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!