Time for reflection

Depression……. This is something I haven’t spoken much about in my blog but it is something that effects me. Not every day,  not as much as some people and perhaps not in a way that is visible to others but it still does.

A few people know, but I have been on antidepressants since my previous relapse in 2013. That hit me hard physically and the shock of being ill so quickly meant I didn’t have time to mentally prepare and suffered hard mentally too. With all the things going on I never quite got myself to the point of coming off the antidepressants, and to be honest I’m not sure I’m ready to yet either.

With me I tend to go into hibernation mode. I want to stay where I feel safe. I want to laze around and avoid all the things I should be doing and kind of hide away. Despite being someone that loves being around people I find it takes a lot of effort to organise seeing people (I don’t like making commitments – I find it easy to drop into a weekly catch up knowing I don’t have to go if I don’t want to, but I’m terrible at organising anything outside of this), going to special events, and parties etc. Like even today, new years eve, when I know I’m going to a small gathering of friends I am still deciding whether I feel up to going. Its that feeling of not wanting to go and having to put on the happy party face. I don’t want to sit here and cry, but I don’t feel like being happy and giggly so don’t want to go and ruin the party for others! Its not even that I want to mope, I kind of just feel more comfortable in my own company.

So as it is indeed New Years Eve I am sitting here trying to think of what I have achieved over the last year. What battles I have won and what positive things have happened. Here is when I struggle to focus on what I have achieved, not what I could have achieved if I hadn’t been ill. I also have to ensure I’m keeping the focus on me and my achievements, not whats going on around me and with other people. It is hard though when you see around you friends getting promotions, married, kids, new careers, new houses, etc etc. I have to just keep reminding myself that I beat cancer….. AGAIN!

But there are those what ifs…. what if I didn’t have cancer? What if I hadn’t got ill when I was 17? What would my life be like now? BUT I can’t think like that!!

So what are my positives/achievements for this year?

• Making it through chemo with a smile on my face (even though it was a slightly smaller smile some days)
• Keeping active through out treatment
• Fantastic trip to Cromer with HiP ladies
• Travelling to Ireland and Vienna
• Getting spiritual! – Getting into my yoga and embracing partner work…. and hugs!!
• Telling my story for Anthony Nolan at parliament to help fight for second transplants to be funded. And by doing so winning the patient ambassador award.
• Partcipating in the world mds day flash mob (and succeeding in learning the routine on the train there!!)
• NOT going back to work too soon
• Going vegetarian – one of the best things for my guts and hopefully saved a few animals in the process
• Craft –
  1. Completing (well its not complete but its usable) my square blanket and teaching myself to crochet properly
  2. Completing two wearable crochet tops
• Fitness
  1. Running the park run on new years day – 30:58
  2. Passing my level 2 gym instructor and freestyle step aerobics assessments
  3. Starting my PT and yoga teacher qualification
  4. Getting back into teaching Body Pump and choreographing my own freestyle step classes

And really these are all the bigger things….. what I haven’t listed are things like having the energy/motivation to cook my own dinner (or for the family) most days, doing my own washing, spending the majority of the day off the sofa, etc etc. The little things are sometimes the hardest!!

I recommend anyone feeling a bit down spends a bit of time to sit back and look at what they have done this year. NOT what you could/should have done, but what you HAVE achieved.

“The only time you should look back is to see how far you have come”

How far I have come

It seems crazy to think that this time last year I was packing my things (well I should have been) and preparing for my admission to kings hospital for my second bone marrow transplant. I was weak and recovering from all my previous infections but trying to make the most of the time at home before hitting the chemo.

Now I’m almost a year post transplant and most of the time I am feeling great. Ok things aren’t 100%. but they are a damn sight better than I thought they would be at this point! (if I was here at all!) Physically my main complaints are fatigue, skin gvhd and a few gut issues but most of the time these can be controlled by a careful balancing act of rest and diet. I am starting an activity/food diary currently to try and work out any trigger points for physical changes.

I’m starting to get back to a new level of normality. I’m able to pace myself well enough so I can do my gym classes, I’ve even been back teaching some body pump and freestyle step classes! I’ve even been training my brain by taking on a PT course and a yoga course! These are things I have wanted to do for a while and have finally decided that I feel ready to take them on. It is also proving to be a great test of my concentration skills. I have been finding that whilst studying I really struggle to concentrate for more than half an hour at a time, and even then I’m re reading sentences. I have slowly been getting better though and its been great to have this as an exercise before going back to work.

So what about returning to work? I have been incredibly lucky to have a great family support throughout my illness so financially I haven’t had to worry too much, but it would always be nice to have a bit more pocket money to play with! It has now been a 1.5 years I have been off work….. 1.5 years…. I will be honest and say I am a little bit daunted by the idea of going back for many reasons (will do a separate post) but it feels like time to start considering it.I have put the wheels in motion and should be discussing role options with wok in the new year, will update as and when I know!!

So its all onwards and upwards! Lets see what the new year holds!!

Any new years resolutions?

Also – how should I party on the 7th January to celebrate my one year bone marrow anniversary??

Here are some photos of me doing some of the crazy things over the last month:

 

Watch and wait

Just a brief one today from me…..I didn’t want to jinx it earlier on, to be honest i still don’t want to! However, my blood levels have been stabilising over the last few weeks. My platelets are soaring back up at 107 again. I am still neutropenic (have a very low immune system) but they are slowly creeping up. This means that I haven’t YET been admitted for my ATG treatment. It doesn’t mean I’m completely  out of the woods. My chimerism still hasn’t improved. However, it is fantastic news and I’m trying to enjoy my time at home!! My bloods will continue to be checked weekly and will have my chimerism re done in October to see if any improvement……. will just have to wait and see……

Post yoga weekend I’ve been sleeping like a baby so I’ve had a lot more energy floating around to try and focus on getting a bit stronger. Even been hitting it back up at the weights in the gym.

In other news I decided to attack my mop of hair today…… it was beginning to look like a mop head! Hope you agree it looks a lot better!!! If nothing else it looks like a hair cut, rather than just a grow out attempt. Might even go get some jazzy flowers shaved into my head or something! (before anyone panics I haven’t lost any length on the top so it is still growing, the sides will catch up later!!) One good thing…. when you realise you are bothered about your hair style then you know you are starting to feel a bit better 🙂

 

 

 

 

Emotional Release

When I started writing this blog entry on sunday I was sat on the beach at Woolacombe leaning against a rock, enjoying the September sun but trying to hide from the powerful wind. I was damp from the sea, covered in sand and shielding my eyes from the sand being blown around with a scarf wrapped round my head.

I hadn’t planned to go in the sea at that time, and certainly was not prepared. I had been walking down the beach and suddenly had the urge to get in the sea. Thought to myself I will walk back to the car in a bit to get my bikini and towel and then suddenly changed my mind. I didn’t want to wait. I didn’t care what was sensible. I wanted to go in the water then and there!!

Fortunately (for everyone else) the side of the beach I was on wasn’t busy so I stripped off and ran in!! It was the best feeling ever!! So invigorating! So energising! That true feeling of the waves crashing around you and washing away the stresses and emotions to somewhere far away…….

This weekend I was on a yoga retreat with Helena Bingham and crew a Natsley Farm in North Devon. The location was AMAZING!! Its such a fantastic house, huge spaces and its own heated pool and hot tub. I don’t think I’ve every stayed in a holiday rental quite so luxurious and in such a stunning location. Would HIGHLY recommend it for anyone wanting to go away in a bigger group ( http://www.natsleyfarm.co.uk/about).

It was also a great group of Helena’s friends, all with their own fantastic qualities and quirks 😉 It was so interesting to speak to people with completely different lifestyles/backgrounds but yet with one thing in common…. yoga. In a strange way you also open up more to new people in these environments too. I learnt a lot from the group with their advice and their ways of living. So many different hints and tips on things that could help with my various ailments, even simple things like adding some extra spices into my diet.

The weekend involved over 8 hours of intense yoga….. strong sessions on hip openers and shoulder openers…. Yin yoga with hideous 5 minute holds… breathing exercises… meditation…. Yoga nidra (finding that blissful place somewhere between consciousness and sleep where you are truly at rest).

The saturday/sunday afternoons were left unstructured for our own time. I found this all a tad overwhelming. There was no one to suggest I did anything, it was all my own decision. Did I want to go for a walk? Or did I just think I ought to go for a walk for exercise and to make the most of being there, rather than because I WANTed to?? Did I want to just chill out? Did I want to be in the pool? Did I want to read? etc etc…. Too many choices… not enough structure. I think I’m so used to planning out my days around hospital visits, classes, seeing friends that I don’t stop and think what I actually want to do in that moment. I just plan my days so I don’t have that opportunity. Then when given that opportunity this weekend, I really struggled!!

When you take all the stresses of everyday life away, what do you actually want to do?!?!

With all the choices and all the intense yoga sessions by the sunday afternoon I got myself in a bit of a jittery state! I was crying, but I didn’t really know why. I didn’t know what to do with myself! It was like the flood gates had opened. A couple of the girls were still around and chatted with me and helped to support me. Maria suggested I go to the beach, initially I wasn’t sure as I didn’t want to drive, but when I got there it was just beautiful. Coming down the hill into Woolacombe with the sun shining, it was just stunning.

This is what led to the skinny dip on the beach! I walked one way down crying, and after my swim and journal writing I walked the other way almost smiling.

Sunday evening/Monday things still weren’t quite right with me. I was still a bit jittery, and it was quite a tough journey home with bowel issues (probably purging the emotions fromt he yoga too) and bad traffic. But when I got in and finally relaxed in bed I had the best nights sleep I have had for aaaaaaggess!!! Even my garmin watch agrees with me!

So over the next few weeks I plan to set aside time to establish what I need to learn from this weekend. What I can take from this weekend… what have I learnt about myself and from others. What would I benefit from continuing in the daily/weekly routine. e.g. daily practice/meditation, eating a healthier plant based diet, spending more time being in the moment.

Focus on the here and now…..

 

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!

 

 

Drug cocktails

So it turns out that some drug cocktails are bad!

As I was taking the oral antibiotics I seemed to start feel worse every day I took them. This can normally happen but I’ve not noticed it quite like this. My diarrhea was watery and stopping me from doing things. My appetite was gone. I had a revolting taste in my mouth. All fairly standard antibiotic side effects. However, I also noticed i had tremors, my joints were aching, my muscles were cramping/spasming easily, i felt faint/dizzy, and just so so so tired.

Turns out that the antibiotic (clarithromycin) I was on effects the levels of Tacrolimus (immune suppressant) in your body.  And in my body it had over doubled it!!! So this might be an explanation to my more exaggerated side effects!!

I hate taking medication!!! They all have some form of side effects. And then it just gets ridiculous when you have to take a load of other meds just to get rid of those side effects.

So I have finished the antibiotics, and now we are trying to get my Tac levels back down to something normal in my body. Have already noticed an improvement over the weekend, so fingers crossed this will continue to improve!!!

 

Home and recovering

I managed to escape hospital on Saturday (after trying out oral antibiotics and dosing up on codine to help suppress my cough!) Apologies for not blogging sooner but I’ve been really lethargic and not fancied it.

It was a bit of a shock being admitted to hospital with so long of staying out, however as usual I fell into the routine pretty damn quickly! So advantages/disadvantages to being sent home early on orals:

Advantages                                                   Disadvantages

No bedpans                                                       Feeling safe & knowing staff will help

12 hours solid sleep (lush!!)                         Actually resting in daytime

No 6am wake up calls                                    Having a giggle with the nurses

No 8am bloodtest/breakfast                        Getting used to having no set routine

No more hospital food! ergh!!

What bothers you guys most about being a inpatient? As you can tell for me it generally revolves around sleep!! (There are definitely more pros/cons but my mind just wants sleep right now!!)

So how do I feel now? I’m slowly reducing my quantity of snot and the cough is dying down. The antibiotics aren’t sitting well, nausea and diarrhea making me feel a bit rotten (last day of them tomorrow!!!). Also my body is all wobbly from the effects of the infection and lack of food, but I’m getting a little stronger each day.

What happens next? I had a trip to Kings yesterday to see Dr Rice. Bloods are looking good, although neuts are slowly dropping a little bit. Bone marrow is looking a bit odd, apparently a lot of my cells are trying to produce neutrophils but failing to complete it. The CT scan of my sinuses and chest show some soft tissue just hanging around, don’t yet know if its just mucous or fungal or what! So quite a few questions to be answered. My case is going to the big MDT meeting (where all the big consultants sit around deciding what to do with me) next Tuesday and hopefully I will get a few more answers!!

In other news I have been embracing my sewing machine and finishing off a few bits and pieces. A kind of patchwork cushion, patchwork baby blanket and some juggling balls. Slowly getting more accurate and happy with my sewing. Also have learnt what would have been the better ways of doing things as I went along! Hindsight and all that…….