Diagnosis

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.