5 days to the end of Chemo….and other interesting numbers!

Hi everyone,

Well I can’t believe I’m actually saying this, but it is now just 5 days to go to my very last Chemo treatment!

I’m anxious, excited, emotional, relieved and exhausted, all in one big bundle. It’s been a long time coming and I can’t believe how much as changed in both my world and the big one out there since my diagnosis in early November.

Our last holiday in Wales at the end of August, a beautiful sunny week and I was completely oblivious of what was to come.

         

In just two months, my neck went from the left hand photo to the second black and white photo, by the time I started treatment it was easily the size of a golf ball but more eliptical. Looking back at the previous photo, I can now tell it was there and probably had been for some time, the skin is flattened out above the collarbone, compared to the right because of the swelling that was growing underneathe.

On one of my many chemo insomnia fuelled nights, before my 10^th session I think, I made the bad decision to try and work out a load of statistics to do with my treatment, lets just say it did not help me get back to sleep!

When I wrote my piece after my interim scan, many were surprised by the sheer number of staff involved in what it takes to get someone through cancer treatment, and so I thought I’d also write all these medical stats down, to give you the real picture, this is what it takes to get someone to the end of a relatively short (in Chemo and Cancer terms) journey, compared to some.

The Lymphoma Cancers; Hodgkin’s like mine and Non Hodgkin’s are considered in the medical profession to be the ‘good’ cancers, if there is such a thing, in that the treatment is so effective, and I know that to be true in my case judging by how quickly my main lump of the 5, on my collarbone shrank away. It was pretty astonishing.

But what they try to not fully disclose (as it would scare the pants off you!) is that this is probably because Lymphoma cancers can be very fast growing, and so they have to get on top of it fast, by hammering you with these very powerful but toxic chemo drugs every 2 weeks in order for it to be successful.

Many other cancers require treatment every 3 weeks and I’m not sure which I’d prefer, whether to get through it faster, albeit the side-effects are pretty awful, or to have another week’s respite in-between.

I am going to talk more about this roller coaster journey and the lessons I’ve learned next time, after my last treatment, simply because I don’t want to tempt fate – remember I did get admitted into hospital on my Birthday morning for 5 days, for that joyous experience of Neutropenic Sepsis – I mean what are the chances?

So here are some fun numbers to get your head around, I can’t even imagine how much it would cost but I am hugely grateful for our amazing NHS system, along with the care of all the staff involved which money just couldn’t buy.

Chemo Journey Medical Statistics, in the rough order they occur

1 lump on my collarbone, measuring 2 x 2 cm initially

Initial Apts – 2 GP, 2 ENT (Ear, Nose and Throat) at Barnsley Hospital, 2 Diagnosis Appointments with Haematology

Biopsies: 2 Core needle biopsies – 1 on my neck, 1 under my arm

Scans & X-rays – 1 Ultrasound scan, 1 CT Scan, 1 MRI, 3 PET Scans, 3 chest X-rays (to check picc line in right place and also when I was poorly to check for infection)

5 Lumps found in total – Neck, under arm and 3 in my chest. By this point the one on my neck was 4 x 4cm

7 long excrusiating weeks from first GP appointment to confirmed diagnosis.

Stage (how they stage your cancer) – 2B – which means, more than one lump, but above the diaphragm, and with symptoms (the B part). This then determines your treatment.

Function Tests – 1 heart, 1 lung, (to see what your baseline is as the drugs can effect your heart and lung function further down the line)

Picc Line (a tube they put in your arm to administer the drugs) – 1 put in and then taken out – many arm swinging episodes when it was blocked!

1 wig chosen (but thankfully not needed for a while, infact I didn’t shave my hair to a grade 4 until my 10^th chemo session, and only because my husband told me I looked like a baby orangutan!)

36 Chemo related apts – which is 12 sessions x 3 apts for each which are: picc line dressing change, blood tests and consultant apt to check you are ok for next session and the actual Chemo Session itself (usually 2-3 hrs).

4 Different types of chemo drugs that have incredibly toxic sounding names such as Vinblastine and Doxorubicin, even the sight of these names now makes me feel sick.

Injections:

At least 30 at home self-injecting medication that you do into your stomach (this is to increase your neutrophil white cell count to make sure you’re OK for next chemo)

4 cannulations and 14 injections during my hospital stay of 5 days

1 All Clear PET Scan result, after just 4 sessions of chemo! Unfortunately, you still have to carry on to the end of 12 sessions to mop up any individual rogue cells.

Weight – Lost 10 pounds whilst on Chemo

And finally, I’ve lost count on the following:

• Number of times temp, blood pressure and weight have been checked
• Number of tablets taken, from chemo related drugs, anti-sickness, antibiotics, co-codamol (to stop aches) and sleeping tablets
• Number of sleep hours lost, at least 10 full nights on the night after chemo and then after that is anybody’s guess but I have spent more hours awake than asleep over the last 6 months at night. I’m praying this changes once I stop!

So, I don’t know about you but when you add it all up, I think it’s a mountain of care and medicine, but I guess that’s what it takes to blast your body free of cancer.

I’m a bit of a loss as to how I’m feeling right now, I go from elation it’s all over to ’oh crap this is going to be a new normal’, where fear now plays a part in my life, which to be honest, it never did before.

By that I mean, back to the anxious waiting of appointments and follow up scans, checking it’s not returning and the other fear of what if  get a secondary cancer, of something else, which can happen

By going through this you add a whole new bunch of statistics into your life, not least that you are currently under threat from Covid-19 now too.

The worst part about it happening now? I can’t even celebrate as I’d wish to, thanks to the other bloody C word!

I’m putting off ringing the bell until after my final PET scan (that fate thing again) and hopefully by then I’ll be able to take my family and a few friends with me as well as give my chemo nurses a great big hug.

         

I can’t wait to get back out for drinks with this one after the toughest year ever and back out proper walking with Barley, I need to get my fitness levels back up!

For me there’s another 6 weeks of lock down at least, but I‘m praying that we get to the end of this awful pandemic asap, and I can tiptoe into the outside World again, a place I haven’t been fully since November last year. It’s going to be a very strange experience.

In the meantime, I’ve got to stay well for just 5 more days, get the last treatment done and get my picc line taken out which will be fab – I’ll be able to finally have a shower without the plastic cover on!

The many stages of hair and reducing eyebrows I’ve been through, but I’m not brave enough to show you the bald/fluffy chicken look!

I will also be growing my hair in the privacy of my home and garden and trying to at least get a cute pixie crop rather than my current fluffy baby chick look by the time I’m allowed back into society!

This is the picture that encapsulates what I want to get back to, wind-swept, carefree and healthy looking, it’s going to take a while but I’ll get there…

This coming Friday, my poem will be published for the Yorkshire Writer’s Lunch Blog, that coincides with that last chemo session, and so it’s all about my chemo journey, I’ll pop it on this Blog too.

Until next time, I hope you are well, staying home and staying safe, there’s a whole bunch of us on the 12 weeks full lock down, and you are helping to keep us very safe too, so thank you!

Take care, Juliet, The Curious Creative x

Ps Last week I did another Blog for Psychologies online Life Labs series, all about how ink sketching can improve your well-being, it’s here if you would like a read

PPs – For anyone wanting to know more about Hodgkin’s or Non Hodgkin’s Lymphoma, you can find the best up to date information here at Lymphoma Action 

PPPs – If you are in need of a good novel to read, I can highly recommend Magpie Lane by Lucy Atkins, who is also currently doing Insta Lives on Psychologies Magazine’s Insta on how to write a novel that are proving very useful!

Magpie Lane is keeping me entertained in the small hours when I can’t sleep! Completely gripping and really unusual, I love it!