My last post ‘I can’t keep up! Overwhelmed by messages, heres my plea‘ was all about being overwhelmed by messages after recent Newspaper Articles. Many of the messages were understandably asking repeatedly similar questions. I promised an FAQ post so here it is!
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The most frequent of FAQs
How are you?
I have good days and bad days. On the good days I’m bouncing around the hospital, doing stuff on the computer, feeling strong and positive. On bad days its a real effort to drag my arm out from under the bed cover just to get my blood pressure taken. Going out of the ward to go to the toilet feels like climbing Mount Everest. If you picture me hanging off my IV Stand shuffling along with a grimace on my face you’re not far off.
How can I help?
Gosh thats such a hard question! But over the months I’ve come up with a small list. It might not be the help that you envisioned but hopefully there is genuinely something you can do from this list:
- Help Steve. When you help him you help me. He is managing as a single dad while working a full time job, keeping the household going, doing all our family admin and looking after me/visiting me to boot. You can help him by taking the kids out or just joining in so its easier to look after them. You can bring him meals that are easily frozen. You can take him for a pint round the corner while someone else babysits in the evening. You can come babysit so that he can crack on with jobs he’s been trying to do for weeks. You can keep him sane by speaking to him as an adult and not a child under 2!
- Become a patron on Patreon. Yep this one is money based. I set up a Patreon page where I exchange rewards for a subscription. The subscriptions, called tiers, start from $1 a month. Patreon takes a small cut but the vast majority goes to me. In return for your subscription I entertain you with frequent updates about my life but also you get to indulge in the artsy side of me – I share my sketches, finished work, printables, musings and whatever else I’ve got going in my head. I aim to give excellent value for money, whatever tier you pledge at. So theres an element of ‘charity’ depending on your reasons for joining but I get to indulge in my passion, share with my patrons and earn money whilst doing it.
- Sign up to be a stem cell donor. If you’re 16-30, in good health and over 50kg (7 stone 12) you register with Antony Nolan. If you’re over 30, you can register with DKMS. The age split is due to Antony Nolan concentrating their resources on those who are more likely to end up donating. If you donate blood you are not automatically added to the stem cell donor register. You might be able to join if you specifically request it when you next donate but there are stricter eligibility requirements and you have to provide another blood sample for them to send off. Once you’ve been processed by any register you don’t need to register with another, and you are on that register til you are 60. Please remember to update your details whenever you move or change phone/email address!
- Donate to a charity that is dear to us. Mummys Star. RAF Benevolent Fund. Antony Nolan. DKMS. Or find another charity that does good in the world and just think of us as you donate!
Questions about my Hospital Stay
When are you going home?
I’m never sure and sometimes I try not to get too hopeful to avoid the disappointment! There are many factors including:
- Whether the various different doctors are available to see me to ‘sign me off’ for their specialism
- Whether pharmacy is available and whether the drugs I require are in stock
- Whether any machinery or equipment I’ll need at home is available and if I’ve been trained/if there is as suitable instructor to train me
- I need to be free from infection markers – no high temperatures and various counts measured from my blood need to be healthy
- I need to feel well ‘in myself’
- My home environment needs to be safe – no children with chicken pox!
Can I visit?
Yes of course, I love a visit! Message me for my hospital ‘address’ and so I can deconflict visitors if necessary. Visiting hours are 2-8pm but very flexible so if you’re nowhere near those hours just let me know and I can talk to the nurse in charge.
Do NOT visit if you are sick, have been ill recently or have been exposed to anyone who is sick recently.
Be prepared to experience the business that is ward life – nurses will come in to administer drugs and change dressings, doctors will pop in to discuss my condition, healthcare assisstants will come to take my observations, cleaning staff will mop around you and catering staff will drop in to deliver food and drinks or to take orders. They all take priority over a visitor and you’ll have to be comfortable with that!
Do you need anything?
No, I’m absolutely fine thank you. I packed using my packing guide ‘Hospital Packing – what to take for Emergency, Admission and Chemo‘! Flowers aren’t allowed as patients might have allergies/they can’t be cleaned and I have plenty to keep me occupied thanks to the miracle that is the Internet!
Questions about the article
Did you know it was happening?
Yes, a journalist contacted me and we did a telephone interview. She wrote an article and read it to me over the phone and I gave it the ‘ok’. I didn’t hear or approve the titles, so the ‘attention grabbing’ headlines were a bit of a shock. They are obviously trying to sensationalise the story to attract readers but I was pretty upset by the implication that I was deliberately not bonding with my kids – thats not true at all obviously!
Do you get paid?
Not for online articles but if it appears in print then yes. Not enough to house shop, but enough for Steve and I to have a nice meal. One day!
Questions about treatments
What treatments have you been having?
I had my last Brentuximab Immunotherapy/Chemotherapy about 5 weeks ago. We had planned for 4 treatments but stopped at 3 as the doc believes its not working (and I agree with him). I had radiotherapy to the surface of my face. I had a biopsy of my tonsils to work out what was going wrong with my throat. I had radiotherapy to the inside of my throat (because Lymphoma was found there). I had radiotherapy to the inside of my thigh because the lymph node there grew extremely large very quickly. I’ve also had a nasogastric (NG) tube fitted to help me eat/drink as its currently too sore to swallow food and water while my throat heals.
What happens at radiotherapy?
It depends on the place. No radiotherapy hurts during treatment and you can’t even tell it’s happening. I can tell you about my three types:
- Surface. The areas not getting treated are protected by lead masks (and in my case lead contact lenses to protect my eyes). To have face masks fitted I had a plaster cast made of my face! Theres a big machine with a funnel which is directed at the treatment area. There is lots of fiddling about with positioning and you must keep very still.Everyone except you leaves the room and the treatment only takes a few minutes.
- Inside my throat. I was fitted with a plastic mesh mask – it started out as a flat sheet, was warmed, and was stretched over my face to fit. It was left on my face for 6 minutes and hardened. During treatment I was clamped to the table via this mask. The radiographers check all the positioning is correct and again everyone leaves the room. Treatment only takes a few minutes apart from every few days where they do extra scans to check they are still treating the right areas.
- Inside my thigh. This one was the easiest. I hopped up on the bed, got positioned and everyone left the room for a few minutes while the medicine did its magic. Again there were days where it took a little longer while extra scans were carried out.
What are your next treatments?
I’m hoping start my next chemotherapy Gemcitibine this week. Its unclear how many cycles I’ll do, but we’re planning to repeat scans after three. Each cycle is four weeks long. For the first three weeks I’ll go to get the drug injected which takes about half an hour. The fourth week is a rest week to let the body recover a bit. Once the lymph nodes are under control I’ll start prep for stem cell transplant which involves having Total skin electronic beam therapy (TSEBT). After that it’s the transplant itself which is called an Allogeneic Stem Cell Transplant. So as you can see it’ll be a long journey until I’m ‘fixed’ but I hope to spend the coming winter building my body back and getting stronger.
Do you have a match?
Yes. I have a 100% match for my stem cell transplant. In fact, the doctor said its likely that I have several – it pays to be of such common blood!!!
Questions about life in general
Whats your next youTube video/When are you next livestreaming?
I’m not sure yet, at the moment my throat is too sore to speak for long periods without my voice cracking or becoming very sore. I’ve been concentrating on re-jigging my website and writing a few blog posts (as you can see)! I’ve also been doing lots of research into Patreon rewards so that I can be more efficient when it comes to sending out physical packages.
How is the family?
They are getting on ok. Its hard in the morning and at evening routine time when both children need attention simultaneously. I constantly wish I’m at home to help. However the rest of the day Steve is wonderful dad and keeps them well entertained. Kate is an absolute star and we would be ruined without her. I miss the kids so much that I can’t even type too much about it because I’m tearing up. So I’ll leave it at that.
Kim Debling is a Hampshire, UK based designer and Director of her own company Kestrel Design Ltd. She is mum to Rose and Harvey and wife to her best friend Steve. She’s fighting off Stage 4 Lymphoma and sharing her story along the way, mainly via YouTube. Kim is passionate about being happy, mental wellbeing and in particular art and creative pursuits as therapy during tough times. She teaches online at Udemy, has published books and has art and printables available for sale.