It’s Friday morning and I got home yesterday afternoon. I still can’t believe how easy everything has been!
It’s Friday morning and I got home yesterday afternoon. I still can’t believe how easy everything has been!
I’m feeling really positive at the moment!
Last week I heard back from the Anthony Nolan Trust to say that the patient is doing a lot better so we’ve rescheduled for the last week of November.
I went for another blood test on Friday, as haematology is only valid for 30 days. If it had been delayed for much longer I would have needed further blood tests, and eventually the other tests I’ve already gone through. I think the theory is that my immediate health is more likely to change than my developing a chronic heart, chest or blood disease.
I’m starting to get quite excited about things now. I won’t lie that it would have been helpful to have had the procedure on it’s original date last month; but these things happen and I’m looking forward to helping someone. As always I have my fingers crossed that the patient remains in good health between now and the transplant.
In my last blog post I was leaving the day patients ward at the London Clinic, to go down the street to have a chest X-ray and ECG.
On my way out I said goodbye to the three or four (as you may remember; young and beautiful) staff members I’d met in the short time I’d been on the ward. They all wanted to tell me how much they appreciated what I was doing. I got the impression that (despite this being a private hospital with all the mod cons and extortionate rates) these nurses, orderlies and other staff really cared about what they were doing. They were proud of making a difference and they were so grateful to me for helping someone.
I should highlight at this point; the experiences I have had with the NHS have been amazing; the staff have always seemed to care and have been very hard working. But in comparing the two it is starkly obvious that the NHS need more resources. They deserve to be able to give their patients first class care but they simply have too much to do. But there’s nothing I can do about that now, so I’ll just tell you more about my experiences.
I said my goodbyes and tootled off down the road. My destination, a few doors down on the opposite side of the road, was far less grand than my first stop; in a converted Georgian town house. There was a small, understated reception (albeit with a marble floor and shiny brass fixtures).
Beyond that there was a rather unimpressive room with a couple of reading desks in the corner and chipboard dividers set up for cashiers; those chairs with wooden legs and padded seats lining the walls. The whole place felt more like a library or GP’s surgery than a private clinic. (It didn’t stop them displaying their pricing policy though!)
I handed over my paperwork and was asked to take a seat. After a few moments I was collected and escorted down the corridor. It would appear that the staff, though pleasant, were not quite as glamorous here; which seemed in keeping with everything else.
I noticed that the door I was heading towards displayed a worrying sign. “EXERCISE”. I thought “hold on just one minute! Nobody told me about this!” For those of you who don’t already know me; I don’t do exercise. Plus I had my nice shoes on ready to go to the theatre that evening and was in no state to get all sweaty!
My concerns were hardly soothed by being asked to remove my shoes, shirt and trousers, and lie on my back; but I got the feeling this wasn’t optional. The gentleman put electrodes around my heart and on each ankle and then walked away; before coming back 15 seconds later to remove them and telling me to get dressed and I can be on my way. Anticlimax!!!
I was then directed downstairs to another waiting room to sign in for my chest X-Ray. Another shirt off, another pleasant nurse. Same old stuff, really; nothing to mention other than they took a photo of my chest. After this I was invited to get dressed and be on my way.
And that was it for the day really. Nothing at all scary or intense. It was then just waiting for a call to confirm that all was okay. As I mentioned in my last post, I know my HIV status, try to keep myself healthy etc but I had already began to get inside my own head with the what-ifs and irrational worrying. That’s why I started to panic when my phone rang only 3 days later!
No need though! They needed more blood – they didn’t tell me why but I assume they’d smashed a vial or lost it or let a near-useless work experience student at it or something; either way they needed some more.
It was a Friday afternoon, I was in London for a course. I’d already been out of the office for two days and had been in the job for a month, so I didn’t want to take much more time off. Quick thinking on my part pushed for that very afternoon. That was acceptable so I hot-footed it back up to the exclusive Harley Street area.
Arriving in the same way I had beforehand (see my previous blog post), albeit slightly out of breath. In the same manner I was red-carpeted through by the same faces; each of whom remembered me and seemed visibly pleased to see me again. Filling the lovely nurse in on my mad dash, he quickly arranged a nice cup of tea. Well; I say a cup of tea. It was a silver tray, fancy tea pot, jug of milk, slice of lemon, china cup and selection of biccies!
Blood taken again I was off on my way. It was another week or so before I heard any more from the Anthony Nolan Trust. Doubts and worries ebbed and flowed; obviously unfruitfully as everything came back clean and clear. So that was the green flag to proceed to the donation!
It was another 2 weeks before I got another call. Just over a week before I was due to go in. That was when I heard the news things were on hold (see here)…
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.
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.
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.
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
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!
The phone rang on Friday afternoon. Typically, I missed the call and picked up my voicemail. Then fell off my chair.
It’s been less than a month since the email saying Anthony Nolan had processed my blood and have added me to their register with a special flag next to my name and at the time I thought “Aww, that’s nice!” In the meantime we’ve had our Relay, though; so I gave it little thought and did not really expect to hear anything.
Yet here I was; phone glued to my ear listening to those fateful words; “You’re a match”.
The world stopped.
My heart stopped.
The rest of the message faded into the background as my head swam with every emotion possible. I listened to the message again to make sure I wasn’t dreaming; then once more JUST to be sure.
Then the penny dropped. This is my chance to give back. I have been called upon to save a life like someone saved my dad’s life! Pride swelled in my chest and a grin spread across my face. I felt proud and honoured, a little smug (tiny pang of guilt crept in at that point – it’s not about me it’s about someone who needs help!)
Then I felt like I was wasting time; this wasn’t a real person on the phone this was a pre-recorded message. One I’d listened to three times already. I couldn’t afford to waste time; I had a life to save!
Quick as a flash I grabbed pencil and scribbled down the number in the message and returned the call straight away. As I was dialling I realised that despite this myriad of emotions, the message had only been received five minutes ago. I could afford a deep breath; so indulged. It’s amazing how oxygen can revitalise you!
A touch calmer and a little less blue in the face, conversation seemed relatively straightforward with Rizwana, the lovely young lady with the northern accent who was expecting my call.
One thing that struck me was how much choice and control I appeared to have; I was able to veto the method of donation and the date too.
For those of you unaware, there are 3 ways to donate stem cells; the traditional way is extracting bone marrow from the lower hip (large needle, general anaesthetic, overnight stay in hospital); or the much simpler peripheral method of taking blood from one arm, running it through a machine to extract the relevant cells, and pumping it back into the other arm. 5 hours of being sat around chilling out. The third is donating an umbilical cord but as I’ve none of those to give we can instantly discard that idea… Obviously everyone would prefer the peripheral method as it’s less invasive and most donations are now done this way. But this patient’s medical team, for reasons unclear but I’m sure very valid and based on very technical know-how, had specifically asked for bone marrow.
I was okay with this. I was genuinely surprised when I was given the option to request otherwise. I had signed up to the register agreeing to go through this if required but here I was being offered an easy way out? Tempting; so tempting…
No. I did agree to give marrow if required. The patient’s medical team didn’t request this for fun did they? There is somebody out there in a hospital needing my bone marrow. Not just my stem cells; the marrow itself. That’s a commitment I cannot back out of.
It was at this point that I realised that this thought process was part of my internal monologue but an eccentric ramble at a rather bemused Rizwana. Blushing, (luckily it was a phone call and she couldn’t see!) I quickly apologised and tried to get back on track.
Then to the date: my other half’s 30th birthday. “Hmm,” said I; “not that it’s a problem but…”
“Not a problem!” Rizwana quickly replied. “The second choice date is a week later. Is that convenient?” Luckily it was so we quickly agreed on that.
It was only then it even dawned on me that my employer may want to know I was committing to time off. “Shall I let you call your boss?” (yes I’m rapidly realising that I vocalise more than I’m aware). I frantically called my boss and left a garbled, panicked message on his answerphone and anxiously waited for a response. I have to give them their dues; my employers have been incredibly supportive and accommodating throughout this process; starting with an unreserved “yes of course” even before I gave them the date. So that set I called Rizwana back to firm up the details.
That call didn’t last too long; just to confirm that she would send over all the details via email and post the following week; and provisionally arranged a date to go for a medical a month before.
So that gave me a nice boost for the weekend and a bit of time to sit back and appreciate that I was about to change someone’s life. It brought back memories of hearing the news that the Anthony Nolan Trust had found a match for my dad and how happy we all were that someone was able to help him.