Weeks 17, 18 and 19: Thursday 16 March - Wednesday 05 April 2017
Ok... I am just going to apologise in advance that this is probably going to be a long, long blog entry. I have not written for 3 weeks, as to be quite blunt, there has been a lot going on, and I needed time to process stuff, and equally, I didn't want to make public announcements until I had told specific stuff to my family.
I write this on a Saturday morning, whilst hubby is sleeping off what will be sure to be a momentous hangover in the the other room. Before anyone judges him unkindly... I have actively encouraged him to maintain his social life whilst I am off sick... I am not an invalid, and actually for the last couple of weeks I have ended up staying quite a lot at my parents.... out gallivanting, social days and generally getting spoiled 😀.
I also write this whilst currently feeling like my right hip is on fire. I don't think this is is chemo or cancer related, but just another random thing which has come along at an inopportune time... indeed I think it may be a flare up of bursitis again... basically inflammation of the fluid sac around the hip joint. However, I am not supposed to take ibuprofen or paracetamol whilst on chemo in case it masks a temperature, but the codeine that I am taking does not seem to touch the pain very much....
Anyway... cue a potential visit to my gp this week 😜. (I had phoned my breast cancer nurse last week when it flared up for 2 days initially - she doesn't think it is cancer related, (even when I wondered if it was possible for the cancer to have spread!), so I was just to go to my gp.... I phoned the medical practice to be told to phone back the next day... and I didn't. I don't really like making a fuss, and it had reduced in pain after a couple of days...
So... the biggest news over the last 3 weeks is that I have tested positive for what is known as the BRCA1 gene... which means that is what has caused my cancer.
(Think Angelina Jolie!)
It basically means I have a much higher risk of both future breast and ovarian cancers.... like up to an 80% chance, given I already had cancer once.
I actually got told by phone call, the day before my last chemo... unfortunately as I had just woken up from one of my afternoon power naps... groggy Linz does not take in very much!
To be fair, I had asked to be told immediately by phone as soon as the results were available, and the genetic counsellor was very nice and then asked me to come in to see her to discuss options in more detail in a fortnight's time.
The first thing I did was phone my mum and have a little cry. Even though I had researched this as a possibility, and had had a really strong premonition that this was going to be the case, it's really hard to hear it actually confirmed. As I had already done the research prior to being tested and knew what the options were, none of them were particularly pleasant.
However, at that point in time, I decided not to tell rest of my family, as my sister was due to go off on a lovely spa weekend, and didn't want her stressing either for me, or indeed for any tests she herself will be offered in the future.
So... I pulled myself together, and reverted back to practical Linz. To be fair, in the face of any adversity, I am always better concentrating on the practical aspects, and then coming up with positive silver linings... if I didn't, then I would probably go stir crazy and sink into an impossible depression... and I just am not (and don't want to be) that type of person.
That night, I ended up doing a lot of research on the various Macmillan and Breast Cancer Care websites about the gene mutation, and went as far as looking at the surgical options and what they may mean for me.
Effectively I have three choices:
1. I could go for screening every 6 months for rest of my life, basically until if and when they find more tumours - but first of all, I don't want to have to go through chemo ever again. Whilst I have coped ok with it, there are some really shitty days to get through, and also, there is no effective screening programme for ovarian cancer yet. Generally they only find that type of cancer when its really far advanced and terminal.
2. Or, I could take Tamoxifen for the next 5 years. However, for my type of cancer, there is only minimal research that it makes any difference to chances of recurrence, and it does have some nasty side effects - like being menopausal for the 5 years.... and I don't want to become a murderous narky cow!
3. Or, I can have what is called risk-reducing surgery. This reduces my risk of both of breast and ovarian cancers to less than 5%.
To me, this becomes a no-brainer. I don't want to be constantly worrying about every lump, bump, illness... and I don't want to be on drugs for the rest of my life.
Don't get me wrong, the thought of going under the knife for 2 operations, with potential additional procedures is not an easy choice. There are risks associated with surgery, there will be a significant amount of pain to get through from each surgery, and there is the whole thing about recovery times and not being able to drive for a bit, and a degree of loss of independence for a while... but my chances of survival for a longer life are much better this way. It's quite a stark reality to have to face, but then I see this as no different to weighing up options and risk at work, and taking decisions based on the best information available to me 😀.
I will bore people with surgical details in later blogs, but effectively I know I don't want plastic boobs, but it turns out they can take my own muscle and fat from different parts of my body, and reconstruct boobs into a size of my choosing... 😜.
But given I got this news a fortnight ago, I then decided to have as many nice days out as possible to distract myself until I had the formal appointment... so that's what I did 😀😀😀... "let them eat cake" lol.
However, lack of sleep and worry did mean that when I went in for my chemo review and actual chemo the following day, I was not in good form.
Seeing the oncologist for my planned mid-term review was a bit strange as they did not know yet about my BRCA results... after me telling them, he said that that may influence my next type of chemo... they may add things to it, change the dosage or change the frequency... this was not what I wanted to hear, as all of these things may actually prolong my treatment!!! Anyway, they now need to have a case review, and I now have a follow up appointment on Tuesday of this week coming to see what they have decided...
Whilst in that appointment, there was a clinical researcher also sitting in on my appointment... effectively they asked me if I wanted to take part in some clinical trials given the rare type of cancer I have, and now especially because of the BRCA mutation. In theory I would be glad to assist in these trials, as if this helps discover things which helps future diagnosis and treatment, then again, I think this is a no brainer. I have benefitted from other people helping to get cancer research to this stage, so it would be good if I could do likewise.
So, after a few questions (like does this limit my options for surgery etc.... the answer is no!), I got given the details of 2 trials which I may wish to consider, which in effect mean taking either a placebo or a drug for a couple of years with up to 10 years follow up. On the upside, I see this as even more extra screening for whatever I have, and means that any new symptom or pain can be explored and examined tout suite... and I can opt out at any time. However, the oncologist was quick to reassure me that I have to consider doing everything I want to do to fully recover from my cancer first (I.e. Surgery vs other options) before even contemplating clinical trials... and there is absolutely no rush for me to decide on clinical trials right away as they are all for drugs to prevent reoccurrence of cancer. (As opposed to treating a current cancer.)
After this appointment, I was shattered, so went home literally for a quick half hour snooze before going back for chemo... and I just felt queasy and unwell that day. The chemo was sore going in to my arm, I was really clammy and my chemo nurse was concerned in case I was coming down with something... however, we got through the chemo and I explained about the BRCA stuff... and got a bit emotional again... I don't think I am good when people are too kind and sympathetic as it was all still a bit raw... and with hindsight, I think being upset about it, meant that the chemo hit me harder this time...
Anyway... I had a few days of being really quite sick, and some other awful toileting side effects, but managed to get vertical by the Saturday this time around.... still couldn't eat very much, but managed a drive to South Queensferry to get ice cream on a sunny day 😀😀😀.
On the Monday, I went for a health fitness assessment with a cancer fitness specialist - this is a guy who runs fitness classes for people with cancer, and I was keen to join in order to build up fitness and resilience levels.
Well... despite my best efforts, I am technically too ill at present to join in. I have no recovery capacity at the moment, so what Mike is going to do is give me 2 x 30 min sessions on a 1:1 basis to give me some baby exercises to build up slowly.... but as I am still going through active treatment (and facing potential surgery) what I need to focus on is daily goals of getting up, eating and keeping it down, and gentle movements just to be active around the house. (Which is good news as that is what I am doing anyhow 😀.)
He actually said I could live on McDonald's and cake every day at the moment and it not being an issue, as I am not taking in enough calories to help my body repair itself from the chemo... what a diagnosis!!!
Unfortunately I was in the appointment longer than I anticipated (and what I had told mum to wait for me), so I didn't realise that so much time had passed until mum rang the buzzer looking for me - she was worried in case I had been spirited away by some kind of axe murderer... (I had missed 3 calls and a few texts from her 😱). In actual fact I had been walking on a treadmill with various monitors attached to me after a lot of talking lol... (I did manage to get his entire life history from him, as well as his plans for future charity fundraising activities .... what can I say, people talk to me 😀😀😀).
After coming out of that appointment, I was decidedly wobbly, so we went across to Greggs to have a pie and a doughnut... all without even getting a red face lol.
Other things of note over the last 3 weeks, is that I experienced true chemo / menopause rage. 😡😡😡
I genuinely thought I would try get through all of this as evenly balanced as possible, and although I was warned about the menopausal type symptoms, I thought to some degree that they were being overstated. OMG they weren't.
It was such a small thing, I had taken my niece out to the cinema, and we had offered to pick up Chinese takeaway for our friends who were also staying over with us that night... please note pick up rather than delivery as the delivery time was going to be over an hour. So I placed my order as we left the cinema, we nipped into get extra nibbles from the supermarket and then I went to pick up takeaway at the appointed time... well, it wasn't ready at the appointed time, and I had to wait 20 mins in the shop for it... (whilst being told "just coming in 5 mins" on 3 separate occasions!!!).
So I was already slightly irritated by the time I got home (I should also point out I had been constipated for 5 days by that point, and that may have also contributed to my grumpiness - but genuinely I had had a great trip to see Beauty and the Beast with my niece!). Anyhow, Dave was dishing out the food when it was discovered that the only meal which had not been included was mine. Well... to say I was absolutely grumpy as hell does not cover it. I phoned the takeaway and spoke in polite but clipped tones... they said they would deliver it asap. They took an hour. During which time I had dark thoughts, and drummed my fingers. And sighed. And huffed. A lot.
My poor niece and friends were trying not to laugh at me, and I knew in myself I was being ridiculous, but I just could not stop being grumpy!!!
Thankfully I have not had any other episodes like that, but jeez... I can laugh about it now, but I did have to apologise to everyone after I had calmed down. The worst thing was by the time the food actually arrived I didn't even want it by then 🤔.
Did turn out to be a great night with friends though - the boys stayed downstairs getting drunk and playing FIFA, whilst Nat and I escaped upstairs to chat and put the world to rights... we were chatting until 4.30am! 😀😀😀
Managed a day into work over the past couple of weeks too... given my change to diagnosis, I thought it would be prudent to go in and explain to my boss that it might be a wee bit longer for me to come back to work depending on what happens with surgical timescales etc. I also had really good chat with my HR colleague about process and what happens next... the great thing about everyone is that there is no pressure to come back to work, and that they reinforce that I need to concentrate on me getting better first and foremost. I still feel like I should be doing more with work than I actually am... that's partly as I know I used to be a workaholic, but it's also because I care about everyone and what's going on.
I also have fears of when I go on to half pay, but whatever happens will happen... to some extent I can't think about money at the moment, as there are too many other things to think about. I also know that there are many people who have offered to help if I do ever get stuck, so not going to stress.
It was really good being back in the office, but it does tire me out... I think it's just the need to be awake and concentrate for more than the 5 hours I am normally awake for before I need a nap... but again, I am trying to build up strength and resilience a little bit more each day, so it is a bit of a juggling act, but it is so lovely to see everyone and get a catch up - also to reinforce that I am not an invalid or victim 😀😀😀.
I have also lived life to the max with a good number of days out gallivanting - mum and I went to experience what an auction house felt like (we managed to refrain from bidding as it was our first time!)... really interesting and LOTS of material for my Mrs Mac Trials blog... then we had a day at Kelso races... not quite Ascot, but we came away £100 of winnings which we subsequently blew on a slap up meal 😋.
I also went to a 'Look Good, Feel Good' course where volunteers come and show people who have gone through chemo how to apply makeup, especially relevant for how to draw on eyebrows and give depth to eyes if you lose eyelashes.... it was a great course and we came away with a goodie bag which must contain literally about £250 worth of free goodies!!!
Mum and I have also been out a few random shopping days with cake and coffee, and we had a big family day out at my sister's new pad, doing some gardening and generally helping getting their new house into a state of readiness for them all fully moving up in June.
Other random stuff... I am also becoming an eBay seller of retro furniture (from sister's new house) - but after seeing how cheap things go for at auction, the chance of selling stuff on eBay may be sadly reduced I fear....
Have also managed to persuade Dave that he needs a wee break. Both from me and everything going on at the moment. He has maintained that he is fine throughout all of my treatment, but I am not underestimating that it's a lot to deal with. So he is going to Rome with his mum for a few days at the end of the month - it will be good for both of them, especially as we never got to celebrate his mum's 70th due to my treatment too. So happy days all round for everyone.
I am also making plans to go down for a final trip to Cornwall with my mum before my sister's family make final move up at end of June - so fingers crossed all goes as planned with chemo treatment 😀😀😀.
The last day of this blog covers my formal appointment with the genetics counsellor. She more or less explained everything which I outlined above, and I spoke about my research and my decision making process. Don't get me wrong, part of her job is to assess whether I am mentally sound to be making these decisions at the moment, and equally to see if I understand risks and all the options.
I explained that I already have an appointment to see my breast surgeon which was kicked off by the formal notification from the genetics team, and I understood that first appointment is really to talk through surgical options, risks and benefits. That's due to take place in a fortnight.
We then discussed about the ovarian options, and she asked if I wanted to wait and see about kids, delay it until I had thought further, but I said no, it is easier for me to grasp and deal with if I could get everything done in one block of time, as I don't want these things being dragged out, or for me to be like a yo-yo at work.
(And whilst I do love being an auntie, I was absolutely certain I did not want kids of my own.)
It was really fascinating actually, as if I did want kids, they can extract my eggs and take out the mutated gene so I would not pass this deficiency on... how amazing is that???
Anyway, I have asked for a referral to the gynaecology team to have the preventative surgery... that is likely to take much longer as they have a very long waiting list, given that they deal with cancers, pregnancy, other issues... which just reinforced my belief that it's better to get on their waiting list now rather than delay any further as well.
So overall, whilst it had been a lot to take in over the last 3 weeks, I am happy with how it has turned out - and I am a lot clearer in my mind about the way forward.
1. It looks like I am going to be able to choose my barbie-like body, and get a head start on my weight loss programme 😄😄😄.
2. I no longer have to go through potentially painful radiotherapy 😜😄.
3. Hubby getting a holiday with his mum to get a well deserved break.
4. I am getting to spend a lot of quality time with my parents, sister and brother plus kids.
5. Whilst taking time to write this, my banned ibuprofen has kicked in and my hip feels ok now lol.
At this rate, life really will start anew by the time I get to my 40th birthday in 18 months time!
Coming up in the next week I have another oncology appointment and I have new type of chemo... they promise no vomiting with this one! But first ... the weekend of BBQ's and more DIY at my sister's - have a good one peeps xx
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