1997-2020
In July 1997 I came home to Cornwall after a trip to Southampton to see my children and celebrate my son’s 21st birthday. I was unwell with a sore throat and temperature. 3 weeks later, I was admitted to hospital with a temperature of 104 and yellow with jaundice. Another 3 weeks. Doctors scratched their heads, talked about glandular fever and Epstein Barr virus, pumped me full of antibiotics and I slowly recovered. There was talk of discharging me, but one doctor decided to give me a liver biopsy and the result showed I had a rare form of lymphoma - hepato-splenic T cell Non Hodgkin’s Lymphoma.
Fast forward 8 months, 6 cycles of CHOP and a stem cell transplant later, I was discharged from hospital on the same day the Good Friday Agreement was signed and got on with the rest of my life. In the next 22 years, I completed my Open University Degree, meet all my grandchildren, celebrated my silver wedding anniversary, travelled, started a career in an interesting part of the civil service, moved to Somerset, acquired an allotment, and did a lot of walking. In March 2020, just as coronavirus was ramping up, I closed my work laptop for the last time and looked forward to retirement. I was 64.
The only other health problems I had suffered during this period, were occasional coughs and colds and one of life's curses, haemorrhoids and an anal fissure. A couple of undignified procedures sorted these out.
I will never know if the throat infection I had in December 2019 was significant or not in what came next. I do know that, unusually, the lymph glands in my neck were swollen for a couple of days. I was a little worried about it, but then they went back down again as the infection receded. I put it to the back of my mind.
In June 2020, I was starting to have problems with my bowels with what I thought was constipation. I upped my fibre, sprinkled more linseed and fruit on my morning porridge and drank lots of water. It didn’t seem to help. I then had to resort to fybogel, senna and other laxatives. Things got moving again, but I noticed a slight pain in my bum, right on the spot where I had an operation 10 years ago to fix an anal fissure. Not too worried, I continued with my COVID restricted retirement plans. I walked the Stour Valley Way, some 64 miles in short bursts over the summer. My bowels were still not right, and I noticed that my stools were becoming thinner. We had a holiday in Shropshire lined up In September and I was determined to walk up the Wrekin. It was during this holiday, when I was up most nights not able to sleep, bowels all over the place, more reliance on laxatives, that I realised that I needed to get this looked at when I got home. Doctor’s appointment was made on my return, and after rummaging around in my back passage my GP informed me that he had found a lump. I was fast tracked to the colorectal consultant at the local hospital. Yes there was definitely a lump and a colonoscopy was arranged.
3rd October 2020: The Colonoscopy
Today I have a date with day surgery at my local hospital for a colonoscopy, which means the great nuclear clear-out of my bowels with Plenvu prep, so that they can get a good look at what is going on. Yesterday morning was a bit trying as I noticed , when I was filling up the kettle for my morning cuppa, that the water pressure was low. Very odd – a quick check upstairs and NO WATER in the bathroom. How on earth am I going to get through the drinking lots of water and a marathon session with the toilet if I don’t have fully functioning plumbing!. Grabbing a variety of containers, buckets, and saucepans, I fill what I can from the slow running downstairs tap in preparation. I just hope that this is not a problem in our house that needs to be fixed as I am in self isolation prior to my procedure and cannot really have anyone in or go somewhere else. I look up the village Facebook page and post “Is anyone having problems with low water pressure?” Within minutes I learn that there has been a major water main burst and Wessex Water are working on it. Great Anxiety levels reduced a bit, but I spend most of the day checking the village Facebook page for updates. Water comes back about 3pm.
In preparation for the nuclear clearout, I have been on a low residue diet for a number of days, which means all my usual diet of healthy stool bulking food is out of the window. The last dinner on Friday was fish, potato made more interesting with laughing cow cheese. White toast for breakfast and toast and Bovril for lunch then no food until Saturday evening. I prepare the Plenvu, a strange mango flavour followed by a pint of water. and wait expectedly. 2 hours pass rumbling in the stomach and then…… a mad dash to the loo, where I seemed to stay for the next hour. Celebrities pay thousands for colonic irrigations and here I am getting the same effect for free. I camp out in the guest room for the rest of the evening, catching up on episodes of the Repair Shop to pass the time.
6am another Plenvu preparation and pretty much a repeat of the previous evening. Thank God for Vaseline to take the sting out of the tail. Hubby and I have to co-ordinate our bathroom access carefully and by 10 am things have calmed down- so a soothing bath and ready to go. At 12 I get a phone call from the hospital “Would I like to come in a bit earlier as they have had a cancellation” so off I go. Hubby drops me off outside and with some trepidation I make my way to the day surgery unit.
I am shown into a cubicle and invited to put on a gown and some sexy black paper bloomers (to protect my dignity) great look…. Consent forms, blood pressure (167/83 a bit high for me) and health questionnaire done, and we discuss sedation options. I opt for full sedation this time. The nurses ask how I am. “I’m a bit anxious” I reply. She says not to worry the procedure is straightforward. I tell her it’s not the procedure I am worried about as I have had 3 done before, it’s the outcome of what they might find that I am anxious about and as I am in some discomfort, I am worried about pain. She smiles at me and says she will have a word about have some pain-relieving gel applied as part of the procedure. I sit and wait. A lady in the other cubicle is having a similar discussion and laughing with the nurse about her experience of Plenvu, I smile to myself. I brought a book, but I can’t concentrate on it, so I log onto the internet and read the news or Facebook posts to distract myself. Then I am called into the room full of equipment and lights and the procedure begins. I get a front row seat of the view of my colon and the problem is very apparent straight away. I’d rather not look but there is something slightly fascinating about viewing your insides. Great pictures too. It is soon over and I am taken back to the cubicle and given a cup of tea, and 3 ginger biscuits.
After a while another blood pressure reading (120/80 that’s better) the nurse says would I like to call my husband to come in which I do. After 5 mins she comes back and says can I ask my husband to park up in the car park so he can come in when the doctor sees me. Alarms bells start going off in my head, there is going to be bad news. I say he has already left and that I am not sure it is a good idea for him to be here when I see the doctor. She goes off and after a while the doctor comes into the cubicle. Without much finesse I am shown the pictures and told I have a tumour in my bowel, he gives me the report and there I read “20mm tumour likely malignant” just 4 words. The nurse comes back and looks sad and asks me if there is anything I want. “Yes” I said “a fucking Grouse whisky”. She laughs and then smiles “not today you can't you have had sedation”. I tear up a bit, my worst fears realised, I struggle to understand how this has come about. I ask about what I should eat now. She isn’t sure and goes to find out. She stays with me and walks me to the main entrance until my husband arrives.
I get in the car. “How did it go” he asks. “OK, I’ll tell you about it when I get home”. It’s a quiet, wet and miserable 30-minute journey home. I tell him, he doesn’t a take it in fully, but gets the gist. He holds out pretty well. It’s déjà vu, we’ve been here 23 years ago, another time, another cancer.
Surprisingly I’m hungry. I want comfort food, cheesy beans on toast and then banana and clotted cream ice cream. We are both quiet, lost in or own thoughts. I am on Google looking for support groups and register with BowelCancerUK. I read up on treatments and surgery. There is a long road ahead.
The first few days
Sunday October 4th 2020. I start off in our double bed, but I can’t sleep, so I decamp to the guest room again. I try the BBC Sounds app “Sleeping Forecast” to help me drop off, with some success. Nature calls again and I can’t get back to sleep. I bring up Iplayer on the computer and binge watch “ Years and Years” I barely make it through the first episode and drift off, but its fitful. I get up about 6ish and make a cup of tea and come back for a while – I just can’t settle. I have porridge for breakfast, it’s a struggle to get it down. The weather is awful wet, dull. We chat a bit, but skirt around the issue. I feel tired and low, the sedation from yesterday is still in my system. I just want to sleep and spend most of the day lounging on the sofa and dozing off and on. I’ve not much appetite, but manage Bovril and a slice of bread for lunch. I cook lamb chops, with mash and vegetables for dinner it’s tasteless and a struggle. It’s a quiet evening, I am expecting my sister to call, but secretly I am glad that she didn’t. I’ve not got my communication strategy sorted out yet. I post something on the Community page on BowelCancerUK. website about how I am trying to make sense of it all. Which I am, what did I miss, how come in a matter of weeks I have gone from a fully functioning bowel to one that is diseased. The timescales of the last few months punctuated by my Stour Valley Way Walks and how I was feeling at the time becomes a chronology of my problematic bowel movements. I try to order the chain of events in case I get asked by doctors. I am cross with myself for not doing something sooner. The posts of the bowel cancer community are encouraging. I am so tired I go to bed and sleep for 6 hours straight off.
Monday 5th October. I feel refreshed, toast for breakfast and then I get myself ready for my MRI scan at 11.00. 9am the phone rings, I pick it up thinking it is going to be my sister, but is the colorectal clinician nurse Sarah inviting me in for an appointment before my scan. We meet later on at 10.30. Within a minute I am crying, telling her I can’t make sense of it, how I ate a healthy diet, upset I didn’t come earlier and how I mistook my symptoms as piles and an anal fissure. She looks at me kindly and tells me not to beat myself up about it, that I did the right thing, and that in the great scheme of things the timescales are small. That makes me feel better. We talk about diet and I learn I should be on a low residue diet, so baked beans are definitely out. Bugger! We talk stool softeners, next appointments, blood tests. Tears are not far away, it all feels so familiar. I have her phone number and she is going to inform my GP. She gives me a couple of paper slips which tells me that as I am having cancer treatment and I can claim free parking. That brings it home– I am a cancer patient. No room for any doubt then. I head off to X ray. MRIs are running late, I go and have my blood test and come back. Another questionnaire. I read the low residue diet booklet and find that I can eat cake, biscuits, cornflakes, white pasta and all the foods that I have spent that last 20 off years avoiding. Silver linings in a perverse way. The radiologist comes in. She is called Verity and I say that it’s a pretty name. Thank you she says. I ask her whether she is named after the Poldark character and she says that she it. Her mother has read all the books and watched the first series. I tell her than I am a big Poldark fan, she smiles and asks me what I thought of the latest adaptation. I told I thought it was well done. We head off to the MRI scan, and she explains the procedure and would I like some music. I select Classic FM, but the MRI scan is so noisy, I can’t hear it. The rhythmic pattern of the noise is a fast 4/4 beat and I find the Beatles “Ticket to Ride” going through my head. I try other songs but somehow this song draws me back. When its finished I tell Verity this and she laughs and talked about a patient who wished he had a Phil Collins drum solo as the music choice. I leave, pick up my free parking voucher and head home. I am feeling and looking better today. My sister has rung and hubby has said they have found an ulcer but nothing more. I ring her back and bring her up to date with the tests I have had. She probes a bit but I am not ready to share, and amuse her with tales of the water going off and the benefits of a colonic clear out. Sausages and squash for dinner. I must do some shopping to reassess the fridge contents. The sweetcorn, lovingly nurtured on my allotment is consigned to the compost heap, along with some pak choi. Squash is the only option I have in the house. I am allowed tinned fruit so I open up a can of peaches and have that with the last of the Kelly’s Clotted cream ice cream. More comfort food. In between this I drink Cosmocol to try and get my bowels moving a bit and then my bodyweight in water. Nothing doing yet. By 10 I am tired and go to bed.
Tuesday 6th October. Another poor night’s sleep. I woke up just after 2 am with a bladder fit to bust with all the water I am drinking. Still no bowel movement other than wet farts which I am not sure counts. I am restless and cannot get back to sleep. My bottom hurts so more paracetamol with a cup of tea. I am tired of drinking water. Sitting in the bath helps the pain which is constant reminder of the cancer’s presence every waking minute. I try another Sounds Sleep forecast but it doesn’t work. At about 4am I give up and start writing a diary. Cornflakes for breakfast as I stick to the low residue diet, but of course I need to dispose of the beans and wholemeal bread I had on Saturday night. The cat is acting strangely and joins me in the spare bedroom most nights. I would love to share a double bed with hubby but I can’t settle there and I know I will just disturb him. I think he is struggling a bit.
Bowel movement success of sorts in that I managed to pass a small amount of something. The pain is excruciating, so another sit in the bath and a dose of painkillers. Difficult day today as I am spending some time with my sisters to remember our Mum who would have been 100 today. I am tired and fretful about this. We take some flowers to the church where she was baptised, sing Happy Birthday and then go to a local farm shops which has a café. I am faced with a menu with little choice for my low residue diet. I feel a wobble coming on but choose jacket potato with cheese and give the salad to my sisters who tuck into ham and eggs. I feel dejected and shaky as well, I’m on the brink of saying something, but don’t want to spoil our time together. I finish off with a clotted cream ice cream which was nice My life is governed by my bowels and whether I can go or not. I manage ham, egg noodles and tinned tomatoes for dinner plus tinned peached and yoghurt. It feels all wrong, and I fart a lot and it smells awful. In fact, the whole house appears to seems to smell of my bowels. I hate it. I go to bed early to try and get some sleep. I am tearful and just long for the Plenvu to clear me out again. I might speak to the nurse about it tomorrow. Hubby looks tired. I am having a small whisky for the hell of it.
Wednesday 7th October 2020. Whisky must have worked as I managed about 8 hours sleep with just a short wee break. BBC sounds Sleeping forecast got me back off again and I didn’t wake up until 7.40. I feel better as a result. I can also report some movement on the bowels too, not spectacular but heading in the right direction although still painful and loose. Combination of paracetamol and Ibuprofen seems to work at keeping pain at bay as well as a warm bath. I went to the allotment today and did some tidying up. Plans for the autumn /winter months may be on hold and I may have to rethink what I grow. I felt so much better for being outside. Stocked up on pasta and other non residue food. I went for a walk as well. I just wish I could get the pain relief right. Spoke to CR nurse about bowel movements who thinks I may be taking too much Cosmocol and suggested reducing it. I am now paranoid about not getting constipated especially on this new diet.
Thursday 8th October 2020. Another sleep of two halves as I cannot get though the night without a call of nature halfway through but I have managed at least 7 hours. Bowels have woken up and definitely more activity and volume. I have reduced the sachets to 2, but think I might be able to get away with one. Bowels practically dominate my life, from timing when I can go out and planning meals. I have a day of more medical appointments a flu jab and then a CT scan. I am feeling better in myself and needing less painkillers today. Hoisin chicken and noodles for dinner and some stewed apple and yoghurt. I set up a walk with a friend next week which is positive..
Friday 9th to Tuesday 13 October 2020. Our long-anticipated trip to Cornwall today. This was my retirement treat postponed from March owing to COVID. I had a so- so night and bowels are just not co-operating at all. I burst into tears looking at the state of the fridge and am inconsolable for about 5 mins. The uncertainty is taking its toll. Hubby drives to Cornwall most of the way and the rain over Dartmoor and Bodmin Moor is atrocious. I suits my mood. We arrive sat Crantock at about 2pm. A quick drink in the pub and some lunch. I stare at the menu looking for a low residue option. I plump for the soup of the day, after interrogating the waitress on its ingredients. It is tomato and tarragon soup served with white bread and was tasty. I go for a walk on the beach to clear my head. The cottage is nice, but I am fretting over the downstairs toilet and potentially soiling the bedlinen. I shop at the local shop and bring home some ready meals as I can’t face having to make a choice from the pub menu again.
The next weather is windy but dry and we go for a walk along Crantock beach. It feels good to something normal and in the fresh air. We are in Cornwall and pasties are the order of the day. They are tasty but the experience is marred by having to pick all the onion out (not allowed on the low residue diets). I drive to Perranporth and walk to Winston Graham’s memorial bench and sit on it to admire the view. I have walked over 11k steps today and feel a bit better.
Sunday we go to Boscastle. It is windy and showery. I have a sandwich of the Cobweb Inn and we then head back to the cottage. It’s lovely afternoon and I drive to Polly Joke beach, my favourite beach in Cornwall, and a walk towards Holywell bay. I pass a cove with loads of grey seals basking in the sun. It has made my weekend.
Monday and the weather is horrible. We go to the Eden project. I have reduced the Cosmocol right down to half a dose, but wandering around the Eden project my bottom gets tight and I am fretful. I do not have a bowel movement all day and trying to force one is a big mistake. So much pain it makes me cry. We have fish and chips in the pub, which I pick over as best I can. I am feeling a bit low.
We arrive home on Tuesday and there is a phone message to ring the colorectal consultant’s secretary. I have appointment this Friday, but the secretary says that the doctor will give me the biopsy results over phone and no need to come in. 20 mins later a phone rings. It is the consultant who tells me he has the biopsy results. The biopsy is showing lymphoma cells, and this is not what I or he was expecting. He is now going to refer me to the haematology team. This means chemotherapy again and a reprise of 23 years ago. I am stunned… Bath and early bed to watch Bake off. I feel lost and very down.
Wednesday 14th October 2020. I have a reasonable night’s sleep but and I could do with the cat not coming in and making a noise in the early hours of the morning. I have a good bowel movement today but pain afterwards is excruciating. I have had enough of this, so sent a message my GP via Ask my GP service. 30 mins later a phone call and I have a proper prescription for the pain which I will pick up later today. I go to the allotment for an hour or so, digging weeks and moving raspberry bushes. This makes me feel better as do the painkillers. Mentally I’m okish, but really just want a clear diagnosis and treatment plan. This waiting around is difficult.
Thursday 15th October 2020. I manage a fairly good night’s sleep. No painkillers either which is good news. It is a nice day with a nice dawn chorus and I went for walk with new walking buddy. Her husband went through cancer a couple of years ago. Chatting to her did me a world of good, just to get things off my chest. .
Next few days. The story is poor sleep, box set bingeing in the early hours, unpredictable bowels, wind toilet anxiety, sore bum and painkillers.
The Diagnosis
Wednesday 21st October 2020. My appointment with the haematologist today. I am apprehensive and feel sick. The only good part of the day was a decent poo in the morning . I have Diffuse large B cell non Hodgkin’s lymphoma in my rectum. It is not a reoccurrence of my previous NHL, but a whole new diagnosis. The treatment is similar -RCHOP, but because I have had 6 previous cycles of CHOP am limited to how much as vincristine I can have as it is toxic to the heart and I can only have 3 more doses. The CT scan shows that the lymphoma is fairly localised with some nearby lymph glands involved. However, the consultant wants a PET scan to be sure. This makes radiotherapy an option to eradicate the disease. I don’t know what stage it is yet other than it is high grade. It is common and curable apparently, which is good news. To get NHL twice is more than just bad luck so it is likely there is some underling genetic reason – I always thought I had a rubbish immune system and also having had chemo and cancer before it increases the likelihood of a second cancer. Hubby is quiet and is feeling the strain, by 7 in the evening I am tearful and just want to sleep for ever. I decide to break the news to the family today, but can’t face doing it by phone several times. Everyone gets an email. Life is shit.
Scans, kind friends, preparing for first treatment and trouble down below
The news is out now, and kindness abounds. I treat myself to some new bright loungewear to cheer myself up. I have decided to go for a bohemian look, floaty and flowery. Now I am clinically vulnerable, shopping is all online and I have kept Amazon very busy. Parcels come almost everyday and one day I receive a parcel with goods I have not ordered. I am just about to seek out the delivery man, when I notice that the parcel is from a group of school friends who I met up with last year for a school year reunion. I am so touched with their kindness. I have a box of goodies with hand cream, books, bed socks, a bean hat and light weight dressing gown. People have been so kind. My walking buddy has knitted me a scarf, my daughter has sent a plant for me to nurture, and there are a few chocolates. I have gone public on Facebook too and everyone sends there best wishes. It is cheering when people say nice things about me. I book an appointment with my hairdresser and ask her to cut my hair as short as she dares. I explain that I am having chemotherapy treatment and need it all off. And there I was nurturing my new longer post lockdown look. My first chemotherapy session is planned for 17th November and I have a PET scan booked on the 12th, another new experience and a trip to Taunton is needed which is an 80-mile round trip. On the morning of 12th, I wake up with bubbling wind down below, which doesn’t appear to be coming from the right orifice but I am not sure if my imagination is playing tricks. It happens again. So I troop off to the bathroom and investigate. I have some faecal liquid coming from somewhere it shouldn’t. I do what everyone says you shouldn’t do and Google the symptoms. The Macmillan pages come up. I have a fistula. The cancer has caused an abscess, a tract has broken through to the outside in my lady bits. I am on the phone to the Haematology nurse, fully aware of the implications this might have on my chemotherapy. My lymphoma is graded at Stage 1E and is localised and possible its chemo followed by radiotherapy, but the radiologist is now concerned about the fistula. There is a flurry of activity and I am taking phone calls from my GP and the hospital whilst waiting for my PET scan. They are going to consult with the colorectal consultant. The next day he rings me and we discuss my symptoms and he accepts that my diagnosis is correct. There is now an increased risk of infection during chemotherapy now, but we agree that it needs to go ahead as curing the cancer is top priority. The Sunday newspapers are full of Tracey Emmen and her cancer and how it has spread to her vagina, bladder and bowel and the operations she has had. It freaks me out that I might be heading the same way. I can’t read it anymore.
RCHOP x 4 and Black Friday
November 17th 2020 and it’s Deja Vu. . 8 hours in the clinic having my first RCHOP. The R bit (Rituximab) has to be given over 6 hours to make sure I do not have a reaction. Thankfully I don’t. Then it’s the CHOP bit, anti-sickness pills, steroids, paracetamol. It goes OK not too much nausea. I am warned that the anti-sickness pills and chemotherapy will make me constipated so I up the Movicol as I have also been warned yet again, that I cannot afford to get bunged up as my bowel has narrowed from the tumour.. I also have to inject my self for 5 days with filgrastim to prevent my white cells lowering too much mid cycle. A new skill to learn. My fistula is clearing out and I am losing a lot a slough from the opening. I’m also losing a lot of faecal matter as well, which I am struggling to contain with panty liners. On Friday, 4 days after my chemo treatment, I cannot contain the faecal matter, I soil myself, spend hours on the loo. I contact the Haematologist nurse and go through my symptoms. She is not impressed that I have been left to deal with this on my own and suggests I contact my GP, whilst she consults at the hospital. I get hold of the GP surgery who is also not impressed with the service I am getting from the colorectal side and he is behind the curve with updates on my treatment, so I bring him up to date. I am booked in to see the nurse practitioner early evening. I am a mess and breakdown completely when I see her. She holds my hand and tells me she has seen it all before and takes a look down below. She confirms it is pouring out, suggests I reduce the laxative and that she will contact the incontinence team for further advice. I stock up on incontinence pads and am totally miserable. I am at my lowest point and a whole weekend stretches ahead.
Big girl’s knickers, nappy liners and self injecting
I struggle through the weekend, cheered by the speedy delivery of bulk incontinence pads, by Amazon and some maternity knickers, which look like the sort of knickers I wore for PE as a young girl. Things have calmed down a bit now as I have reduced the laxative dose. I get a call from the incontinence people who talk me though options and samples I can try and what I am entitled to on the NHS. She also suggests using nappy liners - so another trip to the Amazon page. Deep joy. I get a follow up call from the practitioner nurse too who is impressed by the practical steps I have taken.
The steroids want me to eat for England and my energy levels are good but now I have to manage the injections. Pinching an inch and its surprisingly easy but the impact of the injection upsets my tummy and again I have to reconsider the laxative dose. It’s becoming a balancing act. I expected the same sudden dip mid cycle that I had first time around, but this time its more 5 days of feeling meh. By week three my energy levels are good and its onto the next cycle. First time around I tolerated chemotherapy pretty well and this time around it is much the same. Rounds 2 3 and 4 are much the same other than I move onto 1 injection of pegfilgrastim The balancing act of the laxatives continue, but I am now my own expert of my bowels and they become predictable, other than a couple of spectacular accidents at night. Slowly, the fistula situation improves to the extent that I can disregard incontinence pants and back to panty liners. It is manageable.
Progress
I start losing my hair in week 2. I eschew wigs to pander to my new bohemian look. I seek out my most colourful scarves and treat myself to some cheap big earrings to complete the look. I treat myself to some new make up as well and following " the look good feel better " adage, tart myself up most days when I feel up to it. After one cycle I can feel a difference in the back passage. Pooing is easier and not so traumatic and I am pain free, not having to rely on the naproxen and paracetamol anymore. Everything is positive. A PET scan after cycle 3 shows a good response to the treatment to the extent that radiotherapy is now a feasible option after cycle 4. The chemotherapy for cycle 4 on January 28th 2021 is a different mix, as I have had my full dose of vincristine and it is replaced with something else. I have a telephone call with the oncologist who will supervise the radiotherapy, which is planned for March 2021. All is good.
The colorectal side want me to have an MRI scan, which duly takes place and then out of the blue I have an appointment to see a consultant at a different hospital. The MRI scan is degraded, and he wants me to have another. He talks me through options, which involves having a stoma and is not entirely happy with the radiotherapy taking place and thinks there is risk. This freaks me out as I had thought I had talked this through with the oncologist. He says he will discuss things with my consultant. I hear no more and the first radiotherapy takes place on 22nd March 2021. The oncologist seeks me out at the end of the first week of radiotherapy and reassures me that the cancer treatment has to take priority and cannot understand the colorectal consultant’s approach. Obviously they are talking at cross purposes,
Radiotherapy is for 3 weeks every day, which involves an 80 mile round trip.
It is pretty uneventful but I do feel like James Bond when lying on the table from that famous scene in Goldfinger. “No Mr Bond I expect you to die.” Zap those troublesome cells......
The room looks like a film set, The balance of laxatives to side effects of the radiotherapy continues, but everything is manageable.
They tell you about soreness post radiotherapy treatment and this kicks in a week later after my treatment finished. My lady bits and bottom are red raw and sore. Goodness knows what is happening at the target spot internally. I waft around knickerless in floaty dresses to circulate the air. A quick phone call to the radiotherapy team and ointment and foam dressings are dispatched. They also advised salt baths, so I unearth the sitz bath and my best kitchen sea salt is brought into service. It all makes a difference and after a week the soreness settles down. Then the fatigue kicks in, jobs I could sail through now takes a huge effort. Walking is out for a while too. This is disappointing as my mileage and pace were improving. Then add a second COVID jab to the mix and my body finally waves the white flag. Not quite another black Friday but my mood is low for several days.
I’m not out of the woods yet, but I am hopeful that I will beat this bugger of a disease. The fistula is still work in progress but for now my cancer treatment is over and I have a 3 month wait until the results can be seen. It is possible I will still need an operation to allow this to heal.
Big triumphs and little triumphs
LIfe has become celebrating big triumphs and the little daily triumphs. The big triumph is that treatment is working and the prize, a complete cure. The cancer team have been brilliant and the Macmillian website a life saver.
The little triumphs are those things that have made life easier and keep me positive (most of the time)
There is still a way to go, but I try to keep positive. It's not easy. Some days I get overwhelmed by it all and tearful. Other days I am so bloody angry that I am having to go through this again.
I live in hope that the wonderful NHS will get me through it and there is light at the end of the tunnel.
UPDATE JULY 2020
I am in remission. The PET Scan has shown that there is a massive reduction in the disease. I am not sure I can take it in. The fistula still needs to be sorted out but even that has improved and its great to wear my normal knickers again. I am back walking, the allotment is full of soft fruit and I can also make some changes to my diet. I am ever thankful to the NHS for geting me through this again.
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