I'll start with my own story!
Cancerbuddy started from a hope that I could use my own experience to benefit others. What follows is a summarised blog about my experience. For the formal “about us” skip to the end. If you want to find out about me please read on.
My name is Jo (I’m the one with the Santa hat and ridiculous bow tie in the photo) and I was first diagnosed with stage 4 diffuse large B-cell lymphoma in June 2016. I was floored. I had always been a smoker and had lived in fear of hearing those words “you have cancer”. Each time I smoked another cigarette I thought that’s it, that one was the straw that will have broken the camel’s back (no pun intended although I did smoke camel lite!). I felt constant guilt as my two daughters got so upset if they saw me smoking. Anyhow as it happened I didn’t end up with lung cancer (perhaps that would have been on the cards if the lymphoma hadn’t got me first) and I ended up in a whole new world. And I stopped smoking!
This cancer world was full of supportive lovely people, smiles, jokes and nurses chatting as they tried yet again to find my invisible veins for the chemo cannula. It was not the world of doom and gloom and misery I had been expecting. There were of course horrible times. One of the chemo drugs gave me an intense build up of pressure in my sinuses like when you dive into a pool and your nose “goes fizzy”, except it built and built and built and just as I couldn’t take it any more, feeling as if my head would explode, the drip came to an end and the next drug went in without any problems.
As you will probably know most of the problems come after the drugs are administered. The side effects of chemo can be brutal:- the nausea (mostly well managed by drugs now, which was a massive relief for me as a puke-o-phobe), exhaustion, aching bones, lack of sleep, immediate menopause. Nobody told me that when your hair falls out, which is bad enough, especially for a woman where baldness does not seem so accepted by society, it is actually a really uncomfortable sensation. For me it felt as if my hair was parted on the wrong side of my head, a kind of pins and needles type feeling in every follicle, when I put my hand up to “correct” the position of the hair my fingers would end up full of lost locks! I have never been that vain about my hair and was never a person to give detailed instructions to the hairdresser, as long as it was pretty short and a bit cool that was fine for me. Anyway I was traumatised about the hair loss. I ended up getting my 14 year old daughter to shave my head as that was a much better look. I have a good shaped head, there are not many compliments I give myself but that is one of them, and I would have been quite happy to appear in public with a shaved head, but it is the loss of the eyebrows and the eyelashes, which give you the look of an alien that put me off. So I retreated to my home and concentrated on doing whatever I could do to get through this thing.
I was buoyed by the book Anti-Cancer – A New Way of Life by David Servan-Shreiber. Please get it if you are in need of an easy and uplifting book. The guy survived a terminal brain cancer for decades when he was told it would be a matter of months. He talked about exercise and foods and the miraculous benefits of things like ginger, garlic, broccoli, turmeric, oyster mushrooms etc. I spent the 6 months of my treatment cooking food containing these ingredients and I am sure it helped me retain my strength and to deal better with the effects of chemo. I also am fortunate to live near large woodlands and an ancient Heath and I spent a lot of time “forest bathing” as they call it now – basically walking in green spaces enjoying nature. My consultant, whom I love as he is a wonderful reassuring medical genius, was not a big believer in diet playing a part in the healing process but even he confirmed that green exercise should be prescribed by all oncologists as it most definitely helps mentally and physically.
My chemo was not pretty, it involved 8 rounds of intravenous drips, each time with more and more difficulty finding veins plus 2 one week long inpatient stays for super strength methotrexate drips plus 6 intrathecal injections (injections in the spine) to try to keep the fluid in the brain and spinal cord clear.
By December 2016 I had the all-clear and returned to work gradually.
In September 2017 I noticed a numb patch of skin by my left knee. There were no explanations, I just had to watch it. In December 2017, while I was on holiday with my family the numbness spread from my knee all the way to my feet and it felt as if my calf muscles had been massively overworked. It was agony to walk and it felt as if the front of my left leg was engulfed in flames. I kept falling over as my leg would simply give way without any warning, once when I was holding a boiling hot tray of lasagne and once when I was leaving my office building where I fell over on the busy high street carrying a box. This happened in front of some work colleagues, who just didn’t know what to do. I couldn’t get up from the floor without help as my left leg was by now totally useless. I had to call them over and ask them to help me up and pass me my box, whereupon I limped to the car park with my bleeding knee and torn trousers, saving my bawling for when I got there.
I saw all types of doctors after this. The major concern was whether the cancer had returned to my brain and so I was plunged into a deep depression for a few weeks while I underwent nerve tests and different scans, meanwhile reading books about how to tell your children you were going to die soon, I have never been good at the glass half full thing! I had nothing but admiration for others I knew, including my wonderful next door neighbour Gill Smith (her book is also amazing “Because You Can”) , who are so brave about a terminal diagnosis. I was a self-pitying cry-baby. The only thing that helped, and this is pretty gruesome, was looking at everyone on the street thinking we are all going to die at some point. Two things we ALL have in common is that we are each born and we will each have that moment where we leave our bodies and then….[insert your own belief here].
Eventually it was the consultants’ combined opinion that the lymphoma had returned but that it was lodged in the femoral nerve and the tibial nerve in my left leg. This was bad news because it was rare and they didn’t really know survival stats but good news because it wasn’t in my brain, yay!
I was told that I should have not only a different recipe of chemo drugs for Round 2 but also that this should be followed up immediately with a stem cell transplant as this would hopefully reduce the chances of the lymphoma returning for a third time.
Round 2 involved 2 one week long stays in hospital with some pretty horrible drugs plus a different drug injected into the spine on 6 occasions. Luckily this time I was given a picc line so that it was easy for drugs to be administered and blood to be taken. If I could give one piece of advice it would be to make sure you ask for a line of some sort so that you don’t have to suffer the additional stress of finding (or not finding) veins for cannulas. When I was released after treatments this time round I couldn’t behave as I did the first time (cooking and walking) as my left leg was excruciatingly painful and I could only walk with the aid of crutches. Instead I spent most of the time when my kids weren’t around, crying and watching easy TV (for me this means cookery programmes, Rizzoli and Isles and Bones or any true life police programmes).
The pressure was on for the stem cell transplant. Either I had to get the all clear from the new chemo, in which case they could use my own cells for the transplant, or I had to find a donor. They asked me if I had any siblings. I do. I have an estranged brother who will have nothing to do with me for no reason other than that I love my mum! I was dreading having to ask him to donate his cells as firstly I was pretty sure the answer would be no and secondly having done that the chance of him being a total match was only about 25%. God was smiling on me (I’m a believer in God and Angels and all sorts of things that you may not agree with, but I am here and I feel I have them to thank!). I got the all clear and went in for the “harvesting” of the stem cells for 2 days in a row. The machines they use are incredible but also basic looking, like something from the TV shows Dr Who or the original Star Trek. One of the days I was strapped up to a machine called Kylie! They managed to suck up enough cells for a transplant (nearly 4 million) and I had 3 weeks to live my best life before the transplant. I still couldn’t walk, the doctors told me it was unlikely that the nerves in my left leg would repair due to the extensive damage the cancer had done to them. Anyway that was the least of my worries, I needed to stay alive first and foremost.
I was admitted to hospital at the beginning of May 2018 for the stem cell transplant. The routine was 3 days of the most intense chemo my body could take (BCNU), I can only describe this as being reduced to nothing. Also, oh happy days, one of the drugs gave me the same sinus reaction as the one from my first time round except a million times worse. My choice was to get them to slow the drip so the reaction was not as severe but was with me for much longer, we’re talking hours, or pressing ahead and hoping my sinuses wouldn’t explode (or so it felt). I chose the latter with the help of my lovely 18 year old daughter sitting behind me stroking my back and fanning me and doing anything she could to take my attention away from the hideous sensation building up in my nose. I know you are probably thinking I am making one hell of a fuss about this in the scheme of things but it really hurt! I was pretty sick after this one.
After the 3 days of hideous chemo there were 3 days off where my vital signs were studied all the time resulting in even less sleep than usual. I felt utterly exhausted, unable to converse, just staring at the ceiling, that type of thing. Wednesday 9th May was my DAY ZERO, my “new birthday”. The most experienced nurses brought the cleaned stem cells up to the room in the crazy-looking nuclear medicine barrel removing the lid and taking out each packet of frozen stem cells with dry ice/ liquid nitrogen evaporating around about. They thawed the cells out in a water bath and then started the drip, making sure all the cells go through the tube and into my body. I actually felt ok for most of the day having to suck lollipops so I didn’t get put off by the weird taste in my mouth. I didn’t really taste it, I guess that was the point. I had been warned that when a patient receives the stem cells there is often a strong smell of cooked sweetcorn, which permeates from the patient’s pores and breath. This was worrying me as I am not a fan of that smell, it is strange how one fixates on something so ridiculous in the face of something so massive. As it happened I was told the smell was very mild and I couldn’t smell it so that was ok!
The lost fortnight followed. I won’t go into details but it involved a lot of D and V and hallucinating. I heard the same Elvis Presley song coming from a neighbouring room for 2 weeks (needless to say there was no patient playing the same Elvis song for 2 weeks). I looked in one direction and all was fine, I looked in another direction and I saw “The Upside Down” world from the TV series Stranger Things. I puked for 2 weeks. My stomach swelled up so it was the size of a football. When anyone asks me what it was like to have a stem cell transplant I cannot bring myself to lie to them. I think the most comfort I can give them is that it is like going to hell for 2 weeks but hey it is only 2 weeks and without it I might have gone for a lot longer!!!!
That is pretty much it for my cancer experience. I am in remission. It took 6 months to repair enough to return to work and even then I had to return part time. I still get tired and my brain fog is still there although reducing slowly bit by bit. I was put in touch with a wonderful physiotherapist called Isaac provided to Macmillan Cancer Trust by Tottenham Hotspurs Football Club. He has helped me walk again even though my main nerves in my left leg remain dead and numb. You wouldn’t even notice there was anything wrong with me unless I forget and attempt to run for a bus or run down the stairs (those days may be over but that is a small price to pay). I am eternally grateful to all the doctors, nurses, Isaac, the supreme but crumbling NHS and my superb haematology consultant Prof Christopher McNamara for the treatments, the help, support, warm words, smiles, hugs etc. I obviously wouldn’t be here to tell the tale if it were not for them. In the UK these people are not paid enough money for the exceptional treatment they offer, the hours they work and the lives they save.
I was fortunate enough to be put in touch with other people going through cancer in a group called “Moving On”. It was amazing. I was shocked how at 49 years old I was one of the older ones in the group. Most of the Moving On class 2018 had been through or were going through breast cancer treatment. I didn’t really have anyone to talk to who had been through the same experiences as me. In any case it was wonderful to get general cancer (and other) tips from these amazing people and we have stayed in touch through our Moving On WhatsApp group. I was also lucky to have a friend, Julia, who had been through chemo the year before I was first diagnosed and who looked happier and healthier afterwards than she did before the cancer. These buddies were crucial for me.
The help I received from all the fabulous people I came into contact with really inspired me to start this website. I strongly believe that having a buddy or buddies to talk to when you are facing such a dramatic time in your life is so helpful. Of course it is no replacement for medical advice, which you MUST GET and psychiatric/counselling sessions if you are struggling, but it helps normalise what seems like a completely alienating situation. This goes for my poor long suffering family and friends, my teenage daughters, who were deeply affected and my husband who had to carry on throughout being strong, supporting the family, holding down a very full time job and helping me get through to the other side.
My aim is to set up this social networking site where instead of finding your next date you find other people who are in the same position as you. Husbands might find other husbands who can sympathise or offer words of wisdom. Parents might find other parents going through the same thing. People with unusual types of cancer might find others with the same type of cancer to chat with privately through messaging system. I really hope it works out and that you as a user will find it helpful.
Please contact me at firstname.lastname@example.org if you have any comments or would like me to post your success stories or have recipes you found helped you. I will do my best to add them to the site. Please also contact me if there is something on the site you would like to report or have taken down.
I wish you all the very best on your cancer journeys and hope that you find buddies galore through this site to enable you to have comfort and support on your way.