Failed at the first hurdle…

So phase one was attempted today, and it turned out to be a massively challenging day both physically and mentally.

Firstly I had to get a horribly early (and expensive) train to get to kings for 10ish! (Wasn’t that early, but a lot earlier than what i normally get up! ) I got there and saw the doctor heading up the research trial. We had a discussion about the trial and he explained how it was a 50:50 odds on whether I got the vaccine + DLI or just the DLI. I signed all the consent forms and then I was sent of to do all the blood tests and bone marrow harvest.

Janet got the first few attempts of the harvest… 3 holes made in my left hip – No bone marrow aspirate would come out. Then she tried my right hip, 2 holes made and still no aspirate.

Then Guy came to have a go again in my left hip. By now I’ve actually technically had the max dose of local for my weight, but they kindly agreed to give me some more! Luckily this time we managed to get almost 5mls of aspirate, but this was no where near our target. So Guy had another go, this time in the front of my left hip – No luck there.

Finally Janet persuaded one of the consultants to have a final go in my sternum (breast bone). This attempt was hilarious, the consultant was from the Netherlands and all the equipment here is completely different to what she was used to. Can’t really explain it, but she made both me and Janet laugh! Sadly though again all we could get out was a dribble. At this point we decided enough was enough.

So after 5 holes in my bones, and quite a lot of pain we ended up with 5mls of aspirate…… We were aiming to get 50mls as my blast level is low and we wanted to get as many blast cells as possible. The samples have still been sent to the lab to be tested, but we probably haven’t collected enough blast cells to be able to make the vaccine. And I’m completely gutted. I was so excited about this trial. I was keen to try something new. We know now that chemo will only get my into temporary remission, this was a chance to try something new and hopefully get some positive long term results.

One good thing to come of today is that I got my PICC line inserted. After the trauma of the morning this was totally painless and a very chilled out procedure. Once the local aesthetic was given I almost fell asleep!! So at least I’m now all ready for my chemo on Monday.

Now to prep for chemo next week, and of course to try and make the most of my last few days at home!! Any suggestions of things to do welcome!

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Putting my big girl pants on….

Both figuratively and literally!

So I have a sort of plan…….. The main plan, which I can quote my specialist nurse for, is to keep me alive until they have some better drugs!! One in particular being immune therapy type drugs, like the CAR-T that has been in the news. (This is only currently for use in lymphoma and kiddies) https://www.theguardian.com/society/2018/sep/05/nhs-treat-young-cancer-patients-expensive-game-changer-drug-kymriah

Stage One

Tomorrow I’m doing a trip to kings hospital to have my bone marrow harvested and to sign up for a trial. This trial will be to harvest my cancer cells (blasts) from my bone marrow to be stored ready to use at a later date. To collect the cells they are going to do a bone marrow biopsy, however a unlike a normal biopsy they are going to try and collect 50mls of aspirate, rather than the normal 2-4mls….all with just local anesthetic….. OUCH!!

I’m also having a PICC line inserted to set me up ready for treatment, but that shouldn’t be too bad a procedure!

Stage Two

If a bed is available I’m being admitted to PCH on monday for DA chemotherapy. From memory this chemo wasn’t too horrific, but I will be an inpatient for 10 days for the chemo, longer if I get any infections.

I will continue doing “rounds” of chemo until we get my bone marrow into a state of remission

Stage Three

Once my bone marrow is in a state of remission Kings will be able to put me on the trial.

This trial will use my harvested blast cells to produce a vaccine. This vaccine will then be given to me to help my immune system recognise and destroy any remaining blast cells, and any that might be produced. This is a totally new thing, but certainly got to be worth a try!!

Stage Four

Recover…. get stronger…. and get ready for all the new treatments when they are available!!

Flaws..

There are a few potential flaws and risks to the plan….. The first being that we’ve got to get enough blast cells to make the vaccine. I’m notoriously bad at given up bone marrow aspirate, so I’m keeping my fingers crossed my bone marrow is feeling generous tomorrow!! Even if I give up 50mls of aspirate it then needs to contain enough blast cells.

And the final challenge will be getting me into remission without losing my existing transplant! If this happens, I’m a bit fucked, and I might be asking all you lot to help pay for a third transplant!! Ha ha!!

 

 

 

Is there anything I can do to help?!?

The common phrase that gets thrown around when talking to someone who is unwell of in hospital…..

For me one of the best things you can do is regularly donate blood. This could help me by supplying me with blood/platelets. It could help others with similar haetmotology conditions or cancers. It could help anyone who has been in a serious accident or having major surgery.

Did you know that only 4% of the UK donates blood?? Now I would hope that % is higher among my friends. The majority of you are aware of how many hundreds of blood transfusions I’ve had in my time and how I would be dead without them.

I hope the % is higher among my friends, but I have a feeling it probably isn’t. I know some of you have valid reasons for not donating or you unfortunately tick one of many boxes on the NHS ticklist. But some of you are maybe just a bit scared of needles or the idea??

At 17 I considered myself needle phobic. I had teachers and friends practically force me to go have a blood test done to find out I had blood cancer. Its amazing how quickly you get over your fear when you are having blood tests every other day, canulars inserted and bone marrow biopsies done. You know its life or death, so you just get on with it.

I know areas of the country where blood is scarce and friends have had to wait days before getting the blood transfusion they needed to feel human again. I know that without that 4% of the UK who donate blood I would have been dead over 14 years ago.

This is me today with my bag of blood. Smiling because I know in a few hours time my head will stop thumping, I will be able to stand up without feeling like I’m going to faint and I will be able to walk up the stairs in my house without having to pause as I can’t catch my breath and I will feel a damn bit perkier too!! (Also without this blood my haemoglobin levels would continue to drop, and i would eventually die!)

So I want to say thank you to the two people who made a massive difference to my life today and have allowed me to go on fighting 🙂

And if you ever want to do something to help me out, then please give blood, you don’t know whose life it might end up saving!

 

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I hate to say I told you so…..

And I really do hate it this time, because despite being right I’m the one that ends up losing!

So on Friday I received a phone call from King’s with (almost) the full results of my recent bone marrow biopsy. Unfortunately despite the 3 rounds of chemo I have had, the results show that the level of cancerous blasts in my bone marrow is the same if not slightly increased. They are still trying to do some cytogenetic testing, but apparently the sample taken wasn’t the best and they are struggling to get the results.

So what does this mean? I’m not entirely sure yet. The doctors are still discussing me. They are suggesting moving on to more intensive chemo but haven’t decided what yet. It is a bit of a balancing act trying to kill the disease, without losing the transplant. They have been discussing going for a third transplant. They have been discussing some clinical trials, but unfortunately I don’t tick the criteria boxes for those having already had a transplant. The have been discussing some weird and wacky options where they harvest my blast cells and essentially make a vaccine! So treatment protocol wise I’m in a bit of a state of limbo until they decide what is best to do!

But in a nutshell….. I was right…I wasn’t convinced the aza was going to work. One good thing is it has probably stopped the disease spiraling out of control, however it hasn’t got rid of it. But I really didn’t want to be right!! I really had hoped the doctors would prove me wrong!

In the meantime I’m currently sat in a hospital bed, hooked up to fluids and IV antibiotics and fluids. The back end of last week I started to show signs of the common cold. Sore throat, runny nose, bit of a cough and fatigue. By the end of the weekend I was running a fever and had to be admitted to A&E. Its “only a virus” but my body is trying to fight this virus with 0.2 WBC and 0.1 neutrophils! So I will likely be here for a few days being kept a close eye on!

To end on a more humorous note….. I just found one of those ecg stickers under my boob when I just had a shower. This was despite having a conversation with the HCA about finding these days after and us both being careful to try and remove them all!! ha ha!

Babies everywhere……

So yesterday I got a letter through the post telling me that I need to make a decision on the eggs I’ve got in storage. They have been in storage for 6 years free of charge, and now I need to decide if :

  1. I want to pay £350 a year for them to continue to be stored
  2. I want to donate them to research
  3. I want them to be destroyed

Infertility is not something commonly associated with cancer treatment, but it is one of the unfortunate side effects of chemotherapy. Chemotherapy destroys fast dividing cells, so the ovaries are usually effected.

Children have never been one of my big goals in life, but before undergoing my first stem cell transplant I opted to have some eggs harvested and frozen to give me the option later in life. Just in case.

For me, I don’t think I would ever plan to have children, I think they would have to be a happy accident. So the process of going through IVF in order to have children does not feel like something I would opt to put myself through. Also – with the rate things are going would I ever actually be well enough to have a baby!!

Anyway…… I have decided to donate my eggs to research now. My opinion hasn’t vastly changed in 6 years, and I doubt it will change in another 10. I will just be a fabulous Auntie Em to my friends kids and gladly hand them back at the end of the day!!

This feels like a bit of a weird blog post…. but I just wanted to make people aware that there is more to cancer treatment than just feeling sick and losing your hair!!

Time for compromise?

I’m sorry but tonight I feel like I want to have a bit of a rant and a whinge. I’m tired, I’m angry and generally fed up! I’m angry how this disease is taking over my body again. I’m angry that it means I’m having to make compromises I don’t want to make.

My blood results are getting steadily worse. For those who understand the numbers: hb 93, platelets 22, neuts 0.7. So my red blood cells are getting to the point I will shortly become dependent on blood transfusions. The reasons for the counts dropping are not certain. The chemotherapy will definitely be making my counts drop, but also it is likely the disease will be effecting them too. I’m having a bone marrow biopsy on Monday which will help to establish if the current treatment is doing its job.

In the meantime my physical symptoms are getting worse. I’m getting tired…. the real word is fatigue….But it still doesn’t explain it properly. Just a real heaviness in my body and also a kind of brain fog, like its difficult to focus and concentrate on things properly. I’m getting daily headaches. I’m getting out of breath doing stupid things like going up the stairs (weirdly I’m still fine if its steady cardio, but if I suddenly do something my body doesn’t seem to be expecting then I struggle). I’m getting dizzy as my blood pressure is low. My digestive system is all messed up, blah blah blah

I’ve got to the point where I need to recognise I need to stop doing everything I’m doing, but I don’t want to! I work 4 days a week at “the day job”, but my real passion lies in the fitness industry where i teach a couple of fitness classes a week. On top of this i’m juggling hospital, visiting family, trips out with friends, etc, etc. And its all getting too much but how do you choose what to give up?

I want to be able to put my effort into work, so i can show my new employer that I am a good worker and go up the career ladder. (More importantly I need my job to pay for my mortgage!) I want to keep my passion for fitness going and strive to get stronger and fitter. I want to be able to go to social events, be able to enjoy them and be the social butterfly i used to be! And I want to do all of this…. like most other “normal” people. It seems most people take for granted the fact they are able to do a full days work, and then still feel energetic enough to go out to the pub/cinema, etc that evening.

And I know “But you (I’m) are doing so well for someone with cancer”…. Do you know how many people have told me something similar to this over the last few months. Like I should be grateful that I don’t have to give everything up, that I only have to make a few compromises and listen to my body. Well I don’t bloody want to listen to my body. I want to keep doing all of the things that I enjoy. I don’t want to bloody compromise…….

Rant over….

P.S. I know people mean well. And I know there is no right thing to say in these situations. And I’m not angry at the people that say these things, cos what else do you say? I’m just angry about the situation!!

Trusting the experts

Today I went to Kings for a clinic appointment, blood tests and chat with my consultants. It was a day of lots of waiting – I had 80 people in the queue in front of me for blood tests! And after arriving at 11am, I didn’t get to leave the hospital till gone 4pm. However, it felt like a very worthwhile appointment as I got lots of my questions answered.

I actually ended up having a consultation with two of the senior consultants (Austin and Victoria) and two specialist nurses! I got the full results of my bone marrow biopsy. With the highlights being that I have c.6% blast cells, so still quite a low level. But all of these cells contain the defect monsomy 7, which is a high risk genetic marker.
I expressed all my concerns about the current treatment plan of azacitadine not being strong enough or worthwhile pursuing as we have done it before and it just doesn’t seem like an appropriate drug for someone my age.
They explained why they were taking that action and the overall plan. The basic plan is to get me up to 100% donor. So they believe that should be achievable through the azacitadine and donor top up cells. This is as long as the disease doesn’t progress as quickly as it did in 2015, and the hope is that this donor is strong enough to fight a bit harder. They are going to give me donor cells as soon as they are available. And then my next round of aza will be on the 16th July when I get back from my holiday (they had no issues with me having a holiday and delaying chemo one week – only potential issue with me flying as my platelets are low, but I might be able to shift the holiday to all train transport)
We have booked in a Bone marrow biopsy for the 6th August to see how things are progressing after 2 cycles of the aza. Obviously my bloods will be monitored in between to which will be an indicator.
They are also looking into using an immune blocker drug. The drug has been approved for other types of cancer but it’s still in the clinical trial stage for blood cancer. Unfortunately I don’t tick the boxes for the trial as I’ve had a transplant, but they are hoping I will be able to use it on compassionate basis. Failing all of this we will move onto stronger chemo. But their main thing is they want to exploit the donor I’ve got now as much as possible and try and push out my old donor and me!
But the most important thing for me today is that I have left the appointment feeling confident and safe. Not necessarily confident about my prognosis and that we are going to beat it, but confident in my haemotology team and that they are going to do all they can for me.
In other news….. I have contracted shingles… AGAIN…. although this time it is horrific. The rash itself doesn’t look that bad, but oh my god it is painful. Its a consistent nerve pain – so like a shooting pain around the site of the rash that travels down the left side of my body and makes me spasm. The skin all on my left side of my body, and the rash is really hyper sensitive when touched too. I’m on some strong pain killers and anti viral medication, but so far the aren’t doing very much and consequently I’m not getting much sleep. We are upping the dose tonight in the hope I can get some sleep. For those who don’t want to see my spotty booty then look away now!!

Day one done…

…..6 more to go!

Is it strange that is still doesn’t feel quite real that I’m starting chemo again. Even when the nurses were injecting it into me it didn’t feel real! I cycled to work and the hospital like normal (nurses think I’m nuts!). Granted I’m a bit tired but that’s from my besties Hen party at the weekend, nothing much to do with my illness! To be honest I wouldn’t even really know i was ill if it wasn’t for bruises and the blood test results!

Today went without any issues…… Signing the consent form first. Doctor taking me through all the various things the chemo can do to me….Reduce my bone marrow function (reducing red cells, platelets, white blood cells), cause gastro issues, blood clots, organ issues, soreness around the sight of injection, potential hair loss etc etc etc…. What fun it is to go through that! Luckily the last time I had this drug I didn’t suffer too much other than mostly fatigue, so hopefully it will be similar this time round.

Then the nurse hands out my take away drugs….. something to make me poo…. something if I can’t stop pooing….Something to help the nausea…. steroids for inflammation….. And then two nurses stab me with way to big smiles on their faces as I’m whinging that the steroids are going to make me fat!! ha ha!! (Steroids didn’t use to be part of  the regime with this drug, and to be honest I think I might ask to not have them as they weren’t necessary last time. Will see how I go and if I think they are being helpful or not)

Its always with mixed emotions I go to haem onc. I love a catch up with the lovely nurses,  and randomly a good friend I met during previous treatment, but don’t like some of the memories and associations! For the time being I’m just going to try and focus on well I’m feeling and not to dwell on the past. No point!

I did manage to have a little 2 minute chat with my consultant at Peterborough today. i asked him for his opinion on my treatment plan, and he has a similar view to me…. We have tried the aza twice before, maybe now its time for something different. But the problem is what is that??!?! He says there are drugs being trialed in America, etc. Potentially kings might be able to access some of it??? We will see. I’m keen to get the full results of my biopsy and talk to my kings consultant again soon. See what they have to say.

In the meantime, I will slog through this first round of aza, get my top up of donor cells and hopefully be working towards keeping it at bay for the time being. But I’m looking forward to a proper action plan, with a bit of grunt behind it!!

Life’s curve balls…

So it has been months since I have last blogged….. I have very much fallen guilty to not blogging when things are going well! Life is going well, although as ever it likes to send some curve balls.

I’m settled in my new job at BGL. In April I bought my first house and am loving having my own space (probably as much as my dad is loving having his!) The decorating/furnishing is very much still a working progress, but we are getting there!

Unfortunately just as life is starting to fall back into place my health hits it apparent 2 year cycle….. On Tuesday I paid my 3 monthly visit to Kings Hospital where it was flagged that my platelets had dropped to under 100. The decision was made to take a bone marrow biopsy to  determine the root cause, with the hope it was just going to be a blip.

On Thursday afternoon I received the phone call from my consultant telling me that it isn’t a blip and actually my cancer has returned. We are awaiting the full results of the biopsy over the next week or so, but we know it definitely isn’t a blip.

The good news is that we believe we have caught it in the early stages of relapse. This means we should be able to treat it with outpatient chemotherapy drug called azacitidine which I have had before. This will be combined with some top up cells from my donor to try and wipe out the cancer.

Emotionally this has all come as a massive shock to be honest. I’ve been so well and haven’t had any symptoms other than bruising and more frequent headaches, but nothing that would have been a real red flag. I don’t yet feel upset or angry. I think I’ve accepted it, although I’m not sure how real it all feels just yet. Think it will need some time to digest.

My plan is to continue as normal for as long as possible and just take each day as it comes. Treatment will start once communication has properly occurred between Kings and my local hospital and they have fully decided the POA!

Money makes the world go around

Finances and cancer…..

Not always something widely spoken about. I don’t think people realise how difficult finances can be when you get sick. I have been very lucky. I have had the support of a fantastic company and managers in Aimia, Private health care cashback system, and most importantly the support of my family. Others aren’t so lucky – and frankly I have no idea how they cope!! Especially those with children too.

So you get sick…..You can’t work…. Your company gives you sick pay for aslong as they legally have to…. If you are lucky (like I was) you might get a bit longer….. You are then on statutory sick pay….. £90 a week…. £90 a week!!

Of course you are entitled to more benefits, but who knows what they are and how to apply for them??? Who do you ask???

I managed to get ESA benefit, but was denied PIP. I know many people in much worse off positions than me being denied PIP too.

My critical health insurance through work refused to pay out because apparently my first stem cell transplant was the “cause” of my second. And because the first one was before my policy started they wouldn’t cover me.

So with all this in mind how do you look to the future?? I have recently made the decision to purchase a house (with the help from daddy of course!!), but this hasn’t been without some pretty hefty thinking!

Who knows if I might get sick again in 6 months time, 2 years, or not until I’m 80?!?!

I’m now working for a new company who might not be as lenient on sick pay allowances as they don’t yet know me well. I haven’t got any private health to give out cashback. I can’t get critical health cover or life insurance as I can’t afford the premiums…….If I get ill then I almost certainly won’t be able to pay the mortgage and what happens then?!?!

And then another part of me thinks…. if there is a possibility I might get sick again do I want to tie myself down to a mortgage?? Why not instead go see the world?? Make the most of any time I’ve got. (Pretty morbid I know, but I imagine you all know what I mean) OR do I want to spend my life working for corporate companies so I can have a salary that will mean I can afford the mortgage?

When you are ill you shouldn’t have to be stressing about finances!

How has money and sickness effected you? What are your views on the system? Is there enough help out there to tell you what you are entitled to?