This post has taken me a long time to write, but after much debating I decided I needed to write it so I can get back to crafty posts-it’s been a stumbling block for me for a while. 2019 was meant to be a very exciting year, and in some ways it has as we finally had our house extension built which meant we didn’t need to move.
It was during the decorating of the extension that things took a downwards turn for me. I was feeling very tired, which I put down to the decorating on top of working and running around after the children. I was itchy and had a cough, which I decided must be because of the all the dust in the house following the knocking down of various walls and replastering. It was in July that I found a lump in my neck. I was told that because I was young, and generally fit and healthy, that it was nothing to worry about. I did go for a massage as my neck hurt (but I had been a little silly at the allotment and moved some things from the old allotment to the new one that were really a little heavy for me to move on my own!)
In August, another lump appeared next to it. I quickly went back to the doctors, and was referred on the 2 week pathway to have it investigated. Obviously this was very worrying, and I wasn’t particularly reassured when they took a needle biopsy from one of the lumps. Again I was told it was probably nothing serious. The results of this test came back as ‘suspicious’ and so I had to have a whole lump removed surgically (ironically this took place on the day of the Macmillan coffee morning, so I packed the children off to school with money for their cakes knowing I was going to hospital to find out if I potentially had cancer myself).
Around 10 weeks after my first doctor’s appointment, and after a lot of stress about what it was or wasn’t going to be, I finally received a diagnosis-I have Hodgkin’s Lymphoma. I had to have numerous other investigations to stage it, including a CT scan, a PET scan and a bone marrow biopsy (I was incredibly relieved that this came back negative as I found that particularly unpleasant). I was also passed from the ENT team to haematology. After combining the results of all of the tests, the consultant said my prognosis was very good and a treatment plan was scheduled-12 fortnightly treatments of chemotherapy.
We told the children that mummy has bad cells and that I need special medicine to blast them, and explained that my hair would most likely come out because the medicine blasts good cells too. My 8 year old wanted to know why they haven’t invented a medicine yet that only kills the bad cells-I told him they are working on it! I drew a picture of good and bad cells to illustrate, which I am not sure are entirely scientifically accurate but they did the job.
On 5th November, I had my hair cut shorter in preparation for my treatment beginning. On 6th November, I went to the hospital chemotherapy suite for the first time. We were late, as there was no parking at the hospital, so my already frayed emotions were even more of a mess. I cried at the chemotherapy nurse as I was worried about being late, but she was very reassuring and said it didn’t matter. Then when I went into the room itself I cried again as it suddenly all hit me, and I wondered how on earth I’d ended up in this situation. An older lady sat in the corner, already hooked up to her drip, gave me a smile and a knowing nod, the nurse gave me a hug and I reluctantly settled into my seat. (Note to self-arrive earlier next time as I got the spot under the TV so I could hear it but not see it!) The treatment itself was ‘ok’, one of the drugs hurt my arm and they had to slow the drip down, but they made a note of it for next time. I even managed some crochet between my cocktail of 4 different drugs.
Then they presented me with the bag of take home medications, all 8 of them. I had to get an app to remind me when to take them all as they are all on different schedules! After treatment, I arrived home to a lovely gift bag left by a friend, containing all sorts of goodies to help me through the chemotherapy. That cheered me up, even though I was tired from the treatment. The children had a sleepover at grandparents as we had no idea how I’d feel afterwards. As it happens, the anti sickness drugs they gave me did a good job and I only felt nauseous. I was basically wiped out for a week after the first treatment (it felt like a mixture of morning sickness and a hangover), and also had a nice trip to A and E as one of the drugs gave me chest pains and I had to go in for investigations.
Around a week after my treatment, my friend and I went wig shopping. Even though we both had a few tears in the shop, we chose a wig, put it in the car and went for lunch! I then had a few days of feeling ‘normal’ (unfortunately I can’t go to work even on those days due to the high risk of infection from working in schools-so I did a few little jobs in the house).
Treatment 2 was slightly less scary, but I was emotional as I knew this was the one that would make my hair begin to fall out (hence the wig shopping the week before). I also found out that my white blood cell count was very low and I’d need to learn to inject myself with a medicine to stimulate my bone marrow to produce more. This was a surprise to me as I’d felt ok for a few days. I’ve got the hang of injecting myself now, but my goodness it hurt after the 3rd injection when my bone marrow went into overdrive-it felt like my bones were turning themselves inside out. A couple of days after the treatment my hair began to thin, as predicted, but I didn’t give in and get Mr C to give me a no. 3 cut until the day before treatment 3 as my hair was still thick enough to pass as ‘normal’.
The first time I went out wearing my wig was to drop the children off at school and then go straight to the hospital for treatment 3. I felt really self conscious on the playground at school, even though I’d chosen a style and colour that I’d have normally. (My lovely hairdresser trimmed the wig for me so that it was more ‘me’.) I’ve got used to it now, but on the windiest or chilliest days when I watch my son play football I just wear a very warm wool hat over what hair I have left as I can’t wear both a hat and wig together.
I’ve now had 4 treatments, all of the lumps I could feel in my neck have disappeared which I hope is a good sign (I also had masses in my chest and abdomen, which were detected on a scan, so I have no idea what’s happened to them), and my nausea is being managed better thanks to a little bit of tweaking of when to take tablets. I’ve had to have a reduced dose of steroids, though, as they gave me insomnia and made my fatigue worse when I stopped them.
I’ve been ‘lucky’ in that I’ve not missed out on too many things with the children, like their nativity plays and so on, as the specialist nurse just said to me to be sensible and move away from people with obvious colds. People have been so kind too, with offers of help with the children etc. It’s made me really appreciate those around me even more!
I have had some time for crafting (on the good weeks) so I finally got around to making the wreath I’d intended on making for years. It looks rather nice on the door from the porch into the house, even if I do say so myself! (Just don’t look too closely, I got a bit carried away with my new glue gun.)
Now that I’ve finally written this, all that remains to say is Merry Christmas. Hopefully I can get back to writing the odd crafty blog post after in the new year (and new decade!)