Letting go of the ego

Today was the first time I attended a body pump class since I had my first infection (this time round) in September 2015.

Now this might not sound like much to you guys, but it means a lot to me!!

I used to teach body pump/body attack and I absolutely loved it. My participants were fantastic and I loved the physical challenge too. I had got my weights to a great standard (enough to put some men to shame!) and I was really happy with my strength and physical appearance too.

I obviously had to stop teaching whilst I had all the infections/transplants as I could not maintain a class and was not fit enough to teach. However, I also stopped attending classes too. I hated the fact I couldn’t do my normal weights without having to stop half way through a track or just being completely exhausted! Ego!!!

Yoga teaches you to leave your ego outside the class. Don’t worry about what others can achieve. Don’t worry about what you think you should/used to achieve (even if it was the day before) just listen to your body at that specific time. Do what feels right now. Don’t push or strain. etc etc.

It has taken a while for this to sink in but i think I’ve got it now. I find I go to classes and I genuinely don’t care if the lady next to me has her legs wrapped round her head, I’m happy with what I can achieve and grateful I can do that. I push myself within my limits and just enjoy the class.

Today I felt ready for body pump. I left my ego outside. I explained to the instructor I would do light weights. I stuck to my plan, ignored what everyone else was lifting and only went to a maximum of 3.5kg on each side of my bar.  I managed to finish every track and I’m proud of what I achieved! 🙂

Sometimes its really hard accepting what cancer, infections and chemo does to your body and strength. However, the only way you get strong again is to suck it up and start from the beginning again. Its tough but its important we all do it to ensure we are fighting fit for whatever comes at us next!!

 

 

 

 

Mixed emotions

In my previous post I think I got a bit too excited about the good news (no cancer), and explain how i feel about the news I have now got to deal with. Inspired by Suzanara’s comment here is a list of the varied emotions I go through throughout the day!

Relief 

Relief at the knowledge there are no cancer cells. That the doctors feel they can treat the diagnosis i have. That the transplant wasn’t for nothing. That I won’t become a statistic that the NHS can use to argue that second transplants are not worthwhile.

Worry

About my prognosis. As I said in my previous post the bone marrow biopsy showed that my cellularity in my bone marrow had dropped quite significantly. This was something that the doctors were not expecting to of happened. This is why I can’t have the more simple and less invasive IVIG treatment. The situation I’m in suggests with the two donors battling it out it has had a pretty huge affect on my bone marrow, and pretty much I am at risk of losing my graft. Now ok the cancer cells haven’t come back, but if this continued and my cellularity reduced further I wouldn’t be able to produce my own blood cells. The graft would have failed, and I’m not sure there would be many options for me without further agreed funding!

About being guinea pig. I believe I am right in saying that this has only happened to very few patients, so I am one of the first to have this treatment. I’ve just got to put all my faith in the doctors knowledge to hope this will work, there most definitely aren’t any statistics we can consult, I will be making them!!

About having the treatment. When I previously had ATG I got on with it ok. My main complaint was being hooked up to a machine for 18 hours a day, a few nasty fevers, getting moon face from the steroids, and getting fat due to the steroids. But generally I wasn’t too bad with the treatment…… but I was young (or younger, 12 years younger!!) Maybe it will be different this time. Other patients I know have had horrific side effects from ATG and felt worse than they did on chemo, so who knows!?!?! Also I only had partial response to this treatment for my Aplastic Anaemia, so what if it doesn’t work?!?!

About getting an infection. As I am and with the treatment my immune system will be wiped out so I will be incredibly susceptible to infections. So far I have managed to fight all infections thrown at me, but it scares me how quickly things get out of control.

About the availability of DLI. My consultants are now checking with Anthony Nolan to see if there is any DLI already stored or if we have to go back to the donor to ask for more. If we have to go back to the donor to ask for more then the donor has the right to decline. Then what position am i in?? If we kill of all my t-cells then what happens if we can’t replace them??

Frustration

That yet again I’m putting my life on hold.

Currently I am now waiting on a timeline from the doctors. I know I will be in hospital for 2/3 weeks but I have no clue when. As soon as they have things sorted then I will be put on the waiting list for a bed, this could be any day/time! Usually you have to get down that day as well else you miss losing the bed! So this week I will probably pack my hospital bag and it will have to sit there until its time to go in.

This also interferes with making plans. Can I book to go to an event next week or would I already be going in? Will I be able to make the events I have already booked or do I need to cancel them? And the trouble is I won’t be sure of the answer until likely the day of or before the event, which is usually too late to book/cancel.

I thought the 2nd transplant would be my last lot of full treatment (minus infections) but now I’ve got to psych myself up for another long stay. I thought I was coming to the end, but now it feels like I’m back towards the beginning (2 steps forward 1.5 steps back type thing) .

This isn’t just 2/3 weeks in hospital and then done. This will again take months of recovery. Time spent waiting for my blood counts to come back up again. Time to recovery some of my strength from the duration in hospital (even if I make a huge effort to move around, you are still hardly active at all when confined to those little rooms). Time to feel like a normal person again.

Anger

12 years these bastard diseases have taken over my life…. 12 fucking years…… Yes ok I’ve not been bad the whole time, but I reckon at least a 3rd of that time has been restrained due to illness. I would love to just run away from it all!! Do the job i love, go out and enjoy myself, jet off on holidays without thinking about medication, take on responsibilities (mortgage, rent, pets) without having to think “what if I get sick again”.

Gratitude

To the staff at Kings and Peterborough hospital who are a great support at all times and have tried to magic up another solution. I know they have my back and its great to have trust in them 🙂

Summary

So yeah… hope that explains a little bit of what i’m going through at the moment…. I’m sure I have missed stuff out. But hows that for mixed emotions

(Also frustration for my family and friends who have to go through this with me, house me, feed me and do my laundry!!)

 

 

 

 

The waiting is over…..

…. and there are no cancer cells!! No leukaemia cells and no dysplastic cells (blasts)!! Woop woop!!

This is fantastic news, but it doesn’t mean I’m completely out of the woods. I still need to have further treatment but this won’t be quite as traumatic as full on chemo (I hope!!)

Now I’m potentially going to fall into techy haemotology language now so bear with me if I do (equally comment and ask questions if I have lost you!!)

So the reason they think my blood counts have all dropped is because of a little internal battle between my two donors*, here by known as donor 1(the bad guy) and donor 2 (the good guy). As part of a bone marrow biopsy they check something called your chimerism which is basically what % of your cells are donor 1 v donor 2 with the hope that the majority are donor 2. In my case my CD3 (produce t cells – part of your immune system) chimerism is nearly all donor 1 (around 80:20 split) so this is the part they are particularly concerned about.

*Note that if you have only had one transplant this would be your cells v donor cells!

To add to that the cellularity (% space in bone marrow that as stem cells in) of my bonemarrow has also decreased. Previously this was 70% and now it is 40%. This has reduced very quickly in just over a month.

Therefore the concern is that donor 1 is starting to take over, but donor 1 was rubbish so I’m not producing blood cells in the rate we would like, etc. And also donor 1 might bring with it my leaukaemia.

So now what do they plan to do with me??? Now I’m such a rare and unique person I don’t think this has ever really happened before!! So of course I’ve got all the doctors scratching their heads and wondering what treatment to give me. My doctor actually laughed when I asked her if the treatment had worked before in the past for others!! Silly me!!

The basic plan is to kill off donor 1 and give me a top up of donor 2.

To kill off donor 1 the discussed plan was a course of ATG – Anti-thymocyte globulin. This is a collection of either horse/rabbit antibodies which will kill of my t- cells and to stop the rejection of the bone marrow. (It is predominantly used for treatment for Aplastic Anaemia and I had 2 courses back when I was 17/18).Mostly nasty flu like side effects, 18 hours on a drip a day, and a few weeks as an inpatient.

The top up of donor 2 will come in the form of DLI (donor lymphocyte infusions). So it will be a infusion containing some white blood cells from the good donor 2. Risks here are mostly more GVHD.

This will hopefully give donor 2 a chance to become more dominant and take over my bone marrow fully, and hopefully restore peace and harmony! Thus allowing my blood counts to increase and me to be all better! (well that’s the plan anyway).

So basically  I just need to suck it up and do the shitty 3 week stint in Kings again….. A few months of DLI….. and then hopefully everything will be fine and dandy!!! Now just to wait for dates and plans from Kings!

 

 

The waiting game….

I HATE waiting for results. It is the worst thing for me and no matter what people say it doesn’t get easier with time. You don’t accept it’s going to be at least a 2 week wait no matter how many times you’ve had a bone marrow biopsy, especially when you know something is not right . How can I deal with the problem (mentally as well as physically) if I don’t know what the problem is?

Do you prepare yourself for worst case scenario????

Or do you pretend its all going to be fine???

Also I hate the uncertainty of when the test results will come back. Kings are great as they will ring/email me to discuss the results as soon as the results have come back. However, they never know precisely when the results will come back. So I feel like I want to constantly watch my phone and check my emails! Sadly as well the aspirate slides all clotted, so there is no results available from them (they normally come back after about 3/4 days and give good preliminary guidance on how things look).

So I’m becoming a bit of a stress head! I try not to actively think about it too much, but it is constantly at the back of my mind. For example can I make plans for next week or will i need to go in for clinic?

Also, my sleep has been affected. I’m exhausted and fall asleep almost straight away, but then I’m wide awake around 5/6am!! So not quite my usual routine of 9/10 hours sleep…. And due to the anxiety I’m getting lovely acid reflux and have had to start taking medication again for it (omeparazole and gaviscon).

Fingers crossed the results will be back for either friday/tuesdays big wigs meeting (MDT meetings) so they can discuss me and decide what to do! In the mean time I will try and keep myself busy, although not with brain using tasks as I have zero concentration skills at the moment!!!

Healing weekend

Despite some poor blood results on Thursday (neutrophils 0.8) I had a GCSF jab and the hospital didn’t argue about me flying over to Ireland. I can’t describe how happy I am that I got to make it!

It was a fantastic weekend. Seeing old friends and making new friends. Trying different types of yoga. Singing. Dancing. Meditating. Body massaging. Drumming. Chai tea drinking. Sharing stories. Vegan eating. Downward dogging. Womb yogaing Even Flying!!! Had one weird emotional/jittery moment after a shamanism drumming session but other than that I loved it all!!

My guts have never been better after a weekend of wholesome vegan food and my magnesium levels have improved massively. I’ve never felt so relaxed after an Aaaamazing massage. And in general I left the weekend feeling very happy and empowered to focus on following my heart more and to try and become more in tune with myself rather than following society.

Unfortunately yet again my weekend away ended with bad news. (Beginning to think I’m a bit jinxed). My neutrophils didn’t improve with the GCSF and a blood test at PCH on wednesday showed my neutrophils to be down to 0.26, so I was considered to be at a very high risk of infection. Also my hb and platelets had dropped a bit too.

Through some efficient organising from Carmel at Kings I was there on thursday getting hundreds of vials of blood taken off me and a good ole stab in the hip to see whats going on. Apparently there are two main options for whats happening.

1. My two coexisting immune systems (old donor and new donor) have decided they are no longer willing to live together and have declared war. Subsequently this would mean my bone marrow is understress and not able to produce the usual number of blood cells. This should be able to be solved with Imunnogloblin therapy which acts like the riot police (should act!) and calms everyone down
2. The cancer has come back…. fuck knows what happens if this is the case so keep your fingers crossed!!

Results from the bloods and bone marrow should hopefully start creeping in over the next few weeks…. I will keep you posted!!

Can I get a refund?

Back to reality with a bump yesterday…… off the plane and headed straight for Kings hospital the next day.

Getting the train to kings felt odd yesterday. I’m not normally bothered by my hospital trips but I was restless on the train and had a moment of dread when walking through the door. I think it was after having had a break abroad I just didn’t want to return to normal hospital life!! But whatever the reason i was not happy with the prospect.

To my pleasant surprise I walked into find only 1 person (yes , 1 person!) waiting in the phlebotomy department in Golden Jubilee wing. The lowest I have experienced prior to that is around 25 i think!! So despite having an issue with not all blood tests being ordered I was able to get to haem outpatients, get them ordered and have my blood test in half the time it normally takes. Plenty of time to go get my nails done! 🙂 I would say it was nice relaxing pamper time, but there was a screaming brat wondering round waiting for her mum to be finished which kind of disturbed that.

So the consultation with Kavita was a bit mixed…..

Firstly they want to try and address my mixed chimerism. My lymphocytes are still showing to be mostly my old donor, not my new one. Now that my GVHD has calmed down then the plan is to slowly reduce my immune suppressants (tacrolimus) to see if this helps to bump it up a bit. This comes with further risks of GVHD (hence waiting till mine had calmed down). The GVHD could affect either or all of my guts, eyes, mouth, skin, lungs and liver. Hopefully with the slow pace this will reduce the likelihood of this happening!

Secondly they have found a genetic defect in my bone marrow samples, again! Prior to my transplant I was shown to have monosomy 7 defect. My understanding is that this is when either part of chromosome 7 is damaged or missing. Combined with MDS it is a huge indicator to the risk of developing Acute Myleiod Leukaemia as I started to do last year. (https://bloodwise.org.uk/treatment-and-side-effects/international-prognostic-scoring-system-mds)

This time I have got an additional chromosome 7. From my research (google!!) it seems that this sort of defect is linked to developmental disorders so no idea what it means for me. Also, the doctors aren’t sure if its something I developed or if it came from the donor (the donor has refused to be tested or we can’t get in contact with her). Which leads to them not knowing what the implications of this defect are. So basically the doctors have put me on a watch and wait. IF something untoward happens with my blood counts they will or anything else then they will do another bone marrow biopsy.

Well as most of you know I can be a bit of a control freak on some aspects, especially hospital care. I want to know whats happening and why all the time. This whole “watch and wait” business makes me very anxious. At the moment we don’t know whether this defect is likely to do nothing or if it could have strong impact. For a moment I found myself wishing it was just the same defect as before because at least we would know what was going on and be able to do a plan of action to deal with it. Of course I don’t want this as the likelihood is that I would be fucked but your thought process can be a bit strange with news like this!!

So i think teamed with tiredness from my mini holiday this but me in anxiety attack mode. The train home was hideous as I wondered if I was going to be sick, with hot flushes, etc. Made it home and into bed but still managed to vomit! Feeling better now, a bit tired and delicate but think I purged a bit of my anxiety at least.

All this hospital business feels never ending……

My bone marrow appears to be faulty, please can I get a refund?!?

 

Ooooohhh Vienna!

I flew out on friday for a girly trip to Vienna for the weekend. Its the first time I’ve ever been to Austria so I was looking forward to experiencing it.

First impressions…. the public transports and streets were spotless!! It was so so sooo clean compared to London.

The apartment was amazing. I found it on air b’n’b and had been really worried about it. They were offering a discounted rate as apparently they were still being decorated, although there wasn’t much sign of this!! The apartment was part of an old university building with marble pillars and stair case, high decorative ceilings, brand new kitchen/bathrooms, and recently painted. It was gorgeous!

We were pretty lucky with the weather, 35 degrees most of the time! It did start to get a bit suffocating though so we were grateful for the rain sunday! We had to spend most of the days hiding in the shade!

It was a great trip though and we managed to see most of the “top 10” sights. I made a massive effort to pay attention to my body, and went home late afternoon for naps. We still did a crazy amount of steps, almost 20k most days!! Good work out for the legs!

The best thing was having a weekend away with the girlies. Where nobody was working and everyone was able to chill out and catch up properly for the weekend. Everyone is far too busy these days!!

However, there are some worries and extra expenses when travelling abroad. Here are a few tips i would offer:

1. Ask your consultant/clinical nurse specialist to provide you with a letter detailing your diagnosis, treatment plan and list of drugs. Providing phone numbers should anything happen
2. Travel insurance…. now this can be really pricey. You are best off looking for a medical specialist insurance company if normal companies won’t cover you. Most normal insurers have a sister medical company they will link you to. I will be honest and say that for Ireland i’m just doing hand luggage, not get travel insurance and hope for the best!! I’m staying with a friend so hopefully she will be able to help sort out any issues if needed!!
3. Drugs… keep them in your hand luggage just in case hold luggage is lost. Keep with them any medical letters too. What I did was put them all into pill boxes and then cut out all the fronts of the boxes to prove they were for me and the name of the drug.

Glad to be home for a little bit before jetting off to Ireland for a yoga festival and to see some friends!! 🙂