14 Year 2 Q3
Into November then meaning that I am now into eighteen months on my trip through cancer, T2d, pneumonitis and Addisons which is a couple of months short of the Covid lockdown. Is it me or had that gone really quickly? It is also seventeen months since I retired due to the brain met diagnosis.
I'm having a very lazy day as I am just so tired after my late night rock n roll lifestyle of seeing Billy Bragg last night in Southampton. He was so good but do I feel rubbish today! All we did was go ten miles into town and sit there for a few hours and enjoy ourselves. It was worth it though. I used to keep and collect tickets for gigs and sporting events I attended, I have loads in a box somewhere, no idea why or what to do with them but I have a connection with them so they stay. Now you get the ticket sent to your phone, a Q code, that's it, how dull is that? In fairness it looks like the touts will have issues trying to get and sell tickets so it has its benefits then. They'll probably get around it somehow.
We had to show evidence of being double vaxxed prior to getting in. I'll assume that if you couldn't show any evidence then no entry. That'll teach those anti-vaxxers eh, mind you I doubt if they are big Billy Bragg fans anyway.
Yesterday morning and I have no idea what brought it on I had to listen to Ry Cooder (I really must have a Ry Cooder day soon). I've not listened to him for ages and dug out his 2011 album 'Pull Up Some Dust and Sit Down'. The killer first track 'No Bankers left Behind', his take on the 2008 global financial crash got repeated a few times, not heard it in ages so treated myself. At the end of the BB gig last night on the way out the PA played Ry Cooder No Bankers Left Behind. Coincidences eh, like I said, no idea why I dug that out yesterday. Great track.
I was booked in for my head MRI today at 17.50 but got a call this morning at 09.00 as they are short staffed they need to cancel today and re-arrange. As I am so tired today that was such a relief. There's major roadworks on the A35 Totton by pass and we'd have hit it right in the busy time. Result! They will re-arrange before the Q review later this month.
November has never been my favourite month, the clocks have just gone back, it gets dark in the middle of the afternoon and the weather is usually wet, windy and dreary. Back in the day before cancer and I was still working we used to go somewhere nice and sunny in November. So that's a thing of the past and it's my second November trapped here. It's also my birthday later this month, I'll be 65 so should be 'officially' retired but our wonderful government moved the goalposts and I have to wait another year before that happens. Glad I wont be working it 😀however I'm not sure how I feel about finally getting to what used to be the target age for working men. Considering last year, Bristol and 35 brain mets I'll have to say I am rather pleased to be getting there so cannot complain. When you get this far you never quite feel as old as your age anyway.
So to kick off my eighteenth month and the start of November I thought I'd share two poems, one that portrays the idyllic views of Autumn (sounds more like the end of September really) and the other, that of deepest darker November (from memory Rumpoles favourite poem)
It fairly obvious which is which
To Autumn
John Keats - (1795-1821)
Season of mists and mellow fruitfulness,
Close bosom-friend of the maturing sun;
Conspiring with him how to load and bless
With fruit the vines that round the thatch-eves run;
To bend with apples the moss'd cottage-trees,
And fill all fruit with ripeness to the core;
To swell the gourd, and plump the hazel shells
With a sweet kernel; to set budding more,
And still more, later flowers for the bees,
Until they think warm days will never cease,
For summer has o'er-brimm'd their clammy cells.
Who hath not seen thee oft amid thy store?
Sometimes whoever seeks abroad may find
Thee sitting careless on a granary floor,
Thy hair soft-lifted by the winnowing wind;
Or on a half-reap'd furrow sound asleep,
Drowsed with the fume of poppies, while thy hook
Spares the next swath and all its twined flowers:
And sometimes like a gleaner thou dost keep
Steady thy laden head across a brook;
Or by a cider-press, with patient look,
Thou watchest the last oozings, hours by hours.
Where are the songs of Spring? Ay, where are they?
Think not of them, thou hast thy music too,--
While barred clouds bloom the soft-dying day,
And touch the stubble-plains with rosy hue;
Then in a wailful choir the small gnats mourn
Among the river sallows, borne aloft
Or sinking as the light wind lives or dies;
And full-grown lambs loud bleat from hilly bourn;
Hedge-crickets sing; and now with treble soft
The redbreast whistles from a garden-croft,
And gathering swallows twitter in the skies.
Written September 19, 1819; first published in 1820.
This poem is in the public domain.
November
Thomas Hood (1799 - 1845)
No sun - no moon!
No morn - no noon -
No dawn - no dusk - no proper time of day -
No sky - no earthly view -
No distance looking blue -
No road - no street - no 't'other side the way' -
No end to any Row -
No indications where the Crescents go -
No top to any steeple -
No recognitions of familiar people -
No courtesies for showing 'em -
No knowing 'em -
No travelling at all - no locomotion,
No inkling of the way - no notion -
'No go' - by land or ocean -
No mail - no post -
No news from any foreign coast -
No Park - no Ring - no afternoon gentility -
No company - no nobility -
No warmth, no cheerfulness, no healthful ease,
No comfortable feel in any member -
No shade, no shine, no butterflies, no bees,
No fruits, no flowers, no leaves, no birds, -
November!
November is not that bad I know but if I listed the months in my order of preference November would be number 12 😂
November is also 'Male Health Awareness month'
This week is really not going well again. I was so tired on Monday I completely forgot about my lunchtime meds so by late afternoon I had a banging head yet again, I'm getting so many of these now. Tuesday just foggy and knackered again, Wednesday woke up with a bad head, when I got out of bed I staggered (a few of them lately as well) and spent a very light headed dizzy day feeling odd with a borderline headache. Thursday now and still the same. Not sure where I go with this. Too many meds and fatigue with everything else as well. Is this my new normal default state?
Wednesday was supposed to be CT Scan day but again I received a phone call first thing in the morning cancelling. Apparently the CT Scanners at the RHS is out of action. The week seems wasted, my busy week is suddenly very quiet.
Earlier this year we started watching Greys Anatomy on Prime. Someone on Melanoma-mates recommended series five as one of the staff was diagnosed with secondary stage 4 Melanoma due to brain mets. As you can imagine I was interested so rather than starting at season one we dived straight into series five. This is a really good programme from my point of view as they discuss things like Melanoma and Adrenal insufficiency. Anyway, point being that we got hooked, completed S5 and went back to the start then kept going. Almost finished S11 now, I checked on Wikipedia and we have now watched a total of 243 episodes covering a ten year period of the programme. Binge watching or what! It is very good, well I like it!
Today I received my annual T2d checks from the GP. Blood tests (I need three tests this month now), urine tests and blood pressure tests. I have been pushing for these as I would like my BP and Cholesterol checked. I'm not concerned but the Keto diet is high fat low carb so I have been treating myself to as much butter as I can which is very nice of course but a sanity check on this just to make sure I'm on track is overdue. 30 weeks on this diet and a lot of butter has been consumed. We'll see.
It was cold this week and we had to go out, not far just up to the village so I got my winter jacket out, I feel the cold now as well. Never used to! The last time I wore the jacket I was 36 lbs heavier. Now I look like a little old man in a jacket way too big for him which I guess is exactly what I am now, oh well.
Yesterday I had my CT scan in preparation for the Q review later this month.
I am struggling to remember how many CTs and MRIs I've had since May 2020 but I must be heading towards somewhere in the region of twenty + now. The reason I am trying to remember is that yesterday was the first time I have had a reaction to the contrast.
It has never impacted me at all previously (well OK once but that was my fault for neglecting to flush with water post scan and that impact was the next day).
When the contrast was administered my arm went cold, very cold, then the usual feeling of needing to go to the bathroom was intense, next my head became seriously hot and prickly. It calmed down by the time the scan had finished so I didn't mention it. I know, don't ask me why.
By the time I got home blister like spots appeared on my arm, neck and head. I drank bundles of water to flush it through and the spots disappeared so panic over. I kept on drinking water but later the foggy headaches descended. I went to bed but woke about 03.00 with a banging head and felt dog rough. Took a wafer and then thankfully went back to sleep till 07.30. Today is the now usual foggy head lethargic day. Should be used to them really.
I am wondering why this has happened after so many before were event free. I've had my third booster and flu jab recently so maybe they're bouncing around my system, who knows?
I'm also wondering if maybe I should be taking extra steroids before scans as I need to beware of any additional stress or impact on my body because of Addison's. I have no idea but I do have my head MRI this week with contrast again so I'd better let the team know. It was very uncomfortable so I'd like to avoid if possible.
I just had to Google it this morning for any information, like 'is it dangerous'? So, I found out that it's called Gadolinium (I did know that) and there are a few known side effects. I came across this little nugget 'Gadolinium may remain in the body for months or years' , maybe after almost twenty odd contrasts in eighteen months my body is full up 😊 It can be dangerous for patients with Kidney issues,
I found these listed
Toxicity is a side effect of GBCAs that can occur within hours after undergoing an MRI scan with one of these contrast agents. Or it can manifest years later in people who have gadolinium buildup in their bodies.
Symptoms vary from person to person. The severity ranges from mild to severe.
Symptoms include:
- Pain in the bones or joints
- Burning or “pins and needle” sensations in the skin
- Brain fog
- Headache
- Vision or hearing changes
- Changes to the skin, such as thickening or discoloration
- Nausea, vomiting, or diarrhoea
- Difficulty breathing
- Flu-like symptoms
- Metallic taste
https://www.drugwatch.com/gadolinium/side-effects/
So three out of the list applied to me yesterday.
- Burning or “pins and needle” sensations in the skin
- Brain fog
- Headache
Two of those apply to me in varying degrees any day of the week to be honest! The burning bit was intense to be honest though.
I'll stop looking now before I get concerned. I'll let the team know for the MRI and see what happens. I have no complaints about the contrast as it has in reality saved my life. I must try to remember how many times I have received the contrast since diagnosis.
Blood test for my Endocrinology review on Friday booked for tomorrow. I need to get over the point of just how rubbish I continuously feel to the Endo Doctor, my issues have been getting incrementally worse over the last three months and I'm getting to the point now that I dread the evenings as the headaches start descending with the fatigue around 5ish almost everyday. Last night I took an extra prednisolone as it descended but it didn't stop the bad head later on, I was really tired going to bed around 22.45 and I was still awake at 03.00 this morning. I woke at 08.00 feeling rubbish again but needed to get up to sort things out, the guys in the band are coming around today. Feeling wide awake for that!
Well the rehearsal was really good, they all came here for 13.00 and had three hours playing. We almost back to how good we were two years ago! Our last gig was in November 2019, we had a winter break then Covid hit in Feb 2020 and in May I was diagnosed. It has just flown by since. Anyway, a great session and progress, it was fun. Now 17.15 and my head has started again. Fed up does not describe this.
Busy day today (well, busy for me) 07.45 appointment for my head MRI followed by 10.45 call with the Endocrinology Doctor.
Up early and off to the hospital, no traffic (where is everyone?) so got there early. Had a chat with the nurse about my reaction to the contrast on the CT scan last Sunday. She tells me that it a different contrast for the MRI but recommends that I remember to notify the team at my next CT scan which will be February next year. The reactions I had are fairly standard, nothing out of the ordinary so nothing to be too concerned about. The scan went well, I like MRIs. I always enjoy the bit where you can see them all through the mirror in the mask in the control room, stop whatever they are doing to crowd around the monitor look up at you and start pointing to things on the monitor. A great way to relax you when you are getting your brain scanned. Two weeks scanxiety coming up.
It was a good call with Endocrinology. The Doctor is OK with my current dosage of steroids, if it helps with my symptoms then so be it. The only caveat is that as I have steroid induced T2d then extra steroids will impact my blood sugar levels. I have a slight concern that when I increase dosage it helps for a week or so then I get issues again so does my body adjusts to the new level. The answer is it shouldn't really so maybe something else is going on. I mentioned that at my last Oncology review I was told that they had not received the update from the last endocrine review. She checked the dates and said the update was sent on 7th September so too late for that review but should be available to discuss in two weeks.
We discussed my impacts and concerns about the constant battle with fatigue but more importantly headaches. Endocrinology state that I need only 7.5 mg a day steroids so anything else is Oncology, Oncology state that if I need extra it is an Endocrinology issue. This is where I am which is frustrating. She agrees and will refer me to Neurology (where this all started!) for a consultation. For me this is a good move although a bit on the scary side but if there is something going on It would be preferable if resolved asap.
I have a form to complete for the local ambulance service in the event of an Adrenal Crisis so I need to send over for the Doctor to complete.
Final point is my Testosterone level has not increased much after a few months so she suggests that I apply three time a day not two.
That was a really good meeting and made me feel so much better. First positivity in ages on this issue 😀
We watched 'The Great Rickshaw Relay Challenge' for BBC Children in Need last night
The Rickshaw Challenge for BBC Children in Need is back with an exciting new twist for 2021 in this one-off special.
As the challenge enters its eleventh year, Matt Baker and a team of five young people, all of whom have been supported by projects funded by BBC Children in Need, take on a relay-style ride through their hometowns and other places across the UK that hold a particular significance for them.
The programme also celebrates the history of this much-loved BBC Children in Need staple, while at the same time raising life-changing money for the charity as part of its 2021 Appeal.
The five young people involved are just so amazing and positive. How they cope with what life has thrown at them is a lesson and example to us all. I admire each and everyone of them so much.
My favourite quote from the program.
"I don't have a disability, I have different abilities!"
It makes the rubbish I'm dealing with at the moment seem more than trivial.
I get very emotional watching programs like this, I never used to 😭
Cancer wrecks your emotions
Watch it, you wont be disappointed.
A Friend on Melanomamates posted a comment about how Cancer wrecks your emotions, how the slightest thing can come out of nowhere and bring tears to your eyes. I get this all the time, absolutely wrecks me.
BBC Children in Need - the Rickshaw Challenge, Rose on Strictly, virtually any episode of Greys Anatomy, watching the news and seeing the poor refugees stuck on the Belarus / Polish boarder with their families in freezing weather facing off to armed soldiers, or the desperate asylum seekers in dinghies in the freezing cold channel just looking for a safe life for their families, dear Lord what have we become? Kevin Sinfield doing his amazing runs for his best mate Rob Burrow, I can't even watch now. Or just me trying to play John Prine's 'Summers End' (one of the last songs he wrote) on guitar and not making it past the second verse! Listening to Justin Townes Earle who passed away at the ridiculously young age of 38 last year. The list is endless, just endless. Anything cracks me up now.
We went out for a meal on Sunday to a very nice restaurant that we had not been to for a few years. Unfortunately it has changed hands and whilst the food was OK the service and ambience provided endless fun, pure comedy value. We wont be going back.
My point being that I over indulged on carbs for the first time in ages. It is now Tuesday and I'm still fighting an angry acid stomach. To add to this I could not sleep last night, wide awake till around 02.30. Todays is not going well but as I always say, at least I don't have to go to work 😃
I had the results of my blood test for Endocrinology last week and disappointed that my HbA1c has crept up again to be right on the cusp of going back into the red. I have worked so hard to keep this down and given up eating all the things I like, it had been going so well.
In fairness the Endocrinology Doctor was not in the slightest concerned about this, she stated that it is within the green range so what is the problem. It may be linked to my increase in steroids. Interesting though as my twice daily blood sugar readings appear to be all over the place recently, loads of odd readings. Sleep patterns are really odd lately as well. Something is going on?
Sleep and bad heads are really poor this week, woken last night at 01.30 with a banging head, took ages to finally clear and no further sleep, I had a 09.00 appointment for a blood test at the local surgery so made sure I got up, showered and ready to go. Came home and managed two hours sleep but another foggy head day. This evening I have manifestations in my eyes again, really active and worst for some time. This week is not enjoyable.
From the Melanoma UK Website for International Mens Day 19/11/2021
Click on the picture to link to information on MALE SKIN CANCER and while you are there maybe visit the Melanoma UK shop or even make a kind donation to support Melanoma UK 😃
This photo came up on my timeline this week from 23rd November 2008, I was two days out of hospital after getting my primary melanoma fully removed. It was a largish mole to the left of the top of my ear which had previously been removed but they wanted even more skin for a biopsy to determine if the melanoma had spread deeper. Additionally they removed lymph nodes for further testing which is the scar along the jaw line.
I don't remember much about it apart from I had no appetite for the entire weekend.
They had given me a weekends supply of Tramadol which was very nice for the pain management. On Monday when the dose had worn off I rang my GP surgery to request more and got a rather long lecture about the dangers of dependancy on Tramadol and was told that it would leave me 'spaced out'. Now I may be wrong but I thought that was the point of it 🤷♂️
Anyway it was rather painful when the Tramadol wore off.
Both biopsy's and blood tests were clear and after four years of skin checks and a move to Hampshire I sort of fell off the radar and gradually forgot all about it! Entirely my fault of course.
Just goes to show eh 😒 Still just as well it's only skin cancer eh.
I found another Autumn poem, there appears to be loads of them!
Autumn
John Clare
I love the fitfull gusts that shakes
The casement all the day
And from the mossy elm tree takes
The faded leaf away
Twirling it by the window-pane
With thousand others down the lane
I love to see the shaking twig
Dance till the shut of eve
The sparrow on the cottage rig
Whose chirp would make believe
That spring was just now flirting by
In summers lap with flowers to lie
I love to see the cottage smoke
Curl upwards through the naked trees
The pigeons nestled round the coat
On dull November days like these
The cock upon the dung-hill crowing
The mill sails on the heath a-going
The feather from the ravens breast
Falls on the stubble lea
The acorns near the old crows nest
Fall pattering down the tree
The grunting pigs that wait for all
Scramble and hurry where they fall
From Read Me 2: A Poem For Every Day of the Year
https://www.panmacmillan.com/blogs/literary/poems-poetry-about-for-autumn-keats-frost-classic
https://www.theguardian.com/books/2012/oct/29/poem-of-the-week-john-clare
It's been a very strange month of appointments, they were all rearranged which takes a bit of messing around as Annette has to take time off to drive me to the hospital. I was supposed to have my quarterly review with the Oncology consultant today but now have to wait till next week to end my scanxiety for another quarter.
I had been waiting for an appointment for Dermatology to check all the weird moles on my skin etc. Last Friday I received a letter telling me that the appointment was cancelled as it was no longer required! I had only been waiting all year for the appointment which was confirmed finally in August. So spent most of the morning on the phone which I wont go into but eventually I got a meeting on the original date just at the end of the day. Anyway, good news as all checked out OK, he had lots to check over but no concerns with anything so all is fine!
So good progress with two meetings so far, just need further results next week for a perfect month.
Fatigue and bad heads are fairly constant now but as time goes on I think I'm just getting used to it all. Sleep patterns are still rubbish but every now and again I do manage eight hours. Rare and very nice when it happens. Mind you I still wake up knackered 🤣
My concern at the moment is my blood sugar levels. I check twice daily, mornings and evenings but I have been in the red all week which makes no sense to me at all. I had a second blood test last week and my HbA1c has gone into the red as well, only just at 42 but it's over nonetheless. It was only 31 last January and I was not on a carb free diet then either. 33 weeks into the Keto diet and my blood sugars increase. I have a follow up meeting with the Diabetes Nurse at the GP surgery next week so will discuss then.
The hospital appointment with Oncology has now changed to a telephone call not F2F, disappointing but may be Covid related. To be fair after last weeks Dermatology appointment I am glad not to have to spend anymore time in crowded hospital waiting rooms than is necessary.
Not to be taken seriously of course, it just made me smile 😆
The call with Oncology was booked for 16.40, at 17.00 we got a call from the hospital asking where we were as they were expecting us to come in 😱😡 Believe it or not. Apparently there was an error and a few letters were sent out with incorrect details. It is now rearranged again for tomorrow. It's now been three weeks since my MRI so I'm guessing that there is nothing serious (hopefully). I'd hate to think there is.
I had my follow ups with the Diabetes nurse and GP after my yearly T2d tests.
Nurse was all OK, no issues and carry on doing the same. No issues with my HbA1c as it is only borderline pre diabetes but obviously continue to monitor
My GP was again concerned about my Cholesterol even though my Cholesterol/HDL ratio is down from 5 last year to a far more respectable 3.1. The devil is in the detail as usual.
My LDL (Bad) Cholesterol Level has gone up to 5.7 but my (good) HDL cholesterol has also gone up to 1.83 giving me the 3.1 ratio. Because of my age, LDL level and with T2d this puts me on the risk register so again she has suggested that I start taking Statins. This time I gave in, if it helps me then so be it. In fairness she is looking out for me so what complaints could I have with that? Long may it continue. What's the problem is another med to add to my collection.
I do have a slight worry with Cholesterol as I'm on the high fat low carb Keto diet (especially as I can have as much butter as I like) but all seems good. She has scheduled a further blood test in three months to see if the statins are causing any issues. We'll see how that goes.
Today was not a great day
Finally made it to my 3 month review at the third attempt and fully expecting NED. As we all know, you don't always get what you expect.
When they'd called on Monday to ask where we were as we should have been at the hospital not at home waiting for a telephone conference, Annette suggested that we hold the meeting over the phone. The response was 'we'd prefer to do this face to face'. I guess that was the clue then.
There is good news as there's no evidence of any further brain mets so all looks good there and to be fair brain mets are very very scary so glad that one seems to be under control now.
The bad news is that they have picked up new tumours, this time in my Pancreas. The tumours on my Adrenal gland are growing, I had assumed they were long gone, apparently not.
So, more treatment then.
Due to my reaction to ipi/nivo Immunotherapy that line of treatment is deemed way too much of a risk so not possible. The decision this time is targeted therapy drugs, Encorafenib and Binimetinib
The treatment will start immediately and I also need to have an Ultrasound on my heart as they need to monitor my heart and bloods throughout the treatment.
The list of side effects appears to be almost endless and I will be on the meds for three months. Then a review to see where we are and if surgery is required. Hopefully not.
One caveat, the doctor stated that they could not confirm if the tumours were Melanoma or not as it would take a biopsy to confirm and the preference is to avoid unless necessary. I have no idea what this means🤷♂️. We came out of the meeting a little bit in shock as we did not see that coming, there was also a bit of information overload which never really works when you have just been given thoroughly unexpected bad news. Just confused and disappointed.
Well it all appears to have gone wrong again. I need to clam down as I'm only nineteen months into this journey. I know many who've been fighting this for much much longer.
Moving on, I started the Statins that evening and later on the headache crept up on me. The same thing on Friday, I'm not liking this.
I received a call on Friday from the hospital confirming that I have been booked for an Ultrasound on my heart for the following morning at 09.00. Impressive! Later that evening a bad head yet again. Went to bed around 22.30 and set the alarm for 07.00 in the morning then lay there wide awake till sometime after 04.30, I could not sleep, way too many thoughts banging around my head
Ultrasound went well, very relaxing and I managed to stay awake even with the Eagles playing in the background 😆 Appears not to be any issues and looks like I'll have a few of these over the coming months. Got back home and went to bed for the morning
Saturday night I had possibly my worst ever migraine, it went half way down the left side of my head with full on sensitivity to light, sound and smell. It was awful, took two wafers which did nothing. Finally got some sleep and spent Sunday floating, doing absolutely bugger all. Sunday evening the head started again so decided to stop the Statins and see what happens with the bad heads and migraines. I do not need this going into the new enco/bini combo. One of the main side effects listed is headaches, I seriously cannot do a double dose of side effects.
I was expecting my new meds to turn up on Monday but no sign of them. The Oncology Nurse rang on Tuesday to check in and see if I'd received my Meds and was disappointed that I hadn't, She'll follow up for me. The call reminded me that I'm back on the radar of the Acute Oncology team so got my crash bag sorted for any emergency hospital visits, I did think that was behind me. Oh well.
The Meds arrived Wednesday morning, forever now known as enco/bini. So 3 x bini @ 07.00, 6 x enco @ lunchtime (they're BIG, I think they will be all I need for lunch 😀) then 3 x bini @19.00. For three months, that is a lot of tabs on top of Steroids, Metformin etc.
Started enco/bini on Thursday 9th December.
Melanoma, the gift that keeps on giving
I'm not going to go through a daily list of issues like I did for Immunotherapy, not sure if there is a need to but I will include any highlights. I'm now into my second week of my new Meds regime and waiting for something major to happen so a bit like cycle one Immunotherapy without the itching. The only change so far is that every time I sit down I fall asleep. No matter what the time is, I fall asleep when I sit down. The other day after almost ten hours in bed fast asleep, I got up, had a coffee and sat down to watch the cricket and dozed off for a further hour snooze. I'll have to assume that this is normal and the bodies way of dealing with the amount of meds I now take on top of my usual cocktail. My challenge is the sheer fatigue when I am awake to the point that I cannot be bothered to do anything, literally everything is a struggle. I've had a few evening bad heads thrown in but nothing new there really. I was tired before but this is miles worse.
I had my first catch up with Oncology today since I've been on the new meds. Nothing to report really, bloods are fine and with the exception of fatigue not much in the way of side effects. Going forward we'll have monthly checkpoints on the progress with the meds with no change to the quarterly scans and reviews.
Christmas went very well, so lovely especially after last year. We had a full house of eleven for the day, not much scope for a quick snooze then.
One highlight with the new meds, and is listed as a side effect, is nausea. This only happens later in the day, to the point that I cannot even bear the smell of food cooking. I have just been having light meals in the evening. This is even worse if I have a headache where the smell of food becomes unbearable.
I guess that it is something I just have to get over.
One bad thing about Christmas is that there is way too much temptation for one to suffer on a Keto diet. Normally easy to ignore as we don't have any temptations in the house. This time of year there's cakes, mince pies, stollen, chocolates and bread. Bread is my achilles heel on this diet (I thought it would be chocolate) so we've stretched it till new years day, and did not go mad. Very naughty though.
End of year again so my favourite CDs from the last twelve months
Going into 2022 I'm not as positive as I was hoping to be and it is hard to be positive when new tumours are discovered and not where you were expecting them. It is always a worry with Melanoma that the tumours start popping up in other places. Still next month is Q review month so more scans and tests. It will be good to get through the review to see if there is any progress with the pancreas. That will calm me down somewhat. It's just a bit of an unknown at present. I had got myself all comfortable in my little world of brain mets and Addisons so it did come as a shock.
I had my consult with Neurology today. This went really well and I came out with a far more positive mood that I went in with. In my long history of migraines and bad heads I have never been given quality time to discuss my issues in detail, it has always been the standard ten minute GP appointment without too much resolution. I wish I'd have been offered this type of meeting years ago. I guess having cancer allows you better access! The meeting lasted an hour and we discussed my history fully along with symptoms, types of migraines/ headaches, issues caused and time to recover.
There will be a letter to my GP following the meeting and surprise surprise, yet more meds but if they relieve the migraines and bad heads then bring it on. I have been trying CBD oil as well, this works OK on bad heads but as with the rest of the options available, they don't touch the sides of a migraine. They were good for the bad heads to be fair. Weirdly they do not get rid of the headache, it's still there but the pain eases and becomes bearable.
My challenge this month is the constant fatigue I face. This has changed, now by late afternoon I can literally feel the energy drain out of me. My energy reserves seem incredibly small now, anything too physical will drain me almost immediately. It was poor prior to my new meds regime but now it is just plain awful.
To add to my woes I have also managed a calf strain in my right leg which is restricting my mobility but is probably a good thing so I have been avoiding the gym. This is all annoying me no end as I am trying to maintain a level of fitness and something always gets in the way.
In the back of my mind I still have a slight concern with my Cholesterol and the high fat keto diet. I have no idea why I did this but I decided to take statins again after we'd got into the new year and everything got back to normal. Three days after I started taking them I had another migraine. This one lasted from Thursday evening till Sunday morning. The same impacts as last time, down the left side of my head, sensitive to light, sound and smells and so painful it was almost impossible to sleep. Once it cleared I spent the next two days in a head fog. I stopped taking the statins immediately and have no plans to go back. I spoke to my GP to make her aware and my reasons. It turns out that she had not been updated by the Hospital of the new tumours and the medication I'm on. She agreed that my main concern is cancer recovery so no issues with stopping the statins.
I had my second monthly update with Oncology to check on my progress with the new meds. This time it's not so good. I've been having bi-weekly blood tests and the one from 12th January and picked up and problem with my Renal Function so my Kidneys or more precisely, Urea and Creatinine. Both of which had been more or less stable (for a while at least) but this is an indication that the drug dosage may need to be altered. I had another blood test on the 19th to see if there is any change in a week. Updates shortly.
In the course of the discussion I asked a question I had been avoiding since the meeting telling me that the tumours had spread to my Pancreas. I asked 'how serious is this'? I am not sure I want to hear the answer. So it turns out that it is serious if the new meds fail to work, then we have a problem. So 'what are our options should this happen'? Not great it seems, Chemotherapy with it brutal side effects and failing that it will be clinical trails or alternative/experimental therapies. Well, let's hope we don't get that far. In fairness, the Oncology team feel that this will work and we may just need to change the dosage.
At the end of the meeting I mentioned about Statins and my migraines, the doctor checked this out and got back to me saying that there is no way I should be taking my cancer meds with Statins. Whatever the mix is it is not good! No longer a problem that one..
I guess neither of the above look too good do they?
The mess in the middle is when I was on Immunotherapy followed by Pneumonitis. Hoping for better results this week
Prior to cancer I took no daily medication of any kind and did my best to avoid it. I used to see people in the local Chemist getting carrier bags full of meds and remember thinking I hope that never happens to me. Well, now it has, I get two carrier bags every couple of weeks, one from the local Chemist and one from the Hospital with my cancer meds. The picture opposite is the weekly allocation and dispensing of the meds at home. Two years ago there was nothing.
Still, it's nice to be looked after and my team are looking after me.
What more could you possibly ask for?
I have started to get my quarterly appointments thru today for February which reminds me that Y2Q3 is coming to an end and the next quarter will take me up to my second cancerversary and year three of my journey. I will forever remember going into a meeting with Neurology in June 2020 after my operation thinking I had only one small brain tumour to deal with and I'll be back at work soon. Well I got that one wrong I guess.
The two years have gone by so very fast!