2012

An interesting night.

Morning all,

I'm settling into life as a patient in a multi-bed bay today.

Last night wasn't too bad after all. The snoring, farting and belching wasn't too loud and the other three patients were fairly quiet too! (Hehe)

My main gripe this morning was some of the nursing staff during the night. The bay I'm in sits opposite the nurses station and having got to sleep for a couple of hours I woke at about 1am to hear them sitting nattering not particularly quietly about nothing.

Then after a few minutes I heard a broad Scottish male accent and apparently a patient not belonging to this ward had wandered up the corridor dazed and confused. It sounded like he'd had a fall and when Security emerged a few minutes later it transpired he'd wandered from Accident Emergency, which is the opposite end of the hospital about half a mile away in an entirely different building! So much for hospital security.

Needless to say it gave the nurses something more to talk about and they regaled each other with tales of similar occurrences they'd encountered. I was just starting to get pissed off to the state of going to say something when things finally quietened down and I got back to sleep.

I think I woke up once again for a short time before the obs round came in about 7.15.

So it was a slightly unsettled and shall we say an eventful night but manageable in the end and perhaps not as bad as I had anticipated. The only other stay I've had in hospital in my life was when my son Tom had a major fall when he was about 2 years old. I spent each night in a guest bed at the side of his bed in a 4 bed bay in the children's ward and by comparison last night was easy so I'm counting my blessings.

Johannes, the registrar called to see me this morning and indicated that because of my condition, the situation of me mixing with other patients is not ideal and if they get an opportunity I'll be moved to a side room or even back to the Bone Marrow Unit. I'm not too bothered from a personal perspective now, but if it gives me a better chance of avoiding any problems then it's all good.

Whatever happens I hope they don't move me before tomorrow evening as sitting in my bed or chair I can see directly into the Leicester Tigers ground and have a view of a portion of the pitch, including the goal posts at the opposite end. They're at home to Harlequins tomorrow afternoon and I'll be flying the Northampton Saints flag in the window to show my own allegiance. Sam will be in his element when he comes to see me tomorrow.

Treatment wise I've had no real effect from the lumbar puncture yesterday other than a mild head ache, which is not surprising considering I've had chemotherapy drugs injected straight into my central nervous system. I've had a couple of paracetamol last night and again this morning and the pain is under control.

My regular chemo is due later today and a nurse has just been to see what my veins look like and succesfully installed a new cannula. The left hand has been attacked today as the right is a little bit sore and a couple of days rest will hopefully help.

My Aunt Bernadette (Bernie) arrived in Northampton last night to stay with Andrea and the boys for a couple of days. By now they are no doubt knee deep in craft activities as they are both serious crafting freaks, so it's probably just as well I'm not at home.

Tonights phone call to Andrea should be interesting. Her text this morning indicated that the dog had been up to mischief last night so I dread to think what he's been up to. The only indication I have was that it involved the slow cooker and a chilli con carne! I'll expand tomorrow when I know more.

All the best everybody and as always thanks for reading.

Thursday, 20 September 2012

The Holiday's over.

Evening all,

The holiday is well and truly over and as promised I'm back in hospital. Not in my luxury apartment in the Bone Marrow Unit either unfortunately and I now need to share a 4 bed bay with 3 other blokes! Given that I'm supposed to be at risk of infection and had been kept in isolation previously, then having been so careful whilst I've been at home I have to question in my mind whether this is putting me at risk? I think things over the coming days are gonna be tougher so I'm glad as always I have plenty to do.

One plus is that I can now see the Leicester Tigers ground from my window (but unfortunately not the pitch), so my plan of deploying my Northampton Saints flag in the window to wind up the natives may well get executed in the morning. It certainly will on match days and as they are at home to Harlequins on Saturday afternoon the plan will be executed no later than Saturday morning!

It's been another very long day, hence the lateness of this blog.

With the boys dropped off with our next door neighbour first thing this morning we made good time to Leicester and were at the reception early by 8.15. A wait ensued and I was finally taken to a bed in the Haematology day unit an hour later. News on when treatment was due to start was thin on the ground but I did manage to establish that I was going to be admitted after the lumbar puncture, so as nothing had started by 11am, Andrea made her way home and a text at 11.45 confirmed she'd got home safely.

I was finally taken to the treatment room about 12.30 and the treatment began after going through all the formalities of briefing and consent forms and was over by 1pm. In actual fact the treatment was straightforward and nothing in comparison to the two Bone Marrow Biopsies I've had. A fine needle was inserted between two vertebrae in my lower back (after a local anaesthetic) and after drawing off some of the spinal fluids a dose of chemotherapy was injected through the same needle.

The only drawback from the treatment was that for the next 2 hours I had to lay still on my back which, by the time the treatment was over, meant 3 o'clock.

All of this took place in the day unit which meant that with the exception of those of us having the lumbar punctures who had beds, loads of outpatients were in and out in the chairs around me all day coming for various treatments. I got talking to some of them and found they had a variety of conditions, primarily Lymphoma.

By the end of the day there was only me and a young guy left and we were both waiting to be admitted to the Haematology Ward. We got talking and I found that he has exactly the same condition as me and is on his third course of chemotherapy. He's only 20 years old which backs up the fact that this condition is a young persons, even childhood condition. From speaking to him it sounds like he's been through some rough patches during his treatment, even when he went through the stage I'm at, and one of the drugs I've been OK with reacted against him. Once again I get the impression my experience so far has been relatively trouble free and hope it continues that way.

Tonight could be interesting and a new experience having to share a bay with others. Hopefully I will sleep well and there'll be no drama's overnight but I think a sleeping tablet will definitely be required.

I'll report how it went in the morning.

Thanks again for reading.

Wednesday, 19 September 2012

Only a quickie today!

Afternoon all.

I can't believe it's almost the end of my second day at home and I'm back in hospital first thing in the morning. The time has flown as it had in hospital but it's been worthwhile and great to have been back in the comfort of my family and own home for a brief respite.

Today has been a fairly lazy day with the boys at school and Andrea at work, so most of the days it's just been me and the dog mooching around the house and watching TV. I've probably got less done than whilst I was in hospital.

I did have a brief trip out earlier though and after a quick chat with somebody special about my idea for the Snowdon charity climb, I went and bought a mini ipod speaker dock as the headphone socket on my ipod is knackered. At least when I go back to hospital now I'll be able to listen to a broader selection of music.

My thoughts about the Snowdon climb are gathering momentum in my mind and I have a few whacky ideas to explore which can be done whilst I'm back in hospital. I'm determined to do something and I want to make it really special and above all really productive in terms of fund raising.

I'm due back at the hospital for 8.30 in the morning so the boys are going to have to be up early and thanks to the kindness of our next door neighbour Margaret they have somewhere to go until it's time for them to go to school whilst Andrea and me head back to Leicester.

Tomorrow is the lumbar puncture, which is the injection of chemotherapy drugs direct into my spinal fluid to make sure that my central nervous system is clear. When they're fiddling with a needle around your spine it's something else I face with more than a little trepidation, but as with everything else it has to be done and who am I to refuse?

As far as other treatments go it could be a busy day tomorrow. Had I remained in hospital I would have had the anti-fungal treatment that I had on Monday today. I might end up with that tomorrow now unless they increase the dose I'm due on Friday. I'm also due to be back on the steroids from tomorrow and some of the normal chemotherapy drugs are due according to my treatment plan.

At the moment I'm not sure whether I'll be in the Haematology Ward or back in the Bone Marrow Transplant Unit and I guess it's dependant on the availability of beds. It doesn't matter to me, though I have got to know the Bone Marrow Transplant staff quite well now.

So my bags are packed, (more advisedly this time since I now know what I do and don't need in hospital) and I'm ready to go back in the morning. Once again I'll miss Andrea and the boys but I can go back in the hope that I might be able to escape for a short break again.

Thanks as always for reading.

Tuesday, 18 September 2012

Today is a good day!

Morning all,

I can't begin to tell you all how good it feels to be sat writing today's blog from the comfort of my own sofa in the comfort of my own home. But it's bloody good!

Yesterdays elation at being let home for good behaviour turned out to be a long drawn out affair and I'll tell more of that in due course, but not long after I announced me temporary reprieve from hospital in various forms came another surprise.

I got a phone call from my sister-in-law Lisa, letting me know that she and Andrea's brother Paul were on a secret mercy mission from Leeds called 'Operation Yum Yum' and that as she spoke they were on the M1 dashing to Leicester with a basket full of goodies from my nephew Freddie and niece Charlotte.

The announcement of my departure from hospital had just been broadcast and had unmasked their secret plans as they had to check I'd still be at the hospital for them to complete their mission. As it turns out they had nothing to fear and they arrived in ample time.

It was great to see familiar faces and the basket of goodies they brandished as they walked through the door will be very much appreciated and as the photo below shows brought a smile to my face.

 
We chatted for a good while and had a great laugh between us. Lisa is a very experienced nurse and understands better than most some of the issues I'm facing. We'd been up to Andrea's parents the weekend I really started feeling that things were not right and called at Paul and Lisa's the following morning so that Max could go for a walk with their dog, Echo. I wasn't feeling too well so stayed and had a coffee with Paul whilst the girls and kids all went for a walk. Lisa confessed to me yesterday that as we left that morning she said to Paul, 'he doesn't look well'. That must be a nursing intuition!
 
Well the mercy mission complete they departed in time to go and collect Charlotte and Freddie from school back in Leeds.
 
Not long after my next guest arrived, who had already planned on coming for an hour or so but in the end got press-ganged into waiting the day to give me a lift home. To Phil Bamber I will be eternally grateful for his company yesterday afternoon as we waited for the various bits of the jigsaw to fall into place that would finally let us leave.
 
Then yet another guest arrived in the form of Scott Pagano, one of my rugby buddies. He came bearing gifts too in the form of a Northampton Saints flag, which I will deploy to wind up the natives when I return to Leicester, and a Saints Rubik's cube, which should keep me occupied during the long hours in hospital.
 
Last weekend Scott and one of his sons climbed mount Snowdon and as we talked about it and looked through the photos he had, I became inspired to perhaps do the same when all of this is over to hopefully mark the end of my journey and the conclusion of my own metaphorical climbing of a mountain. In so doing it must give a great opportunity for some fund raising to be done and give something back to the people who make the treatment and hopefully cure of patients with Leukaemia possible. My current thoughts are to raise funds for the Leukaemia and Lymphoma Research charity as it is dedicated to blood cancers of the type I have.
 
Since then my mind has been working overtime and a plan is hatching which I think could be well worthwhile and could potentially raise money that could be put to good use. Through Sam's rugby I have a fleeting association in the main with Towcestrians Rugby Club, as does Scott. I think there might be an opportunity to get a substantial group together made up of parents, coaches and kids to do a 'Dieseldrinkers Road To Recovery - Tour To The Top' sponsored walk up Snowdon or something similar when I'm over this and my fitness returns - perhaps mid next year.
 
Not being one to do anything by halves my mind is also working on ways of making this a really special event to maximise the amount of money I could raise and I have a totally off the wall idea that I'm hoping to explore, again with a rugby flavour, but I'll say no more about that until I've made some enquiries.


Back to the escape plan.

Scott left after an hour or so, leaving Phil and me to wait for the cogs to whirr. I had to have a final anti-fungal (makes me sound like a fish doesn't it) treatment which left me on an IV pump for an hour and half, so we sat and watched daytime TV. Has anyone ever seen Man vs Food??

With the treatment finished the next obstacle was getting my pharmacy delivery sorted ready to go home which seemed to take an eternity. In my frustration I made a few trips to the kitchen and back to try and highlight the fact that I was till there! My dinner came and was consumed and still we waited.

On one of my journeys to the kitchen though I did catch sight of one of the nurses in tears and being comforted by one of the other nurses. I've mentioned before that one of the other patients (there are only 5 of us on that ward) has clearly been having a hard time and I think yesterday things may have taken a turn for the worse. I hope I'm wrong. With that in mind I elected not to make a nuisance of myself and waited my turn.

My pharmacy finally arrived about 7pm and the cannula was at last removed from my hand and after a briefing about my return on Thursday and precautions whilst at home I was finally free to leave.

Andrea had managed to keep my arrival home a secret from the boys so it came as a total surprise when we arrived home about 8.30pm. I rang the doorbell and stood with my back to the door in the dark as they opened it. As I turned they both leapt into my arms and tears were shed all round. It was all very emotional but so bloody good to be home.

It felt great to sleep in my own bed for a change, even though it was short lived as the dog was up and whining at 4.30am. I elected to let Andrea stay in bed as she's had to put up with him doing the same for the past 2 weeks so I went and laid on the sofa in the living room and Max went to sleep again.

We've walked the boys to school this morning which helped me realise how little walking I've done over the past couple of weeks and I actually found it quite tiring. Andrea has just got back from walking Max with her friend Wendy and we're having a coffee.

The next job is a trip to Boots to get a decent thermometer and blood pressure monitor as I need to keep an eye on things myself in the absence of the nurses observations. Any issues and I'll be straight back in hospital!

So for now I'm very happy. I never expected to be able to come home at all during this first 28 day induction phase and I hope it's a sign that things are headed along the right path and that my body is reacting as it should. I'm not taking anything for granted though and perhaps the goings on down the ward corridor yesterday are a sharp reminder of how serious this could all become.

Finally, I have to say thanks to Paul and Lisa for their mercy mission, to Phil for his unstinting patience yesterday (and the lift home), and to Scott for his inspiration to get my arse in gear at the end of this and do something worthwhile.

Thanks again for reading.

Monday, 17 September 2012

Really good news folks!

Morning all,

I'd prepared myself for a long blog today in the absence of any treatment and was going to give you the next instalment of the Coiners story, but as things have turned out this is going to be very brief, for a VERY good reason.

A little earlier I was lathered up with shaving foam tidying up my beard growth when the consultant popped in for an update chat and some very good news. She told me that my white cell count has improved to a state where my risk of infection has consequently reduced. The other parts of my blood are looking healthy too. This was the first part of my good news.

The best bit was that because they are happy with my progress and the fact that I'm fit and generally well, I'm being allowed to go home for a couple of days. I'm absolutely ecstatic about that and a quick call to Andrea after the consultant had gone was the best phone call I could be making right now.

So my bags are packed, and after a surprise visit from Andrea's brother and my sister in law to deliver a basket of goodies from my nephew Freddie and niece Charlotte, I'm finishing my daily blog off ready to go home later this afternoon with Phil who was also calling to visit today anyway.

I know I have to be sensible whilst I'm at home as I am still at risk, so no work, housework, diy and be sensible about where I go and what I eat. But it will be so good to be back at home for a few days with Andrea and the boys.

I have to report back here on Thursday morning for the next round of chemo treatment and a lumbar puncture which I'm slightly nervous about. In effect this is a needle into the spinal sack a bit like an epidural, which enables the injection of chemo drugs directly into the central nervous system, which is otherwise well protected from the normal method of administering chemo. This ensures that any remnants of anything in my central nervous system which could later come back to affect me are also cleared and gives me the best chance of getting clear.

Don't get me wrong, there is still a very long road ahead and I'm not taking anything for granted by any means, but this is hopefully a good sign that things are headed along the right path and that my determination to fight and beat this monster is justified.

I'll continue the blog until this is over, but tomorrows (all being well) will be from the comfort of my own home.

Thanks as always for reading.

Sunday, 16 September 2012

Yesterday - what a day!

Morning all,

Wow what a marathon yesterday turned out to be. It felt very long!

As you've seen from yesterdays blog I had a fantastic morning with Andrea and the boys, and the transfusion of the first unit of blood started not long before they left.

That all went fine and was complete by probably about 2 o'clock with no adverse reaction.

Before commencing any treatment the nurses check the cannula in my hand which is how they feed everything into me. They do this by injecting some saline solution into the cannula and making sure they have a good flow, with no pain or leaks.

A check of the cannula before the antibody treatment began showed that the one I had was leaking and as they can't afford to get the chemotherapy drugs on the skin or into anything other than directly into a vein, it was decided that I needed another cannula fitting. This was probably about 3.30.

A wait ensued whilst a doctor could be found to do the job. The nurses often do it but one of my fellow patients on the unit is going through a very rough time so they have their work cut out and I'd rather they concentrated on those that need it. The poor soul has had ITU staff and senior consultants in attendance for the last couple of days so sounds in a bad way. It's a reminder that so far I have been lucky and how things can change so I'm keeping my whits about me.

A junior doctor turned up about 4 and promptly began the process to cannulate my left hand to replace the cannula in my right. It helps to alternate hands and give them a rest for a few days as the cannulas normally last 3-4 days depending on use.

Well the poor girl really struggled and she poked and prodded my veins for half an hour without success in drawing blood and I have to say it was bloody uncomfortable at times. I do actually have good veins which are clearly visible and stand out like train tracks when they apply the tourniquet so she had plenty to aim at!

After two false throws she thought she'd had success with her third dart and a small flush of saline appeared to go in OK, if a little slowly.

Thankfully the nurse that came to prepare me for my treatment later did the same and to our alarm my hand started swelling. The junior doctor had clearly missed the spot again and the cannula was injecting into my flesh rather than a vein, which could have been rather nasty!

A call went out for her to come back and try again and I sat waiting for another hour dreading the sight of the same doctor returning. Just before 6pm I was relieved to see the familiar face of Johannes, one of the registrars that has been dealing with me since my admission, at the door carrying the tray full of utensils to do the job.

I told him if the left hand was difficult, to take the old cannula out of my right and go for it there again, which he duly did. Good man, he hit the bulls eye with his first shot and relief was felt all around.

After my Macaroni Cheese supper my treatment finally began about 6.30 and was the same stuff I had last Saturday over the course of 5 hours. Thankfully, because I'd had no reaction last week they were able to increase the rate to virtually maximum from the off, and maxed it out after a short time. It still took till 10pm though and then I had to have another half hour of saline to flush the line through and get all the good stuff inside me.

So I'd spent much of the day laid on my bed and by this time my legs were itchy and irritable. I was glad to get up and about at last and made a few trips to the kitchen to stock up the fridge in my room with goodies and stretch my legs a little.

Thank God for the WiFi service and Sky Go that I was able to watch my beloved Leeds Rhinos progress to the next stage of the Super League play offs and I hope my shouting at the laptop screen enthusiastically didn't disturb the other patients too much.

All I have planned today is the second unit of blood for my transfusion, so I have my afternoon and evenings TV viewing planned. Before then I'll be Skype-ing Andrea and the boys to get a match report from Tom on his second game of football and Sam on his mornings rugby training.

Then I have a few days rest with no more steroids and no more chemo until Thursday so hopefully things will remain as they are. Still feeling fit and strong and my spirits are as good as they've ever been. I'll let the nurses look after those that are more in need than me and I wish my fellow patient all the best in turning things around.

Thanks again for reading.