That’s what I need to say to myself. Yes, I have cancer but it could be so much worse. I’ve spent months feeling sorry for myself because I’m a bit tired and can’t work but I have to focus on the fact I have it easy.
Really the only side effects I have from my immunotherapy is chronic fatigue and some joint aches. Of all the side effects I could have these are the ones I’d want. There’s no pain, no organ issues, no other illnesses or “itis’s”. I’m not feeling sick I have full mobility. AND it’s working for me.
Reading some online blogs and forums it could be so much worse. I AM very lucky.
Yes, fatigue is hard. Pull your socks up Davis and kick this things arse. Sleep when you need to sleep but stop feeling sorry for yourself.
I’ve been back at work for almost a month now and have to say it’s been good to get my brain working again. What I didn’t expect was that it would be so hard on me and my body both mentally and physically.
I’m so lucky to have understanding employers and supporters but am very conscious of seeming to be unreliable and am paranoid that one day they’ll say enough is enough. And I’d understand. They need staff they can rely on.
I was hoping to be back full time after 2 weeks of working half days but after 3 weeks I was still struggling with fatigue where I’d shut my laptop at 2pm and then feel like I’ve walked 10 miles. I was so exhausted but not just tired. Sleep didn’t fix it and often I couldn’t sleep as I had aches and pains.
I just had no energy.
On top of this is the seemingly random ways that side effects strike. I can be feeling ok for days then suddenly get stuck down with stomach cramps and nausea (today and yesterday) or aches in my legs or back (last week) or headaches or constipation or any number of seemingly minor ailments that come from nowhere, last from a few hours to a few days and then go.
Each time it happens is a stark reminder to me I’m still very sick. On the outside I do my best to be normal and do forget from time to time.
I just hope the side effects are positive and mean the treatment is still actively kicking cancer to the kerb.
There are still some improvements. I can walk and hold a conversation a lot easier. I can walk a little further now than I could a month ago.
I just wish I could get rid of the fatigue. It’s like I’m held down by a weight and held back. Everything is a battle to just do stuff. It’s got me down the last few days and reached a peak today where I just had to curl up and sleep from about 12pm to 8pm.
I was also feeling really low following the news that racing driver and occasional Top Gear presenter, Sabine Schmitz died overnight from breast cancer, aged 51. She was diagnosed in 2017.
Sabine Schmitz 14 May 1969 – 16 March 2021
She got 4 years from diagnosis. It made me ask “what will I get?!”.
I know I shouldn’t think like that and I honestly try not to but it’s natural to wonder, to be concerned. To be scared.
Treatment number 6 tomorrow. I’ve done this 5 times already so am very experienced and know what’s going to happen.
So why am I scared stupid about my treatment tomorrow?
I know what if feels like, the side effects I’ll likely get and how long they’ll last.
I know about the cold sweats, headaches, leg aches, back ache, chest pain and fatigue that can last anywhere from a few hours to a few weeks.
I know about the uncomfortable feeling of the medication first circulating my body, the little bit of nausea and sweating after about 10 minutes that lasts just a few minutes.
I know I’ve been lucky not to have any of the major side effects that can accompany such a toxic and aggressive treatment.
So why am I terrified about treatment #6?
Could it be the fear it’s worked it’s magic and that’s it? I’m not going to continue responding? I’ve had my good news and now it has to be bad? That’s how life works isn’t it?
The truth is I don’t know. What I do know is that I’ve felt crappy all day, really tired and lethargic. My I think this is mental rather than physical.
Having treatment tomorrow is a reminder I’m still seriously ill despite feeling ok for a few days.
I guess I still have some adjusting to do to get used to this new normal.
I need to get used to 1-2 weeks of feeling crappy, 2 weeks feeling ok. To get used to a constant tight chest and aches in my lungs when breathing deeply. To get used to getting tired really easily.
I’ve been told these symptoms may get better over time but that’s long term.
Short term, this is it.
But you know what? I’m ok with that and despite this sounding a little like a pity grab, it isn’t.
I no longer have to fight to breathe, or have stabbing pains in my chest, or struggle to get out of bed every day. I no longer get kidney pains in my back or have no appetite (well maybe I could do with that coming back every now and then)
I also no longer have a constant dry hacking cough that annoys me and everyone around me causing me to double up and nearly pass out from time to time.
So yes I’m scared about tomorrow and that’s normal. That’s ok. This whole journey is scary. Life. Is scary.
This is the picture of a very happy man! One who has just been given some amazing news.
My treatment is working. Not only that but it’s working better than anyone could have hoped.
A good outcome was the tumours staying as they were and no longer growing, but this is great news.
The tumours in my lungs are no longer visible on a CT scan. Meaning they’ve either gone or are now smaller than the resolution of a CT scan.
The tumour in my right kidney has shrunk! From 11cm to 5cm. More than half!! I’m so relieved.
We carry on with monthly treatments now and when covid has come back under control and operations are being carried out again they will consider removing my kidney.
I contacted the oncology team today about the chest pain and they wanted me to go to a&e to get checked out. “Better safe than sorry”
So at 10:15 I went voluntarily into A&E. I was seen very quickly and the waiting room was empty when I arrived. Hooked to an ECG within 10 minutes and the staff took my “vulnerable” state very seriously.
Within 20 minutes I was in the minor area and in a cubicle having another ECG with the promise of one more to come.
I mentioned how quiet it seemed and the staff gave a nervous laugh. A&e minors is quiet but the rest of the hospital was very different. All departments and wards were at capacity.
The doctor I saw was worried about a possible lung clot so organised blood tests and a chest x ray and she was going to see if she could get the results of my CT scan from last week. This was about 11:30.
All tests were completed by 12pm but I got the impression I was in for a long wait for results. By this time the pain had actually gone, completely. I was lying on a slightly elevated bed and something about the position had helped.
The doctor kept checking in and apologising about delays but couldn’t give me any ideas on time. Unfortunately with no pain to focus on my mind started wondering and worrying. What were they going to find, how long would I be here, is this another overnight stay.
I was also acutely aware of helicopter noises at least 2 or 3 times from outside and got very nervous about being in hospital. You hear of people catching covid in hospitals more and more these days and for the first time ever I felt scared and vulnerable.
I told the doctor at about 1.30pm that the pain had gone and I wanted to go home but she still wanted to rule out a clot. She was waiting for the CT results and if they were inconclusive she wanted to do another chest specific CT scan. This was just more delays in my mind but I understood.
The next hour was a mental battle with my anxiety levels rocketing. I wanted to get out of the hospital and go home. For my mental well being the hospital was no longer a place I wanted to be.
I first mentioned discharging myself at about 2.30pm and my doctor was nowhere to me seen. I was so anxious, and alone. I had no pain, I was blocking a room and I could hear it had got a lot busier outside with staff struggling to find space for new patients. I felt like I should not be there anymore.
To her credit the doctor completely understood my predicament but did strongly reiterate that a missed blot clot could be fatal. If I was still in pain there would be no question, I’d stay as long as needed but with no pain, chest x ray and blood tests clear I just wanted to go home.
At 3.20pm she came to me with a handwritten “discharge” note for me to sign stating I was aware of the consequences by choosing to leave. She made me promise to come back at the slightest sign of symptoms again. I was almost in tears signing that form at the relief to go home.
It feels silly now thinking about how worked up I got in such a short space of time but when you’re just waiting with nothing to do the mind is a powerful weapon.
Since I got home I discovered I can bring the pain/ache back by lying flat on my back or on my left slightly. Turn to the right and it goes away completely. I now think I’ve pulled a muscle in my chest by over doing things over the weekend and lifting something awkwardly.
I’m confident my pain today is not serious as I’ve had a chest X-ray and blood tests that haven’t shown anything and getting checked out was the right thing to do but in hindsight I’d think twice before going back into a&e in a pandemic where hospitals are swamped.
I’d think more carefully about everything that’s happened over previous days rather than just “I have a new pain, panic.”
I had my CT scan yesterday. I was hoping for some instant relief but knowing that the hospitals are so busy due to Covid and that it could still be another couple of weeks before I get my results has dampened the relief somewhat.
However for the first time in over a week I woke up today and didn’t feel the need to just yank the duvet back over my head. In fact I actually got on with some work. Arguably more than I achieved all of last week in just a couple of hours this morning.
Somewhat ironic when I was signed off work for another month from Monday.
I really hope I’m coming out of this “fug” that has enveloped me for the last few weeks and has been very obvious to anyone outside looking when viewing my blog posts. The mood has gone down and kept going.
I had another visit from one of the Phyllis Tuckwell nurses yesterday and completed another wellness questionnaire and there were no surprises that it shows I’m pretty down at the moment.
I’m going to contact the counselling team at the hospital next week to see if talking to a stranger will make my problems disappear.
I’ve now made it to 6pm without a nap today and while I’m very tired and will have an early night I see that as a small victory as that’s not happened for a few weeks either.
And as I was awake this afternoon I had one of these. First time in about 20 years.
What a shitty week. I hope the rest of 2021 gets better.
I’ve had a week of work where I’ve basically achieved nothing as I just cannot focus and concentrate properly. I feel really guilty as I was hoping, rather naively it seems, to be able to get back into the swing of things quickly.
I’ve seen 2-4am at least four times in the last 7 days as my mind is so busy worrying about treatment and what’s happening (or not happening) that it’s screwing with my sleep.
And to round off the week I’ve had full on flu like symptoms and aches all over following my treatment yesterday. The first single Nivolumab treatment knocked me for six today.
I had a temperature, I had to reach for the breakthrough pain relief for the first time since switching to Oxycodone to try and deal with everything aching. I slept from 3pm to 10pm (and am now wide awake)
I had started the ball rolling to try and get a CT scan done privately then out of the blue I got a call today from Frimley Park hospital radiology (NHS) wanting to know if I was ok for a CT scan next Wednesday. Er.. yes!
So while I’m desperate to know if my treatment is working I now have even more “scanxiety” knowing that I will find out next week.
So I’m really hoping that “things can only get better” now.
It all got too much for me this evening and the pressures of not knowing, trying to work, worrying about treatment, future plans all boiled over resulting with me in a “small” heap.
I’ve not had anything particularly difficult to do at work in the last 2 days but I’ve struggled to achieve anything yet, my mind is all over the place and I cannot focus so even the simplest of tasks are taking a long time. The biggest worry is if my treatment is working and this is taking over my whole being currently. I have to know, I need to know. Try as I might to focus on anything else and without fail my mind will come back to this one subject.
I’ve had a headache all day (first in months!) and this sapped my energy. I’ve had a call with registrar for Professor Pandha this afternoon who confirmed we’re carrying on as planned into the “maintenance” stage of treatment on Thursday. Again I cannot just accept it’s working. What if it’s not! Why is my life saving not available to book on the NHS? I hate Covid.
She asked how I was feeling. Physically I’m “ok”, I have aches in my chest still during deep breaths and my back and legs are really achy but nothing major, so physically I’m much better than I was in September. But mentally?! thats a different story. Mentally I think I need a tight fitting jacket and a nice quiet room with padded walls.
I’m proceeding with a request to get my CT scan done privately on Bupa. They’ve confirmed it will be covered but there’s all sorts of reasons this isn’t a great idea. Not least being that in an ideal world my subsequent scans would come from the same machine to ensure consistent results. I don’t care. £100 Bupa excess? are you joking? I’d pay ten times that if I could get a scan and ease this worry.
Assuming I get the go ahead to get a private scan it’s still not likely to happen for a week or so so this lingering worry isn’t going anywhere soon. It is physically draining.
People try to sympathise and “understand” what I must be feeling and I get that but there’s no way they can really understand how I feel. My life is at risk and I don’t know if my treatment is working.
Think about that. You had a target that by the end of 2020 you’ll know if everything you’ve done, all the pain and aches and time and treatment are working or not. But for no fault of yours or anyone else’s (well apart from the “covidiots” not wearing masks or ignoring the rules) you cannot find out. Not only that but no one knows when you will be able to find out. This isn’t a case of a new car being delayed, a holiday being postponed. This is life and death.
Maybe I’m being overly dramatic but its how I feel.
The headache put me in a dark room this evening, I’ve not been hungry due to excessive worry and I think just the lack of energy, tiredness, aching, feeling particularly down got too much and I needed to let it all out. I hate crying but I’ve done so much the last few months it seems normal to me now. I don’t like people seeing my cry as I feel so vulnerable (I don’t seem to have a problem writing about it though!)
I’m tired of the stress and would do anything to just be normal old Steve again. Anything!
4th January 2021. It’s nearly 4 months since I discovered I have kidney cancer. 4 months where the world has just been a blur, a rollercoaster of emotions and feelings and pain and tears and plans and hope and medication and appointments and phone calls.
We’re now into a new year and I need to accept this is the new norm now. My cancer cannot be cured but right now it is something I can live with, with just a few reminders that it’s there.
I started back at work today, albeit in a much reduced capacity for now, hopefully I will be able to get back up to full speed in the not to distant future but I won’t lie, the last few days before starting back have had my anxiety at full alert. Terrified of what’s changed, can I still work and do my job, what if I can’t?, can I stay awake? am I still useful?
On top of this, I still haven’t had a CT scan so still do not know if the immunotherapy is working. We’re continuing treatment as if it is, with a blood test today and a consult tomorrow but without knowing if it’s working what can the consult possibly tell me. If it’s not working then we’re wasting time by not switching to a new treatment. I will have the first of the single, monthly immunotherapy treatments on Thursday afternoon.
I just want to know if it’s working or not. My life literally depends on it.
Anxiety is my biggest issue right now, it’s affecting my sleep, my appetite, my concentration. Work, treatment, health, all add up. I’m having to dig deep into my coping techniques and sometimes they work, other times they don’t.
If people stopped being so stupid and selfish then we wouldn’t be having this rise in Covid numbers again and I could at least lose one of the reasons for anxiety. I see pictures on social media of friends, intelligent friends, completely ignoring social distancing. I want to scream at them “you might be killing me!” .. but what would be the point.
I didn’t think I was going to enjoy New Years Eve 2020, but surrounded by my most important people, I had a lovely evening. We played some silly games, I had a couple of small beers and we watched the fireworks and drone show from London on TV.
I did find myself strangely emotional watching the drone show and fireworks, they caught the moment and caught me off guard when reviewing 2020 and looking forward to 2021 and I found myself crying quietly amongst the noise and flashing lights from the TV. The first tears I’ve shed since before Christmas Day which is surprising.
I know it’s been a tough year for a lot of people, with Covid making all the headlines and affecting everyone. Some falling ill, some losing their livelihoods, some struggling with mental health while others just doing their best to get by. I’ve seen some stories of friends overcoming all sorts of obstacles that life has thrown at them as well as facing challenges just as difficult as me.
My Cancer diagnosis in September has obviously been my personal focus for the last 4 months and there have been days I’ve been very ill and days where you couldn’t tell I was ill. However through it all I have been surrounded by amazing love and support from Katie, Kira and Rhian as well as family and close friends. I’ve also been supported by Phyllis Tuckwell Hospice, the staff at St Lukes and Frimley Park. Just as importantly my employer and my Boss has been incredibly supportive with no pressure on me to do anything other the look after number one.
Next week I plan to start back at work in some form although I’m not kidding myself that it will be a few weeks before I can get near to “normal”, if that even exists any more.
I also have the first of my “single” immunotherapy treatments. Blood test on Monday, consult with my oncologist on Tuesday and hopefully (it’s not been confirmed yet), treatment on Thursday.
I’ve tried really hard over Christmas to remain positive and upbeat, take time to chill when I need it but not to get wrapped up in self pity. I think I’ve succeeded as we’ve had a nice time. It’s hard when we can’t get out and socialise and the 4 walls start closing in but we’ve all been patient with each other and made the most of what we have. A few times I’ve felt close to tears but then take a step back and look at everything I have to be thankful for.
I’m still here, I feel ok, I have amazing support, a beautiful family, I’m financially secure. I can’t really ask for more than that.
I have lots to look forward to in 2021 and lets face it it’s going to be hard to not be better than 2020. I want to get back to work to keep my mind busy, I want to find out that the treatment has been stopping the cancer from growing, I want to ride my motorbike, I want to see friends start their families, I want to drive my Tesla, I want to see the back of Covid and the return to normal daily life.
Most of all I want to be able to be fit and healthy enough to enjoy the coming year.
I have one resolution for 2021. I want to be here to make resolutions for 2022.
