lauracranna

[lauracranna]

Out Damned Spot...

Day 135 of Imatinib and we now know that it is working!

The latest scan revealed that four of the tumours have disappeared and just one remains. This is almost the best news we could have heard. So what now? Well, firstly, my oncologist very kindly reduced the dosage that I am taking as I, quite frankly, was not coping on 400mg. Since I've been on the lower dosage I've noticed: my energy levels increase slightly, a reduction in sickness/heaving and a generally elevated mood. However, there are still plenty of side effects to contend with. The main two issues at the moment are hair loss and dry skin.

During my first round of cancer in 2016, the hair loss was much worse. I had very clear bald patches and eventually I decided to shave it all off and wear a wig. This time, we're not at that stage yet but I fear it may be looming if things don't improve. To cover the thinning I'm trying to cleverly disguise it with lots of back combing, side parts and the use of little girl clips. People that I have mentioned it to have been very lovely and said that they can't tell and I really appreciate that (maybe, they really can't) but I can see the difference. I'm not saying that I bothers me so much that it's bringing me down but I am really self-conscious about it. To add to this, the hair is not just thinning but responding to the chemo by curling, or more accurately, frizzing. It is resisting the straighteners and kinking up at the mere sniff of moisture or wind. It basically looks a state most of the time. My current solution has been to tie it up at work on the really bad days but I hate that as I can't hide my face when I do that...

The dry skin is less problematic as I can hide it but I am going through a mountain of moisturiser. Problem spots are elbows and legs/feet. Tights are no longer friendly so I'm wearing trousers to work more frequently. You do not want me do describe the snow scene that occurs when I take off my tights after a full day at work. My skin is also much more sensitive than usual. I had an itchy leg during the night over a month ago so I gave it a scratch. Keep in mind that I have no nails as another side effect is weak nails that just tear off randomly. Anyway, the next morning, I looked like I had been clawed by a bear. The marks have faded but you can still see them. Add this to the bruises that appear if I just brush against something, and certain parts of my body make me look like I've been six rounds with Muhammed Ali.

It's easy to get excited at this point as all signs point to remission at the next scan in May or the one in August. But I have to remain grounded. My brother's advice was always to manage expectations so as to avoid disappointment. So I will remain optimistic but realistic. This is an incurable cancer (unless they discover a new wonder treatment) so I have to remember that the best I get is the Imatinib shrinking the tumours to an undetectable size and keeping them that way for as long as possible. In the meantime, I am "screwing my courage to the sticking place" and enjoying life as much as I can. Hubby and I are flying out to Portugal in 4 days for some much needed rest and relaxation and we've just had a lovely weekend in a lodge with some friends.

I just wanted to end today's blog with some general advice for anyone reading this who is supporting a loved one with cancer. It's really hard to know what to say or do but there are two things that you can always do and I know will be appreciated: hugs and listening. Don't stop hugging them. And don't stop listening.

[lauracranna]

Hoping for the best, prepared for the worst and unsurprised by anything in between...

Day 49 of Imatinib. Hurtling towards the first CT scan which will reveal if this particular form of chemotherapy is working. How am I feeling? Well, it's difficult to answer that question. There are two sets of answers: the physical and the emotional. I'll start with the physical.

I haven't had the best start to treatment. Within a couple of days of taking the first tablet I caught that insanely horrific cold/flu/not covid that the world seems to have had over Christmas. I had a list of symptoms longer than my arm, starting with headaches, sore throat, cough and nausea and these have lasted until just a couple of days ago. Except for the nausea. That, I now suspect, is the side-effect of the Imatinib. It's mostly manageable as the anti-sickness tablets kick in quite quickly but it does mean that I have to spend around 30 minutes each morning dry heaving over the toilet or the sink. A few days ago I made the mistake of believing it was over and set off for work, only to find myself heaving in the car. Luckily, I was still on the estate and only doing about 20 mph. I just turned around and came home for a while until it settled. It did make me late for work though (late my by standards, as I like to be in work by a certain time and then anxiety kicks in if I'm not there when I want to be.) The other issue with the morning heaving, is that it is very similar to morning sickness. No big deal unless you're still coming to terms with the fact that you're baby making days are over. Every heave is a cruel reminder that I'll never be heaving again for positive reasons.

Which brings me to my emotional state. I'm not really as sure how to describe it. Sometimes I feel really positive, determined and completely certain that I'm going to get some good news in February. Then I have moments (some of them very long) where I just want to curl up in bed and never leave. Sleep is evasive a lot of the time. I either fall asleep really quickly because I'm exhausted but then wake up at around 3am with doom thoughts on my mind or I lie awake until around 3am with doom thoughts and then manage around 3 hours of broken sleep until the alarm goes off. Either way, I am mostly floating through the day at the minute, easily drifting off into daydreams, not really able to focus and finding myself frequently losing track of my sentence/using the wrong words for things. Not much of a problem unless you've got 30 students in front of you expecting you to know what you're talking about.

I've also become rather anti-social. It's not that I don't want to spend time with people - we had a lovely time with friends on New Year's Eve for example - I just find it difficult to communicate when I'm with people other than Iam. I've started to find small talk irritating and my mind just drifts back to cancer. I'm worried about bringing others into my doom thoughts so I'm opting for silence instead. I know I don't need to apologise for this - people keep telling me I'm doing great - but I can't help feeling bad for being miserable/ not myself. And then that just adds to the misery. So, if you ask me how I am, I might just give a simple "fine thanks" as a reply. Just know that I really appreciate you asking and I also appreciate anyone's efforts to talk to me about every day inane crap.

I'm not sure when the scan is but I know it will be within the next month or so. I'll blog again once I get the results. Keep everything crossed for shrinkage or complete obliteration.

[lauracranna]

To Share Or Not To Share

There is no rule book for cancer. No guidelines to tell you how you are supposed to feel or act. No list (God how I love a list!) of tasks to check off. But to me, there has never been a question of not sharing this ‘journey’ with the people in my life. How are people supposed to support you, show empathy and general kindness if they don’t know what you are going through? And let’s face it, I’ve always worn my heart on my sleeve so why should this be any different…

So I’ll use this blog as a place to inform you all of my progress, vent my frustrations and maybe help others who find themselves in this impossible situation because the fact is that we do not talk about cancer enough. Before my initial diagnosis in 2016, I had never even heard of my particular kind of cancer (GIST) and every single person I talked to about it outside of the medical profession had never heard of it either. I had no idea what I was dealing with.

The current situation is thus:

I have five tumours in my abdomen of varying sizes. The biggest is just over 2cm. The original singular gist was around 12cm. This recurrence is metastatic (more than one tumour) – never a word you want to hear when dealing with cancer – but the good news is that they are all in the same place and haven’t migrated to other parts of my body. Surgery is not possible so I’m being placed onto an oral chemotherapy drug called Imatinib. The aim of the drug is to prevent the tumours from growing/spreading further and, if I’m really lucky, shrink them into oblivion. My oncologist gave about an 80% chance of that happening. There is a chance though that one or more of the tumours will be resistant to the Imatinib and grow, in which case they would consider surgery on those stubborn clumps. There is also a chance that the Imatinib won’t work at all, in which case there are currently 4 other drugs that they could try to get it under control. She estimated that if the Imatinib is successful then, on average, it works for 3 years. When the tumours inevitably become resistant, it’s time to try the next drug.

Best case scenario is that the Imatinib works immediately and the next scan in 3 months shows that they have shrunk or disappeared. However, if this happens, I still have to take the drugs. For life. This is because what we do know about this rare cancer is that it is aggressive and while it may not always be big enough to show up on a CT scan it is always going to be there, lurking, even if it is just a microscopic cell. I really appreciate honesty and thankfully my oncologist does not sugar-coat anything – the word she used was “incurable” and whilst that word is terrifying I think in the long term it’s best to know this. Though she does remain otpimistic that I should be around for a “long time yet…”

So, this is where we’re at. This is what I’m trying to process. I’ll blog again after I’ve gathered my thoughts further.