So much has happened over the past couple of months and I
really wanted to share it, for a few reasons; I want to have a concrete record
of what’s happened in case I need it later but I also felt like it would help
me to have somewhere to vent.
I’ll start at the beginning, my Dad has leukaemia and has
had for several years (since 2012), his leukaemia- CLL was a chronic form that
people can live with for years. Around 12 weeks ago he told me he’d had some
swelling in his leg and was having a scan for it but was waiting for the scan
to come through. He told me he’d been waiting for several weeks and asked if
this was normal, I said I thought it probably was. I thought no more of it, thinking it would be something quite minor and not thinking there'd be a relationship to the CLL. A few weeks following that
he phoned me after not being in touch very much and told me that the doctor was
concerned that the leukaemia within the lymph node in his leg (where the swelling
had been) had become active and that he might need some chemotherapy for it*. This
set alarm bells ringing obviously and I became quite frightened. I arranged to travel
home to see him that weekend but couldn’t as horrendously that same weekend my
partner suffered a pulmonary embolism and was also very ill and couldn’t be
left (I spoke about this in a previous post).
The weekend after this I went home to see him. I remember him
telling me on the phone that he was in the cancer centre but nothing prepared
me for how physically sick I would feel walking into that building and seeing
the words above the door. I felt even more sick as I walked up the stairs and
went through the waiting area before the ward entrance and saw a sign saying “this
is a chemotherapy ward and therefore is not suitable for children”. I burst
out crying and it took me quite a while to compose myself before I went in. He was
in a ward with 3 other men but he seemed so well that I felt far more at ease
having seen him and relaxed slightly. He still looked the same, he didn’t look
like ‘a cancer patient’, though his leg was very very swollen (twice the size
of the other one). I started to try to reassure myself that everything would be
ok.
In the meantime I had to go home and tell my younger sister
who was at this point relatively unaware about what was happening, that there
had been developments. One of the hardest conversations of my life, she cried
and cried and cried and we both cried together, then we composed ourselves and
went to the cinema to watch pitch perfect two and almost pretended that none of
it was happening. We went to the hospital together the following night and I think
she felt reassured to see that he was better than he sounded, though she too
suffered the same reaction on going into the building.
At this point they told dad that he could start going home
during the daytime (as keeping him out of hospital minimised the risk of
infection) but staying there in the evening as this would enable him to be
monitored and have all the appropriate tests.
Very soon after this he was given a colonoscopy and they
discovered some adenocarcinoma in the rectum. They did not think this was
related to the lymph node but it was clear he needed further tests. He was also given a bronchoscopy and we had to
wait slightly longer for these results.
A week or so later they confirmed that the cancer they had
found in the lymph node in his groin was a carcinoma and not leukaemia and
decided to start radiotherapy. We were also given a date to see he consultant
to decide how he would move forward with treatment.
Around this time I asked his haematologist if he
could explain a bit more to me about what was going on, he asked dad if it was
ok if he spoke with me privately rather than doing it in the ward. Dad said it
was fine so we went into a little side room. In there the news was bad; they
thought, but weren’t sure that the CLL was active. They knew there was cancer
elsewhere in the body but were not sure of the extent to which it had spread. They
needed more information about where in the body it was, whether it had spread
both above and below the diaphragm and so forth. His manner was gentle and kind
but the facts were bleak and hard to get optimistic about: “I would not be so
unkind as to give you any false hope at this stage”, “his situation is complex
and serious”, “treatment options may be limited”.
The date to meet with the consultant came. I knew instantly
it was bad news, we were led into a room with the consultant, two nurses (one
of whom was a palliative care nurse) and a box of tissues sat on the table. The
news was bad; he confirmed that there was cancer elsewhere in the body and
there was prominence in the lymph nodes in his chest, neck and stomach as the primary
cancer in his rectum had metastasized to other areas in the body. He proposed
radiotherapy (which had already started) for which there was a 50:50 chance of
success, as well as chemotherapy for which there was a 60:40 chance of success.
He advised there was no chance of a cure and that treatment was palliative
only. He told us that even if the radiotherapy did work at reducing the cancer
the leg swelling might never reduce. I asked about prognosis, he would (could) not answer though made it clear that the outlook wasn't good. We were assigned a palliative care nurse
and sent on our way.
*Apparently after not receiving a scan for his leg he went back to the GP who informed him that they had in fact forgotten to send out the letter requesting a scan. they then took one look at his leg and sent him straight to A&E.
