3rd September 2009:
Just discovered this site.
I
found I had had cancer eight weeks ago, when I had a lump in my neck
removed (it was a secondary from a squamous cell carcinoma) and a left
neck dissection to remove the surrounding lymph nodes. I had been
feeling particularly well and fit this summer, so this news came as a
shock (doesn't it always, though?)
Apparently, head and neck
cancers often present with a lump in the neck, and the primary cancer
is most often in the mouth or throat. In my case, neither investigation
under general anaesthetic nor a CT scan showed up any primary in these
areas, so my diagnosis at the moment is officially 'unknown primary'.
The consultant surgeon told me that it is possible that my immune
system overwhelmed the primary and it is long gone - I had no idea that
this could happen. Alternatively, I may have an obscure primary,
possibly lurking in the nasopharynx (up behind my nose, I think it's
the area commonly known as sinuses). I had a PET scan at Cheltenham
yesterday and will be going back to clinic next week to be told the
results. After this my treatment plan can be finalised.
I have
been recommended to have 30 fractions of radiotherapy over six weeks,
with two doses of adjuvant chemotherapy (one at the start of treatment,
one half way through), to enhance the effectiveness of the
radiotherapy. I guess if the PET scan shows a hidden primary, this plan
will be altered.
At the moment I am feeling substantially
recovered from surgery. I'm still very numb and quite stiff around the
left side of my neck and left shoulder. But I feel I have almost
recovered my normal energy level. I've started cycling again this week
(very proud of this!). I started going to aqua-aerobics a couple of
times a week again about three weeks after surgery, when I was still
resting in bed every afternoon. My husband and I went back to ceilidh
dancing on Monday evening a couple of weeks ago, so it's slow but
steady progress.
I'm not yet back at work, which I had
originally thought I would be by now. I have realised that it is
pointless going back until I know the PET scan results, I wouldn't be
able to concentrate properly. Plus, it probably makes more sense to
rest and recuperate, still, in preparation for the radio and chemo
treatment. I will have to stay overnight in hospital for the chemo. and
I am expecting the whole treatment to make me exhausted again, once
it's underway. So I am concentrating on building up my strength again,
for now.
6th September 2009
Well,
at 9.00 pm on the evening I wrote the above, I had a telephone call
from the consultant surgeon to say he had had the PET scan result. It
was more or less clear but there was a suspicious area on the left of
my tongue. This had been biopsied before the neck dissection and come
back clear. It could be just that the area was still healing. But he
thought he should have another look and could I come in the following
day?
So, it was back in for another general anaesthetic and more
biopsies, but luckily did not have to stay in overnight. So now I am
just a bit tired, still, and nursing a sore throat again. He said again
there was nothing visible to the naked eye, but biopsies have been sent
off, they should hopefully have the results when I go to clinic on
Tuesday 8th Sept.
It hasn't stopped me going to the cinema, as
planned, with husband this afternoon - first time I've been out to
something like that since surgery - it was great! Bumped into an old
friend there who was treated for lymphoma a few years ago and he was
looking really well and is down to yearly check-ups. So good for morale
to hear these stories ....
8th September 2009
My diagnosis is no longer 'unknown primary' - they have found the
primary lurking in my left tonsil bed. Considering I only had the PET
scan 6 days ago, and the extra biopsies 4 days ago, I think the surgeon
has done some pretty impressive detective work on my behalf.
RT and chemo is still the recommended treatment, but now with the
RT focussed on eliminating the primary, as well as treating the neck
area. Treatment start put back a week, while they revise the treatment
plan. Just let me see off this sore throat, so I can feel like making
the most of feeling fairly fit, again!
20th September 2009
Now due to start RT this Tuesday 22nd September, as a day patient; then going in overnight on Thursday for Cisplatin to be given. Hoping to be out again Friday afternoon, as we're due to take our son to Aberystwyth to start university there.
Wish I could fast-forward to the treatment being over with, but alas! the only way is through it.
I have been feeling very frightened about the treatment plan, afraid that I will get very ill and, if so, that I will become depressed and feel like just giving up. People on this site have been incredibly supportive and encouraging. And I have wonderfuul support from my family and friends. But nevertheless, I have been dreading what is to come. Today I have finally been able to visualise the second half of my treatment as a journey - I can see a path leading up into the mountains. I know I have to take this path and I have been preparing for what might come, as best I can. And today, I have finally felt confident that I can do it. I know that other people have trodden this path and they are waiting at the far end of it for me, encouraging me and giving me the strength to follow them. I know I face the unknown and it may be hard and I may feel despair at times, but I also know I am as strong as the next person if I have to be. And I will do this.
5th May 2010
Sorry not to have been able to keep up this blog!
I started treatment and even got to take our son up to university and see him settled in (despite vomiting so uncontrollably overnight that I ended up with a brief admission to hospital in Aberystwyth).
However, then became very tired, with increasing nausea, vomiting, pain on eating, morphine, even more nausea and vomiting. By the end of radiotherapy treatment I was really ill and just got worse, not better. Two emergency admissions to hospital, one just before Christmas 2009 (acute renal failure), the other in January 2010, when they finally diagnosed severe malnutrition. Once they had given me various supplements, blood, a high protein/high calorie diet I finally started to improve, from the middle of February onwards.
It was very frightening, at times. Looking back, I don't understand why it took so long for the oncologist to realised what the problem was and start treatment.
Anyway, I am now back to virtually normal levels of energy, even though eating is still a challenge (painful mouth/throat, not enough salive, taste changes). I'm still more than 2 stone lighter, so that is the silver lining - I've been told I am an elegant shape! which is not something people said about me before.
The really good news is that I have just started back on a graduated return to work, after 9 months absence. And the love and support I have had from friends, colleagues and family has been way beyond anything I could have imagined and is what carried me through a very grim winter.
So, this is a message of hope to everyone who visits,
with love,
Bronwen x
