As I may have mentioned once or twice, Mr Tafinlar and Mr Mekinist are the gift that keep on giving and the latest speciality is a cough that will not go away.
On a beautiful sunny but cold day in Kerry, I trundled back over to Cork to my monthly clinic appointment.
At this appointment they check that everything is going well, check your blood results and record any side effects. I had a good old whinge about my spotty chin, but I could tell the doc really wasn’t getting the enormity of this! Well it’s not his chin pretending to be a teenager is it?
But he was very interested in this damn cough and, of course, the blood pressure.
This time my BP (not my BO) was 150/100. He advised I must go back to my GP for this. The nurse did take it again later and it had reduced to 140/108, but still too high.
The doc sent me down to X Ray for my chest to see what’s going on with this cough. I used my new found knowledge of all the corridors of CUH and was down in X Ray in no time. I expected to be waiting ages as it seemed to be busy.
You know when you feel a bit of a fraud when you’re just sat in your normal clothes and other people around you are in gowns or have been wheeled in on beds? Well, it was that!
Thankfully, I’d barely sat down when a lovely lady collected me for my chest X Ray. Maybe I was cluttering the place up.
The doc rang me the following day to let me know the X Ray was clear and the cough is, who knew, another side effect. Not much to be done about it. Try hot water and honey.
For hot water and honey, I heard whiskey, lemon and honey – delicious and makes you sleep like a baby. Judge away, my conscience is clear!
The following day the GP prescribed a third Blood Pressure tablet. Having spent the last 30 years not taking any regular medication, it really goes against the grain to take yet another tablet. But I know it has to be done.
That evening we went out for a meal and – still off red wine – I had not one, but two glasses of Pinot. I still don’t get the same pleasure from a white but it makes me feel more sophisticated than having a glass of 7Up!!
My apologies for the lack of posts – been a tricky couple of weeks where Mr Mekinist & Mr Tafinlar have made me feel a little bit pants to say the least, but I am an expert at giving myself a good talking to, so I am back now!
As I told you, I was measured up for a compression stocking to help with my lymphedema and I returned to Cork to collect the sexy stocking. Since Mr M & Mr T have joined my life I have found that I have a series of good days, followed by a couple of bad days. I have had to remind myself that this is so much better than a lot of people endure during treatment. As it happened, the trip to Cork happened on a good day. I felt great, the sun was shining and I had the car to myself so a full on concert would be happening.
If you have ever had an operation, you may have had the pleasure of wearing a small white stocking to reduce the risk of blood clots while you’re not moving about. A compression stocking is A LOT thicker than that and A LOT harder to get on. The physio asked me to put the stocking on to ensure I could do it correctly. I have to mention at this point, I was bursting to go to the toilet. I had rushed in to get to my appointment on time, thinking I would just be collecting the stocking. I should have just told the physio that I needed a wee – but when do we ever do that with strangers? So I whipped off my jogging bottoms (not that they have ever been jogging) and tried to put on the stocking at top speed. Wrong! Remember back in the 80s where your jeans were skin tight and you had to lie on the bed to get them done up? Well this compression stocking is worse than that! Of course, I couldn’t then pop out to the toilet halfway through so I just had to persevere.
Thankfully, years of wearing unsuitable clothing gave me excellent grounding for putting on the damn stocking and I managed to squeeze it up my leg – it goes from my toes to the top of my thigh. Truthfully, for all that I was now about to burst, I could actually feel it working on my ankle straight away.
I got dressed in nano-seconds, thanked the physio and rugby tackled three ladies ahead of me to the toilet.
I will tell you in a later blog about a second compression garment that’s on it’s way to join my wardrobe and whilst I am genuinely grateful for any assistance, I can see a gap in the market for ‘more attractive compression stockings’, maybe seasonal ones!!
This was the quickest visit to CUH I had encountered and to add to my very good day, it was only €2.50 for the parking – most appointments I have cost between €10/€15 just to park. So winning all the way. The sun was still shining and I wound down my window and blasted out some tunes.
I apologise in advance for my dodgy music choices, but this is a snap shot of my Make-Me-Smile Playlist. It never gets played when OH is in the car for fear of a divorce after he fast forwards something I NEED to sing loudly to. But for you, my lovely reader, feel free to try it out sometime:
Bruno Mars – Just the Way You Are
Empire State of Mind – Alicia Keys
Joy – Bastille
Castle on the Hill – Ed Sheeran
Mr Brightside – The Killers
Party in the U.S – Miley Cyrus
Wildest Dreams – Taylor Swift
Can’t Stop the Feeling – Justin Timberlake
Drunk on Plane – Dierks Bentley
You’re Such a Good Looking Woman – Joe Dolan
Rock Star – Nickelback
She’s A Lady – Tom Jones
Can’t Feel my Face – The Weekend
Standing Outside the Fire – Garth Brooks
This is Me – Keala Settle
It goes on for quite a while but they get me from Cork to Macroom and they make me remember how incredibly lucky I am to be here and what a close shave I have had.
This is the first post I’ve written on my mobile as OH has commandeered the laptop. So fingers crossed this works!
I’ve already told you I met OH 22 years ago and fell for not only him, but for Dublin and Ireland. It really was a whirlwind romance and every time I go to Dublin, I genuinely do love the smell & the sound of the city.
Dublin has the weird phenomenon of being a big city but still has the feel of a small town somehow. You can never go shopping without coming across someone you know and I love that.
The first weekend I went to stay with OH he was still in trying to impress me mode (wore off very quickly) and took me to a boutique hotel in the Wicklow mountains. It was all very romantic and, naturally, we ordered breakfast in bed. When the lady arrived with said brekkie OH froze in the corner of the room. There was an awkward exchange and the lady left. Intriguing!
OH had been married before but was already divorced when I met him and the lady had actually been at his wedding as a guest of a friend. That had been 10 years prior to this encounter but she obviously remembered him & figured he was having some salacious extra marital tryst in her hotel!!! By the time we checked out she had gone home so she will forever assume she caught him out!
Anyway, I have digressed completely but it was for a reason. Ireland has a much appreciated Bank Holiday in October and we headed up to Dublin for the long weekend.
Actually this very time last year we went to Dublin to meet up with a friend over from Yorkshire. I managed to get gastroenteritis – I know, I’m a disaster – and couldn’t stomach wine so spent the evening drinking honey whiskey. Just for your future reference, whiskey does not cure gastroenteritis or even assist it in any way.
We, of course, had the obligatory chipper chips one of the nights, they were amazing, and had such a lovely time catching up with friends.
A new little side effect added itself – within half an hour of taking my meds, I am literally craving sugar. Thankfully our friends had a fridge full of goodies, but this has not abated at all and I am now the proud owner of a lifetime supply of wine gums for emergencies.
The day we left Dublin it was one of those beautiful cold Autumn mornings where the sun is shining and everything looks clean. I drove for half the journey and it felt great. I felt well.
I could finish there but I want to be honest for anyone also going through this journey. The following day I was floored with exhaustion. My arms felt like they would drop off and I was really giving an excellent impression of a glue sniffer on the spots front.
However, it was completely worth it. Two days exhaustion for three days fun? You know I’ll keep on making that choice!
I was finally at Week 4 of my meds – not that I’m counting or anything, but that means only 11 more months to go. Hey, when I turned 50 – I mean 40 obviously – I spread the celebrations out for that for at least 11 months so I’m sure I can handle these bad boys.
I set off for my first oncology clinic at 6am so that I could arrive ahead of the crowds to see the vampires – sorry, my mistake, to see the ladies in the blood room. I’m not an up-with-the-lark kinda gal. Friends who lived opposite us a few years ago suggested that we didn’t know there actually was two 11 o’clocks on a Saturday.
As such, I was not about to lose a valuable 15 minutes in bed by wasting it on make up. When I got to the blood room I was the only victim, I mean customer, so there was no time to slap on a bit of foundation to cover up the teenage spots. Yes, the spots, bleeding gums and a few mouth ulcers were still an ongoing gift from Mr Mekinist & Mr Tafinlar.
As I’ve told you before, even with my practically non existent veins, the ladies have that needle in your arm before you’ve warmed your bottom in the seat. As it was still quiet, my lady was in the mood for a chat. At the end of the chat – pay attention to this – she checked my date of birth. When I confirmed it she said she thought it was recorded incorrectly as I only looked IN MY 30’S!!!!!!! Some might say that was a bit of flannel to cheer me up, some might say it was the chin full of spots, some might say youthful good looks, whilst others might say pickled well. You can choose but I don’t need to hear the answer!
Straight from the blood room, I headed to see the physio. With so many lymph nodes gone, my leg had been swelling badly every day. The physio measured me up for a compression stocking. My dear readers, over the years, I have worn fishnets, seamed stockings, hold-ups & opaques but I never thought I would be sporting a compression stocking. The physio measures both legs to do a comparison and your leg is marked with blue marker all the way from top to bottom – toe to bottom actually. You get a choice of colours – I chose black as I figured it might be more practical. I will let you know if it was a good choice.
From there I went to the clinic. I expected to see my own oncology nurse, but this was different. I was assigned another nurse and headed off to an examination room with her to meet one of the oncology team. They needed to know about the side effects I was experiencing. They didn’t seem overly concerned about my spotty chin. To be fair, I had managed to cover up with a bit of make up at that stage. But, they were concerned about my blood pressure – do you see a pattern forming here? This time it was 150/115 – not that clever at all. They advised I must see the GP the following day to get it under control.
As an aside, if you are ever trying to text someone about your blood pressure, use the full words. If you put BP, your not-so-smart phone changes it to BO. So if you are rushing you end up telling people that your BO is out of control. This can produce a range of mixed replies!
As the appointment drew to a close, the next date had to be booked. The doctor referred to my ‘oral chemotherapy’ and swept over it so quickly I wasn’t sure he had said it. But when the appointment card was given to me it did indeed say Oral Chemo.
I needed to get back on the road so I didn’t question anything, but my head was buzzing. Wait a minute! I’m on immunotherapy, not chemotherapy. I’m not losing my hair or picking out head scarfs. Have I not paid enough attention? Have I not asked enough questions? I drove home in a blind panic.
I was still upset when I got home and blurted it out to OH. Generally I like to think things through before I tell him anything major. OH was as upset as me. Had we been tricked?
The following morning NN rang me. It was a perfectly timed call. She set my mind completely at ease. She explained that oral chemo would be an old school term for immunotherapy. That whilst chemo blasts everything, hence the hair loss and all the other terrible side effects that brave chemo warriors go through, I am on a targeted immunotherapy. Mr Mekinist & Mr Tafinlar speak to each other and stop certain proteins building up which in turn stops, hopefully, any further melanoma being created elsewhere in my body.
I know they are only words, but they are incredibly important. In so many jobs I have done in the past, we use jargon so easily. It was the first time I had been so upset by that jargon.
The following morning I received this card from my beautiful friends in the original WhatsApp conversation who had forced me to go to the GP with the lump. Of course, it is the ginger prince inside that suit of armour!
In the 22 years that we have been a couple, there has probably been a lot more mornings where I have been the hungover one. Obviously this makes me much more sympathetic when it happens to OH….. Of course, that’s an complete lie – I am never sympathetic and definitely not on the morning of a family wedding.
The wedding would be starting at 2pm and was being held in a beautiful room in the hotel. This was lucky on two counts – 1) the storm was raging outside 2) OH could sleep it off for a few hours. But not before he took me for breakfast! Some might say I was cruel for insisting he accompany me down for brekkie – I prefer the term tough love.
Breakfast was one of those fabulous hotel ones where you can have a bit of everything – a fry up, healthy cereals, even pancakes. Having been shown to our table, we made our way up to the buffet and I took a bowl of cereal, intending to return for the hot food. I left OH trying to negotiate the toaster. After a good 10 minutes had passed I deduced OH must be lost – it was a big dining room I suppose. I have to confess to having a little snigger to myself, picturing him forlornly drifting round the tables with his little plate of toast; I know, I have a bad streak in me. Just as I was about to send out the search party, he appeared. He was completely delighted with himself. Not only had he worked the toaster, he had also plated up two cooked breakfasts. The fact that I have been a vegetarian for nearly 4 years had obviously slipped his addled brain and my plate contained sausages and white pudding (to be fair, this would have been my favourite back in the day). But, let me hear the applause, I thanked him for his amazing deed and covered said sausages & pudding over with my napkin.
We went back to our room where I finally allowed him to fall into a coma for the next few hours.
The delightful meds duo of Mr Mekinist & Mr Tafinlar have produced several side effects so far and one of them is teenage spots. To be truthful, I never really had many spots as a teenager, so maybe this is my punishment for that. I piled on the makeup and one of the gorgeous bridesmaids twirled my hair. I wasn’t sure if you wanted to see the end result, but here you go
I finally woke up the snoring OH at 1pm and he made himself look handsome – men have it so easy – in about 10 minutes. But there was talk of ‘not drinking today’ and ‘I won’t be partying tonight’ – oh yes, we’ve all said the words, but do we ever stick to them?
The wedding was fabulous, the bride was very beautiful and the groom looked as he should – completely delighted to be marrying the woman he loves. For the record, I did a reading of Sonnet 116 – do look it up. OH suggested anyone reading it should be wearing a cod piece, but the bride chose it and it was incredibly fitting.
OH’s resolve not to drink lasted until 5pm. Surrounded by cousins he hadn’t seen in years, the drink and the stories flowed. The meal was served and I tested out my red wine worry. It was true! Red wine, my most favourite thing, did not taste right. Of all the things the meds wanted to take, did it have to be red wine? It couldn’t be brussels sprouts or cabbage? Sorry I can’t eat that disgusting cabbage stuff, my meds don’t allow it? Now that would be worth it. I drank two glasses to make sure.
The day drifted into the evening and I calculated there had been 2 hours since I had eaten so I took myself off to my room and took my meds. It became clear almost immediately this was a mistake. Either the wine or my time calculations were wrong. I stood about in the room, kind of pacing, but more like shuffling from one foot to the other. I am not a serial puker, I can count on one hand the instances of non-anaesthetic puking and they have pretty much all been alcohol related. Most mortifying was being sick in a pint glass at a party after too many jelly shots – I hope you’re not eating whilst reading this. Anyway, the point is, I knew it was coming and there was nothing I could do to stop it. Sure enough, the meds, the meal, the wine, the lot, all got a second viewing.
The instructions are that, if you are sick, you don’t risk taking another dose of the meds as you don’t know how much you might have already ingested. Truthfully, having been sick, I felt ok. My hair was still twirled, my make up wasn’t smeared down my face, so what to do? Go back to the party of course.
The dancing was in full swing and I normally get up onto that dancefloor and stay there until something I can’t dance to comes on. Sadly my leg was too sore for that and I sat back at the table to watch the rest of the party unfold. I called it a day at 2am. OH had found not just his second wind, but his third & fourth. As I left him to it they were striking up the guitars for a resident’s bar sing song.
Do you want to have a guess what time the sorry knock came to the door? 5am. But this time there was an added bonus. One of the bridesmaids couldn’t get into her room and my Sir Galahad had brought her along too! Luckily our room had a double and a single – good job really as I don’t think he had quite thought about the actual semantics of bringing another woman ‘home’ with him. I have to say I did have a giggle to myself as the two of them fell into snoring, drunken comas.
Whilst this has been a hard few months for me, I sometimes think it has been even harder for OH. All the attention is on me and he only gets to hear me have grumble about aches & pains. I was delighted he had enjoyed himself so much, he deserved every moment of it.
I may have told you that OH is a Dub – that is, Dublin born & bred. When we lived in Dublin I travelled all over the country with various friends but he rarely ventured further than County Wicklow. In his mind, the furthest anywhere is in Ireland is about 3 hours away. He lived in Canada for a while and didn’t seem to think anything of travelling 7 hours straight, but apparently not in Ireland.
Now we live in County Kerry which is at the very bottom of the country, you would think that getting to County Wexford, also at the bottom of the country, would be relatively straight forward. Wrong! It’s a 5 hour journey without any stops – and sticking to the speed limit…officer.
We had arranged for a friend to come and stay with the ginger prince. She arrived armed with salmon and various goodies to forge a friendship with the prince. Obviously this was more than acceptable to said prince and he was happy for us to leave without a backward glance.
You know how the ‘are we there yet?’ chant from the back seat? Well our journeys mainly consist of ‘when can we turn your crappy playlist off?’ and ‘when did Ireland get so big?’. OH is not a great traveller by any form of transport. When Harry Potter’s Floo Powder is out on the market, OH will be it’s biggest fan.
So off we set on our journey to Wexford. The Mekinist has to stay cool (diva meds) so a friend had loaned us a cool bag and I had called ahead to arrange a fridge in the room. It doesn’t escape me that I would previously have been carrying prosecco and nibbles in my cool bag and the fridge would only have been required for those necessities.
My leg started to swell before we even reached Cork with quite a few hours to go. We finally stopped in Dungarvan, County Waterford where we found a quiet corner in a tea room that I could elevate my leg without drawing too much attention. Having consumed a load of tea and cake we intended to hit the road again.
Before I tell you the next bit, I need to explain there is not one single decent chip shop (chipper to Dubs) near us. There are takeaways, but you need to have consumed vast amounts of alcohol to think the chips are anything more than edible. This has been the cause of great consternation to us and we have both agreed that the next house move we make will be within driving distance of a good chipper. What do people even eat on a Friday without a decent chipper?? Anyway, I needed to explain that so you don’t think I have become some kind of savage. But, as we left the tea room we spotted a proper chipper. It called to us and we were drawn in even though we were full of tea & cake. Yes, dear readers, we did indeed have huge portions of chips, wrapped in paper and snaffled the lot walking back to the car. I’d like to tell you I was ashamed, but that would be a total lie.
By the time we reached the hotel in Wexford, it was dark and pouring with rain. There was a yellow weather warning for an incoming storm. Nothing else to do but get comfortable in the bar.
Another revelation – I found that I wasn’t enjoying the red wine. I am no connoisseur and whilst I know what I like, I am normally happy to drink even the crappiest red wine. I had noticed that a few things hadn’t been tasting quite right, but surely not my favourite red wine? Like the professional I like to think I am, I persevered. But after two glasses, I knew all was not well. I put it down to tiredness from the journey and decided to call it a night.
As I am now certain that OH is not reading my blogs, I can tell you that I left him in the bar. Not with a group of guys, but with the BRIDESMAIDS. Yep, he was playing with fire, trying to keep up with a group of ladies. I finally woke to a sorry little knocking on the bedroom door at 7am the next morning after he had woken up in the bar where the ladies had left him! A lesson to all men out there – never mess with ladies on a mission!
The wedding was upon us, surely my taste buds hadn’t been ruined too much by all this medication?
Monday morning came and the Novartis nurse rang to see if she could visit me earlier than arranged. The weather was horrendous – lashing with wind & rain – and she had to travel back to Mayo that day.
Back in the day, I was a Visiting Officer in the UK dealing with benefits. This was actually one of my favourite jobs and for all the times I chose not to sit down in a dirty house or drove with all my windows open in the middle of winter to get rid of some unidentified smell, they were great days and my colleagues subsequently became my best friends.
One of my funniest visits was a double visit with a colleague. We didn’t generally double up but some visits would have a red flag and we doubled up for safety. This visit was actually an older gentleman and we only needed verification that he was living in the property so it would be quick. From the moment we walked up the stairs to his flat, we could smell the familiar aroma of something not-quite-legal drifting out. He had clearly forgotten we were due to visit and he & his friend were planning on a ‘relaxing’ afternoon. These gents were easily in their mid 70s and the sight of us descended them into schoolboy giggles. You really couldn’t do anything but laugh along with them. My colleague asked the questions we needed – frankly we could have asked them anything and they would have told us – and we went to leave. They even asked us if we would like to join them for the afternoon! Tempting, but we declined. By the time we got back to the office we both had cracking headaches and the munchies – all in a days work.
Anyway, I digress. I only tell you this because I know how important it is for an ‘official’ to have somewhere nice to go to the toilet when you’re out all day. So, of course, I was happy for the Novartis Nurse – NN from now on – to come & see me early.
She was lovely and very approachable. We discussed the side effects I had suffered so far and she advised me to drink a lot more water and to have a small supper before going to bed to ease the nausea. I’m always up for a small supper. NN did give me some comfort in telling me that the three month mark is a turning point for most patients. The side effects lessen and people tend to feel much better.
She took my blood pressure and, sure enough, it was sky high again. She insisted that I see the GP that afternoon. For you nursey types, it was 150/110 – even I know that’s not great. She headed back to Mayo with a promise of keeping in regular contact. She was also very impressed with my diary for noting down my progress:
The trip to the GP proved useful as my blood pressure had dropped slightly but he changed my Lecalpin dosage slightly and on we go to see what effect that will have.
My next big challenge was a trip across to Wexford for a family wedding. How would I schedule my meds and just how swollen can my leg get in a six hour journey…
The next couple of days passed in a bit of a haze to be honest. We don’t have children – other than the Ginger Prince obviously – and, as such, our lives are fairly selfish and we don’t have to work to anyone else’s routine.
With me not at work, my partner working shifts & being part vampire who does his best work at night, we were starting to stay up later & later. I’d love to tell you this was because we were doing something constructive but you already know that would be a lie. Re-runs of Auf Wiedersehen Pet were becoming our staple diet. That’s all very well when you are on holiday, but if you’re supposed to be taking your meds at the same time every day and ensuring you have 12 hours between them, not forgetting the empty stomach part; well, it makes it messy.
The side effects were coming thick & fast, each one more delightful. Cast your mind back to the worst hangover you have ever had. The one where you say you’re never drinking again. We’ve all been there. So you lie in bed wondering if today is the day you will die of alcoholic poisoning and asking yourself why Cookies & Cream vodka shots seem like such a good idea AT THE TIME. Well the side effects were starting to feel a lot like that – without the fun part first.
Pounding head, nausea, sinus pain, feeling like the flu is starting, oh and a little bit of acid reflux thrown in for good measure. One morning I woke up at 5am, the nausea was so bad I had to wake my partner who – serious brownie points here – got up, not a sigh or a moan in sight, and brought me peppermint tea and crackers. I know, he’s a keeper!
Actually, on the subject of my partner, I have decided I can’t keep saying ‘my partner’ and ‘my boyfriend’ makes me sound about 11 years old. So I am going back to twitter speak and he will, henceforth, be referred to as OH. For those of you not in the know, this means Other Half. Apart from that, it always amuses me as I read it as Ruth Jones in Gavin & Stacey saying ‘Oh’.
On the Friday of the first week I got a call from the Novartis nurse. Novartis are the pharmaceutical company that make my meds. I had agreed to let them contact me at my first immunotherapy clinic. We arranged for her to visit me at home the following Monday.
Monday morning arrived and I opened up the various bottles. The Mekinist has to be kept in the fridge – personally I think this is only to make it look more important than the Tafinlar, but I guess there probably is a scientific reason for it. Not just that Mekinist wanted top billing like film stars and when they get refused top billing they insist on the ‘also starring’ at the end.
My meds cocktail is ‘also starring’ Lecalpin, the blood pressure tablet. So the breakfast cocktail is two Tafinlar, one Mekinist and one Lecalpin. They have to be taken either two hours after food or one hour before food. Either way, your stomach needs to be empty. You can’t take them with anything else other than a large glass of water. Now, even I am not on the pop at breakfast time, but I generally take any tablets with a fruit juice or a glass of milk. No such luck with these bad boys.
I may have eluded to my occasional dramatic ways; well me swallowing tablets with water ranks right up there in Celine Dion fashion. Now I have learned to add photos, here you go with a pic of my morning cocktail:
The two big capsules are the Tafinlar. There is an extra goodie on there as a new blood pressure tablet has since been added, but that’s a whole other story!
Today, being the first day, after I took the cocktail I went back to bed. To be honest, I was feeling a bit sorry for myself. I’ve deliberately stayed away from the delights of Phil & Holly in the mornings as I know I would become addicted and never want to go back to work. When I got up at 11am – I know, the sheer luxury of it all – I was boiling hot and my face resembled a beetroot. This went on for about an hour. I appreciate a rosy complexion is supposed to be healthy but this was more the face of someone who had downed a bottle of red in the sauna. Not actually something I have tried, but there is still time.
The meds need to be taken with 12 hours in between each dose, so at 8pm I took the remaining Tafinlar and sat back expecting more hot flushes. Not so. As I was soon to discover, these meds are the gift that keeps on giving with a surprise side effect most weeks. As I sat on the sofa, my arms started to hurt. I had been warned of joint pain but expected it to be shoulders or knees. This was between my elbows and wrists and felt as if my arms were swelling. It was the strangest sensation.
My partner thought I was having some kind of pink elephant moment as I sat there, staring at my arms! But I genuinely expected to see them swelling. Of course, there was nothing to see – other than maybe more of my marbles getting lost.
That old friend nausea also came to play for a while and brought along a cracking headache with it. Thankfully neither of them lasted too long and Day 1 was over.
Two days later we trekked back to CUH but this time to the Dunmanway Ward. If you are ever lost in CUH, give me a call. I can probably direct you to pretty much any ward at this stage. But before that, was the issue of the bloods I had been reluctant to part with earlier in the week.
The Blood Room is located just down the corridor from the dressing clinic but is operated with a ticket machine – you pull your ticket and wait for your number to be called. We arrived at 1pm – big mistake! As I’ve told you before, the ladies in the blood room are super efficient and have that needle in your veins before your bottom is comfy in the chair. But I guess even vampires need a lunch break. Small tip from me – avoid lunch times at all costs. There was a huge amount of people all waiting with their little slips for the various blood samples required.
Again, I dispatched my partner to go & buy a paper (well, go anywhere rather than stand looking crossly at everyone) and sat back for a nice chat with an elderly gent next to me. He started to tell me how the English were a good rugby team, but not a great one. I could tell he was launching into a favourite subject. However, as I am Welsh, not English, he wasn’t getting much of an argument from me. In fact he lost interest in me almost instantly!
At 1.30pm there was a flurry of activity. The vampires returned and had the queue of people cleared in no time. My bloods were taken in the first attempt – they are geniuses.
The Dunmanway Ward is different again from the Orchid Centre. It has a lovely reception area where, I suspect, the receptionist will remember your name after two visits. If you are going to start immunotherapy, it’s a place you’re going to become very familiar with. It’s small and actually very welcoming.
My oncology nurse introduced herself and took us through the side effects of the combination of meds I would be taking. As I have said to you before, this is only my interpretation of how things work. So whereas normal chemotherapy blasts everything in your body, these meds are targeted. They stop proteins being formed that can become tumours.
Obviously there are going to be side effects. The main ones are flu-like symptoms, nausea and joint pain. There are lots of other terrific little bonus side effects which I will come onto in later posts.
Of course, she took my blood pressure which was sky high. Thankfully she appreciated that coming to see her was pretty stressful and left it to me to speak to my GP about the meds for that. I can’t say that I feel really stressed when I go to these appointments, but I guess I must be as my pulse races and my blood pressure zooms up, yet in my everyday life I’m a pretty laid back kinda gal.
So, if you’ve ever been on holiday in a really warm country and maybe partaken of one or two alcoholic drinkies, you might have experienced your ankles swelling slightly. I know this is the only time I have ever experienced it, until now. Because my lymph nodes are gone the fluid in my left leg is not moving as it should, causing the swelling. For all of my exercises, the lymphedema had set in and was really quite uncomfortable. The swelling was on my ankle, the top of my foot, behind my knee and at the very top of my thigh – that’s a lot of swelling on a normally skinny little leg.
I love my converse trainers but I was finding they didn’t give my foot any support so I had to dig out – from the very back of the wardrobe – a pair of actual trainers. These have been worn so infrequently that even though they are about 5 years old, they look brand new. I suppose at least they went with my sporty pants. My ankle and the top of my thigh were really warm all the time with the swelling. Watching telly with my leg over the back of the sofa has become my go-to position! I do appreciate this isn’t very lady-like, it also annoys Roger no end.
You may remember my ankle required an MRI. This turned out to be all clear and the cause for concern was probably created by a sprain years ago. It was actually the weekend of Lady Diana’s funeral. I was in a night club with friends, on the dance floor, when a fight broke out. Two young ‘ladies’ were throwing punches right next to me and one of them landed on my foot. This has come to be known as a comedy injury. If you don’t end up with one, have you even been on a night out?
We got a taxi back to my friend’s house and I doubt I gave my ankle much thought until the next morning – alcohol is a marvellous thing. The next day we went to visit my friend’s parents who were holidaying in their caravan just outside Scarborough. Her mum didn’t like me – thought I was a bad influence, which I absolutely was definitely not – but she did suggest that my ankle didn’t look great and we should maybe go to A&E. You can probably picture the A&E visit; two single women, both old enough to know better, very hungover and a young doctor. Cue lots of giggling and double entrendres, offers to listen to my chest with his stethoscope etc. I would like to think we cheered up his day.
I remember someone telling me that I would always have problems with that ankle. Well I certainly didn’t expect that problem to be a very unattractive swelling one.
I agreed with the oncology nurse that I would start to take my meds the following Monday….