My 18+ Years Cancer Journey
I had 6 cycles of Chemotherapy (R-EPOCH) totalling 750+ hrs, 45 Radiotherapy Sessions, 2 Allo SCTs, Total Body Irradiation and ATG (anti-thymocyte globulin) and lots a various Chemo conditioning - Issues were inevitable. My main SCT Consultant likened the physical process of Allo SCT treatment as going through a boxing match and running a marathon every day I was in hospital and I had not done any training for it and I did it twice.
Fatigue was a long lasting problem. 2 years post my second Allo SCT I was still having Fatigue issues 'my clock would run down'. During my main Chemo I did actually do ok but the Fatigue did start to build up over the cycles, I would sleep a lot but at the same time I had been advised to try and keep active. So during my my inpatient times I would take my two chemo pumps (Laurel and Hardy) for a walk round the ward corridors after all my meals. I worked out I was doing about 2 miles a day. During the time between each cycle I did my best to keep the walking going but gradually I did find this got harder as time went on.
Peripheral Neuropathy is another long lasting problem. It is amazing how long this has been an issue. It started back in early 2014 and only now in late 2017 am I starting to get the feeling back in my hands. As a Guitarist this is so frustrating but it is a good excuse to keep away from sharp knifes so not much cooking being done :)
Muscle wastage was also a big issue for me. I had so much time in bed being inactive that my leg muscles just wasted away. When I left hospital after my second Allo SCT I had to walk with a walking stick, I could not drive as I did not have the power to push the break so it took three months to get back driving. We have no stairs in our house so the first time we visited one of our daughters I stood at the bottom of her stairs and could only see Mount Everest. My 2 year old granddaughter was up to the top before I got on my hands and knees and crawled up step by step. Even now I have to come down stairs sideways.
Infection is the big 'Bad Boy' especially after Chemo and an SCTs. Your immune system will be significantly compromised to the point of not having a immune system just before getting my Stem Cells. For a long time I was just not able to fight simple little infections like colds. We have 4 granddaughters and during my SCTs 3 were under 3 but on this occasion they fortunately stayed in Edinburgh and Birmingham (we are in Inverness) so I had space and time to get my counts and immune system up a touch. I didn't get to see any of them for 2 months and one of them was a newborn. For the first year post SCT (2 times) I never had a good cuddle, but that was more to do with my wife and daughters keeping them away from me :(
I am part of the leadership of a large Church in Inverness and I was strictly told I MUST NOT attend Church for a year (2 times!!) as we have lots of children. I had to keep away from supermarkets, pubs, cinema, restaurants etc, as these are all infection machines. The isolation was hard and even our friends tended to stay away as they all thought they would carry in some type of infection. But all in all it is do-able. Wash hands, clean work tops, door and WC handles, look out for colds. If you have children, check with schools as stuff like measles for a SCT patient is very dangerous.
A healthy and clean diet is very important as you don't want food poisoning. You will basically be on the same diet as an expectant mum. No unpasteurised food like soft cheese (this was so sad), no fruit with skins like grapes, strawberries. Wash all vegetables very well, don't get 'take away food' and if you do, make sure it is hot and sorry no boiled eggs :)
Survival is a journey and a half. After 12 months post my 2nd Allo SCT I had completed most of my re-inoculations as a SCT wipes out most of your childhood inoculations. I was actually getting the same jabs as one of my granddaughters :) I will say it again, keep active, as much as your fatigue allows as some exercise will help overcome fatigue, sounds counter intuitive, but does help. I had a lot of muscle and nerve damage due to the growth in my neck so I have been attending a circuits class run by a Cancer trained fitness instructor and this has helped a great deal.
Eat well, I had lost my appetite so I lived for 3 months on good home made soup, porridge, custard and basically grazing, little and often. You may find that you have lost a lot of weight so a high Protein diet may be required, but watch you don't go over the top with fatty foods. I lost 27kgs so went down two waste sizes!! But I have been able to get back to a good weight.
Support all cancer patients and carers needed a strong support network, our journey was going to be long and hard so this was very important. So we were totally open with our family and friends, bringing everyone with us on our journey - Facebook, Email, FaceTime, WhatsApp groups. We used every resource to keep everyone up to date. When I was having my two SCTs we were 9-10 hours round trip away from home and I was in my isolation ward and my wife was living in one of the little family rooms connected to the ward. We were away from home for a total of 10 weeks. It was hard work for my wife as a lot of the time I was sleeping. But we had friends who did the long round trip just to take my wife out for meals or a spa treatment. We would come home and the grass was cut, we had meals delivered to the house - It was so important.
Post treatment challenges can be a problem. I have meet many people over the years who had different coping strategies. Some will have no strategy and are in a downward spiral all the time. A good number of medics I have meet will say this strategy does not help the healing process.
Some folks go to amazing support groups that Macmillan, Maggie's Centres and others provide. I have completed the Maggie's 'where now' course. It was so helpful in helping me and others unpack the rucksack of stuff that we collect over the cancer journey.
The one significant thing in my rucksack was guilt, guilt in surviving. I walked my cancer journey with a good friend who also was on his cancer journey. He unfortunately did not survive his battle and the guilt overwhelmed me. So the 'where now' course made a lot of difference and helped lighten the load. Dr Peter Harvey has done a great paper - Life after Treatment - Dealing with survivors guilt (link)
Some folks do mindfulness courses and some just get on with it. My wife and I are total glass half full people and we have always looked for the good in every situation we find ourselves in so when we got bad news we would just say "what's next, there is always a what next"
Both my wife and I are Christians. I was a long haired, 15 year old guitar player in the late 60s when I made this life long decision. For us our Faith and very large network of family & friends has brought us through - if you have a Faith - trust in it.
We do believe that prayer works and we can truly affirm this in our own very long journey. We have heard the words 'this is remarkable' from many of our consultants and we live our lives out together as though they will be our last and this is why my tag line says 'trying to live my life and make a difference'
John Romulus is not my real name
I think you are an inspiration to us all .... I admire and appreciate what you are doing, especially your advice to new members.
Your continuing resilience in the face of medical setbacks and complications is also remarkable. I don't drink alcohol at the moment but when I next get my hands on a single malt I will raise my glass in the direction of Inverness.
Thank you J, once I had come through the main part of my journey I was looking of ways to give back. I cant help out in a practical way in clinics and Macmillan centres as my immune system is still in its baby state but the Online Community is ideal and yes in an evening I will have a 12 year old malt at hand :)
All the best to you my friend.
Just been reading your posts. I am currently getting chemo at Raigmore, Inverness for mantle cell lymphoma. Just finished round 4of 6 yesterday prior to autologous stem cell transplant in Aberdeen, probably May or June. Great bunch of doctors and nurses. Just wondered how you went south instead of Aberdeen for your SCT?
Hi Johnwashere, small world. The folks at Raigmore are amazing :) I know them all very well as I have spent a lot of time in the ward..... remember and ask for the ward Internet pass word ;)
My Lymphoma was a rather rare type of T-cell and one of the SCT team at The Beatson had expereance in my condition before moving into SCT. I also had to have some very specific radiotherapy both times so The Beatson was well set up for it.
You will have seen we were away from home for a total of 11/12 weeks so again The Beatson was great as my wife had a free room next to the ward and our oldest doughter stays in Edinburgh so it all worked well.
We have a dedicated SCT forum (link) it's a great place to meet folks who are going through or have been through the journey. I help run this forum for Macmillan from Inverness so any questions just post them to me and the rest of the forum.
This is a link to the Macmillan SCT info page.
Take care and I am sure I will see you around on the Community.
Hi Johnwashere I do hope that your treatment went well.
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