Work, Review and symposium

Returning to work has been good in many ways. I have found it more tiring than expected- getting used to early mornings again has been a challenge and I’ve been thankful for a 4 week phased return.

All our lovely students have welcomed me back and this gives me a warm sense of belonging 🙂

I don’t need to wear a scarf anymore so I’m trending a pixie look now.

On the 21 sept  and 12th October I have been reviewed by the MS team and the HSCT research team. MRI, 9 hole peg test, walking at speed, reflexes, cognitive tests and of course blood tests repeated for the research data. Hoping that the MRI results will be shared with me but uncertain if this is the case as these are to be sent to Dr Burt’s research team in Chicago.

International symposium on HSCT in MS

Attended this event at the Neuroscience institute at Sheffield on the 14th. I met with some of members from the HSCT UK forum on facebook that have supported me through my journey. Unlike me some of them have not been fortunate to have HSCT in the UK -partly because of unhelpful neurologists who have been reluctant to entertain the idea of HSCT and partly due to their diagnosis of secondary progressive MS.  Russia and Mexico have been their chosen sites abroad for their treatment. One other individual had his treatment at Kings in London.

Mindy Whatt had secondary progressive MS- she was the 5th person to go to Russia from the UK. Her condition is much improved in balance and walking. She is 18 months post treatment.

For anyone considering treatment abroad the experience has been a positive one for most -in terms of the care and expertise of the teams involved.

The frustration is that so many people are seeking HSCT abroad due to the lack of knowledge of some Gp’s and Neurologist’s across the UK – people are remortgaging their houses, taking out loans, and fund raising their way to health and to a future without MS. This does not seem fair.

The symposium was attended by Heamatologists and Neurologists across the UK- so it is with optimism that I hope the message of HSCT will be considered  more favourably in the future.

The debate on patient selection in terms of their diagnosis RR, SP or Primary progressive is still met with opposing views. Dr Burt holds the view that secondary progressive MS which maybe typical of MS ten years or more – should not be treated with HSCT although individuals having active lesions with inflammation may reap the benefits of HSCT. Dr Burt states  individuals should be reviewed based on MRI presentations. Other physicians based in Sweden- state that MRI alone should not be the only measure- lumbar puncture examination can determine levels of the harmful lymphocytes which cause the progression if the condition. Post HSCT 10 years on the T8 /CD8 levels remain low and is one biomarker indicating ongoing remission ( dare I say cure) of the condition.

Another news point is I am joining others to start a HSCT charity which will support and maybe help fund others through this wonderful journey and give people their life back – a life without MS.

 

 

 

 

 

 

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Time to go back to work

After a lovely warm summer, and time with friends and family- it’s time to return to work and catch up with all that’s been happening at SHU 🙂

I have enjoyed a week in France with Hollie, arranging her French Placement in Perpignan. I have noticed that I have more energy in general and the ability to be active all day without tiring- despite temperatures of 34 degrees! Swimming in the sea and pool with a new future ahead of me.

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Another change is I am dreaming in my sleep now- I have gone years of being completely unconscious night after night with no dreams whatsoever- – whether this is increased brain activity, or perhaps because I haven’t been at work so less cognitively challenged??? It will be interesting to find out once back to work? Perhaps the process of HSCT  interferes with sleep patterns??? One of those oddities to unravel.

I have a few joint pains and stiffness which seem to be a daily occurrence – my shoulders, hips, and knuckles- I have read that this may be due to the Aciclovir. More of an annoyance than preventing any activity – but needs to be mentioned to the medics according to the ‘side effects’ information sheet.

Had my first hair-cut today to shape my returning locks- still a bit thin on the front so still need to wear scarves for the moment.

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Next appointment with both Prof Sharrack and Snowden is on the 21st September.

Its been great having the freedom over last six weeks of no hospital appointments/blood tests!!!!!!

See you all at SHU on monday ! xxxxxxxxx

 

 

So what’s new

The days and weeks seem to be passing me by, and plans for return to work have been put in place. Met with Occupational Health last week- and a phased return is arranged for return to work in September. My sick leave will finish on the 9th August, and then I will take annual leave until the 12th September. I will just need to ask students that have been in contact with chicken pox and other childhood viruses to stay clear while my immunity stays low. Although my blood work results are now all within normal range this doesn’t mean my  immunity is all singing and dancing yet.

I have an MRI tomorrow to address the ‘pseudo relapse’ – which is going to cover the head neck and full spinal cord regions to ensure there is no new activity present. My leg does feel much stronger this week- so I tried a bit of jogging on Monday evening with fast walking in bursts- I think I managed about 3/4 mile jogging- maybe 1 mile- so not bad for a first attempt but felt the weakness creeping up and spasm in my right hip – so stopped to avoid over exerting.

Trying to do some form of exercise everyday to keep strong – Sit ups, and arm weights, walking the dog,  cutting the grass etc.

My hair is creeping back more now apart from a very obvious bald patch at the front of my scalp !!!! It feels so soft like baby hair- as far as I can tell it’s the same colour as before. No hair has returned yet to the rest of my body.

I’m not as hungry now, but my sense of taste hasn’t been effected that much as predicted.

An appointment is being made for me to see Professor Snowden in August, before I return to work, to review and give me the all clear.

An MRI appointment has been made mid October- which will be 6 months after HSCT to see if the treatment appears to have worked, this will then be repeated 6 months later. Fingers and toes crossed for this 🙂

 

 

Addressing old symptoms

Last week I experienced sensory problems in my right leg, which made me feel the leg was going to give way, tripping when I went to the supermarket.  I was worried that this was a new episode of MS and wanted reassurance from the MS team , that this was a pseudo relapse only. I contacted the MS nurse, and through their liaison with Professor Sharrack, I got to see him on Thursday. He has reassured me that it is a pseudo relapse- however to be certain he is arranging an MRI, I also had bloods taken and a urine sample taken. I was more relaxed on Friday, I think I’d been worrying, despite my  logical,  rational voice telling me it was just the stress of the HSCT making old symptoms resurface

I stopped bleeding too on Thursday too – finally after nearly four weeks!!!

Had a lovely visit from Zarah on Friday past colleague from Roherham PCT – lovely catching up- topped off by red devil cake – yummy ))))

Tired every day now, mid afternoon, mid evening.

 

Update

Today marks a month of being at home 🙂

Had a check up last week with the Dr. As I am still losing blood intermittently  during the day, she believes this to related to the linings of my womb being effected from the chemo which was made sensitive from restarting my menstrual cycle. I have been prescribed Tranexamic acid to try to let the womb settle down. This has improved, but not fully rectified the problem as yet.

Tiredness is more of a daily occurrence now- the steroids have well and truly gone out of my system and I could easily nod off mid morning and mid afternoon. Despite this I am trying to exercise, walked around rother valley country park on Monday, 15 mins on the rowing machine, lifting weights for arms, and sit ups yesterday.

My MS symptoms persist, which I now believe to be a pseudo relapse from reading others stories and experiences of HSCT- the process of chemo etc hits the body hard, and although you may not mentally feel stressed, your body is certainly stressed- therefore old symptoms from the MS can resurface. I guess I need to let my body settle and rest if I need to and fingers crossed these will subside.

I have a slight stubble on parts of my scalp so my hair is trying to come back to some degree. Finally got the hang of tying the head scarves –  a square scarf is the best! 🙂

I am enjoying my time at home, with the family, just need the rain to blow away, and sunshine to return so I can make the most of the garden this summer.

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Day Thirty- Post Transplant

Stitches removed today 🙂 that marks an end to all the invasive interventions!

I will continue on Anti-fungal meds for three months. Anti- Viral Meds and antibiotics continue for 6 months.

I have noticed that I am more sleepy without the steroids, and not as hungry as I have been over the last few weeks. My taste buds seem to prefer foods with strong flavours too.

I’m having a prolonged monthly – 12 days today which is probably adding to the tiredness. If this continues over the weekend will ring Helen the specialist nurse.

Day 24 – Post Transplant

Today I have my apheresis line taken out. I was a little apprehensive, but had been reassured on the HSCT UK awareness forum that all would be okay and that the line comes out much easier than going in. If the body has healed itself around the tube, the Dr will need to remove the cuff by digging it out- so this will involve stitches- if you haven’t healed the tube will come out easily and no stitches will be necessary.

My body had healed itself so stitches needed- local anesthetic given so you don’t feel anything, and a dressing applied. The stitches will come out after 7 days. I only started to feel a bit bruised and sore towards the end of the day with this.

Regular blood tests taken before the line came out. I went earlier this week to have the endocrine blood tests done- which Helen is going to discuss with Professor Snowden. Since I have started my monthly’s the night sweats do seem to have eased slightly.  Thyroid function has come back normal 🙂

Still feel as if I may still have a UTI- a second sample has been taken and has come back straight away as clear- and the first has been sent off for further investigation to a different laboratory in another city- so waiting to hear about this.

It’s good to be pipe-less now, and enjoying the freedom of this. All set for the summer now and building up my fitness level.

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Day 20- Post Transplant

Had a phone call from Helen Jessop today to check how I’m doing. My platelets are now at 500, White cells 10, Neutrophils 8.9. My lymphocytes are still trailing behind as expected at 4.5 so need to still be wary of infection. Generally  a good picture 🙂  Professor Snowden has said I can stop all the steroids now so another piece of good news.

I mentioned the hot sweats, and Helen is arranging additional blood tests to be done on Friday to check thyroid, and other female hormone levels. My monthly cycle has resurfaced today so maybe the menopause is not going to be an added bonus to HSCT for me- early days will wait to see what happens in the following months.

The sun is shining again today so I sit outside under the safety of a sun umbrella as chemo can make you more inclined to be sensitive to the sun.

Another good day!

Came across this article which is quite good explaining HSCT- Posted on the Multiple Sclerosis & HSCT – Moving the truth into the light site – here is the link:

http://www.medicalnewstoday.com/articles/305630.php

 

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Day 18 Post Transplant

Went for a walk around Thrybergh Country Park last night- 1 3/4  miles and felt strong- some lower back aches but definitely feel stronger than when earlier in the week. Saw a family of Swans with their cygnet’s.

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I inquired on the HSCT UK awareness site today about night sweats that I have been experiencing since the second lot of chemotherapy. I wake in the night to find I am drenched. It seems that this is common with women that have undergone HSCT, as part of the hormonal balance being in chaos from the cocktail of drugs the body has had to endure. It has been such a supportive network being in contact with others that have been or going through HSCT, through this forum- and so important to share experiences.

I wondered if this was a consequence of beginning to go into the change, as this was an expectancy that the chemotherapy can bring about early menopause. Night sweats can also indicate thyroid issues too – so I’m going to mention this next Friday when I go for my check up.

 

Day 16 Post Transplant

First check up at the Royal Hallamshire today.

Bloods taken, Urine sample given to ensure the UTI has definitely gone. Dressing changed on the Apheresis line and the little bung ends to prevent any infection.

I hear later that the bloods are all fine 🙂 Will find out next week about the UTI.

The Apheresis line is to be taken out on Friday next week. This will be good, to be free of pipes.

Generally feel well -some days more tired then others so listening to my body  and rest when I need to.

Still have fuzzy hands from the MS, and hope that the recovery over the next few months will reduce this annoying symptom. This week I have felt the burning sensation in my left big toe on a couple of days so no change as yet in MS symptoms.