FRIGGATRISKAIDEKAPHOBE – that got your attention didn’t it – it means “person with a morbid fear of Friday 13th”. Now I must point out that I am not usually a Friggawhatsit(!), but THIS Friday 13th was important as it was going to be a big day in the Battle of the Git. Not only was I due my second doses of Herceptin and Taxol but, to make my life easier I was having a PICC Line (PL) put in so, in Alan’s words, I would now be an upgraded “Plug & Play” version of the old me…
Therefore, so they couldn’t cross my path, the cats were locked in the back room, mirrors were removed from walls and shelves then covered in blankets – Hannah wasn’t much impressed when she was trying to straighten her hair that morning and when we left the house I tried desperately not to step on any cracks in the pavement, which is difficult round here because Southend Council are rubbish at repairing the paving slabs in our streets – hence they are all cracked. The neighbours must have thought I was playing Hopscotch.
My appointment was at 8.30am, which meant leaving Hannah with Tracy, one of my friends, so she could walk her to school. We packed the Chemo Picnic Bag full of the usual goodies and entertainment, loaded up the car and set off. Alan did a slow drive past Tracy’s house and Hannah has now mastered the art of tuck n roll with minimal bruising…..
Being as it was school drop off time, traffic was pretty heavy so the journey took us a bit longer than usual and we parked up with ten minutes to spare. – phew, I swear Alan was breaking out in a sweat. We checked in at reception and were taken through to meet with my nurse for the day, Dawn. After some general chitchat, Dawn explained the risks associated with having a PL (well, come on, everything else so far has had the capacity to create yet another problem, so why shouldn’t this). The risks are as follows; an increased chance of blood clots (err chemo increases your chances of blood clots so, does that mean a PL increases the increased chance of blood clots? Answers on a postcard please), air embolism (symptoms of which include confusion and lightheadedness – would anyone notice any difference with me?), Phlebitis (it’s ok I’ve got that one already - tick!) infections, leakage (better stock up on Tena Ladies then) and last, but by no means least, your arm might drop off (only joking, I just wanted to see if you were speed reading). Once these risks had been explained and I had signed about 40 consent pages (in blood), stating I wouldn’t hold anyone responsible if any of them occurred, we were set to go. Dawn wheeled in a trolley which was heaving with the paraphernalia required for the PL– it took her about 15 minutes just to set up.
Now came the fun bit. After inserting the canular (in the crease of my arm), Dawn showed Alan how to flush (clean) it with saline and – now this is the bit that made his day – she told him he would also be able to take my bloods for testing from now on. Oh Lordy, he looked like all his Christmases had come at once. His face lit up, he sat on the edge of his seat and watched her intently! I am still trying to work out whether I should be calling him Nursie or Vlad. Question: should his uniform be PVC or leather?
Once the canular was in I moved over to the bed, which thankfully was very comfy as I ended up being there for quite a while. In preparation, and as timing is an issue with these procedures, she had already set up the onsite blood machine so that, once my bloods were taken the testing would only take about 10 minutes and, if all was ok, it would be all systems go. Dawn handed me the “nurse call” button with instructions to push it when she had taken my bloods, which I duly did. A nurse came in, took the red stuff and disappeared only to reappear two minutes later saying the machine had gone down and would be ready in about 20 minutes – Friday 13th Strike One…. The same nurse was then sent over to the main hospital with instructions to get the tests done ASAP. The minutes ticked by, we chatted about kids, life and the universe – after a while I suggested maybe the nurse had taken a number, like at the deli counter in Sainsbury’s and was still waiting in line. Alan was sent out to flag down any passing nurse and soon came back clutching the illusive piece of paper we had been waiting for. Dawn checked the results, all was as it should be and we were finally off.
WARNING: If you don’t like gory bits, skip the next paragraph – If you decide to read it anyway, remember I did warn you and will not be held responsible if you pass out or throw up (but at least you will have an idea of how I felt during this process)
The PL is a thin rubber-like tube which, after being inserted into the canular is then fed up the arm through the vein, over the shoulder, out one ear and in through the other (checking your attention span again) and down the Superior Vena Cava (one of the main veins) into the heart - well it should be that simple anyway. However, if you’ve read my blog from the beginning you will know that nothing, I repeat, nothing has been “simple” with me. Friday 13th Strike Two. Before the procedure started, Dawn had measured the distance from where the tube would enter, up my arm, across my shoulder and down into my chest so she would know how much line to use. The line is marked in centimeters, so the nurse knows how much she has been able to feed in. The length of line needed for my PL was about 56cm, however, Dawn could only get as far as 44cm then the line kept getting stuck at my shoulder. She tried a number of times but things weren’t looking good. I was determined it would go in though, as I already have a burn in one of my veins from the previous weeks chemo and the PL was going to help save my veins. I would stand on my head whistling Dixie if it helped the damn line go where it should. We tried me lying down with my chin touching my shoulder, which with my neck problems, was a testament to how bloody minded I am, that I managed to get in that position – nope that didn’t work. Time was ticking by and I knew it wouldn’t be long before it was called off. I was beginning to panic now and I asked if we could try once again, this time with me lying flat, head and neck straight, me breathing deeply and willing the damn thing to go in………Dawn agreed but warned that usually meant the line went the wrong way which obviously wouldn’t be good. I got into position and went to my “happy place”… BINGO! EUREKA HOWZAT!! Finally, the line was in and hit the magic number – 56cm. But – oh yes, there is always a “but”, as Dawn had warned me, by lying with my head and neck straight there was the strong possibility that the line would have gone astray and instead of going down into my heart, it would have gone up my neck into my head – not really where I want the chemo to be going! So, I was sealed up, taped with sterile bandages and sent off to the X-Ray department for a chest X-Ray – both of us convince I now had a blue tube waggling about in my brain. Half an hour later we were back in the Chemo unit waiting room doing what we do best - waiting….. The door opened, my name was called and as I looked up Dawn was smiling at me and giving me the thumbs up. Success – well done Dawn, I always had faith in you.
Now I was “Plug & Play” I moved through to the ward and was hooked up to a saline drip to prepare me for the next dose of Herceptin. The Taxol and pre-meds were ordered up but for some reason the Pharmacy was on a go-slow that day, so things took quite a bit longer than they should have. We finally got going with the pre-poison poison just after lunchtime. By the time I’d had all my treatments we’d eaten the contents of the Chemo Bag, sampled the delights of Costa Coffee, read our books and watched some afternoon TV and now it was nearly 6pm. My final dressings were done, I had my chemical bin (for the old dressings and used sharps etc), my box of new dressings and we were on our way home. Ten hours is a very long time to spend in the unit and we were both exhausted by the time we got in. Dinner and bed were next on the agenda.
I woke up at 4am Saturday morning – damn steroids are not only turning me into a Human Dyson, they are ruining my beauty sleep too. I decided to get up and eat my first breakfast. As I don’t like to waste time I updated my blog, did my online banking and booked my Tesco’s delivery slot (at the rate I am eating, we will need two deliveries a week soon). Once the rest of the family finally appeared, bleary eyed at 8.30, I had another breakfast and announced I was feeling fit and ready to face a shopping trip to Lakeside. Alan started heading back to bed but Hannah, who received vouchers for her birthday which were burning a hole in her purse, got showered and dressed in record time – she even skipped the hair straightening routine! We spent the whole day at Lakeside, I needed to stop frequently to drink and rest but other than that it was a lovely, normal day.
I fully expected to experience some side effects over the weekend, especially after having such a lot done in one day but apart from being quite tired, I felt fine in myself. However, the PL was uncomfortable and my arm felt like it didn’t belong to me – like an alien arm - if you have seen District 9 – it was just like that. It wasn’t hot or swollen, so I wasn’t worried about an infection but it didn’t feel “right”. I hoped it was just a case of me mentally accepting this foreign object I would have to live with for the next 3-6 months.
It was Monday that the side effects started making themselves known. It started with a nosebleed when I woke up, this is from where the lining of my nose has thinned and my nose hairs have fallen out so there is nothing to stop any dust getting up there and causing irritation. I started getting headaches, a rash appeared on my cheeks – I did worry that I was developing an allergic reaction to Taxol, but after a chat with my chemo nurse, I was assured this wasn’t the case – thank goodness. Early menopause is another side effect of Taxol and so now my periods are now totally screwed up – well, at least I know I’m not pregnant. I was also quite spacey on Monday, but I don’t think anyone realised lol.
I had a chemo free week this week so arranged to meet up with my friends Rita and Jackie. We’ve known each other for donkey’s years (Jackie and I grew up next door to each other and Rita is married to another childhood friend). We always have such a laugh whilst we are putting the world to rights. Again, this is better than any medicine the Dr can prescribe. I think all my friends were so shocked at my diagnosis and when they see me looking so well, despite undergoing treatment, it reassures them that I’m still me and I’m fighting The Git with all I’ve got – and more.
Right back at the beginning of all this, my sister Gill said she wanted to do something practical to help me. We chat a lot on the phone, skype and emails but as she lives so far away she feels she can’t be as involved as she would like. So, after speaking to a friend of hers who has survived BC twice in the past 12 years, Gill decided she would arrange for me to have a cleaner. My brother Kevin and my youngest sister Kate are also contributing as they too felt they wanted to help in a more practical way. At first, though I was touched that they would do this, I couldn’t really see that I would need one, but agreed to think about it. Well, 8 weeks later with two buggered arms and the energy levels of a 99 year old, I am so thankful to them for arranging it. Kathy started on Thursday and did all the jobs I find it difficult to do at the moment such as cleaning the bathrooms. I have obviously been doing them since all this began, but not as thorough as I would normally and then I find myself completely knackered afterwards. After she left I felt so much better just knowing the house was clean (if not cleaner – she dusted bits I wouldn’t normally bother with lol) again.
My PL hasn’t felt right all week but I wasn’t sure if it was real or imagined. Anyway, with the weekend coming up I didn’t want a problem to arise and have to go to A&E – the thought of bumping into that particular 12-year-old Dr again gives me the creeps. I called the unit but they were closed so I rang my BCN. Her advice was to call the ward that I had been admitted to over Christmas as they would be able to help further. I did this and the upshot was that they wanted me to pop in for a check up. See, I can’t even have a week off can I? Anyway, the nurse examined the PL and said my muscle was a bit swollen and there was some discharge from the wound site. This was an indication of a possible infection. A swab was taken and has been sent off to the lab to “see if something grows” yuck. So, I am now on antibiotics – and we all know what nasty little side effect they can have, don’t we ladies! One of the Oncs was in the unit so she checked me over and said there were two possible issues; an infection or a blood clot – what fun! She, personally, doesn’t think it’s a blood clot so I am holding her to it. She also said she would notify the Dr who will be on-call this weekend and let him know what is happening. If my arm gets worse or I feel ill in any way, I am to call the emergency number as I may need to be admitted for blood thinning drugs or IV antibiotics…what do you think my chances are? I called Alan and explained what had happened. Obviously, he is concerned about the problems I am having with the PL but, though he didn’t say as much, I think he was a tad disappointed that he wasn’t going to get to play Nursie just yet – there’s always next week love – and guess what – next week you need to take my bloods too! I’ll get in some steaks and some fava beans and put a nice bottle of Chianti on ice shall I?
Before I sign off I have two lots of good news to share this week. One, I had a phone call from Tesco’s yesterday. At first I thought they were trying to flog me a credit card, broadband or life insurance and I was ready to tell them to beggar off, but then the very nice lady announced I have won a competition I entered at Christmas. I vaguely remember doing my shopping on one of those very early mornings and seeing the banner “win a share of a million clubcard points” – well I’ve won 10,000 – not that I had a clue what this would mean. So, I called my friend Kerry – who is an expert with these things – and she told me I have won the equivalent of £100 or £400 if I use them in the right way. Excellent news eh! Hannah is already plugging for an Ipad – hmmm I have seen a handheld Dyson that I like.
The second piece of good news also came via a phone call. My BCN, Laura, rang to see how I was (she had heard about my PL problems – I have a feeling my name might be on a list over there, you know the “troublemaker” list). She also asked if I had been told my biopsy results from my poor old left boob. I said no, that I was still waiting. “Your results are all clear Debbie – nothing to worry about, your left boob is behaving itself” I felt such a sense of relief. With everything else that has been going on, I had pushed it to the back of my mind but I immediately rang and texted Alan, my parents and my mother-in-law, to put their minds at rest. I also posted it on FB to let my wider circle of friends know – everyone was so pleased for me. What a lovely way to start the weekend! I was planning on taking my boob out to the pub to celebrate when one of my friends reminded me I was on antibiotics – spoilsport!
Anyway, that’s it for this week – oh, I almost forgot to tell you my hair started falling out on Friday. I was in the shower washing my hair (one handed – you try it – its flipping difficult) when all of a sudden I had a mouthful of hair – gross. When I could finally open my eyes I looked like Chewbacca. Thank goodness I’d had my hair cut very short on Monday – it was very thick and shoulder length before. I imagine I would have looked like Monster from the Muppets if I hadn’t had it cut and thinned (I kept it all in a bag to show Alan – anyone need any cushions stuffed?). All along I have been blasé about losing my hair. “I’m not bothered” was my stock response. However, it has bothered me more than I believed it would. It’s a vanity thing I suppose. Hairdressers have always commented on how lovely and thick my hair is. It drives me mad as it takes nearly an hour to blow dry. Even after having it cut it was still quite thick. Also, my head itches like crazy and every time I scratch it, another load of hair flies out. Jenn has warned me to keep my head back when I am cooking, otherwise the kids might be getting more than they bargained for in their dinner. What if I get a cold and start sneezing – it will look like a dust cloud.
I honestly thought I wouldn’t have to deal with this side effect until they change my chemo in March (EC is a much stronger poison than Taxol). I was thinking it would be a bit warmer by then too so my poor baldhead wouldn’t freeze. But, heigh ho, its happened so I will have to just deal with it. I hope it doesn’t snow until I get my wig sorted.
I am meeting Maria the “wig lady” at my next chemo appointment on Monday for her to show me her wares. I have heard the NHS wigs are not really designed with the younger woman in mind (Oi! in the case of BC I am considered young…) and I don’t really fancy looking like one of my clients on my Meals on Wheels run, as lovely as they are, most of them are 80 years plus and favour the blue rinsed perm. Hannah wants me to wear one of those Health Lottery wigs – I saw the advert last night, they have five different colours – that’s Monday to Fridays sorted!
Luckily, I had already tried on a few wigs at Suzies in Lakeside last weekend and have chosen one that closely resembles my normal style and colour. Maria told me she will see if it can be obtained via the NHS but, if not, my lovely Dad has offered to buy my new barnet for me. You get the VAT back on wigs and I’d like to see the HM Revenue & Customs man’s face when Donna (my work colleague) puts that particular purchase through on the Company VAT Return, considering we are a private hire coach business.
Okey doke, I am signing off now, as I am ready for breakfast number three.
As always, Onwards & Upwards
Debs x
