Wow, it has been a long old while since I wrote a blog post. There was very little to write about in the time that has passed. Life goes on just as the snowdrops grow and die in winter and turn into daffodils in Spring which die and turn into a plethora of bright, multicoloured blooms in Summer. The world doesn't stop moving; every day will end and another will begin.
Next month will be two years since I had my stem cell transplant. Two years. In January 2017 at the very beginning of my treatment, I had a rather uncomfortable scan of my reproductive parts because - I'm not sure if many people are aware - chemotherapy drugs can have a massive effect on fertility. They work by destroying cells and therefore can damage premature egg cells. The reproductive consultant was very gentle with his wording, but told me very simply that there were not that many follicles (needed to produce eggs) already in existence inside me. Many people had considerably more. Typically me - not only did my body turn against itself to grow two types of cancers, it gave me the worst baseline for my predicted fertility after treatment. In some cases, the doctors are able to preserve eggs or ovarian tissue by freezing for after treatment. They unfortunately couldn't with me; the Beasty was just too far gone to waste any time. The news had been a hard kick in the gut, but any grieving had to be shelved as we needed all of our focus to be on the chemotherapy, which came with its own set of problems. I had some of the most foul liquid dripped inside my veins. Sometimes I can still taste the chemicals in the back of my throat when my mind wanders off to the past and it sends shudders down my spine. My faith has been a rock to hold onto the last few years. With every bout of anxiety while I'm sat on a bus, worship music has eased my worries. With every feeling of being not good enough, peace has been given, pouring over me like healing oil and the negativity has been banished away until the next time. I know many people do not believe in miracles anymore. This is all I can say: I would like to introduce you to the strongest, mightiest little swimmer and egg combination that has ever graced the planet, 'Sproglette'.
I don't know how they survived through the healing crap that was thrown into my body, but I'll take it!
Every single baby is a miracle. Some people just can't have children; my heart absolutely breaks for them because I was in that very position and struggling to come to terms with it. I believe it is very rare for someone to become pregnant after a stem cell transplant, completely naturally with no intervention. Anyway, I felt this was a nice way to introduce Bub to the world as he/she has been cooking away for 15 weeks and it's supposedly a 'safe time'. I didn't quite believe it was legit until I saw Sproglette squirming around on the viewer at 12 weeks and they were full of beans! To be completely honest in this post, I'm scared to death with every scan that I'm going to go in and something will have happened to Bub. I don't think I'll be able to relax until I have them in my arms (I don't even mind the fact that Call the Midwife has filled me dread at the thought of labour and all its associated pain and grossness). I would appreciate your prayers that we continue to grow and be healthy. I'm struggling with a chest infection at the moment and it has knocked me for six, but at least I'm able to eat and drink well enough for bub. In fact, I made some homemade carrot and coriander soup for lunch today (get me!) only... preggo brain made me forget one of the key ingredients: coriander. So it was just carrot soup, but still tasty and full of vitamins. We're on the right track even though the days can be hard. My emotions are all over the place and some days I don't want to get out of bed, I just want to cry and sob my heart out and others I'm on top of the world. I was listening to Amy McDonald's 'Dream on' on the bus the other day and it just made me realise: every day I get to spend carrying this little one is a day to be treasured. Even if it gets cut short which I pray and pray and pray it won't, I've still been a mother. That's all for now, but I think that's enough! Have a listen to the song below. Love, Em
7 Comments
Now that I have your attention. Hehe. This blog post is very accurately timed, if I do say so myself. It is precisely one year, one month and 5 days to the hour that they replaced my stem cells. I was very out of it on antihistamines so the precise time would be a tad difficult to get hold of. They had a weird effect on me that day - though they shot me up with them slowly like I asked, my eyes felt like they were continuously wanting to be open despite also feeling tremendously tired at the same time. It was actually quite anxiety-inducing, but luckily for me I had my mum in with me attempting to keep me calm. Though I was unsure at the time, I am glad she managed to take a few photos of it all. How odd to have part of your body frozen and then thawed and put back into you in the form of a drip right next to your head. Anyway, happy birthday to my stem cells. Hopefully they are doing their job well. The hospital team are very happy with my recent blood results, so I presume things are all good. My consultant appointments are four-monthly now, and let me tell you: it has been a long four months. And it's not even over yet. As I'm back at work, I had to rearrange my psychologist appointment which was due last week but I forgot all about it. I'm not sure what that shows; am I just plodding along not needing to go and see her? I don't think so. She helps me sort out how I feel - not just about cancer, but about all of the changes in my life and how they are affecting me. At the moment, I still need to visit her for an hour every couple of months to unpack. There is no shame in going to talk to somebody. Look, I have used BOLD, ITALICS AND UNDERLINE to make my point. There are too many people that are not getting help they need because of a variety of reasons and I beg of you, if you are struggling with your mental health, just go to your GP or ring a helpline or reach out to someone. Life can feel like the weather right now: grey, dull, and icy cold but we should always remember that Spring will come and the thermometer will increase, the birds will sing again and the roses will grow. A member of our family passed away suddenly recently but what I will take away from his funeral is these words in a thick Yorkshire accent: 'It'll be reet' and that is something to remember. With that in mind, I thought I might share with you a few things that I am happy to be alive to have seen and experienced. Some may be small, but their importance is great. This month on November 11th was 100 years since Armistice Day 1918. An amazing team of people put together this awe-inspiring display of handmade poppies in St Mary's Church in Warwick. It was beautiful and touching to see so many people passing through the doors just to see the display - I overheard voices from Canada, Spain, Germany. Something we should not forget is that the people who died could have been your brother, sister, cousin, aunty, grandma, grandad: they were regular people like you and me. Wearing the poppy does not glorify war, it is a symbol that those precious hearts stopped beating for a reason. Over 62,000 poppies were lovingly hand crafted - including six of my own that I made in hospital and I feel emotional that I was able to bring my little addition there. I was able to celebrate my mother in law's 'big birthday' on the Dorset coast, surrounded by family. Though it was colder than an eskimos nose, we went for a walk along the sea front. What a marvel to behold. It was breathtaking - literally and figuratively - as the icy cold air snapped at our lungs and hands and noses. I'd never seen a beach in the snow before and now I can say I've ticked it off a bucket list I didn't realise I had. I celebrated our third wedding anniversary. We celebrated it... with a trip to Sandhurst to look around. Though very impressive, it was not how I'd imagined spending our third. However, we were together and that's important. Nothing can get you if you stick together. I thought I was actually going to die from overloaded bladder watching the 2 hour Commandants parade and not being able to use the toilet until after. Why my body decided then was the perfect time to need to pee I have no idea. Our friends realised this was how we'd spent the day and kindly and lovingly paid for us to spend a night at Brandon Hall where we had our reception. This is how we were welcomed: A good friend of ours took very good care of me while I was spending a lot of time alone. I spent precious time with her daughter, with fun bath times and reading stories before bed. Moments like this are to be treasured. Finally, I have enjoyed myself so much preparing for my charity afternoon tea. I have spent many evenings and afternoons decorating jars with false snow, hot glue gunning snow curtains and planning food. Now, we all love a good afternoon tea with cakes, scones and sandwiches and, most importantly, tea and coffee. Come and enjoy these with me, with extras like watching dancers and hearing carols being sung! We have also had such generosity from local businesses with raffle prizes being donated from a flying lesson, to a Pandora bracelet. Join in by buying a ticket from me or buy some raffle tickets if you can't come on the day! It goes towards making the lives of patients with cancer at UHCW more pleasant while in hospital. The staff and volunteers do such a fantastic job at keeping spirits high: let's give back. Alternatively, if you want to donate anything to our raffle, that would be amazing. Lastly, a look at my wondrous and amusing hair growth. I'm here and alive to be able to grow this mop! If anyone with curly hair has any suggestions for caring for it... please let me know. With love,
Emma I realise I have been very lax with updating my blog. I just haven't felt like I had anything new to add to it; I'm plodding on, attempting to adapt to this new normal the best I can. Unfortunately, I wasn't able to see the New Year in the way that was appropriate for the end of a year of treatment, but the way I did spent it was poignant. I began 2018 the way that I began 2017 - in a hospital bed, with my husband at my side, annoying me and loving me, simultaneously. The only differences this year were the various Warhammer projects strewn across my bed-table and that he wasn't able to stay the night as I was on Ward 35, where they are stricter with visiting. When the clock struck midnight, I have to say I was a bit emotional: I was sad that I wasn't celebrating at home - with family and friends - and I was aching for the past year to have just been a bad dream and I was joyous that I was around to welcome in the new year and I was so tired because of the infection rattling around my body and I was sick of the bodily reactions to antibiotics, it was no wonder the tears were freely flowing. The past five months since have flown by, though I have just gotten around to having my first half a day back at work! It's only taken me, what... 15 months? A bloody long holiday. I jest, you can imagine that it was no holiday and not a walk in the park. Though I remember the fear and trepidation from it all, the treatments, the injections, the blood tests, the scans, the results - the flashbacks that decide to pop up out of nowhere - the memory of it is like watching a film. Every so often, thoughts of how poorly I was in December 2016, when I was coughing up blood every morning, appear in my head I have to remind myself that I am not in that same position anymore and I am full of disbelief that I did as much as I did while Beasty was there. I find myself saying things like 'Wow, I can't believe that I was nursing for the Implant clinic when I was feeling so rotten!' and that's something that I just have to acknowledge and shelve in the dealt-with folder. I feel free to say that I'm seeing an NHS psychologist occasionally who I spend an hour with unpacking my thoughts and feelings about life. She is very good at making me think differently about the situation and makes me ask different questions. Every time I go I get asked if I've been able to start work yet! Next time I go I can say 'YES' finally. I didn't realise this, and many of you may not too, but chemotherapy, and stem-cell transplants in particular, can wipe out any immunisations you had previous to the treatment. I have been given a list of childhood vaccinations that I am to have again after 12 months, so come October time it's going to be fun, isn't it! Polio, TB, Tetanus, Pneumococcal, Meningitis (I think), diphtheria. In order to work as a dental nurse (yes, I finally registered! I'm on a register... wahey) I have to have a Hepatitis B vaccination which is not guaranteed to work. Luckily, I was able to have this at 6 months post transplant or I may not have been able to get back to work at all. I'm currently on vaccine number 3 out of 3, as the kind occupational health nurse shimmied me to an accelerated course so I don't have to wait as long to return to work. I have to wait 6 weeks from the final injection for a blood test for immunity - which, I have been warned by my consultant, may never happen. But I can try. God loves a trier! Life has been recovering. I've been enjoying the sunshine in our new house and garden. Oh yes, our new house. A HOUSE. We have been living in a flat that was terribly built; you may have heard about it if you have watched BBC Midlands News, our building had internal structure problems where something 'wasn't tied to a wooden frame' and it resulted in us being evicted from the flat as all occupants were asked to re-locate for 6 months plus while the work was completed. The shared owners were given a set amount by the NHBC to find somewhere else to live on them, but we were given notice as tenants. We did, however, have our new deposit paid for us and a moving van. So skip forward a couple of weeks and we finally used my husband's Christmas present from December 2016: a BBQ. The poor, lovely, lovely man lugged a BBQ in to the hospital as it was wrapped up and he didn't know what it was, but wanted to bring all the presents into the hospital for me to be able to open them all on Christmas Day (Along with a TV, Xbox 360 and loads of PJ's for me!). That is the kind of man he is, the man that people sometimes don't see. There's a hard shell on the exterior but inside a heart of gold wrapped up with a witty sense of humour and a bow of generous spirit. Now he finally has a lawn to look after again, even though at the moment the sparse look of it reminds me of something......... see below........ I just have one tiny favour to ask, please. I'm dealing with many issues surrounding how I look and feel (mainly caused by weight gain!) and one of the things that is getting me down is how my hair looks as it's growing in. It is very kind of you all to say how lovely my curls are and how great my hair looks and I know it's being said from the kindest of places, but it's difficult to be reminded of it all the time. I don't feel like myself right now and having such a vastly different hair style and colour can get me down. Once it's passed the half-stages and I can do more with it, please feel free to mention it and compliment if you'd like. Just be thought-full. Thank you! I haven't updated my blog in a while. It's been difficult processing all the emotions and feelings coming up and in hindsight writing this earlier may have helped. My stem cell transplant finished and I was sent home feeling mostly myself again with a huge dose of lethargy mixed in. My response to the chemotherapy was entirely normal but it felt torturous. I was scared that my body wouldn't handle it, though I knew to trust the doctors knew what they were doing. Now it seems they do a stem cell nearly every week!
I'm writing this from home now after a 7 night stay at Chez UHCW on both ward 35 and 34. I am very glad that they came to rescue me to put me back on the ward I knew. I don't have anything against the nurses and staff on ward 35, but they don't know me very well and I panic when I don't feel like anyone knows whats wrong with me. I had trouble breathing walking around for about a week or so but I started to worry and jump to the worst conclusion when I was taking deep gasps when I got up the stairs to our flat as it was too reminiscent of the previous December. I thought, 'It cannot possibly come back at the exact time, that would be just my rotten luck' so far so good, this doesn't seem the case. When I thought I could have had all the unpleasant procedures on offer, they blindside me with a bronchoscopy (where they use a camera to search your lungs and sometimes wash them to collect bacteria samples) and have the most painful blood test I've ever had to check my arterial oxygen. My oxygen levels were pretty poor when I got into hospital, the doctor had an ambulance take me from my GP practice to A&E as she was concerned about sepsis and my pulse was running high, indicating an infection. Along with the pains in my chest and back, let's just say I was feeling very rough. They started me on strong antibiotics immediately and took me for an x-ray and CT Scan. They have a best educated guess at what the infection is from the pattern on the CT scan but they weren't able to get any samples to be positive. They are working from the notion that they started a certain antibiotic and it has reduced infection markers in my blood, therefore it must be the right one. Now I'm home I have to take 14 antibiotic tablets a day and 4 steroids. (*Gulp*). I think it will take me some time to recover. BUT! On the positive side, I am here, at home, in the run up to Christmas enjoying the festivities. Vince decorated the flat with a tree and fairy lights and stockings. Mum decorated my hospital room with fairy lights and battery candles so it looked pretty. We have to do all we can to make the most of the situations we find ourselves in or we'll just drown in what if's. Plus - my hair is growing! Today I am + day 19 from the day I was given my insurance policy stem cells.
I have been unable to bring myself to talk about how the process has gone because mentally I am dealing with a lot of emotions all at once and it's hard to come to terms with all that I have been through this year. Randomly I will be hit by a steam train of realisations and things I have put on the back burner come crawling out of the crevices of my mind. The past few weeks has been extremely difficult mentally and physically, though I have been at the kinder end of side effects and I know of others who have had the process be far more difficult than mine. I'm going to be very open and honest about my side effects because if I was another person researching - as I had done before my stem cell transplant - I would want all the facts so I could be prepared. I didn't feel prepared for what happened and I was taken by surprise. Though I was warned of potential side effects, there is no way that anyone can actually prepare you for reality because it is often very different. I felt as though my dignity had been left at the hospital door when I had my chemotherapy. The high doses given in the regime called 'BEAM' were designed to knock my body back to zero; to hopefully eliminate any stray cancer cells that dared to stay put. I have been through five different chemotherapy regimes and my body has taken me by surprise by the strength it has shown during each and every one. Let's be perfectly honest, chemotherapy is medicine designed to poison the body. The drugs have been made kinder over the past decade but they still do the purpose they are meant to: to kill cells. They are called cytotoxic drugs, this literally means toxic to cells. I remember Vince telling me this very early into my treatment and it has stuck in my mind. Unfortunately most chemotherapy drugs aren't targeted to specific cancer cells, though the science behind them is beyond my comprehension so I'm not 100% on this. There are new advancements in oncology treatments that involve using antibodies as targeted therapy. I myself have received a drug called 'Rituximab'. This is a monoclonal antibody therapy that targets specific 'CD20' proteins on the surface of leukaemia and lymphoma cells and very cleverly marks them ready for the immune system to attack. It uses your own immune system to fight the cancer cells. How bloody cool is that? Unfortunately this therapy can only be used in some types of cancer, but for those it can be used for it seems to be very effective in most cases. Anyway, I'm digressing because it's a really interesting topic to research and understand! I would not have any clue about it had I not been through the crappy hoo-ha of cancer treatment. I think that I am lucky in a way that I am inclined to read, research and understand what is going on as it has helped me deal with the situation. I want to know what they are putting into my body. I want to know how the treatment will work, in theory. However, I am realistic. I know that treatment doesn't always work and it is a hard slog. I have felt the loss of friends that had struck a cord in my heart. My heart aches for the family members of those that aren't as lucky as I have been. I truly hope this was the last time I have had to be an inpatient on Ward 34, though I won't forget the way I have been treated by the staff and volunteers that tenderly care for all of the patients under their wings. I had two hugs from nurses that had been with me for all of my treatment and had seen me through some hard days and some better days and some hard nights and some better nights. I always felt protected and safe under their care and I think this is what helped ease my anxiety of being in hospital. When I think back to my mental state at the end of last year and the amount of anxiety I had about everything I am proud of myself for taking whatever has been thrown my way and grabbing it by the horns. However, I could not have done it as well by myself. It took a team, a personal army, knowledgable and clever medical doctors and nurses and health care assistants, my family and friends, my husband, my God. In my mind I'm picturing everyone keeping a raft afloat in a storm. The side effects of this latest chemotherapy were very unpleasant. Imagine your worst stomach bug and then double it. Apologies if this is too much information but I was constantly running to the toilet with diarrhoea and had stomach cramps that felt like my stomach was being ripped open. It lasted for about 11 days after the final chemotherapy drug Melphalan. A mean, mean drug and I got off lightly with my side effect. I lost all my appetite and we were trying everything to see if it would encourage me to eat. Mum brought me party snack food as it's some of my favourite food - mini chicken Kievs, sausage rolls, mini scotch eggs, cocktail sausages - and it worked a little. My aunty and cousin came to visit me by surprise and brought with them a tonne of crisps which I was so thankful for. It turned out I wasn't hungry until Vince was eating a packet of Wotsits and I could smell them and forced him to share the packet with me. I had a few and that was enough, but it triggered being able to eat more Wotsits and then the cocktail sausages. What was really rotten though was my favourite sweet chocolate tasted like when you don't manage to swallow a tablet with enough water and it melts on your tongue. Blarrrrrrgh *shudder* (Luckily my chocolate birthday cake mum worked so hard on was just in time before this all kicked in!) One of the biggest side effects of Melphalan is oral mucositis (painful ulcers in the mouth and throat) and I avoided this thankfully. I think I surprised the doctors with my lack of painful mouth. The actual chemotherapy I handled well physically. Mentally I struggled with seeing the bags up constantly because I have an association between the red bags (used to protect the drugs from light) and feeling sick so as soon as I see the bags I have to distract myself or I begin to feel nauseous. Reactions to chemotherapy drugs are so individual that doctors cannot predict if one person will have a reaction in comparison with another patient. One time you may have a certain drug and be fine and another you may have the same drug and have a reaction. This is one of the things that I was most nervous and aware of when the nurses would put the bags up. This time I fooled myself into thinking I was going to avoid any side effects because I handled the chemotherapy better than my other regimes. I wanted to believe this as I had my birthday coming up and I knew I would be in hospital for it. Day + 6 from my stem cell transfusion, my beautiful, lovely, thoughtful mum brought my birthday into the hospital as best she could. She brought me banners, a fantastic birthday cake, a balloon with co-ordinated blue polkadot cups and plates and cutlery, two bottles of special fizzy J20 drinks and a beautiful hamper she made of sweets and treats. She knows I love baskets. It had a really nice basket! That I get to keep! I can't put into words how much my mum means to me and my sisters. I love you mum. This quote is very accurate: 'Mothers day is hard when your mum deserves an island but all you can afford is a candle' if I could, I'd buy you an island. Another moment that I will treasure from my birthday 'inside' is that the staff on ward 34 - my friends - came and sang happy birthday to me. I...er.... have always been very socially awkward and being sung to and put on the spot has always made me turn beetroot and not know where to look. Unfortunately this happened, but I still appreciated how kind it was of them. It made my heart glow. I was not in the right place for many visitors on my birthday. I am sorry to those that I told not to come visit. It wasn't that I didn't want to see you but I did want to keep as much of my dignity as possible and the side effect of the chemotherapy was not something I wanted to share with a lot of people. Vince, mum and my dad along with the nurses and doctors were the only ones to see. As much as I would have loved to be visited it was just not good for me mentally to worry, as I would naturally do, about whether or not my visitors could hear me on the toilet. I could just about cope with Vince, mum and dad hearing. Vince and mum had no choice but to as I needed them. I broke down at points because I was in so much pain with my stomach and it was distressing for me to go through, so it must have been distressing to watch and for that I am sorry that I needed the comfort in that time. I was on 60mg codeine four times a day. The plus side of this is it sent me straight to sleep but I am not a big fan of the dizzy feeling associated with certain drugs like codeine and the anti-emetic(sickness) Cyclazine. I am so grateful to both Vince and mum for staying with me overnight as it was so calming to just know someone I loved was nearby. I did develop an infection not long after my stem cells were transfused and Vince asleep in the same room made it easier to deal with the hassles of having blood cultures taken at 2am. The nurse couldn't find my veins to take blood and she didn't want me to hate her so she got someone who found it easier than she did to take blood. I found I loved her a lot more for that than if she tried and hurt me in the process. Anyway now I'm home! I think I shocked them all with how quickly I was well enough to return home. I got the good news on Friday that my stem cells seem to be working and doing as they should. I was still a little bit neutropenic on Friday but hopefully my levels will have risen so I am no longer neutropenic, which will be helpful for the cold and cough I picked up that's made me feel rotten. Can I just big up the cold sore tablets I have been given?! I developed a big sore coldsore on Saturday and today it has shrunk to barely there thanks to the anti-viral tablet Acyclovir I am taking. Thank you modern medicine. I have struggled with coldsores for so many years... so many years of painful lips and ugly blisters it is such a relief to have an answer to it. I am aware it will never actually get rid of the herpes virus but if it keeps the sores away I'll take that. I think I have rambled on an awful lot this blog post, but there was a lot to catch up on! and it was very cathartic to actually talk about what's gone on. I have a few pictures to share with you now. My mum insists on taking photographs and I'm always grumpy at the time but then I am grateful later on when I can see them and look back when I'm in a better frame of mind. So they are at the bottom of this post. :) All in all, I am recovering well from the chemotherapy and it seems as though my stem cells are doing as they should. I have another blood test tomorrow to check how it's going but if my platelets are a good level I may be having my central line taken out this week. That's going to feel very final. I am not looking forward to the blood tests without it in, however! It's going to take a lot of getting used to the new normal. My old normal is no longer going to work. It doesn't have to be a bad thing, there were many things in my old normal that were not healthy and perhaps now is a chance to adapt and get over them. Deep breath. Inhale... exhale. Warning: This post may contain images you don't really want to see! If you're squeamish I would recommend not looking at them! I have had an interesting couple of weeks. When I was given a list of dates and a time frame for all of my tests and my stem cell collection I was mildly excited. Excited may not be the best word. I was eager to get on the move with this new treatment so I could get on with my life. So. You probably remember me talking about when I had my first central line putting in and how traumatic it was. It was the worst procedure that I have been through so far. Having the Bard line placed was only marginally less traumatic as the room setting was more relaxed and I knew what to expect. The only thing that was an issue when I had my original line taken out was how painful it was to receive local anaesthetic to my chest area. It's a most sensitive area to have a needle stuck into! It was also a bizarre experience to have someone cut into your chest while you cannot feel a thing (now don't get me wrong - I am so relieved I couldn't feel it). The new line is far bigger than my old one and it is very noticeable. One week later I am just coming out in extremely yellow conspicuous bruising. I've added a little slideshow to show the progress over the past week but I repeat DO NOT LOOK IF YOU ARE NOT A FRIEND OF BLOOD I cannot be responsible if you faint on your keyboard. I have lost a lot of blood the past week and ruined several tops and bled all over our passenger car seat. That'll be interesting to try and get out. The stem cell collection was fairly interesting, though I was not in much of a position to take it in having had very little sleep the two nights before with an overnight wait in A&E, which if you have ever done it, you know it can be very draining not only for the patient but the companion too. To go there was the right thing to do at the time as there could have been any number of reasons why the line was misbehaving so much. However, a drain it was and I was in no fit state to pay attention to what the kind nurse was saying when he was explaining how the apheresis machine worked. If you're interested, one end of the line goes into your body and the other draws blood out of your body. The machine spins the blood separating the cells and then transfers them to a bag. The process took about about 4.5 hours. Unluckily they were short by a small amount which meant I had to make two trips to Warwick Hospital and Vince's boss was kind enough to let him stay with me for both days and then afterwards to look after me. It's a good job he did stay with me; I was in no fit state to look after myself with the amount of blood coming out of my line site. He dressed, re-dressed and then dressed it again and re-dressed it constantly all while exhausted from working all hours. We regularly exhausted our supply of gauze and dressings and by this point I was not thinking I would be well enough to go to my brother in law's passing out parade Friday just gone. Thursday I made the trip into hospital thanks to a friend kindly giving me a lift and the doctors face when she saw how much I had bled was a picture. A suggestion from one of the specialist nurses was finally what seemed to have stemmed the bleeding: an old school method of placing a transexamic acid soaked gauze over the site. FINALLY, yesterday it worked and I no longer was bleeding and it scabbed over. The nurse was very complimentary about Vince's dressing skills and asked if he wanted a job there! The very way he dressed the wound definitely helped with finally stemming the bleeding. I managed to get a good night's sleep Thursday night thanks to being wrapped up tight and get to my brother in law's passing out parade. I also got to wake up to the beautiful setting of the area we were staying in Catterick, Yorkshire. It makes me want to explore the area a bit more (but then it could have just been a glorious day! who know's what it's like on a wet miserable rainy day. Oh, Vince says - and I quote - "it's the most foul, 'orrible, disgusting place in the world". He's also compared it to hell with some fairly colourful language, typical squaddie). Ending on a positive tone, here are some things that have made me smile these past couple of weeks:
I should have mentioned that bit first shouldn't I? According to my last PET scan two weeks ago, I am in complete remission. So far so good. It's the best scenario for going into a stem cell treatment! Prayers are being answered! We had a celebratory KFC that night. I just wanted to add a little extra section here. A little tribute to a man that was a good friend of our family for many years. My uncle Derek and aunty Pat have been in my life for all the time I can remember. I remember going to Ladram Bay in Devon and staying in their caravan when I was a wee one, (which is why I bullied Vince into taking me there for our honeymoon, not that he complained). I remember spending evenings with my mum and her partner and aunty Pat and Uncle Derek watching their son sing in working men's clubs; I especially remember going on Christmas Eve's then going home and waking up to Santa coming. He lost his own fight with cancer recently and with my own treatment i couldn't go and see him. To top it all I was unable even to go to his funeral and pay my respects as it clashed with my stem cell collection, which was heartbreaking. Cancer has no boundaries and leaves a trail of wreckage in its wake as it moves through our families. When we are hit by the cancer stick we have to make sure we never allow it to beat us down. I want to reach out to you to support the various cancer charities wherever you can. Macmillan coffee mornings, Cancer Research, the Lymphoma Association - all the awareness campaigns please take notice of them and the symptoms they describe. It is far easier to cure an early diagnosis than treat it when it's too late. Uncle Derek will be in my thoughts and has a space in my heart as will his family. Yuck. What a week it's been. This week I've been living chez UHCW as they flood me with strong antibiotics. Neutropenic (I accidently wrote neutropenis there) sepsis is sneaky and doesn't always appear in traditional ways! I didn't feel as poorly has I have previously when I've been infected where my body trembles with fever and rigors set in. I knew something wasn't right though; my face felt 'hot' inside which I've had before with a tooth infection. That and I texted my mum desperately wanted to come round to be looked after. That doesn't tend to happen unless I'm feeling utterly pants.
I cannot praise my specialist nurse enough. She is worth her weight in gold. We phoned her at 11.30am and within the hour they were getting me hooked up to a drip in the Haematology day unit ready to give me tazocin and gentamycin. The ward shuffled beds around and I was able to be admitted so quickly. This was quite different to previous times when I've been to A&E with sepsis where it's been hours that I've been sat. To be fair, when I produce my red card the staff do their best to scoot me up the queue and get me into a side cubicle. I've noticed many dirty looks when I've been called in quickly. Water off a ducks back really - I know that it's very dangerous if I wait too long and the threat of sepsis increases with time. The red card is supposed to ensure that I am given the right antibiotics within the hour of me presenting at A&E. However, I bypassed the long waiting time thanks to the specialist bone marrow transplant nurse. Speaking of bone marrow transplants - eeeeeeeee. Things are progressing quickly. I have a PET scan at 8.45am on Monday morning, a kidney function test at 8.15am Tuesday and line out Tuesday (they do like to give me early appointments...), Wednesday heart echo and lung function test and blood tests & hickman line insertion on Friday. My stem cell collection should be on either 2/3rd October where I have to go to a new hospital in Warwick. I'm so glad to have a timetable so I can actually schedule lifts and well, life. I have to stab myself with an injection from the 29th September until the 2nd Ocotober to encourage my body to produce extra stem cells in preparation for the collection (I much prefer the term collection rather than harvest... harvest I imagine to be like an alien film with them harvesting human body parts). Plus points for this week?
Just a short blog today to tell you a disturbing, slightly amusing option that I was given at my hospital appointment on Tuesday that made me glad they are constantly improving their treatments. So, I think I have mentioned that I will have to have my central line replaced as they can't harvest my stem cells through my Hickman line, it has to be bigger (amusingly, I kept calling it a 'Barbed line' and when I said it to the doctor in all seriousness, hilarity ensued. It's not barbed, it's barred(?) I think, barbed sounds like a hideous torture device). The doctors and nurses know me really well so they didn't give me this option because they knew my reaction would be as it was. The option was to keep my central line in...
and have another inserted into my groin. My... groin. Yep, you read that correct. They would put a central line into a big vein somewhere down there. I think I actually physically shuddered. My reaction was spot on to what they thought it would be. Apparently, this is how they used to do it all the time for stem cells. I feel a bit faint thinking about it. Needless to say, I'm taking the original plan of having it removed - waiting about a week for it to heal - then having the line with the bigger lumens put in. The stem cell specialist nurse is ever so lovely though, so caring and friendly. I hope I can be nice to her when she's taking my line out, because the idea of it fills me with *shudder* On the plus side, I'm feeling a lot brighter now it's been more than a week after my chemotherapy finished. I'm still quite tired and I'm definitely neutropenic so keeping an eye out for infections and my ears still ring from the Cisplatin but I'm doing much better. :) I don't take very easy to asking for help, but I have started a crowdfunding page to try and get some money together for a macbook/design software for my studies as we don't have much money to live on right now, let alone invest in equipment. Please take a look and share if you can? It would mean the world. Thank you <3
Today's post might be a hard one to write. I'm going to be honest here and say you know what? I'm feeling quite down right now. I have cancer and I'm going through difficult treatment, with difficult effects and it's difficult to be positive all the time. I think by pretending to myself and the world sometimes that it adds to the idea that life should be idyllic and happy and if I'm not feeling that way then something is wrong with me.
It's normal, isn't it? Everyone has moments where they really feel like the sh*t has hit the fan or things have gone so far wrong that you worry then will never right again, when the wheels fall off and you just think - hold on for just a moment, just what even is the point of being bothered? What does it matter? It's okay to have those moments because it's what comes after them that counts. It can go either way - north or south or somewhere in the middle - depending on your attitudes, thoughts and actions. No matter how far south you go though there will always be room for maneuver, some wiggle room in the depths of the deepest darkest winter. It can start with the simplest of thoughts or actions: today, I am going to sit up in my bed instead of lying down. I am going to take the facial cleanser that has been gathering dust on my bedside table, take a clean cotton pad and wipe the detritus of my face until I feel human again. I will take the toner and moisturiser and give the bottles a new shake of life. Today - a shower was too much effort, but it's okay because tomorrow is a new day and a new attempt. And when I get that shower, it will be the best shower I have ever had because I will revel in just feeling the warmth of the water down my back and through the new hair growth on my head. I will sit down and feel as though I'm having a bath despite not being allowed one for months on end. Sometimes, I will even sing a worship song or two, just quietly so it's only between myself and God. A quiet's moment peace even if the rest of the day is a write off. Being in a situation that seems hopeless or not where you want to be can turn out to be the best thing for you in the long run because it forces you to reevaluate your life and who you truly are. We do not give ourselves enough credit for who we are and the depths that we are able to reach in order to cling onto life. My life was turned upside down and round and round by my diagnoses (hmm, odd I can actually say that now) and I had to reevaluate what it is I want from life and what I call precious to me. I had hoped for the usual life - married, save together for a house, buy a house, have a sprog or two and a house of pets but with some of this looking unsure it has made me think of why I wanted these things and what good could come out of not having them, if anything. I have not been quiet about my longing to have some kind of pet that I have had for many years. I have mentioned it several times to many people to the point of getting annoying (possibly?!) and when I mention it to my husband now I get a 'sigh, not yet!'. It may be a good idea right now not to have one due to the excessive infection risk and quite honestly, I'd rather stay out of hospital if I can avoid it wouldn't you? but add that to the list of things that 'might never come' and I could have a list long enough to warrant a depression. My hair is beginning the stages of shedding again, I can sense it. No superpowers needed - my head is very itchy and, surprisingly today, there are nose hairs when I blow my nose. I am somewhat sad to see this as I had grown attached to hearing my hair brushing on the sofa when I sat down and looking more like myself again in the mirror. Occasionally when I get out of the shower I sit in front of the mirror and study who I am right now as though getting to know myself again. Going back to what I said earlier, it is in the small things that change happens most. Adjustment periods can be necessary but by taking the time each day to just look at myself and see who I am that day it makes it less daunting. Celebrate the minor successes because they pave the way to the giant leaps and when the giant leaps come forward the times you spent wanting to get out of bed but not being able to and hating yourself for it will become a distant memory. I have spent far longer this chemotherapy round horizontal or sitting down and I have not taken easily to it. I have been frustrated with myself for not being able to stand up and do simple tasks like going to shower as fatigue hit me hard. I have had to take on board advice and remind myself constantly that it is fine that I'm not buzzing around the flat like a blue arse fly because soon I will be, but right now I just can't. I will do what I can but if I can't I should release the pressure just a touch and then I can breathe easier. It doesn't come naturally to me to just sit around and watch other people do things for me; at work and at home I am very hesitant to let others take tasks for me as I can be too proud. Cancer can sometimes say 'F you' to your pride and dignity and sometimes it can say menacingly 'Oh hello, my friend, lets see how we can have some fun'. Many illnesses say the same in fact: Physical and mental. Though it's a mighty challenge, to face it head on is doable and has been proven before. The same strength that takes weightlifters up a 100lbs is the same strength it takes to lift your head off the pillow in the morning. Take a listen to one of my favourite songs by Regina Spektor.
"It started out as a feeling
Which then grew into a hope Which then turned into a quiet thought Which then turned into a quiet word And then that word grew louder and louder 'Til it was a battle cry" I'm sorry if this post felt preachy, I wasn't intending that. Today I seem to be writing for my own benefit as it's helping me clear my head of both chemo-induced fog and various troubles. Today my aunty and her husband and lovely little boy brought us a wonderful Victoria sponge cream cake and guess what? I get to have the rest myself as apparently the husband doesn't like cream cakes. Who on Earth am I married to?! Today is a good day, despite my darned neutrophils potentially running away... Hello my readers,
Today I received a massive shock to my system. Waiting in the outpatients department of UHCW, I was feeling sick with anxiety as the room began to feel overloaded with others waiting for appointments, milling around, drinking coffee and the temperature boiling hot as though I was in a sauna. I could feel the heat rising from my feet to the top of my head. What bright spark had the idea to make the roof of the outpatients waiting area glass, effectively turning it into a greenhouse? I was getting dizzy with anticipation as my appointment waiting time dragged on... minutes were going slowly... 30... 35...40...45 minutes past my time. For every minute that went by my heart raced faster, and if you remember, my heart already gets up to speeds of 132 bpm! It had been a shaky start to the day. The bus had been crowded, the stops too often and the road works everywhere. I managed to put the wrong time of my clinic appointment into my phone (I didn't even mix it up with the line care I had afterwards, I just made up the clinic time apparently!) so at 9.30am the receptionist was a little confused to see me. I went upstairs after confirming my actual appointment time and the day unit staff were equally confused to see me, I wasn't due until after my clinic time. Luckily they told me to find a chair and sit in it and they would see me before. We waited for nearly an hour and no one came to do my line care, so I went back down to clinic where mum and I sat for the torturous wait. The people in the waiting area must've thought we were a little odd after we came out of my appointment a bit dazed and out of sorts. I headed straight for Costa after asking mum for a hot chocolate. In my dazed state I asked for a large hot chocolate, forgetting mum was paying (Oops). Flaw of the Costa in outpatients? NO CREAM OR MARSHMALLOWS IN THEIR HOT CHOCOLATE. Can you believe that? Dr JP was so lovely this morning. I could tell he was genuinely saddened to have to tell me the news I was dreading. He wanted to be sure that I understood what he was saying; that I took the positive for what it was - positive. The positive is that the Non-Hodgkin's lymphoma that creeped into my body looks like it has gone from the PET scan. My body just decided it would exchange one for another so now the description of my blog is wrong! My biopsy results have come back as Hodgkin's lymphoma. I'm sorry...... uh.........what the flip? Body, why you want to complicate everything? Dr JP reckons I may have even had both of them at the same time and if they had taken a bigger area of my original mass they may have found both types there. As there are similar drugs in the treatment for both the Hodgkin's may have dampened down. He was very keen to emphasise how good it was that the original cancer type did not seem to be there. So, up and down the lift *ahem* stairs I went as though the Benny Hill theme tune were playing in the background to the day unit and back down to outpatients. Maria, the lovely lymphoma nurse, went through my treatment plan with me and explained it so well it turned out to be less scary than I originally thought. My treatment is going to be called 'ESHAP' which stands for
The stem cell process seems really interesting actually. From what I understand, they hook me up to a machine that acts almost like a sieve. It takes my blood, harvests the stem cells and then replaces my blood back into me. I'm not entirely certain how this works. Maybe if someone could explain it to me how it exactly works that would be good. However, doing this should act as an insurance policy and get rid of any lymphoma. I'll hopefully be starting this all next week, which is impressively fast so thank God for an efficient oncology/haematology team. Lawdy, it has been a long day. On the plus side no Non-Hodgkin's lymphoma, I have Percy Pigs now M&S have set up shop in UHCW and I have a lot of love and prayers around me. I shall write again soon! |
AuthorHi! My name is Emma-Louise and this is really a personal blog to help me deal with being diagnosed with cancer and to share the experience with others if they need to hear. It's also for sharing the highs and lows of every day life. Archives
December 2017
Categories |