Hair Loss

My hair has been falling out more and more over the last few days. Every time I run my hands through my hair about 50% of it remains in my fingers. I’ve been growing my hair for what seems like years to look more feminine but I think those days are over now. Rather than feel sad every time I run my fingers through my hair I thought I’d give my kids some fun and borrow my neighbours hair clippers and let them shear me. So I now have a new look - Bald or headscarf. There is apparently a wig voucher which I think may end up being a longer term look but for now I’m bald.

Sick Leave

My four week sick leave just ended and the doctor took no time at all in immediately signing me off for a further 4 months!

Greetings from the Space Station

After Skyping my neighbours we decided that it looked rather like I was in a space pod and would be fun to tell their young boy that I was in space rather than hospital.  Aided by the poor wifi connection, the images beamed back from Nottingham city hospital convinced even me.

R-IVAC in Toghill Ward

IVAC Chemo, Toghill.

I’m in hospital again with a drip for a week. There are various bags of chemicals which take between 15 minutes and 24 hours to be pumped into me through a drip and pump into my PICC line. There are 2 lines so they can pump 2 chemicals at once if necessary. They take blood out daily to check it for various things. They also flush the line in between each procedure.

Toghill is great and has a good reputation, there are individual rooms with en-suite bathrooms and lovely staff. There are 3 small meals a day and televisions that don’t work. They do have free wifi though which is very slow but way better than nothing given that the drip means I cant even leave the room for a week. My sister gave me her Amazon Prime details so I can watch box sets on my laptop (which I bought specifically for my sanity in hospital).

IVAC chemo

After a few days of relaxing at home (I’d been signed off work for 4 weeks) I had a meeting with the consultant to discuss when and what the next chemo would be. It would be IVAC chemo and start on Monday for a week in Toghill Ward at City hospital.

The consultants had looked again at the pet scan and the number of locations of lymphoma and decided that the whole thing added up is bigger than they initially thought.

They are changing the treatment from the R-CHOP which I just had to something stronger after finding worrying extra bits of lymphoma. The size, location and biochemistry of them are notable and deposits have been found on my heart, kidneys, vertebrae at the back of neck, the muscle on the back of the abdomen, pancreas, bowel etc etc! All of these are small deposits but signal a more aggressive lymphoma.

The main difference of this is that there is a greater risk of relapse later and of nervous system compromise. To reduce these new potential problems Dr Bishton and Dr Martinez-Calle have decided to change my chemo from R-CHOP to a combination of R-COCDOX-M and R-IVAC. 

It will now take place at 3-4 week cycles alternating from IVAC to CODOX-m twice each and I'll have to be an inpatient, staying in hospital for about 4 days after chemo. The programme will be about the same total length but more intense and I'll be staying in a ward.

Although there is less than 5% chance of nervous system compromise, it would be complicated if it is so they’re going to blast it with the new chemo.

R-IVAC  will be 4-5 days in hospital including the actual chemo and an antidote drug to flush the system. The blood must be clear of the drug before they’ll let me home. This will be repeated every 3-4 weeks.

These treatments will almost definitely make me neutropenic (have a low white blood count) which makes me extremely vulnerable to infection. If I get a temperature, I need antibiotics very quickly and go straight into hospital if I've been allowed home.

The timescale and prognosis are the same (ish) but the journey to get there may be tougher.

PICC line and R-CHOP Chemotherapy

In advance of the chemo, they need to put a PICC line in my arm. They say the way to a man's heart is through his stomach. It turns out, its actually through the cephalic vein in the arm. The PICC line is similar to a cannula which is like a usb port to which they can attach any drip into a vein and put stuff in or take blood out. It differs from a cannula which would normally go in the back of your hand in that it goes on the inside of your bicep and is a tube fed up the vein inside the shoulder to near the heart where any drugs will go very quickly round the body. The doctor guides the tube up the vein using ultrasound which sees everything except nerve clusters which she apologised in advance if she hit one. Blimey that hurt! And in a completely different place to where the line was. The PICC line is quite a permanent thing and can be kept in for 12 months. Its very useful and avoids a multitude of jabs.

My dad took over from my mum as I went in to the chemotherapy room. A room of about 12 comfy lazyboy chairs with drips going into unwell people.  I was to join them as an outpatient for about 6 hours where I played chess with my dad and dozed and sat.  There was a young gentleman and his wife opposite me having the same treatment and at one point his wife noticed the drip bag was leaking and some of the chemo drug was in a small puddle on the floor. The duty nurse moved him then put on goggles, facemask, gloves, overshoes and a white SOCO overall to attend to the puddle. What the hell is this stuff they’re pumping into my veins that they need such protection from?!!! 

At the end I was given a bag of tablets including syringes and a timetable of when to take the tablets each day which totalled about 11 a day and injections along with added complications of some tablets to be taken with meals, some without eating, some not with other pills, some on day 3 to 7, some on Mondays and Thursdays etc. My mother and I drew up a calendar of what to take when.  Something was keeping me awake, I think it was the Philastrim injections.

PET/CT Scan Results

I had a meeting with Dr Bishton’s job-share, Nicholas, who showed me the picture of the inside of my body and any areas we should be looking at. He was pointing at a number of areas on the picture indicated by lighter markings which showed where the radiation had accumulated. My focus, however, was on my brain which was glowing bright white. He then explained that as well as the cancer liking sugar, so do brains so this was quite normal also that my bladder would expect to be holding some too. There were a number of areas that weren’t supposed to have sugar which meant areas of lymphoma, heart, kidney, one lung more that the other and my pancreas.  Also present was my keyworker, Cath who explained that this wasn’t as bad as it sounds, that because it is a blood cancer (and so I’d be treated in the haematology department), it was expected to be in a few places where blood goes (everywhere) and that it wasn’t a case of one cancer (e.g. lung) ‘spreading’ to other areas (e.g. pancreas) so one chemotherapy would get the lot of it. I was booked in for chemo.

PET/CT Scan

The pet scan is like the total recall machine which works like an x-ray except it looks for radioactive sugar concentrations in your body.  The preparation for this is to have a drip of radioactive sugar and wait for it to go round your body. Lymphoma cancer likes radioactive sugar so when the blood has pumped it round your body for about 45 minutes it settles in places where there are areas of lymphoma. Then I lie still on a machine which slowly moves me under a machine which takes a 3D picture of the inside of my entire body.  Results would be ready from this and the bone marrow biopsy the next day.

Bone-marrow biopsy.

Where the biopsy of the lump in my neck had taken a bit of the lump out, this was taking a bit of the inside of my pelvis out through a similar process. I asked if she was going to have to drill through the hard exterior of my bone to get to the marrow but it was more a process of pushing hard into my pelvis bone until it got to the middle then the litter grabber needle would take a tube of red bone marrow out which looked like a tiny worm. She’d given me a local anaesthetic which worked except I could feel everything that was going on (if you’ve ever had teeth taken out with anaesthetic its not exactly painful but still unpleasant) there was some pain as she was pushing so hard into my pelvis that it was clearly having some kind of knock-on effect and had a dull ache over a wide area.

"we are talking about cancer"

I went in to the City Hospital with my mother to meet a very nice lady who said “I’m someone who talked to people about cancer...and we are talking about cancer.” She explained that they’d been unsure which of 2 types of cancer it was, had it been the one they originally thought, she was ready to tell me to write a will and that I had 3 months to live. However, she said, it wasn’t that one and the one it was wasn’t so bad. (its a weird feeling listening intently but just hearing words, my mum was taking notes as I knew I wasn’t retaining any of this) In fact, it was Diffuse Large B cell Non-Hodgkin Lymphoma which is not only treatable but curable. The difference being that ‘treatable’ puts you in remission where they monitor you forever as it may return. ‘Curable’ means it’s gone completely like it had never been there. She went to get some literature on the subject and I joked to my mum about how bad something has to be for the sweetener to be that that it’s not as bad as 3 months to live!

We then went on to meet my Lymphoma consultant, Dr Bishton who arranged pet/ct scan for other occurrences of lymphoma and a biopsy of my bone marrow which would tell them more about how strong I was at producing white blood cells and thus the strength of my immune system.

What Dr. Bishton didn't tell me then was that (according to Dr McMillan who I met later) the chemo is more effective when the rounds are closer together at the beginning and that it matters less in the later rounds.

Ultrasound guided biopsy

This was like an injection into my lump except the took some of it out rather than put something in. Of course they had to cut a bit out like a very small, sharp litter picker. Again no instant results but at least they had something to work with.

Ultrasound

Ultrasound for lump in neck. No results of course, just a slimy neck and an interesting view of the inside of my neck. Also, I booked in for a biopsy of the lump. This is where they take a bit of the lump from my neck to look at and see if its cancer or not.

Lump

Shortly before Christmas 2018, I found a small lump in my neck. I thought I’d go to the doctor who said It’d be nothing but as I had insisted that it must be cancer, would book me in for an ultrasound. I was booked in for January 8th by which time the lump had grown and was impeding my speech and breathing. I was getting keen to get on with resolving this thing whether it was serious or an abscess and just required antibiotics.