15 Year 2 Q4
New quarter so it must be new scans time. I had a late Thursday evening CT scan and that ran late as well and then, as I had a strange reaction to the contrast on my last CT in November I was held back for a while afterwards. All OK this time thankfully. Friday in Lymington for my quarterly catch up and first F2F with the Endocrinology doctor. I had been looking forwartd to this F2F at last after all this time and very beneficial it was too. I wish I'd have had a meeting like this fifteen months ago when I was struggling with steroids as it was becoming obvious that I had an Adrenal Gland issue. Regardless, it is all going well now and I am managing living with steroids as best I can but more importantly, I understand it all so much better now. The appointment was early so we went into Lymington to wander around the High Street, do a bit of shopping and finally a well earned lunch by the harbour, crab and prawn fishcakes, perfect. The weather for February was lovely, chilly but sunny, just the sort of winter's day I love. I also picked up a little bargain in one of the many Charity shops that populate all high streets nowadays. A 'travel guitar' so around 3/4 normal size and perfect to live in our campervan when we go away and a bargain at £70. A good morning out indeed. Saturday was MRI day and another late one, 17.15. Again it was delayed and took the best part of an hour. It was 20.00 by the time we got back home.
I had been doing OK with my new enco/bini cancer meds and feeling slightly confident that I was over the worse and taking them in my stride. Always a mistake to think that with cancer as we all know to our cost. It was another migraine on 9th February. It started around 17.00 and quickly intensified to the point that light, noise, smells, anything was making me feel a whole lot worse. Migraine meds had no impact and I repeated two hours later, still no impact. I went to bed at 21.30 but could not sleep as the pain was preventing any sleep or relaxation. Around 23.00 the nausea began and I started vomiting and could not stop. This carried on all night, even when there was almost nothing to bring up, the retching and vomiting continued. By 10.00 the next morning we were getting very concerned as I could not stop the retching so was unable to keep anything down therefore I could not take any meds. The real worry was that I had taken no steroids for over 24 hours and the possibility of an Adrenal crisis was very real. Additionally my head was still pounding with lights, noise and smells still impacting me.
Annette phoned the Acute Oncology team as I needed to get to hospital asap. They were maxed out with no beds available and a queue for beds as well. They suggested going to A&E immediately, they would notify them that I was coming in with the concern of an Adrenal crisis so I could be triaged through as quickly as possible. They also suggested sending an ambulance just in case but I declined for some reason I still don't understand as I felt awful and they could have administered meds as soon as they got here rather that a journey through A&E. I should not be allowed to make any decisions when I feel like that and will not do that again.
In fairness I was triaged through quickly into the Pitstop area so I got a bed and was put on a drip immediately. In addition to the Adrenal concern I was severely dehydrated. I was there for around two hours before being transferred to the Oncology ward when Annette had to leave, no visitors or family members past A&E. I was given the usual bloods and vital checks and remained on the drip for sixteen hours.
I finally ate half a tuna sandwich around 21.00 with a cup of tea and took some steroids (just in case).
I dozed off around 22.00 and slept on and off through the night. I put on headphones and listened to an audio book, always a great way for me to sleep in a hospital. I'm fairly certain that is not the reason they make audio books but it works for me. I woke around 05.30 and a very nice nurse noticed I was awake and brought me a cup of tea, I was gasping by then. The doctors came around early and checked me over. They told me that they had checked the MRI from the weekend and there was no change from the last scan so no further evidence of any brain mets. Good news I know but the ongoing migraines are now wearing me down, the bad ones are getting far too frequent. I was discharged around midday and back home to do nothing for the afternoon, feet up listening to music and a light lunch. I still felt very fragile and a bit battered from the previous two days but all safe and warm so that will do for the meantime.
As it was Thursday we also had a MelanomaMates call in the evening, I was not going to join the call as I still felt very frayed around the edges and tired. However, as I had missed last weeks call due to the overrun on the CT scan I thought I better join. In fairness the call is always fun, we are all patients on the call and all facing our own challenges, we all have an opportunity to tell our weekly catch up and it brings out the best in everyone, it's fun with bundles of laughs. The two ladies, Dianne and Gillian from Melanoma UK who host the call are fantastic, they run a wonderful call for us in their own time and never ever let us down. They will never know how much they have helped me thru this. I first joined the calls around sixteen weeks after my diagnosis when I was totally bewildered after having my life turned upside down with brain surgery, more brain mets than I could handle, T2d, Immunotherapy and Pneumonitis. It was through the first Covid lockdown when I really had nobody to discuss and talk through all the issues and challenges that had been thrown my way. Somehow or other these call have helped to keep me centred and balanced, I have no idea what to call it but they've somehow kept me on track. I am eternally grateful to them both.
For the best part of a week after being in hospital I felt fine, more energy for a change, an improvement on the appetite with a positive feeling again (which I do try to maintain). Whatever they put in the drip I need more of! It couldn't last too long and incrementally over the week I slowly returned to fatigue with a loss of appetite. Evening heads are still not great but it is almost the end of February now and I've not suffered a migraine since, quite a few annoying evening/ night headaches but no migraine. Gill from Melanoma UK suggested that cheese may be a trigger so I have been very careful with my cheese intake. Unfortunately cheese is a big part of my Keto diet for protein and I had probably been enjoying it far too much. To tell the truth it has been hard to maintain my Keto diet lately as I don't feel great most days so bread (which I have been missing) has been revisited on a few occasions. It's really not going to be a habit as I like my new weight so would like to maintain it but even the gym in the mornings is a struggle so I need to be careful.
I probably keep repeating this but my 'new' world revolves around loads of sleep/ no sleep, constant fatigue and headfog and bad heads. I guess I should be used to this by now.
What frustrates me more than anything is my total inability to push through the fatigue as I just cannot be bothered to get going and do anything. Arms and legs feel weak all the time. However, if the cancer drugs are doing their thing on my tumours then so be it, I'll put up with it.
After the Statin migraines I had agreed with my GP to stop taking them and not to take the recommended meds from Neurology (Amitriptyline) in case they reacted with the cancer meds. At my meeting with Oncology the consultant recommended that I should start taking them so I have. There are no obvious signs or indicators as to what may be causing my migraines so these may help.
Starting on 10mg of Amitriptyline and increase by 10mg every two weeks up to a maximum of 75mg.
The first few nights I slept through the night, one night I managed over nine hours, unheard of for me. I still felt knackered all day regardless. I'm back to normal now so waking up throughout the night and unable to get back to sleep. We'll see how it goes.
I've mentioned this before and it's an issue that will not go away...zero energy days. Annette said that some mornings when I come downstairs after waking up that it looks like my eyes are still in bed. Some days it certainly feels like it. I get a few a month and it is a struggle as it annoys me to feel this way. I had one day at the end of February where everything was an effort so after lunch I started watching a box set of the Big C that my daughter had bought for me. I wont say how many episodes I watched but I didn't move much for about ten hours. It was a good way to get thru a zero energy day but not something I want to be habit forming.
So I just had to find out the side effects associated with Amitriptyline, all side effects appear to look pretty much the same!
Amitriptyline may cause side effects. Tell your doctor if any of these symptoms are severe or do not go away:
- weakness or tiredness
- dry mouth
- difficulty urinating
- blurred vision
- pain, burning, or tingling in the hands or feet
- changes in sex drive or ability
- excessive sweating
- changes in appetite or weight
The list is endless of all the meds I'm on now, the main ones for me are Nausea, vomiting, drowsiness, weakness and tiredness. Headaches is a funny inclusion though??
It's mid March now and almost Spring thankfully. The days are getting longer and the clocks will be going forward soon, my favourite time of year. Anyway, still no serious migraines, just a few foggy heads.
We went away for ten days celebrating our Ruby Wedding Anniversary at the start of March. Four days with the family in Bourton on the Water then on to Broadway for four days and finally over to Hook Norton to catch up with Friends for the last two days.
This is a good test for me as I noticed in my new enco/bini world that my energy runs out really quickly and changes in routine don't always prove a benefit. We had a great week with a few minor hiccups for me. On Sunday morning I woke with a bad head and feeling nauseous so stayed in bed for a while. I got up around 10 for a shower, the head had eased but the nausea was still with me. I was just about to get in the shower and started vomiting. Not like the last time which was endless, this seemed to clear my stomach contents and then felt better, had a shower and all was good. We went out for a great Sunday roast, my appetite returned and all was good. Although I have nausea most of the time it is unusual to vomit.
I'd struggled through the week after the trip with a head cold which seems to happen when we go away and I mix with others, I guess isolating will lower your resistance to things like common cold. It didn't last too long fortunately but on the Friday I woke around 02.30 with a bad head which slowly got worse and along with nausea. At around 06.30 I started vomiting yet again, now that does seem to be becoming a habit. That was a bad one and lasted till around 17.00, I got up, stood under the shower for ages and finally felt human again. Which was just as well as I had five friends from work coming around at 19.00 for a curry night. I had 80 quids worth of curry being delivered at 19.00 so had to feel better but all was good. We had a great evening talking about nothing on particular, I was starving and the curry was delicious. Alls well that ends well then so the day redeemed itself.
I seem to be in one of those doldrum periods where not much is happening. Good days, bad days in a loop. The Amitriptyline helps me to sleep for ages but does not help with my fatigue and energy levels which have been so poor since the introduction of enco/bini (they weren't that good before either). Also, the head fog is even worse in the mornings, takes me ages to wake up fully. After the migraine the previous Friday I thought it best to start increasing the Amitriptyline dose as recommended by 10mg as my body *may* be getting used to it so its effectiveness wanes. The following Saturday after eleven hours sleep I spent the day half asleep and very irritable, another poor day that passed me by without much input from my side.
I reversed my decision to increase the dosage so went back to 10mg only. If that is how it makes me feel I will put up with a migraine once every couple of weeks rather than irritable head fog days. The only issue I need to watch and monitor is the vomiting but the last two times it was only once rather than the endless episode which ended up with a stay in hospital.
I had my monthly catch up with the Oncology Doctor to check on any issues from the cancer meds. No issues at all so progress is good. Funnily he knew I had a cold as my white blood count was high! No secrets eh.
I had my quarterly blood test for Endocrinology this week. It's my touchpoint for my Testosterone and HbA1c levels so always interesting to see how they are getting on.
March has flown by and I should start to see appointments come through soon for my Q scans again. Time really does fly by when you're at home most days.
April is a nice month, the clocks have gone forward so the evenings stay lighter longer, the garden wakes up with colour everywhere, the weather is getting warmer and the cricket season starts. What's not to like about all that then? All is good after the winter.
As we head towards the third Covid summer I am still cautious at the thought of mixing in big crowds. We have a few festivals lined up which I am very much looking forward to. However I am cautious as Covid is still not over by a long way but very few appear to be wearing masks in public or giving others space. To me wearing masks and giving space is respecting others but it seems like i'm in the minority now.
Figures above are from todays Guardian UK newspaper 12th April 2022
So not over by a long way. I've heard some people saying that 'it's just like the flu'. I have no idea if that is correct but all I know is that i'm (CEV) clinically extremely vulnerable and have been warned to stay isolated as best I can. However, like the rest of the UK population you reach a point where you're fed up with it all. The last two years leave me with a desire to get on with it. I'm 65 now so it's not like I have years ahead of me, especially with secondary stage 4 cancer. I'll be as careful as possible but life goes on.
My health updates seem few and far between which of course is a good thing, apart from headaches, vomiting and fatigue that is. I hadn't been using the gym much since January as the enco/ bini combo has stolen all my energy and I felt really shaky after a few sessions so left it for a while which unfortunately resulted in me getting out of the habit of getting up around seven every morning and going over the gym for 45 minutes or so. This had to change in April and I guess the advent of Spring woke me up and got me moving again. April also signals a year since I started the Keto diet. Which is still going strong with a few exceptions every now and again, notably bread and chocolate of course. It's Easter this week so I'll worry about that after the weekend then 😂
I have received advice from two friends who take Amitriptyline after discussing my issues with them. The advice is that I am taking them way too late in the day and both suggested taking my dose by 19.30 the latest. I tried for a few days and it worked so well I increased back to 20mg. If all goes well I will increase as advised. The instructions from the Pharmacy is to take 'at night' which is somewhat ambiguous so I took that literally and I was taking mine before I went to bed, I had noticed that it then took me ages to go to sleep then almost impossible to wake up the next day. Taking them at 19.30 works a treat so I go to sleep straight away and sleep nine or ten hours, most unusual. I do get very weird, vivid dreams which sometimes wake me up, but I manage to get back to sleep. This never happened before so progress of sorts 👍
I keep vowing that I will never buy another Remastered/ Remixed with bonus tracks cd again. For these two I made an exception (again) . The late great Tom Petty's masterpeice solo album with all the tracks originally planned for a double album but the record company refused and released it as a single. Extras include home demo's of all the tracks and a live recording. Also a companion cd of alternate versions of the original album. It will keep me going for months. Quality and highly recommended 😀👍
I received an update from Endocrinology after my recent blood test. The first time in ages I have received a positive update from anyone!
So refreshing and a nice change. Review month coming up so hopefully this will continue.
So as May approaches and I am really hoping for further positive news.
Last year I was so positive as my cancerversary was on the horizon but this year I just feel worn out, tired and battered. That is not a gripe as I am fully aware that things could be so much worse. To be brutally honest I did not believe that I was going to get through 2020 at one point so I am still looking forward and feeling positive. It's just that some days I feel crap. I reckon it's about 5 good and 2 bad days a week. It's OK but I do not feel that warm glow of achievement that I felt last year. I was so looking forward to May 15th. This year it's probably something to do with 21 Meds a day I guess.
It was going rather well till last November and tumours on my Pancreas with the introduction of Encorafenib and Binimetinib. The Encorafenib of which I take six of every lunchtime seem to have an effect on me. I have mentioned this before. They make me feel sick and the smell of cooking in the evening diminishes any appetite that my have survived (not much). A further impact with these is when I get a migraine I vomit endlessly which is an issue as I am unable to take my steroids so an adrenal crisis is a real risk and it appears that I narrowly missed one in February. It has happened a further two times since but nowhere near as bad as February, still not pleasant.
I was hoping to leave the migraines behind with the introduction of Amitriptyline and to be fair I seem to have lost those regular evening headaches that started late afternoon everyday so that's a positive step. Since the advice to take them earlier in the evening all is going fine with the exception of the monthly migraines. The added bonus of eight hours minimum sleep a night, fantastic but so strange. I'll increase to 30mg a day next week and monitor. I'm not convinced about increasing to 75mg a day, who knows what time I'll wake up then. We'll see.
We had a brief discussion on the weekly MelanomaMates Zoom call recently about how not working improves your stress levels and mental health. I know this is not an option available to everyone and I am fortunate in that I was able to retire.
I have not worked since June 2020 when I stopped prior to my brain op. I then had to go through six months of endless stress and worry as issues piled up and it all seemed to be getting worse. With the never ending support of my family, fantastic friends and the lovely ladies from Melanoma UK we got through it. Thanks to you all
I know that if I had to face going to work I could not have done both. It was a blessing and still is.
I pinched the Image opposite and cannot remember where from but thanks Denzil. You do know that you are 100% correct and cheers for the reminder 👍
I finally got to meet the amazing Diane Cannon from Melanoma UK at Shane McCormack's anniversary party in Eastleigh.
Diane along with Gill Nuttall run the weekly MelanomaMates Zoom call. Their help and support has been endless. I came across the weekly calls in August 2020 when I was in a very strange place.
These lovely ladies have been there every week for us on Thursday evenings ever since. I would have struggled without their support especially through the covid lockdowns. Now I feel guilty if I miss a call! It's like a little weekly on-line family get together now.