Tag: piccline

Those who have read my previous blog post will know that I am now awaiting to have a stem cell transplant (SCT)… this process kicked off on the 5th of November… remember remember the 5th of November!

It has now been over 72 hours since i had the chemotherapy drug ‘cyclophosphamide’, the first 24 hours were not as bad as I had expected .. but then yesterday I woke up feeling swollen and bruised, my face and upper body in particular felt battered. I have experienced this with chemotherapy drugs before.. Its just one of those things.. I know its just a matter of patience and soon ill feel better…

This may seem very random, but before i continue with this post I wanted to include some quick facts about stem cells and the transplant process so my upcoming posts make more sense… I really apologise if this feels like a biology lecture.. ill try to keep it short and simple..

What are stem cells?

Stem cells are cells which are made in the bone marrow, they are unique in that they have the ability to change and grow into many different types of specialised cells… such as cells for your liver, your skin.. you name it… but most importantly for patients like me, stem cells can develop into new healthy blood cells.

(Image found on google, link: https://www.cryo-cell.com/cord-blood/about-stem-cells)

What is a Stem cell transplant? Is it the same as a Bone marrow transplant?

Both stem cell transplants and bone marrow transplants involve taking stem cells and transplanting them into a patient who is unwell like myself, to give their body a chance to make new healthy cells. The difference between the names is simply down to how these stem cells are collected… a stem cell transplant involves collecting the cells from the blood stream, whilst with a bone marrow transplant the cells are collected directly from the bone marrow (much less common these days).

What are the different types of stem cell/Bone marrow transplants?

There are two types:

  • Autologous (stem cells taken from the patient themselves) –> what im having
  • Allogenic (stem cells taken from a donor e.g. Sibling, relative or someone on the bone marrow register)

What type of transplant is chosen depends on multiple factors, in some cases the only option is to use cells from a donor (allogenic). In my case based on my age and my scans, my doctors advised that using my own cells has a lower risk of death (as using someone else’s cells means a higher chance of rejection and long term complications).

It probably sounds odd that my doctors would carry out a transplant using my own stem cells… well as stem cells haven’t yet divided or changed, they haven’t had the chance to become cancerous (cancer cells form when a healthy cell begins to divide abnormally).

My doctors want to give me high dose chemotherapy to kill off any lingering cancer cells, but in doing so my bone marrow and immune system will be damaged. By taking my stem cells and freezing them beforehand, the cells can then be transfused back into my blood after I have been given the high dose chemo… hopefully these stem cells will then move back into my bone marrow and start making new blood cells.

(Sorry about the biology lesson.. i promise its over!)

I may have oversimplified my explanation and made it sound like the process is a walk in the park.. i am at the early stages. I don’t want to overwhelm myself or you…

So.. back to the 5th of November… the day my transplant process started..

This day was all about receiving a chemotherapy drug called Cyclophosphamide.. the job of this chemo drug is to “mobilise” my stem cells.. making them move out of my bone marrow and into my bloodstream, making it easier to collect the stem cells. The actual stem cell collection happens about 11 days later.

The Cyclophosphamide chemo is given over 2 hours as a IV drip.. but for an hour before i was given “pre medications” including anti sickness medication and steroids also through a drip. After the chemotherapy was over, i was then given tablets (‘Mesna’) to take to protect my bladder from bleeding, which is the main worrying side effect from this chemotherapy. I had to also take these tablets along with all the usual cocktail of drugs when i went home. Thankfully so far – no bleeding from the bladder!

Having had so many treatments I have pretty much become accustomed to all the side effects and dramas that come as a by product.. but what will always be difficult for me to deal with his hair loss.. i had just managed to grow enough hair to cover my scalp.. and i had began using my baby hairbrush to smooth down those fine hairs.. i had began looking in the mirror again, seeing glimpses of my old self… and now here i am again… beginning to loose my hair again.. cyclophosphamide makes your hair fall out, and the upcoming high dose chemotherapies ill receive will make me go completely bald again… it probably sounds ridiculous as i talk about hair loss so much.. i know my hair will grow back.. but it just doesn’t get easier.. this constant unasked-for change.. its like your identity keeps changing.. don’t get me wrong i love myself, God has blessed me with enough confidence to accept myself how i am… but for me its no longer about looking feminine and having long hair to brush and style.. its just simply wanting consistency.. not dealing with this constant cycle of change.. first world problems? Or maybe cancer patient problems..

Quick mention and thank you to my amazing lymphoma pharmacist and psychotherapist who have both worked to help me deal with all the side effects of chemotherapy.. there was a point when i would feel sick just entering the hospital (anticipatory nausea)… their continuous support and care has really made a difference.. there are really many amazing unsung heroes in the NHS..

The day after receiving cyclophosphamide chemotherapy I started taking GCSF injections (I have talked about them before – basically they stimulate the bone marrow to produce more cells… in the case of having a transplant.. the more cells which are produced the more there are to collect and freeze!).

Today is day 3 of taking these injections.. i have had them before so know what to expect.. I usually take them for a maximum of 5 days and they gave me really bad pain in my back and chest bone.. for the transplant purpose i need to take these injections for at a higher dose for 10 consecutive days!! I have been warned that the pain will be significantly worse.. my nurse called today to check I wasn’t in too much pain.. so far so good… watch this space for updates!!!

So whats up next? I will be back in hospital next week to have my stem cells collected.. i hope to able to document it all and share my experience with you!

I’m sorry my last post was very rushed.. I didn’t get a chance to thank each and every person who still bothers to follow my journey.. I really appreciate all the support.. my story is in no way as dramatic as what other cancer patients go through.. my heart goes out to every person whose life has been affected by this unforgiving illness.. together we have to all stand up to cancer… lots of love and positive energy to you all xxxx

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“Cancer changes people.. It sculpts us into someone who understands more deeply, hurts more often, appreciates more quickly, cries more easily, hopes more desperately, loves more openly, and lives more passionately”

A random quote I came across on google.. typical of when your bored and google everything including how to fix the unbroken kitchen sink. What really caught me in that quote is “hopes more desperately”.. and that is where i have found myself time and time again.. when you are so desperate you can easily go off character.. to others you are irrational… but to yourself your simply fighting for hope.. ill explain more…

Since my last post i have had two more chemo sessions and a further scan.. it has been a bit more long winded than wanted..

After my initial scan the plan was to go ahead with a stem cell transplant, but i was in disagreement with my doctors about what type of transplant to have (whether to use my own stem cells or use that of a donor).

Before anything could be set in stone i unfortunately began to break out in a itchy rash.. identical to the one i had previously when my cancer had come back. I was told i would need a repeat scan before a final decision can be made on my transplant. It was this flare up that pushed me into mentally spiralling out of control and finding myself in a whirlpool of distrust in conventional treatments..

The days leading up to my repeat scan result were very intense and difficult.. probably the most stressful time i have experienced.. more so than any time before.. i can imagine some people are thinking “if you have enough faith you shouldn’t be anxious or stressed”.. but it isn’t as simple as that.. however strong your faith is, however many prayers you read and however many people you have behind you.. there is always that simple human instinct for survival… an instinct which is driven by fear and desperation.. resulting in a concoction of stress and anxiety…

Its this desperation which at times pushed me out of my comfort zone, away from my firm medical beliefs and left me seriously considering alternative medicinal options including the use of cannabinoids and travelling abroad to seek the help of a healer.. i will delve deeper into this controversial topic in a separate post. Thankfully i didn’t need to follow through with any of these alternative options… all thanks to God.. God is love.. God can make any difficult situation seem so much more bearable..

After having more chemo my scan was repeated and finally there is now plan in place, i will still go ahead with the stem cell transplant and more importantly I am now in agreement with my doctors.. hallelujah!

I have always written honestly… i’m not one to shy away from being critical when I have had a bad experience. But I have to say the medical team who have been looking after me have been really great. Despite not agreeing with their plan initially, I was given the opportunity to discuss my ideas and concerns and reach a decision after feeling I am fully informed.

I captured the picture below when one of my doctors was explaining the various risks depending on the type of transplant. I have always been convinced that if i was to have a transplant i would use cells from a donor as this would give me a new immune system. However what my doctors tried to explain to me was that using the cells of a donor comes with a death risk of up to 25%.. much higher than the 1% risk of death using my own cells..

The plan going forward is to have a stem cell transplant.. using my own stem cells.. known as an “autologous stem cell transplant”.. i am aware that most readers wont know what that is or what it involves.. i plan to document my transplant journey in depth and explain all this.

Today i am back in hospital.. waiting to have a new chemotherapy drug ‘cyclophosphamide’… this will kick start my stem cell transplant journey which will take two months from start to finish. I will break up the different stages of my transplant journey into separate posts so its clearer.

Please pray for me that today goes well.. i am now strapped to the drips.. and can only hope for the best.

Lots of love and positive energy to everyone xxxx

New PICC line.. And a blood clot..

Finally today i had a new PICC line put in!!!! Unfortunately its not all good news..

I should of had a PICC line put in yesterday by the vascular team (doctors who specialise in blood vessels).. I went into hospital at 12pm to first have some blood tests.. I then waited till 5pm.. Only to be told that they wont be able to do it as they are running late and there is a patient before me who is still in the operating theatre… Not fair? Not ideal? Oh well.. It really isn’t anyones fault.. These things happen and you’ve just got to take it on the chin.. I was told to come back in the morning at 9am to have the PICC line put in.. Not too bad..right?

Before i move on.. Can i just say i met some amazing ladies during the time i spent waiting for the PICC line.. Other patients who had come for different procedures.. I feel so blessed that somehow wherever i go on my journey i am getting the chance to meet some lovely lovely people who really leave a mark.. These ladies shared their stories with me of their health problems and also the stories of people they know with cancer.. They were so so lovely.. They showed me so much love, support and kindness.. Lots of encouragement and advice like “drink beetroot juice”.. One of the ladies is so special.. She has run multiple marathon for good causes and really is so giving.. I feel privileged to have met such inspiring strong women.. There really are truly beautiful humans in this world!

Back to my story.. So i was told to come back the next morning.. Which I thought isnt too bad.. And to be honest i am really thankful my PICC line could still go ahead as my blood tests yesterday showed my white blood cell count (neutrophils – which fight against infections) had dropped to 0.3 – not great – but i am on injections for my immunity and on antibiotics to try and prevent infections.. 

So this morning off i went back into hospital – i turned up at 9am as i was told.. Unfortunately there was no doctor to see me.. I was told the vascular doctors are busy doing a ward round and i should wait.. So i waited and waited and waited.. and then got bored (there were no friendly patients to chat to like yesterday).. So me and my mum decided to sit in the hospitals costa for a change in environment.. We then got bored and decided to head back to the ward to see of there is any news.. 

On the way back in the corridor i bumped into a nurse who specialises in training doctors and nurses how to put PICC lines in (she works for a external company and not my hospital – i met her when my first PICC line was put in).. So i told her how my first PICC line became infected and how i was waiting for the vascular team to put a line in for me but they are too busy.. So she kindly offered to put it in!! I was absolutely delighted because the vascular team had still not got back and to be honest i was fed up of waiting!

This nurse is excellent with so many years of experience – i wish she worked for my hospital! Before my PICC line was put in she looked at my right arm which had my original PICC line – she pointed out that the colour of my arm appeared different and the veins higher up in my arm were very prominent as were the veins in the top part of my chest – she immediately said “i am sure you have thrombosis in a vein supplying your arm” (a blood clot).. She immediately picked up the phone and called the vascular registrar.. He came and examined me and arranged for a “doppler scan” – basically an ultrasound which looks at the flow of blood in your blood vessels..

Unfortunately as you may have gathered already (from the title! Im not expecting anyone to interpret the image above..) the scan confirmed i have a blood clot partially blocking one of the veins which goes to my arm..

The clot is where the circle on this image is – in my subclavian vein (image taken from http://img.medscapestatic.com/pi/meds/ckb/00/39400tn.jpg)

So.. Why do i have a clot? Unfortunately cancer increases the chance of blood clots forming as your blood is more sticky.. Also having a PICC line puts you at higher risk.. I developed this clot where my old PICC line was…

Thankfully i am well.. I am alive.. Its just another hiccup but that’s life! It’s never boring!

I now have to inject myself daily in my belly with a medication which thins the blood.. no big deal..

If your wondering why I hadn’t picked up on this myself sooner (i am a doctor – surely I should have?).. The honest truth is with so much going on i don’t have the mind set.. It may not be a good enough excuse – but I really do not look up at my upper arms closely – i have stopped looking at my face in the mirror let alone noticing changes in my upper arm.. Listening to the body isn’t enough.. I guess ‘listen and look’…

Anyway…

I have a PICC line!! Hopefully my next chemo this Friday will be pain free..

Tomorrow i’m back in hospital for more blood tests and to see my consultant and Friday is my chemo..

That’s all the medical things..

Tonight is the night of ‘Ashura’ (whoishussain.org)

This is the first time i am unable to attend the mosque on this holy night.. It really breaks my heart.. Even when my dad was unwell following his accident i still managed to attend.. Anyway.. I ask all those attending the mosque tonight and tomorrow morning to remember me in their prayers.. I pray next year i am well enough to attend in person.. But i am still thankful and very blessed that i am able to watch the live coverage on TV..

Sending you all lots of positive energy and prayers this night

(I apologise for being slow at replying to messages – especially private ones)

XxxX