No going back

I wish none of this was happening to me, but it is.

How do I talk seriously to my girlfriend about dying much younger than I should?

Readers of previous posts will know how important having children is to me, so do we go for IVF knowing full well that by the time they are ten I could be dead?

What sort of impact would it have on their lives?

What does Poppy do then? Getting any life insurance will be virtually impossible so do I bother?

What about buying a house - will Poppy be able to downsize if I die earlier than expected?

Should I ditch saving for a pension?

What about holidays? We both love to travel but I won't be able to go abroad for at least another year or so.

I wish we didn't have to address these questions, but we do.

This cruel and indiscriminate disease impacts not only on my life but also on others - especially Poppy's- and the depth of how much I hate and resent that fact is difficult to express.

Being told you will die much younger than you normally would is hard to come to terms with. "Anyone could get hit by a bus tomorrow, you don't know what's around the corner." That's what everyone keeps saying, but for me the 'could', in this metaphorical incident, has been replaced with a 'will - at some point'.

Also, why does everyone seem to think there are so many bad bus drivers out there?

I wish I didn't, but sometimes I think the best outcome would be if I died in the next couple of weeks.

Sorry.

I did say that when I started this blog it wouldn't be all doom and gloom but everyone has down days. I'm lucky because I can snap out of mine pretty quickly - I've got a donor, a fantastic medical team on my ward, support of a wonderful girlfriend, family, friends and work colleagues.

Since being released from hospital in early March I have had some great times with all of them. Everyone has helped me feel better, just by keeping in touch, making me laugh or by buying me a pint.

People said to me when I told them that I was writing these blogs that it might help others who are in a similar situation. I don't know if that's the case, but from my point of view I have found writing them incredibly cathartic. All the comments have been lovely and I would like to thank everyone who has posted one.

Regarding the bone marrow transplant itself, obviously I'm nervous, but also highly confident that it will go well.

However, I have to say I'm sick of being asked when my "operation" is or "when my hip is being broken". It has become pretty obvious that there is a lot of confusion about what the transplant actually is.

I can't do much in my present condition but the one thing I can do is help raise awareness and clear up many of the myths surrounding bone marrow, or stem cell, transplants.

That's why I wanted to take part in a series of films, explaining the procedure, for www.examiner.co.uk.

My colleagues Gemma Castle and David Himelfield will be making a number of short video blogs explaining how my body is prepared for the transplant, the transplant itself, then attempt to capture what it's like to be in isolation.

From my point of view I hope that last stage is boring and uneventful. It can be a bit of a lottery with symptoms ranging from a slight skin rash to good old-fashioned death. For example, patients can experience severe pain due to the lining of their throat and gut being destroyed during the treatment.

Obviously I'm not too excited about that prospect but I suppose we will have to wait and literally see what happens.

The Fear

Sometimes wonder what I put you readers through.

One day it's all guns blazing, drink downing, House of Lords campaigning bravado.

The next day you get this.

Sorry.

On Monday afternoon and evening I was really unwell and was eventually sick.

We are still not sure what caused this but once again it was the uncertainty of being in a situation you don't fully understand or know where it's going to go.

My mum phoned up the excellent district nursing team and I spoke to a sister.

I explained my symptoms then had to run off to vomit while she was still on the line.

The nurses came round really quickly and gave me a strong anti-sickness injection.

The nausea quickly subsided but the drug knocked me out big time.

I felt like Mr T when he made it perfectly clear he wasn't intending to board any plane.

The sedation lasted ALL of Tuesday. I would wake up feeling groggy for about 20 minutes then have to go back to bed for about four hours at least.

I still have a strange feeling in my stomach but it is improving.

As I have written many times before I am not afraid of dying.

However, I am scared that the end stages will be long, drawn-out and unpleasant.

Sedation can really help but that loss of control, which is probably going to happen to me, is frightening.

For all the fun I've been having lately, the decisions I have made, the control I have taken back from this disease; that blip was a timely punch in the head that this situation is unlikely to unfurl in quite the way any of us would hope.

You can forget or kid yourself just how debilitating feeling unwell is.

I always want to be on my feet, out of bed, doing everything I can while I still have time.

Not so exhausted that I have to turn my phone off and leave my friends and family all wondering and worrying.

Lying in bed, not knowing if you are going to get better, or what exactly is causing you to feel sick, is scary.

The times you are awake but unable to function normally are the worst. There is too much time to think seriously about those end stages and with your stomach aching, your body feeling out of sorts, I did find myself getting a bit upset.

You find self-pity rearing its ugly and pointless head again.

My mind opens up again to the injustice and seemingly relentless tragedy that you have all shared over the last 18 months or so.

Please, when my time does run out, let it be as peaceful as possible.

I've had my fair share of unpleasant experiences - as have all my family and friends.

I'm writing this at 5.45am on Wednesday morning.

That is a good indication that the sedation has worn off and my body clock is desperately trying to readjust.

I feel tons better and have a quieter day planned ahead.