I now had the plan of treatment and all I was waiting for was to get it underway. I had a meeting with the nurse specialist in Ward 19 to go through the logistics of treatment. This included side effects, treatment patterns, dates and appointments, blood tests and other considerations I needed to be aware of. Going through the list of side effects was overwhelming – fatigue, sickness, mouth sores, shortness of breath, skin sensitivity/pain, constipation/diarrhoea, infertility, hair loss… Not everyone gets every side effect, and some people don’t experience any… I was just hoping I’d be one of the lucky ones. I had spoken to a few people about chemo and it’s interesting to hear what other people had experienced.
A message that was forwarded onto me from one of my good friends had advice and info on where to look for wigs, but also mentioned something about nails. I hadn’t heard anything about side effects to nails so I googled it (THIS IS NEVER A GOOD IDEA.) I typed ‘chemotherapy and nails’ into the search bar and a whole list of links appeared. I clicked on a forum and started reading. In hindsight, I should have realised I had landed on a forum specific to people having issues with their nails whilst going through chemo which meant everyone in that forum had a horror story to tell, but I got lost in what I was reading and started to freak out. Every post was about people losing their nails! All of them! I was imagining stumps for fingers with sore, pink skin, unable to touch things or do anything, and toes too painful to wear socks, slippers or shoes (one post said they lived in flip flops even though it was snowing outside!!) I sat on my bed horrified. I ended up texting a friend who specialises in Chemotherapy, asking if this is normal and if it is a common side effect. The reply made me feel so much better – she had only known a couple of people lose a nail and she’d helped hundreds! Thank God. I don’t know why I was so bothered by the thought of this, maybe because it hadn’t been included in any of the extensive research I’d done, or maybe it’s just because I knew I was already going to lose my hair and I didn’t want to lose anything else. Andrew came back from work that day and I had a bit of a meltdown – we put it down to the unknown, as well as the lack of control I have regarding how my body is going to react to these toxic chemicals.
Another thing I was worried about was feeling poorly and looking after Ivy. We have been inundated with support and help from family and friends (thank you all so much), but I still want to be able to look after Ivy and do nice ‘Mum and Baby’ things with her. Ivy is such a happy baby and has started to really interact with us – she smiles, coos and watches everything. I really want her to carry on developing so am trying to stimulate her as much as possible. Some of my friends have babies and young children so I’m going to start getting organised and make sure I spend more time with them – to be honest I haven’t had much time to arrange these lovely playdates but it’s on my list of things to do!!
I know I’m probably one of those annoying Mum’s who thinks her child is a genius, but come on, she almost rolled over 🙂
Sitting with Julie, the nurse specialist, going through what I could expect from the next 6 months was enlightening but overwhelming (I really need to find another word for overwhelming). I was given booklets, books, blood test forms, a thermometer, contact numbers, counselling advice and an emergency card to notify medical professionals I have blood cancer if I was taken ill and had to be admitted to hospital. There was a lot to read and a lot to go through. The main points of advice were:
- Do not reheat food
- Maintain a pregnancy diet (no soft cheese or smoked salmon!!)
- Drink as much water as possible (at least 3 litres a day)
- Take temp once a day
- Wash or peel all fruit and veg
- Call hospital at any time for questions or concerns
- Avoid anywhere that could increase the risk of me picking up a bug (basically quarantine myself for 6 months)
- Follow a healthy diet
All pretty straightforward.
The biggest consideration which was stressed over and over again, was the risk of infection. My immune system is going to take a battering over the next 6 months and my body will not be able to fight infection as it previously had. I need to make sure everyone around me is aware of the implications of catching a cold or other illnesses – this will be especially hard going into the winter months. It might mean I have to miss out on parties, events or family gatherings, and quarantine myself to limit the risk. Ultimately it’s only for the next 6 months, but it’s still annoying how my normal life is being impacted by this bloody Lymphoma.
Julie was talking about the importance of avoiding picking up infections and casually said ‘obviously you won’t be going anywhere on a plane…’ I sat there and thought, ‘Shit’. One of my best mates (yes that’s you Kiera – you’re going down!!) is getting married next year and her hen do is in February, the weekend before my last treatment. I started to get upset and asked Julie about the implications of going on a plane, explaining about the hen do, and she said that the amount of germs on a plane is ridiculous and the air just gets pushed around the cabin. I was gutted. Another thing I’m going to miss out on. Julie then left the room and my Mum looked at me and said, ‘Catherine, why are you only getting upset when you’re talking about the hen do?’ It was a good question – I’d sat and talked about the horrible side effects, the strict diet, the number of appointments I’d have to attend, and not got upset once. Not going on a hen do = uncontrollable tears! The only way I could explain it was the impact that the Lymphoma was having on my reality. In my head, I’m going to get treated, get the all clear and move on. What I don’t like thinking about is how that is going to stop me living my life in the meantime. I don’t want to miss out on my best mate’s hen do, I don’t want to be unable to go to the cinema because it’s too crowded, I don’t want to be unable to take Ivy to the baby clinic to get weighed because it’s a germ haven, I don’t want to not go to baby classes for fear of catching a bug. It’s just so inconvenient and rubbish that these are now considerations.
So now I am fully up to speed with what I need to do whilst I’m being treated, how to look after myself, what I should and shouldn’t be doing, what I can expect from my chemo sessions and emergency contact numbers, just in case.
I got home and talked it through with Andrew, telling him that everything is in the red folder should he need anything. We also talked about me starting this blog. I’d been thinking about it for a while, and ummed and ahhed over the pro’s and con’s.
- Enables me to document thoughts, feelings, updates – kind of like a diary
- Updates family and friends on what’s going on – it’s hard to do this on a 1 on 1 basis. There are too many of you!!
- Could potentially help or share experiences with others in a similar situation
- Exposes me. I knew that if i did this blog, I’d have to be honest, which means being completely transparent, however hard that is.
- Upsets people – I know it might be a hard read for some of you
I decided to go for it and wrote a draft post to see how it would read. It came easily and once I started, feelings and emotions came out that I hadn’t realised I’d had. This was possibly easier than I imagined because it’s like I’m telling a story, but a story that’s actually happening. I decided to pay for the domain name (this ensured I owned the blog and the host site could not remove it at any time) and set up my account. I ran the first post past Andrew (who cried), and he said to go for it. I published the first one and put a link on Facebook. I was literally overwhelmed by the response – comments, messages, whatsaps… it was incredible how many people offered me their support and well wishes! I also had messages from people who have gone through treatment themselves, and they were giving me advice and pointers as well as showing their support. It’s at times like this you realise how lucky you are.
I hope you guys are enjoying the blog as much as I enjoy writing it. I’m desperately trying to get up to date with where I am and the next blog should do that!