September 2021

Friday 3rd September 2021

This afternoon I had a telephone appointment with one of the breast care nurses. I’d received a letter from them enclosing a lot of bumf about alternative support that they offer at the Lodge, run by Macmillans. There were leaflets about yoga and relaxation classes and wig fitting and prosthetics and so on. Also enclosed was a sheet of check boxes to tick for loads of things one might be worried about – practical, emotional, financial, physical issues etc. They asked me to complete this in advance of the appointment.

I found that I didn’t need to tick a single box! I’m really not worried about anything. My faith is strong, and half the time I’m too busy enjoying life to be even thinking about cancer. I’m doing really well and have recovered very well from the surgery.

As a result, the phone appointment was short and sweet! We discussed potential problems which might arise from the radiotherapy (still no date for that) and she said they had creams for burnt skin etc. and if I experienced any problems with this, all I needed to do was give them a call and they’d see me in the clinic probably the following day and kit me out with whatever I needed. We also discussed the possibility I may need a partial prosthesis if my breast shrinks much more after the radiotherapy and she said that would be no problem. The new bras they’ve supplied me with have pockets in the lining to accommodate these prostheses if necessary.

She said they would follow me up in about 8 weeks when things had settled down after the radiotherapy but if I had any problems, just to give them a call and they’d see me sooner.

She asked me how I was getting on with my oestrogen blocking medication. I am not doing too badly with this. I’m getting on average 3-4 hot flushes per day and they are not as bad as when I was going through the menopause. She was pleased that I was coping OK with it.

One of the potential side effects is bone and joint pain, and I discovered immediately after my phone appointment that I’d developed TMJ (temporomandibular joint) syndrome – painful jaw joint on one side – I had two attacks of this back in 2007 when I was first going downhill with my ME. I haven’t had it since, and I don’t think it’s coincidence that it’s happening shortly after starting a medication known to cause joint and bone pain. I looked up some physiotherapy sites and have found some exercises to do, and I took some ibuprofen which helped. Hopefully this will pass, and I won’t develop pain anywhere else. I am continuing to do the shoulder exercises the breast unit gave me to do after surgery – it will be important to keep my left shoulder moving after the radiotherapy so I don’t anticipate stopping doing these any time soon. They are very easy and only take a few minutes three times a day. I can pull my funny faces with my jaw exercises at the same time!

 

Tuesday 7th September 2021

Today I received a phone call from the hospital calling me in for my first radiotherapy treatment – on Thursday! She apologised for the short notice and hoped it would be OK for me to attend. My hubby has been able either to cancel or postpone anything he had down. I said that I thought the treatments had to be on five successive days, i.e. Monday to Friday, but she said starting on Thursday would be fine; I’d have the weekend off, and then have the final three treatments on Monday, Tuesday and Wednesday of next week. She gave me the times for Thursday and Friday, and said I would be given a schedule of times for the other treatments when I came on Thursday.

 

Thursday 9th September 2021

Radiotherapy begins

When I arrived I was sent to a different waiting room from before, and when they called me, I was taken into an examination room where one of the radiographers discussed the treatment with me. I had to sign the consent form again and was given a copy. This is the same form that I signed when I saw Dr. Goodman (the oncologist) and he had ticked the relevant boxes indicating what side effects I could expect, in the immediate aftermath of the treatment and more long-term. Unfortunately the handwriting on the copy I have is very faint and not really legible, so when I go in tomorrow, I am going to ask the radiographer if she could complete those details again for me on my copy.

We discussed the possibility of my skin suffering something similar to sunburn, and she said they had creams, and did I have a good moisturiser that I liked? I told her about Udderly Smooth, the wonderful cow cream that I was introduced to when I was having chemo for my colon cancer. She hadn’t heard of this before, so I told her about it. It was originally developed to apply to the udders of cows to prevent cracking and mastitis, but the dairy farmers reported that it made their hands lovely and soft, so the company started marketing it for humans too. They retained the distinctive name and labelling. The hospital provides this routinely on the chemo unit, because chemotherapy can cause the skin on one’s hands and feet to break down. As soon as I began using this cream I loved it, and after my treatment was finished and I was no longer entitled to get it free from the hospital, I have been buying it ever since.

She said she would have to check that it was OK. Some creams contain metallic minerals which are not recommended. She later told me that Udderly Smooth would be fine. I am pleased about this because I am used to it; it is also readily absorbed and non-greasy, which means I will not have to rub the skin excessively to cause it to be absorbed.

She said that if I experienced any problems or was worried about my skin or anything else, I could phone and they would advise me, for instance if my skin blisters and breaks down, there are other things they can do other than the application of a moisturiser.

She then led me to a cubicle where I was instructed to change into the gown which I had worn for my planning session. I am to take this home each day and wear it for each treatment. This makes sense, as there is no point in having a clean one for every session. The breast gowns are very neat and practical; they are like a jacket, opening with press studs down the front, and the shoulders also open in the same manner, so that one or both breasts can be exposed. You do not need to undress your bottom half for the treatments.

When I was ready, I was led into the treatment room. The table was the same as the one they had set up for my planning appointment, so they did not need to adjust any of its settings. Only the machine was different.

I noticed that the far wall of the room had been beautifully decorated with wallpaper to resemble a forest scene, even covering over the various cupboards. Looking up, several of the ceiling panels had been replaced with pictures of the sky with pretty clouds, and the branches of overhanging spring-foliage trees. I remarked on this and said how lovely it was, and she said “wait till we dim the lights” – these panels were illuminated from behind. I think it is very nice that they have done everything they can to make the setting look less clinical and to give one something attractive to look at while lying down having the treatment – although for most of the time the machine blocked the view! They certainly do their best to put one at one’s ease and make the whole procedure as pleasant as it is possible to be.

This picture downloaded from the Internet shows what the machine is like. It can be moved and rotated in order to target the beam of radiation exactly where they have directed it.

Initially, getting onto the table was very uncomfortable, and something seemed to be digging into my upper back, but after a few minutes as I relaxed my body, I found everything to be much more comfortable. As before, my arms went to sleep fairly rapidly and at the end of the session I had to have help moving them as I couldn’t feel them at all, and it was quite uncomfortale. They very soon recovered, though.

The majority of the time was spent manoeuvring me into position. I had to relax completely and let the radiographers move my body for me, so that I was in exactly the right position. The movements they made were minimal but it was obviously critical that everything was accurately placed. As you can see in the photo above, they used green laser lights to line things up, matching them to the tattoos they had put on me previously. They also made a lot of marks on me with a red felt-tip pen which they said would probably stay on me for the duration of all the treatments; they told me not to scrub them off (and anyway I’ve got to be careful with my skin), but not to worry if they faded too much in the shower; they could always redo them. They did a couple of imaging scans just to make sure everything was OK, and we did some practice runs with the breath-hold technique.

Once everything was set up correctly, they left the room and the chief radiographer spoke to me throughout, via an intercom.

She would tell me to take a breath and hold it, and would count, and then say “breathe away,” and I could breathe normally until the next time. Some of the breath-holds were very short, of only one or two seconds’ duration, but others were up to a slow count of 13 or 14. This wasn’t a problem for me as I’ve learnt breath control through singing lessons in the past.

Before the treatment began, one of them came in and pulled a cable down from a device in the ceiling with a sensor on the end of it, and this was taped to my breast. This sensor could tell the machine if I was not breathing deeply enough to create sufficient distance between my heart and the treatment area, and would automatically terminate the radiation beam, turning it back on again once I was able to breathe in adequately as instructed. Half way through the treatment, it was removed and placed on the other side of my body.

The machine made a slight noise as each burst of radiation was given, but I did not feel anything. The machine was able to be rotated around so that the whole breast would receive the radiation. This was done in two stages, beginning on the left side and then after the sensor was repositioned, on the right side. I think the whole thing took about 20 minutes. I lost track of the time and it all took quite a long time allowing for all the positioning and testing beforehand.

Once it was finished, they helped me to sit up with the aid of a strap placed under my upper back – I cannot sit up without pulling on something, and the bed was too narrow to get enough purchase. (They did this for me at my planning appointment too.) Also, with all the restraints, it was difficult to move! I was then allowed to leave, and as I was going, the radiographer in charge said that I had done everything perfectly and performed exactly as they required, and congratulated me – “You’ve done splendidly. You can come again,” she said! Haha. I said “I’ll see you tomorrow!” I returned to the cubicle to change and at this point I phoned my hubby to let him know I would soon be ready to be collected. He wasn’t far off and by the time I reached the exit, he was there in the car park waiting for me.

That evening I felt no effects from the treatment. I can expect to notice some skin changes beginning about half way through the course of treatments. The worst of the effects are likely to reach their peak about a fortnight after the treatments have been completed. They have to warn one about all the possible side-effects but this does not mean that one will get them all, or any of them. Some are almost inevitable, such as the fatigue and some skin symptoms, but the extent of the effects is going to vary from person to person. There are many things that can affect how bad the skin symptoms will be, such as whether one has a fair skin that burns easily in the sun, one’s age, whether one smokes, whether one is also having, or has had, chemotherapy, and whether one has any existing conditions such as eczema. The areas likely to be affected most severely are the crease under the breast, and the underarm area, where skin rubs against skin, and where clothing is likely to rub. They recommend loose clothing, preferably cotton, so I may have to go bra-less for a while. Anyway, we shall see. It’s best to be prepared, but hopefully it won’t be too bad.

Longer-term, I can expect further shrinkage of my already smaller left breast, and the tissue feeling denser, harder and more fibrous. There may be some “spider veins” visible under the skin, as a result of damage to blood vessels in the area. Hopefully there will be no damage to my heart and its immediate blood vessels; the breath-hold technique has been proved to be very effective in preventing this.

I started the moisturising that evening. This needs to be done twice a day, and the area needs to be kept clean, using a very mild, unperfumed soap, and preferably without a wash-cloth which could abrade the skin, and then patted dry with a soft towel. Apart from the gentle moisturiser, they do not recommend the application of other skin preparations, although deodorant is OK – I have not been told not to use an aluminium-based one, but on the advice I’ve found online, I have already purchased a mild, mineral free one which I used immediately post-operatively, and which I am now using again, just to be on the safe side.

I mentioned to the radiographer when I arrived, that I was suffering from TMJ syndrome and that I thought this was most likely a side-effect of the exemestane (oestrogen-blocking drug) that I was taking, since one of the side-effects common with this drug is joint and bone pain. I told her I was doing exercises which I’d found on a physiotherapy site online, and she said to continue with that, but if it got any worse, to let the oncologist or clinical nurse specialist know. I said I didn’t think there was really anything that they could do, but my hubby had suggested I mentioned it to them.

So, the journey has begun. It was a very interesting experience, and I was fascinated by the technology and the need for such precision, and I was also very impressed with the professionalism of the staff, and how friendly and sweet they were. When I was in the waiting room beforehand, the previous patient to be treated returned to join his wife, and he said to me, “They are a lovely bunch of ladies! You will be all right.” I told the radiographer this on my way out, and she was pleased; she also said that gentleman was a tremendous person. Certainly it has been my experience with cancer, that during the course of one’s treatment, one meets the most amazing people who have faced so much, and deal with it with courage. I count it a privilege to have encountered such people. I know it’s a cliche, but there’s always someone worse off than oneself! While the world goes to rack and ruin, with worthless individuals with no integrity carrying off all the accolades and fame and fortune, the unsung heroes of our society – those who suffer with fortitude, and those who treat them and care for them, go unrewarded apart from the knowledge of a job well done. Hats off to them.

 

Friday 10th September 2021

My second radiotherapy treatment

This didn’t take as long a the first one because they had got a lot of information yesterday, and the actual procedure was exactly the same. This time the chief radiographer was a young man, who was very charming and friendly. They all put one at one’s ease and help one get as comfortable as possible.

 

Monday 13th September 2021

My third radiotherapy treatment

The weekend passed without incident and I did not notice any changes to my skin. I have been applying the cow cream moisturiser twice daily as instructed.

Today wasn’t such a good day for me. I woke very unrefreshed after a bad night. I always sleep badly with my ME anyway, and last night was particularly bad, and I had a headache on waking, which lasted all day, and I felt a bit spaced out and brainfogged. Also, my TMJ pain is no better, despite the exercises and ibuprofen.

When I arrived at the reception I asked whether it would be possible for me to speak to someone, perhaps one of the specialist oncology nurses, and the receptionist informed me that there was someone who would be giving me an interim check today anyway, to see how I was getting on, which was good.

Before I went in for my treatment, she came to speak to me – she didn’t introduce herself and I think she was probably Dr. Goodman’s registrar. I told her that I had developed the TMJ pain about 10 days ago and it had come on quite quickly. She said she thought it was unlikely to be an effect of the exemestane, because:

1. I hadn’t been taking it for very long – although when I told her I had started my second pack, and had therefore been taking it for about 5 weeks, she said maybe.

2. The sort of bone/joint pain is usually in the knees, and it usually develops gradually.

She said that the TMJ syndrome may have returned because of various changes going on in my body at the moment with the whole cancer scenario, and that it might just be associated with my ME.

I told her that I had first experienced this condition when I was going downhill in the months after I first developed ME in 2007, and I had not had it since, and I thought it had to be more than coincidence that it started now, just when I was starting to take a medication known to cause bone and joint pain. She said there was only one way to check, and that would be to stop taking the medication for a while (she suggested four weeks) and if it cleared up, then it would prove pretty conclusively that it was a side effect of the medication. She said she would make a note of this, and that Dr. Goodman would not mind my stopping for what would be a relatively short period of time compared with the total five years during which I am taking a hormone blocker.

I also mentioned to her that over the past week or so I had noticed some blood in the mucus coming from my rectal stump (sorry if this is TMI!!) – after an ileostomy, if you still have your anus and a small remnant of rectum left, this still produces the mucus naturally produced to lubricate everything and allow one to poo easily. Without the poo, this becomes more obvious, and even a short rectal stump will produce it. I find it builds up over a few weeks and then I can feel it, and it is not very easy to expel because there is nothing with which to “bear down” as one would when pooing normally. Sometimes rubbing the area with toilet paper makes the skin bleed a little, but this is different – there is definitely blood in the mucus itself, which I have to say does concern me quite a bit. Bleeding from the rectum can be an indication of cancer.

Mr. Pullan, my colorectal surgeon, told me that even this small remnant of my bowel was still likely to be inflamed as the rest of it had been with my ulcerative colitis, and as such, would still be at higher risk of developing cancer than a normal bowel. Having had two primary cancers, I no longer feel invulnerable and am concerned that it could be happening again in that region.

The woman who spoke to me today said she thought it was most unlikely to be a side effect of the exemestane, but again, if it cleared up while stopping the drug for a while, this would indicate a connection. She said that if I was concerned, I should approach my GP about this because it would require a separate referral.

I do hope I am not getting back on that particular merrygoround again… I shall leave it for a week or so and see how things go, and if it doesn’t clear up, I shall make an appointment to see the GP.

The woman said that she would be checking on me again on Wednesday, during my final appointment for radiotherapy, and would examine my skin to make sure that all was well. She checked that I was using the moisturiser OK, and was pleased when I told her I was using it twice daily, and confirmed that Udderly Smooth was a good one to use.

She ended by saying that after four weeks she would contact me by phone to remind me to resume the exemestane, and to see if stopping it had made any difference, and then I was free to go in for my treatment.

I think I mentioned before that the gown they issued me with at my planning meeting was kept in a bag for me, and given to me for my first treatment, after which I was told to take it home and bring it each time; it makes sense not to issue me with a clean one each time as it’s only me wearing it, and for only half an hour or so each time. Today I thought I would photograph it.

It’s a clever design, very practical, and making it possible to maintain one’s modesty as much as possible! Since you don’t have to undress your bottom half, there is no need for a full-length gown, and this jacket-style one works really well. I first had one of these when I attended the Breast Unit for the first time for my biopsy, and thought what a good idea it was. I had a look online but couldn’t find any pictures of similar ones. I think our hospital is very good with this sort of thing. Each time I’ve been in for surgery relating to my ileostomy, I have been given nightgowns which are much better than the awful regular hospital gowns with the useless ties on the back and which expose everything! I’m not sure if they are exclusive to the gut ward. These nightgowns have a nice yoke and short sleeves, and the back is open, but consists of two panels which have a large overlap sewn into the back of the yoke. This means when you stand up, your bum is well covered, and the garment looks like a regular nightgown, but it is very easy to pull the flaps forward for easy access to one’s stoma, rather than having to pull a gown up from the bottom. I’ve never heard of any other hospital providing specialist gowns like this for different conditions, and I think it’s a really good idea.

This time I felt a lot more uncomfortable on the table. It was probably because I felt so tired, but having my arms in that unnatural, extended position above my head was quite painful today, and I found it more difficult to relax down onto the table. While I was lying here and thinking how uncomforable I was, I prayed for strength, that I would be able to maintain this position for about twenty minutes without moving, and was suddenly reminded of verses from Psalm 22 – the extraordinary prophetic passage about the crucifixion of Jesus, written as from the point of view of Jesus Himself, penned by King David centuries before the time of Christ, when this form of torture had not yet even been invented:

I am poured out like water, and all My bones are out of joint; My heart is like wax; it has melted within Me. My strength is dried up like a potsherd, and My tongue clings to My jaws; You have brought Me to the dust of death. For dogs have surrounded Me; the congregation of the wicked has enclosed Me. They pierced My hands and My feet; I can count all My bones. They look and stare at Me. They divide My garments among them, and for My clothing they cast lots.

As I thought of this, and how the medical experts have described exactly what happens to a body being crucified, how the shoulders become dislocated, I thought how much the Lord Jesus suffered for each and every one of us, and I stopped my inner complaining, and my mild-by-comparison discomfort became easy to bear. I had to lie there for twenty minutes. Our Saviour hung on that cross for six hours.

When I arrived and they had asked me how I was, I told them I was feeling not so good today and that I’d had a bad night too. One of the young radiographers was so kind and said that the whole experience is very tiring anyway, and even the daily journey to the hospital can take it out of you, although I said it wan’t too much of a problem for me because my hubby always brought me and I could relax in the car. Talking about my sleeping (or lack of it) she asked if I was able to nap during the day if I needed to, and I said I could – I often had a little dip around tea time and then another one around 10 p.m., and could get an odd half hour or so then, but I was always wide awake into the small hours. She said to listen to my body and rest when I needed to.

The procedure was soon over, as before, and I was free to go. When I got home I felt utterly drained and had a rest, and after my hubby made me a nice cup of tea, I slept for half an hour before my wretched bladder woke me up and I had to get myself going! However, the rest did refresh me somewhat.

I think my fatigue today is more ME-related than radiotherapy-related as I’ve only had three treatments, but we shall see – I am sure I will feel better tomorrow.

 

Tuesday 14th September 2021

My fourth radiotherapy treatment

I was feeling tons better today, and the treatment went ahead without incident, and I felt a lot more comfortable than yesterday.

The staff allowed me to take some photos of the treatment room.

This is the table, set up specifically for me. Note the lovely wallpaper covering the cupboards on the far wall. They’ve made an effort to make the room look as nice as possible.

The gap between the small V-shaped projection and the sloping part is where I have to put my bum! It’s pretty uncomfortable until I get settled, and then it’s not too bad. They slide the large red thing up underneath my knees.

The machine itself. The cylindrical thing coming down from the ceiling has sensors on cables that can be pulled down and stuck on you – they did this on my first day but not since.

The whole thing revolves so that they can direct the circular part, which is where the radiation comes from. The flat plates are X-ray machines; they take a couple of images each time before they begin the treatment. The bursts of radiation are done first on one side of the breast, and then the machine revolves around, and they target the other side, so that the whole breast receives the irradiation.

The equipment is lined up with the aid of green lasers which come from a cross-shaped hole in the ceiling above my head – not visible in these photos, but this Internet photo gives an indication.

The radiography team on duty today.

This is one of the back-lit ceiling panels. It really did look as if you were looking through a skylight at some beautiful spring foliage. The trouble is, most of the time the view was obscured by the machine!

This treatment is far preferable to chemo which was horrendous. I am so grateful that I don’t have to endure that particular ordeal again.

 

Wednesday 15th September 2021

My fifth and final radiotherapy treatment

I had my final radiotherapy session last Wednesday after I’d published my WOYWW post last week. When I arrived, the chief radiographer asked if I’d had a good evening the day before, and I said yes, I had – I spent it making something for them! I gave the card to them before we began the treatment and they were thrilled with it. They said they would put it up in the office where everyone could see it.

Before I went in, the same lady came to speak to me, who had spoken to me on Monday. She hadn’t identified herself and I assumed she must be Dr. Goodman’s registrar. On Tuesday I asked at reception and they told me she was a radiologist. On Wednesday when I saw her, I asked her, and she told me she was the community radiographer. She used to do the treatments, but now she works as a liaisaon between the patients, the oncologists and the radiographers. She told me Dr. Goodman had given her the authority to carry out my follow-up in about 8 weeks’ time, and she gave me her contact number in case I needed to speak to her in the meantime.

I mentioned again that I was still suffering from a very painful jaw and confirmed that I had stopped the exemestane (oestrogen blocker) on her instruction. She said she would phone me in four weeks’ time to see how things were going and to remind me to start taking it again if all was well.

She came in with me to the treatment room so that she could have a look at my skin, which she agreed was a bit pink. I told her the breast felt a bit tender, and she said both these things were to be expected at this stage. She asked about moisturising and I told her I was doing this twice daily as instructed. This should help prevent the worst of any “sunburn” problems.

At the end of the treatment, the radiographers said they would take some photos of me “in situ” – apparently they do this quite often for people who want it. When they handed me my phone, I took a couple of photos of my view of things from inside. I mentioned before that there was a cross-shaped hole in the ceiling above my head, through which the green laser lights emerged. I got quite used to looking up at this!

A Shoshi’s eye view of the underside of the radiotherapy machine. The central part is quite reflective, as you can see. You can see one of the green laser lights, and the “270” is one of the 90-degree marks around the outside of the circular device.

The staff then took a couple of photos of me – but only after they had covered me up with the gown again! I got my arms back into position.

More laser lights visible, and you can also see the reflective central part of the radiotherapy machine. The flat plates are X-ray machines – they take a couple of images each time before they begin the treatment.

It is pretty uncomfortable keeping your arms in that position the entire time – they always went to sleep and at the end I was completely incapable of moving them on my own and the radiographers had to do it for me!

When I got home I was suddenly exhausted, but whether this was due to the treatment itself, or whether it was just reaction or ME payback, I couldn’t determine. Not that it matters really – I rested during the evening.

 

Thursday 16th September 2021

I woke still feeling very fatigued and it took half the morning until I could get myself together and achieve anything. I did start to feel better later in the day. Continuing to apply the moisturiser twice a day. The breast is slightly tender, and slightly more pink than the other one, but otherwise no problems. I did notice, however, that it was more tender during the night and it woke me a couple of times. Not so easy to find a comfortable position.

 

Friday 17th September 2021

Today there is a definite area of darker pink skin around the scar area where the lump was removed, and the breast is more tender than the previous day. I have been feeling a lot better again today and had quite a busy day. I ordered some gentle body wash from Amazon, made from natural products and containing tea tree oil, and used this for the first time in the shower this morning.

I am being careful with the skin and not rubbing it too hard, and drying it gently, and putting on plenty of moisturiser in the hope that it will mitigate the worst of the side effects of the radiotherapy.

My jaw continues to be painful, despite doing my exercises and dosing myself with ibuprofen. I’ve been off the exemestane for a few days now but I expect it will take a while for its absence to take effect in my system. I’ve had no more mucus discharge from my rectal stump and no blood so I’m hoping that was a one-off. I shall monitor it closely and contact the GP if there is a recurrence.

 

Monday 20th September 2021

Over the weekend my breast became more tender and is more noticeably pink. It is quite uncomfortable applying the moisturiser but I am persevering with this. Later in the week I decided to go back to wearing my bra at night again so that it doesn’t move around so much, and it’s more comfortable that way.

DEXA bone density scan

Today I went to Paignton Hospital for my DEXA (dual energy X-ray absorptiometry) scan. This low-level X-ray procedure measures bone density. In my case this is necessary because I am taking an oestrogen blocker, and reduced oestrogen levels can lead to osteoporosis. This will have to be monitored during the five years I am taking this drug.

The levels of X-ray radiation are so low that the operator can remain in the room with you while it is being done. Here is an Internet image of someone having this scan. It is a lot more comfortable than the radiotherapy – this individual looks as if she’s dropped off!

https://i0.wp.com/4.bp.blogspot.com/-lIMCEUthiDI/VyuiVbcmQVI/AAAAAAAAAZQ/_4qaDRWKOk4qinzABxwmnB1hhU_7yui5gCLcB/s1600/Bone-Density-DEXA-Scan-CPT-Codes-2015-2016.png?resize=637%2C425&ssl=1

My scan was performed by a specialist osteoporosis nurse practitioner. Before it was done, she ran through a detailed questionnaire with me about my medical history, family history, medications I was on, diet, whether I smoked or drank, and whether I had suffered any fractures – it was pretty comprehensive. She also asked if I had ever been on steroids, for instance to treat my ulcerative colitis, which I had not. These drugs can cause thinning of the bones. She asked when I had had the menopause and I told her about my hysterectomy as well. She asked about exercise and I told her that I was not able to do this with my ME. We discussed my ulcerative colitis and subsequent colon cancer and ileostomy; she said this history was important in this context because it may affect the absorption of nutrients for bone health. On the subject of diet, we discussed the predominence of osteoporosis in nations which consumed the most dairy products – see the “Nutrition” section below.

She weighed and measured me.

Once she’d gone through everything, she got me on the bed and did the scan.

I had to lie still, with a block under my knees, and the arm of the scanner passed slowly by increments over my spine and hips. She then removed the block and put another one between my feet, with my legs turned inwards slightly and my feet strapped to the block to hold my legs in place, and then the scanner was run again over my hips. It only took a few minutes.

Afterwards she went through the results with me, and showed me a small model of several vertebrae with varying degrees of osteoporosis. She said that for my age, my bones were in very good shape indeed. We discussed my diet and she was pleased, as I am eating plenty of plant-based foods rich in calcium and am also supplementing with Vitamin D.

I will need another DEXA scan in two years’ time. This base-line result shows that my bones are in good condition. She said the results would be forwarded to my oncologist Dr. Goodman, and also to my GP, and that I would receive a copy in due course. She sent me away with some literature about diet and foods rich in calcium, which of course included dairy, despite evidence that this is actually detrimental to bone health! – and a leaflet about Vitamin D supplements, which is apparently standard practice.