Life on the bay

The waiting game ended on Tuesday afternoon when I found out I had a bed on a four bed bay to start my chemotherapy. Now given how much time I have spent in hospital you might be surprised to know that I have never had to stay in a hospital bay before (I had a double room once for a few days but that was it). I always had my own room, usually down to being neutropenic (low immune system). (To be honest I’m still not convinced being post 2nd transplant that I should have been allowed in a bay – I know I’m not currently neutropenic, but my immune system is still greatly compromised after all the treatment I have had.)

Being in a side room can sometimes feel a bit lonely, but being on a bay feels like the complete opposite!! There are the other patients to chat to. There are always hospital staff coming and going. And between 4 patients someone always seems to have a visitor. At the start of the week this was quite nice way to pass the day, after a few doses of chemo I very much changed my mind!!

If you have been reading my blog a while then you will know that I’ve never really appreciate loads of visitors whilst I’m in hospital. I find chit chat hard work when I’m feeling poorly from infections or chemo. So I usually have very minimal visitors so I can just rest between being harassed (treated…) by nurses/doctors. The time I like to have visitors is when I get home, as it can always get a bit lonely then.

However on the bay I couldn’t choose what went on with the other patients. I had to endure all of their visitors and all the nurses coming to see other patients as well as me. By my final few doses of chemo I was getting headaches, etc and I just wanted to rest but being such a light sleeper it just isn’t possible with all that going on!! Luckily the doctors/nurses arranged that I could have home leave over night so thankfully I was able to get a decent nights rest at home at least. I think I would have lost the plot if I was here over night too!! (Sleep is so precious to me and I really struggle to sleep when sharing a room with friends, let alone a room full of strangers!! I’m a very light sleeper and pretty anxious sleeper – lately at home I have been using quite a lot of sleeping tablets to help me drift off)

Also there is no privacy on a bay!! I know all about bed 17’s drama with loose stools combined with a colostomy bag….. bed 15’s hallucinations……any private conversations involve doctors/nurses pulling the curtains round but I really don’t understand the point in this?? We can still hear every word that is being said! No matter how hard you try not to listen!

But anyway…as I type this my 5th dose of cytarabine is pumping its way into my system. I am very grateful that so far I am suffering with minimal side effects. I’m getting tired and achy and suffering with some headaches…… so kind of a hangover type feeling. The anti-emetics are so far doing their job and I’ve not even really suffered with any nausea so far. My eyes are starting to get a bit gritty and I’ve got some eye drops to help with this. But so far so good!! I’ve even managed to get out for a 2/3 mile dog walk most days which helps keep me sane too!!

Fingers crossed the treatment remains kind to me. One more dose tomorrow morning and then I’m done! Then its the waiting game again to see what other side effects will creep up on me and trips to Kings for clinic and DLI!

Waiting for the call….

Firstly I want to start by saying thank you to all those that responded openly and privately to my previous post. I apologise if I have not responded to your message, but I promise that I have read them all and am grateful for you sharing your experiences and suggestions.

With all your support I have made some steps to actively helping myself. I have been into the Robert Horrel centre (Peterboroughs Macmillan centre) and signed up to use their free therapy service, the first available appointment was first week in February. I have to say I’m a bit pessimistic about this. I tried going to some drop in sessions at the centre before and found it didn’t really suit me. The centre is on the hospital grounds and the specialist nurses have offices in the centre so they are in and out. So for me it feels almost too clinical and I have an urge to avoid going to the hospital on days I don’t need to be there for treatment.

I have made a self referral to IAPT http://www.cpft.nhs.uk/services/pws/psychological-wellbeing-service.htm . This is the local counselling service, I’m still waiting to hear back from them and imagine there will be quite a waiting period!

I have reacquainted myself with tools that I used to use but have been neglecting. (Isn’t it funny that when you are in panic mode you tend to forget about the things that can help) Little things like using the headspace app and some relaxation audios I have downloaded. They aren’t directly helping me sleep, but they are helping me to lay still for the half an hour I’m listening to them which is at least some rest!!

I have made the decision to tell myself its ok to need medication to help. I have decided to temporarily increase my citalopram (antidepressants) to 30mg (instead of 40mg) and see how I go. With the knowledge that this can be tapered back down again when I feel ready too. I need to learn to be kind to myself, and if taking a pill (with no known long term side effects as far as I can find) will help me get through all this shit I’m having to deal with then it’s got to be worth a go.

So adding to the shit…. my update for the week…. On Thursday Kings FINALLY emailed Peterborough with the proposed plan for chemotherapy. On Friday whilst out for lunch with my mum I received a voice mail from Peterborough asking if I could go to the ward that afternoon as they had a bed for me. WTF?!?! At this point I didn’t even know they knew the plan. I didn’t even know the details what chemo regime I was having. Didn’t know if I needed to be an inpatient/outpatient. How many days I would be in? Likely side effects of any of the drugs? etc etc…. So I was a little bit taken a back!!

After many phone calls trying to get hold of the right person I managed to get the details! I’m going to be on a drug called Cytarabine. I believe on the medium intensity of it. I’m due to have 3 days of chemo on alternate days, i.e. Monday, wednesday and friday. If all goes to plan with no complications (i.e. infections) then I should hopefully be allowed to go home the day after my chemo. On the chemo days I will be having chemo twice a day and I will be hooked up to the pump for 4 hours at a time!! (Have already being trying to work out when I’m going to shower!! ha ha!!) On the alternate days if I feel well enough I will be able to go home for a bit on day release.

I declined the bed on Friday as I just couldn’t get my head round it. I need just a little bit of time to prepare myself mentally! Get my hospital bags packed up and organise stuff at home. So I’m now on the list for potential admission on Monday, depending on the bed situation. Just a case of sitting and waiting for the call!!

Now I’m still trying to get my head round the urgency of the admission. I’m not sure if I have caused it myself through chasing the communication between the hospitals – although I felt I was clear that I just wanted to know the plan, I didn’t feel a need to start chemo straight away, I just wanted to know what I was having, how long the treatment was for, and an idea of when!! So I’m hoping the urgency hasn’t been driven by me, as to be honest I would rather wait a week as I have plans!! But then again, if we wait a week then its likely my other plans later on in the month will get screwed up, so in the grand scheme of things it probably doesn’t really matter!!

But all in all I feel better for knowing that things are moving along. Now just the waiting game for a bed to become free and deciding on when to make the call to cancel plans!!

Do the happy pills work??

Bit of a long one!!

So today I’m being brave and want to write about some stuff I don’t talk about very often. I’m fairly open about it if it comes up, but its not really a topic that flows naturally into conversation. I suffer with anxiety and stress…. this comes and goes depending on whats going on in my life, but I have always been a bit of an over thinker and like to be in control of situations.

After my first transplant in 2011 I started having mild panic attacks. These were mostly based on and around my fear (pretty much phobia) of vommitting. My meds made me feel nauseous and this teamed up with (Self inflicted) stress at work I could get into a right state at some point most days. My brain would work over drive to the point of either making myself sick, or that I had to just escape whatever situation I was in.

In 2013 when my cancer came back and I had a hideous 6 weeks in hospital I ended up in a state of depression. I could not drag myself out of it and that teamed with anxiety attacks led me to being put on antidepessants, citalopram. I started on 10mg and then was increased to 20mg. Initially when put on the drugs I just felt numb. Like I no longer felt depressed, but equally i didn’t feel happy. I also lost my concentration span. It took a week or two and then it settled down and I gradually started to feel more normal.

I have been on the citalopram ever since 2013. I have discussed coming off it with doctors, and then something always seems to happen which makes them suggest it would be better to wait. Its quite a long process to come off it as you have to wean yourself off. I guess your serotonin levels just drop and things can get bad!! (I did cold turkey once, unsupervised, for a few days and felt pretty hideous by the third day – not a good idea!!)

The last few weeks I have been struggling again. I have been struggling with sleep, not getting to sleep till late and waking up early which is making me feel pretty drained. My body is still healing from previous chemo, infections and the flu. I still need a lot of rest. So I have been taking the odd zopiclone (sleeping tablet) to help me get my needed rest. Now they do help to an extent, but the rest I get off these isn’t the same as normal rest. Also I still don’t manage to get enough sleep before my brain decides its awake and ready to stress about what the day has to bring!

I describe my anxiety in me as a real jitteryness. Like I can’t just sit on the sofa, get comfy and relax, i’m constantly fidgeting. Or wanting to do something. I feel like I’m on edge. I also have a bit of a nervous twitch where I’m picking my lips and my scalp actually making myself bleed! Sort of form of self mutilation. (Doesn’t look too bad in the picture, but you get the idea!!)

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My main current stress at the moment is getting things organised. My consultant at Kings still hasn’t spoken to my consultant at Peterborough to tell the plan for chemo. So nothing has yet been booked in. I know its not a huge rush, I’m not desperate to start next week ,  BUT it would be nice to have a date. It would be nice to know if I will starting tomorrow or in a months time! Although a lot of things can’t be planned for in the long term, the short term should be feasible if only two hospitals would communicate with each other!! Then I get it in my head I need to do it for them. So I have been emailing the two hospitals trying to organise the communication….. I’m not sure its actually making that much difference, I think its just stressing me out instead!!

I tend to get into this kind of nesting mode prior to chemo/treatment. Where I feel like I want to try and organise everything ready. Thinking about what I’m going to take into hospital if I’m an inpatient. Trying to get any jobs done that I won’t be able to do once I’m feeling rough again. A strange example but on Saturday I dragged my mum to ikea so I could return a few items I’d bought in summer last year before it got too late to return them. All these strange things come into my head that I’ve been meaning to do and gain some form of urgency. I end up writing lists and having more things than I can do.

I also struggle a bit with my emotions. I’m not a cryer, and I’m generally a very rational person. I deal with shit things by planning and trying to find an element of control. Work out what the rational things are I can do to make the situation better. The last couple of days I have had a few tears, and if I’m totally honest I’m not sure what about. I know it surely would be obvious that its about my treatment, but I’m not sure it is really. Its just a general anger and frustration. And its the little things that seem to tip me over the edge. I have this huge urge to go out running and to keep running and running and running until I can’t physically run anymore. Just to get rid off all the pent up anger. (probably not a very constructive way of dealing with it when I’m already dealing with fatigue and getting frustrated with that….)

So I decided I wanted to speak to the GP to see if he could recommend anything to help. Now I know there are lots of ways to deal with anxiety/stress – meditation, relaxation, breathing exercises, yoga, physical activity and believe me I’ve tried these but I just can’t break the cycle. Just preparing to speak to the GP felt stressful in itself. Ringing up at crack of dawn to get on the telephone appointment list. Having to sit by your phone waiting for the phone call. And then planning on how to explain whats going on in your head. (Always seems easier to talk about physical symptoms eh??)

I suggested to the doctor that I would like a short supply of diazepan ( a slight sedative) to get me through this time where I’m feeling so anxious and to hopefully relax me a bit. To which he responded that he didn’t agree this would be a good idea as they are too addictive…. I explained that I don’t really have an addictive personality in that sense. I’m very good at rationing my zopiclone, as part of the anxiety in sleeping is reduced purely by knowing I have some in the house.

He suggested instead I take some antidepressants. To which I had to explain I actually was already on some if he would care to check my repeat prescriptions….. (always nice to know they have even looked at your notes before seeing you…… he also asked me what i was being treated for at the hospital…. but i have to say i’ve given up on GP’s actually checking any of your history before seeing you!! That’s a different frustration!!) When he saw I was on citalopram 20mgs he prescribed for me to go up to 40mg.

Now I can’t decide how I feel about this. The diazepan felt like something to help me as a short term solution, but i know I won’t be able to get much of a supply of this judging by his reaction. Also he has given me such a piddly dose it doesn’t have any effect on me (Remember I’m a sedative fighter!!) The citalopram feels like something I will be committing to long term. So I almost need to make a decision if I think i’m going to feel like this a while, or if its just a short term blip. If I think it would be worth increasing my citalopram in the long term. If the initial side effects from increasing it will be worth it……… To what potential damage am I doing to myself taking these drugs? Will I ever be able to function without them? In the grand scheme of things does it matter if I can’t?!?! Should I actually be trying to accept and come to terms with all my emotions rather than trying to bottle them up with the aid of a pill??

All I know is that I just want to be able to chill out for a few hours a day. To be able to sleep at night. To allow my mind and body to rest.

Would appreciate any thoughts/comments on this…… please feel free to pm me if you don’t want to respond openly. xx

P.S. I have tried cbd + oil and have found it makes me feel really odd. I get the feeling the whole room is spinning and feel really nauseous. Given my issue with vomitting I’m not sure this is for me!

 

Prevention is better than cure!

Well today was an eventful day!! I went to Kings to get the results of my chimerism (% donor) blood test and find out our next steps. And it was a bit of a mixed bag!

My normal blood results were still down after the flu (platelets 66, neuts 1.08). My chimerism however was quite interesting. Now this part gets a bit complicated, even I don’t understand the full ins and outs of it but….. My CD3 level has changed from 62% to 80% donor 2, which is fantastic. However, my CD15 level has changed from 98% to 90% donor 2. According to Austin (my consultant) this is a bit of a red flag. Its only a minor drop, but its not something we like to see.

The plan now is to be proactive. We know things are a bit askew, so rather than just giving more DLI (donor lymphocyte infusion – top up cells from my donor) we are going to partner it up with some more chemotherapy. The chemo shouldn’t be as hardcore as the last lot I had and there is a chance I might be able to have it as an outpatient (Austin says I can, but as its Peterborough who will be administering the chemo they will make the call on what protocol we follow). I’m crossing fingers and hoping for outpatient as it makes the process so much easier mentally, but if I have to go in then I have to go in. Generally I’m feeling pretty positive just to have a plan in place, so I will roll with it.

I then had the treat of an unexpected  bone marrow biopsy. I argued against it, but they want to be able to see the starting point of the bone marrow before administering the chemotherapy. I feel sorry for the poor registrar who agreed to do it. Austin did warn her I was “a bit tricky” but I don’t think she knew what she was in for. A “20 minute procedure” took over an hour and I genuinely lost count of how many needles we used to attempt to get some marrow out. I just have so much scar tissue now – I’ve been having this biopsies since I was 17 (I’m now 31).  Luckily she managed the pain very well and i didn’t suffer much at all beyond the initial local anesthetic. 🙂

To top the day off I got home and realised my bone marrow site had bled through the packed dressing, two tops and my coat! After a call to the hospital I have been lying on my back watching TV for an hour to apply pressure and it seems to of slowed down, so hopefully I’ve avoided a trip to A&E for platelets!!

So now I just have to wait for my two hospitals to talk to each other and get me booked in for chemo…. anyone want to place bets on how long that will take?!?! I don’t feel in a huge rush this time – but would hope to start before the end of the month. Lets see what happens!

Filling in the gaps and trying to live for the moment!

So yet again its been a while between blogs – I apologise! This is mostly because I didn’t really know what to write as I didn’t have answers to all my questions! Firstly here are the photos of the lymphocyte cells I received coming out of the liquid nitrogen. I still think this is pretty cool even after seeing it a few times!! Makes the process all seem a bit futuristic!!

As far as the day, it all went more or less as expected. I felt a little drowzy from the piraton, but no initial ill effects from the donor cells other than (more!) fatigue for the next few days. With time I have noticed a little more skin GVHD and my platelet/white blood cell count dropped slightly – all to be expected really. The GVHD in the simplest of terminology is my body responding to the donor cells. In me this tends to manifest itself as a type of ezcema, unfortunately none of it shows up very well in photos, but I’ve got very dry patches of skin with lumps and bumps on my torso/back and my scalp is literally falling apart! All very itchy and attractive!

Whether this dose of donor cells has had a good impact or not I am yet to find out!! I was due to go to kings a few weeks ago but I got struck down by influenza so wasn’t up to the journey. And I have to say a simple virus has never made me feel so rotten and for so long. It started with a slight itchy throat on the 27th December, and then very quickly progressed the next day into fevers and weakness. Other than hospital appointments I didn’t really leave my bed or the sofa for that week! Its only the last few days (today being 12th Jan!!) that I’ve got back to walking the dog and started to get my concentration span back!! Don’t think I will be hitting the gym hard for a few weeks yet, really took it out of me! And as virus’s can, it knocked all my blood counts back – my platelets had been round 140 but they dropped down to 40 and I became slightly neutropenic again. Luckily my blood counts are slowly starting to show signs of recovery, which is fab news (platelets up to 60, neuts 1.4).

Now to find out if the DLI  treatment worked Kings wanted me to take some blood samples to test my chimerism (my % donor cells), in the hope that this would have improved. In order to reduce the delay in getting these results Kings suggested we could courier some blood samples over (My local hospital doesn’t have the ability to do this test). Unfortunately PCH doesn’t have a courier link to Kings so instead I get to go post my blood samples myself – interesting being asked the value of my parcel!! Priceless?!?!?!

So Kings have now got the results of the chimerism and I have been given an appointment to attend clinic next wednesday to determine the next steps. If the chimerism has improved and my blood counts have remained stable we will likely continue with more DLI as opposed to chemo (Yay!!). So I’m hoping by next week my blood counts have recovered from the flu so we can get a full picture and make a decision.

However – things won’t stop here because the answers to the majority of my questions about long term planning is “We don’t know”. The doctors don’t have a clue what protocol to set up for me. The current plan at the moment is “Give DLI and reassess in 4-6 weeks”….. That determines chemo or just DLI…. then we will do chemo or DLI then wait 4 -6 weeks to determine the next step….. Its all a bit of a guessing game! So I’m never going to get a “long term treatment plan”, we are constantly going to be making it up as we go along. Using each set of test results to determine what happens next. Also as proven by my attack of the flu, any virus I get is still going to hit me harder than everyone else and take me longer to recover and no doctor can predict what viruses/infections I might pick up in the coming months.

So with this in mind…..my challenge to myself for 2019 is to try and live in the moment. If I’m having a good day try to take advantage of it. If there is a trip/dayout I want to do then book it – I will make it to some and others will get cancelled, but if I don’t book anything then I won’t do anything!! Basically I can’t sit around waiting to be told that everything will be ok for the next “x” months because no one will ever be able to say. Looking forward to trying to make some plans for the year!

 

 

 

Bittersweet birthday celebrations

On the 7th January 2016  I received my second life saving anonymous donation of stem cells from my German donor. So last Monday was my “3rd birthday”.

In the end the day passed without me doing much to recognise the significance of the day, mostly because I didn’t know how I felt about it. I didn’t feel like celebrating the 3 year milestone, as it doesn’t feel as significant when your cancer has relapsed.

Instead I have just decided to use it as an opportunity to reflect on how grateful I am for this complete stranger who generously went through a procedure in order to save my life. To say a huge thank you to her and anyone else that has donated stem cells.

To say a huge thank you to anyone that has signed up to the register to donate stem cells and is still waiting for their chance to become a hero.

To say a huge thank you to anybody reading this who subsequently decides to join the bone marrow register.

Thank you to you all – without your generosity I likely wouldn’t have made it past 2011.

Everyday 3 people receive life saving stem cells from anonymous donors.

Every day, at least 5 people start their search for a matching unrelated stem cell donor – some of whom will never find their match.

So how about setting a 2019 goal – Join the bone marrow register – If you are already on the bone marrow register then tell a friend to join the register. It takes 5 minutes to sign up online and then 5 minutes to spit in a sample cup and send it back. 5 minutes to potential be someone elses hero!!

There are three different ways to join the register:

https://www.anthonynolan.org/8-ways-you-could-save-life/donate-your-stem-cells

https://www.dkms.org.uk/en/register-now  (will take sign ups over 35)

https://www.nhsbt.nhs.uk/british-bone-marrow-registry/how-can-i-help/

 

P.S. There is loads of information on these websites about what it involves to be a donor – equally I’m happy to try and answer any questions you have!

 

 

 

 

 

 

Prepping for the big hospital trips

Tomorrow I’m going for a long day at Kings hospital for some treatment and a consultation….

First I will go to the unit and they will do a blood test. My bloods will be sent to the lab to be tested and the results will be back within 1-2 hours. Then if all is well I will sign the consent forms to receive DLI – donor lymphocyte cells, essentially a top up from my most recent stem cell donor. The aim is to take advantage of the good state my bone marrow is currently in and bump up the proportion of donor 2 cells. These donor cells should help to push out any residual cells from donor 1 and me.

To receive the DLI I have to have some pre-meds first; usually piraton and hydrocortosone. This is to stop me having an immediate allergic reaction to the new cells. The piraton usually makes me a bit sleepy/woozy for five minutes or so. (Some people stay sleepy for longer than that, but I’m a sedative fighter!)

The DLI is brought up from the lab in a liquid nitrogen container. (Will add a photo tomorrow!!) So when it opens it looks really cool as you get all the smoke coming out! They defrost it and then it is injected into my veins like a normal drip. I have to sit around and wait for 2 hours to check I don’t have any reactions. Then I’m free to go home.

Last time I was I went to have this I was in the hospital from 10 – 6pm! So my main preparations for the day is taking things to do and eat and drink!! Sometimes the hospital will provide you with a sandwich, but the hospital sandwiches aren’t the best so prefer my own!! Also I find the phone signal at kings is pretty pants so can’t even waste time staring into space on facebook!

I will hopefully get to see my consultant at some point during the day. We will run through my full bone marrow results and try and agree on a plan going forward. I find preparing for a consultation one of the hardest things to do. I usually spend either the night before, or my journey to the hospital preparing a list of questions that I want to get the answer to when I speak to the consultant. For example at the moment my main questions are:

  • What % blast cells do I have now compared to before the chemotherapy?
  • Can we really consider this to be remission when I have been here before? (I was classed as in remission after one round of DA chemo in 2015. I then had intensive pre conditioning and my transplant after and i still relapsed 2 years later)
  • How are we planning to maintain a state of remission?
  • If I have maintenance chemotherapy what will this look like? Are we confident this will be enough to keep it at bay?
  • Have we got any news on joining the trials for the immune therapies?
  • Am I going to be able to return to work, etc? (I’ve got a mortgage to take care of now too!!) – I know work shouldn’t matter, but it does to me! I don’t feel ready to give up on a career in analytics. I want to progress. I also don’t want to give up my teaching; I love love love teaching yoga and group exercise. But I can’t commit to any of this in my current state and with all these unknowns.
  • Can I actually plan any form of life? (I am very much living life on a week by week basis at the moment. Too scared to book significant things far in advance in case they have to be cancelled as its always such a let down)
  • etc etc

But when you have these consultations something always takes you a bit by surprise….. Or the answers to the questions are all far to wishy washy for my liking. I would love to walk away with a solid plan, even just to know that I can book some holidays, or if I will be well enough to work during treatment. How long will we continue treatment for? Or even just an idea of “You will relapse again in x months time, so enjoy the next x months before we start intensive treatment again” But these are all questions that no one knows the answer to. No one has a bloody clue what they are going to do with me short term, let alone in 6 months time. I am one of a very small number of patients in this situation, and I should count myself lucky to feel as well as I do!

I also find despite my best attempt to ask all the questions I have brewing, as soon as my consultant walks away a load more start bubbling up. Its like you need the time to digest the information before you then start thinking of the questions. And this is when my clinical nurse specialists regret ever giving me their email address as they get bombarded!! ha ha!!

So how do you (or would you) prepare for these meeetings and long days in hospitals? How would you cope with living in the limbo I’m currently in?? The unknown! Answers on a postcard please!!

 

 

 

 

Finding my feet again

So its been a few weeks since the last update, which is usually a good sign with me as it means I’m too distracted by life to blog and I’m not sat around totally bored and dwelling on stuff.

My bloods have improved massively over the last two weeks, which is a fantastic sign. At my last check up on Monday they were:

Platelets 136 (almost normal)

Haemoglobin 100 (holding its own and increasing!)

Neutrophils 1.32 (Above the magic number 1! I’m no longer “neutropenic”. I’m still high risk to infection, but in a much better position to fight off any nasty bugs, which is great news as there seems to be loads kicking around)

Biopsy results – were a little inconclusive. Kings are fairly sure I’m showing the signs of being in remission. My bloods are great, and the samples they could test looked promising. HOWEVER, I’ve been asked to go back for another biopsy as the sample from the last one isn’t fantastic. Pretty frustrating – I’m not too bothered about being stabbed again, its not the kindest of procedures but I want the answers. The frustrating part is the added waiting time!! Its now 8 weeks post the start of the DA chemo and if I was to continue with the regime I should have started it at least 2 weeks ago! Instead now I have to wait another week for the test, and a further 2 weeks for the results! And hope that this sample is better………

Ignoring all of the thaffy medical stuff I’m feeling much more energetic in myself. The chemo has started to leave my system, I’m recovering from the multiple infections and my physical symptoms are getting less and less. And now that I have a bit of an immune system I can get out of the house and go explore the big wide world! (within reason of course)

So now is the time for me to focus on building up my mental health and physical strength. So you will see me out walking the dog. You will see me at the gym doing silly dance classes to make my brain work and maybe the odd bit of gym work to strengthen up. You will see me in yoga trying to get my brain to find some chill time. You will see me out with friends. You will basically be seeing me trying to find a sense of normality again in my life. An element of routine and structure to give me a bit of ompf to get up in the morning.

What you won’t see, are the afternoon naps and the days/evenings zonked out on the sofa. But I have to make the most of the times I feel good and do something for me. Its at times like this that I start to worry i’m being judged. That I “don’t look ill” enough to be off work. And if people see me a the gym they will accuse me of skiving work. I know this is really stupid….. I know I have every reason to be off work, more reason than most, but for some reason I still feel guilty whenever I see a work colleague and I’m out and about “looking well”. Ha ha! I hope that people aren’t judging me. And i hope that they understand that this is me trying to heal, trying to get stronger so when my treatment calms down I will be in a position to return to work.

I can see the light!!

Around two weeks ago I was readmitted to hotel PCH with ANOTHER infection. In fact two infections! (And this was despite visiting the hospital as an outpatient every day for a once daily IV antibiotic.) One infection was and abscess on my tooth, and the other more strangely was an internal abscess/bleed in my forearm. As the swelling started to increase on both, we opted to admit me for stronger IV meds, rather than wait for me to get unwell.

This turned out to be a good decision, as my tooth continued to get worse over the next few days rather than better. The pain was horrid, and the swelling took over the whole right hand side of my face up to my eye. (Which is when I started to panic…. I’ve watched too many episodes of Grey’s Anatomy where simple things like tooth infections spread to eyes, brains, hearts!! ha ha!!)

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As the week went on, the infection took ages to clear up. I had to switch antibiotics twice but by Friday things looked considerably better, both the swelling and pain had reduced. During this week I was starting to lose my sense of humour and getting more grumpy and fed up. Over the last few months I’ve watched my blood counts drop. I’ve become totally dependent on blood transfusions. I’ve been stuck in hospital pretty much since the end of August. And to top things off…… My blood counts should have been recovering by now after the chemotherapy, so everything was getting a little bit scary. To top things off I was hoping to be discharged on the Friday, but the haemotologist consultants had already decided this wasn’t going to happen so after 6 nights on the ward I had to spend another 3! Errgghhh!

Since getting home on Monday I’ve felt my mood improving as I’ve got settled at home. I’m still visiting hospital every day for my IV antibiotics, which saps the majority of my energy, although I’m trying to find some extra to get out and enjoy the sunshine with my spaniel Jasper. Its been such gorgeous weather I can’t stay in side. Been taking my hat off and soaking up the sun and vit D through me bald head!! ha ha

Now I don’t want to jinx this too early on but………. It looks like my blood counts are slowly slowly recovering from the chemo. I don’t want to get too excited about it just yet, but my blood counts are slowly creeping up and I’ve lasted a whole week without a platelet transfusion! Fingers crossed the numbers continue to climb – but whatever it’s given me hope and I am starting to see the light at the end of the tunnel!!

Finally….. today marks World MDS Day. So a shout out to the charity that has helped me and many others fighting this disease: https://mdspatientsupport.org.uk/

 

 

The hair……

The thing everyone seems to think I should dread the most…..

The first thing people ask me when I mention the word chemo – “oh no – will you lose your hair?”

The first thing people seem to associate with chemotherapy treatment.

But is it really such a big deal?!?!

I’ve been listening to the bbc podcast ‘ You, me and the big C’ and it’s mostly been fantastic. They discuss what it’s really like living with cancer and some of their top tips for getting through it all. It’s great to hear such an open and honest account of such a life changing disease. My only bug bear with the podcast is the amount of time they were chatting about hair loss and how big a deal it was for them. How they suffered through the horrid cold cap to reduce their chances of losing their hsir. How they cried ehen it started to thin or fall out. It all got me thinking…… Should I have been more bothered about mine?!

For me the hair loss has never felt like an issue. It’s something that I felt I could do something about. When I found out in was going to lose my hair I went shopping for hats, I got my nhs wig shaped by my hair dresser, I looked into all options to make me feel better. I knew it was only going to be temporary and felt it was a very small price to pay for a treatment that would save my life.

I was more worried about the side effects I couldn’t control; the sickness, diarrhoea, the fatigue. More worried about the risks of the treatment. More worried about the treatment not working. More worried about how much my life was going to change…… NOT worried about ‘losing my identity’ through losing my hair. I would hope there is a lot more to me and my personality than what sits on top of my head!!!

So I’ve always made sure I’m in control of it. I’ve shaved it off when it’s started to fall out rather than letting it go lank and wispy. And I’ve kept it short until it’s got back to its thickness when growing it out. I wear a selection of fun hats and wigs, or styling out the bald look. Whatever I fancy that day, and however cold my head is!! (Generally I don’t do wigs much as I feel a bit awkward in them. Feel like I’m always adjusting them)

So what do you think? How much would your hair matter to you?

 

Update on me

The only word I have to say is… Tired. I’m so so so tired. Just the daily trip to hospital for my iv antibiotics is wiping me out. Been sleeping 12 hours and enjoying my own bed, and still barely staying awake during the day. Writing this blog has taken three days worth of concentration!! Been needing a lot of blood products and think the chemo and infections have all caught up with me. So I’m trying to listen to my body and take things slow. Things will get better, just need a bit of time!