PICCs, Ports and Problems

Well, once again this post was meant to be about my first cycle with ABVD chemotherapy, but however cancer decided I needed another long weekend away in hospital…great. 

On Saturday morning I had to go into hospital, after I passed out on my parents bathroom floor in the early hours of that morning. I was okay and felt completely normal but my doctor wanted to check me over just to be on the safe side. I had a CT scan and some blood tests taken, my doctor then told me he wanted to keep me in overnight for observation. They were worried I had a blood clot that had formed around my PICC line which had now become dislodged and was floating around my body from the previous day when the doctor pulled 9cm of my line out, as it was touching my heart. They think this is what may have caused me to black out. To say I was annoyed to be back in hospital would be an understatement. I’d managed 5 days before I was back and all I wanted was a normal weekend. 

Sunday came and my doctor told me he wanted to do a scan of my heart, he wanted to make sure that the blood clot hadn’t gone into my heart…bloody fantastic (no pun intended!) The scan really was quite amazing, watching your heart pump away on the screen was so strange but fascinating. The results came back and everything was fine, thank god. I was put on blood thinners just to be on the safe side and had to stay in another night for observation. By this point I didn’t really mind, I was on a ward with three other ladies who have to be some of the nicest people I’ve met. Pauline, Christine and Margaret made it their mission to look after me whilst in hospital when my parents weren’t there and they definitely did and to top it off my parents promised me a MacDonalds for my tea :) 

My doctor came to see me in the morning and told me he wanted to take my PICC line out. My picc has given me nothing but trouble since having it fitted. The line had to be pulled out twice as it was touching my heart, something that shouldn’t happen, resulting in heart palpations for me and it also can be very damaging for my heart too. He explained how he wanted me to have a port fitted instead of the line the following week as this would be safer for me with a smaller risk of infection and blood clots. I got to go home Monday night and to say I was pleased would be an understatement. Spending two weekends in a row in hospital was enough for me. What they don’t tell you when you’re diagnosed with cancer, is everything else that comes with it. The infections, the risks, the hospital stays and in my case the blackouts. The chemo itself hasn’t been too bad to me so far but I have been told it does get worse. 

life/hair Update - 

Apart from hospital, life has been okay. The biggest challenge for me so far has been losing my hair. My hair has been falling out gradually for a couple of weeks but on Monday it was awful. I had a shower and started to brush my hair and it started to come out in clumps. For the majority of Monday and Tuesday I just cried, as if fighting cancer alone wasn’t enough, it also wanted to take away one of the things I treasured the most and probably what any 19 year old girl treasures. But I am determined to be positive, I know that the chemo is working because of the hair loss and I know that after all this, it will grow back. It might take a long time but it will come back. One of the hardest parts so far is looking in the mirror and not recognising yourself anymore, but this has taught me that looks aren’t everything. My personality is still the same and I still have my wicked sense of humour so it’s not all bad… 

Hopefully my next blog post will finally be about my experience with chemotherapy and not another post about hospital! (lots of emphasis on hopefully!!) 

Grace xo 

My Long Weekend Away…in Hospital.

Well…what a weekend!! Instead of spending my weekend in Salcombe like planned, I visited the Worcester Royal Hospital instead. This weeks blog post was meant to be about my first cycle with ABVD chemotherapy, but it seems my body had other ideas. This post will probably be quite a long one but I had a rather busy weekend…

 On Thursday, I started to feel like I had tonsillitis on its way (great.) I made an appointment at my local GP surgery as some antibiotics would soon make me feel better. The doctor took my temperature - 37.4  and she didn’t believe I had an infection, I just had tonsillitis…. Before you start your chemo you are told all about the side effects and what to look out for when you think you have an infection, the biggest thing they tell you to look for is your temperature, anything over 37.5 and you must ring the helpline where they will probably tell you to go to hospital.

By the time I got home, I was feeling awful. I re-took my temperature…it was 38.3. This was not good, it looks like I didn’t just have tonsillitis after all, but an infection too. My mum rang the helpline and was told to wait half an hour, before retaking my temperature to see if it had gone down. We waited half an hour and mum took it again, the thermometer beeped…38.3, bloody brilliant. Mum rang back and told the lady, and I could hear her say “you need to bring her in to a&e ” at that moment I actually wanted to say ‘do you know what I’m feeling so much better..I think the thermometer might just be a bit temperamental’ but before I could I was out of bed, in the car and on my way to hospital. 

A&E..what a horrible place you are. I arrived at the hospital and it was awful. When I first found out I had cancer I got told that if I ever did get an infection, I would get rushed through a&e as any cancer patient becomes a priority due to the risk of picking up any other infections. I was given an antibiotic by the nurse and taken to a bed on the a&e ward with everybody else (something that again, as previously stated is not great for somebody that is struggling to fight infections.) I was waiting to see a doctor who informed me I would be staying over and that they were waiting for a bed to become available in the haematology ward…the one thing I was scared about was staying over and something I wanted to avoid at all costs, looks like that won’t be happening! 

I was finally taken to the haematology ward after spending most of the night awake listening to the soundtrack of a&e (I don’t recommend it.) I was given my own room to which I then discovered was because I was neutropenic, so I essentially was in isolation. Neutropenia is when someone has an abnormally low level of neutrophils. Neutrophils are a common type of white blood cell important for fighting off infections. A healthy person has anywhere between 2,000 - 7,000 neutrophils…I had 0.2. I was then told by the doctor I would be spending the weekend in hospital until my neutrophils were up…just what I wanted to hear. The next few days consisted of antibiotics, injections and hospital food (another thing I don’t recommend.) By Sunday I was ready to come home, I’d had enough and I was feeling so much better, just one more sleep until they would hopefully let me go home. 

Monday came and I knew all I was waiting for was to see my main man, my consultant. He eventually saw me in the afternoon and told me it was good news, I would be going home that day and they didn’t want to push my chemo back either as I was due to have this the following day. This was music to my ears, it sounds funny because anyone would think the doctors pushing my chemo back would be good and I could relax but really, this would mean it would be one step further away from me reaching my remission date, something I definitely did not want to push back! 

So what have I taken away from my long weekend in hospital…well, I’m no longer scared of hospitals or staying over in them..tick that one off the list! I also learnt that hospitals aren’t that bad, they make you better quickly and the NHS staff really are one in a million. Everyone who I met on the haematology ward over the weekend, I owe the biggest thank you to you all, for not only making me better, but for caring for me and for even being there for me when it all got a bit too much. I also owe a big thank you to my parents for never leaving my side, I couldn’t be as positive and strong as I am being if it wasn’t for them, so thank you.

Lots of Love…Grace xo 

The Nitty Gritty of Hodgkin Lymphoma

So for my next blog post, I firstly just want to thank everybody for their support and love, it truly has been overwhelming and very heart-warming for both me and my family and we all do truly appreciate it. I thought I’d give you all a bit more information into Hodgkins Lymphoma as I want to raise this awareness and inform people about it and of the symptoms connected to HL and to also give you a little update as to how I am and what I've been up to!

What is Hodgkin Lymphoma? 

HL is a cancer of the lymphatic system. Around 1,700 people are diagnosed with Hodgkin lymphoma in the UK each year. It can affect people at any age. However, it is more common in people who are 20 to 34 years old or over 70 years old’ - Macmillan 

How Lymphoma is treated - 

The main treatments used for HL is chemotherapy and radiotherapy. Depending on the stage and type of cancer you have, your age and general health, and which body parts are affected depends on the treatment you have, it could be one of these or both. I am having 6 months of chemotherapy as I have stage 2..

Signs and symptoms -

For me, my biggest symptom was finding the lump in my neck (I’ll put a pic below.)  However, on reflection I did have other symptoms as well as this. I had really bad night sweats, but I put this down to the long hot summer we have just had..I also did lose a bit of weight but not to the extent where I was worried. A pain from alcohol, but I didn’t have this and this is quite rare. The one symptom for me which really stands out for me, is tiredness. I was constantly tired. I would have a full 10 hours sleep and still be struggling to keep my eyes open by the evening, and a five hour shift at my local pub would knock me for six…warning signs, I know. The final symptom for me which made me do something about what was going on, was the feeling of breathlessness. The feeling of having someone sat on my chest and having to lie a certain way in bed just so I could breath properly was the final nail in the coffin for me. In hindsight, if I had known about Lymphoma and the symptoms of it, I probably would have caught it a lot sooner then I originally did and I’m hoping that by writing this, someone else could be reading this thinking “well, I’ve got that…and that” and will go to the doctors. I can’t stress enough how important it is to get any lumps and bumps checked, or even if you just feel unwell, listen to your body because I did and look where I am now…lol. However, just to confuse you a bit more, some people have Lymphoma and don’t have any symptoms, but this is found through tests for other conditions. 

Life update - 

Sooo, last Tuesday I had my second session of chemo (10 more to go!!) and the nurse told me how my white blood cells were quite low so I have to have injections so they reproduce as I currently have an extremely low immune system..but other than that, chemo 2 went okay. The only way I can describe my side effects is like one big fat hangover that lasts for about a week, but with added aches, pains, tummy ache, nausea and a really sore mouth. I should start to feel better this week but the aches and pains stick around and so does the extreme tiredness, for example, going out for lunch really does take it out of you and leaves you rendered useless! Apart from that, I have been okay, my hair has started to come out more and to be honest, it's really not great, it has made me realise that I am actually poorly. It's quite annoying really, there is hair on everything and it gets everywhere..sorry mum!! 

I know this post is a lot of information and could seem boring for people to read, but it’s an important topic to me and could hopefully save someone’s life. 

Thank you for reading and lots of love…Grace xo