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 (

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.