Well this was the big chemo and gene testing day... I was both curious and nervous at the same time. I was also actually upbeat, but quite calm within myself. Go figure lol.
Mum and I headed across to Howden Centre early, to grab a cup of tea and to complete the genetics questionnaire. Trying to work out everyone on both sides of my extended family who may ever have had any type of cancer, how old they were when they were diagnosed, where they were treated and if / when they died was really quite taxing - especially when it went back to my great grandparents generation if possible!!!
Anyway, form duly completed (got to love a good bit of paperwork!), we headed to the genetics appointment. Randomly it was being held within the maternity unit at the hospital. I guess like most places of work, trying to book meeting / consultation rooms is at a premium, but I am definitely getting to see more departments of the hospital each time I visit 😀.
We were met by a Genetics Counsellor and trainee. They asked me what I understood of the referral, and were pleasantly surprised that I seemed to know so much.
(As an aside, why do people ask you what you know before they just explain stuff? Is it a test? Is it to save time? Is it a comfort factor for them to see how much they have to / are able to tell you? As another aside... they clearly don't know me, my research and 'need to know' everything tendencies lol.)
So we ran through the whole scenario, and what the whole process was for. Basically, given my type of cancer, and my age, I meet the criteria for being tested for specific genes. Compiled with my family history, they may look for additional genes with the whole purpose of establishing if there is any genetic mutation or distortion.
The reasons for doing so are many. First off, it may give a definitive reason as to why I developed my type of cancer. Supposedly I am too young to be have been in receipt of any potential environmental factors to have built up in my body to cause cancer, and they already know it is not hormonal. However, equally the tests may come back that getting cancer was just one of those random 'luck of the draw' things that happen in life.
Secondly, if anything does come back from the test, then it may impact on my cancer treatment plan. Thirdly, it may have potential implications for my family members.
Of course, the testing itself may come back as negative for anything. The counsellor was quite clear in saying that they only find a positive result in about 15% of cases. Most of the time the results are a distinct negative for any mutations, and in some cases they are inconclusive. What that means is that sometimes they can find altered genes, but don't actually know what is altered, or why, or what it does. If that turns out to be the case, they do not make any medical recommendations on my treatment plan.
The counsellor then asked how I would feel about certain aspects... effectively what they are going to be looking for is the BRCA 1, BRCA2 and RAD51 gene. These are genes which may show a pre-disposition to both breast and ovarian cancers.
I was quite upfront and said I had already researched the various possibilities, and aside from potentially ending up with a barbie-like body, I would opt for elective surgery to remove everything. This is on the basis that I never want to have to go through chemo again, I want to minimise the possibility of ever getting any other cancer, and I want to be able to live the rest of my life worried about the possibility of recurrence, or secondary cancers.
I was also honest and said that I was very pragmatic about these things, but in life as I am at work, I take a risk based approach to these types of thing. That means that if I ended up having any additional surgery, I was still hoping to be sliced, diced and sorted within the next 12 months.
Although mum did point out that clearly the results may still be negative, and the counsellor did agree that we were talking hypothetically, the counsellor also did say it was good to walk through all the possibilities now when I am well, of sound mind, and not having to make snap judgements when I am potentially under the sick feeling of chemo.
Don't get me wrong. I also know perfectly well she was also assessing if I was potentially loony, just after free body morphing operations free on the NHS, attention seeking, or indeed going to crumble at the first sign of trouble. Hopefully I am none of them. But who knows what she wrote on my notes afterwards...
Anyway... after all of this, we then did a family tree - which she drew out long hand on graph paper with various symbols - really fascinating to watch actually.... although throughout it I had to practically force her to take my completed questionnaire as she is clearly a visual person, rather that a form person lol 😜.
(I can swing both ways in that regards, so actually I am easy either way lol.)
The whole session was absolutely fascinating... aside from the fact I also learned my mum had been stabbed as a child! Will definitely return to THAT story at a later date!!!
After all of this chat, I was then formally asked if I wanted to proceed with the gene testing. Although I couldn't actually work out who wouldn't proceed at this point, I gave both my formal consent and a small vial of blood.
Interestingly, they have explained that looking for mutations is a bit like looking for a spelling mistake in the entire Bible, so I am not quite sure how this is all going to work out, but I guess she was trying to manage my expectations. Results will take up to 12 weeks and she will phone me directly with the results. (I am impatient and I don't want letters going astray in the post lol.). She then laughed and said if she had not contacted me by then, I should phone to chase her... but she just had a feeling I had already mentally scheduled the call in diary anyhow... see... she was getting to know me 😀😀😀.
After this session it was a quick bite to eat before chemo session - supposedly it's good to eat and drink before hand, partly in case you are sick, partly to help things circulate faster, and also fluid and warmth keeps your veins plump and easy to access 🤔.
Anyway, entering the chemo unit, I clearly caused confusion by shaving my head. They didn't recognise me lol. However after 5 mins, my lovely nurse came out to get me and take mum and I through to the lounge area.
It was actually really busy - more than the planned 5 in for treatment, so it was a bit of a squash. Once I got settled, I took iPad, colouring book, mints, water and tissues out, and mum sat beside me as my blood pressure, temp and weight were all checked. I got to reiterate my name, date of birth and address on multiple occasions, but that's because each drug has to be dispensed and cross checked - hats off to the NHS for the thoroughness though!
I have to say, the worst part was actually getting the cannula into my arm. I cried 😢.
My veins were really good and plump, but the cannula going into the vein over the boney part of my wrist was REALLY sore. There was no brave Linz at that point.
However, once it was in and taped into place, I calmed down and even got mum to take a picture to mark the big occasion. At this point after 10 mins I was already roasting hot, so the skull cap had to come off to let my temperature cool a little - the baldness thing really good for when I overheat!!!
(With hindsight my temperature had gone up with the whole fear / pain of cannula thing... but I will try get over that next time.)
Then my nurse came back with a tray full of LOTS of syringes. And I mean LOADS...
First off was a flush through for my veins ~ 5 mins
Second one was the steroids ~ 10 mins
Third one was anti sickness ~ 10 mins
Fourth one was chemo drug 1 - fluorouracil ~ 15 mins
Fifth one was chemo drug 2 - epirubicin ~ 25 mins
Sixth one was chemo drug 3 - cyclophosphamide ~ 20 mins
Seventh one was another flush through ~ 5 mins
Now in between these times, my nurse also had to deal with a couple of other patients who were having either trouble finding veins, or dealing with one poor man whose nose would not stop bleeding... but I have to say the whole nursing team are fantastic.
Also, between my mum sitting playing cards with me (I think she let me win a lot lol), getting a foot massage, chatting to the nurses and the lady next to me, actually the whole experience went by quite quickly. I do think I *may* have been the loudest patient they have had in that day, but I think I can say that everyone was kept amused with various shared jokes and anecdotes. (It was not that I ended up doing a stand up comedy act btw, even despite my theatrical leanings 😀😀😀.)
The chemo itself was not painful. Just weird sensations. My nurse was really good at taking me through each one as she was injecting it, and telling me what to expect.
So the chemo 1 drug made me go a bit flushed in the face initially but that passed after about a minute, the chemo 2 drug made me feel slightly dizzy and like I wanted to go to the toilet (it irritates the bladder and turns pee pink!), and the chemo 3 drug runs cold, and produces a horrible medically, metallic taste at the back of my nose / throat - quite unlike anything I have tasted / experienced before. But that's where the bags of mints came in handy 😀👌.
After the treatment had finished, I did the first thing everyone does... went to the loo. And yip, it was bright pink 😜.
I got a goodie bag of drug to take home with me - steroids and two types of anti sickness drugs, as well as a large box of laxative solution... it's a sexy combination, but hey, it's all going to be worth it in the end.
I actually felt great, so went off at a jaunty pace back to the car after wishing everyone a merry goodbye and thank you... indeed felt so good, I even persuaded mum to go via Marks and Sparks for some tasty food for me...
Into the evening, I also felt completely wired... that will be the steroid effect... but did mean I got to see many episodes of the Gilmore Girls.... aside from that... nothing much more to add from my first chemo experience... it wasn't as bad as I had prepared for, so long may that continue!
First one down... only 5 more to go 😀😀😀😀😀. Till next week peeps x
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