It’s happened twice now so I don’t think it’s a coincidence but any sort of physical exertion is wiping me out currently. Just over 10 days out from surgery now.
I’ve done a couple of walks now and both have ended with me feeling sick and like my insides have been juggled around. It’s odd as I feel absolutely fine before I start
Apart from that, the only other pain I still have is my right arm. It still looks and feels like it’s been through a mangle and I’d like to know exactly what was done to it during my operation to make it hurt so much. I’m still dosing up in pain meds because it hurts. A constant ache right in the centre of my forearm. If I twist or pull it then god help me it hurts!
Generally though I feel much better than I thought I would. I just want to get back to being able to walk without subsequent discomfort.
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 can believe my month is up and my next treatment is here again next week.
The last few weeks have been really hard both physically and mentally and this has been obvious with some of my recent posts. Mostly this is down to everything aching and me generally feeling tired again. Continuous Aches and pains are really tiring and not great for my mental health.
I got a bit down at the end of last week when I found my fitness had taken another hit and I struggled to walk a mile. Another walk on Sunday in the snow nearly finished me. It was only a couple of miles. It was a little easier on Monday., the sunshine helped.
One thing I noticed is the the cold air burns my lungs. Apparently while the tumours may have shrunk/disappeared they will have left scar tissue and this will cause some of the aches and pains I still feel in my chest.
This week has been a bit odd with some positives. I’ve been sleeping really well for the first time in ages although I do think this is due to me taking a 10ml dose of liquid oxycodone about an hour before bed. Whether this makes me sleepy or just stops the aches in my legs and back from keeping me awake I don’t know. But I’ll take it. That’s the only time I take it.
I’ve had confirmation that the fluid in my lungs is not at a level that needs to be treated and will probably be absorbed naturally. I still have to think to breathe deeply. It’s not a natural action yet.
I was also given the ok to get my Covid vaccination and had the first part of the Astra Zeneca vaccine this morning. This was after my GP finally added me to the Clinically Extremely Vulnerable list earlier in the week.
Generally I feel a bit of a spare part at the moment. I’m not doing much, tired all the time and feel like I’m just getting in the way. I want to spend the next couple of week really trying to build up my activity levels. Not just going out for walks and exercise but using my brain, thinking about things and trying to get back to normal. Or at least the new normal.
I’ve been reminded a few times now that while the CT results are great and show massive improvements. I still have Kidney cancer. Albeit much smaller
I’m writing this more for my own benefit than anything and just to keep me grounded but I still have aches in my chest when I breath deeply, I’m still very tired all the time and I still ache pretty much everywhere. I still take a high dose of pain medication every day just to get by and occasionally even more to deal with small amounts of breakthrough pain.
None of this suddenly stops just because I’ve had a great response to the immunotherapy. It will still take time to recover and improve. This is evident by the fact I’ve not really had the energy to get out for any walks in the last couple of weeks so when I went for a short walk on Tuesday I was suprised how hard it was.
I went for a slightly longer walk today and if I’m honest it nearly finished me. 1.5 miles, that was all, and all flat too but my energy levels, fitness levels and lung capacity have reduced drastically.
It will be a long and slow road to try and get back to pre-cancer diagnosis levels of fitness, if thats even possible. My mind is willing but the body is sadly lagging.
Before I get there there’s the small matter of whether I can get a Covid vaccine as not much is known how it reacts with immunotherapy. I’m in the “clinically vulnerable” group so should be eligible.
Also the not too insignificant matter of a potential kidney removal. Yikes!
But to finish on a positive note, the news I got in September when I was first diagnosed was devastating and never did we think the tumours could shrink so much in such a short space of time. Could they even disappear completely? For good? Is that a wish too far?
I was told at the start that my cancer was incurable and would be something I live with for the rest of my life. I hope that the coming months shows me what that might look like.
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’ve been very aware of a slow increase in aches in my chest over the last couple of weeks and I’ve done the best I can to not assume the worst but it’s very hard not to.
The last couple days I’ve had an ache on my sides when I lie on either side. Nothing sharp or severe, just something that wasn’t there before. Today I have a slight sharper pain, like a soft pinch at the front lower part of my chest when breathing in deeply.
It’s uncomfortable enough that I’ve had to have a dose of liquid oxycodone for breakthrough pain.
I’m trying to tell myself it’s just my lungs not being used to being fully inflated but I know deep down it’s probably something I should get checked out.
But I’m scared to.
What if it’s the start of the next stage of my illness? But equally what if it’s something simple than can be easily treated? I don’t like hospitals and my last two a&e visits ended with being admitted and that’s the last thing I want.
I will, apprehensively reach out to the oncology team tomorrow but part of me just wants to ignore it in the hope it will go away. That’s Men for you I guess.
Surprisingly I do get periods where I forget I have cancer then I get annoying reminders like this. This is living with cancer, I’m still new to it but doing my best.
For the last week or so I’ve been noticing some aching when breathing in. When I focus on it it seems to be an ache at the fullest part of the in breath.
It feels like my lungs have shrunk and are protesting at being asked to fully expand. It’s more like a muscle ache than a sharp pain. It’s also worse first thing in the morning.
When I relax and focus I can see I’m not taking full breaths. Almost like subconsciously my body knows it might hurt if I do, so stops. I guess like any part of the body if you don’t use the full range of motion regularly then when you try to extend that motion your body will ache.
So I’m really focusing on breathing exercises and 3 or 4 times a day making sure to take some really deep breaths for a few minutes. It seems there are gadgets to help with this now. I’ve asked my physio if these are worth investing in as they seem quite expensive.
I’m obviously hoping it’s just conditioning and exercise and not a sign of progressing illness in my lungs and will continue with that assumption until I know otherwise.
More fresh air and walking is on the cards and I’ve had a great response from friends wanting to accompany me. Who knows I may even get out on my bike before too long.
I finally did it and spoke to one of the nurses at Phyllis Tuckwell.
After a day of the worst vivid dreams so far and a bit of dizziness when trying to sleep (think room spinning when drunk) coupled with some nausea and some creeping breakthrough pain for the first time in a few months I finally had to admit something has to change.
Luckily she phoned me first and forced my hand but agreed that it’s likely my kidney isn’t excreting the morphine (whatever that means) properly.
I’m going to be swapped to something that’s twice as potent as morphine, but I’ll have the same equivalent dose. It’s also supposed to have less chemicals and be tolerated by the body better than morphine. I think she said it was Oxycodone.
I also questioned why I’m starting to get some breakthrough pain now, even though it’s minor. I was told it’s likely just “things progressing”. Not sure what that means but it’s worrying.
I’ve also written to one of the nurses who works with Professor Pandha to query why removing my kidney was dismissed right at the start. I never really understood but just went with what I was told.
I’ve heard of a couple of people with the same presentation as me, on the same immunotherapy now but they had kidneys removed right at the start and are having great results. Obviously I don’t know my results yet but it sparked a curiosity in me why it wasn’t an option. I’m someone who needs details and facts.
That’s how I feel so far this week. I wake up most mornings with a croaky or non existent voice. Ready for a good nights sleep even though I’ve just woken up. But also creeping in this week is worry. I wake up then start to worry about the treatment. Is it working?
I’m hyper vigilant over niggles, pains or anything different in my body so assume anything unusual means the treatment can’t be working. I’ve been getting small amounts of chest pain first thing so that must mean it’s not working. It couldn’t be anything else!
I had my bloods taken yesterday as usual for treatment week and this was the first jab that really hurt and gave me a small haematoma on the back of my hand. A sure sign the treatment isn’t working! Despite the fact it had gone after a few hours I’m looking any anything and seeing it as a sign.
The truth is that it is still going to be six weeks before we find out whether immunotherapy has been successful and I think this worry could get out of control if I don’t check it and acknowledge it now. the last thing I want is to have this as all I think about, especially over Christmas and New Year.
It’s a viscous circle. I can’t do much because of the fatigue and the mind has time to rest and wander. This is when the worry peeps over the wall. I need to keep busy to keep my mind busy and stop it wandering. I still haven’t found that balance yet.
