Firstly, the weekend at home was very nice! Had a lovely couple of days baking with mum in preparation for the homemade afternoon tea me, Lot and Boo had on Sunday. Now there are some reasons behind this idea - 1) Lot and I had booked Mum and Dad in for their own Afternoon Tea at the Chilston Park Hotel for a Mother's Day present, and basically I was a little bit jealous so decided to do our own at home for when Boo came to visit :) and 2) a lovely lady from the Red Cross volunteers to give patients a bit of a manicure at the Royal Marsden and when I was in last she did mine and we were having a good chin wag about Afternoon Teas. She also put the idea in my head as her and her friends host their own every few months - I thought this was a fabulous idea! I look forward to retiring already! In addition, it's actually quite easy to do as things can be made in advance (except the sandwiches if you're neutropenic like me :( otherwise Mary Berry has good tips for making sandwiches in advance) and it all makes life very quick and simple, and looks pretty fancy without busting a gut :P !
 |
| Afternoon Tea with Lot and Auntie Boo |
Monday involved another trip to the Royal Marsden. Now, some of you may wonder how I manage to get up to the hospital quite so much since I'm unable to drive due to my chemo brain and peripheral neuropathy (quite frankly I wouldn't feel like I'm safe to drive!) /am able to afford the petrol/how the parents and Phil are able to get so much time of work. Well, besides my parents' and Phil's works being absolutely amazingly supportive with flexible time off, there is also such a thing as hospital transport. As I understand it, not everyone has necessarily been to hospital that much or if they have they usually don't have to be in there long or very often, so many people may not be aware it exists. But for Medway and Maidstone, a company called NSL provide free hospital transport in the form of either a taxi or ambulance depending on your needs - my taxi ride would otherwise cost me £90 each way so this service is an absolute life saver! Again, more amazing support you don't realise is there until you need it! Mum came with me this time too as we weren't sure if I was going to start my chemo and I had another appointment with my consultant. My bloods were taken as soon as we got there - at 10am, only a couple of hours before we needed to be there! The only problem with hospital transport is that because of the journey they do like to arrive 2-3 hours before the appointment time and the journey can sometimes take only an hour...although sometimes it can naturally take longer thanks to the M25's unpredictability! Me and Mum then had to hang around for a bit before my appointment and to wait for my blood results, luckily we're allowed to use the Teenage Cancer Trust Ward, which is so nice and relaxed and we can make ourselves cups of tea and watch TV...like going to a second home :) Anyway, result of the appointment with my doctor was: my blood counts were good re: RBC, platelets, WBC, but my neutrophil's were 0.2! This he thought could be a side effect of the antibiotics I was on, since my other bloods were fine, so my bone marrow was obviously doing it's thing, just not with the neutrophils... Soo, I got started on some GCSF injections which I had to inject myself into my stomach subcutaneously (under the skin), which I was told to do and then as soon as my count was above 1 could start chemo. GCSF stands for Granulocyte-colony stimulating factor, which stimulates the bone marrow to produce granulocytes and stem cells (the cells that are go on to produce neutrophils and other blood cells) and release them into the bloodstream. Yet another drug we use in veterinary medicine also - I'm loving trying all this stuff! So, I'm pretty confident this stuff works, since my Aunt has also had to have it in the past so I've heard it works and I've seen it work! So, I'm feeling pretty positive about all this when I start, I was just a bit paranoid about whether I'm injecting it properly, since I've err put on a bit of extra weight around my belly area of late :/ yet nowhere else...which is slightly irritating...so was concerned I was injecting it into my newly acquired fat. lol
Tuesday, I had an awesome day with
Maddie - had a good catch up and made us a tasty Chicken Ramen for lunch.
Unfortunately, (or some may say fortunately, as I'm sure I'm boring people with
the food pics) I didn't get a picture of it, it was too good to wait to eat! I
was trying to be as healthy as I could this week and stock up on lots of
protein and vitamins so that my bone marrow would actually produce a decent
amount of neutrophils!! So Wednesday, I made me and Lot a Quinoa and Fajita
bake, since Quinoa is a superfood - a grain with a really high protein
content and the only one to have all the amino acids in it! So I figure, pretty
good if you're making loads of new cells like I am trying to at the moment.
|
||
What with this crazy neutropenic diet
I'm having to eat at the moment, and all these new dishes I'm coming up with to
boost my protein intake, I'm seriously considering publishing the recipes I'm
finding useful, which mean I can keep to the weird diet and yet eat tasty, healthy
food - because there is a definitely a niche market out there! What do people
think? Should I bother? Or maybe just create another blog for them? :/ Make it
free to all?
|
Anyway, today I was back in the Royal
Marsden for more bloods and then depending on these results I might start my
chemo... So to say I was a bit twitchy this morning is an understatement. I was
itching to find out whether I could start my chemo, but also if I could get a
takeaway for dinner! :P You know me - it's always got to be about food at some
point!! Anyway, Mucha, my clinical nurse hands me a copy of my bloods at 3pm, and
I'm slightly confused as it doesn't have the neutrophil count on it - but I see
my total white blood cell count has gone up from 1.3 on Monday to 6.0 today! So
- I'm instantly thinking - something's got to have gone up, please let it be my
neutrophils!! And low and behold my neutrophil count is 3.85!!! So, I had my
intrathecal chemo at 5pm (had to lie down for an hour after - standard) and
started my oral chemo drugs - Mercaptopurine - yay!! I've realised today that
being able to start my chemo has made me ALMOST as happy as being able to have
a indian takeaway for dinner - which yes, is what we went for tonight - and it
was awesome :D my tastebuds are indeed taking a turn for the worse so hot curries are great :) one of the few things I can really taste! So good :) AND I had a tandoori king prawn - just because I do not know when my bloods are going to be this good for a while so I definitely went the whole hog, and had shellfish. Well it could be months before I'm able to again... It's also been a pretty good day because I got to see Phil who I haven't seen for over a week because he's had a sore throat and it finally went this afternoon :D so all in all - pretty amazing day :D Going to sleep pretty content with life :) - let's keep our fingers crossed that this lot of chemo kick's leukaemia's arse once and for all! But I've started the treatment plan finally - and that is the main thing!
So what's next? Well, tomorrow I have to go up for IV cyclophosphamide and to show them I can subcutaneously inject myself with Cytarabine, which I have to inject for 4 consecutive days and then I'm back in for another intrathecal injection next Thursday and another 4 days of Cytarabine. Then the Friday after that I go up for Vincristine and Pegasparaginase. And the week after that, another bone marrow (obviously under sedation ;) ) and intrathecal on the Thursday and another dose of Vincristine on the Friday. And then we see what the bone marrow shows and kind of wait to see those results before continuing with the protocol. I also am intermittently on the oral chemo and cytarabine during this. And inevitably will need regular blood tests, but thankfully can go to Maidstone Hospital for those - yay :D! And I think that's all folks for the moment :) - let the Consolidation Phase begin!
I'm going to leave you all with a quote I found that did make me laugh a little bit as I feel it's quite apt for me...and I'm sure my sister will agree with me...
"Be the kind of woman that when your feet hit the floor each morning the devil says "Oh no, she's up."."
Much love to you all! xxx
No comments:
Post a Comment