Never walk, run, crawl or drive faster than your Angel can fly!

Hi, My name is Jenny and this is my "Auto-Blography " a combination of a Blog and an Autobiography.   

I have not lived a particularly exciting life (yet!!) but if one person finds a little comfort or inspiration here then it has been worth it.

Enjoy your visit, I will try to update my blog as often as possible so you can follow my journey with Multiple Sclerosis and now in 2019 Liver Cancer too and see how I deal with the trials and obstacles they place in my path.

Feel free to leave Feedback, but please keep it clean and non promotional.

Jenny xx

www.bulb.me/jenniferh3332

Blog Posts

Oh no. this does not look good.

So, yesterday I spent the whole afternoon talking to the lovely Community OT's who are setting things in motion for me to have some bath aids and leg lifters etc. I need to wait for their stores department to contact me before they come round to install them. I had to go through how my current weakn…

Read more

Scary, and all for the sake of a blood sample!

Well, I was full of good intentions to ring the Community OT but events overtook me.

Firstly, my car 'Caz', wouldn't start. I expect that as she has been sat in the front drive for almost 3 months without moving she felt a bit unloved. Actually, it was simpler than that - a flat battery. But of c…

Read more

Shielding (and Lock-down) is coming to an end...

4th June

Telephone consultation with my MS Neurologist. I explained my worsening MS symptoms and how I thought it was a progression of the disease. He agreed up to a point but was more convinced that it was due to my anaemia coming back (remember I had a transfusion last month). My GP had not dow…

Read more

What the hell just happened?

Ah, there you are, you can come out from behind the sofa now as a degree of normality is returning!

March 2020

Since my last blog the world was hit by a pandemic - CORONAVIRUS, or Covid19!

Originating in Wuhan, China this was soon killing thousands of people across the globe and there were…

Read more

Update and contact with Macmillan Nurse at last!

Have spoken to my Nurse and she has been and discussed me with my Oncologist - he is going to try and bring my scan date forward and wants me to have a blood test.

Also need to increase my omeprazole dose and get some more metoclopramide (anti sickness) pills that I was on with my Chemo. I have m…

Read more

This does not look good!

So, at least I now know I am not going mad, but the symptoms I am experiencing are not just real but are indicative of having liver cancer.

I was diagnosed with it a year ago and was at that point asymptomatic.

Now, after 16 sessions of Chemotherapy over last summer/autumn, and a scan …

Read more

The results are in...

So, it has been 8 weeks since my last Chemotherapy session and 2 weeks since my CT scan and I had my outpatients appointment to hear the results from my Oncologist.

Basically the news is good and 'Horace' (renamed as I don't want it to be confused with he who should never have been elected!), has…

Read more

What a few weeks these will be!

Well these next few weeks will be a bit of a turning point in my MS and Cancer journey.

Yesterday I had my CT Scan with contrast, scanning my chest, thorax and abdomen. This was a much much better experience than the one in August when I felt the Radiographers were newly in post and had very lit…

Read more

Wow, where has my energy gone - I thought it was all over now!

OK, only a very short blog today as I have absolutely zero energy, and I cannot keep my eyes open as well as suffering waves of nausea.

I had hoped to update this a few days ago, but for reasons best known to themselves Jigsy (my Webhost) had problems and I was unable to access my website.

I c…

Read more

Well, that's that then-Chemotherapy complete!

So there we are, I survived my sixteen sessions of GemCis Chemotherapy yesterday.

I now have to wait for a CT Scan and appointment to see my Oncologist to see if 'Boris' has shrunk, or, hopefully shrivelled away completely. I won't have this until the new year and hope to feel at least a little …

Read more

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Jenny's Blog

Oh no. this does not look good.

So, yesterday I spent the whole afternoon talking to the lovely Community OT's who are setting things in motion for me to have some bath aids and leg lifters etc. I need to wait for their stores department to contact me before they come round to install them. I had to go through how my current weakness and issues affects my day to day  living, including bathing, dressing and mobilising in and around the bungalow. They need me to take some photo's of steps and access areas which I will hopefully do when I have a modicum of energy.

We also discussed wheelchairs, and after the first suggestion about going to Island mobility to be measured up for one they decided in their second call that I should ask my GP or MS Nurse to request a mobility assessment, so it looks like I need to ring the surgery tomorrow to arrange this.

Scarily, whilst talking on the phone my voice box just seemed to seize up and I totally lost the ability to speak. For all intents and purposes it sounded like I was getting upset and it was just faltering, but no, I just could not get the words out. I had to end the call and have a drink after which it returned.

Having ended that call at 4 pm I was drained and took to my bed, only to receive another phone call, this time from my GP surgery - apparently my Hb is now down to 81mg/l lower than it was before my last blood transfusion. Also my white cell count is raised which is indicative of an infection. ?UTI, ?Chest infection. He asked me to go in at 6 pm to see his colleague who was the duty doctor. I had to request their wheelchair as knew my legs would not cope at that time of the day. She checked me over and found my chest to be clear and my blood pressure 135/65 ish. She also prescribed some antibiotics and printed off some blood forms for Grouping and Cross matching for another blood transfusion. She couldn't contact anyone at the hospital to arrange this so will get a colleague to do it in the morning.

Today, a GP rang at 8.15!! to say he was having difficulties booking the transfusion but would keep trying. He rang back later to say he had managed to book it for 9.30 am next Thursday at the Chemotherapy unit (Phew, at least they know what they are doing there!) with me having my blood test at the surgery at 8.45 am on Tuesday. 

Knowing these early starts would be impossible in my current state we decided to take the plunge to order a lightweight wheelchair online which will fold up and fit in the boot of the car, plus it should arrive on Monday so I will have it for my blood test on Tuesday morning. I know the OT dept probably won't agree, but for us it is urgent, I really can't cope if my legs are going to give way and if I am going to need transfusions every month.

The GP's and Oncologist seem to agree that this anaemia is due to chronic disease - is this going to be my life from now on? 

I will email the OT's on Monday as they are closed over the weekend.

Watch this space.

Scary, and all for the sake of a blood sample!

Well, I was full of good intentions to ring the Community OT but events overtook me.

Firstly, my car 'Caz', wouldn't start. I expect that as she has been sat in the front drive for almost 3 months without moving she felt a bit unloved. Actually, it was simpler than that - a flat battery. But of course this meant that hubby couldn't even open the door with the remote key. I knew there was a blank key which could be used but we had no time as my blood test was at 11.15.

So, Daphne to the rescue! I managed to get in after a fashion and get out using crutches to get into the surgery. Then, it went base over apex to put it politely. I had literally just sat down in the waiting room in their stupid low plastic chairs when I was called. I could not get up. Both legs buckled, as did my legs. Two Nurses couldn't lift me so I had to suggest that maybe they had a wheelchair I could transfer into by sliding across. I managed this and had my blood taken without problem. However, I knew I had a huge mountain to climb to get back into Daphne and then get out t

Shielding (and Lock-down) is coming to an end...

4th June

Telephone consultation with my MS Neurologist. I explained my worsening MS symptoms and how I thought it was a progression of the disease. He agreed up to a point but was more convinced that it was due to my anaemia coming back (remember I had a transfusion last month). My GP had not downloaded, checked or actioned the results of the blood test I had at the end of May (requested by my oncologist), and it appears my Hb is still low, this is despite my having an iron tonic in orange juice every morning. He suggested I ask my GP to repeat the blood test and in his clinic letter to him asked if he could monitor my Hb closely. I also asked if he thought I should contact the Community OT to discuss my increasing disability and he felt this was a good idea. 

Mid June

My birthday - a BIG ONE, but not a huge celebration as in lock-down, plus also alcohol and big meals are not something I can tolerate at the moment. However, my birthday present arrived on the appropriate day, a new Singer sewing machine. This meant I could be more active in my new sewing group 'FLOS' (for the love of scrubs). We make scrubs, headbands, masks, hats and ear savers for NHS staff who are not getting enough supplies and for care and nursing homes who are receiving no Government help. I am not a good enough seamstress to make sets of scrubs, but am OK with headbands and beginning to get to grips with face coverings, which even the general public are having to wear in enclosed spaces and on all public transport from 15th June.

23rd June

Well, as promised in the Corona Virus briefing earlier this week I have received a letter from Matt Hancock (Minister for Health and Social Care) informing me that my need to be Shielded is coming to an end.

On the 1st June they told me I could go out for 1 hours exercise a day with someone from my household or another household if maintaining social distancing (keeping 2 m apart).

As from 6th July I can meet up to 6 other people from other households outside whilst observing STRICT social distancing measures.

I can also form part of a bubble with another household being able to stay overnight in each others homes.

Then, from 1st August, provided I exercise caution, I can venture further out 'into the wild' to places of worship, shops or to exercise. I still need to stay home as much as possible but provided Social Distancing measures are maintained hubby and I can return to some sort of  normality. I can be instructed to re-Shield at any time should a second spike or local outbreak occur

A new kind of normal

However, the Prime Monster, Boris Johnson, also announced that for the general public many businesses can reopen on 4th July, with the safe social distance being reduced to 1.5 m in some places. Pubs and Restaurants, Cinemas, and, a huge relief for many people after 3 months of lock-down, hairdressers, can reopen. Having had my head shaved in December, my own blonde locks are at last growing and even need combing in the morning now. Hubby needs a haircut but with my MS tremor I dare not go near him with the clippers, let alone the scissors. 

It seems many places will be operating a 'new kind of normal', with staff needing to wear PPE (personal protective equipment) including visors and face coverings. Hairdressers will have to cut the chat as well as the hair and pubs and bars will need to take customers personal details in case they need to be identified as at risk of Covid19 from contact with another customer who develops symptoms. This is part of the Track and Trace system which is yet another failed Government initiative. I downloaded the App as part of the Isle of Wight trial but have now uninstalled it as it was not fit for purpose!

Back to me!

Having discussed it with hubby, I emailed the Independent Living Centre in Newport this morning, (they are currently closed but staff are working from home), in the hope I could visit and see what sort of bathing options they have available. I am thinking along the lines of a walk in bath. I mentioned in my email that I had had a couple of falls and described my MS symptoms and my recent cancer diagnosis and chemo treatment, and asked if they felt I should request a Community OT assessment first. They replied agreeing that this should be my first option, so it is on my 'to do list' for tomorrow, after my blood test tomorrow morning - I need to prepare some notes first. They said I should request an urgent home assessment which will involve their staff attending with PPE. They will see what aids I could use around the home generally, including the bathroom, and refer me for a wheelchair if necessary.

My legs are now both weak and even my right leg is giving out sometimes - I don't like it!

 

 

What the hell just happened?

Ah, there you are, you can come out from behind the sofa now as a degree of normality is returning!

March 2020

Since my last blog the world was hit by a pandemic - CORONAVIRUS, or Covid19!

Originating in Wuhan, China this was soon killing thousands of people across the globe and there were fears that healthcare systems would be unable to cope, including our NHS! 

On March 23rd I received a letter saying that as an 'extremely vulnerable person' I was to go into voluntary lock-down and be 'Shielded' for 12 weeks. I was not to leave my home for any purpose except for medical appointments, that was fortunate as the following day I was booked to have an ultrasound scan at St Mary's Hospital.

We ventured out onto very quiet roads to attend the hospital imaging department, where I was the only patient. They had already implemented social distancing measures - blocking off alternate seats and encouraged use of hand gels. I wore a face mask and we made it home safely.

At the end of March people were told to work from home where possible and avoid using public transport to help prevent the spread of the disease. Calls went out for any manufacturer that could to make ventilators, and a new 'Nightingale' hospital was built and equipped within days in London, whilst elsewhere schools were closed and many workers were put on what was called the furlough scheme to ensure they could stay at home and still receive 80% salary (up to £2000 pm).

April 2020

We were encouraged to go outside our front doors on a Thursday night to applaud 'key workers, initially just Nurses and others on the 'front line', but later to include supermarket staff, bin men, teachers and care workers. 

I remained Shielded and fortunately was able to arrange for my pharmacy both my, and my husbands medications, and book online slots for supermarket shopping (provided I was awake during the early hours of the morning). 

Health-wise

I was still experiencing abdominal pain which, as I was waking with it every morning, was very debilitating, and throughout the month I was beginning to feel very unwell and unable to breathe on even the slightest exertion - even walking a few yards in from the garden left me struggling for breathe and very weak. My left leg was giving way and I got to the point where I was unable to get out of the bath (I had a couple of falls trying), and I was seriously worried that poor hubby would injure himself helping me out or getting me up from the floor. I had to make the decision to stop having a bath until alternatives had been considered. Of course everywhere was closed so I would have to wait until lock-down had eased.

Eventually, I was feeling so unwell I rang my Surgery in tears and they arranged for me to go in and see a GP to see if they could establish the cause.

A lovely lady GP, checked me over - With a low temperature she established I didn't have Covid, and listening to my heart and lungs she could find nothing abnormal. Eventually she took a blood sample which she took to the hospital herself. Her thoughts were that it could be severe anaemia. This proved to be the case and she ordered a 2 unit blood transfusion for 4th May.

 May 2020 

4th May - Blood transfusion.

I was very reluctant to attend the hospital which by its very nature was full of sick people with Covid19 as well as other infections. I was directed to the Respiratory Gym where the staff connected me up to the infusion pump and started the blood. The floor was marked out to establish social distancing (2m rule) and I was wearing a face mask, using hand gel regularly and washing my hands whenever necessary. I was still feeling weak and unwell and very glad to get home again.

5th May - 999 call

After a horrendous night of virtually no sleep, uncontrollable diarrhoea and  weakness (embarrassingly needing hubby to give me a blanket bath and change the bedding), the abdominal pain and tiredness was so bad that I had to put in a 999 call, despite being terrified they would want to admit me. 

The crew - Stewart and Roger, were wonderful, and having liaising with my GP suggested a couple of anti diarrhoea tablets (with more if necessary) and a sleep aid tablet should be enough to help and they signed me over to the care of my Mr Wonderful with no need to admit, but to ring again if I got worse. They believed that despite all my hand hygiene measures I picked up a Gastroenteritis type bug in the unit the day before. I worried it might have been Norovirus but they dispelled that myth fortunately. I joked that I must have had a dodgy pint!

29th May - Nasty Fall

I had a nasty fall today, just stood up from my armchair and my legs seemed to give way and I went sprawling across, and demolishing the coffee table. Of course hubby was out doing a bit of top up shopping so couldn't help. I managed to get up and take myself off to bed. He came home to a scene of devastation and a very shaken up wife. Fortunately, he managed to repair the coffee table lol, although my bruises have taken longer to heal.

June 2020

Since that fall my confidence has really taken a knock and I have to hold onto furniture and walls when moving about indoors as fear my balance and weak left leg could give way at any time. I purchased a pair of crutches to use outside in the hope I could increase my exercise tolerance, but sadly this did not prove to be the case, and fatigue means I am having to lie on the bed from 4.30, often falling asleep before my meagre supper is ready (my choice, although I am trying to eat a little more now).

Update and contact with Macmillan Nurse at last!

Have spoken to my Nurse and she has been and discussed me with my Oncologist - he is going to try and bring my scan date forward and wants me to have a blood test.

Also need to increase my omeprazole dose and get some more metoclopramide (anti sickness) pills that I was on with my Chemo. I have managed to get through to the surgery and a GP will ring me back tomorrow morning ) no calls left for today apparently - not even for a cancer patient!

She feels there is a chance that it may be regrowing but obviously can't tell without a scan etc.

So, blood test tomorrow and await new scan date then.

 

This does not look good!

So, at least I now know I am not going mad, but the symptoms I am experiencing are not just real but are indicative of having liver cancer.

I was diagnosed with it a year ago and was at that point asymptomatic.

Now, after 16 sessions of Chemotherapy over last summer/autumn, and a scan indicating Horace has shrunk - so I apparently have had a 'partial response' I am now unable to eat more than a few mouthfuls of food (accompanied by liquid) before feeling full, and have almost constant nausea and bloating/abdominal pain.

According to the NHS Website:

Symptoms of liver cancer

Symptoms of liver cancer are often vague and do not appear until the cancer is at an advanced stage. They can include:

  • unintentional weight loss

  • loss of appetite

  • feeling very full after eating, even if the meal was small

  • feeling and being sick

  • pain or swelling in your abdomen (tummy)

  • jaundice (yellowing of your skin and the whites of your eyes)

  • itchy skin

  • feeling very tired and weak

Fortunately, I haven't as yet shown any signs of jaundice, and my bowels and bladder are functioning normally but Ron and I are obviously both concerned. I haven't had any unintentional weight loss, indeed, despite eating very little I am struggling to lose any weight at all!

I sent an email to my so called Macmillan Nurse last week (using the email address on her card) but have heard nothing back. My GP surgery website has absolutely no appointments available at all, and my experience with the 111 phone service was not particularly inspiring when I contacted them recently. I have a scan and blood test due on 15th April and see the Oncologist in the first week of May.

I will contact Macmillan online today for advice to see what course of action they recommend. We have our trip to the mainland booked and paid for, for next month, which may as yet need to be cancelled due to the Coronavirus (Covid 19) outbreak - I am obviously at increased risk of complications should I become infected. Whether the Ferry companies will be allowing those at risk to travel in their cars by then remains to be seen - otherwise touching hand rails, seats, tables and counters will be potentially risky. I do carry hand gel obviously and will wash my hands regularly whilst onboard, but ...

It never rains, but it pours as they say. I am hoping the symptoms are in part a response to Horace shrinking but the fact that until recently I wasn't really experiencing any at all means I am, for the first time, concerned.

Hopes, and prayers guys please xx

 

i

 

 

The results are in...

So, it has been 8 weeks since my last Chemotherapy session and 2 weeks since my CT scan and I had my outpatients appointment to hear the results from my Oncologist.

Basically the news is good and 'Horace' (renamed as I don't want it to be confused with he who should never have been elected!), has continued to shrink due to the Chemotherapy. 

The concern I had that there was some spread to the base of my left lung was unfounded as there is no evidence of any lesions or fluid around my lungs or heart. 

Phew, now that was a relief, especially after my experiences of trying to get hold of a GP using the 111 System on Sunday, them promising me a call back within 2 hours of my original call at 3 pm, then them calling me at about 4.30 to say they were very busy and I would be called back ASAP. At 8.30 I was exhausted and went to bed, taking the landline with me so I could answer it when they did eventually ring. However, by 10 pm I was struggling to keep my eyes open so I rang 111 again and arranged to cancel the ring back which they said they had done - I put the phone back in the charger in the living room. I anticipated contacting my GP on Monday morning knowing that they would have had a notification that I had contacted the system. But in the morning there was a message on my ansaphone from the 111 GP who called at 11.30 pm (by then I was asleep!).

I think next time I will go to 111 Online instead!

I had obviously underestimated the possibility of getting a GP appointment either online (their DIY online consultation system which I hoped to use was not active), or by phone. I rang and got through to the waiting list but then got cut off again. After 45 minutes I admitted defeat and decided to go down there in person. I asked for a GP to call me back rather than trying to get in to see one and the receptionist said Yes, my own GP would ring me sometime that (Mon) afternoon.

Later, I had a call from the surgery to say my GP didn't actually work on Mondays but he would ring me on Tuesday Morning! Argh, so there I was with what felt like the beginnings of a chest infection and a wheeze from the base of my left lung. I took a dose of Benelyn, and eventually managed to clear my chest through coughing and heavy throat clearing, but it did leave me exhausted.

So, Tuesday morning, predictably my chest didn't feel too bad but I still had a slight wheeze (it gets worse as the day goes on), I dragged my carcass out of bed earlier than normal and was up and about when the GP called at 11.30 HOORAY! Anyway, after a discussion a joint decision was made, that rather than antibiotics which I am always loathe to take, an inhaler may be better. True to his word he prescribed a Salmol inhaler to use when I am wheezy. Fingers crossed that this will help.

Today (Wednesday)

Today, outpatients. Another saga. For reasons best known to themselves, the management of St Mary's have decided to shift everything around, making all services at the front (South) of the hospital to be for urgent care and diagnostic scans, and outpatients to be moved to the rear North Hospital. Unfortunately, this proved to be disasterous when it came to finding somewhere to park today. Every space in every car park (and the hidden disabled ones) was taken except for one disabled space in the main front entrance car park which we had to take. Unfortunately this meant we had to walk right through the hospital to get to the new Outpatients department. The walk itself with MS was bad enough, but with an excrutiating corn on my right little toe crippling me with every step I was in agony. Unfortunately, with it being January, Sandals are not the ideal footwear so I had to wear boots - and every single pair causes pressure on my toe. I do see the podiatrist regularly as part of my diabetes care, but within a few days of them removing it, the damned corn keeps coming back (even though most of the time I am barefoot). I suppose I will have to ring them again tomorrow.

Scan result (Conclusion)

Compared to the scan I had in August...

"Overall decrease in size and density of previously demonstrated necrotic liver lesion.

Appearances are suggestive of a partial response." 

(When first diagnosed it measured approx' 10cm x 9.5cm x 9.5cm now Horace is 9cm x 7cm x 6.5cm)

The Oncologist has requested another scan and outpatients appointment for 3 months time. He has instructed us that he wants me to be in the best physical and mental state I can be, whether this means he intends to subject me to another course of Chemo or not I don't know but I will do my best. 

He believes the fact I feel worse now than I did during the Chemo is due to the MS rather than a delayed reaction to the treatments. 

So, back to the swimming, when I can squeeze myself into a costume again - I just hope my Mr Potato Head look doesn't scare other swimmers too much!

 

 

What a few weeks these will be!

Well these next few weeks will be a bit of a turning point in my MS and Cancer journey.

Yesterday I had my CT Scan with contrast, scanning my chest, thorax and abdomen. This was a much much better experience than the one in August when I felt the Radiographers were newly in post and had very little idea of what they were doing. Since then I have been troubled by a rattle and recurrent wheeze in my left lung which they omitted to scan - I really hope it does not turn out o be a metastatic infiltration, or I might have to endure surgery, radiotherapy or yet more chemotherapy.

These CT scans are not performed lightly though as they are the equivalent to being subjected to 8 years of background radiation with a Medium risk of complications arising from it. I have had 3 of these in the past year!!

According to the Radiographer who did the scan (and who looked about twelve but was actually 23!), they managed to get some very clear images this time but he was not allowed to give me more information than that. Scans are being reported on in about a week at the moment and I see my Radiographer on Wednesday 29th January for the results - fingers crossed and prayers all round please, remember this tumour is 'INOPERABLE' so shrinkage is vital if I am to have a few more years n this planet.

 

Specialist Dental Surgery

On Tuesday I have got a dental appointment with the Special Dental Service Dentist as I have special needs. Recovering from Chemo, already having MS and a HUGE phobia of dentists mean that my GP kindly referred me to this specialist service. Ron is coming with me to hold my hand if necessary although I think she will only be doing a basic check to see if anything needs doing. I just hope she doesn't probe with a metal tool as that sends electric shocks though my system and causes palpitations. I know there is one tooth that needs to come out as it is at the bottom front of my mouth and the gums are eroding at a great rate and one is overlapping the others and is hanging on by a thread. The oncologist was concerned that I would get an abscess and with the low white cell count due to the Chemo, a nasty infection requiring me to go into hospital for antibiotics. Despite this it has wobbled but remained in place, over Christmas and the New Year even with all the unhealthy foods and confectionery that I consumed! 

I shouldn't really be scared as I have NEVER had a tooth extracted or filled despite some previous regular appointments when Hygienists pushed my gum line back so far as to cause these problems. My high Dairy intake means my teeth are probably in perfect condition, but my gums are wrecked!

 

February

Then we get into February and my diabetic foot screening, and MS Nurse appointment. I already had my Diabetic Retinal screening in early January, and the result of that came just a few days later! Yes, a few days. Sadly it shows background retinopathy as a result of my diabetes, and what I suspect is the steroid affect. Anyway, the changes are not severe enough to need treatment or affect my vision for driving. Hopefully if I manage my condition well it will not get worse, even if it doesn't get better.

Better news

Right, enough waffle for now, or do you want some good news??

OK then, my ticket for Lionel Richie has been confirmed and my friend (who will be my carer for the day) will get her ticket for free. I also have a space in the nearest car park for Blue Badge holders, and wristbands to access the viewing platform. Yeah, it all turned out OK in the end.

Other news, I have booked our springtime trip up to the mainland to see the families, this is in April but I do not put dates and venues for security reasons.

Once I get these 2 months out of the way, hopefully the rest of the year will be less traumatic than 2019!

   

Wow, where has my energy gone - I thought it was all over now!

OK, only a very short blog today as I have absolutely zero energy, and I cannot keep my eyes open as well as suffering waves of nausea.

I had hoped to update this a few days ago, but for reasons best known to themselves Jigsy (my Webhost) had problems and I was unable to access my website.

I cannot believe I haven't been on here since before my Charity Headshave on 14th December. 

That actually went very well and I managed to raise £128 at the MS Shop on the day for MSS IoW. The Give as You Live webpage has done even better and currently stands at over £300 to be split between MSS IoW, Macmillan Cancer Care, and Friends of St Mary's Hospital Newport.

The symptoms I am currently experiencing, are what I was expecting whilst I was actually undergoing the Chemotherapy - although this actually finished on 5th December 2019 so I was hoping to be getting back to normal strength and energy levels now. Friends on Facebook are telling me it will take time but I am finding it so frustrating that I can't even get to meet my friends at the swimming pool, let alone swim a length.

Anyway, the Give As you Live webpage is still active and you can still donate a few quid if you have some to spare. To those who have already donated THANK YOU, you will have helped make a big difference to people with MS on the Isle of Wight, People affected by Cancer and the Friends of St Mary's Hospital who buy essential items of equipment and items to make life more comfortable for people at the Hospital in Newport, here on the island.

Here I am post head shave to prove I had it done. Thanks to Trish Gunningham for performing the honours at the shop.

Hopefully next time I will be stronger, both physically and emotionally, and will have the beginnings of a full head of hair xx

   

 

 

Well, that's that then-Chemotherapy complete!

So there we are, I survived my sixteen sessions of GemCis Chemotherapy yesterday.

I now have to wait for a CT Scan and appointment to see my Oncologist to see if 'Boris' has shrunk, or, hopefully shrivelled away completely. I won't have this until the new year and hope to feel at least a little stronger for Christmas, after which the weight loss efforts will resume again. I am horrified how much weight I have gained due to the effects of the steroids, although my skin and nails are wonderful.

I will miss the Chemo Unit, I have made some friends amongst the regular patients and staff, learned some stuff, and realised that I am stronger than I thought possible. Both the Nurses in the Unit and the Oncologist have said they were amazed I completed the whole course of 8 cycles of two sessions but I did. Despite MS and some horrid issues with my mobility, starting and titrating insulin to try to counteract the Steroid effects on my Diabetes ( I still have to do that for this one last week). I needed one blood transfusion when my Haemoglobin levels dipped but had no adverse effects during or after that.

So this is me today, thinning hair, droopy watering eye, eye-bags the size of suitcases, water retention, tiredness, waves of nausea, tremor and unsteadiness on my feet - I try to do everything possible not to fall over as being six foot it is a damn long way to go down, and an immense struggle to get up again. I look pale, although it actually feels like my cheeks are burning - I call it my radiation Glow!

Hopefully this is the worst I will look now for a few years but i will be nice to look back and see where I have come from in the future.

          

As I said, my skin and nails look wonderful (after the Radiation Glow subsides), but as you can see the hairline is going further and further back. So of course I now have the impending delight, or doom that is the Charity Head-Shave on the 14th December at the MS shop in Shanklin. This has now been moved to the office, as due to the Café there are of course Health and Safety and Food Hygiene standards that need to be complied with. However, it will be photographed and videoed for evidence and I will put it up on my You Tube Channel, and of course, on here.

I am up to £140 already but there is still time if you want to donate to my charities:

  • MSS IoW
  • Macmillan Cancer Care
  • Friends of St Mary's Hospital, Newport.    

https://donate.giveasyoulive.com/fundraising/jennies-post-chemo-head-shave

Now I can start to think about putting up our tree and some Christmas decorations up and getting back to some sort of normality.

Some exciting News

My pop hero must have heard about my trials and treatments and is, for the first time, actually coming as a headline act to the Isle of Wight Festival! 'Hello' its ONLY bloomin' LIONEL RICHIE! He was a huge part of my life in the 1980's (especially 1984!) with my Nursing partner in crime, Julie Marshall and I rarely without his music blasting out from somewhere - jukebox, CD player, Car, On the Ceiling and ALL NIGHT LONG!

Obviously with him coming all this way to see me it would be rude not to go along and see him perform, and with him appearing around the time of my birthday it will be a real treat - by June I should feel as good as I am going to get (although certainly no Ballerina Girl!), and although I have never been to the Isle of Wight Festival before, I can get tickets at Islander rate. Julie is coming over and we have a huge amount of catching up to do - she and Mike haven't even met my husband yet and we have been married 27 years next year! Hopefully they will both stay on the island over the weekend and we can take them out in our vintage care 'Daphne' for a pub lunch, we only want to see Lionel on the Friday so here should be time enough. I would find other days too long and there are no other acts that appeal to us really. Hopefully I will be able to book disabled parking and a spot on the disabled viewing platform.

Do I sound excited? WELL I AM! Roll on June!

 

 

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©Jenny Harrod 2019