21/08/20
Hi,
I have recently been diagnosed with GrayZone Lymphoma and am currently waiting to start Cycle #2 of treatment. I am asthmatic and had a cough from Christmas which would not clear by steroids or antibiotics, and my GP then scheduled an X-Ray, which raised further questions and then a CT -Scan was booked. I also had a constant swollen purplish face from mid-March, just as lock down began.
The morning after the CT-Scan, at 09:15, I received a phone call from the GP , and the pause button on my life was pressed. The call started with “I have news and it's not great…” He then told me that I had a significant lump inside my chest, confirmed by the CT scan.
The lump initially was roughly 7cm x 7cm x 8 cm and is impinging on both my airway (hence the cough that would not clear) and also on the main vein coming down from the head, the SVC, creating a back pressure, and causing the swollen and red/purple face - “Balloon face”
That was twelve weeks ago, and coincidentally, I also finished working that day.
Initially I was focused on being out of work, as this was shaping up to be a significant period of absence. I had never been out of work for any length of time before, and I kept thinking should I try to go in for a few days here and there. It took about six weeks to get my head around the fact that the exhaustion from lack of sleep meant that I was just not fit for seven hours a day in front of a computer, never mind a five day week.
From the initial chat with my GP, it then took a further eight frustrating weeks and three biopsies to classify the lump, due to Grayzone Lymphoma being quite rare [“it has features intermediate between classical Hodgkin lymphoma and diffuse large B-cell lymphoma (DLBCL), but cannot be assigned specifically to either type”-Google].
Our first meeting at the Cancer Centre with the consultant and his registrar, was very positive and we were told that they expect this to be fully curative, and I will get back to my life, again It will be a roller coaster ride, though. Great news.
Once the Lymphoma was identified, I was brought in for cycle #1 of the R-EPOCH treatment within a week, and have nothing but praise for the level of care from the Cancer team and everyone working on the ward. Each treatment cycle is five days of treatment via IV drip (spread over 6-7 days), and then three weeks or so at home, before the next cycle starts.There are typically 6-8 cycles of treatment.
Cycle 1 of the treatment went well and at the end of the first week at home, my wife and I joked that I may be in some placebo group, as nothing had changed yet.
During Week 2 at home, I then developed horrible tongue blisters and multiple mouth ulcers which were very painful throughout that week. The upside of it was a license to eat lots of custard or ice cream! I rang the Haematology helpline number for advice and was approved to use Difflam oral spray, and Oragel, which made such a difference.
My mouth cleared up overnight on the Friday, and immediately my asthma cough became more pronounced and sleep became very intermittent again throughout Week 3 at home. We had invested in shaped pillows to mimic sleeping sitting upright (like in a hospital bed), and this did not help. Exhaustion during the day became more evident. I snore like a chainsaw and would fall asleep in front of the TV, only to be woken and chased away by the kids.
Lesson of the week: - I should have rang the helpline number to inform them, and they may have issued an antibiotic earlier.
However, i didn't make the call, and came into the hospital Monday week ago for cycle #2 and a standard X-ray prior to treatment starting showed something, which was later identified as an infection. I also developed a blood infection from the PICC line.
The result of this is that last Thursday I had a severe rigour episode, and am now on a long run of strong antibiotics via IV twice a day, to completely eradicate the bacteria. Cycle 2 is therefore on hold for at least another 10 days.
I am not complaining though, as I am clearly in the right place to be looked after, here on the ward. It will keep me away from the kids for roughly a month in total, though, which I am finding hard. The kids seem absolutely fine, it seems. Technology and facetime conversations have been priceless for keeping in touch with the kids and the wider family.
Prior to all this, I was diagnosed as Type 2 Diabetic 8 years ago (pill controlled) and have had mild Asthma my entire life. Over the last 4 years I have become a keen (but slow) runner which has helped me lose 3 stone over recent years, and also helps my Diabetes and Asthma management and my mood. I have completed one marathon in 2017, and trained for two others since. I believe I am in the best shape of my life to fight this.
My immediate family is my awesome wife, two boys (21 and 11) and twin girls (9). Never a dull or quiet day at home, and my heart goes out to my wife who has to do it all while I am in hospital. The youngest three have been told I have a very bad chest infection, and the hair loss is explained as either I am getting old, like grandad, or it's Alopecia. We haven't told them the full story as yet.
They have found the humour in my “condition” and I have recently been called Shaun Ryder (from Celebrity Gogglebox or Happy Mondays fame, spending on your age) or just “Chrome Dome”. It's amazing how easy they adapt, even in these strange times.
Family, friends, and my bosses have all been brilliant and supportive throughout, making this all easier to deal with. The constant message to anyone i tell is that I am living with Cancer, not dying from it.
To echo another's blog, it has not been as bad as my wife and I had feared...so far.
