This blog update is going to be a little different.
It’s split into 2 parts:
- Part 1 is an update from me as to what has been happening as it’s been a couple of months and 4 chemo sessions since my last update.
- Part 2, to put a bit of a different spin on things, is going is a ‘guest blog’ from Holly – I’m sure she’ll provide an interesting perspective on what its like to join someone on the rollercoaster that is cancer.
As mentioned in the previous entry I had a PICC line fitted before my 7th chemo session; it’s still very comfortable 8 weeks later, the vein pain and the weird hard veins have gone. The only maintenance required is a trip to the hospital to get the tubes flushed out and dressing changed in the week between chemo sessions.
My special guest for chemo sessions 8 and 9 was my Auntie Carolyn; its was great fun to catch up and she brought me some amazing brownies J. After session 9 Carolyn completed the Cambridge half marathon I wrote about in my last blog in an incredible 2 hours 15 minutes, raising loads of money for Cancer Research (http://www.justgiving.com/Carolyn-Linsell2)! I was lucky enough to be able to surprise her at the finish line.
I think I mentioned before that I started my chemo the same day as another chap, Fabrice, he finished his chemo after the 8th session. He’s very kindly been along to see me at each of my sessions since he finished, its been great to see how well he looks and how much energy he has since stopping the treatment! We had a chemo-club photo with some of the amazing nurses to celebrate his last session…
I had a bit of scare after session 8 when I picked up a bit of a cold and I had a few night sweats (you may recall this was a symptom of the Hodgkin’s in the beginning), I had some blood tests and my C-Reactive Proteins were high (another potential sign of Hodgkin’s); obviously this was a little concerning. Fortunately, these things are not just symptoms of Hodgkin’s, they can just a bi-product of getting an infection, which I’m prone to pick up due to my weak immune system. A short course of antibiotics sorted me out pretty quickly. I think I’ve just got to get used to being a massive hypochondriac for a while!
The weight gain is getting a bit silly. 1 stone 8lbs (10kgs) put on since my first chemo. My haematologist continues to be happy with this; apparently I wouldn’t be putting on weight if I was still fighting off the cancer. The steroids I’m taking to stop nausea in the days after a poison session are the main contributor to the weight gain. They do this in 2 ways; firstly, by depositing fat in odd places (jowls/double chin and cheeks) – this has caused me to develop a rather unsightly ‘moonface’. Secondly they give me a big appetite. I tried not taking the steroids after a session to try and stem the excessive weight gain. Big mistake. It just made me feel sick… the eating continues.
Together with the moonface, my eyebrows are on their way out and I have a total of 3 eyelashes on my lower eyelids. I’m looking weird at the moment. If anyone has any tips for using an eyebrow pencil (for special occasions) without looking like a drag queen that would be great.
I had been anticipating feeling worse as the treatment accumulated, but I actually feel like I’ve been feeling better and it’s been getting easier as time has gone on. Probably a result of less surprises with the after-effects of treatment and just generally learning to ‘listen to my body’. I even managed to go out on my bike for an hour and a half in between my 10th and 11th chemo sessions, which was great. I’ve been lucky so far, my haematologist says I’ve tolerated the treatment very well.
Last week, for my penultimate chemo session (number 11), I had another new special guest, Holly’s stepdad Michael, himself cured from 2 unrelated cancers in the last 18 months… I think his chemo-buddy experience was made slightly more bearable by the lady bringing round the coffee 😉 For anyone who is interested in classic supercars, he’s just written a book (all profits going to The Little Haven’s Hospice, Southend) about the supercars he owned between 1965 and 1985 www.letthemstare.co.uk.
Hopefully I just have 1 more chemo session to go, on April 7th (2 days before my birthday). I’m assuming I’ll have another CT scan soon after to check whether its all been cleared up. I’ll keep you posted.
Now for Part 2… Enjoy!
It’s definitely my fault there has been such a big gap between blogs. Tom asked me to do this straight after he posted his last one (2 months ago?), and since then I have been putting it off as it seems like such an overwhelming task. Ideas have been floating round in my head for weeks but I just didn’t know where to start. However, when Tom said that he was losing sleep over it, paired with the sudden availability of time from the Easter holidays, I decided it was probably time to start. Flashback to October 2015…
Cancer. Cancer. Cancer. I found myself saying this word in my head repeatedly as I tried to come to terms with it. Even though the consultant who gave us the official diagnosis had done a brilliant job of preparing us for the news, there’s still nothing that can prepare you for it. We were just a normal couple, who had recently moved in together. Less than a year later, we were sitting in a consultation room, discussing how much sperm we wanted to store.
This brings my first positive about the whole thing. I feel like we have laughed more than ever these past few months. We were told on the Thursday evening, and on Friday morning we set off to the ‘Andrology Clinic’ (male fertility) and, whilst it was a serious and important thing as chemotherapy can make you infertile, it wasn’t difficult to see the funny side as he trotted down the stairs to ‘Room Number 3’. Then comes the chemo-farts. They are a thing. Google it. I can count the amounts of times that Tom had passed wind in front of me on one hand before this began. Since treatment started I would struggle to count the daily farts on two hands and both feet. He’s promised me this will stop after treatment. Finally, as mentioned in Part 1, the eyebrows, or lack-thereof. I was allowed to be let loose on him with my eyebrow pencil the other night. Brilliant. I am hoping he lets me add a photo of this.
Although it is sometimes hard to see the brighter side of things, I think we have both found it really important to laugh at it whenever possible.
The other emotions have been probably quite normal. At first, apart from being scared and upset, there was anger. I was SO cross with his GP that I regularly fantasised about running round there to ‘give him a piece of my mind’ (I was told off for including my actual fantasy here because Thomas was worried I would come across as violent). How can a doctor who has a young man coming to him with persistent back pain, lumps in his neck and awful night sweats not be bothered about finding a cause?! Particularly when blood tests then come back as ‘extremely abnormal’. And the locum… don’t even get me started on her. Tom was so angry/deflated after returning from his appointment being told ‘everyone who works in an office has back pain’ and his lumps were due to ‘a change in the weather’ that he then didn’t go back, whilst the cancer continued to spread through his body. This leads to my second appreciation of the post (after his original consultant). His physiotherapist, who eventually made things begin to happen.
Then there came the guilt. How could I have lived with someone who had symptoms of cancer for 6 months and not done more about it? In fact, me and my mum (ever the pessimists) had actually diagnosed lymphoma back in July, 3 months before the official diagnosis. Why did I not do more? It was actually because, unfortunately, I had trust in his GP. Never again! I repeatedly said that something wasn’t right, even down to the fact that he smelt different. It sounds really weird but as soon as treatment started he immediately smelt normal again. If I was to re-do the time, I would have gone with him to those initial appointments back in April/May and demanded more. But, nothing can be done now and as we are approaching the end of the treatment I have not had any trouble putting 100% faith in his haematologist – we couldn’t have asked for better.
The worst bit of the whole experience was watching Thomas having to tell people. One moment that I will always remember will be when I watched him telling him a good friend in the pub very soon after diagnosis. I remember sitting in utter disbelief at what was happening. He told us that we were being so strong, but it was like we were in a little dreamy bubble where none of it was true. It took a while, but things gradually became more ‘normal’, to the point where now I can’t really remember what things were like before. Although, leaving a healthy Thomas every other Thursday morning and returning to find one who, quite frankly, resembles a zombie, is something that I haven’t quite got used to and comes a close second to the worst part. But, it’s part of him getting better and there’s nothing you can do other than get on with it.
It’s going to sound awfully cliché, but it’s so true that the best thing has been the confirmation about what amazing friends and families we both have. Starting with his friends, who have been right behind him the whole way. Whilst Thomas has been amazingly positive throughout, there has nevertheless been days where he has been feeling tired and unwell. However, on several occasions, his friends have come round (often travelling quite a distance) and it has immediately had more effect than any medicine could ever have. They have helped him to keep hold of some sense of normality, in a way that myself or our families could never do.
There is nothing better to distract you from stresses than a class full of small humans who are completely reliant upon you. However, this would have not gone as smoothly without the help and support of my friend and teaching assistant Pauline, who I have actually realised that I spend more time with than anyone – she has held up the fort when I’ve needed a moment and been a shoulder to cry on back in the beginning. It was so amazing the amount of people getting in touch after the diagnosis, letting us know they were there if we needed anything. This then led to quite a strange, short-lived period when people, understandably, moved on with their lives and it was difficult to know whether people wanted to talk about it anymore. In a way, I think this helped things to go back to normality. Old friends and new have really made such a huge difference and it’s at times like these when you need them.
Both of our families have been absolutely incredible and I cannot even begin to put into words how grateful we are for them, so I am not even going to try. In just 18 months 2 of the most special men in my life have had 3 types of cancer (see Part 1). Luckily their positivity has turned this into another amusing point and they’ve formed themselves a little ‘cancer club’.
A final positive note is that, on Saturday I got the best bike in the world. Seriously, she’s beautiful.
Unfortunately, it means that there is now no turning back from the 60-mile London to Cambridge. I have never done anything more than the dreaded 5k ‘fun’ run at school and so this should be interesting. I am looking forward to raising money for 3 very important charities. Funnily enough the hardest thing I find about chemo-days is seeing the OTHER people receiving treatment. The old people on their own. The woman having her first treatment for breast cancer days before Christmas. So raising money for another cancer charity, Breast Cancer Now, who organise the race, seems to make sense. Then of course, The Lymphoma Association (no explanation needed) and finally The Willow Foundation. On Wednesday, it is Thomas’s(/our) ‘Special Day’, organised by Willow. I am sure this will be written about very soon. It is going to be fulfilling a dream I have had for a very long time. So, we want to return the favour to them by raising money to allow another poorly young adult go and have their own special day.
OK, I’m done. Thanks for reading my ramblings 🙂