Gertrude’s Latest Adventures

I’ve just discovered it’s over 7 months since I updated my blog
– time flies when you go back to real life after being ill!

What better time to come back to the keyboard than when I am back in hospital with Gertrude and myself under observation!
For any new readers, Gertrude was the name chosen for my breast reconstruction from the many suggested by readers at the time of her inception.

Before I relate the very recent events which put me here – it feels very familiar – like I’ve never been away 🙂 – I just want to update you on what’s happened between Christmas and now:

The post-cancer period

It took a good few months to start feeling human again after all the cancer treatment. I was back to teaching in January, although have cut down a fair bit on the number of classes I offer. Just lately I have started to feel super-human, due to a development in my thyroid treatment, but that’s another story …

After-effects of cancer and chemo:

• Muscle and joint weakness/pain – particularly in limbs. Arms most noticeable – uncomfortable to lift a cup of tea at times – wine glass seems easier for some reason. In fairness, although these effects followed on from the chemo, and were severe at first, they are now just a part of life and no big deal. In fact they are perpetuated by the ongoing oestrogen-blocking cancer drug, Letrozole, and so I’m not expecting them to go away any time soon.

That’s not to say that I’m giving in to the above symptoms – determined to keep as fit and mobile as I can, by swimming, walking, Pilates and cycling.

• The gradual demise of Gertrude – It wasn’t long after Christmas that Gertrude started gradually morphing from a soft, supple beauty, to a hard, shrivelled shadow of her former self. She changed from feeling natural and relaxed, to being stiff, creased and tense. Photographs will follow, but as with previous posts, I have placed them right at the end of the blog to avoid offense: if you don’t want to see them, don’t scroll down past the main text – you will be warned again!

  The reason for this deterioration, I discovered, was the gradual build up of tension in the scar tissue encapsulating the silicon implant, on the inside of the breast skin. This was as a direct result of the radiation treatment, which had finished at the end of November. Apparently its effects can stay in the body for a whole year!
  Gertrude was effectively being slowly strangled!!!!
  I saw my surgeon about this a few months back. He needs to remove the current implant, radially cut the scar tissue inside the breast shell to release the tension, and then insert a new implant, possibly slightly bigger, to even things up (although there’s no way he’ll be able to emulate the droop of Gertrude’s counterpart 🙂 ). The plan was to do this just before Christmas to make sure the radiation effects don’t happen again, and to fit in with my work.
  Gertrude will have a makeover!!!

• Death of brain cells – I know it happens to everyone with age/ menopause/ whatever, but my degree of ‘dappiness’ (is that a word?) has massively increased since my cancer and chemo. I’m so bloody absent-minded, forgetful and
  the polar opposite of ‘sharp’ at times.
  A lot of times.
  It’s frustrating.

So – back to the present and why I am back in my second home.

I had a great day on Thursday. Getting lots of cooking done, a lovely walk with the grandog, and Bisley Teas on the Rec. Gertrude had felt a little uncomfortable, but I’d assumed it was just the way my bra was sitting, and hadn’t given it any further thought.

Then at about 5:30 pm I started to shiver uncontrollably and feel generally unwell. Plus Gertrude was feeling very painful to the touch. Took my temperature which gradually got higher, and by the time Greg came home at 7, I had started packing my overnight bag for a trip to A&E and beyond!
Gertrude had become extremely red in appearance, and inflamed.

Arrived at A&E by 8.30 pm, and admitted to the ward by about 11:30, complete with i/v antibiotics to treat the obvious infection.  Saw the breast team the following morning. At first they thought it was a breast abscess, but this wasn’t confirmed by ultrasound.

The eventual diagnosis was cellulitis, so I’m very pleased I caught it early.

Several days later I am pleased to report that with my temperature having stabilised, and Gertrude looking like a different girl, I should hopefully be ‘let out’ today (Monday), with oral antibiotics to take home, and an outpatient appointment to see my lovely surgeon next week.

A free upgrade

I was on the Surgical Assessment Unit from Thurs night until Saturday evening.
The staff were amazing, making me feel well cared-for and respected.

I was told I would get a free upgrade to the private Parkside wing.
“Whoopee” I thought.

As much as I’ve enjoyed the private room, soft duvet and fluffy white towels,
the initial experience wasn’t great.
When you are feeling tired and vulnerable, the last thing you need is a stony-faced healthcare assistant greeting you and later, whilst just about to stab you for blood, asking “Are you private or NHS?”
“NHS. Does it matter?”
I asked, jovially, to be told sharply that my husband had to leave because 8:50 was beyond visiting hours for NHS patients. Despite the fact that private patients on the same wing were allowed completely flexible visiting. I was incredulous!!! I queried this, explaining that Greg had been staying until 10 each evening on the NHS ward downstairs. “Well we’re strict on it up here” said Bitch-Woman.

Needless to say Greg stayed put.

After a while, BW came and shoved a document in my hand, welcoming patients to the private wing (ha ha), and listing the restricted visiting hours.

So, if I was understanding this correctly, patients who had paid were allowed completely unrestricted visiting hours, whereas the NHS plebs in the same ward had visiting rights which were less flexible even than on the NHS wards!
Really??

Don’t get me wrong, I wouldn’t expect to get all the genuine perks enjoyed by private patients – different food, free parking etc etc. I haven’t paid for them.
But different visiting??
Why?
It doesn’t cost Parkside a penny for Greg to stay here until 10,
or for me to have a friend pop in during the morning.

I HATE pointless, discriminatory rules.

I CAN’T STAND injustices.

I admit that my reaction was probably heightened because I was feeling ill and vulnerable, but this is the case for most patients. However, the whole experience made me feel disrespected: like a second class citizen. Bitch Woman certainly didn’t help, with several other unprofessional encounters over the following days. I don’t think I’ve ever previously experienced a healthcare ‘professional’ coming into the room first thing in the morning and starting to do my obs, without uttering a single word to me – not so much as a ‘good morning’, until I forced it out of her.

Phew – good to get all that off my chest!

I asked to speak to the unit manager this morning. Actually got the matron, who was absolutely lovely, when I explained how the visiting rule had made me feel, and when I made appropriate training suggestions for BW. She totally agreed that the visiting rule is unacceptable, and has said she will email round all the staff (she was under the impression that she’d already made this issue clear to staff anyway – yeah, Bitch Woman!!), and get rid of the document that I was so lovingly given.

Result!
If not for me, at least for future transferees from the dark depths of the NHS wards 🙂

So …. here come the photographs. They show:

1. Pre-mastectomy Gertrude
2. Immediately post-reconstruction Gertrude
3. One week post-op Gertrude (alongside her friend, affectionately now known as Daisy) for an overall comparison view
4. Supple, beautifully recovered Gertrude
5. Partially-strangled and greatly-shrunken Gertrude, resulting from the radiotherapy
6. Dot-to-dot infected Gertrude (The doc had to draw around the infected area when I first came in, to allow monitoring of changes. As he was on his knees, eye to eye with my breast, he muttered
   “They don’t teach you this at med school”!
   Think Art School would have been more appropriate under the circumstances 🙂 )

I’ll say goodbye for now. Thanks for reading, and for all those of you have been so supportive, in person, by ‘phone, and via Facebook over the past few days. xxx

Scroll down (or not!) for photographs:

 

 

 

 

 

 

 

1. PRE-MASTECTOMY Mar 2016

2. IMMEDIATELY POST-MASTECTOMY Apr 16

3. ONE WEEK POST-MASTECTOMY Apr 2017

4. SIX MONTHS POST-MASTECTOMY (PRE-RADIOTHERAPY) Oct 2016

5. 4 MONTHS POST-RADIOTHERAPY APR 2017

6. INFECTED GERTRUDE Aug 2017

 

For me, the difference between 4 and 5, directly resulting form the radiotherapy, is the most upsetting (although fine in a bra)

I’ll be pleased when Gertrude gets her makeover!!

 

 

 

 

 

 

 

 

A Very Merry Christmas!

It’s Christmas Eve and I’m SO excited!
Christmas always excites me – ask my family.
I just LOVE choosing and giving presents.

I’m especially happy this year.
It’s been a tough one, but all my treatment is finished.
Cancer has been banished.

I always thoroughly enjoy the run-up to Christmas, but especially so this year.It’s been so lovely to catch up with friends and acquaintances.

When you’ve had virtually a year out of action, it makes you appreciate
every single thing.
I’m so looking forward to the rest of my life 🙂

I’ve been blitzing my bedroom this week. Haven’t blitzed anything since I’ve been ill, so this has been very satisfying. Most of all because I have extracted everything to do with chemo – my wigs/ wig shampoo/ chemo headgear etc. etc. It’s all gone into a box, which I’ve completely sealed, and is now up the loft, hopefully never to be needed again.
It feels good.

Looking back, although it’s been a pretty horrible year, and I certainly wouldn’t want to go there again, there have been so many silver linings. Strangely, I don’t feel resentful or unhappy that it happened to me. (Although I definitely felt both during the chemo, which I think I may have mentioned, was pretty evil!)  Having cancer has changed my perspective on life and, for this reason,
I consider it to be a positive experience overall.

Thanks so much to all of you who have supported me by reading this blog.
It means a lot.

I want to wish you all a VERY  MERRY CHRISTMAS!

Much love

Jackiexx

Cancer – why me?

I strongly suspect that this is a question that the majority of people diagnosed with cancer will ask at some stage on their journey.

I’m at the end of my journey now, and what I want to do most is look to the future. However, for me personally, it’s important, before leaving it all behind, to analyse why it might have happened. Partly because that’s the sort of person I am – I analyse everything – must be the scientist in me! But also because I want to do as much as I can to avoid the big C visiting me again.

When I was first diagnosed I did lots of research/reading around the subject. I’m going to try to summarise all the possible documented factors which could be involved in the onset of breast cancer, and then I shall outline which factors I think were relevant to me.

Please don’t take anything I write as gospel – it will all simply be my interpretation and general impressions of what I have read, mixed with a little of my gut-feeling! Definitely not a scientific paper, so I shan’t be providing too many references 🙂

Established breast cancer risk factors

• Being a woman!
  May sound strange, but men can get breast cancer. Women’s breast cells are much more active, particularly before the woman undergoes her first full-term pregnancy. They are also responsive to hormone stimulation.
• Age
  Ageing is the biggest risk factor for breast cancer. The longer we live, the more opportunities for cell mutations to happen, and our bodies become less capable of repairing them.
• Family history/ inherited abnormal genes
  Women with close relatives who’ve been diagnosed with breast cancer have a higher risk of developing the disease. In some cases this is linked to inheriting an abnormal gene.
• Personal history of breast cancer
  If you’ve already had a breast cancer diagnosis, you’re 3 to 4 times more likely to develop a new cancer in the other breast (or a different part of the same breast)
• Being overweight
  This is particularly relevant after the menopause. This higher risk is because fat cells make oestrogen, and oestrogen can make hormone-receptor-positive breast cancers develop and grow.

 

• Menstrual history
  Early  puberty and late menopause can increase risk. The longer a woman menstruates, the higher her lifetime exposure to the hormones oestrogen and progesterone. These factors are associated with a higher risk of breast cancer later in life.

  

• Using HRT
  Combination HRT, which contains both oestrogen and progesterone, increases breast cancer risk by about 75%, even if only used for a short time. Oestrogen-only HRT does increase risk, but only when used for more than 10 years.

 

 

 

 

 

 

 

• Drinking alcohol
  Alcohol can increase levels of oestrogen and other hormones associated with hormone-receptor-positive breast cancer. Alcohol also may increase breast cancer risk by damaging DNA in cells. Compared to women who don’t drink at all, women who have three alcoholic drinks per week have a 15% higher risk of breast cancer.
• Lack of exercise
  Research shows a link between exercising regularly at a moderate or intense level for 4 to 7 hours per week and a lower risk of breast cancer.
• Smoking
  Smoking is linked to a higher risk of breast cancer in younger, premenopausal women.

  Emerging breast cancer risk factors

• Low vitamin D levels
  Research suggests that women with low levels of vitamin D have a higher risk of breast cancer. Vitamin D may play a role in controlling normal breast cell growth and may be able to stop breast cancer cells from growing.
• Eating unhealthy food
  No food or diet can prevent you from getting breast cancer. But some foods can make your body the healthiest it can be (an unwelcoming environment for cancer cell growth), as well as boosting your immune system.

• Chronic stress, arising from emotional trauma
  Numerous studies have connected stress with lower immune function and higher incidences of disease in general.

   

  Which risk factors have applied to me?

  Well obviously gender and age have not been on my side!

My lifestyle, before cancer, involved what I thought was a reasonable level of exercise: I would swim once a week, walk a couple of times a week, and occasionally cycle. I’m thinking now that this is probably not enough to lower my risk of cancer returning.

My diet has, in all honesty, been a bit iffy.
Not that I wouldn’t eat healthy stuff – more that I would consume an awful lot of crap to go with it! I have been addicted to sugar since I can remember. Yo-yo dieting has been my forte, and hence my weight has correspondingly fluctuated. Whilst I’ve never been obese, there have been times when my BMI has been on the high side of acceptable. Moreover, extra weight always seems to deposit around my middle, which is apparently the worse place in terms of health.
My intention is to write another blog post entitled ‘My Relationship with Food’, but suffice to say that my body, in the past, has certainly not provided a hostile environment to cancer cell growth.

And then there’s alcohol.
In general my alcohol intake is pretty moderate I think. Although I definitely do enjoy a drink 🙂  I mostly drink socially though, and I don’t feel my alcohol consumption would have played a part in causing my breast cancer. I am thinking now though, that I probably should be more aware of the risks. I’ve no intention of giving up alcohol, but I need to be more careful with decisions about how much to drink.
I really don’t want the cancer to come back.

On the plus side, I’ve never smoked, so lots of brownie points in that direction.

Before being diagnosed with breast cancer, I was on a combined HRT drug for 12 years. In hindsight, knowing what I now know about the breast cancer risk,  this was crazy.
Why did I stay on it for so long?
My menopausal symptoms were pretty horrendous in terms of mood swings and depression. I was, in fact, pretty evil! I wish now, that when I eventually started taking an antidepressant around 8 years ago, I had realised that it probably would have helped with the menopausal symptoms, and negated the need for the HRT.
However, it was always easy to maintain the status quo in terms of continuing to take the HRT whilst I felt OK, being terrified to risk a backward step in terms of my well-being. I had heard about HRT risks; Greg had nagged me about it: but I really didn’t think it would happen to me.
Plus I was stubborn.
And as it turns out, pretty foolish.

I discovered last year that my vitamin D level was too low. I’ve always been a sun-worshipper, so this surprised me. I do get plenty of vitamin D in my diet, but apparently this isn’t very significant in comparison with the amount of D vitamin produced by exposure to the sun. I don’t know how much influence the vitamin D deficiency had on my breast cancer diagnosis, but it probably didn’t help.

What triggered the cancer to start growing?

So it seems that my breast cancer risk factors were certainly not insignificant. Once my breast cells had started mutating, the risk factors would presumably have played a significant part in allowing the cancer to develop and grow.

But what triggered this process to start happening?

My gut feeling is that it was stress.
It is well documented that chronic stress can cause illness.
I found this link to be a good explanation of how/why this happens:
http://drbenkim.com/reduce-stress.html

This site is interesting, too:
https://thetruthaboutcancer.com/emotional-trauma-cancer/

Although mellowing hugely with age (!), I would describe myself as more of a ‘stressy’ person than a relaxed one. However, I have always been able to let my stress out, rather than internalising it. If I have an issue with someone, or something, I will talk about it until it is resolved. For this reason I had always felt I would never get cancer – simply because I never kept my feelings in.

Just over a year ago, I experienced a severe emotional trauma.
It wasn’t a bereavement, but it felt like it.
I wasn’t able to eat; I couldn’t sleep.
The shock took over my whole being.
Although it was emotional, it felt physical

The biggest problem for me was that I had to keep it all in.
I wasn’t able to discuss and potentially resolve it.
Hence rather than being a one-off event, it became chronic.

One of the basic laws of science is:
“Energy cannot be created or destroyed; rather it changes from one form to another”
It’s logical to me that stress, if kept inside the body, is an energy which can’t just dissipate, but instead could become a source of cancer cell growth.
I believe the extreme shock, and the ensuing chronic stress, that I experienced may have been a trigger for the start of my cancer.

Here is a quote from another online article I read:
“Experiencing a single, major life event was found to be potentially much more damaging than regular exposure to stress situations, particularly if the individual was unable to externalize her emotions and obtain appropriate help and counselling.”

My anti-cancer plan for the future

What am I going to do, going forwards, to minimise my risk of cancer returning? Here is my plan:-

1. Lower the oestrogen level in my body by trying to control my weight and alcohol intake. I’ve also been prescribed Letrazole, which is an oestrogen blocker.
2. Continue to gradually make positive changes to my diet, creating a more hostile environment for the growth of cancer cells.
3. Increase my level of exercise.
4. Monitor my vitamin D level, and adjust the supplement accordingly.
5. Keep my stress levels low. For me this means ‘letting things go’ when I feel upset, something which I don’t find easy.
   Any advice welcome please!
6. Aim for a better work/life balance, allowing myself more time to relax. Hopefully this will be achieved soon, once the purchase of our seaside flat is finalised!

   

    

    

    

    

    

    

    

    

    

    

    

    

    

 

The Light at the End of the Tunnel

Only ONE more radiotherapy session (out of 15) to go!!!!

I can finally see the light 🙂

Compared with chemo, radiotherapy is most definitely a walk in the park.
Yes – it makes you tired – a really intense tiredness which comes upon you all of a sudden, as if your batteries have run out. When it happens, you simply HAVE to stop. No choice.

However, I certainly haven’t experienced this tiredness every single day: I’m pleased to say that I’ve had some really good days over the past few weeks – dare I say I’ve sometimes felt almost NORMAL!!

Having to go to the hospital and get radiated every day could potentially have lead to a very shitty 3 weeks. However, I’m so pleased to report that I have thoroughly enjoyed this period – purely due to all my lovely friends and family who have driven and accompanied me each day.
It’s been so good to spend time with everyone.
A fabulous SILVER LINING!

Here is my radiotherapy rota ‘THANK YOU GALLERY’!

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Big thanks also to the other people who offered to take me – I really appreciated you, even though I didn’t need to ask you in the end.

The nitty-gritty regarding radiotherapy treatment….

The radiotherapy has to be targeted VERY precisely, so as to avoid damage of surrounding tissue and nearby organs – namely the heart (as it is my left breast), and the lung.To achieve this, the initial set-up appointment takes place in the CT scanner, where three tattoos are applied to give permanent reference points for lining up during the subsequent radiotherapy. The tattoos are just tiny black dots – shame I couldn’t have had something a little more inspiring, as they are going to be with me forever now. A couple of little butterflies would have been nice, I thought….

It’s vital to keep very still whilst having the treatment. I have to lie on my back with my arms clasped together above my head. To make sure I am in exactly the same position each time, a bean bag was moulded to the shape of my head and arms during the set-up appointment, and then made into a solid mould for me to lie back on during every treatment.

There are at least two radiographers precisely positioning you for each part of the treatment: pushing, pulling and rolling from both sides, and drawing dotted lines over you with biro! To raise the chest up and away from the heart, you have to take a very deep breath and hold it for around 30 seconds for each part of the treatment. A monitor is taped to the chest to check that the breath is adequate, and various instructions are given over the speaker, as the staff obviously need to leave the room whilst the machine is operational.

I have to be zapped from 4 angles: one into each side of the breast; one onto the chest area, up as far as the clavicle, and finally up towards the underarm area. The machine moves across and around you to achieve this. You can’t feel the treatment itself. The uncomfortable bit for me initially was having to keep my arms very still above my head for 20 to 30 mins. On the first occasion, the radiographer had to move my arms down for me at the end of the treatment – they had gone so numb that I was unable to move them myself!!

I’ve been very lucky not to have any side effects other than the tiredness.  I have religiously applied E45 cream to the whole area twice a day, as instructed, but apparently the process can cause soreness and skin infections for some people.

Will Gertrude survive??

Radiation can adversely affect the silicone implant. So … it may be that after all this, I need to have another op to replace it. Admittedly Gertrude has gone pretty ‘tense’ – in fact she currently feels a bit like a brick . It has to be said, though, that she didn’t like the chemotherapy either, but she did recover afterwards and was back to her former glory before starting the radiotherapy. I decided to take a photo of her just before the radiotherapy began, and have posted it at the end of this blog, together with the picture taken straight after my mastectomy, so you can see how much she had recovered.
(For those of you who may be new to the blog, Gertrude was the name given to my new reconstructed breast shortly after my mastectomy 🙂 )
If you don’t want to get an eyeful of Gertrude, be sure not to scroll right to the end of this post – you will be warned again!

In the meanwhile, here is Gertrude’s song:

Click here to listen to Gertrude’s Song

Rewind to previous blog….

At the end of my last post I was about to see the oncologist and beg for some blood! So … I saw him 3 days before we were due to go on our long-awaited cruise and trip to Rome. My heart was still racing, even when I was resting, and my muscles were extremely weak. I was literally exhausted just from getting dressed. Ridiculously, for example, I couldn’t lift up one leg at a time – the muscles just wouldn’t hold it. The repercussions of this were many: I couldn’t wash my own feet in the shower, and standing up to put my knickers on was a definite no-no, to name a couple!!

Sadly I wasn’t allowed any new blood, as my haemoglobin, although low, wasn’t low enough. The oncologist was concerned though, and so referred me straight round to A&E. I was given a CT scan to check for a pulmonary embolism (thankfully negative), plus blood tests and an ECG. I then needed an echocardiogram to check if my heart had been damaged by the chemo. Trouble was, there were no appointments available for this until after I was due to go away. Our day at the hospital ended up with the doctor recommending that we didn’t travel, as she couldn’t be sure that I would be ok.
Huge disappointment.

So … we decided to pay privately for an  echocardiogram and cardiologist appointment. This happened 36 hours before we were due to travel, and I’m happy to say I was given the all-clear, with a proviso that I took things easy whilst I was away. The cardiologist couldn’t see any damage to my heart, and wasn’t sure what was causing the problem, but had to assume that it was a cumulative side effect of the chemo (I hadn’t experienced it previously after any of the chemo treatments).

As you can probably imagine, it was a bit of a rollercoaster week.

After an eventful, emotional year, we were so happy to be going away to celebrate my 60th.

We had a lovely time!
True to say we didn’t do anywhere near as much as we normally would have, but it was a much-needed rest. We managed to disembark at 3 of the 4 ports – mainly exploring on open-top bus tours each time.We had great fun with the wheelchair. I discovered that Greg had completely lost his ‘buggy skills’, almost face-planting me onto a pedestrian crossing in Sardinia!

In Genoa the lady selling us the bus tickets immediately went onto ‘disabled mode’ as soon as she saw me in the wheelchair. She charged me a concession price, and then proceeded to radio the bus so it waited for us. She then directed it to reverse nearer to the kerb so that the ramp could be pulled out, and the driver had to get off to do it. This was with the whole busload of tourists watching.It had all happened too quickly for me to protest that I could actually get out of the chair and climb onto the bus unaided!!! Having been pushed up the ramp, I could hardly leap out and dash up the stairs to the top deck, so had to spend the whole tour downstairs. Gutted!
Oh what a tangled web we weave …..

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I felt really weak for most of the cruise, especially on my birthday,
which was the day after we embarked.
It was very special though.

Greg had stayed awake to decorate the cabin, which was such a lovely surprise when I woke up, as were all the presents and cards which friends had family had made a big effort to deliver before we went away, so that Greg could pack them. What a lucky girl I am to have such thoughtful people in my life.

I feel I have to explain my beached-whale impersonation in the above photos – I had gained over half a stone of fluid in the week and a half prior to going away. Apparently a result of the chemo and/or my heart issues.
I’m please to report it has now gone!!!

Had some lovely presents both before we went, and also delivered to our cabin during the cruise.
Gorgeous flowers from Greg, Uni Gill and Mark, and Greg’s brother, Leight:

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Champagne and truffles from Gem’s dad, Rowan:

Beautiful Fortnum and Mason hamper from Greg’s brother, David:

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And more champagne and yummies on board from my lovely husband:

Thoroughly spoilt 🙂

When in Rome …

At the end of the cruise, we spent 4 nights in Rome. Our lovely friends (Coffee and Cake) Sue and Steve, and Mary and Peter flying out to celebrate my birthday with us.

As with the cruise, we booked this trip ages ago, before I was even diagnosed with cancer. With everything that had happened, we really weren’t sure we would actually all end up in Rome together.
The fact that we were all there was just SO amazing, and the six of us appreciated it hugely. What a BRILLIANT time we had!

They say laughter is the best medicine, so it’s no wonder I was feeling so much better by the end of our stay. Amazingly we managed to visit both the Vatican and the Colosseum (and of course the Trevy Fountain and Spanish Steps), without a wheelchair in sight!

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So …. back almost to normal life now. Very happy to get back to work, albeit only a couple of classes at the mo. I’ve SO missed my contact with the children.

Chemo After-Effects

As my last chemo was over two months ago now, I decided that any issues I still have should be called ‘after-effects’, rather than ‘side-effects’:-

• My heart rate and general level of heavy-breathing have gradually improved over time. My resting heart rate is still in the low 90s, rather than mid 70s, as it was before the chemo, but I’m hoping I’ll gradually get back to my old self as I start doing more exercise and get fitter. The oncologist has referred me back to the cardiologist though, just to get my heart monitored again.
• I still have substantial neuropathy, resulting in numb finger tips and toes. This apparently might not recover, but it’s no big deal really in the whole scheme of things.
• Post-nasal drip. Have you ever experienced the feeling of mucus continually being produced at the back of your nose, and constantly dripping into your throat? You can feel it going into your stomach all the time – it’s pretty disgusting. I had this for a period after every round of chemo, but it always went away in between. Sod’s law that it has stayed with me now for the couple of months since the chemo ended. 😦
• My finger nails (and toe nails to some extent) are totally ruined, and will take a while to recover. I’ve lost one fingernail and one toenail so far, and the other finger nails are almost held on by a thread!! I’ve never really been a ‘nail girl’, but I have to say, thank goodness for gel polish, which has mostly strengthened the nails and allowed them to grow, as well as hiding the pretty disgusting appearance of dead nails:
  

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• Tastebuds – still not back to normal, but this is good, as I seem to have lost my ‘sweet tooth’ and hence my sugar addiction. It’s the one after-effect that I’m hoping lasts!

 

Finally, as promised, here are some images of Gertrude, showing how well she has healed since the mastectomy and reconstruction:

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nearly there….

STOP if you don’t want to see Gertrude in all her glory!!

2. IMMEDIATELY POST-MASTECTOMY Apr 16

4. SIX MONTHS POST-MASTECTOMY (PRE-RADIOTHERAPY) Oct 2016

The photo on the left was taken shortly after my mastectomy in April 2016. The right-hand photo is taken about 6 months later, post chemotherapy, but pre-radiotherapy.

Will Gertrude survive??!

Final Chemo and Five Year Plan

Final chemo moan – I promise

I was sorely mistaken when I though the Docataxel chemo drug was preferable to the ‘EC’ which I had for the first 3 rounds. It’s true to say that people react in very different ways, but for me, the Docataxel has been EVIL.

It’s been 3 weeks and 4 days since my final chemo.
Apart from being totally wiped out, these are the side effects I have experienced this time:
severe bone pains; muscle aches; nausea; diarrhoea; sleep problems; sore hand rash; bleeding sores/spots; eyes sore and watering constantly; numb finger tips; discomfort from any contact with finger nails (feel as though they might fall off); numb face, tongue and lips; taste buds completely shot to pieces

A lot of the above ‘nasties’ disappeared around the 2.5 week post-chemo mark. I still have the neuropathy in my fingers, and the very annoying watery-eye syndrome, which refuses to disappear after two types of eyedrop (Any suggestions?)

The wiped-out feeling has been getting worse, rather than better over the past week and a half: so much so that I decided a visit to my GP was in order. My legs are like jelly and my arms like lead. Feeling very weak, and my heart rate is much higher than normal, plus it shoots up with the slightest exertion – for example, getting dressed!! I was concerned that there was either a problem with my heart, or my blood chemistry. I have been anaemic through my chemo, which I don’t think is unusual. My GP was questioning whether this may have become severe
I’m fine if I stay still!
She talked about the possibility of a transfusion, but having ‘phoned for my blood test result on Friday, my haemoglobin level doesn’t automatically indicate the need for this.
So …. the next step is to contact my oncologist, and hopefully persuade him to give me some blood before I go on holiday in a week’s time.
I really don’t want to continue feeling as I do. I literally will have to stay on the ship for the whole of my 60th birthday cruise next week 😦

Chemo Silver Linings

From my friend Uni Jacq:
“Morning – thought this may bring some cheer pre your last chemo session”

Thanks Jacq!

She also sent me this lovely little bag of beautiful charms, each with a special meaning:

 

 

From Uni Gill, who amazingly hasn’t failed to remember a single round of chemo:

 

 

And from my daughter-in-law, Gemma

 

 

 

 

 

My 6’4″ baby, Morgan, has been away travelling for 10 weeks. This came through the post when he was in Vietnam, to coincide with my final chemo:

Needless to say I cried (a lot) when I read it.

It was so lovely to see him when he subsequently arrived back, albeit for just two nights before he was off to Cardiff for his final year of Maths.

 

Retirement?

In my pre-cancer life, I always refused to even think about retiring.
My logic was “I love my work – why would I want to stop?”

Cancer (or any serious medical issue I guess) has this way of completely changing your perspective on life. Things that were important BC (before cancer), no longer have the same significance.

Greg and I managed to grab a few days away in Bournemouth, in between rounds of chemo, during the summer. It was lovely. So relaxing. (Although thinking back, it does give me a comparison of how bad I feel now compared with then, when we cycled and walked miles – no way I could do either at the moment!)

There was a new block of flats being built near our guest house, and it got me thinking about how lovely it would be if we could pop down to the seaside on a regular basis, especially as Greg has alternate Fridays off, lending itself to long weekends away.

So …. never being one to let the grass grow under my feet …. we visited a few estate agents on our last day there, and started looking at a few properties.Initially the idea was that we would remortgage our house, buy a property, use it for holidays and breaks for the next 5 years, and then move, lock, stock and barrel, once we retire.
Yes – I was, for the first time ever, thinking about retirement!
Greg stops working in 4 years time, and all of a sudden it became clear that I should, too.

I did subsequently have second thoughts about leaving all my lovely friends and social activities in this area, so we decided to hedge our bets. We would buy a small flat in Dorset, use it for the next 4 or 5 years, and then make a decision as to whether to relocate, or alternatively to downsize here and keep a foot in both camps, as it were.

After a couple of flat-hunting trips, we have had an offer accepted on a flat in Southbourne, which is just along the coast from Bournemouth, and less busy. It’s pretty small, but lovely and bright and airy: we both liked it as soon as we saw it.
Just 5 minutes walk from the beach 🙂

 

Can’t wait for it all to be completed, to get in there and to invite friends to spend weekends with us 🙂

Phonics Exit Plan!

It seems weird to even see that title – Phonics has been ‘my thing’ for 23 years now. I’ve put a massive amount of energy into the business, progressively fine-tuning it over the years, and starting more than 1500 pre-school children on the road to reading.  I’m hoping to sell it as a ‘business in a box’ some time over the next four years. The ‘box’ would contain everything a suitable candidate would need to take over where I leave off. If you know anyone who may be interested, please point them in my direction!

Between now and then, certainly when I return fully to work in January, I am planning to cut down the number of classes I offer. I want to ease myself back in gradually.

So …. that’s our 5 year plan!

Wish me luck with the oncologist, when I am begging for blood!

Chemo No.5 – A little thank you ditty

So – chemo number 5 – I can’t say this without thinking of Lou Bega’s 1999 hit:
Mambo No. 5 (A little bit of …). Remember it? I LOVE it!

Listen to Mambo No. 5 here

So … I just HAD to compose my own little ditty … to be sung in the same style/tune/rhythm and American accent – important! …. mentioning as many girlfriends as I can who have supported me through my chemo. Apologies if you have supported me but haven’t got a mention – I blame chemo-brain. In fact it’s amazing I’ve remembered anyone!!

Chemo No.5: my rendition!

Click on the above link to hear me singing my version. It opens in One Drive and you have to right click on the ‘My Voice’ file at the bottom of the page and click ‘Open’. It will then play in ‘Groove Music’ .Best to read the words on here and listen to the file at the same time, as not always clear on the audio!

Here goes:

Ladies and Gentlemen, it’s Chemo number 5!

One, two, three, four, five
I’m having this chemo to stay alive

To rap (in American accent):
I’ve got my Swimming Girls, my colleagues, the Brookwood Crowd too,
The Bisley Bunch, my customers and Choir friends, who
Just keep giving me support all of the time
It’s because of this that I know I’ll be fine!

To sing:
A little bit of Mary on all our walks
A little bit of Coffee Sue for lots of talks
A little bit of Shelley to shave my head
Lynn and her girlies to keep me fed 

A little bit of Pamela on the ‘phone
I just never feel alone
A little bit of Andrea to give me lifts
So many friends who have brought me gifts

A little bit of Swimming Gill and all her care
A little bit of Margot is always there
A little bit of Jo Clarke on email
A little bit of Uni Gill without fail

A little bit of Glynis to make me laugh
And Uni Angela to send me love
A little bit of Caroline on the phone
A little bit of Gemma in my home 

A little bit of Tracey to boss me ’round 🙂
A little bit of Paula to teach my sounds
A little bit of Jacci K who’s read my blog
A little bit of Janet who’s prayed to God

Instrumental brass section here!
To rap again:
One step forward and two steps back
This whole bloody chemo is so hard to hack
Throw up to the left, throw up to the right
Don’t expect sleep – it’s a hell of a night

To sing:
A little bit of Fifi to take me out
A little bit of Fruity Jo with all her fruit
A little bit of Uni Jacq to keep in touch
Kate and Emma to text so much

A little bit of Chris B from North Wales
A little bit of Ali who never fails
A little bit of Debbie to give advice
And all my customers who’ve been so nice

A little bit of Healthy Sue to change my diet
Fran and Amy to cause a riot!
A little bit of Jacquie B to give support
So many friends and so much thought

 Spoken American accent:
Chemo number five!!!

Don’t worry – I won’t give up the day job!

Seriously though, as I’ve said before, the support has been incredible, both during my surgery and the chemo period. Just little things such as ‘likes’ and comments on Facebook posts (especially when I was in hospital), and comments on my blog mean a huge amount and really ‘lift’ me.
A MASSIVE thank you to you all – not just the people I’ve mentioned in my amazing composition above 🙂

I’ve been reading a book, called ‘It’s the Thought that Counts’ (bought for me by Swimming Gill).

I haven’t got very far yet but, among other things, it suggests that just thinking of someone can make a real emotional and even physical difference to that person. It feels like that for me. If I hadn’t had so many people telling me they were thinking about me/ praying for me, I think this ‘journey’ of mine would have been so much harder.

Fun and ditties apart, Chemo No. 5 has actually been by far the worst round for me.

My positivity has all but deserted me over the past couple of weeks. In fact I’m sorry to say I’ve been a bit of a whingeing Moaning Minnie.

As reported previously, I thought this newer Docataxel chemo drug was preferable to the original ‘EC’. I can only assume the effects are cumulative, as this latest one absolutely knocked me for six. It’s quite difficult to describe exactly how it felt. This is my best shot:

Have you ever had proper ‘flu? (man-flu doesn’t count!) I have – only twice – it was a bit like being run over by a steam-roller, metaphorically speaking.

This chemo is like ten times proper ‘flu.
Severe aches and pains all over.
Really weak.
No energy or motivation.
Difficult to relax due to a feeling of ‘agitation’.
Difficult to sleep, even though you desperately need to.
Feeling sick, but not until the second week – weird.

The worse thing is that these side effects have lasted a full two weeks+ (although were most severe in the first week) Each time I’ve thought I was through the worst, the symptoms then came back with a vengeance.
Horrible.

On top of all the above, the lack of taste buds seemed to really get me down this time. It seems like a trivial thing to complain about, but as my friend Swimming Gill pointed out, food is normally a comfort, which often helps if you’re not feeling well. This form of comfort certainly wasn’t there – my taste buds have only just about returned to normal after 2 weeks+. The only things which have tasted almost normal are:
(a) porridge
(b) Toblerone
Hence the reason I haven’t lost any weight!

To be perfectly honest,
I have really just had enough of all this chemo lark. 

However …. ONLY ONE MORE!
Yesterday was the first day that I’ve truly managed to feel positive about this. I’ve just been so completely wiped-out up until now.

I’ve felt pretty low at times during the past couple of weeks. Not least of all due to the fact that I’ve become a bit of a recluse. I’ve been so worried about ending up in hospital with another infection, which could mean cancelling our planned cruise for my 60th. Hence I haven’t got together with groups of people; been to any pubs or restaurants; I haven’t even been to any shops until yesterday, when I decided that the risk was almost at its lowest as my white blood cells have had a chance to regenerate, so managed a couple of hours in Guildford! Probably why I’m feeling better – there’s nothing like a bit of retail therapy.

For the first time in 23 years, since I started Phonics for Four Year-Olds, I haven’t met any of the new parents and children this week. Thank goodness for the brilliant Margot, who has completely taken over my role. I’ve found it very strange though. I’m the sort of person that, although happy with my own company sometimes, really thrives on interaction with people, so I guess it’s not surprising I’ve found the last few weeks extra hard. I really miss the contact, especially with the children.

The other significant event is that I’ve now started losing my eyelashes, which I was hoping wouldn’t happen. Will definitely have to practise using eyeliner now!

I also had some really strong areas of (prickly) hair, especially at my crown, which survived  the first chemo drug, but have now fallen out.

Thanks to Ali for my lovely flowers this time:

 

… and to Shelley for the bread pudding, which unfortunately disappeared too quickly for me to take a photo! In my defence, it arrived  at the point where my taste buds were just beginning to return to some normality with strong flavours.
That bread pud really hit the spot!

The beginning of the end

So …. blood test and review on Monday and, all being well, final chemo on Wednesday!

I know I should be ok this week, especially from Tuesday when I start taking the steroids. Will be making the most of my hyperactive phase until Saturday when I’m guessing it’s going to be pretty awful, particularly if the side effects are cumulative.

Whatever I have to go through this time, I know I won’t have to go through it again.
Hopefully ever.
Everything crossed
Yippeeeee!

Chemo Comparisons and Complications

I had five days away the week before last – here’s a photo of my ‘hotel room’:

 

En-suite facilities, room service and everything!!

Rewinding a bit, I had my brand new type of chemo two weeks ago last Wednesday. I’ll talk about the side effects further on, but suffice to say it caused pain throughout the body, and required me to dose up with paracetamol. One of the things that is drilled into you on the chemo ward is that you should never take paracetamol without first measuring your temperature, as it could mask an infection, which can potentially be very dangerous. By the Sunday my temperature had started to rise. It was only 37.6 degrees, but that’s particularly high for me, as my normal temperature is around the 36 mark. (rather than the ‘normal normal’ of 37 degrees). I rang the hospital, knowing they would say I had to go up there 😦

By the time I got triaged at A&E, my temp was up to 38.3, and my white blood count was particularly low: apparently I was neutropenic. I did have a bit of a sore throat and ear, but they couldn’t see anything untoward.

The white blood count is usually pretty low after chemo, as the drugs kill off all fast-growing cells (as well as the cancer cells),  but it can become dangerously low if you are trying to fight an infection, and this can result in sepsis, which is where an infection can quickly spread from its original localised area to the whole of the body, resulting in death.

Hence the reason they are pretty careful about infections during chemo!

So …. I was admitted to the Haematology isolation ward, and there I remained for 5 days whilst they attempted to increase my white blood count, and get rid of the infection by means of intravenous antibiotics. The white blood count got sorted pretty quickly with injections, but the temperature kept spiking, causing concern that the broad-spectrum antibiotic they were giving me may not have been appropriate to target my specific infection, particularly as the blood culture results were taking a while to come back.

However …. in the end I managed a whole day without a serious (over 38 degree)temperature spike, and so I was allowed to escape on the Friday.

The staff on the ward – both nursing and support – were absolutely brilliant. Had a good laugh with many of them. My visitors were similarly amazing – definite silver linings for me – thanks to Uni Gill, Coffee and Cake  Sue, Fi, Ali, Clare, Glynis, Jools, Brid, Gem, and Rhys for keeping me sane (?), and bringing me chocolate, fruit, magazines and other goodies. And of course my lovely long-suffering Greg, who spent every evening walking around the hospital with me, massaging my feet, legs and hands, and encouraging my brain to work on the Times crossword and polygon 🙂

Chemo Comparison

Having got the measure of the first type of chemo (‘EC’), and knowing what to expect as my response to it, I was rather nervous before receiving this new ‘T’ drug.
Fear of the unknown!

It wasn’t nice, but on balance I definitely prefer it to the EC.
Whilst the EC affected me CHEMICALLY, with the sickness, depression and major hot flushes, the T had much more of a PHYSICAL effect. I was ok for the first couple of days, whilst the steroids were still in my system and protecting my body from allergic reactions, and then the pain arrived.
Everything hurt!
It seemed at first like the pain was shooting through every part of my body: neck, back and shoulders, hips, legs, feet, arms, hands, back and front passages (sorry if TMI 🙂 ), even eye sockets! It gradually became more of a ‘painful ache’ throughout my body, but by that time I had the infection as well, so it’s hard to differentiate the effects of the chemo from the effects of the infection.

The whole experience felt a bit like really bad ‘flu. The pain was reasonably controlled with paracetamol, so I can’t really complain – would much prefer this to throwing up and being depressed. Yes – that was the brilliant news about this new chemo – it didn’t make me depressed!! Despite being fed up with being stuck in hospital, I definitely wasn’t depressed at all, for which I am so thankful.

The new chemo affected my taste buds in a completely different way from the previous drug. As reported before, that one gave me extreme foodie cravings, and there were other flavours I definitely couldn’t touch – just like being pregnant. With this new drug, for two weeks everything tasted as though it was coated with flour! Not at all pleasant. I would look at some food, thinking ‘Yum – that looks nice’, but tasting the same old floury taste was very disappointing. Nothing hit the spot (except perhaps mint aero, and that was almost there)

Other new side effects included ‘fat finger syndrome’, or to give it its proper name, ‘peripheral neuropathy’. The finger tips feel swollen and numb. The skin is very tight, and feels as though it’s about to split. Using these new fat fingers is very frustrating – the strength seems to go, so that simple tasks, like opening packets, become tricky. And as for texting – well, you should see some of the gobbledegook I have produced!!

My finger and toenails are starting to go black now. Really not sure if that’s a cumulative effect of the EC drug, or an instant reaction to the T. Either way, I timed it very badly when I had my gel nails removed to let some air to them. I immediately managed to break all the ones on my right hand, which was disappointing considering how long and beautiful they had become for the first time ever 😦

Silver Linings

I was lucky to receive two beautiful bunches of flowers after this round of chemo:

From Rhys:

 

 and from Coffee and Cake Sue:

 

 My ever-thoughtful friend, Uni Gill, yet again remembered my chemo date and sent me another card and some lovely lip balm to arrive just in time:

 

Written inside:

“All hail round 4 –
you’re on the home straight now…..”

And from Bestie Chris in deepest darkest Wales, I received this card and brilliant jazzy CD:

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The week before my chemo, the lovely Jo (ex customer and now friend; henceforth to be known as ‘Fruity Jo’ I think 🙂 ) turned up with this for me:

Literally all my favourite fruit! I can’t tell you how much I enjoyed this, as did Hywel and Caroline, who were staying that weekend. I don’t think I could have possibly been any healthier going into a round of chemo 🙂
Thanks so much, Jo. xx

After my infection and hospital stay, I have become a bit of a hermit. I must admit, I had become quite complacent about the risk of infection, mainly because it hadn’t happened to me. Now I’m avoiding groups of people, and busy places. Just really seeing non-germy individuals for visits and walks. This lack of sociability is hard for me, but I think it’s worth it for the sake of a couple of months. As things stand, we are still on schedule for my 60th birthday cruise in October. I can’t risk having any chemo delayed, which would happen if I picked up another infection.

So … two more rounds of chemo remaining. After the one this coming Wednesday, I shall have only one left, which is seriously exciting. At last I am beginning to see the
light at the end of the tunnel 🙂

PS. Proud Mummy moment – Gertrude can now do a trick!!! Very few people so far have had the privilege of witnessing this amazing spectacle. If you know me well, do ask next time I see you and she’ll do a demo. If the suspense is just too much for you, think 70s Tony Holland –
The Muscle Man on Opportunity Knocks. 🙂

The ‘D’ Word

So …. I’m halfway through my chemo.
Yippee!!

I’m not usually a glass-half-empty person but, unfortunately in truth, it feels like there’s still a long way to go. 😦

The other good news for me is that my Phonics term has finished. Although I love my work, it’s a relief to have the house to myself again during this chemo period. It’s been extremely tricky to keep it all going this term. Not only have we had to negotiate my absence from teaching, but during the term two of my colleagues have sadly experienced close family bereavements,
with all that that entails.
My colleagues, Margot, Janet, Paula and Emma have all been INCREDIBLE! They’ve stood in for me and for each other, sometimes at the drop of a hat, such that we have been able to keep things going, and amazingly, against all odds, have got through the term without having to cancel a single class.
I couldn’t be more grateful to them.

The most recent round of chemo went much as before: nausea lingering , and getting worse before it got better; depression was really bad for probably only 2 days (although starting to arrive before that) I tried to take my own advice from the previous blog post, and did manage to a degree – more about the big bad DEPRESSION word later, as that was really the worst bit. I read a lot this time, which helped, as I could bury myself in a story, and manage to block it out at least some of the time.

Some silver linings, before I go on to the serious bit …

Beautiful flowers from Uni Gill and Mark on the day of my chemo:

… from lovely friends/ dance teachers, Anita and Darren

 

… and from Rhys, Gem and Scruffy:

Then goodies delivered for me (and Greg! – who says a big thank you, Lynn, for thinking of him too) during my bad post-chemo week:

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I also received some more tasty fresh eggs from ‘Lynn’s girls’. So delicious, especially during my egg-craving phase again 🙂

Hospital appointments are never much fun, but the positive for me is that they provide the opportunity to spend time and catch up with friends – Ali and Andrea lately – who have been kind enough to take me – definite silver linings in my book. Later in the year (early November), when I have to go every day for 3 weeks for radiotherapy, I’m hoping to construct a rota of friends willing to give me a lift on different days. I obviously can’t sort it until nearer the time, but do let me know if you’d be willing to join in? All offers greatly appreciated!

DEPRESSION

Have you ever been depressed? I don’t mean ‘down’ or ‘fed-up’ for a while – I’m talking real chemical-imbalance depression? If the answer’s no, then you probably (understandably) won’t know what on earth I’m talking about – you may even be the sort of person who tends to think that those who say they’re depressed should just
‘pull themselves together and get on with it‘
Unless of course you have lived with/ cared for someone with depression. Like my very long-suffering husband. Although he’s never experienced depression himself, he has an excellent working knowledge 🙂

I’m going to write from my very simplistic knowledge and experience. So please don’t assume what I say is technically correct – it’s just my personal take on
‘The D Word’.

Anyone can become depressed.
This illness shows no respect for age, sex, intelligence or social circumstances.
In my mind though, there are RISK FACTORS, which can pre-dispose you to depression, and then there are TRIGGERS, which can start it off.

POSSIBLE RISK FACTORS

• There are some people, due to their chemical make-up, who are more likely to suffer. I’ll call this a ‘genetic vulnerability’.
• Then, related to the above, but also to the way someone has been parented, is ‘personality’. Some people may be more at risk of depression because of the type of character they are, particularly if they have a tendency to worry a lot, have low self-esteem, are perfectionists, are sensitive to personal criticism, or are self-critical and negative.
• Another factor/ cause of depression can be a seemingly unrelated medical issue. Such as hypothyroidism. There are strong links between this condition and depression. Probably other illnesses too, but this one is within my personal experience.
• Persistent negative experience in childhood can come back to ‘bite you on the bum’ in adult life.
• Finally depression can be a result of lifestyle and choices – past and present – external factors which have affected the chemical balance within your body: for example,  drug and alcohol use; diet

POSSIBLE TRIGGERS – ENVIRONMENTAL

Triggers for depression to start seem to be events which happen in the course of normal life, examples as follows:

• Stress – work-related; financial difficulties; family difficulties; relationship problems
• Trauma – accident/injury; grief / bereavement; being the victim of an attack/ crime
• Life events/changes – childbirth; change of role due to children growing up/leaving home, marriage, divorce

 

Some people, although they can experience any number of the triggers listed above, might never become depressed, perhaps because they don’t have any of the risk factors, which would pre-dispose them. This applies to Greg (my husband): he has experienced relationship trauma, job loss, bereavement to mention a few, but has never been depressed. In my opinion, this isn’t because he’s somehow a ‘stronger person’ (even though he is pretty strong!) – it’s because he has absolutely none of the risk factors listed above – lucky thing!

And now to my experience of depression.
I unfortunately have virtually ALL of the above risk factors (although I’ve never actually analysed/realised this until now!):

1. I was diagnosed with severe hypothyroidism 27 years ago. It’s been controlled at times, but is still an ongoing issue today. As I said above, there are strong links to depression.
2. Personality: I am a perfectionist – it used to be extreme, but have definitely mellowed as the years have gone on; my self-esteem has always been pretty low; I was always a worrier, although have gradually learned to control it.
3. Genetics are probably not on my side. My father suffered massive bouts of depression for as long as I can remember. He was never on a even keel – either very low or high. He spent a lot of time in and out of mental institutions – even having electric shock treatment and the like.
4. I was sexually abused by my dad from earliest memory (about 3 years) to when I was around 13 (I think). Sorry if this is shocking. Some of my friends know about it, but this is the first time I’ve announced it in a public way like this. Rather than just leaving you with a stark announcement, I want to talk about it further, which I’ll do later in this blog post, after I’ve completed my thoughts on depression.

 

Life events which have triggered my depression over the years:

The longest bout of depression I can remember was triggered when my youngest, Morgan, started secondary school (10 years ago) For years I had been hugely focussed on parenting. This was my most important role. And boy, when I do something, I really throw myself into it 🙂

As you’ll know if you’ve gone through this transition with your children, it’s a completely different kettle of fish from primary – and so it should be – it’s important to let them become independent. No more taking them to school; gone are the days of chatting to the other parents at the school gate;  and going into school to help; outings with other parents and kids after school. It obviously doesn’t mean you’re redundant, but teenagers need you on their terms, you can’t necessarily decide when to spend time with them – but in my opinion it’s important to be available when they do need you.
Your role has changed.

This was my depression trigger.
I’ll talk about symptoms shortly. Suffice to say that I ended up with a combination of counselling and antidepressants. Both played a huge part in getting me better, as did the support of good friends and my family. It was at this time that I told my sons about their granddad. It was a difficult thing to do, especially with the older two (my dad was dead by the time Morgan was born), as they had nice memories of him, which I was reluctant to spoil. However, I decided it was more important that they understood me, now they were grown up. It must have been so hard for them to hear,
but they were so very lovely to me.

Other depression trigger-points for me have included when each of the boys have gone off to uni – again it’s that ‘change of role’ effect, which somehow makes you re-evaluate your life.  I least expected it when Morgan went a few years ago – after all I had a life by then: a good social life; hobbies; a thriving business; a husband who I could devote some time to after all these years. Plus I’d done it twice before; I was convinced that I would be fine this time – I wanted to embrace our first child-free time in what seemed like forever!
But BOOM! – the depression still hit me.
Not so hard and not for so long, but it was there. By this time both Greg and I had learned how to manage it better.

I don’t want to dwell on other bouts of depression, in case you think that I’ve been permanently ill, which I really haven’t! The important point I’m trying to make is that although most people will have experienced the same ‘depression triggers’ as I have, the reason they may not have gone on to become depressed is that they don’t have any/many of the risk factors listed. So if you’re a ‘just get on with it’ person, and have never understood how others can be depressed by events you have sailed through in your life, you might want to think again!

Despite the threat of ‘the big D’ always being there, I love life and consider myself to be very lucky and blessed in so many ways.

Symptoms of Depression

I can only speak from personal experience, although I know from research that many of my symptoms correlate with published ones.
In general terms, I would describe being depressed, for me, is like looking out through someone else’s eyes.

This is how depression makes me feel:

• Unsociable in the extreme. This is so out of character for me. I don’t want to see or speak to anyone, even very good friends. If I do see people, I can’t communicate in my normal way – I’m blank – conversation is stilted.
• Inability to look forward to anything. In normal life I’m like a big kid – spend a lot of time looking forward to events, to seeing people – really to everything I’m planning to do. I get excited and very enthusiastic about simple pleasures! This completely vanishes when I’m depressed.
• Extreme fatigue – everything, both mentally and physically, feels like a HUGE effort.
• Difficulty remembering things, concentrating, or even having a train of thought.
• Complete resistance to going out of the house. Mentally I know it would be ‘good for me’ if I go for a walk, even to the bottom of the garden. At my lowest, I’m simply unable to pay heed to that knowledge.
• Inward-looking – it’s hard to see past my own feelings.
• Sometimes I’m paranoid, convincing myself that no-one likes or cares about me.
• I want to sleep a lot, to block out all these completely alien, negative feelings.

If you have experience of depression, it would be good if you could comment about it at the end of this post – it may be helpful to someone else who has felt the same as you.

Sexual Abuse

Everything is a bit hazy, but I don’t think I told anybody about being abused until I was in my late teenage years. When you’re little you don’t know anything different. As you get older you instinctively know it’s wrong, but you think it’s your fault.

It obviously affects your whole life. Relationships; sexuality; attitudes; self-esteem; values. When you have children yourself, the enormity dawns on you as to what a huge betrayal this was. Having said all this, I’m not looking for pity at all, so please don’t feel difficult around me. I’m very open and  matter of fact about it now. I’ve long since ceased to hold it as a secret – I came to believe in my adult life that keeping quiet was almost condoning what this vile man had done to me.

Firstly, although it took a long time, I’ve dealt with it through counselling and discussing it with close friends and family, and learned a lot about myself in the process. Secondly, the results of it weren’t all bad: it shaped my personality in positive ways, as well as negative ones: I’m a strong and determined woman; I have very strong values and opinions in terms of parenting (I think my kids have generally benefited from this, although it hasn’t always been easy for them); I’m completely open and honest – no secrets after keeping such a huge one for all those years; I speak my mind – I thrive on communication – no subject is taboo; I won’t put up with any crap in relationships!

On the negative side, I did ‘feel’ different when I was a child, which in hindsight affected my friendships at the time, and my attitude toward friendships into adulthood. I’m probably now what you might call a ‘high-maintenance friend’: I give a lot, but I expect a lot too. I easily get hurt. Reliability is mega-important to me. You could say I’m still a work-in-progress 🙂

Next round of chemo

The first three rounds have involved two particular drugs:
EPIRUBICIN and CYCLOPHOSPHAMIDE

The drug will now be changing, for the last three rounds, to DOCETAXEL. So another whole load of different side effects to negotiate – oh joy! Fingers crossed that I don’t feel as awful as I know some people have done on this particular drug. It really does seem that reactions are very personal and can differ hugely.

In my previous blog post I asked for suggestions to help me feel more positively towards chemotherapy, rather than just viewing it as a poison all the time.

First suggestion was from my primary school friend, Jacci. She said:
“It might be a poison, but it’s on your side”
I like that – thanks Jac!

And then I had a conversation with Hywel (no. 2 son), who was very concerned that I shouldn’t be so negative when referring to the chemo. He reckoned, instead of a poison, I should be calling it a Life-Saving Drug.

So, my next dose of LSD will be on August 3rd …..

Advice to Self …

Tomorrow is my third round of the dreaded chemo.

Having got through two rounds already, I feel the need to collect my thoughts, together with valuable advice received from various friends (one in particular – you know who you are), as to how best to survive this and future  doses of torture 🙂

 Here is my advice to self ….

1. Don’t try to get back to your normal busy self too soon!
   Last time I thought I was being a really good girl, staying in bed for two whole days. Then thought I could revert to normal, but it was too soon.
2. Don’t feel that you have to be continually achieving something.
   I tend to be like this in normal life – can’t accept doing nothing – always feeling the need to make progress and achieve. Accept that you need to just be treading water during this period, and put life on hold.
3. Try to balance any negatives with positives. e.g. If no energy to get up, indulge in something to lift your spirits – maybe watching a comedy series on the tele.
4. Don’t even attempt to do any jobs which involve thinking.
   Brain power is severely compromised after chemo. I found last time that I was making silly mistakes, and consequently had to keep checking things several times, with the result that ‘thinking jobs’ took disproportionately long. It isn’t straightforward to achieve this with a business to run, but with the end of term approaching, everything will be less time-sensitive and hence it should be easier.
5. It’s fine to feel negative – don’t expect yourself to be Superwoman all the time.
6. It’s ok not to feel sociable, and fine to hide yourself away.
   This is completely alien to me in normal life – I thrive on interacting with people. Hence it’s a bit of a shock when I don’t even feel up to speaking on the ‘phone, let alone seeing people in person.
   Here’s one of the messages from a lovely  friend, who has had to go through all this in the fairly recent past: “You are like a wounded animal at the moment and that’s exactly what mother nature is telling you, go hide, lick your wounds(not literally haha ) and gently recover until you are ready to face the world again.”
   Good advice.
7. Accept that the depression might happen again. Believe that it’s temporary and will lift. It lasted for 4 or 5 days last time. When you’re in the middle of it, it’s hard to see a way out, but you now know that it WON’T last.
8. Have something specific to look forward to after this (and every) chemo.
   This time Greg and I are planning a few days away during the second half of the cycle, when I’ll be feeling better. Not sure where yet, but a place where we can do lots of walking and cycling, and hopefully have a bit of sea air, too. After the August chemo, we’re planning a trip up to Droitwich Spa to stay with Hywel and Caroline in their new house.
9. Keep up fluid intake after chemo. Water tastes pretty ropey, so there’s a tendency to avoid it. I’ve previously been reluctant to drink squash or cordial, as I’m programmed to think of these as empty calories. However, more important to get the fluids into me, whatever that calorie count!
10. Greg to sleep in another bedroom! For one reason or another, post-chemo sleep is very disturbed. Greg has ended up absolutely exhausted each time, which is pointless when we have a spare room. This time will be different!
11. Buy in plenty of eggs and tuna, in readiness for the post-chemo cravings 🙂
12. Take one day, or even one hour, at a time.

 

Human again!

It’s been so lovely to feel human during the past week or so.

This was my post-chemo experience last time:
Day 1: chemo
Day 2 – 8: feeling constantly nauseous, especially after day 4
Day 5 – 9: depression
Day 10 – 11: – started to feel a bit human
Day 12 – 20 (today): – feeling pretty damn good

I’m expecting the same this time, although it should be said, from speaking to others going through the same chemo cycles, everyone’s experience in terms of side-effects seems to be completely different. Some people haven’t felt sick at all. One lady I’ve been chatting to at the hospital has been completely incapacitated during the five days of injections to stimulate white blood cell production, whereas they didn’t seem to touch me at all.

Silver linings – reasons to be thankful and positive

•  I met a lady on the make-up course with children aged 1 and 3. I can’t imagine what it’s like to go through this and still have little ones to care for. I’m truly lucky to be able to rest as much as I need to after my chemo.
• I get to choose a different look every day, depending on my mood:
  

  

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  I have several other alternative headwear options, which I haven’t yet photographed – next time.

• I’m not in the habit (yet) of exposing my bald head to the world. I don’t think it looks too bad though, and if we eventually get some summer, then it might happen, as the wigs, and even the scarves, are bloody hot!
• I have lovely smooth legs and armpits 🙂
  (Annoyingly though, the soft, downy, old-age hair round the edge of my face/chin is stubbornly staying put – sod’s law)
• There is plenty of opportunity to read, during my post-chemo resting week. This never happens during the daytime in normal life!
• I’m still often receiving lovely, caring  messages of support from friends, family  and Phonics customers. It means such a lot to have so many people sending me positive thoughts, and telling me that they are praying for me. I have seen the best possible side of people and experienced kindness and generosity that I just couldn’t have predicted. Thank you.
• More pressies, firstly from my lovely friend, Lynn, who wrote:
  “Eggs from my girls for those egg sandwich cravings”
  – her ‘girls’ being her chickens! And so yummy they were too. (The eggs, not the chickens)

And a box of surprise parcels from my bro-in-law, David in Switzerland:

• 

 

 

• Thinking of the cookbook above, which is fabulous and very informative, this whole cancer experience has resulted in me getting of top of, and controlling, my diet, rather than it controlling me, as it has so often in the past. I’m trying lots of new ideas, which I just didn’t make time to do previously – and have lost some weight – bonus!
• I now have finger nails, which I’ve never in my life previously managed to grow. The hospital advise you to get your nails done, to counteract the effects of the chemo, which can make them go black and weaken. Having never been keen on painted finger nails, I have to say I am now quite enjoying them. They make me feel like a grown-up :-)
• There are many nasty chemo side-effects that I haven’t (yet) experienced. Fingers crossed.
• During my ‘human’ periods, I’m feeling fantastic, getting a lot done, and really appreciating life like never before.
• Perspective on work-life balance is changing. As much as I love my work, once I get through all this, it will no longer be such an important priority in my life.
  

  Chemo positivity

Finally, I really would like to start thinking positively about the chemo itself.
I can’t help thinking that it will be more successful if I view it with a positive attitude.
This is easier said than done – as I said previously , it can only be described as poison, which doesn’t endear me towards it.

Any help and advice to steer my thought processes in a positive direction would be gratefully received, please.

Wish me luck for tomorrow!

Black Clouds – The Real Chemo-Me

Everyone remarks on how positive I always am.
Well – not at the moment.

My elation following the lack of post-chemo puking was short-lived.

I’ve been feeling Low with a capital ‘L’ this week.
The tendency is not to want to write when I’m down, but then if I don’t, this blog just won’t be a true reflection of the whole chemo process. So as well as everyone continuing to think I’m Superwoman, it’s simply not realistic and won’t be helpful for anyone else going through a similar ‘journey’.

There’s no doubt about it:
CHEMO IS SHIT.
It poisons the whole body.

Yes, I understand – it’s doing me good.
I just can’t actually feel that at the moment.

Physical and emotional experiences post-chemo

• Feeling sick – it feels wrong to moan about it, as the experience was so much better for the second round. However, I’m afraid I’m feeling negative, so moan I will. I started feeling seriously nauseous on Sunday, which continued until yesterday. Even in the night. I’ve never eaten so many ginger biscuits and pieces of toast in a short space of time.
• Sleep issues – it’s weird – you feel absolutely exhausted, but can’t seem to sleep for longer than a couple of hours at once. Our bedroom has been like Piccadilly Circus of late.
• Night sweats – when I’ve heard people mention these before, I’ve just assumed they are akin to ‘hot flushes’, of which I’ve had plenty in my time – the heat surging through the body, and frequently waking you up, but which are fairly fleeting.
  But no! These are not just hot flushes.
  You wake up, sometimes from a deep sleep, absolutely drenched from head to foot. Sometimes they happen when you’re already half awake, in which case the damage limitation is easier, as you can throw off the covers/ switch on the fan in time to do something about it.
• Depression – I’ve suffered with depression in the past, so I can easily recognise it. It makes you into a different person. Your whole perspective changes. I’m someone who always likes to see the positive in every situation Depression takes this ability away. I’m someone who loves company, and thrives on interaction with people. When I’m depressed I just don’t want to even see anyone, let alone interact. Today we have no dinner, as I haven’t even been able to face going to Sainsburys. (Thank goodness for no. 1 son, who will now shop and make dinner for the second day in a row xx)
• Tearfulness – I’m bursting into tears at the drop of a hat – very frustrating.
• Cognitive issues – it’s difficult to think straight, and get through a complete train of thought. Known as ‘chemo-brain’ – just a huge fog that seems to envelop you at times. In fairness, this is probably just a result of the extreme tiredness.
• Fatigue – everything just feels like too much effort

There are so many more chemo side-effects that I haven’t yet had, and I’m cross with myself for not being grateful for that. The list of effects that chemo can have on your body is endless – it’s a poison:

• mouth sores and ulcers
• vision problems
• hearing problems
• hand/foot syndrome – severe (and very painful) skin cracking/peeling
• bone and joint pain
• muscle pain
• severe constipation
• diarrhoea
• headaches
• nail changes
• neuropathy – damage to nerves which serve the hands/feet etc, causing pain, numbness, loss of sensation.
• cystitis

I’m sure there are more – not a nice prospect for the next few months.

As an aside, Gertrude doesn’t like chemo either. Both times, she has shrivelled and gone lumpy, and just generally feels irritable 😦

I HATE feeling negative, like this. Hopefully it’s just a blip.
Tomorrow is another day.
Come back, positive me 🙂