A Grand Day Out

Firstly I apologise if there seems to be a few loose ends and random statements in this blog post; I have a lot to write about and will come back to mop up a lot of them eventually. They all add to the story in a roundabout way, I promise!

You may not be surprised to learn that if you’re going to put anything into the body of somebody who is seriously ill, you want to make sure it doesn’t come from somewhere that’s dirty, infected or generally diseased. Good manners, as much as anything I think. That’s why I was asked to go for a bit of a check-up at the hospital.

The hospital of their choice just happened to be the London Clinic; which would be where I would also have my procedure. There are 4 hospitals that do the procedure; 3 of which are in London and the fourth in Sheffield. I had found a relatively convenient day and had requested an afternoon appointment so I could be in work that morning. However there were no afternoon appointments available and the most convenient happened to be just before lunch.

The information that (my now good friend) Rizwana from Anthony Nolan had given me was quite extensive; a copy of the consent forms, disclaimer forms, insurance forms, a letter for my employer among them.  I had noticed that one of the letters had said I’d need 7-10 days convalescence time; which was far greater than I had expected and worried me a little.

They made a big deal that they would do extensive with the blood they were to take; and the results would be shared with my GP, the patient’s medical team etc; and would include a HIV test. Now I had no reason to fear; I know my HIV status and always have been very careful; but when it’s there in black and white you can’t help but let your mind wander to the “what if…”

Once again; if you hadn’t spotted it already I have a tendency to over-think, over-analyse and go a little bit nutty at times. Luckily this was not one of those times. Yet.

Where was I?

Oh yes I’m heading into London for lunchtime. My appointment was at the swanky London Clinic. Not strictly on Harley Street (known for its upmarket private medical establishments) but one road back; 2 minutes walk from Regents Park on Devonshire Place. The sun is shining and I’m feeling good.

I found the hospital very easily; a clean, new limestone-clad building on the corner of the road with a subtle yet stylish metal logo on one side and some contemporary decoration up the other wall. Professional and while not strictly “welcoming”, it was not intimidating or scary.

On entering I was met by three young gentlemen; two on a reception desk and one stood to the side; in matching navy blazers and striped ties. Each had one of those clear earpieces with coiled wire down the back as if they were bouncers to the stars. Yes, I too found this a little odd.

But I thought; “Hey if you’re rich enough to stay here…” and went with it. The youngest of the doormen, sat at the desk directed me to “sign in” at the welcome desk. (Monologue remained thankfully internal as I questioned what they were sitting at). The welcome desk was, bizarrely, not very welcoming. Three cashiers’ windows; one dropped to disabled height as if at a proper bank. There were two charming young ladies (it’s amazing how everyone in sight is so young!) to take your details and get you to sign disclaimers simply for being in the building.  (It was at this stage I read the informative leaflet about private clients’ charges per night, deposits etc that made me realise that this was an entirely different world I was stepping into. I’m so immensely glad that I’m not picking up the bill for my stay, as to fund it they’d have to take a kidney out as well as bone marrow!

 

Luckily I’m not. So all’s well; I sign in and am directed to the third floor; or Day Patients, according to the signs; where I am greeted by a delightfully friendly receptionist. Thankfully she was not as young as any of the others (I was starting to consider a facelift) but she was every bit as charming and even more welcoming. I was asked to take a seat for a few moments before being met yet another charming, fresh-faced individual – this time an orderly whose name I didn’t quite catch – came and escorted me to what appeared to be a dentist’s chair without the sink and drill.

The orderly took my temperature, blood pressure etc and I was offered something to drink and I asked for a glass of water. I expected a little plastic cup from a water-cooler or similar. What I got, however…

Yes that’s right, reader. It’s bottled. It’s from Blenheim Palace; carbonated for my refreshment and on a silver tray with a doily. Definitely warranted a photo!

 

I was then greeted by a consultant, who warmly shook his hand as he introduced himself and thanked me for agreeing to take part in the endeavour. We went into his office and he explained the procedure in a little more detail, went through a thorough medical survey (the idea being that he could follow-up with a physical exam if needed – it wasn’t) and offered me the chance to ask any questions about the procedure.

After that I was escorted back to the dentists’ chair, where I happily sipped my water as the orderly and a nurse (whose name I also did not catch) busied about preparing to take my blood. Both were very personable and comforting; especially as the nurse saw I wasn’t completely at ease with having my blood taken. Their conversation continued as the needle went in and they did the deed; and it was obvious that they were very skilled at the routine of distraction and comfort.

I was invited to enjoy the rest of my drink until I felt ready; when I was expected to go to a building 100 yards down the road for ECG and chest X-ray, which will be where I’ll be starting in my next blog post in the coming weeks.

Pause

pause-button

I’ve been busy working hard on my latest blog post, which is going to be about my pre-donation medical. It’s surprisingly long and I’ve been considering splitting it into 2 parts!

I thought I’d let you know that today I received a call from the Anthony Nolan Trust to inform me that the patient has developed an infection so we need to delay the procedure for around four weeks.

I’m a little disappointed not to be going ahead as planned, but completely understand and am happy to reschedule.

I’m sure you will join me in wishing the patient, whoever and wherever they may be, a safe and speedy recovery from this infection so they can concentrate on preparing for their transplant!

 

The other complication is that there will now be more than 30 days between my medical and the donation; which means I’ll need to go in for another, at least partial one. I won’t tell you the details in this post but I’m sure you’ll read all about it soon.

Blurred Lines and Question Marks

There have been a few times since I started this journey that I have been asked a small number of similar questions, so I thought that in lieu of more of my babble (see previous blog post for last week’s ramblings) I’d fill in some general blanks and my rationale behind blogging.

 

Anyone who knows me personally will know that I’m fiercely proud of everything that we achieve at Relay for Life Harrow and the work of Cancer Research UK in general. We enable the most advanced minds in the world the ability to beat cancer at the basic level. But this strikes me as different. It’s direct action and feels much more personal; reaching out and being part of something we’re ultimately striving for; a cure.

But what does that mean? In everyday life, “a cure for cancer” has become a cliché for the unachievable goal. At Cancer Research UK “cure” is the end goal that won’t be achieved until very cancer is cured; something that will be achieved someday. It’s still revered as something far off in the distance though as we know there is so much work to be done. Even at Relay, as we spell out the word CURE next to the word HOPE, it does little to instill the idea that cancer can be cured.

Hope Hill, Relay for Life Harrow 2013

Hope Hill, Relay for Life Harrow 2013

But some cancers can be cured. That’s why we have cancer survivors. We’re not talking about a small number of lucky few either; half of all cancer patients will survive for 5 years or more. Some cancers, such as testicular, have a 97% survival rate.

The Anthony Nolan Trust provides what we’re looking for; a cure. The register helps to match individual blood cancer patients to those who can help them.

Anthony Nolan is a different charity and not related to Cancer Research UK; but to me they go hand in hand. The discoveries that have allowed stem cell transplants and the work of Anthony Nolan have come in no small part from the work of Cancer Research UK; and the beneficiaries of the Anthony Nolan Trust, our Survivors, are celebrated as VIPs by Cancer Research UK at Relay for Life.

 

Though saying that, I was a little unsure whether I should be writing this blog in case there was any confusion about the work of either charity. It was a tough call as we try very hard to put out a clear message of what we’re trying to do and align ourselves to the Cancer Research UK that I didn’t want to undermine what we’ve achieved so far. I also didn’t want to spread any misconception about what the Anthony Nolan Trust is or what it aims to do.

The alternative standpoint is, of course, that the above view is a rather partisan one. Cancer

The new Francis Crick Institute

The new Francis Crick Institute

doesn’t fall neatly into silos, and neither should the fight against cancer. In fact one of the biggest projects CRUK are currently working on is a new London based cross-disciplinary research centre called the Francis Crick Institute for this very reason. More information can be found at http://support.cancerresearchuk.org/support-us/donate/become-a-major-donor/how-you-can-give/create-the-change/about-the-francis-crick.

 

Obviously I ended up going for the second option and so far I think it’s going quite well. I’m trying to combat the confusion by spelling things out as best I can and hope that it’s paying off (?!). I would like to receive any feedback on these blogs so please leave a message at the bottom or email me at Teams@RFL-Harrow.org.uk

 

In the next week or so I’ll be telling you about my preliminary medical – it’s more exciting than it sounds, honest!