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!

Going home isn’t always easy

On Saturday I was discharged from the ward. I find this very hard to put into words and explain but I was actually a little apprehensive about going home. Being in hospital is horrid, you get no rest and constant interruptions, but after being in so long you get used to it all.

After a few nights I no longer need sleeping tablets or ear plugs and I can sleep through the call bells and phone rings. You learn to cat nap between the 4 hourly observations and iv set ups and pump bleeps. You get used to what time to expect the nurses/doctors to come in bearing gifts. You learn the food menu off by heart. And after being here on and off so many times you make friends amongst the nursing staff.

So despite longing for my own bed and some peace and quiet, when you actually get there it’s a bit daunting. You don’t have anyone dictating your daily routine. You don’t have people popping in to chat to. It should be liberating, and it is in many ways, but in others it’s not.

I think for me I find it hard because I know whilst my immune system is so low then another infection (and there fore admission) isn’t far away. And in this instance it was a lot sooner than expected!!

After spending the weekend stocking up on yummy food to feast on I woke up Monday morning with a fever, and a pretty high fever at that!! I couldn’t believe that I really could have another infection already. I’d even had a final dose of IV antibiotics on Sunday, surely nothing could survive in my system with all that?!? I did the stupid thing and lay in bed in denial, hoping the fever would magically disappear after a snooze and I could go about my day as planned. 2 hours later it was still there do I did the right thing and phoned the hospital and was told to come in.

I decided I would have a final shower at home before heading in. Hindsight, this wasn’t the best of ideas!! I remember getting out of bed, walking to the bathroom, stripping, stepping into the shower, and then waking up on the shower floor and seeing this squashed bottle!! Ha ha!!

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Yeouch!! My lady bits got a bit of a bruising!! Ha ha!! Luckily no damage was done, and it’s just become a funny story to tell. My brother kindly helped to pack all my bags and I wobbled my way to hospital. And here I have been since on a cocktail of antibiotics and blood products keeping me going!

Temperature has remained normal since Tuesday. My infection marker (crp) is slowly coming down. So I’m hopeful that home isn’t far away, with maybe some daily visits to finish off the Iv antibiotics. We will see…. Keeping my fingers and toes crossed to try and get home, and have some more time to get settled. I need to spend time with my kitten before she becomes a cat!!

 

 

Hospital Antics

After being in hospital a while its strange the things you start to find entertaining and how you get your kicks! I don’t tend to realise how odd my sense of humour has become until someone tells me!!

As my PICC line hasn’t been in use then I’ve been having to have quite a few canulars inserted. When giving chemo the nurses have to use veins below the elbow, so its more visible if the canular tissues and the drugs start to go into the skin. Typically my veins in my hands and forearms are rubbish, so I prove to be quite challenging!! These days after having so many needles I’m totally not bothered by them anymore, so weirdly I now find it quite funny watching the nurses struggle and threaten them with 10 press ups for every time they miss!!

Sunday night I was in fits of giggles as my night became more chaotic. Firstly I decided to have a low grade fever, and because I hadn’t had a fever for a few days it means they needed to re do all my blood cultures, etc to check it wasn’t a new source of infection and to administer a stat dose of different antibiotics . My Nurse decided to finish doing my chemo, then to come back for blood cultures. Starting to do the chemo procedure and just putting the saline down my canular was really painful. She managed to administer half my antisickness and then we decided it was too painful to give the chemo down it. So I needed a new canular….. this was like 9pm at night!

So just this alone made me giggle as I know its the last thing the night shift wants to be doing! My nurse had one attempt, but my veins were not playing ball.  Nothing was showing up. So she called down the IV nurse to have a go. Whilst waiting for the IV nurse to come the skin round my other canular had all gone red and lumpy, I had hives! Tracking down my arm where the vein went! No idea what this was about as I hadn’t had anything to cause an allergic reaction! By which point me and my nurse were both laughing as it was so ridiculous! I was shouting out to the other nurses that my nurse had “broken me” and if I could swap nurses!

The IV nurse managed to gain access to a vein after two attempts and a lot of blood spillage! (Disappointingly neither nurse did their press ups….) The hives went down within about 10 minutes of coming up. I got my blood cultures done, new antibiotics in and chemo done. And all ready for bed by 11pm!

Other things that are a great source of amusement are winding up the student nurses/doctors. I was asked to chat to some baby medical students yesterday about my conditions and time spent in hospital. I had been trying to plan a way to fake something being wrong with me to panic the students and see what they would do. Or just to feed them a few lies about the hospital system. But in the end they seemed too nice to do anything horrid to, so I left them alone and answered their questions!

Update on me

So after days of debate my PICC line is finally back in use!! (Frustratingly this is after all the really nasty chemo has been given, and at least one of my veins has corded, the other two are just a bit sore so hoping they will recover) This means I no longer need to have a daily poke from the phlebotomist and I have much easier IV access.

Chemo is well over half way now. The horrid red stuff is finished and I’ve just had dose 14 of 20!! I’ve been surprisingly well on it so far. Feeling nauseous and fatigue is catching up with me, but most days I have been well enough to get out for a little walk or something and enjoy the sunshine for a bit!

 

 

 

 

Back on track

So plans got a little bit derailed this week. Over the weekend I got admitted with some unknown form of infection which led to neutropenic sepsis. (This basically means I was unwell with fevers as the bacteria gets into your blood stream).  Standard protocol done, admitted via A+E, blood tests done, blood cultures taken, chest x ray, and IV antibiotics given. Amazingly I also got a bed on my haem onc ward that night.

So the crappy thing about this was that my CRP (infection/inflammation marker in the blood) kept creeping up over the weekend, rather than showing signs of going down). So this meant that I wasn’t able to start my chemo on Monday as planned, as it is too dangerous to wipe out my blood cells further with the chemo whilst I’ve got an active infection.

What is strange about all this is I don’t think I’ve ever been so keen to start chemo. Mentally its quite tough knowing that you’ve spent 5 days in hospital and that once the infection is gone you won’t be sent home, instead you have another 10 days in hospital having your chemo (assuming I manage to stay infection free for those 10 days!!)

So standard me I kept pushing everyone to try and find out when I would be deemed “well enough” to start my chemo, and then we got some bad news. My consultant had ordered a routine CT scan of my chest just to triple check there was nothing fungal going on in there. In the CT report we found out that the PICC line Kings inserted last week was in the wrong place!! It was coiled up in my vein and pointing the wrong way! This now means my PICC line is out of action, and technically I can’t have any chemo!! (For some reason Kings don’t routinely do a chest x-ray after PICC line insertions to check they are in the right place……….)

After throwing my weight around yesterday I managed to get agreement that I could have my chemo through a canular in my arm instead. I was determined that I wasn’t having a wasted day in hospital!! So I found my specialist nurse to consent me and I had dose 1/20 yesterday afternoon. Having it through the canular did make things interesting though! The canular was taped down and I was instructed not to move for the hour it was going through (You don’t want the canular to dislodge and end up getting chemo in skin tissue). Also being administered through a small vein in my arm it was a bit uncomfortable (itchy and burny) so I wouldn’t recommend it.

This morning we have completed dose 2/20, and we are keeping our fingers crossed that the PICC line can be fixed before my next dose of the itchy burny stuff, but I have a feeling that probably won’t happen. Kings are going to be getting a politely worded email this afternoon!! ha ha!

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!

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!