07 Immunotherapy (Cycle Two)
THIS IS LONG, REPETITIVE AND BORING UNLESS YOU ARE A PATIENT ON IMMUNOTHERAPY SO BEST IGNORED IF NOT :-)
Friday 7th August: My second cycle of Immunotherapy, I have been told that this one will knock you sideways so I'll keep a daily diary (neglected first time...bad!). The session went OK again, no problems, took around three hours. I'm impressed with the team, they are non stop busy and so nice and friendly, wonderful people! It was a late appointment and I didn't get home till 19.45, something lite to eat and an early night. There is a heatwave in the UK at the moment, nights are hot and sticky, I slept fine.
Saturday 8th: No issues just tired all day but the girls came to see us so a fun filled day of laughter kept me busy and the Test Match was brilliant, no idea how England pulled it off but fair play, great game.
Sunday 9th: Same again really, just a very tired and very hot day. The itching is back though and not the best thing in this heat. Could be worse. I have been getting dizzy spells, usually if I get up from a chair too quickly, these seem to be all the time now!
Monday 10th: Rubbish sleep and struggled to wake, not on top of my game today. Two issues alongside the remorseless itching. Firstly, I started getting stabbing pains deep inside my head, they came and went on and off throughout the day, uncomfortable. Secondly, I started getting a very sore right arm, in the joint of the elbow/bottom of the bicep. I was unable to straighten my arm. I was more concerned with this as I have read about joint and muscle issues following Immunotherapy. Decided to report to the Oncology team in the morning if either issue persists.
Tuesday 11th: Another rubbish nights sleep, I am barely sleepwalking today, everything, including walking upstairs is a real effort. Got to midday and I went back to bed for an hour. Positives, head and right arm are OK today. But I will obviously monitor.
A bad day, zero energy and the continued heatwave is making me struggle even more.
Late evening headache, dull ache over my left eye, not major but annoying, Took two Ibuprofens and went to bed at 22.30
Positives No.2, my blood sugar was 5.1 this morning so something is going well then!
Wednesday 12th: Slept through for eight hours solid, did not wake once, amazing for me. Unfortunately still zero energy so a struggle again, incredibly yet another draining heat day, hot and humid.
Late evening headache again, same place, Took two Ibuprofens and went to bed at 22.30 but so hot struggle to sleep and head is annoying me.
Thursday 13th: Still hot and humid but I have more energy today, thunderstorms are promised for the afternoon. Headache was still there after I woke but cleared after a magical cup of tea! Itching still there. 20 minutes in the Gym first thing in the morning.
Had a call from one of the Oncology Nurses to check if I was OK with the Immunotherapy. All good, next Immuno session is confirmed for 28th August @ 16.00. MRI confirmed 25th August @ 09.15
Current default position: Still in the Gym, trying my best- listening to Led Zeppelin - Houses of the Holy
Another from 1973, no one makes albums like this anymore. It brings back so many memories, Led Zeppelin were massive back in the day, biggest band on the planet and rightly so
Friday 14th: Humid and itchy nights sleep so woke up tired. Zero energy day so watched the cricket. Started using my walking stick going up and down the stairs as I wobble due to the dizziness, I did miss a step yesterday going down but was holding the handrail fortunately.
Saturday 15th: Good nights sleep plus 20 minutes in the gym so a good start to the day. Humidity is better and day is cooler which helps. Dizzy most of the time. Three months since diagnosis!
Sunday 16th: Good sleep and feel fine today. Did 30 minutes hard work in the gym which did not wear me out for the day. Best day for ages. Still dizzy but almost getting used to it now.
Monday 17th: Getting strange aches and pains in my right arm again. This time the shoulder and neck. It comes and goes so tolerable. Busy day as we have friends coming for a BBQ. Not seen them since lockdown so looking forward to seeing them again. Dizzy spells not as bad today, is this easing?
Tuesday 18th: Lazy tired day after the BBQ, great to see the guys but I lack the stamina, still really enjoyed it. Today it is my neck that is causing issues.
Wednesday 19th: Loads of energy today, did 30 minutes in the gym. Slowly feeling the strength returning but careful not to push it. Phoned the Oncology team about the pains but got voicemail, they will get back to me asap. Today it's the shoulder again. Spoke to one of the team and discussed the right arm issue, they will get back to me on Thursday.
Thursday 20th: Bad night, awake from 01.30 till 04.00 then woke at 06.45 with a headache that would not go away, so a rubbish day. Bit tired and not at the top of my game today. However, looking on the bright-side, I managed 1/2 hour in the gym and after many frustrating months my fingers are once again making music on the mandolin, I feel like a beginner again but there is much progress that has taken me a few months to get there, onward and upward!
Current default position: Working hard in the Gym - Listening to - The Levellers - 3rd Album
One from the 90s for a change!
I love that folkie punk sound, I must get out my Ferocious Dog CDs as well, great bands for the Gym, not so great for snoozing!
Friday 21st: Good day, 35 minutes in the gym. Weighed myself and down to 15st (210lb) from 16st 1lb (225.4lb) since the end of June when I came off Steroids. Blood sugar down from 29 to 5.1, although this varies daily it's always around 5 to 6. Bundles of positives today. No issues. Oncology Nurse called back regarding the issue with my shoulder, this was discussed with the Consultant but no alarms for the time being.
Saturday 22nd: Good day again, 35 minutes in the gym and my recovery time is getting quicker. Lazy day, a bit of gardening, watching the cricket and a visit from Siobhan. All going well
Sunday 23rd: So the start of a big week. Bloods, MRI, Consultant meeting and Immunotherapy cycle three. Looking for good news for a change. Good start again today with the gym, must start pushing it soon.
Monday 24th: Feeling good still, 35 good minutes in the gym. Blood test, I think the nurse used a knitting needle, got a bruise and lump on my arm. Friends came around in the evening, not seen them since last year, had a good catch up and great fun.
Tuesday 25th: Early start as MRI appointment for 09:15, awful weather, rain hammering down. Delayed start and not finished till 11 so hoping for some good results on Thursday. Bad head started around 21:00, took 2 Ibuprofen and went to bed around 22.30
Wednesday 26th: Not good, woke at 2, head still banging. Woke at 6 still the same, tried two more Ibuprofen and went over the gym but nothing worked so went back to bed. Finally cleared (almost) at 17:00. A wasted day but I have had a few of them over the years with my head
Thursday 27th: Woke with a headache again but nowhere near as bad as yesterday, just a foggy day I guess. No gym as I felt sick and tired. Excellent meeting with the consultant, the tumours are responding to the immunotherapy and shrinking and blood test shows blood sugar at a respectable 5.1. One point of caution, there is evidence of swelling in the brain again. Probably as a result of the activity with the Immunotherapy. The Consultant mentioned steroids as a solution but would not recommend unless this became a major issue as it will interfere with the work of the immunotherapy. From my side, I have just got my blood sugar under control and would prefer not to risk it so no change for the time being.
Bad start but a good day in the end. On to cycle 3.
Current default position: Still in the Gym, still trying my best...
Current Favourite CD: Justin Townes Earle - Harlem River Blues
Sad news this week that Justin has passed away at the ridiculously early age of 38, way way too young and will be sorely missed
Immunotherapy (Cycle Three)
Friday 28th: Cycle three day, is this the big one for impacts/ side effects. I have read a lot of negative reports on Cycle three so certainly concerned. Issues going forward are the headaches which are becoming more frequent and the joint pains which seem to be spreading. Issues with my left shoulder and right knee but on and off. Right shoulder joint is permanently aching.
Late appointment and called in at 16.35 so not too bad. The infusion took over three hours so almost 20.00 by the time all was completed. No issues though, it's well worth the effort. The team as usual were amazing, they work twelve hour shifts but always remain happy and helpful. No issues with the infusions all went well. Got home around 20.30, something to eat, chilled for a while then went to bed at 22.30. Barely remember getting in bed I was so tired.
Saturday 29th: Woke at 01.05, not what I had in mind. Took ages to get back to sleep, too much going on in my head. Eventually got up around 08.00 and just having a lazy morning. No issues from yesterday just tired. Head OK, right shoulder aching. Noticed a lump on the top of my head, sore to touch and tender around it. Monitor
Sunday 30th: Got up at 05.30 and read the paper. I feel very out of breath today, all a bit of a struggle to be fair. Rash on upper body appears to be getting worse but itching not as bad (thankfully). Limbs ache and lump on my head is very tender. My cousin Will and his son Garry came down to see us, not seen them since lockdown so had a nice afternoon catching up.
Monday 31st: Can it really be the last day of August already, not been a great year but the summer was wonderful! Amazing ten hour sleep, woke at 08.08, I never sleep that long. Felt tired and achy but did the gym for 30 minutes and felt OK afterwards. Right arm still playing up. Lethargic day, went to bed around 21.45, not feeling great and headache brewing, took two Ibuprofens. Went to sleep before my head touched the pillow.
Tuesday 1st September: Woke at 00.20 with a banging head, felt awful, took a Maxalt for migraines. Went back to sleep eventually and never woke till after 8, headache gone but foggy head and no energy. Today will be a nothing sort of day, no appetite for anything. Good days and bad days. Bad head returned around 17.00 and annoyed me for the evening. Breathlessness is not improving and impacting my energy.
Wednesday 2nd: Breathlessness is not good and energy levels shocking. Called the team at the hospital and was advised to ring the Acute Oncology 24 hour emergency number. They called me in for tests and a general check over. Loads of blood tests, vitals etc and a chest
x-ray and it appears I now have a chest infection to go with all the others. More antibiotics! Got back home around 17:00. Head started aching again and went to bed feeling awful at 21.00.
Thursday 3rd: Wonderful, woke at 01.20, head now proper banging so no chance of going back to sleep. Taken just about every med I can get my hands on to help cure but wasting my time. Went downstairs, got a cup of tea and ice pack. Went back to bed and put the ice pack on my head which helped, last time I looked at the clock it was almost 04.00 woke again at 08.20. Another nothing day coming up but guess I am lucky that I can do nothing days.
Got to 14.00 and went to bed for two hours. Totally drained today. I've had better weeks, Cycle 3 is a challenge
Current default position: Laying down whenever I can and doing nothing
Current Favourite CD; Richard Thompson - Still.
England greatest ever guitarist, includes the killer opening track of 'She Never Could Resist a Winding Road' a thing of beauty in a bad week
Friday 4th: No change today really, seem to have been awake half the night. Still breathless, no energy and no appetite. Did nothing much. The other odd thing is, I feel very emotional this week, not felt that way for a few weeks now, I thought I had that controlled. Looking on the bright side the T20 Cricket in the evening was cracking! Always good to beat Australia especially when they should have won easily :-)
Saturday 5th: A rare thing at the moment, a great nights sleep. Don't seem to be as breathless and have a bit more energy today, a good start. Not much was done today. Went back to Lance Armstrong's book, "It's not about the Bike". Seeing as I feel so emotional again I did wonder why! He was always a massive hero of mine and I don't care that he was a drugs cheat, he beat all the other drug cheats! My admiration for him is boundless especially as I have cancer now and can understand what he had to go through and what he had to face. This book is inspirational for cancer sufferers regardless of your feelings over the controversy.
Sunday 6th: Good sleep but woke with a banging head and an upset stomach, nice of my stomach to finally join the party! To be fair the day did get better though my breathlessness seemed to get worse as the day went on. Stomach eased but not great.
Monday 7th: Woke up at 09:00! Never heard of...Breathless, stomach, headache and zero energy. Nothing else to say. Not one of my better days
Tuesday 8th: Same as yesterday, what is going on with my breathing?
Wednesday 9th: Stomach kept me awake most of the night, slept from 5 till 9. Got up and pretty much the same as the last two days.
Breathlessness is easing a bit but not happy with the progress. Later in the day this got worse, walking up stairs is now a struggle, I have to stop at the top to get my breath back. I need to do something quick about this.
Had a Zoom session in the evening with friends, Michelle and Craig, to go thru Qi gong breathing exercises (funny timing) Qi gong breathing is an immune boost and many recommend this for cancer treatment. It was a major struggle, breath will not settle, heart is racing, I feel really hot and head is banging. Finished the antibiotics from last week, might as well have been Smarties for all the good they have done. Throughout this challenge I have tried to remain positive but days like these are pushing that commitment to the edge. Something is wrong and I have to change this quick!
Thursday 10th: Today is no joke, I cannot even describe how I feel, have I ever felt this ill? I had an appointment to attend for a diabetic eye test as I am now on the diabetic radar thanks to steroids. It's a baking hot late summer day and it was a 200 metre walk from the car park to the clinic and back, it nearly killed me. Went back home and grabbed some lunch then phoned the hospital. They said get here asap!
Hospital Thursday 10th - Thursday 17th
By the time I got to the hospital I was virtually double breathing just to catch my breath, I was almost getting panicky . Triaged thru quickly for blood and vitals. Oxygen level was down at 75% with increased heart rate so body stressed as well. Got seen quickly by a Doctor and transferred to the Oncology ward for monitoring overnight. Sent for a chest X ray and back to the ward. Put on Oxygen mask for the night. CT scan for my chest/ lungs booked for first thing Friday AM
Friday morning, 200mg of steroids and antibiotics for breakfast then off for CT scan. All went OK breathing is better and I'm not panicky anymore. Back to the ward and oxygen and just chill. Quiet ward and fantastic staff so I just rest up.
A member of the consultants team visits me later in the day. From the CT scan there are three options but they suspect pneumonitis which is a known side effect of immunotherapy (can also be fatal apparently!). Not the best news as, if proven it will impact my treatment going forward. More to follow. Spent the rest of the day on oxygen watching the cricket (Eng v Aus) on my phone.
Saturday morning I come off oxygen (36 hours) my level is back to a comfortable 95% and heart rate OK. Feeling so much better now. I'm being given intravenous steroids to get my lungs working quicker. The dosage is high so I guess I need it, however the weaning off process is going to be so much longer! More concern as I can have no further immunotherapy whilst on steroids.
Found out today that I am not going home for the weekend, due to the steroid levels I am on. I need to remain in for monitoring, guess I knew that but was hoping for something else...Celebrated by buying the Bournemouth v Blackburn game on my phone, £10, not bad as we'd spend that on food if we went to the game anyway. Finished Lance Armstrong's book, what a guy, amazing to even get on a bike after his cancer recovery. Stunning!
The Staff are amazing, they never stop, always cheerful and helpful, I observe from my bed, they are awesome. Working 12 hour shifts, on the go the whole time, with no drop in energy or care. There are four other guys on the ward, all further down the road than me and with their own challenges. It is eye-opening on a cancer ward and you quickly realise just how your life is evolving. You can kid yourself but in here you are hit with the full reality of cancer; this is long term, this is painful, this will most likely get a lot worse before it gets better and as I keep saying, it is horribly emotional. It's the small things that set this off and catch me out all the time and I just have to stop talking and let it pass. Probably stop caring about that soon, you're allowed a cry if you have secondary stage 4 cancer, embrace it.
Sunday, the hospital is so quiet, no visitors allowed. It is Siobhan's birthday today and I am missing afternoon tea, I can't remember not being with any of my daughters for their birthdays so disappointed not to be there. We have a Zoom call and a good laugh, great to see them all. I sit in Costa for the call, there is no one there, never seen the hospital like this. More cricket later, 2nd ODI so that will keep me going for the rest of the day. I understand that I am changing my steroids to tablets from Monday AM so in here till Tuesday at the earliest.
By Monday I'm beginning to feel like a long term resident. Another visit from the consultants team. We discuss how we move forward, I am disappointed as I was booked for cycle 4 immunotherapy this coming Friday 19th which is now cancelled UFN. I'm told that I may not need cycle 4 as it appears that the previous cycles are working away fine and doing a good job reducing tumours. Further, if the issue is pneumonitis, depending on any damage to the lungs further immunotherapy may prove dangerous, there are other ways so again, more to follow. I have been booked in for a Bronchoscopy this coming Thursday to inspect the lungs and test for pneumonitis. Due to Covid they may need me to remain in hospital till Thursday, I manage to talk them out of this on the agreement that I self isolate till then at home, no problem, agreed. Let me out I'm climbing walls now!
In my complicated new lifestyle I now have yet another issue to deal with since I arrived here. I am now on 80mg steroids a day which impacts my 'steroid induced type 2 diabetes' so up to four Metformin a day to control diabetes (and a few antibiotics thrown in) this is causing me stomach issues at night. I am waking around 4 in the morning with severe stomach cramps, it takes around 2 hours and several bathroom visits to ease, by which time I am exhausted and go back to sleep.I am fully aware this is a side effect of Metformin and immunotherapy but really, something else on the challenge list at the moment, really?
Forgot all about sleep impacting steroids, back to taking ages to fall asleep, one for when I get back home.
Tuesday morning, vitals check out OK so I'm good to go home, just waiting for my meds to be delivered then I'm off! All done by 12 then back home for two days of isolation and relaxation, perfect.
Quiet Wednesday chilling. I reviewed the Qi gong video with Michelle and Craig from last week, I cannot believe how ill I looked in the video, I was really struggling. Surprised I didn't scare them both!
Thursday 09.00 appointment for the Bronchoscopy, it's a bit of a stretch when you have a stomach that prefers to remain in the bathroom for the larger part of the morning. A bit uncomfortable. No food or drink first thing till after the procedure.... Blood Sugar at home prior to leaving is 5.2
I get seen straightway and then endure two nurses trying to unsuccessfully get a cannula in my arm, they can get a vein but keep hitting a valve so no good to get a sedative in for the procedure. They check my blood sugar and it's now down to 3.1! They gave me a tube of Glucose Gel to get the level back up which may help liven up my veins. Took five goes, my arms are covered in tape and pads, I look like a pin cushion. At one point I ask is it worth doing the procedure with out sedative, I was advised against it. Fair enough.
The procedure went OK, guess it all took about 90 minutes with recovery and a much welcome cup of tea and biscuits, didn't feel a thing. Back home and something to eat.
Felt OK throughout all of this but got home and had something to eat and felt awful, nauseous and sleepy, went upstairs and dozed the day away, had a bite in the evening and went to bed at 20.00 then slept thru till around 05.00 when my stomach woke up! I barely remember Friday, the weekend is the same, bad stomach with zero energy and a lack of enthusiasm. It is almost three weeks since I picked up a guitar or mandolin to play. I feel a bit hollowed out if that makes sense, it's all passing me by. I've not used the Gym either but to be fair, that is rather difficult when you cannot breathe!
Saturday did get me moving eventually, I stayed in bed till 11.00! A world record for me, 1/2 the day is gone!! Aislinn and Martin are coming down today and I'm doing the BBQ so better get on with it. Food and company was wonderful, sat around playing Uno (stupid game) but had fun. They went, we watched Saracens beat Leinster in the Champions Cup QF, not too bad for a zero energy day then. Sleep issues as mentioned, I just lay awake, so tired but wide awake. I checked my original steroid treatment card from June and I was on 16mg a day, I'm now on 80 mg, surprised I can sleep at all!
Sunday night I went to bed at 22.00 and my stomach woke me at 01.00 Monday morning. Started reading a good book, Peter James again, Absolute Proof, looks like that may be the way forward this week. Went back to sleep around 04.30 and woke at 08.30. Same as yesterday, zero energy and enthusiasm. I run late all day on Monday but use the time to finally update this blog for the first time in ages.
Wednesday 23rd: Went to bed at 22.00 last night and slept thru till 04.00 when I received my early morning call from my stomach. Strange thing is I feel great today. I am wide awake no aches, pains or lack of energy. Get some breakfast, cup of tea and read the paper. Decide to go over to the Gym, not been since my breathing issues and last time I went I felt so weak and wobbly I had to give up.
Smashed it! Was only going to do 20 mins easy cross trainer but felt so good I hammered it then did 15 mins hard cycling. Could have carried on but after three weeks of breathing challenges I erred on the side of caution. Amazed myself.
By 20.00 I'm hanging, all energy has now gone but had a cracking day!
With hospital visits and a very strange few weeks i've been listening to Spotify quite a bit so I'll share two playlists that have kept me going recently - both sadly passed away but both legends, one a long time ago but still missed. Thin Lizzy and Toots and the Maytals, enjoy, I did.
Focus on the positives
There are too many negatives in life
Negatives drag you under
Positives raise you up