08 24th September - on hold?
Consultants day and lots to discuss later, lists made!
Anyway, awake at 04.00 with stomach again but nowhere near as bad as the last two weeks, is it finally settling down? Read for a while then dozed and got up at 06.30. Went over the gym again and hammered it for around 40 minutes, heart-rate up to 170 BPM again, this is so much of an improvement! . Bizarre but I have bundles of energy over the last two days, this has come from zero energy over virtually the last month. Breakfast, shower then some Qi gong which is really helping my breathing build back up, Intake now strong again. It's only around 15 minutes twice a day but it has come at a perfect time for my recovery from the breathing issues.
12.20 meeting scheduled on Zoom with the Consultants.
Oncology notes 24 September 2020 with Jack Broadfoot
MRI results from 25/8/20 - all of the known lesions appear to be reducing so further evidence of successful immunotherapy treatment.
There was one area on the left side of brain that looked slightly larger, agreed this was the original 2nd smaller tumour from initial diagnosis, need to monitor this. Possible pseudo progression (appears larger) In conclusion it seemed to be a positive effect and should carry on with Immunotherapy. TBD
Results from bronchoscopy showed no findings of: TB, fungal infection, unusual bacteria or opportunistic organisms, leaving the likelihood of it being Immunotherapy associated inflammation.
The steroids won't reverse any positive impact of the treatment so far, the key priority is to settle the inflammation on the lungs first by using steroids, then slowly wean off over the coming weeks.
Then in 3 months from last scan have MRI head and CT body scan to see where we are (November). If signs look controlled just continue to monitor. If signs of tumours growing again then can offer single dose Immunotherapy or Braf tablets. (At the outset of treatment it could be argued which should be used first as, either way, both options can be used one after the other).
Steroid schedule - Currently taking 80mg pd, From 25/9/20 reduce by 10mg every 7 days. Keep oncology team notified to any changes or issues during reduction (important). Then discuss further at next consultation - date TBC but should aim for two weekly catch ups.
Possibility of single Nivo infusions monthly going forward post steroid completion
Actions. JB - Blood cards to be posted for regular blood checks prior to any meeting
JB - Contact with local GP for prescription for 5mg steroids to assist reduction (currently 3 x 25mg + 1 x 5mg per day)
Possibly the best catch up so far, certainly the most positive, so along with my new found energy and all round good day and so nice not to have any bad news for a change.
Long may this continue!
In reality tho and not a negative, looks like this is with me thru the rest of this year in to 2021.
After the pneumonitis I realised that I was effectively going on a hold pattern for a while, My general impatience had not prepared me for this and I do feel slightly frustrated I guess. I was hoping to be in better place by November but progress will now be slow with no idea of where I go from here. My underlying fear after the tumour count from Bristol is, are these things in my brain getting larger and if yes what are the impacts and what can we do about this?
Since leaving hospital I am struggling. I'm concerned about the amount of Steroids I'm on. 80 mg a day seems massive and along with the Metformin for controlling diabetes I have a very angry stomach and I'm getting very little sleep now, averaging four hours a night if I'm lucky and when I wake I'm wide awake. Still, looking on the bright side I am getting some quality reading time in and some cracking books to boot.
Relating to this I am getting too many zero energy days, wake early, read, get up tired and just have no enthusiasm to do anything. Now I know I am not unique for this, it's common to most cancer sufferers but I have never been like this before and I'm finding it difficult to manage. I also have an issue with general dizziness or my wobblyness as I call it. I don't trust myself and have lost a degree of confidence to do things. I have a few small jobs around the house that really aren't difficult or time consuming but involve working off a step ladder. I just cannot get it together. Another concern is I do not tend to suffer the wobblyness when I am on Steroids so i'm unsure why this is getting me this time.
I am making a list
Friday 25th Sept we reduced the Steroids to 60 mg a day on advice after Consultants meeting. At least three times today I have walked into something on my left side and my vision is 'slightly' out of focus. The vision issue seems to come and go; if i'm working on the computer and then go to watch TV my vision takes a while to settle, then to reading, same again.
I joined a lovely support group on Facebook called Melanomamates, I got very bored of FB a while ago and had stopped using it, but after diagnosis it was mentioned to me to have another look and join the various support groups. I know so little about all of this and, with Covid, most external meeting groups have shut down so FB groups are perfect. I don't tend to post much but I'm learning loads!
I posted this on 27th September, this was a very, very BIG event for me, not the posting….the walk!
I went for a walk today on my own for the first time since May when I became all brain tumoured and wobbly. I walked to the newsagent (1/2 mile there 1/2 mile back approx). I used my walking stick and took my time, probably about 40 minutes. Beautiful sunny, cold Autumn morning. Thoroughly enjoyed myself. It's very nice where I live, everyone says hello when you pass them, very friendly. They're even nicer when you have a walking stick and, amazingly, cars stop to let you cross! To be honest I get so light headed and dizzy I would not have the confidence to go out without the stick. Anyway, first time is the hardest so onward and upward.
I got 104 likes and 14 very nice comments for that. They are a very supportive group, I need to make more effort to get involved.
Qi gong is going well, sometimes I do have balance issues but hardly a surprise with my wobbles. My intake breathing was shallow after the pneumonitis but this is slowly improving. This is a superb exercise for getting my lung functions back to normal and it's a recommended immune boost as well.
I'm not going to continually bullet point my rather slow progress as it revolves around waking up very early, reading books, severe stomach cramps and bathroom visits, you can give way too much information about this subject so probably best not to.
On Thursday evening I joined a Zoom call with the Melonmamates FB group, they are lovely people to spend an hour with. I also got a recommendation for a good self help reference book from one of the guys on the call, I will add this to my small expanding collection of reference books. I must make time to attend this call as often as possible.
In the Melanoma book I learned that Bob Marley died of Melanoma, I knew he had died of cancer but never realised it was Melanoma. Apparently it started in his big toe and spread to his lungs and brain, as if any further proof was needed of how brutal this disease is.
I remember in 2008 discussing my skin cancer diagnosis with a colleague at work and he asked me if I was worried and I replied that of course I was as it is cancer, his reply was, yeah but it's only skin cancer, it's not like you haven't got loads of it!
I guess, in a way, that is how I behaved after a while. I was given the all clear on the skin and lymph node biopsy and eventually after four or five years slowly forgot about it. As I told the group on the Zoom call, my hobbies are golf, cycling, walking and kayaking, all outside in the sun and mostly in polo shirts and shorts, Obviously I need to review my lifestyle going forward.
Friday 2nd October we reduced the Steroids to 50 mg a day as agreed. I also reduced Metformin to two a day. I had discussed with my GP previously and we had agreed to reduce daily dosage if stomach issues became an issue for me. In hospital they increased to four a day and I have been having stomach issues ever since. I am still monitoring my blood sugar daily and this is consistently around 5 to 6 maximum. If this increases I will increase the Metformin again.
It has got to Sunday 4th October and the challenge is now becoming too much. I can no longer tolerate these constant cramps and bathroom visits, coupled with my lack of sleep, it is physically exhausting. I have contacted the Oncology team, I have a blood appointment tomorrow so will drop in to see the team and discuss. As I said before sometimes it's difficult to remain positive when you're being constantly dragged down. I'm struggling with energy so the gym has been missed for a while now as well and this seems to make me even more tired, I need to check back in.
So on Monday 5th October I spent the day in hospital with the Acute Oncology Team. My underlying concern with my stomach issues is colitis which appears to be quite common with Immunotherapy patients. To be honest I do not need yet another issue, you end up with so many different issues it's hard to remember where you started.
After the usual vitals and blood tests (only three goes for a cannula this time) the doctor came to work through the checklist and interview me. This is very thorough with the main focus being around what we'll call bathroom visits. When you consider that these visits can reach double figures daily, and that's just the morning, I did laugh when the doctor suggested that I was suffering from constipation! The reasons were fully explained and, in an odd sort of way to me, they did make sense I suppose. So an X-ray of the stomach area and bowel was suggested as a way of confirming the diagnosis (and convincing me of course). It took a while to get a slot for an X-ray and it was getting late by this time, then I had to wait for the doctor to review the images and get back to me.
A different doctor this time and he confirmed a sizeable blockage is evident in the bowel and further explained the reasons for the current issues and cramps I am suffering. OK I'm convinced. No surprise then that more meds are required to deal with this. Three x Movicol daily! Two x 100Mg Docusate Sodium and back up to Four x Metformin a day. Yet more issues to deal with.
Cancer, the gift that just keeps on giving!
My blood sugars have jumped up again for some reason, they were a massive 23 when I went into hospital this afternoon but reduced to 13 just before discharge. They have asked me to monitor at least three times a day usually 30 minutes after eating and not before I have taken my daily dose of steroids. We have seen a few up around 13 after lunch but they reduce by the end of the evening.
I have an appointment to discuss with my GP next Monday.
When I get low like this the emotions really come out raw again, they disappear when all is running OK but it is the first sign I see when things are challenging me. I keep coming back to this and now see it as a good test of how I am feeling. Music is the first indication that this is coming my way, one song will do it. Back to Jason Isbell again, it's always him!
On the day that I was in hospital in Southampton our eldest Daughter Siobhan was in hospital in Bedford giving birth to our very first Grandchild, a wonderful baby girl, Niamh Elsie, 7lb 10oz. Finally after five months since diagnosis I have some good news to share. Such a nice change.
Summing up, and on reflection, I feel worn down by this episode and in the back of my mind I was concerned that this was more serious than it thankfully turned out. As I stated I did worry that it was colitis but my concern with Melanoma is that it has spread. I have not discussed this with any other Melanoma sufferers as yet but wonder is this constantly in the back of everyone's mind. Coupled with the exhaustion it is easy to get dragged down and I need to be more aware of this in future. It's all a challenge once you are diagnosed with any cancer and since the start of September I seem to have had a few new challenges to deal with, but getting this cleared up with a fairly easy resolution has certainly energised me today (Tuesday 7th Oct), I feel so much better. I woke at 03.00 so a better night of five hours sleep, had a good gym session and an all round positive day.
I need to learn from this as I know there will be more dark days ahead, this one caught me out!
Friday 09th October Steroids reduced to 40 mg a day
I read this recently in the Peter James book "Absolute Proof'" I know this very well but always good to be reminded especially for cancer sufferers.
“Everyone you meet is fighting a battle of their own you know nothing about. Be kind to everyone”
Be nice if everyone behaved like this.
Current favourite album - Jason Isbell - Southeastern
We've been watching and listening to this guy since his days in Drive By Truckers, he was in his early 20s and just wanted to be a guitar hero. It was obvious that, even then, he was a great songwriter.
He is now in his early 40s and has matured into one of Americana's greatest songwriters. This album is just packed full of quality songs.
One song as mentioned earlier drags the emotions out.
Elephant is a beautiful song about his relationship with a girl who has terminal cancer, ever since I was diagnosed with cancer this song melts me every time
Focus on the positives
There are too many negatives in life
Negatives drag you under
Positives raise you up