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

A busy but productive week and maybe too much information ...?

Well, I am getting better at writing this blog aren’t I even if it is 4 30 in the morning!
 

Admittedly my life seems to be based on musings from the early hours when my mind is at its most active, aside from my bladder of course.

Poor Ron is still waiting for the accident and insurance c…

Read more

Possibly the worst week of our lives!

Disaster both human and vehicular

So, I cannot go into too much detail here as there is a disputed claim by the other party involved but Daphne might well have been written off. Poor Ron was involved in a RTA at Smallbrook Junction Roundabout (people on the island will know where that is.

He h…

Read more

2 days post another transfusion (still shaky though)

Thursday 2nd July

So, I had to have another 2 units of blood on Thursday, fortunately this was in the Chemo Department amongst the staff that I see as my second family and I know are experts in their field.

This was not without issues though, firstly I was so weak it took several attempts to …

Read more

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

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Jenny's Blog

A busy but productive week and maybe too much information ...?

Well, I am getting better at writing this blog aren’t I even if it is 4 30 in the morning!
 

Admittedly my life seems to be based on musings from the early hours when my mind is at its most active, aside from my bladder of course.

Poor Ron is still waiting for the accident and insurance companies to get their acts into gear so I cannot comment on that of course so I will park that there for now if you pardon the pun.
 

My MS however is another matter altogether. During the night my bladder now has a mind of its own - I only have to sit up and it’s like Niagra falls down there. I am currently using Tena Lady (well, a cheaper alternative) to soak up the contents of my bladder which I know is there but cannot control. A full bladder equals one pair of pants, although there are some mishaps which means I have had to also sit on a towel. I could of course sit on the commode, however I can then not get back on the bed without a block and tackle and a lot of huffing and puffing - my legs can only take my weight one way and then I get so shaky and wobbly they give way altogether - it is much better to sit on the edge of the bed and ‘let it go ...’ as the song goes, lol! My solution will be some Kylie incontinance pads which are arriving today - an alternative to soggy towels at least. I am getting through about 4 - 5 pairs of expensive pants a night.

I had a Eureka moment last night. I think maybe self catheterisation could be the way forwards and much cheaper, I have sent an email to the MS Nurses to that effect, obviously having been a District Nurse I know all I need to about the female anatomy ‘down there’ and have inserted many a catheter before. I hope they agree as I might get more sleep.

Talking of sleep, I have just ordered a very expensive new bed (plus an additional £300 for delivery to the island, grr). Anyway it is a high/low wooden profile bed with a coil and memory foam mattress. This will make it easier for me to get in and out and position myself during the night.  https://www.laybrook.com/adjustable-beds-wood/barden-adjustable-wooden-bed It is the added extras that makes it so expensive but I am hoping it will give us more room in the bedroom and me a more comfortable nights sleep.

Oh, and by the way I also won a hydraulic air cushion system called an ELK which if I manage to shuffle on to will raise me to a standing position. Perfect if I fall in another room. I really worry that Ron will hurt himself trying to move me - despite not eating much I am a 17 stone dead weight.

 


 

 

Possibly the worst week of our lives!

Disaster both human and vehicular

So, I cannot go into too much detail here as there is a disputed claim by the other party involved but Daphne might well have been written off. Poor Ron was involved in a RTA at Smallbrook Junction Roundabout (people on the island will know where that is.

He had right of way and had literally just pulled out to go straight over the roundabout when he was hit by a group of young women/teenagers who came tearing down the hill to his left and hit the left hand side of the car (I wasn't with him but more of that later). At the time they said that none of the four of them were hurt and they told the Police that twice immediately after the accident. Apparently the Police do not attend if they are called and no-one is hurt, and despite a Police vehicle driving past the scene they didn't stop. It was the girls who wanted the Police called and they did so twice, both times saying no-one was hurt.

Anyway, Ron wasn't hurt but he was obviously concerned about "Daphne". Upshot was that he called the RAC who said they would handle everything including moving her to the Garage for inspection by his/their insurance companies. Ron spent most of Saturday evening trying to contact the driver of the other car to pass on his insurance details and confirm hers. She didn't respond. However, last night the drivers mother called to say that she had indeed suffered an injury (whiplash) and one of her passengers were also injured - despite twice telling the Police this wasn't the case. As the fault was (seemingly) obviously theirs, as can be seen by the damage to Daphne, we believe this to be a fraudulent claim, although as there being being no other witnesses it is a four against one situation, so I will leave that there for now but I have put a picture of the damage to Daphne's axle which can hopefully show he was hit from the left on a roundabout.

They are accusing him of speeding (in a 1930's Austin 12/4 Clifton Tourer which barely reaches the speed limit!), yet they didn't even brake.The distressing part is that Daphne may well be irrepairable with only the scrap value payable. Poor Ron has spent so much getting her road worthy and show ready that he is understandably heart broken.

We have had to leave it in the hands of his insurers and the RAC but it is something we could definitely do without.

Health, Home and possible changes

So, about me then. I have been suffering stomach pains, diarrhoea, Uncontrollable urinary incontinence (who knew how much urine Tena underwear can hold), no appetite and unsteadiness on my feet.

I am so scared of falling on the floor that Ron had a hope we might be able to fit a gantry hoist to get me up if I did. There is no way he can lift me. 

So, because of the weakness, incontinence and anorexia:

  • Purchased a wheelchair to get me from car to my appointments and back (with Ron's help), although getting in and out of the car is problematic when I am at my weakest.
  • I have been referred to the hospital Dietician and await some samples of fortified foods and drinks.
  • Have taken a delivery of a commode and bulk bought some Tena Lady (well, the cheaper alternatives) which hold as much.
  • Am ordering a single bed to free up some space in the bedroom. It seems we can't have a gantry hoist so need room to manoevre a wheeled one.
  • Am going to order an Eve hybrid mattress (a Which best buy), if I pay a bit more they will take away the old double memory foam mattress.

My Oncologist is away for the first 2 weeks of August and in view of my gastro-enterological symptoms requested my scan t be brought forwards and so I had that done yesterday. Of course we now all have to wear face coverings in hospital I wore one of my home made ones. However, I had to drink so much water that I felt physically sick before, during and after the procedure - however, at least with so much fluid on board they managed to find a vein to insert the cannula and the dye so got good images, although they didn't tell me what they saw. At least my Oncologist will have time to review it and devise a further plan if necessary

 

 

2 days post another transfusion (still shaky though)

Thursday 2nd July

So, I had to have another 2 units of blood on Thursday, fortunately this was in the Chemo Department amongst the staff that I see as my second family and I know are experts in their field.

This was not without issues though, firstly I was so weak it took several attempts to get me from my wheelchair to the chair/bed. I just didn't have the strength in my arms to stand up again. Eventually with the help of 3 Nurses and a Rotastand patient turner we manged to install me in the chair. However, I was so worried I might need a wee that I didn't have a drink all afternoon.

The second and more concerning issue was that they just could not find a vein to cannulate me.

With an Hb of just 72g/l meant my circulatory system was so shut down only the large vein on the inside of my right arm was suitable. It took 4 Nurses of different ranks and about 7 attempts but Senior staff nurse Jo was eventually triumphant, although I am now left with a huge blackcurrant coloured bruise on my arm.   

Normal results for adults vary, but in general are:

  • Male: 13.8 to 17.2 grams per deciliter (g/dL) or 138 to 172 grams per litre (g/L)
  • Female: 12.1 to 15.1 g/dL or 121 to 151 g/L

Fortunately the 2 units gave me the energy to transfer myself from the bed/chair to the wheelchair and then to the car and loo (somewhat urgently) when I got home. Thank goodness for Tena Lady.

Friday 3rd July

Today I decided to have a rest day to recover from the previous day. I did have a short bout of diarrhoea but after an Immodium tablet I managed to sleep for much of the day. Mentally I felt really well but exhausted. At least I managed the short walk to and from the loo a few times without any mishaps.

Saturday 4th July

Today has been dubbed as Independence Day or Super Saturday. The Government have lifted some travel restrictions to allow foreign travel,allowed the opening of pubs, restaurants, tourist attractions and hairdressers. It is feared by the scientific experts that people will see it as a complete relaxation of lock down and see social distancing as a thing of the past. Our MS Charity shop was allowed to open today on a 4 in 4 out policy but photo's of the pub across the road at just 11.15 (opened at 12 noon) showed customers queuing shoulder to shoulder waiting to get in.

As for me I feel more unsteady than yesterday, but I made the effort to get dressed and have a poached egg on toast and some fruit (strawberries and blackberries from Ron's allotment) so he will be happy.

I also thought updating my blog whilst I have a little bit of strength (but a lot of tremor in my hands) would be a good idea. I may not feel like it for a few days now.

I also intend to pack an overnight bag in case I need to be admitted for more blood transfusions, at least the risk of Covid19 has reduced in the hospital - although with the idiots out today may well undo all the hard work lock down has done.

Thank you for being there and reading this, I will update again when I feel stronger.

Toodle pip for now,

Jennie xx

 

 

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!

 

 

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©Jenny Harrod 2019