Cancer and coronavirus, part 2

Update late July 

Further blood tests and a chest xray are all clear. Static oxygen levels are around 95%, but dynamic ones can drop to 78/84%, after about 200m walking, then slowly rise to 88% at about a km. If I keep going (slowly!) then it will increase to 93%. I have no idea why, whether I'm supposed to walk through it or not. Cannot get any answers, and there is a certain amount of disbelief at the surgery that I even had covid, putting it down to anxiety. Yes, some for sure, that I cheated death for the second year running. They even had me wondering if I imagined it. But no, I definitely didn't, and they found a crackly chest at the only real checkup. Now they think it is post viral deconditioning. Again, it will be some but generally I beg to differ. Review in 12 weeks the letter said. I now hate phone appointments. Back to me to save me, somehow. Forget the medics they don't seem to be any use. Rant over!!!

Stay safe, you definitely don't want this, it doesn't want to go away.

Further update, end of August.

Oxygen levels would appear to be stabilizing, as in not getting below 90%, and 92% on exercise, 95%+/- 1% normally. On a bad day I rang 111 again, and got to speak with a doctor on the Covid team. Went through everything and he wrote a report for my GP. The result of this was an ECG and a 24hour trace. There was one incident, so am being referred to cardiology. Just what I need, NOT!!

Decided to challenge myself and do the 5km race for life in Sept. Haven't walked this far for months, to my disgust, but have been totally unable to.

School starts back next week, so it will be very interesting to see what happens, as haven't really been out anywhere since early March.

Stay safe out there!

Update, early October, nearly 7 months in.

School went ok, they have a good regime going. Very weird actually going out after so long! Main problem is the shortness of breath still. It also affects my voice, but at least the doctors can hear that on the phone!

Had an appointment to check for blood clots on the lungs at the hospital. Bloods, chest xray, but didn't get the CTPA. They are happy there are no clots, but at some point I will get a 72hr ECG trace. GP in the mean time has referred me to the respiratory team. There is now general agreement that I have "long covid".

From a cancer point of view, the last few months have seen a deja vue in that the chemo after effects suffered last year have reappeared. In the absence of any real info, my guess is that the covid has attacked my weak points, ie the chemo effects. But at the moment no one knows.

I managed the Race for Life round a local wood, 5km in a pathetic 1hr40. But I did it!!! Matched the sponsorship money to give to Macmillan.

Just be careful out there.

Hi, thanks for your update Gemmary and it sounds that you have made positive steps over the months.

As my granddaughter would say ‘pants’ about the ‘long COVID’ abd I can totally see how it would target your OST treatment weaknesses but let’s look for you to navigate this..... but doing the Race for Life... a high  from me.

Very encouraging that school has been ok, I just can’t imagine going back into an education environment during these crazy times.

Do take care and keep in contact x

Hi Gemmary, I absolutely love your spirit of determination and courage to help yourself.  You deal with the hurdles with such positive focus.  It is always such a pleasure to read of your progress and yes, I agree there are such parallels beween chemo and covid.  

1hr and 40m doing the race for life is phenomenal in my book, considering what you have been dealing with.  I really don't think I could have done it that quick!

Keep taking those steady steps of progress Gemmary, this is  so encouraging.

Take care and keep safe xxx

Mid November, 8 months in.

Got another government letter so grounded again. Counted up and with this, shielding and isolating for daughters 2 operations, I have been able to go out for 5 weeks since the beginning of March!  This last lockdown was starting to tell on me, now I know why.

So where am I at. I had the 72hr trace, but not the results yet, that could take a month to come through. Respiratory team want me to have an echo before they will see me, so waiting for that. Breathing is however improving slowly, and the last week or so, I have felt better than I have for ages. That will tempt fate! I am actually enjoying a medic free time, with no appointments (though some due) and it is really good!

Waves of fatigue still arrive, and it is interesting to note that when this happens my oxygen levels have dipped to low 90s . Which causes the other I have no idea. If I talk then my voice still gets affected so levels are still not right, but slow improvement. My heart seems to have mostly settled as well, as far as I can tell. Still get tired, but can walk better.

So am I cured of covid? Much as I would like to say yes, this beast always seems to have a sting in its tail, so I will reserve judgment. I am however pleased with how far I've come, generally by myself . Medics are starting to accept this is now long covid, including my GP, but they don't yet know how this virus affects people long term. Pity they couldn't help in March /April time, but I pulled through eventually but at what cost I'll have to wait and see.

I am even daring to think about looking forward, and wondering if I dare think about 2021. Having cheated on death the last 2 years running I am hopeful that I can have a year off, and start living again, rather than existing. Part of me thinks I'll have to wait for the test results, and I'm due a scan in Dec (if they still go ahead with the second wave) and part says do it. I'll let you know what happens!

So there is looking like there is life after covid. The journey has been very reminiscent of the cancer journey, except that you are totally on your own, as no one else has been there, and nothing is known.

Take care all.

This is a very positive update Gemmary, even though there are still some challenges, your perseverance in helping yourself is paying off.  Now you are able to look back at the hills and mountains you have climbed and see what you have achieved so far, this is so encouraging.

Yes, there are lots of similarities with cancer and covid but the differnce, as you say is this is a learning curve for the medics as well as the patient.  You are working your own way through alot, but going in the right direction where you can now begin to look forward and there is nothing wrong in that.  Keep doing what you are doing Gemmary and keep climbing those hills and mountains as you will notch up the milestones of achievement.  Well done to you!

Big ((Hugs)) xxx

Mid Dec, 9 months in, and a year since chemo finished.

Slow improvement. Trace came back clear. Respiratory team won't see me without an echo first, so still waiting. Got a short notice CT scan, awaiting results. It is the breathing that is the main issue, or should I say lack of breathing! But I am slowly coming to terms with this just in case it is my new normal, though I very much hope not, too many things to do! I have a cold at the moment and it is compromising my breathing much more than usual. 

Reflecting back over the year, cancer wise I have come a fair distance. Covid wise there is still a distance to go. Hopefully the breathing will improve, which will free me up to get back to my active life. 

Have a peaceful Christmas everyone, and here's hoping 2021 will be better for all. Stay safe

Good to hear from you and yes, let’s look for 2021 to bring more positive and encouraging news in every way.

Have as wonderful a Christmas as you can and look forward to 2021 x

Gemmary you have overcome an awful lot despite the challenges this past year has thrown at you.  Keep putting one steady foot in front of the other as you move in to 2021.  I find this so encouraging and inspiring.  Have a great Christmas even though a different one this year, and keep on keeping on.

(((Hugs))) xxx