Some Memories Are Best Forgotten.

Well, the last two and a half weeks have been a bit eventful. I think I jinxed myself well and truly by saying in my last blog that I was likely to be very bored...Mind you, I was being hopeful that this cycle of Flag-IDA would be as simple as the last - how wrong was I?!

So, the night of 6th July (after my last blog) I spiked a temperature, which I was expecting as last time I had an infection exactly the same day post chemo, etc. I was pretty quickly moved to a side room; however, I wasn't expecting to still be spiking temperatures a week later. The antibiotics I was on were obviously not helping and my antifungal got changed too, in case that was the cause of the infection. I had two bacteria present in my blood and a UTI to boot, and following many chest xrays, a chest CT, and crackles present over my chest it was obvious the infection had got into my lungs. I also had to have a head CT as I had visual disturbances and headaches, but this was put down to the change in antifungal, and have been fine since. To help treat the pneumonia I had regular physio with a machine called 'the bird' that helps force oxygen into the bottom of your lungs to help open up the lobes that are affected by the pneumonia and get up some nice amounts of phlegm. Because of the anticoagulants I've been on for the blood clots, and because my platelets were low, I was also coughing up blood, which probably contributed to the introduction of the bacteria into my lungs. After being put on oxygen, it simply wasn't enough to keep the oxygen saturation in my blood high enough, so I had to be put on another machine that forced oxygen into my lungs, again to open up the affected lobes. It also helps by humidifying the oxygen to aid transport of the oxygen into my blood in the lungs. My PICC line had to be removed as well, as they thought it was harbouring the infection, so I was back on cannulas, which are simply impossible to put in me now - I managed to have one decent one for 9 days that bled back(!), but that eventually gave up the ghost and I needed another one.

By this point I was feeling pretty weak, and there was talk of me possibly having to move to the 'step up' unit in the Marsden, where you receive one-to-one nursing care (similar to a critical care unit). This was last Wednesday, and when Dad came to visit, he could see how much I was struggling. Mum came up to stay with me (thank you so much to Alicia for giving her a lift up!) and helped me through a really rough few days. If the whole pneumonia thing wasn't bad enough, the new antibiotics (that were finally working!) were making me feel sick the entire time as I needed them three times a day, and the antisickness I was on were simply not working. I felt rough enough from not being able to breathe properly but considering I couldn't eat properly either, I was hardly able to move without exhausting myself. Finally, by the Monday I had turned a corner and was no longer feeling sick thanks to a pump that constantly administers a strong antisickness (that does make me feel out of it all the time) but means I could finally eat properly again. They tried to put a central line in my neck on the Tuesday afternoon as they couldn't get bloods out of my new cannulas and they would inevitably give up at some point; however, naturally with me, it didn't go to plan and they weren't able to place it. I now have a thrombus inbetween the carotid artery and jugular on the right side of my neck in the sheath that surrounds them both. This is causing referred pain down into my chest and my shoulder. It has improved over the last few days; however. The following day they were going to retry putting a neck line in but in the other side, but due to the traumatic experience of the previous day, the anaesthetic team decided another PICC would be better. I would have had one earlier, but there was literally no one on the 'official books' available in the hospital to do one as they were all on annual leave. One of the lovely nurses in Minor Procedures is trained to do them; however, so she said she would do it first thing. The procedure still took 2hours and 4 attempts with the anaesthetist eventually having to place the cannula and guide wire, but the main thing was the PICC line was finally in! The same day, I had to head up to the Royal Brompton Hospital for a echocardiogram (ultrasound of my heart), as one of the bacteria present in my blood can sit on the heart valves and cause them to be leaky (endocarditis). I am still waiting on the report from this, as this will determine whether or not I can come off the antibiotics and therefore, antisickness. If I can, then hopefully I will start feeling back to normal again soon, and hopefully be home soonish, and as I'm now off oxygen, that's all that is holding me back at the moment.

My neutrophil count is 0.6 today, so normally that would mean I could go home, but due to everything that is going on I'll be staying in a few days yet. I just need to have an ultrasound today to check my arm (as it's quite swollen from the PICC attempts) and my neck (from the neck line attempt) for clots. But the main thing over the last few days has been trying to catch up on sleep. I'm absolutely exhausted from two weeks of very disrupted sleep and long, stressful days of procedures. But once I'm back home I'm sure I'll recover quickly.

I need to take all the time I can to rest and recover when I'm out as I'm probably going to be back in on 21st August, as I have a stem cell donor!!! Apparently they're a 10/10 match and we're currently looking at cell day being 28th August, so I'll be needing to be in a week beforehand for the high dose chemotherapy and radiotherapy. I'll be finding out more about the process next week at a couple of appointments, so intend to do a blog about it all then to answer everyone's questions!

Anyway, hope you are all well, and that the final years had an amazing grad ball and graduation ceremony! Was able to watch the graduation on the live stream - very proud of you all!

Much love xxx

You're Never Quite Ready For What Life Delivers.

There's quite a significant side effect to all this that so far I have side-stepped in discussing on my blog, but I feel the time has come to talk about it as it is such an important issue - and that's fertility. As a vet student, fertility is something that is discussed a huge amount - from the importance in all farm animals (dairy cows and their poor fertility especially), to companion animals and the importance of neutering, to horses and their stud management! I have to say, therefore, how surprised I am that fertility is an issue that I feel has been minimally discussed throughout my treatment. Maybe this has been because my approach to my diagnosis has been with the aim of remission regardless of side effects, with minimal delays in getting there. However, I feel this may not just be something that I have experienced, and looking back on would have maybe appreciated more support with.

From day one, the nurses in TCT were very good at discussing side effects and concerns I had, but I never felt the need to speak to a specialist about fertility. Prior to starting my initial regimen I was informed that the chemo would increase my risk of being infertile only by a few percent above the national average. This didn't seem to phase me too much at the time. I did ask if options for freezing eggs, etc. were possible but was informed that this would delay my treatment by quite a long time so wasn't recommended. From my experiences at uni, and common sense, this made a lot of sense to me. At the end of the day, I want to be rid of this condition.

I then had to start my consolidation, which was a far more intense amount of chemo, and included drugs that affect fertility a great deal more (namely cyclophosphamide). So, again, I was informed that my risk of infertility would increase yet again. Delaying my treatment was still not an option, so seeking a fertility referral was still pointless.

However, now that having a stem cell transplant is being recommended, I was lucky enough to be offered a referral. Part of the stem cell transplant process involves radiation therapy, and depending on your age and the amount of radiation you receive significantly affects whether you will have permanent infertility afterwards or not. Now with my condition, full body radiation therapy at quite a high dose is pretty much guaranteed. I am under 25 years old, which goes in my favour, but regardless, the radiation therapy is likely to fry everything. As a result, my consultant very kindly referred me to a fertility clinic to discuss my options.

My experience at the clinic; however, wasn't the best. My amazing, ever-supportive boyfriend came with me, but the consultant's approach to the appointment left a bad impression that will stay with me. He went through my options, which I was already aware of to be fair, but essentially said that he wouldn't recommend I freeze embryos as it can get griefy if partners split up (his words actually were "if you run off", aimed at Phil). I can see his point, but equally he didn't ask how long Phil and I had been together (7 and a half years...), and even said that his opinion would be different if say, we'd been married four years and trying for kids for two already. I felt very much judged and that he'd assumed certain options 'weren't for me' because I was young (for a fertility clinic patient) and single. Freezing eggs was then regarded as my next best option, the process for which takes two weeks, but what with admin and paperwork would take nearer a month. The NHS would have to approve the funding for this but at least it is offered - to my amazement! Finally, there is also using donor eggs or adoption/fostering. I was informed at the appointment that using donor eggs costs about £6,000-7,000, but having done some research I think it's more like £10,000. But either way, there are options out there. So all is not lost!

Having spoken to my consultant at the Marsden, his main concern is obviously to keep me in remission and get me onto my stem cell transplant. And I have to agree with him, so although it would be great to have the opportunity to freeze eggs, my concern is potentially having complications from the process that would then cause me to delay chemo/transplant, which I wouldn't forgive myself for. Also, I know that my condition isn't supposed to be genetic, and chemo isn't supposed to affect eggs etc., but I just can't help there being a tiny amount of doubt in my mind... I mean, how often do we think things one minute and then a research paper disproves it later, and our main problem at the moment is that we don't actually know for certain either way.

 
On a different note! Since my last blog I have been able to catch up with a good few friends, which has been brilliant! I have also been readmitted for another Flag-IDA session, and after my chemo week was allowed home for four days whilst I waited for my counts to drop! :O So, I was very lucky to get the chance to meet up with the lovely (and now qualified!) Grace for lunch :) - was really nice to catch up properly! Can't wait to be able to go visit her and her new puppy in a couple of months! The good news today is that my counts have indeed dropped and I am back in for some R&R whilst they come back up again - so, if anyone is at a lose end, I am up for visitors ;) I have even brought my research project stuff back in with me for when I get bored, so do feel free to save me from myself!

Much love to you all xxx