Sorry It’s been so long since I wrote, I’ve had a few low points where I physically couldn’t type and then it took me a while to mentally get over it (I’m such a sulk). About 4 weeks ago I had a pretty nasty side effects from the chemo, where my veins in my arm became inflamed. Every time I moved my fingers I would get shooting pains up my hand and wrist. I’m pretty good with pain but by the Sunday it hurt even when I wasn’t moving, I was in tears, holding my arm. I tried the heat mat, nurofen gel and paracetamol and nothing was helping. Short version, I ended up at the hospital where I cried again and was given some oral morphine, unfortunately It didn’t really work, and as I wasn’t an admitted patient I could only have one dose so I had to wait till the pharmacy opened before I could get anymore. I was rocking back in forth in so much pain for 2 hours waiting to get my prescription. I ended up having to triple my dose to get an effect, it didn’t take away the pain but I was finally able to sleep. I needed it regularly for about another three days. I was a bit paranoid as they warned me it was addictive but I was fine and quite happily stopped when the pain was bearable. My arm was still sore by the next chemo day, but I could use it. I had mentioned a Hickmans line to the doctor so I can avoid any more problems with my hands, and he practically laughed at me in that “you googled that shit” kind of way! A hickmans line is a permanent tube in the chest where you can attach the drugs and take them that way. It is used for chemo patients, but I think due to infection risk it wouldn’t be something I would get. Someone mentioned you need to be admitted. However, I have come across it mentioned in blogs, where cancer patients have it. It may be American patients I’m not sure, but I don’t think I’ll be offered it before the end of my treatment. I was a bit stressed and worried how I was going to react to the next dose but they gave me an extra big flush (saline solution at the end) to try and remove the drugs from my veins which has helped so much! I’ve lost some strength in my wrists, it hurts if I hold a cuppa for too long but with small adjustments I can go about my day to day life for the most part.
I’ve got signed off work till the end of my treatment, as typing hurts after a short amount of time, which is why I haven’t been in touch! It’s such a small thing, and I know people deal with joint pain daily in their lives and I empathise with them so much. It really got me down, I felt like I was broken. My mood has improved now and I’m hoping this will be temporary as it can last a while or permanently after chemo. I also felt quite sick this time, during treatment, although I was trying to watch a movie on the iPad which may have been the cause. Asked for a foil pan just in case! Also after I had reflux for about a week. I found the only thing that help sickness is eating (I’m never going to lose weight!) I tried ginger again but I’m just not a fan, sticking to my Wherther’s Originals. To top it off, Oscar got chicken pox the week before the October holidays, the hospital went into a bit of a panic, had to come in for bloods. I thought to myself though, why are you bringing me into a ward with low immunity with a contagious virus? Anyway, they did and thankfully I had the antibodies. Oscar was a trooper too and loved the five baths a day! Two weeks later his older brother got them, worse I must admit but not as bad as google image babies! There were times, I hid from him! I face-timed my sister, hiding in the kitchen whispering, honestly, if I breath in his direction he will start crying like a banshee. Anything he wanted I was just like, yes Noah, whatever you want hunnie, mummy loves you!!! It was over in a few days. Two weeks later Oscar now has Hand, Foot and mouth. Not sure if Noah will catch it, or if I will, all I can do is wait and see, but I’m starting to believe other forces are against me. My work has been amazing as always, I’ve mentioned before about Creina’s army, a group of colleagues that are there to support me, they give me gifts to cheer me up and just genuinely look out for me and check in to see how I’m doing. Well, Inez who is the driving force behind it won a caring award at our annual event, I cried when I saw the video. I’m so happy she has been recognised. I am very lucky I received some amazing elemis products, knitting needles and wool and love to shop vouchers to help towards Christmas. I am slightly embarrassed by their generosity, I just hope they know how grateful I am for their love. Life is keeping me busy, and it’s taking so much longer to recover after chemo. It’s taking over a week and a half now, so I only have a day or two of feeling normal until it starts again. Tomorrow I have chemo bloods and flu jab, then chemo Tuesday. I also have Uni coursework to do this week as well so hoping I can manage to do a decent enough job. So much more has happened but hoping to write more regular now that the pain seems to be managed. Thank you so much to everyone for messages and blog comments of support. It means so much to hear your words so please continue. X x
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Everyone loves a happy ending, ok it’s not the end, I’m not even half way through but I’ve got some good news I’ll share at the end! So sorry I’ve been away for the past few weeks but It’s been really hard. I’ve not made my work and it just felt I was going through the motions getting through each day, and the weeks just merged into one another.
My chemo treatments on the 19th September and 3rd of October took their toll. I was sicker than usual, cramping with diarrhea and the pain in my arms were really bad, so much that I had to take a bath as submerging them in water was the only way to get the pain out, esp of my right arm. I was taking paracetamol but it wasn’t really having much of an effect. What was even more frustrating is the hospital didn’t think this was due to the chemo. Except, I got it every time after chemo in the arm they gave me the chemo in! They agree now it is but they expected it to be local to my hand not up to my shoulders. I know people live with pain like this day to day and I don’t know how they do it. It’s constant and makes you almost shy away from doing anything. My house was like a bombsite and I had two weeks’ worth of ironing piling up and it was just really getting me down. For the first time in a while I was a bit teary and a bit defeated. It was taking me almost a week and a half to recover and for the pain to go away, so I was only having a day or two relief before the process stated again. The week of my chemo treatment on the 3rd of Oct my youngest Oscar got chicken pox and bless him he was a super star and they weren’t so bad. I called the hospital and initially they were fine but later called me back in I needed to travel to Kirkcaldy for bloods despite me being certain I had them before. I couldn’t go local as it was the bank holiday so there would be no bloods transported between hospitals, luckily my sister in law was off and brought myself and Oscar through (I still don’t drive). They clearly didn’t want me there and the people on the ward have low immune systems so I got shuffled into the room, two attempts, but bloods taken. I was slightly stressed, I was due to have a PET scan that week, if this came back negative I wouldn’t be able to go then I wouldn’t be able to get my chemo. I also said to them about the pain in my arm but as it was a bank holiday there was no doctors, only on call for an emergency. So off I went as the disinfected the room I was in. Never got my results back, no phone call, but you get used to that. Off I went for my PET scan, another injection, took a minute of poking about to get in but managed it. Now, a PET scan is with radiation so I was in a room the size of a cupboard by myself for an hour, scanned and sent on my way, again feeling miserable, but at least it was done. Chemo bloods taken on the Monday, I love this nurse, Wham, Bam, done, no messing about! And then hospital the next day for chemo. I dragged myself in, feeling so crap about life. Took five attempts to get my needle in, I mean I was about to tell this nurse to take a short walk, but I think she realised and got another nurse in to get a vein. I was told to avoid my right arm again due to the pain two weeks prior but there was so much messing about with my left she had to use my right. At one stage they were looking at my wrists, which really freaks me out. I don’t even like wearing bracelets on my wrist. Tears streaming down my face I was trying to crack jokes and make it light hearted but I felt, to be honest just hollow, like I was an inanimate object that keeps getting either bloods taken out of me or drugs pumped into me, like a lab rat. I didn’t feel defeated but took a knock the last few weeks. Eventually I tried Ross's sports massage ball on my arm and it seemed to help the muscle pain, and then I did a yoga video on YouTube and that really was a turning point for me. First time in weeks I slept well, and could use my arm again. When I was getting my chemo, I mentioned my pain again to see if I can get any medication for it. I was told to use Nurofen gel instead as oral paracetamol wouldn’t really work. To be honest I felt like slapping him. I was told not to use Nurofen during chemo, I was also told by him to manage my pain with oral paracetamol at home, this was likely when they didn’t believe the pain was chemo related, but to have gone through weeks of pain, doing what the doctor told me to then say, “ya, it doesn’t really help” no shit Sherlock, I’m still angry about it. However, the gel really has worked along with the yoga. Pain I would describe as mild this week. My house is someway normal and the pile of ironing has returned, but that happens every week! It helps my mind knowing I’m on top of it though. And my good news….I knew it was a possibility but didn’t mention it to anyone just in case. They give Hodgkin Lymphoma patients a PET scan between chemo 4 and 5 to see how the treatment is working. Ideally, they want to stop giving you bleomycin, one of the drugs as it causes lung damage. And I got my results just before my last treatment. My cancer is in remission. It was a score of one, the lowest I could have got. My doctor doesn’t want to say it’s gone…but I do 😊 It’s gone(ish). Let’s just say is this was my first scan they would have said I don’t have cancer which is good enough for me! I continue my full chemo treatment, which is normal and I knew from looking at other stories that would be the case. I’m still in the running for a complete cure with no cancer returning. So, I’m still not even half way through my chemo journey but at least I know what ever I go through it’s working. Sorry if this seems rushed, my boys are both napping so I have no time to edit but really wanted to give everyone an update as to how things are going. I’m having a really good week this week. Been out with work colleagues, been to work as well and survived the October school holidays. I was listening to Paloma Faiths new song, “Cry Baby”, and I actually find it so empowering! Those who know me know I’m a crier. Not even a pretty crier. Its turns really ugly, like red face, red eyes, runny nose and squished up face! I hope they don’t mind me saying but my two sisters, Gemma and Judith are the same. We can go from having a normal conversation to crying in .5 of a second. Gemma and I were talking about Doris on the phone a few weeks back and we were laughing, smiling and crying at the same time! Are others like this? Ross is used to my random tears watching tv! However, you know what I’m proud I cry, when I’m happy and sad, when I’m happy for others or when others cry, you know what I cry too! I mightn’t know why they’re crying, but it’s going to happen whether you like it or not! Oh, and I can stop crying just as fast, but sadly the red face and eyes remain for a while after!
Recently someone close to me said “Right I’ve cried now I need to just man up”, but why? Why did we, do we feel we must suppress or bodies natural way of relieving emotions. I’m sure there is stats and research out the that show positive changes in our bodies when we cry, ok our face might be a mess! I’ve heard from many people who talk about they’re mental health issues that the struggle to express their emotions. So, don’t think someone who’s crying is weak, or dramatic or seeking attention, you don’t know, if they cry at anything like me or they are dealing with something and they need a release of emotions. Anyway, have a listen, she says it better anyway! And next time you want to cry over spilt milk, just go for it, there’s nothing wrong it! Thank you, Paloma Faith, for my go to I want to feel ok song x x Thank you everyone for messages yesterday “Doris Day” it really means so much. I was a bit fed up walking in yesterday, it’s hard to keep walking into something that you know will make you feel like crap, but it’s not like I’m not going to turn up! Then life shows you, you know what love, put your big pants on!
My treatment when as normal, BP, temp and weight checked. Bloods are holding up good too! Got my slippers and my blanket on, and we had a window seat this week, all looking good! The was a really nice gentleman across from me, he was sleeping when we arrived “my kind of chemo neighbour!” When the nurses were over he was chatting to the nurse about his farm and how his son was wanting cameras to monitor the cows, and immediately reminded me of my Dad, I almost felt comforted by this man being here. He started feeling a bit nauseous and I noticed they were closely monitor his temp and blood pressure. He was warm and cold, and all very suddenly. He was giving paracetamol as his temp was rising and the nurse was keeping the doctor informed. He suddenly was sick and because of the force he squeezed the foil dish so his vomit went over him as well. I felt helpless because I couldn’t move to help him. As I say all the time the nurses were fab, put a screen up and cleaned him best they could, and were very light hearted about the situation. He was sobbing apologising to the nurse. I tell you know nothing sets me off than a man crying, even now It breaks my heart thinking about him and that there was no one with him. So, you know what, my big pants (new ones) are on! I will make sure I don’t moan (well too much) again walking into that ward because it can always be worse, and likely will become worse as my treatments go on. So I will say to myself, well love, it’s going to be better than the next time! I wanted to write about how I and people close to me reacted to the shave but I first want to tell you about the crazy people who also shaved in support of me losing my hair. You see I have this army, Creina’s army at my work. They arranged to do a sponsored shave. I initially wanted to take part but was advised to do it when I was getting my wig. So, a Sunday after I finished shift we had a coffee morning and some crazy people got their head shaved, full heads and undercuts.
I was very clear to point out if I didn’t have to shave my head I wouldn’t and they are all crazy, but they went ahead. They look amazing and they’ve not told me if they hate it yet! £180 was raised for Macmillan and I was so proud, I welled up a few times during the day. Ross, my husband has been getting the razor to his head in support, we’ll see if this last during winter! You see the support you get from people it amazing and people really want to rally round you. The first day out with my wig was at work on the Saturday. I was a bit nervous, complete opposite to my usually show my new hair off feeling. It was warm and a bit uncomfortable by the end of the day but people really liked it, some thinking it was my hair, they could have been lying but I’ll take it. The person I worried about the most was Noah, my three year old. He is quite sensitive to things, doesn’t like me wearing dark lipstick so I was worried about his reaction. Safe to say he doesn’t particularly like it. I said I got a hair cut like dad but I have new hair too. He asked me to put my new hair on, and does so every once and a while, but he is definitely getting used to seeing me without hair, and pats me on the head like I’m the dog! I don’t know if I will ever wear scarfs out and about, the wig is quite comfortable outside, when your indoors it gets a bit warm. I walked to the bins without anything on the other day and my neighbour nearly died (she doesn’t speak to us), but even then, I felt very self-conscious. I know it’s a temporary thing and not everyone will even know it’s a wig, I just haven’t made my mind up about it yet, maybe I never will, but I love how it has shown me what other people are capable of, and that’s pretty special. It's been a week since I went for the big chop. Tbh I was waiting to see how I was going to react throughout the week before I posted. I had always had the week beginning the 5th Sept in mind for my hairdresser appointment as I was told between treatment two and three it would start. It was the 2nd of Sept I noticed the hair coming out, so I braided my hair and tried to limit brushing etc. I wasn't upset at this point as I had lost hair after I stopped breast feeding both my boys. My hair regrowth from Oscar was only a few inches long. It did however, quickly, become annoying. A cuddle with the boys resulted in hair in their mouth, food prep, sitting up from the couch, it was everywhere. Even if I braided, tied it in a bun, I though how can hair escape but it did. Also, I have loads of hair so realistically I could have my hair coming out for weeks with no-one really noticing. By Tuesday I was brushing my hair before I showered and still blocked the plug hole. I couldn’t wait, knowing it will eventually need to be done. I had already picked my wig, shoulder length, auburn and with a fringe. I had similar hair to this before but didn’t manage the up-keep. Good thing about a wig, fringe doesn’t grow into your eyes and no roots! The color was called “Irish Spice”, made me smile so I had to go for it! Ended up going with my husband and made it into a date night, which rarely happens in our house.
Dougie from Sheds in Dunfermline is amazing, and everyone says so! We were in good spirits, standard, “Well if Britney can do it!” We chatted about all the celeb melt downs while Dougie carefully shaved my head, carefully removing strands before they fell on my lap. It was done, and I kind of liked it! I had a Sinead O’Connor look about me and no weird shape to my head or birthmarks. Ok I wouldn’t op for the shave look but it was here and I looked in the mirror admiring my contoured check bones and newly dyed eyebrows. Not too bad at all. He then fitted my wig and cut into it a little to give it some movement. The problem with wigs thy look very sleek and too good to be true in my opinion, so glad I got it styled a little. Thirty minutes in total and I was done. New wig and new look. It was a bit surreal. I didn’t have the light feeling you get after a blow dry, it felt like I was wearing a tight hat, but I liked the way it looks. I’m not going to say I love it, because I don’t, but I didn’t need to love everything about this, do I? So this is the reason I wanted to write a blog. The information, where is it?
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March 2021
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