12 Year 2 Q1
It's almost the end of May so I've been lazy again updating. This is mainly due to ongoing fatigue, It's tough at the moment, a real challenge. However, it's not like I have to go to work so it aint too bad! Also getting evening headaches again, some OK, some not so OK.
I had a call with the Endocrinology nurse on the 11th May. We have agreed that the fatigue and headaches are probably a result of reducing the steroids too quickly, from now on we'll reduce every two weeks minimum and monitor. The plan is to get to 7.5 mg a day on prednisolone and get this steady then change back to hydrocortisone. Forever.
We discussed the emergency hydrocortisone procedure and I have now taken receipt of my emergency pack which I should carry with me at all times. Two syringes and needles with hydrocortisone vials to mix in the event of an emergency.
Addisons disease, just another new thing to get use to.
I posted this on FB for my Cancerversary on the 15th May
As May is Skin Cancer Awareness month I thought i'd share this with you:
I was initially diagnosed with Melanoma in 2008 due to a mole on the side of my head. A short time later I was discussing this with a work colleague and he asked me if I was concerned; I said 'of course I am, it's cancer' to which he replied 'yeah but it's only skin cancer, it's not like you haven't got loads of it!' After two operations to remove the tumour, surrounding skin and lymph nodes for a biopsy, then skin checks for a further four years, I was eventually given the all clear.
On the 15th May last year I was diagnosed with two brain tumours, one large, one small. Brain surgery was required to remove the larger of the two in June which went very well. The biopsy confirmed tumours were secondary stage 4 Melanoma (Metastatic Malignant Melanoma in the Brain) The follow up MRI located eleven further brain tumours (metastases) and I was referred for Gamma Knife treatment and Immunotherapy. The MRI prior to Gamma Knife in July located a total of thirty five brain metastases (too many for treatment) so this was cancelled.
My treatment also included long term steroid use which caused Type 2 Diabetes. After three sessions of Immunotherapy (ipi/ nivo) I contracted Pneumonitis (a known side effect) so further Immunotherapy was cancelled. However, subsequent MRIs show that the tumours are continuing to respond to the Immunotherapy and are shrinking. I was put back on high dose steroids, and when weaning off, it was discovered I have a tumour on the Adrenal gland. This has now been confirmed as Addisons disease, meaning I will remain on steroids for life. Oh, and the fatigue of course, monster fatigue!
To be fair, I'm doing OK.
Still, I'm so glad 'it's only skin cancer'.
May is Skin Cancer Awareness month
Lots of nice comments, I should use FB more often I guess
The quarterly Oncology review on the 20th went well to a point. It was face to face in hospital and made a nice change to meet the consultant rather than another Zoom.
The brain mets are still responding to treatment and no new ones so good news. One issue from the CT scan, my Pancreas has shrunk by 7mm in the three months since the last scan, which is a concern. I have been scheduled for a MRI on it to determine if there is an issue. Hopefully not as I really would prefer not to add to my list. We have a follow up booked for the 1st July, there is a six week waiting list for the MRI. I have no concern with this until told otherwise.
I am now seven weeks into my Keto diet and all is good, I am quite enjoying it. I've lost all my chocolate cravings which is rather surprising. To be fair I had reduced my intake prior to the start (apart from Easter obviously!). No bread, potatoes, breakfast cereals, sugar or carbs. I like the diet, it is easy to follow so may well stay on this for the foreseeable future. It's somewhat difficult to monitor how I feel as I am permanently fatigued but I can see that I'm losing weight which is positive. I will weight myself in two weeks. Looking forward to that.
At the end of May/ start of June I seem to be stuck in a circle of fatigue and bad headaches again. I wake during the night with a banging head, take some meds which take ages to work the eventually go back to sleep then miss half the morning and drag myself around the house doing nothing in particular.
I have been on 10mg of prednisolone for almost three weeks now, at the start and for over a week there was no impact so I was beginning to think I'd cracked it. The last week has gone pear shaped on that thought. However, I am determined NOT to increase my dosage and hopefully reduce asap. I want to ride this out so will stick with it, it cannot stay like this forever.
I am forcing myself to get up earlier and go to the gym for 45 mins and go for a local walk as well later trying to get back on track for 10,000 steps a day. Today is 1st June and I have managed it for the last three days so will keep this up daily unless I feel really ill.
I had considered entering a Macmillian Cancer walk in September, a 13 mile hike along the Dorset Jurassic coast. 13 Miles used to be a doddle but now is very much a stretch. I had delayed registering to see how I feel so after todays walk I decided to go for it as it will give me something to aim for. Logged on and it has sold out believe it or not. Two days ago I could have got a place easily. I'm now on the waiting list.
It's 2nd week of June and the fatigue is becoming unbearable. I spent the weekend doing nothing, absolutely nothing at all. Sunday night I slept for almost nine hours straight after a weekend of dragging my butt around the house. This has been getting incrementally worse over the last week or so. I know I said I did not want to increase my dosage but I'm so fed up with this I took 11 mg this morning. Just the one mg extra to see if it makes a difference. I do not want to stay on this so just for today.
Having said that, I checked my Fitbit stats for last week and I'm not surprised I'm fatigued, I probably need to clam down but I did enjoy last week 😁
We joined a local walking group and had our first meet with them today as well so needed a bit more energy. We ended up walking 5.13 miles which is a bit of a step up but I do need to stretch my self so all going well.
I felt weary but not fatigued after the walk, so I guess the extra 1 mg did the trick. it was a lovely morning for a wander around the New Forest and I thoroughly enjoyed myself.
One thing that I had forgotten about when upping my steroid dose is I cannot sleep well for a few nights, it takes ages to get to sleep. I'd been reducing for so long this had clean slipped my mind. So definitely not repeating unless in an emergency.
It is getting hot now as well for my morning walks especially as I now need full coverage including a hat (I now have three!). Bought new lightweight walking trousers, four long sleeved T shirts and three pairs of UPF Arm Sleeves. I'm well wrapped up and it's hot, just another thing to get used to.
I got confirmation today for my pancreas MRI, Friday 18th June, perfect 😁
Carrying on with the morning walks, averaging 4-5 miles a day, struggling with fatigue later in the day but that's nothing new anyway so onward regardless. If Annette is not working she will join me but if I'm on my own I'll listen to an audio book which is a rather relaxing way to walk.
I've only got 26 hours 20 minutes left in my current book so should keep me going for a while at least
Todays walk in the New Forest, not as sunny today but still very humid ⬇️
It's coming up to my first anniversary of my brain surgery on June 15th, only one month after being diagnosed which seems so quick looking back now.
I did say that I'd do a weight comparison as I was a ridiculous 16 st 1 at the time (slightly over 102 kg).
I guess the biggest challenge was that I'd been on steroids for nearly 13 months and the appetite cravings that go with it therefore the weight was piling on.
In fairness the T2D wake up call helped me to manage my weight and the Keto diet has driven down my weight even further and is manageable so I will continue, it is almost a lifestyle choice now,
So my new trimmed down weight is 13 st 7 or 85.7 kg which is great apart from virtually all of my trousers, jeans and shorts being way too big for me. We went to a friends wedding last Saturday and had to rush out on Friday to buy a new pair of trousers. The trousers that I was going to wear (only worn once for a wedding two years ago) fell around my ankles when I put them on.
So I've lost weight, lost any colour from the sun, obviously and all my hair is lighter but most importantly of all, I'm still here, still smiling but knackered, It's been a very tough year.
The T shirt is an authentic Grateful Dead shirt I bought in Haight-Ashbury in San Francisco and Annette would like it pointed out that I haven't been wearing it all year. I put it on just for the photo 😀
I called the Endocrinology team last week to discuss my steroid reduction as I am just so fatigued which additionally causes the headaches which are annoying me again.
I got a call back a few days later and a slightly different message this time. The suggestion is not to be in so much of a hurry to reduce the dosage. Yes the body needs 7.5 mg a day to make up for the loss from the Adrenal Gland but I am fighting cancer and the side effects of treatment so the rest is needed. It was suggested that I go back to 15mg a day but I said i'll increase to 11 mg and monitor. Not that I feel much better but it is so hot over the last week or so that everyone is struggling with the heat so i'll stick with this for a while longer.
Today is a year since my brain surgery to remove the 3cm tumour impacting my left side and eye so another reflective day.
As if to commemorate it my left eye manifestations have returned today, they are always there thanks to the scar tissue but today they are back with a vengeance.
It is hard to explain just how terrifying brain surgery is and then how relieved I was when I came around after the operation. I remember the recovery room being very calm with music in the background. I was laying there moving all my limbs one at a time thinking yep, that still works OK. The nurse looking after me asked if how I was feeling and I croaked an answer. He asked me if I remembered his name as he told me when I first woke up?? No idea, I don't remember that.
Brain surgery still amazes me. How talented are those surgeons!
Macmillian have added an extra date for the Dorset Jurassic coast, September 5th so I have signed up! Ten weeks or so to get match fit, I better get on with it. I have to get some sponsorship as well 😱
Had my Pancreas MRI yesterday, it was the longest MRI I have had so far, just under one hour, constant breathing in and out then holding your breathe for 10 seconds. I find MRIs so relaxing now, this is my ninth so far but all the other have been on my head. I'm sure I dozed off for a few minutes. I had the usual contrast infusion but this time they added one to slow my stomach and internal bits from working too much to allow a good internal view. This worked fine until my stomach woke up with a vengeance just before I was going to bed, ouch. No more detail required but it was about one hour later before I finally made it to bed. Stomach is still not happy today!
Did I mention before, how wonderful the NHS is and how lovely and caring all NHS staff are? They never cease to amaze and impress me.
Here's my new emergency hydrocortisone injection pack to be carried when away from home in case of steroid shock.
A year ago I'd never even heard of any of that, all new to me and part of my continuous learning curve, will it ever end?
Hopefully I will never have to use this.
We had a week away in Dorset at West Bay as part of my training for the walk in September, six days of yomping around the hills and coastal paths around West Bay. Whatever happens or how I feel you just have to enjoy the views, Dorset is a stunningly beautiful county.
Over the six days we managed to walk just over 100k (62 miles) with the hardest day, West Bay to Golden Cap (the highest point on the Dorset coast) and back, 14km with 550 metres of climbing, it was tough and involved loads of breaks and rests but what a great walk. I couldn't do it everyday tho, had an easy day after that. We also had a rest day and met up with our Swanage friends Sue and Roger for a relaxing day in Lyme Regis which was topped off with a visit to the Lyme Regis Brewery to discover they also brew Rhubarb Cider so we stopped for a pint and Annette very kindly bought me a four pint flagon for refreshment in the next few days after a hard days yomping, very much appreciated as well.
To be honest, the week has taken its toll on me and back home again I've had a rather non productive week and struggled thru it, lacking energy and enthusiasm. It has highlighted that I really need to get this together if I'm going to be ready for September. I have managed to make it thru this week without doing very much at all, definitely not the way forward.
To add more confusion to the week I had a follow up on the results of the MRI on my Pancreas and not the best meeting I've had. The video call started seventy minutes late and I was on a tight schedule anyway, so be it.
It appears that there is evidence of tumours on my Pancreas but again it seems that the Immunotherapy has taken care of them. There are concerns that the bile ducts may be impacted although there is no evidence of any symptoms yet. I am now been referred to the Biliary team for a follow up. To tell the truth it all seemed a bit on the vague side, we'll see. It is another one for the list and I'm beginning to wonder where this will end. I used to worry about the scans in case they picked up any further brain mets now they seem to find them all over vital organs, even more reasons to make MRIs and CTs even more scary. It is amazing what one little mole on the side of your head can cause down the line so many issues years later
I have started a 'Just Giving' page for the walk and set a target of £950, after two days I am up to £922 which is amazing, loads of lovely messages and support. My Daughters are helping me to set up a another page for Melanoma UK
I've been listening to Billy Bragg since 1983, almost 40 years now he's been at it. The boy done good!
This is a great set covering BBC sessions from 1982 to 2019. All live in the studio, passionate and raw. Something sorely lacking in music lately.
Unusually for me I tend to focus more on his lyrics rather than the instruments, I love his lyrics, very original, very funny and we share the same politics.
Billy Bragg is not appreciated as much as he should be, he's a national treasure. We've got tickets to see him in October, looking forward to that already.
Anyway, this collection comes highly recommended, a great way to spend almost two hours.
Seeing as how I have been struggling with my energy levels and motivation this week I've been listening to Billy probably way too much 😀 Thoroughly enjoying myself.
We are now in July, how quickly is this year flying by? I was reminded during the consultation that my quarterly scans and review are due next month. Now there's something else to look forward to eh 😱
Heading rapidly towards the end of July, why do the summer months go by so quickly? Still around another eight weeks till the Autumn Solstice so plenty more summer days to come, let's enjoy them.
I'm still in limbo waiting for something, no idea what that should be. I have no updates, still on 11 mg of prednisolone, still getting headaches and fatigue but in reality nothing else. The issue with the Pancreas has not progressed, I have no symptoms as previously discussed and the Biliary team are yet to contact me so I guess it's not that urgent is it?
I have a call with the Endocrinology team on Friday to discuss progress (there is none) so we'll see how that goes, should be interesting.
Scans are booked for August so MRI on the 5th and CT on the 15th with a follow up consultation on 26th, F2F again. Things are getting back to normal it seems.
Speaking of which. Normality, guessing for me that has changed anyway but it is time to go back to a few things, just be careful. At the start of July we returned to the New Forest Folk Festival, four days of chilling in our campervan and listening to good music. Had a wonderful time, met up with friends we had not seen for a while and just thoroughly enjoyed ourselves, the weather was OK and seemed to rain overnight rather than during the day. It is also one of the easier festivals to social distance, everyone is still very cautious so no issues for me. We'd normally go to quite a few folk festivals around Hampshire and Dorset but we're not convinced about social distancing at the others so we'll have a quieter summer this year, hopefully next year will be better.
I'd spent the weekend at the festival covering up from the sun and applying factor 50 allover the exposed bits but I managed to get the back of my hands sunburnt for the first time in my life. I have never had sunburn ever, on the back of my hands. Apart from the fact that this is very strange it hurt like hell. Has my skin become more sensitive? Maybe all the meds have changed something? I have no idea but it wont happen again,
We had a large family gathering for a BBQ, again our first family gathering for over a year and what should have been our 'secret Santa' from last Christmas when we were all in lockdown. Unfortunately Siobhan had to isolate as she'd been in contact with someone who'd tested positive for Covid so Niamh was missing as well, disappointing everyone. Secret Santa on hold again! The weather forecast was shocking, torrential rain and thunder all weekend! Never saw a drop of rain and sat outside chatting in the evening sun. Great day was had by all.
This week just gone I went to my first football match for two years and more importantly, the first since my diagnosis. Bournemouth were playing Chelsea in a pre season friendly, perfect chance to see my old team who I don't get to see that much anymore. Now obviously not much social distancing sitting in the stands but again, people seemed to be cautious. This coming weekend we're off to our first cricket match for two years as well at Hampshire, I'm more concerned about keeping covered from the sun to be fair! Still more normality!
The walking is still going very well, now just over five weeks till the big walk, that is coming around way too quickly now so need to get really motoring in August. Walking comfortably for seven to eight miles with a top walk of just under nine miles. I have noticed however that doing long walks two days running wipes me out so I really do need to manage the week prior to the walk very carefully. I still use the gym at home but not on days when I walk, that is way too much, one way or another I will keep the legs moving. My Brother is back next week so we have plans to get some serious walks in with him pacing me. I tend to start too fast, so steady and take my time is the way forward, he'll help with that. Looking forward to it. So far we've raised just under £2,700 for Macmillan and Melanoma UK. It's going very well!
I'm sixteen weeks into my Keto diet, no carbs or sugar for sixteen weeks, really? I have surprised myself and not missing them to tell the truth and no plans to go back. Why would I? Oddly though my weight has plateaued (a bit like my cancer treatment then) but my body is trimming up nicely and all my old trousers and jeans are confined to storage, I have no plans and no need to go back to them. Good though that it is summer as I can live in shorts and T shirts, guess I'll need to go shopping around the end of September 😀
Last appointment for this quarter is a call with the Endocrinology Doctor. First point is the failed steroid reduction and the reasons why as this impacts the move over to Hydrocortisone. We've discussed this before and the feeling remains that if I require anything over 7.5mg a day then it is not related to my Adrenal insufficiency. The Doctor believes that this relates to the amount of brain mets I have and the extra steroids are working on any inflammation caused by the brain activity. She will send a letter to the Oncology team stating this so I guess we'll be discussing on my August Q meeting.
On a far more positive note, my HbA1c is 37 so not even in the pre diabetic range and the second low reading since June 2020 when I was on a high dose of Dexamethasone and my HbA1c was 63 which started the T2d process I have been living with since. In fairness, my diet now has much to do with this as I have been sugar and carb free for over sixteen weeks and will continue with this diet as I have no desire to go back to what I can now see was a very poor diet. The Doctor advised me to stop taking my evening Metformin but continue to take the morning one with the steroids as the steroids cause a blood sugar spike. I will need to make an appointment with my GP as I would prefer not to be registered as T2d. It was always stated to me that this was steroid induced. I will continue to monitor my blood sugar twice daily.
One final highlight, I have a concern over five 'moles' that have slowly developed on various parts of my body. I had reported these on the Skinvision app from Melanoma UK and was advised to consult with my GP. I reported this to the Oncology team and send photos of the moles over to them. The follow up is an appointment to be arranged with Dermatology for a full check. In reality I am surprised that it has taken fifteen months since being diagnosed as having secondary stage 4 Melanoma to get an appointment for a body check but these are strange times.