The Only Thing Greater Than The Power Of The Mind Is The Courage Of The Heart.

So the last couple of weeks have been a bit crazy with hospital appointments - as ever! Hence, the delay in blogging... Standard AmBisome appointments at Maidstone Hospital every Monday and Wednesday and some Fridays (when I'm not at the Marsden). Then appointments at the Marsden Thursdays and/or Fridays for chemo +/- blood products too and for check ups with my consultant.

Have had to have a fair bit of blood products of late. Generally every Friday for the last couple weeks have had to have red blood cells as my haemoglobin has been below 85 by that point. Last week Maidstone found it to be 77 on the Wednesday and wanted to keep me in over night, via A+E, for red blood cells because they didn't have room in their day units for me to come in for treatment the next day. Absolutely ridiculous - such a waste of a bed! Luckily thanks to the amazing nurses in the Charles Dickens Day Unit my consultant was contacted just in time to over rule the registrar's bizarre decision and I was able to go home to my yummy enchilada dinner that was waiting for me! It did help that I promised I'd contact the Marsden the next day to try and get treatment with them, but luckily for me they were sensible and since I had no symptoms of having low haemoglobin they were happy for me to wait until I went up for my chemo the next day.

And what a day that was! Got there at 9am for blood tests (1hr wait for results), Pentamidine (1hr), AmBisome (1hr), red blood cells x 2 units (totalling 4hrs), Vincristine (10mins), Asparaginase (IM injections x2) and Zoladex (SC injection). So when I finally left at 6pm, I had managed to watch a fair bit of Breaking Bad Season 4 and the first series of The Trip. Not bad going really! I did have to go back up for blood tests and platelets on Sunday though - my consultant is wanting to keep a close eye on me this week since it is "potential for infection" week... So have had to have blood tests on Monday and Wednesday at Maidstone too! Surprise surprise I'm still neutropenic though... Nothing changes there! Tomorrow I'm up at the Marsden again for more blood tests, Vincristine, AmBisome and any blood products I may need. That's my last lot of chemo for this cycle then before my bone marrow on the 7th May! My it has gone quickly!

I discovered this week as well that Maidstone had been giving me twice the dose of AmBisome than my consultant had prescribed. In their defence their protocool is to give the dose they were giving me to adults receiving chemo; however, its not what the Marsden wanted me to have so luckily this has since been resolved. There is a possibility that this could have contributed to the drop in my haemoglobin and platelets that I have been experiencing - not that this can be proved of course - but either way I'm still happier to know that this has since been sorted!

On an unrelated hospital note, I've had a lovely couple of days. Phil and I saw Sean and Kath on Tuesday evening and had a good catch up about their wedding! We also popped up to Potters Bar on Wednesday morning to finally sort out the last of the house stuff - feel terrible it has taken me so long to finally drop off my keys but has been difficult to find a day when someone could drive me up and wasn't ill and I was feeling well enough/not having to be at a hospital! Most importantly though, I got to have a good catch up with my lovely uni friends! Was so good to see them and hear how everything was going and that so many of them have jobs already lined up! So happy for them all that everything's finally falling into place! :D OSPVEs/OSCEs did sound hideous though but I have no doubt they've all done amazingly well!! Couldn't get over how much I missed Hawkshead and all of them though. Was so sad to leave :( just want to be back there already - three and a half months away has felt like an eternity...

On an even more positive note, it is Lottie's 21st birthday this Sunday, which nearly the whole family are coming down for - exciting! :D I hope she is looking forward to as much as I am! And she is due to do her skydive on Monday! She has raised an absolutely incredible amount of money for Leukaemia and Lymphoma Research - so far she's at £2898.11 - but wouldn't it be awesome if she made it to £3000. So for those who haven't, please donate! Her Just Giving address is https://www.justgiving.com/Lottie-Haynes and every little does help! And a massive thank you again to all those who have already donated!! You are all amazing!

Hopefully there will be another blog update in a couple weeks when I have my bone marrow results or if I'm feeling eager after Lottie's skydive (provided it goes ahead!)!

Much love to you all xxx

There Can Be No Triumph Without Loss. No Victory Without Suffering. No Freedom Without Sacrifice.

So Easter has been and gone and it's been a good couple of weeks since the last update. This cycle of treatment is particularly intense due to the fact my MRD came back positive, so it came as no surprise to my consultant that I rocked up at the Marsden on 2nd April with an infection. In fact a couple of weeks previously he had even double checked with me that I had a plan in place for that precise situation. So I shouldn't have been surprised either really.

However, after the previous week's treatment of Vincristine and Peg-asparaginase and some sessions of anti fungal at Maidstone, maybe I had eased myself into a false sense of security. So when I turned up at Maidstone Hospital on 1st April for my Ambisone appointment and they found I had a temperature of 38.6, it was a surprise to say the least. Yes, I hadn't been feeling 100% that day and yes, I thought it was just due to my haemoglobin dropping, but I had been taking my temperature at home so wasn't entirely prepared for a week long stint in hospital.

Maidstone were very good at getting blood tests and cultures done (as they are always concerned a peripheral or central line can be the cause of an infection) and getting me through A&E to a side room where I could get IV antibiotics. I then got moved to a side room on a ward, where, after a pretty rough night, I was then transferred up to the TCT ward at the Royal Marsden. Luckily the tests Maidstone had done came back pretty swiftly as an E Coli infection that was sensitive to a couple of antibiotics that I was then put on (in addition to the broad spectrum ones I'd already been started on). These types of infections are fairly normal according to my consultant, since the intense chemo reduces the natural protection your gut wall has against its own natural colonies of bacteria (which you very much need to survive). What essentially happens is that the bacteria (which normally doesn't harm you and just sits nicely in your gut) manages to cross into the gut wall and into the blood - cue neutropenic sepsis. So you can try your hardest to avoid an infection, but unfortunately you can not and would not want to sterilise your gut. You'd have thought my mum would have been pleased, therefore, that the whole thing was completely unavoidable and that she had not in fact poisoned me!

Chemo continued regardless of the infection since the main aim is to kick this Leukaemia's arse, after all.  And after a week of feeling extremely rough and being given fluids (which my body kindly retained so I managed to put on 6kg in 2days!! Cue the return of the jelly baby appearance), IV antibiotics, and a plethora of other drugs, I was finally discharged. So Easter was nicely missed, as well as some glorious weather, and any potential time I had hoped to spend with Phil gone. The best thing, however, was the evening I got home I managed to drop a wooden stool on one of my toes. So now, I'm even more crippled. I can't get out and go for a nice walk or anything, or drive, because my toe is purple. Things just keep getting better! I also, very sadly, missed Sean and Kath's wedding. What with my neutrophil counts generally plummeting, a hospital appointment, Phil having a cold and then - the toe - I unfortunately was destined to not be able to go... :( It did look like they had a beautiful day though, and they were so lucky with the weather! I'm just sorry to have missed it.

The toe...

This week entails some more Ambisone appointments at Maidstone Hospital (Mon, Wed, Fri - standard), and a trip to the Marsden for a clinic appointment with my consultant on Thursday. And hopefully trying to not be an inpatient again for at least another couple of weeks. (I have been warned already by my consultant that another trip in with another infection is probably likely at the end of April. - oh yay...) All apparently normal for this kind of intense treatment! Lets just keep everything crossed it's all working!!

Anyway, I do apologise for the rather uninteresting and quite moany instalment this week. I do, however, want everyone at uni to know I am thinking of them all with their OSCEs coming up. I wish you all the best of luck, though I'm sure you don't need it, as from what I can see from all the pictures, you are all practising your socks off! I really am hoping to come up and visit at some point, but when that is likely to be I am unsure. It seems planning anything just ends up badly at the moment...so will have to wait and see!

Much love to you all xxx

See Our Family, And Feel Better About Yours.

Right, so indeed it has been a while since my last blog. Unfortunately, the last two weeks have been pretty relentless! And not in a 'I've been enjoying myself and doing fun things' kind of way...

So, a quick catch up since I began my Consolidation treatment. The IV cyclophosphamide went well - I'm mainly getting my chemo etc. as an outpatient in the Children's Day Care Unit now, which is a lot nicer than Bud West I have to say! They have a room especially for teenagers and young adults, which is decked out similarly to the Teenage Cancer Trust Ward. It even has its own snack menu! (Got to get a reference to food in somewhere!) But most importantly the nurses are just as lovely as everywhere else! :) I also had to start my Cytarabine that weekend, a four day course of subcutaneous (under the skin) injections, which I do myself. Nothing to worry about there - especially now I have the cold spray - definitely takes the sting out the needle! Did have a major set of headaches that weekend though, not sure whether it was an overdue couple of migraines/side effects of chemo/dehydration or all of the above, but two half days in bed wasn't fun - especially on Mother's Day! :( Dad very kindly did the evening meal, which was an amazing stuffed pork roast, and I'd pre-made a marble white and dark chocolate cheesecake the night before luckily! 

White and Dark Chocolate Marbled Cheesecake

So the afternoon wasn't too horrendous for Mum! She did seem to enjoy her pressie, George Ezra's album, at full blast though - during my migraine might I add! 

Last week involved heading up to Maidstone Hospital for a blood test (luckily able to get non-chemo stuff done at Maidstone now I'm an outpatient, yay :) ), which wasn't too bad - and I managed to drive there and back. I had Mum for company just in case I couldn't manage but was ok! Still not going to tackle long journeys for a while though, I do get tired so quickly... I had another intrathecal chemo injection on Thursday, along with Pentamidine in a nebuliser. This is to replace my antibiotics I was receiving at weekends to prophylactically cover me against Pneumocystis Pneumonia. (It's a nasty pneumonia people who are immunosuppressed are at high risk of developing.) The antibiotics would cover me for it, however, my consultant was concerned they were causing my neutrophil counts to remain low after my chemo. So now I have this Pentamidine once a month instead! I also had another four days of Cytarabine over the weekend, another stinking Migraine on Saturday. I had to go up to the Marsden that day too for some packed red blood cells as my counts were low on Friday when I went up with Phil to pick up my Cytarabine :(. I am very much neutropenic now as well - my count was 0.09, so very high chance of an infection occurring, which means staying in, away from crowds and busy places, and eating the 'intense' neutropenic diet and not out/dodgy takeaways...So it was a good job I had that curry when I did!!

Trying to get over a Migraine whilst receiving 
pRBCs - best way to spend a Saturday?

More concerning, however, last week was the fact that Lottie got ill. From last sunday she wasn't feeling good, so went to A&E, with suspected appendicitis, after seeing the GP on Wednesday. Unfortunately, after many tests and checks, she was sent home and told that if her abdominal pain got worse to return the next day or if she still had it on Friday. Thursday it got worse, and due to her not wanting to give me anything nasty (bless her!) returned to A&E for further tests. They kept her in on fluids and until they could rule out anything bacterial nasties, but even after all this and being in until Sunday morning, the problem was still not resolved, and she still doesn't have a diagnosis. She is still really unwell and went down to the GP again today, having been off since she got out of hospital, and they are going to run some more tests. So this week I've been trying to look after her when I can! Just felt so sorry for my poor parents last week - with Dad with me at the Marsden, and Mum with Lot in Pembury - you couldn't write this... Our family really needs its own sitcom or something...we're giving Eastenders a run for its money at the moment!

Poorly Lot with Nurse Flo

Then to top it off this week, I wake up Monday with a sore throat, as does Dad. I go up to the Royal Marsden for my Ambisone, and MORE packed red blood cells! Woop... And the next day, Dad has a stinking flu-like cold!! :( 

Poorly Dad in his SARS mask

The Marsden don't seem overly concerned about my sore throat (since most likely viral in origin, and I'm already on antivirals). They just reinforce that I should take my temperature regularly at home so that if a get a temperature spike I know about it and can get myself to a hospital sharpish for some good old IV antibiotics. So to avoid all the diseased/possibly-diseased members of my family, and because I haven't been round to Phil's in a while, I go round there that afternoon for a lovely home cooked (by Phil!!!) dinner of enchiladas, and very yummy they were too! He is good at this cooking lark - just needs some more confidence I feel :).

Yesterday, I was able to have my next lot of Ambisone at Maidstone Hospital and got my sore throat checked again there, as by this point it was really painful to swallow and felt quite swollen... All goes well and I got sent home on some oral antibiotics for cover and told to come back in the next day for a proper prescription (as was late in the day by this point) and some Chlorhexidine mouthwash. So today Phil and I return, and end up seeing a different doctor who wants me off the antibiotics (as he doesn't feel they're necessary, as it's most likely a viral infection), but does send me home with the Chlorhexidine mouthwash and another one that reduces inflammation and has a local anaesthetic in it, so I'm not in constant pain. Good stuff! Apart from the Chlorhexidine mouthwash is beyond foul. But anyway...I'm back up at the Royal Marsden tomorrow for my next onslaught of chemo and other things... Next week is looking fairly busy in terms of appointments and seeing people so I imagine the next blog update will be around Easter! Hope you all have an enjoyable one! :D

Much love to you all xxxx

Grab Life By The Ball.

So, it would appear I have a lot to catch you lovely people up on since Thursday!

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.

Healthy Quinoa and Fajita Bake with Sour Cream and a couple of Baby Gherkins

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

In Space No One Can Hear You Scream.

So, I didn't think I'd be writing another blog so soon, but I feel everyone needs a quick update on the last 24 hours. 

Yesterday, I had to go back up to the Royal Marsden for blood tests and my PICC line to be flushed and the dressing changed, another bone marrow aspirate and, I thought, the beginning of my consolidation phase. Bloods were soo much easier now I have the PICC line in! No stabbing necessary! And the bone marrow aspirate wasn't bad at all as I had lovely sedation again! Only problem was my neutrophil count had dropped again to 0.52, so they weren't happy to give me the intrathecal chemo they were planning on doing, so I haven't started my consolidation phase yet. They want my neutrophil count to be above 0.75 and platelets above 75 (which they are) before they start that phase, so bit of a waiting game now!

I did receive the news, however, that they had received the results for the minimal residual disease test on my bone marrow from Barts. Now, a 'quick' explanation as to what this is:

Minimal Residual Disease (known as MRD) is a post-treatment condition associated with cancer, specifically leukemia. The condition refers to small numbers of cancerous cells remaining in the body’s tissues, and not being eradicated by treatment. It can occur in patients part way through treatment and also in patients thought to be in remission (meaning that they show no signs of cancer post-treatment). MRD is the most significant cause of relapse in cancer patients following chemotherapy treatment.

How was MRD discovered?

Several decades ago when leukemia was first treated, many patients would appear to respond well. Chemotherapy would be administered in much shorter sessions than is the case now, for weeks rather than months. But it was effective in destroying most abnormal, cancerous cells. The patient would go into “remission” showing no signs of disease. However, patients would be left with a tiny number of cancerous cells and after a few weeks or months, symptoms would reappear and patients would relapse.


Tests were conducted on cells affected by the cancer (usually in the bone marrow) following treatment to try to confirm that the cells were normal. Unfortunately, these tests relied upon microscopes and when leukemic cells are viewed in this way, it is impossible to tell them apart from normal immature white blood cells. Therefore, leukemic cells regrew and the patient relapsed.


Through genetic testing, scientists determined that leukemic cells found in relapsing patients were descended from the same cancerous cells which first brought about the disease. So, the name Minimal Residual Disease was given to indicate that the condition is caused by minimal numbers of remaining, or residual, cancerous cells in the body.

How has technology helped the fight against MRD?

With recent advances in scientific knowledge and medical technology, it is now possible to conduct much more accurate tests to detect residual cancer cells after treatment. Even a single leukemic cell in one million normal cells can cause a relapse as cancer cells multiply uncontrollably. So tests with this level of accuracy result in a greatly reduced risk of relapse following chemotherapy and consequently a far greater rate of survival. Whilst most research into MRD has been with leukemia patients, it is hoped that other cancer treatments may also benefit.

How significant is MRD testing in fighting leukemia?

MRD is the main cause of relapse in leukemia patients, but testing for this condition has become an important part of establishing a more accurate prognosis and fighting the cancer itself.

It was found that if a patient’s blood or bone marrow were tested at certain stages after treatment, MRD test results could indicate how well they were recovering and determine how likely they were to relapse. Patients with less than one leukemic cell in 100,000 had a very slight risk of relapse, whereas those with one leukemic cell in 1,000 had a very high risk factor.

Whilst this may seem obvious, it has opened up the opportunity to provide those patients who are at high risk of relapse with alternative treatments, hoping to reduce the risk. It has also proved helpful in the very early detection of recurring leukemia in patients several years after an initial attack.

Now, unfortunately, although my initial results showed that I have no leukaemia cells and that I technically am in remission, my MRD results have come back as positive. So, there are very minute amounts of leukaemia cells still hanging around my bone marrow. Now, although this means I have an increased chance of relapsing, it more importantly means that the treatment I get is reassessed so I get a more intense consolidation phase to make sure we knock all those little bastard leukaemia cells out! Whereas before the consolidation phase was going to be 5 weeks of the treatment I had explained in my last blog, it is now going to be 9-10 weeks of a very similar protocol but with more Vincristine and Pegaspargase thrown in for good measure essentially! 

Although this isn't the best news I was hoping for, it is simply another hurdle, which we knew could happen. On the plus side - I'm home again for the weekend! And I get to see my lovely Auntie Boo on Sunday! Monday does involve having to go up to the Royal Marsden for more blood tests again, however, and for a chat with the consultant, but I think I can manage that!

Hope you all have a lovely weekend too! Much love to you all xxx