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