13 Year 2 Q2
Another quarter so another month of scans and the usual 'scanxiety' although this is getting less so let's not worry too much.
One of the things I sorely missed last summer was a day (or three) out at the cricket. We had three games booked this summer and had our tickets cancelled for two of the games due to Covid restrictions. So we finally managed to get to a game on 1st August. Hants v Lancs in the Royal London Cup. The weather forecast was not good, heavy rain and thunder forecasted for the afternoon. It started fine and we were avoiding most of the rain which seemed to be all around us. This lasted till around 16:00 then the heavens opened and the game was eventually abandoned with the result given to Lancs, rightly so as they did deserve it.
It rained so hard that eventually seagulls were swimming on the pitch. It hammered down! British summer time eh.
Honestly, this is 16.30 on Sunday August 1st!
This week has been a struggle, I feel Ok today but the last two days have not been good. First time in ages I've had two really bad days in a row. Fatigued with severe dizziness, aching and feeling sick. I was considering contacting the hospital today if there was no improvement but feeling fine this morning thankfully. Annette thinks it may be a reaction to coming off the evening Metformin, it is possible as I have reduced by 1000mg so that's bound to have an impact. I always felt that the dosage was way too high but if it has helped getting me to reverse my T2d then so be it.
I have received a letter from the Endocrinologist Doctor confirming our conversation last week. It also states that my Testosterone level is low (7.5) and suggests testosterone replacement. No idea what that involves so I'll assume more meds, when will this ever end I wonder 🤔 The Doctor feels that this may be contributing to my running out of energy and my general tiredness which in turn may relieve my evening headaches. As I seem to be getting quite a few of these again unfortunately I'm willing to try anything, can't hurt can it?
I've had my Dermatology appointment confirmed for 22nd November so I'll assume that it's not urgent then.
I'm taking it easy for a couple days to get over whatever has been going on with my body this week. Todays plans include reading, watching the Test Match and going for my quarterly MRI head scan. Bizarrely as I know many people do not like the head MRIs I really enjoy them, no idea why though.
We have a BBQ with friends planned for this weekend, the weather forecast is shocking! Should be interesting. The UK summer of 2021 is not a patch on 2020 when we were all in lockdown!
This week has not been good and my first really bad week for ages. Fatigued to the point of cannot be arsed to do anything, every thing is an effort, fuzzy confused head and very very unsteady on my feet which wrecks your confidence. Saturday now and not much better. I need energy for tomorrow for the BBQ
The BBQ went really well, four good friends that I worked with and kept in touch. The weather was OK as well. It's Monday and as usual I have no energy, totally wiped out. Still one of the joys of retirement means that I don't work on Monday's, always appreciated especially today.
This was the second weekend running that I have met someone I used to work with who has commented that they are surprised that I look so well. This is a comment that I hear regularly, I always reply 'well, how did you expect me to look?' which is probably a bit unfair. Anyway it reminded me of the scanxity meme so I have included it here.
Just to remove any element of doubt, I may look OK but I feel awful most of the time. Just so you know 😊 But I don't let it get me down.
Which is just as well as I do not feel good this week and headaches are hitting early afternoon dragging me down even sooner. I've been out for six mile walks both days and they were a real struggle, energy and strength just seem to be missing. Yesterday afternoon I went to sleep for two hours and just about to do the same today. I cannot fight sleep when it descends on me. Annette just tells me to listen to my body, there is a reason for this.
I was planning a longer walk tomorrow however I need to have a day off for recovery.
The 'day off' made no difference at all. I still felt awful and zero energy. For four afternoons in a row I fell asleep for a minimum of two hours and then woke with a banging head. On Thursday pm I decided to up my steroids and take an extra 1 mg tab. I will stay on twelve mg a day for a while to see how I get on. I did discuss with the Endocrinology Doctor and her advice was to do it if I am struggling and I am this week, big time. I know that I am not unique with this, many cancer warriors tell me how hard fatigue hits them. The difference between being tired and being fatigued is massive. I never realised the difference, it hurts believe me.
The upshot of all this is that I have not managed to complete anywhere near enough training for the walk this week which will be only three weeks away this Sunday. How quickly did that go?
Next week has to be better.
Well then, not much better this week either, I'm really struggling with energy and enthusiasm and seem to be getting headaches every evening now. I have the Oncology Q review next week but I am not feeling confident of any resolution. The Endocrinology doctor tells me that I only need 7.5 mg a day of steroids to cover the adrenal insufficiency so any issues are related to my cancer whilst the Oncology doctor seems to have little interest and states that I need to discuss the energy/ headache issues with Endocrinology. More questions then.
Not a great month so far and the walk is only two weeks away this weekend, I think I will be glad when the walk is over, my lack of energy and training is beginning to stress me.
A good friend of ours put me in touch with a friend of hers who has been living with Addisons for the last ten years. We had a really good chat for which I am eternally grateful. My main concern and with the walk in mind is how can I tell if I am heading for an adrenal crisis, what are the warning signs to be aware of? In ten years she has only suffered three episodes and all required hospital admittance which can obviously be serious if not acted on immediately. The three key indicators she experiences are 1) breathlessness - panting 2) nauseous and vomiting but not like a stomach upset 3) a feeling of disconnect with reality. Unfortunately points 1 and 3 seem to happen to me all the time! The breathlessness I have always put down to the pneumonitis so never been a concern and the disconnect from reality is a really strange one that I have always put down to the amount of medication I am on. The easiest way to describe it is that it is like watching everything around me on the TV and I'm not part of it, an odd feeling that I have been getting for few months now and not thought too much about it. She recommends taking a double dose of steroids on the day of the walk and maybe an extra 1 mg a day in the week leading up to it. Also keep hydrated, plenty of water. Dehydration can stress the body so not good for Addisons. One key point discussed and something that has not been mentioned to me before is the importance of maintaining salt levels in the body. One of the issues with salt deficiency and Addisons is fatigue! No mention of this from any of my medical teams. Up till now my main points of focus have been cancer, getting fit again and my diet because of T2d. With my constant fatigue and bad heads I'll need to spend a bit more time focussing on Addisons and soaking up even more knowledge.
Everyday's a schoolday!
We've been getting in local walks, four or five miles but I need to step this up as I'm running out of time. On Thursday my brother took me out on one of his New Forest walks which turned out to be just a tad under twelve miles, by far the longest walk I have done since diagnosis. It took just over five hours, I'm unable to rush this as I don't seem to have the energy and so mindful of not stressing my body. It was a hot humid day to add to my challenge but I did it. Now, it's fairly obvious that the small bumps in the New Forest do not match the hills of the Dorset Coast but so be it, I did it and felt quite pleased with myself eventually. I will say tho that I would not even try this on my own, I need someone to look after me and pace me with reminders to drink water all the time. I felt OK ish Thursday evening and Friday morning but by late Friday afternoon an awful headache descended on me with the fatigue thrown in and stayed all through Saturday as well. Maybe I need to hydrate even more, maybe the humidity got me, maybe I should not go on long walks, no idea. I did get some Sodium tablets (to add to all the other meds and vits!) in the hope that they will help the debilitating impacts of Addisons. I will try these tomorrow on another training walk with Bruv. We'll see how that goes. It's only two weeks till the walk, and I'm not sure I'm feeling strong enough. Well I'm committed now but the time has flown by!
On a much brighter and far more positive note we had a band catch up this past week, all five Devil's together for the first time in ages. It was really good considering the reality of over eighteen months of hardly any full band get togethers at all. We all really enjoyed ourselves but guess what? I was wiped out the next day! there really is no stamina in there, still I enjoyed it but it looks like I have a trade off for activity days.
The other good point to note is that I had to but a new pair of walking shorts and only needed 34" waist and they fit perfectly 👍
I had my quarterly review with the consultant on the 26th. A face 2 face meeting again which is preferable, I guess the video meetings were fine during Lockdown but they lack something vital for me, F2F work much better and you get to build a better relationship with the team. Also in the meeting was the senior cancer nurse and a junior doctor.
I mentioned the update from the Endocrinology doctor that all I needed was 7.5 mg a day prednisolone and anything over that is related to cancer not the adrenal gland. I'll just say that it didn't go down well as a starter to the meeting and confirms my feeling that I'll need to rely more on Endocrinology than Oncology for a solution to this. Maybe I just shut up and manage this with 12 mg a day going forward. At least it works for me sometimes at least.
One issue that is constantly bugging me is the an update on the number of tumours I still have. I am told at every meeting that all is good, tumours are responding, nothing to worry about, good progress etc. but when I press on the subject of the quantity of tumours I usually get a vague response with any of the above answers. When I pushed this time the Consultant went through the MRI slides and stated that he could see no evidence of any tumours. That was somewhat of a surprise and we both struggled to process this. It just begs the question as to why this, as the key element and concern of my cancer treatment had not been in anyway quantified to us previously despite my constant enquiries. I'll have to assume that they didn't all disappear at once in between the last two MRIs. Even a few weeks later this still seems odd to me.
We decided that we wanted to review the follow up letter from the meeting. It was so strange in that we both felt no elation to the news. Once the Consultant had finished his part we had a discussion with the nurse who was probably wondering why we both didn't feel more elated. She asked if I was OK and stated that my emotions seemed 'flat'. My two responses are that I'm not and never have been what I'd describe as excitable and as I have Addisons I don't have much adrenaline pumping around my body either, I call it level rather than flat. I appreciated the conversation as the reality is that in all fairness, after fifteen months no one had discussed with me how I was feeling emotionally or how my mental health was coping. It also provoked further discussion between Annette and myself afterwards. During our time since diagnosis we have tried to remain level headed, calm but also positive. I guess we never considered how this comes across to others and how it is interpreted by them. We are not blasè about this and we fully understand the impacts and life changes but we strive to be level-headed that's all. I do hope that makes sense.
September already, that was quick then. The last few weeks of summer whilst we limp into Autumn. My favourite months are behind us again but I guess with my new life of covering up from the sun it is probably better for me.
The follow up letter then, two points.
1) Review of recent scans. "I was pleased to tell Mr Moloney that these continue to show excellent response to treatment with very little in the way of residual measurable metastatic disease.
2) I have reassured Mr Moloney that I think there is a good chance he will remain in remission from his melanoma in the longer term.
There is very good news in here and I should be way more excited than I am. I feel that I need to see my next set of results but he has discussed with me my very good response to the Immunotherapy.
Talking of mental health, I saw this on Facebook so I pinched it. Sometimes I need to remind myself to keep fit mentally especially as Annette is back at work so I have more time on my own. It can be way too easy to get lost in your own little world.
Thanks to - https://www.facebook.com/actionforhappiness/
So after so many struggles during preparation we finally got to September 5th and the (what is now but never used to be) BIG walk. This was beginning to stress me out actually. I had one long walk under my belt of 12 miles which just about knocked me out for the following week so I have no idea how this is going to impact me. I started to feel very apprehensive in the lead-up to it.
We booked a house on Airbnb in Weymouth for the weekend as I did not fancy getting up very very early to get to Weymouth and check in for a 09:00 start. It also meant we had somewhere local to go back post walk therefore avoiding the Sunday evening traffic heading back east.
I'm getting slack again in updating my blog, September is running out. The walk, it finally happened. All the work leading up to it I guess paid off but I am still not super confident on my feet. I could not have done this walk on my own or without my walking poles. There was some brutal downhills. The key to my success on the day was, on the advice of my new Addisons friend, to double my dose of steroids for the day, also to carry some extra and take more if required. We stopped at the only feeding station where Annette joined us to see how things were progressing. I was feeling really tired by now and it was a lovely but very hot day which was wearing me down (especially as I am always overdressed now as necessity) so I took another 5 mg. This worked a treat to be fair and kept me going for the rest of the day. I also drank gallons of water. Gallons!!
It was a tough walk, the South West Coast path is stunning and worth taking the time to walk parts of it especially through Dorset but those hills! But hey, I did it. I was so tired by the end I just felt relief that it was over. I even managed to sleep eight hours that night as a bonus.
I also had fantastic response to the sponsorship. The final totals are £1,232 for Macmillan and £2,210 for Melanoma UK, amazing and thanks to everyone for helping us to hit these totals!
Me and Bruv at the start and finish, it was long, it was tough, it was hot but it was a fantastic day and I did it 😊 But I am never doing that again. Some scenery from the day as well, you may be able to gauge the challenge of the hills
The following week was a struggle and I knew I'd pay the price for doing the walk. I'll assume that it is the Adrenal issue that causes this but I was just so fatigued afterwards. Basically I did nothing, all week, nothing and I certainly did not go out for a walk.
Totally off the wall we went on a one week cruise later in the month. Annette got a good deal, it was sailing only, no stops just a week of cruising which I happen to love, it is easily the most relaxing thing you can do. I just love it! Sailing from Southampton, around the Channel Islands, Bay of Biscay, north coast of Spain, west coast of France and back home. The Captain planned the route from one high pressure system to the next on the map so we had a perfect week of mid 20s late September sun.
A Keto diet on a cruise can be a challenge, way too many temptations. So a few puddings I shouldn't have had but counteracted with an hour in the gym every morning. One night I did crack and had a Pizza. Honestly, I really did not enjoy it, what a waste on a pile of useless carbs! What was I thinking? Never again.
One downside (there is always one...) Health insurance. We have had a rolling annual policy for years which had not been renewed due to my health and not being able to go anywhere due to covid. It took me the best part of an hour on the phone to go through my litany of ailments with the end result that the cost of the insurance was more that the cost of the cruise.
The truth was that I really did need the rest and change of environment, I had no idea what the walk has done to me but I'm not feeling great since with the usual fatigue, bad heads and the nondescript 'just feeling odd'. It is an agitated, abrasive uncomfortable feeling, it's like a feeling of dread or that something is badly wrong, I struggle to describe it but I feel it rather too much lately. One evening after a really bad day I Googled 'How do I know if I'm having an Addison crisis?'. I really did feel that concerned and I guess until I actually have one I wont fully understand it. This is probably my one serious worry now, maybe I think about it too much. At the moment, if I am honest the bad days are out-numbering the good days.
My list of symptoms - How do I know if I'm having an Addison crisis?
- extreme weakness
- mental confusion
- nausea, abdominal pain or pain in the side
- a sudden pain in the lower back or legs
- a loss of appetite
- skin rashes
- a high heart rate
- severe dehydration
- pale, cold, clammy skin
- rapid, shallow breathing
- low blood pressure
- severe vomiting and diarrhoea
- fatigue and severe muscle weakness
- severe drowsiness or loss of consciousness
The Endocrinologist Doctor said to me ages ago, try taking 15 mg a day to see how you get on. My stubbornness in my desire to reduce my steroids refused to do this but eventually I thought, just do it!
I had also joined an Addisons self-help group on line and posted an introduction and detailed my steroid issues. A couple of good responses suggested that I don't fight it and should flex my steroids within agreed parameters if required and also to spread my intake throughout the day rather than first thing in the morning, so I now take 10 mg in the morning and a further 5 after lunch. It seems to be working to a degree so far but I am disappointed to be going in reverse with my dosage. Still weary but no headache for a few days now. Let's see how the next few weeks go before I get too excited.
I was reminded this week that it was November last year when I first hit the issues on my steroid reduction from the Pneumonitis treatment, this year has gone by so rapidly, frightening really but I never expected this to still be an issue eleven months later. It's my only BIG issue at the moment tho so all is not that bad is it?
We went to see Saracens play yesterday, my first time back at a game since my diagnosis. We've had season tickets for the past twenty years but I had to let mine go last season as I could not really see myself going too often and cannot guarantee how I'll feel on any given day. It's a long drive and a long day end to end and I don't do long days very well anymore. Annette kept her season ticket going and she bought me a ticket 😊 very nice of her it was. Saracens won as well so worth the journey. While we were up that way and not been up there for ages we dropped in to see some good friends on the way back. Very nice it was too but the downside being we did not get back home till after 11 pm. So today I am drifting through the day doing not very much at all, just my usual foggy haze, lazy day. It was a good day and catching up with some great friends as well. No complaints from me.
This article was in the Guardian on 12th October. Describing the progress made with Immunotherapy and ipi/ nivo in particular.
Obviously of great interest to me as it's something my Oncologist has stated saved my life.
A few side effects, mainly Pneumonitis but may also be the cause of my lack of Adrenal function. I'm still here tho (my new mantra)
I feel blessed that I did not have to face Chemotherapy and I'll hazard a guess that any treatment aggressive enough to deal with cancer cells will cause a few other issues but from my side, I'll live and deal with them as we go along.
It did allow me to meet my first Granddaughter so that will do for me. I understand that not everyone is able to receive Immunotherapy but many can fortunately. The hope that this will give other cancer fighters is immense. Good luck, love and best wishes to you all xxxx
I started 15 mg a day a week ago, 10 mg in the morning and 5 mg at lunch. The immediate impact was that I was awake for the entire night on the first day, no sleep at all. My body is really weird all the time now, not much makes much sense to me anymore. As always a sleepless night happens when you really do not need it, I had an 08.30 appointment that morning with a Zoom call at 10.00, I some how made it and did not fall asleep, that was later! On the bright side it was the only night like that fortunately, then back to normal, no trouble going to sleep then waking early.
Evening heads 'seemed' to be going OK although I was getting a dull headache like most nights but it never progressed.
Last night I had a 'slight' headache going to bed, no issues going to sleep but awoke at 01.45 with a monster migraine. Full on monster and much worse than anything recently. Took a Maxalt but could not get rid of it or go back to sleep. Finally dozed off after 4 and woke at 8 but you know that if you get woken by a migraine at 01.45 then the day will not be a great one. It wasn't.
I could handle the fatigue but I really struggle with the bad heads (I know I've said that before..). Let's see how the next week or so goes, it may be my body adjusting, yet again to a change in Meds. I have an Endocrinology appointment in a few weeks so
November is coming so I received my first appointment, 1st Nov Head MRI. The waiting starts again.
I have been going through a period of 'head fog' lately, I need to wake up, refocus and get moving again and start taking Addisons seriously. I may have not been taking this seriously enough so far especially as I have been somewhat driven by my desire to reduce my steroid intake. I've got this forever now but guessing that I have still not adapted fully to my new world as yet.
We got away for a weekend in the middle of October down to Swanage to catch up with friends and get in a bit of coastal walking for the last time this year. A really nice weekend and the weather is amazing for October. We managed a couple of 5 mile loop walks covering parts of the SW coast path that we had not covered before with a few nice hills to stretch me. As before I had to take extra steroids to cover me, any extra activity now requires more steroids. It worked but again, the following week was a wipe out, the price I now pay for what essentially are short walks.
To be honest October has been a wipe out for me, a bad month of head fog, fatigue and evening headaches coming and going. I struggle to pinpoint anything this month, it all seems like fog since the walk in September.
As an example, last night I went to sleep at 23:00 and woke up, wide awake at 01:30. No chance of sleep so read till around 05:30 then dozed off till 08:15. Today is total fog and possibly a snooze after lunch. My life has changed but, as I have said before, no work is involved so it doesn't matter.
We had a very nice visit from our eldest daughter Siobhan and Granddaughter Niamh at the end of October to cheer us up and keep us busy for four days. Great to see them, Niamh is growing up way too quickly. 😊
So my Y2Q2 ends and I now have all my appointments booked for the quarterly review in November. MRI and CT scans are both next week. 12th Nov - Endocrinology.
18th Nov - Blood Tests. 22nd Nov - Dermatology (at last) and finally 15th Nov Q Oncology review
This week I have been on the Keto diet for 29 weeks!
I'm spending bundles of time this quarter listening to and playing guitar along to John Prine and why not? A great way to spend time instead of wasting it! John sadly passed away last year, an unfortunate victim of Covid. The box set is his first seven albums and probably the finest of his career. If you've not listened to John before, why not? He's on Spotify bless him, go for it 👍😀
I got my Covid booster jab on Saturday, no issues but guess what, evening headache yet again. What is wrong with me, why does this keep happening? Full on banging headache so went to bed early and slept thru till 05.30 (the clocks had gone back as well so even longer)./
Reading back through this page it all seems very negative which was not my intention, there has been more good than bad over the last three months but I guess I tend to update my blog when I have something to say. Therefore it seems that I only have bad days, not true believe me. Reviewing this quarter and I appreciate that with the exception of Addisons I don't have much else going on. Probably need to change my approach for updating the Blog 😀
We went to see Billy Bragg last night, he was awesome, a wonderful evening in his company, got home late and knackered today. Nothing new there then. Onward and into November.