A few weeks since my last update as life has taken over recently!
Ive seen haematology, who were going to refer on for advice to some other specialist to find out if I could finally come off Clexane injections and head onto a tablet form. It's also been discovered that I have inherited a blood clotting disorder, Factor 5 Leidon, long story short it makes me more prone to clotting. They say it's inherited, thanks mum 😂👍!! So another little hurdle this year has thrown at me!! So radiotherapy went without an issue, a few minor blips but nothing major. The radiologists over in Southampton were fab, although slightly too much personal space interference (they had to get up close and personal to line up my tattoos with their lasers!) but all in all, all the teams I came across were lovely and supportive. I had a melt down on one of my last rad sessions, they were running late, I was fed up, and tears started rolling during my radiation time, so when the team came back in they were all a bit shocked etc. But hugs and chocolate was prescribed and I chilled out a bit! The accumulation of everything finishing I guess must have gotten on top of me and I was at a low point. Rads finished on the Tuesday morning, and I was due to go to Amsterdam Tuesday night..... Another minor blip, I couldn't go. Medically I was fine, emotionally/psychologically I wasn't. Cue.... Massive melt down in London before returning home and being at one my lowest points of all time. A nights sleep and a flight ticket later, I was on my way to Amsterdam. And this time I made it! Although it wasn't without issue!! Three quarters of my suitcase was drugs/needles/sharps boxes/dressings. And my hand luggage was more drugs/letters and my wig (Wiggy came for its first ever outing just incase I couldn't get through passport control!). So an interview at passport control later and I was allowed to fly! Apparently baldies get questioned more (we're special!!)! Ant came and met me for the first day/night, great time sightseeing, and then when It was time for him to leave.... Anxiety/nerves/no confidence set in once again, and I dreaded it. I was scared. I was nervous. And I just wanted to be in my safe space and go home. A year without getting out and about by myself had paid its toll. But I stayed, and what a fab ten days I had!! Met some incredible people out there who've become great friends, heard stories that will last me a lifetime, and made some fantastic memories. Amsterdam was a blast! I flew back for a day in the middle of the trip for the Venus National Awards, was a very long day, but nice to be back in UK if only for a few hours! So I got back, worked for a few days and then headed straight Upto Edinburgh (another flight!) for Born To Move instructors course, so I can teach little ones to do fun exercise routines! Again another long few days, feeling very isolated, but I got through it and then back to the rock I returned.... Three whole weeks without a hospital, doctor, canulla, or anything in sight or earshot.... Bliss!! The day after I got home... The hospital phone! So back to it I went.... Heart echo on the monday. As my heart had been damaged through the Herceptin drug, they stopped it temporarily to try and make sure all my levels came back to normal. So this scan would see and check to make sure I was ok to go back on to the drugs. Wednesday came and back to oncology for consultant appointment to follow up for rads and to see about the heart! Saw a different consultant today, as Dr Marshall was running so late! So I saw, Dr Fenton, and the only thing I could think when I was sat there was that dog Fenton on YouTube who's chased after by his owner!! However he was a nice bloke, and explained the next steps in treatment.... Finish Herceptin treatment with the help of heart medications, these meds are designed for heart failure, and will drop my blood pressure to put less pressure on my heart & allow it to try and remain in the normal bracket for certain levels. The issue being my left ventricular ejection fraction is currently at 38% instead of the normal 75%. Depending on how my heart then takes back to the Herceptin, the drugs may be temporary, they probably won't be! Reading about the drug, the side effects seem to outweigh the benefits i feel..... I may get gain, palpitations, dizziness, headaches, sickness, swelling of the tongue and throat, trouble breathing and a persistent cough..... All for the sake of being able to be jabbed in the leg every few weeks!! Oh and I guess maybe prevent Cancer coming back!!! So all good fun, and I swear im going to end up being a rattle!! So onto friday, and im back on the chemo suite, waiting to be jabbed! Having had 10 weeks without any stabbings, and 3 complete weeks without hospitals, the heart suddenly sunk with the reminder of the suite and the thought of another needle. Xxx
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It's been a mad few weeks, with VOOM, rads and now the IW festival to contend with!
Stupidity got the better of me, and I decided to enter the VOOM Business Competition just before radiotherapy started, it turned a normal mad week into an extremely crazyily busy mad as a hatter kind of week! However, the plan is to design class programmes for oncology (and other populations!) to provide a safe effective and comfortable environment where exercise can be started or maintained throughout treatment. We suddenly ended up on every press available on the island, and I found myself receiving several facebook messages and emails regarding the idea, and how Id touched on people's hearts etc. It's been overwhelming the support we received. Along came the pitch on Wednesday, my supposed first day of rads which I put off for the sake of the pitch!! An incredible experience pitching in front of the business entrepreneurs, and mingling amongst other business owners also pitching. And being called an inspiration by Peter Kelly himself has to be my highlight! A week went by of waiting to hear the results, and sadly we didn't make it any further, however from over 3000 entries to make the top 80.... Im pretty dam chuffed with that!! And by no means does this mean the plan gets forgotten about.... Still going to do it whether Sir Rich wants to help me out or not!! I just may get rads out the way first!!! Finally radiotherapy started the thursday after the pitch and so far has been fairly easy! Apart from the extra 4 hours of travelling each day, extra fatigue, migraine style headaches, and sunburn.... It's actually so much easier than chemo (something that everyone keeps telling you throughout!). You get to know your rads team really well seeing them everyday, and although they look really young (think im getting old!) theyre all super friendly and caring. The radiation machine is different to what I expected, although im not completely sure what that was anymore! It reminds me of a big eye robot kind of thing from a sci fi movie, which with chemo brain playing havoc recently, can't remember at all what it's called!! So two hours getting there, and so far Ive checked in and not even got bum to waiting area chair before ive been called through to my machine. Takes about 10 minutes to align me on the machine, with my marker tatoos having laser lines going through them to make sure the radiation is hitting the exact same areas each time, for then 5 minutes of treatment, followed by another two hours travel home! Long ass way for 5 minutes!! However the team at Soton General are just as lovely as the St Mary's team. A sunny weekend I got out and enjoyed finally. Although depressing moments of the week came when the summer wardrobe made an appearance, and no shorts still fit me. Ive got two and a half stone to lose again..... And I can't do physical activity yet!! Going to be a long summer I feel!!! Also having a conversation with someone about relationships, and he kindly told me ''I need hair to fall in love'', that's when rock bottom hit for this week and got me thinking.... Surely people see past hair?? It's just what's on your head no?? Surely its what's on the inside not just the outside?! Surely it shouldn't matter?!? Gobsmacked to say the least, I didn't realise there was such an issue with having a shiner, obviously hair and looks mean more to people than a big heart and honesty! One of the main side effects of rads is fatigue. The hardest part to explain to someone.... Im not sleepy tired (yes Id happily go back to bed right this moment in time!) but it's not sleepiness, my entire body aches, it feel like I have zero energy what so ever. Completely fatigued.... Already.... Only another three weeks to go!! Come on body, me and you have been through so much already.... Just a little further to go!! Tuesday I had another ECG at St Mary's, only a couple of weeks since my last one I thought this to be a bit strange. Yesterday I was due my Herceptin appointment up on Chemo Suite. However I got sent back to Oncology to see Doc Marshall to get results of ECG before I'm allowed any more Herceptin. My heart hasn't come back to normal levels that theyd expect following each round of Herceptin, so they've stopped the Herceptin, the drug to help prevent reoccurrence, for the time being hopefully giving my heart a chance to recover. If it doesn't then it'll be more drugs that I'll end up taking! It's kind of now set my head a wash with worry that the drugs meant to help prevent it from coming back have been stopped.... And it's going to come back!! But..... We shall see what happens over the next few months! I came into this whole illness, a fit healthy individual.... Ive now got a dodgy heart, a scarred body and a ton load of drugs everyday.... It all seems a bit backwards!! So a weekend of rads, iw festival and the 10k Race For Life down in Bournemouth on Sunday (yes im a tad of a loon!). Im currently on 5/19 rads, today will be my 6th.... But the bigger battle for the next few days of treatment, will be with the festival reprobates on the ferry..... So if you don't hear from me again, ive gotten my self locked up for pushing a festivaller overboard!! I don't think tents, wellies and I are going to get on this weekend! ️Xxx |
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February 2017
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